Making death easier makes life harder
What an absolute waste of the grandchildren’s college money!'
Easing access to suicide continues to be debated, usually in discussions of the legalization of assisted suicide (now often called euphemistically “aid in dying”). But there is an argument that may not be heard in such debates: by making death easier, we make life harder.
Once suicide becomes readily available and accepted, dependent persons who refuse to choose death will be blamed for voluntarily burdening their caregivers, and for burdening society as well, thus filling the end of their lives with new sorts of suffering.
Yet this is not the harm ordinarily articulated by opponents of assisted suicide. They most commonly argue, rightly, that making a deadly drug available to dependent persons risks life itself by exposing vulnerable persons to pressure or coercion aiming at death.
But they often fail to mention the other great harm that results from any “right to die”: facilitating suicide endangers not just ailing or moribund bodies but the quality of ongoing human relationships.
Should some lives be deemed expendable?
When choosing to die is not seen as an option, we are able to imagine those who battle against serious illness or disabling conditions to be heroes struggling against an implacable fate. Their lives and their deaths are full of a meaning ready to be discovered by them and those around them.
If an ailing grandmother fights to live on, despite her pain and her disabilities, she can be the object of sympathy in her misfortunes. Insurance or governmental aid can seem to be well-deserved. Indeed, she may so inspire her family, friends, and neighbors that they feel privileged to share in some of her frustrations as they care for her. They can feel solidarity with her, and with each other, as they fight back at her side.
When death finally comes, the grandmother’s last experiences and the lasting memories of her caregivers can be of a network of persons bound together in her honor.
By contrast, the right of a severely infirm person to assisted suicide (or to voluntary euthanasia) means that the person’s life has been deemed especially expendable, that his or her continued existence is legally less important than that of healthy human beings (whose lives are still protected against suicide).
Disability groups have long pointed out that one reason assisted suicide is popular is that people who are severely disabled are just not very important to many of us. We may not really care whether they get pressured into killing themselves. If they choose instead to live, they do so knowing that they do not count for much any more.
More importantly, once an ailing grandmother has been given a way out through the option of assisted suicide, her freely chosen suffering will no longer seem to call for as much family compassion or community support. As Dr. Ezekiel Emanuel, a cancer specialist and ethicist (later appointed by former President Barack Obama as a healthcare advisor) once explained,
Broad legalization of physician-assisted suicide and euthanasia would have the paradoxical effect of making patients seem to be responsible for their own suffering. Rather than being seen primarily as the victims of pain and suffering caused by disease, patients would be seen as having the power to end their suffering by agreeing to an injection or taking some pills; refusing would mean that living through the pain was the patient’s decision, the patient’s responsibility. Placing the blame on the patient would reduce the motivation of caregivers to provide the extra care that might be required, and would ease [their] guilt if the care fell short.
Many relatively feeble persons already think they are a burden on others. But now they will think that they themselves, rather than illness or age, are to blame for the trouble they feel they impose.
Living a selfish life . . . by not dying
In choosing to continue to live in great dependence, moreover, a grandmother may be resented as deeply selfish, preferring to benefit herself at a heavy cost to those around her. And as the benefit she receives grows smaller in their eyes—as she nears death or becomes more laden with pains or disabilities—her seeming selfishness increases.
She chooses to increase the burden on her family, and on society, for the sake of an ever-smaller benefit to herself.
If she soldiers on to the point where caregivers and others judge her life to be a cost to her as well as to them, she becomes in their eyes irrational as well as selfish.
As the United States Conference of Catholic Bishops has warned, such a person “may . . . be seen as . . . a needless burden on others, and even be encouraged to view [herself] that way.” Her right to choose death thus brings with it a cruel paradox, if she insists on living: as her misery and consequent need for assistance increase, the sympathy and willingness of her family (and of health insurance payers) to sacrifice decrease.
This diminution of respect and concern for the sick will not be limited only to mean or stingy families and communities. If further care really contributed little to a grandmother’s physical well-being, and a painless death were easily attainable, how could anyone forget that fact?
Politeness and love would inhibit candor, but the person with disabilities would still know what her family can’t help thinking: “What an absolute waste of the grandchildren’s college money!”
Some years ago, the Times of London printed a letter in which ninety-year-old Margaret White wrote: “I am happy here in the nursing home with no wish to die. But were voluntary euthanasia to be made legal I would feel it my absolute duty to ask for it as I now have 19 descendants who need my legacy. I am sure I am not alone in this resolution.”
If Ms. White chose instead to live, she would clearly feel guilty of failing in her perceived “absolute duty.” By turning suicide into a right, we present those in greatest need of assistance with a choice between easy death and hard guilt.
A loving grandmother may constantly wonder whether she is being too selfish even in continuing to eat, when the money for her food could have been used for some better purpose. Agonized by guilt, she may find herself drowning in a sea of resentment, fearing that she will be remembered as a selfish human being who died a dishonorable death.
Dependence does not negate human dignity
A leading American legal theorist, the late Ronald Dworkin, has emphasized the disdain that may accompany this resentment, writing: “We are distressed by, even disapprove of, someone . . . who neglects or sacrifices the independence we think dignity requires.” For Dworkin, a person who chooses to live in great dependence denies that he is someone “whose life is important for its own sake.”
Dworkin can be heard here to echo that great nineteenth-century atheist who sought to purge our society of the remnants of Christian compassion. Friedrich Nietzsche urged prophetically: “To go on vegetating in cowardly dependence on physicians and machinations, after the meaning of life, the right to life, has been lost, that ought to prompt a profound contempt in society.”
Nietzsche complained that Christians (at least in his day) stand against such disdain for the dependent:
If the degenerate and the sick . . . are to be accorded the same value as the healthy . . . then unnaturalness becomes law — This universal love of men is in practice the preference for the suffering, underprivileged, degenerate: it has in fact lowered and weakened the strength, the responsibility, the lofty duty to sacrifice men . . .
The species requires that the ill-constituted, weak, degenerate perish: but it was precisely to them that Christianity turned as a conserving force.
Nietzsche said he was searching for “a thoroughgoing practical nihilism.” But, unsurprisingly, he found nihilism to be a hard sell. He mused, “Problem: with what means could one attain to a severe form of really contagious nihilism: such as teaches and practices voluntary death with scientific conscientiousness (—and not a feeble, vegetable existence in expectation of a false afterlife—)?”
Will Nietzsche’s “problem” finally be solved in our day? Will our very old, our very sick, our very incapacitated be convinced by a newly celebrated right to assisted suicide that they are contemptible burdens if they do not “autonomously” choose death?
Each withdrawal of protection against suicide endangers not only the lives but also the human dignity and support relationships of persons with burdensome infirmities. By contrast, when our law and culture treat suicide as a tragic rather than a benign choice and refuse to facilitate it, those most in need are more likely to receive sympathetic help rather than guilt-inducing blame and resentment.
Opponents of the legalization of assisted suicide thus have not only strong pro-life arguments but also telling quality-of-life arguments that they need to bring up whenever any right to suicide is being debated.
Richard Stith is a senior research professor at Valparaiso University Law School. This article originally appeared in Public Discourse, the online journal of the Witherspoon Institute of Princeton, New Jersey. It is reprinted with the permission of the author and Public Discourse. It is available online: https://www.thepublicdiscourse.com/2018/09/39887/
Oral Submission to the Justice Select Committee on the End of Life Choice Bill
The Nathaniel Centre – the NZ Catholic Bioethics Centre
11 June 2018
The Bill being considered seeks to legalise both euthanasia and assisted suicide – we use these terms because legally and ethically they are the most precise, but for the purposes of this submission we will use the term EAS to refer to both.
We are strongly opposed to the EOLC Bill – it has many problems which are covered in our written submission. These include:
- Imprecise terminology
- Misunderstanding of the well-accepted ethical distinction between giving pain relief which may inadvertently shorten a life vs the intentional ending of a life using lethal medication
- Broad and vague criteria around eligibility
- Unbearable suffering is determined against subjective measures
- An absence of effective safeguards, particularly measures to detect and prevent coercion
- A naïve promotion of individual choice that fails to recognise the critical difference between choice and autonomy and fails to consider the broader social consequences of EAS
- Potentially negative consequences for those with mental illness and persons with a disability
- The unnecessary inclusion & involvement of doctors
In addition, it is increasingly apparent that, in places where euthanasia is available, the practice is contributing to a disturbing new norm around dying. Thus, Professor Theo Boer, a former member of a Dutch Review Committee and long-time supporter of assisted death has now “become increasingly hesitant to advise countries to legalize physician assisted dying”. He writes about “a gradual shift” where EAS has gone from being an act of “last resort” to becoming a “default way to die.” This is evident in the year-upon-year significant increase in numbers which belies the claim that these laws can be restricted to the so-called ‘difficult cases’.
Even in Oregon, where numbers are relatively speaking much lower than in Belgium or the Netherlands, there is, annually, a steady and steep climb in the numbers.
We have reflected on the arguments commonly used to promote EAS. We think the strongest argument coalesces around the hard cases that are routinely held-up by proponents of EAS. We understand there are those, MP’s included, who feel the need to somehow provide a ‘small back door’ for the “small but significant group” of people (and that’s a phrase from the Explanatory Note of the Bill) who fall into that category.
Putting aside for a moment the question as to whether it is even possible to safely create a small back door, and we doubt it is possible, it is obvious that the EOLC Bill will not provide this. Why? Because the very broad eligibility criteria, combined with the subjective calculation of unbearable suffering and the use of vague terms such as “advanced decline” will, in practice, create a ‘four-lane motorway’ access to assisted death in New Zealand for a very broad range of people. We argue this will in practice include people with depression and mental illness and other people who are not imminently dying.
Interestingly, and concerningly, we note that various submitters who have already presented to you were reported as arguing that the Bill in its current form is far too narrow!
We reject, in the strongest possible terms, the idea that, quoting again from the Explanatory Note, “evidence and developments have established that there are serious problems with the current state of the law in New Zealand.” ‘What evidence?’ we ask? ‘What developments?’
That is not to say that there are not people who are still experiencing bad deaths, deaths with unnecessary pain or suffering. Yes, things need to get better. Palliative care is great for those who can access it, but is not equally or equitably accessible. There is a problem, but EAS is not the ethical or caring answer.
We want to leave you today with two words: ‘TAKE CARE’. These two, simple words have a rich and multi-faceted meaning in the context of this debate.
- TAKE CARE as in, ‘be wary’ – step very carefully. This Bill is not what it seems. If EAS is considered a reasonable response to self-defined suffering, including existential suffering, then it must expand to include the suffering of others such as children, those with mental illness and those unable to give consent. Peer-reviewed research shows that safeguards overseas are not effective and that the laws are routinely violated – cases not reported and people euthanised without giving consent. Why would it be different here?
- TAKE CARE as in, let’s show nothing other than EXQUISITE CARE to those in our society who are most vulnerable and most dependant. We know, to our shame, that more and more of our elders are experiencing social isolation. We know loneliness is a predictor of poorer health outcomes, including depression. We know that even mild depression, which can be hard to detect, can skew people’s perceptions of their worth and desire to live. We know elder abuse is on the rise, despite everyone’s best efforts to prevent it, and the problem with elder abuse is not a weak law. There has never been a more dangerous time to implement assisted death in New Zealand.
- TAKE CARE as in, let’s promote a cultural shift in our society so that those who need to be cared for are empowered to accept care from others - indeed to see such care as their right. In real life, people with life-limiting illnesses veer between hope and despair – the desire to prematurely end one’s life is a fluctuating one. They may be afraid of how their illness will develop and what suffering it may bring. Many are worried about the impact of their illness on those around them, inevitably expressed in terms of ‘not wanting to be a burden’. It is of great concern that the fear of being a burden is increasingly becoming a part of our social narrative. People need hope above all – this Bill does the opposite by confirming people’s worst fears, including the fear of being a burden.
- Finally, TAKE CARE as in, take care of our medical system by keeping EAS right out of healthcare. Assisted death is not part of medical care. It will introduce a whole new negative dynamic into the doctor-patient relationship. If you really want to introduce an assisted death regime in New Zealand, at least keep it out of medicine. Doctors are not necessary for such a regime and do not want to be part of this. EAS violates medical ethics. It is opposed by all the major medical associations in New Zealand such as NZMA, ANZSPM and Palliative Care Nurses as well as Hospice NZ. As the NZMA noted in their written submission to this Committee, we should not ask doctors to be ‘life takers’ as well as ‘life savers’.
To conclude: This Bill will contribute to making NZ a less inclusive society for those who are least functional and most dependant on others for care.
Is this really the sort of society we want? We can do better when it comes to providing and delivering good quality palliative care at the end of life. We need to do better, especially when it comes to valuing our elders. We need to challenge the narrative ‘better off dead than disabled’ rather than buy wholesale into that narrative which is what this Bill does.
Were parliament to make EAS legal in New Zealand right now, it would be neither safe nor, after a relatively short time, would it be rare.
Euthanasia and the Common Good
In this article, Charlotte Paul reflects on some of the wider and often ignored consequences of legalising euthanasia; on the dying process, on the roles of doctors and on the impact of euthanasia on suffering. While euthanasia is offered as a means of relieving suffering, its very availability may well exacerbate suffering for many.
This article is available online at: https://corpus.nz/euthanasia-and-the-common-good/
EDITORIAL ‘You do it, Mr Seymour’: Euthanasia is not part of healthcare
A senior New Zealand doctor, Ross Boswell, made headlines recently with his submission to the Justice Select Committee on the End of Life Choice Bill because of his tongue-in-cheek suggestion that MPs and mayors carry out euthanasia since doctors are ethically barred.1
The reaction of many to this will surely be: ‘Well that is simply ridiculous’, and I would be one of those. But, that does not mean I disagree with Dr Boswell. As I see it, the point being made is that it is equally ridiculous to think that the agents and gate-keepers of euthanasia should be doctors or health professionals. Yet this point is lost on most people, MP’s included, who assume, uncritically, that the medical profession and euthanasia belong together.
Dr Boswell argues that the ethical proscription of euthanasia by the World Medical Association, reflected in the position statement held by the NZMA and many other health professional organisations, is for practical and clinical reasons: “… patients must be able to consult their doctors in the clear knowledge and trust that the doctor is working to provide care and support, not sizing them up to administer a lethal dose of medication.”2 As Palliative Care doctor Tim Harlow has stated: “We are worried about the very real potential for normalising something that is not, and should not be considered, normal and should not be a part of routine medical practice”.3
It is well known that the original proponents of euthanasia in the Netherlands wanted it to be 'self-determined', that is, available as a personal choice without the need to fulfil any particular conditions such as being terminally ill – effectively euthanasia-on-demand. However, it was originally deemed necessary for doctors to be involved in order to gain public acceptance for the practice and to precipitate the passing of legislation. With the debate in the Netherlands now centring on introducing a ‘peaceful pill’ (allowing people who believe their lives are ‘complete’ to kill themselves without reference to or without the help of a doctor), that goal is likely to be realised soon. In the meantime, groups such as de Einder openly acknowledge they are already promoting such pills illegally on the basis that every person has the right to end their lives without outside interference.4 Bizarrely, but not surprisingly, the fact that it is already happening illegally is one of the key arguments used for making the suicide pill legal; ‘Legalisation is essential for preventing abuse,’ it is claimed.
Over the years, various researchers have studied the effects on doctors of being involved in euthanasia. One such qualitative study by van Marwijk et al (2007),5 titled ‘Impact of euthanasia on primary care physicians in the Netherlands’, used four focus groups involving a total of 22 primary care physicians (PCP’s). It provides a number of useful insights capable of informing the current debate in New Zealand.
Reflecting on the first occasion they were involved, many PCP’s described “problematic, and sometimes even traumatic experiences, such as loneliness, mixed feelings and contradictory emotions”.
While some PCP’s had “‘heroic feelings’ because they were able to help someone”, others “regretted their first performance for reasons such as ‘insufficient awareness of the other palliative possibilities’” or “‘having been manipulated by the family or the patient’”.
Many PCP’s describe feeling relief after the event and feeling satisfaction when it went well, however “a number of physicians remarked that the relief was greatest if the request for euthanasia or assisted suicide was withdrawn.”
Many PCP’s in all groups talked about feelings of loneliness after the event.
PCP’s mentioned various feelings concerning the role of families, “varying from gratitude and satisfaction to pressure, manipulation and tension and sometimes even conflict.”
The study authors conclude: “Euthanasia is a drastic, and sometimes even traumatic event … [The PCP’s] cannot simply resume their daily routine afterwards.”
While some PCP’s said they had no problems or “considered it their duty” to perform euthanasia, many others “are wrestling or have wrestled with the dilemma of why they, as doctors, have to end life or perform euthanasia.”
Most PCP’s have become more reluctant over time to perform euthanasia and a number have decided not to do it.
One quote in the study is particularly instructive regarding the impact of euthanasia on patients. “I hate it. The patient is no longer granted the time for a natural dying process. He’s saddled with the question ‘when do I want euthanasia?’. To have to decide about the moment of death has created enormous unrest around the deathbed.”
There is much to learn from the overseas experience of countries such as the Netherlands. Four lessons stand out, however: (i) Euthanasia is not part of healthcare; (ii) the categories will inexorably widen; (iii) its very availability will impose a significant burden on doctors and (iv) create enormous unrest for families and patients while also burdening patients.
Dr John Kleinsman is director of The Nathaniel Centre, the New Zealand Catholic Bioethics Centre
3 Harlow T. BMJ Supportive & Palliative Care 2015;5:122–123.
4 See https://www.deeinder.nl/
5 Journal of Palliative Medicine (2007), 21, pp. 609-14.
Submission to the Justice Select Committee: End of Life Choice Bill
Staff of The Nathaniel Centre
We oppose the End of Life Choice Bill for a range of reasons laid out in this submission, primarily because: (i) it does not and cannot provide adequate safeguards against coercion; (ii) in giving the choice of euthanasia or assisted suicide to a few, we believe it will severely constrain the choice and/or ability for many others to continue to live; (iii) the practices of euthanasia and assisted suicide contradict medical ethics and are the antithesis of ethical healthcare.
While religious arguments have their own validity within a faith-based framework, we recognise (i) they will not be compelling for persons who do not share that faith perspective and (ii) they are not sufficient for shaping public policy in a secular society. For this reason, our submission will focus on arguments of a social, cultural, ethical and pragmatic nature that can be appealed to by all persons irrespective of their religious background.
The motivation that underpins our opposition to the legalisation of the End of Life Choice Bill is ‘compassion’ – compassion for the many who will be negatively affected by the passage of this Bill, including those who are most vulnerable to the suggestion that they will be ‘better off dead’ because they will come to perceive themselves, or be perceived by others, as being a burden – whether financial, physical, social or emotional. As has happened overseas, changing the law will contribute to a new ‘norm’ for those who are at the end of life, one which will require them to justify why they would not avail themselves of an early death. For example, “In Belgium, a tendency of family members to consider the dying process as undignified, useless and meaningless, even if it happens peacefully, comfortably and with professional support, has been described.”1
The End of Life Choice Bill, in its current form, speaks of “assisted dying”, a term that we regard as imprecise. It fails to differentiate acts of ‘assisted suicide’ from acts of ‘euthanasia’, a difference that has significant legal, political, ethical, practical and social implications. In addition, the term “assisted dying” fails to adequately distinguish between ethically acceptable acts such as withdrawing or withholding treatment (when it is no longer medically indicated) and the intentional ending of a person’s life.
We note that the End of Life Choice Billavoids the use of the term suicide, no doubt because of a view held by some that the premature death of those with a terminal illness can be neatly distinguished from other more ‘tragic’ forms of (non-assisted) suicide. Against this view, we wish to remind you that the Health Select Committee Report clearly debunked this understanding:
Most advocates of assisted dying argued that suicide and assisted dying should not be conflated. They often made a distinction between some forms of suicide and others, suggesting that they can be categorised as either ‘rational’ or ‘irrational’. This distinction was not supported by any submitters working in the field of suicide prevention or grief counselling. On the contrary, we heard from youth counsellors and suicide prevention organisations that suicide is always undertaken in response to some form of suffering, whether that is physical, emotional, or mental.2
The Justice Select Committee should not be distracted by those who suggest that the deliberate and intentional premature ending of lives in cases of terminal illness or unbearable suffering is something other than assisted suicide. If we are to have an open and honest debate about the benefits and risks of intentionally ending life as a way of dealing with personal suffering then we should not be afraid to call it what it is.
We invite the Justice Select Committee to consider a fundamental question: Is it practically possible to carve out exceptions from the current law that will safely allow assisted suicide in certain circumstances (such as terminal illness or any irreversible condition) while discouraging it absolutely in other circumstances? We, along with many others, do not believe that this is practically possible.
For reasons of linguistic as well as ethical and legal precision, we use the terms ‘assisted suicide’ and ‘euthanasia’ (or EAS to refer to both practices) throughout this submission.
Our Approach to the Issue of Euthanasia and Assisted-Suicide (EAS)
We support the concept of people with advanced progressive illnesses being cared for in a holistic way that adequately addresses their need for effective pain relief as well as having their psychological and spiritual needs/suffering addressed. We believe that good palliative care can achieve this, so long as it is able to be sourced equitably by all New Zealanders.
It is acknowledged that even with the best available care, there remain a small number of extreme cases where a person continues to experience intractable physical pain. Likewise, we acknowledge that some people facing an imminent death may continue to experience extreme personal distress of an existential nature that cannot always be adequately managed. In these rare circumstances there already exists the ethical and legal option of ‘palliative sedation’ as a means of last resort. As noted by the Australian and New Zealand Society of Palliative Medicine: “Palliative sedation for the management of refractory symptoms is not euthanasia.”
We acknowledge the stories of ‘terrible deaths’ sometimes cited by proponents of EAS. We are also aware of the advances made in palliative care over more recent times, as well as the fact that not everyone may have had access to the best palliative care. When assessing such stories, an important question is how such deaths would be handled in the light of modern-day palliative care.
The Impact of Context on Choice and Autonomy
In the debate about euthanasia and assisted suicide, much is made, rightly, of ‘individual autonomy’ and the ‘right to choose’. However, what is not often discussed in these debates is the fact that ‘autonomy’ and ‘choice’ are both dependent on and shaped by the social, political and economic context in which we live.
The rise in abuse of our elders3, as well as documented evidence of greater social isolation and loneliness amongst people over 65 years4, highlights a significant cultural shift in our society in recent times – the devaluing of age. Those working in the aged care sector note that many disabled and elderly people express the view that they have become, or the fear that they will become, an unwelcome burden on family and society. Legalising euthanasia or assisted suicide will only exacerbate this situation. It is not an overstatement to describe this as a form of institutionalised abuse of our elders.
Advocates of EAS often refer to the predominance of ‘white, well-educated, well-insured’ recipients of assisted suicide in Oregon as evidence that the ‘vulnerable’ are not at risk from legalised assisted suicide and/or euthanasia. However, the notion of ‘vulnerable’ being appealed to in these instances is limited. For the sick and disabled, the realities of power inequity – between and within families, between patients and medical professionals, between recipients of care and caregivers – come into play for people who, in other contexts and conditions, would not ordinarily be classified as vulnerable.
Laws do not provide effective protection for vulnerable groups; rather, they work by providing recourse to justice after the event. We have good laws to prevent the exploitation or abuse of workers, of children, of women, of tenants, of elders, yet we know there are many instances where these laws fail to prevent such exploitation. EAS legislation will be no more be able to ensure that only those who really ‘choose’ will qualify for assisted suicide than the many other instances of legislation that have failed to protect against abuse. The key difference between an EAS regime and other laws is that there is no satisfactory recourse to justice after a person has died.
While we live in a society that highly values choice, there are numerous examples of limiting choice for the sake of the common good, and more specifically in the interests of protecting the most vulnerable. Maintaining the absolute prohibition of euthanasia and/or assisted suicide is demanded at this time because it is not possible to adequately protect the lives of those who are most vulnerable in the current ageist and ableist societal context. The so-called safeguards in the End of Life Choice Bill do not and cannot protect against the risks of coercion that we have described.
Need for equitable access to Palliative Care
The multi-disciplinary teams providing palliative care report that, when properly funded palliative care is available, palliative care teams are well able to provide peaceful and dignified deaths in even the most difficult cases.
We readily acknowledge that not all people in New Zealand currently experience a good death. The ethical and caring response to this situation is to prioritise the availability of quality palliative care for all New Zealanders. In 2013 the Palliative Care Council of New Zealand noted that the main failing in palliative care is the lack of access and insufficient funding, as well as poor understanding as to what palliative services can do.5
Because the End of Life Choice Bill does not legally mandate palliative care, it does not guarantee real choice and, in the absence of other choices, will operate as a ‘Hobson’s choice’. This constitutes an unacceptable risk, in particular the risk that people will choose EAS out of desperation.
To conclude, the law being proposed will be too dangerous in the current environment for all those who are vulnerable to the suggestion that they will be ‘better off dead’ than being a burden, or those who find themselves unable to access quality end-of-life care.
Involvement of the medical profession
We note that EAS contravenes the professional Codes of Ethics of the World Medical Association and, within New Zealand, the New Zealand Medical Association, the Australian and New Zealand Society of Palliative Medicine, Palliative Care Nurses New Zealand, the Health Professionals Alliance and Christian Medical Fellowship.
The legal, cultural, social and ethical questions surrounding the practice of EAS need to be considered separately from the question about who the ‘agents’ of such deaths might be. It is incorrect and unwise to assume that EAS belongs within medicine.
As well as being incompatible with the profession of medicine, the active involvement of the medical profession in EAS is unnecessary. Were the New Zealand Parliament ever to legalise EAS, it could be implemented without health professionals being directly involved. A precedent for this already exists in Switzerland.6
Jones et al.,7 note that requests for euthanasia in Belgium are more often for non-terminal conditions, that requests often occur in the very early stages of a patient’s disease and that requests often relate to existential or mental reasons that lie outside of the proper role and competence of the doctor.
The proposed End of Life Choice Bill places a doctor in the position of being both life takers as well as life savers. If a doctor is willing to use the assisted suicide or euthanasia option, he/she cannot be devoted fully to the patient’s life interests, interests which, for many patients, will almost certainly go beyond what they may think they want at a particular point in time.
The numbers of deaths from EAS continue to increase in both the Netherlands and Belgium, illustrating the fact that, once legalised, EAS takes on its own momentum. There are well-documented shortcomings with the practice of EAS in both Belgium and the Netherlands. Euthanasia is carried out without explicit consent8 and the proportion of patients referred for psychiatric assessment is much lower than would be expected given evidence of the prevalence of depression and other mental illnesses in patients suffering terminal illness.9,10
In the Netherlands it is estimated that only 4 percent of all requests for physician-assisted death are referred for psychiatric consultations.11 In Washington State in 2016, 5 percent of participants of the Death with Dignity Act were referred for psychiatric/psychological evaluation.12 In Belgium, 9.5 percent (307/3239) of patients whose death was not imminent, were referred to a psychiatric consultant for the years 2012/13.13
There has been a widening of the categories that ‘qualify’ for euthanasia/assisted suicide to include children and patients with dementia and mental illness in both the Netherlands and Belgium. In addition, there are increasing numbers of cases of euthanasia approved where there has been a diagnosis of psychiatric disorder or dementia. 14,15
There is clearly a degree of normalisation of assisted suicide in Oregon, evidenced by the continuing increase in numbers and the failure to refer for psychological examination. The proportion of people referred for psychiatric assessment in Oregon averaged 22 percent over the first five years after legalisation, compared with the average of 3.4 percent the most recent five years.16
One of the requirements of the Death with Dignity Act in Oregon is that “the patient has a terminal illness that would, within reasonable medical judgment, cause death within six months.” Over the period since the DWDA legislation was introduced, 1998-2016, the range between first request and death was 14-1,009 days, that is, from two weeks to 2 years and 9 months.
There is also evidence that the ‘two doctor’ safeguard is easily and frequently being subverted by so-called ‘doctor shopping’ in Oregon as well as in Washington State. A former Medical Director for assisted suicide advocacy group Compassion and Choices has stated that:
… about 75 percent of those who died using Oregon’s assisted suicide law through the end of 2002 did so with the organization’s assistance … In 2008 the proportion of C&C PAS [Compassion & Choices Physician Assisted Suicide] deaths significantly increased to 88 percent (53/60) of all reported deaths. And in 2009, 57 of the 59 assisted suicide deaths were Compassion & Choices clients.
Oregon is often cited as an example where there has been no expansion of criteria; however, there is evidence that EAS advocacy organisations intentionally stifle attempts to expand the scope for the reason that it “would send the wrong message to law makers considering similar laws in other states”.17
The polling data used to support the legalisation of EAS does not reflect the complexity of the issue and nor does it capture people’s informed views. When respondents are given information about the more complex issues concerning EAS, many poll respondents change their minds.
EAS and Disability
“Terminal illness can bring with it disabilities which characterise the situation of disabled people who are happy and contributing members of society - such as incontinence or requiring assistance in dressing, bathing, eating, toileting or in other activities of daily living”18.
Advocates of euthanasia often claim that they do not want to endure the ‘loss of dignity’ that they associate with needing assistance for bathing and toileting at the end stages of illness. They suggest that they would ‘prefer to be dead’.
There is no ‘hard line’ that can be drawn between persons with a grievous and irremediable medical condition who experience unbearable suffering, and disabled people. Legalising EAS will send a strong social message to all disabled people, including those whose disabilities are primarily a function of the debilities associated with age: ‘Better dead than disabled.’
Euthanasia and assisted suicide are not part of healthcare and contravene medical ethics.
The current law may not be perfect, but it provides a clear bright line. Moving the bright line of prohibition would create far more problems than it would ever solve. Apart from the intractable problems of consent and coercion, moving that bright line to some new position would merely create new ‘hard cases’ on the boundary.
The promotion of ‘autonomy’ or ‘choice’ for a few is an emaciated foundation on which to introduce a practice that will threaten the choices of many others.
There is no ‘hard line’ that can be drawn between persons with a grievous and irremediable medical condition who experience unbearable suffering, and disabled people. Legalising EAS will send a strong social message to all disabled people, including those whose disabilities are age related: ‘Better dead than disabled.’
In bioethics there is a well-known principle, the Precautionary Principle, which states that if an action or policy has a suspected risk of causing harm then, in the absence of empirical evidence that the action or policy is not harmful, the burden of proof that it is not harmful falls on those supporting the action or policy. This means it is incumbent on proponents of change to provide indisputable evidence that any regulatory system would be sufficiently safe.
‘There is no convincing case to be made for a safe EAS regime in New Zealand at this point in time.’ In the current context and given the legally available and ethical alternatives to EAS that already exist, a commitment to those who are most vulnerable because of old age and/or disability demands that New Zealand follow the many other jurisdictions who, in recent years, have reached the conclusion that euthanasia and assisted suicide are quite simply too dangerous to introduce.
For reasons of space, the references have not been included. The full submission, with references, can be found on the website of The Nathaniel Centre, www.nathaniel.org.nz
Editorial: Bioethics, Politics and Slovenly Language: Lessons from History
Bioethics, closely connected as it is with philosophy, is intimately concerned with the intellectual frameworks that shape meaning. For that reason, attention to language is critical when we come to reflect on bioethical issues such as euthanasia/assisted suicide or abortion, both of which are currently topical in New Zealand.
In his work, Politics and the English Language, the famous writer George Orwell writes that the English language “becomes ugly and inaccurate because our thoughts are foolish, but the slovenliness of our language makes it easier for us to have foolish thoughts.” Psychiatrist Robert Jay Lifton, in his ground breaking 1986 book The Nazi Doctors: Medical Killing and the Psychology of Genocide,1 takes Orwell’s observation a step further, identifying and exploring the link between language and the ‘dangerous’ thoughts of the Nazi regime which underpinned the systematic killing of disabled people, Jewish people and others such as the Romani, all deemed to be “unworthy of life”.
Australian psychiatrist Marina Vamos puts it well: "The categorisation of words creates instant bias toward one interpretation or another. Thus, the words we choose not only reflect what we are trying to say, but also control meaning in and of themselves."2
These days, comparisons with what happened in Germany in the 1930’s and 40’s are generally avoided in bioethical discussions, labelled as sensationalist and perceived by hearers as providing a ready-made excuse to discredit whatever argument is being made. However, without suggesting that the shocking actions of the Nazi’s can be equated with the practices of euthanasia or abortion, this part of our history contains important lessons about the way in which society’s attitudes to certain practices can be radically changed through an intentional process of ‘moral reframing’ that is intimately linked to the selective use of language, including the use of euphemisms.
There are at least two (closely related) insights that emerge from a close reading of Lifton’s book that are relevant to the contemporary debates we are having about euthanasia and abortion: the way in which, in the 1930’s, certain key figures in Germany used language (i) to remove the psychological and cultural barriers that previously made the holocaust unthinkable and (ii) to medicalise the process in order to blur if not destroy the bright line boundary between healing and killing.
Lifton identifies as crucial a work published in 1920 by two distinguished German professors in which the concept of killing those unworthy of life is professionalised and medicalised as “‘purely a healing treatment’ and a ‘healing work’” (p.46). Thus emerged a notion of “Killing without Killing” (p. 445). Lifton reports that a “leading scholar of the Holocaust told of examining ‘tens of thousands’ of Nazi documents without once encountering the word ‘killing’” (p. 445). For what was done to the Jews there were different words, words that perpetuated the psychological numbing: “the ‘Final Solution’, ‘possible solutions’, ‘evacuation’, ‘transfer’ and ‘resettlement’ … The word ‘selection’ could imply sorting out the healthy from the sick …” (p. 445). Regarding the “mercy killing” of young infants with deformities, Lifton quotes a German doctor he interviewed: “All was to be understood as a responsible medical process, so that … ‘the parents should not have the impression that they themselves were responsible for the death of this child’” (p. 51).
What can we learn from this, and how is it relevant to the current discussions about euthanasia/assisted suicide and abortion that are happening in New Zealand?
David Seymour’s End of Life Choice Bill provides a classic example of the selective and slovenly use of language to misrepresent what is actually being proposed. In the first instance his preferred term, “assisted dying”, fails to provide clarity about precisely what is being proposed. In the words of one commentator: It “is a vague term and could mean no more than the important service of rearranging the pillows for a dying person”. Secondly, and critically, the term fails to distinguish between ‘euthanasia’ and ‘assisted suicide’, two very different types of life-ending interventions which have vastly different implications and outcomes. Thirdly, the term is grossly inaccurate insofar as Seymour’s Bill does not apply only to persons who are dying – it can be accessed by people with “a grievous and irremediable medical condition … in an advanced state of irreversible decline in capability” who consider their suffering intolerable. Referring to euthanasia and assisted suicide as ‘assisted dying’, because it intentionally disguises what is really happening, is a clear case of promoting “killing without killing”.
Meanwhile, David Seymour’s publicly stated refusal to acknowledge the important ethical distinction between intentionally ending a person’s life and the medically accepted ethical practice of withdrawing or withholding futile treatment is an example of his desire to reinforce the link between medicine and the intentional premature death of people. So too is his insistence that euthanasia/assisted suicide are part of medical health care, illustrated by the fact that his Bill puts doctors front and centre as the direct agents for ending life. In contrast, the idea that euthanasia and assisted suicide are part of medical care is rejected by many, including the Scotland Select Committee which, in 2015, found that both supporters and opponents of the Assisted Suicide Bill it was considering acknowledged that the involvement of healthcare professionals in assisted suicide, even if it were legal, would not be “medical treatment”.3
The same behaviours described above for euthanasia are a feature of discussions about abortion. For example, in September 2015, the International Planned Parenthood Federation produced a pamphlet titled How to Report on Abortion, which states up front: “The way abortion is presented in the media can have a major influence on people’s thinking.” The document then advises journalists to use the terms “embryo” or “fetus” rather than “baby” or “unborn baby/child”; “Pregnant woman” rather than “mother” and speak of “a woman’s right to life and health”, rather than the ‘rights’ of the unborn child.4 In defence of its position the document then argues, without reference to evidence, that “the term ‘unborn child’ is a recent anti-abortion invention and a contradiction in terms. Human rights only begin at birth.” Among other things, this assertion ignores a long-standing and enduring social convention that goes back thousands of years, that of speaking of a pregnant woman as ‘being with child’.
The medicalisation of abortion is also, increasingly, a feature of the debate in New Zealand. Thus, for example, Terry Bellamak, National President of ALRANZ Abortion Rights Aotearoa, has spoken about the need to transform abortion from a criminal matter to a health matter. Similarly, the Law Commission of New Zealand has been instructed by the Justice Minister, Andrew Little, to consider “how best to ensure New Zealand’s abortion laws are consistent with treating abortion as a health issue.” Making abortion solely a ‘health’ issue is of particular concern from an ethical and moral perspective because this terminology puts the whole focus on the woman who is pregnant and thereby obscures the fact that two human lives are involved (a fact not lost on well-known abortion advocate Dame Margaret Sparrow who very recently acknowledged that “both [euthanasia and abortion] involve loss of life”5). Once again, the selective use of language and the employment of a reductionist argument serve to avoid the unpalatable but inescapable reality that abortion involves the intentional ending of a human life – yet another example of “killing without killing”.
Attention to our deep seated and spontaneous moral feelings is an integral part of robust ethical deliberation, part of the process of making a properly informed conscientious decision, and a critical ingredient of moral integrity and moral honesty. If the discussion of controversial issues raises such feelings, then we ought to pay attention to these feelings rather than deliberately ignore them. To use language to avoid the stirrings that are part of our deepest selves is to delude ourselves and to delude others. It is to foster ‘denial’ at both the personal and societal level. The deep moral uncomfortableness that is associated with the ending of life that characterises both euthanasia/assisted suicide and abortion should, rather, be seen as an invitation for ethical pause and deeper introspection.
The alternative is becoming all too common – a cheapened form of ethical discussion and a superficial understanding of the complexity of the issues involved. Whatever laws or policies we embrace, we should be absolutely honest and truthful about what is involved, and it is only the honest naming and describing of our actions that will enable that.
If we really want to embrace euthanasia and/or assisted suicide then let’s call them for what they are – the intentional ending of human life – rather than dressing them up as something more palatable. If we really believe that “any reason for an abortion is a good reason”6 and if we really want to enable abortion for any reason, then let’s call abortion for what it is – the intentional ending of a human life – rather than dress it up as something more palatable.
And if, in using honest and clear language, we encounter doubts arising from our deepest moral sensibilities, then let’s stop and think deeply about the wisdom of the laws being proposed.
We must not forget the lessons of history. Slovenly language goes hand in hand with foolish if not dangerous thoughts. Language should be at the service of truth and wisdom rather than being made the slave of personal or political ideologies.
Dr John Kleinsman is director of The Nathaniel Centre, the New Zealand Catholic Bioethics Centre
1 Lifton, R. J. (1986). The Nazi doctors: Medical Killing and the Psychology of Genocide. New York: Basic Books.
2 Vamos, M. "Physician-Assisted Suicide: Saying What We Mean and Meaning What We Say." Australian &
New Zealand Journal of Psychiatry 46, no. 2 (2012).
3 See Health and Sport Committee, Stage 1 Report on Assisted Suicide (Scotland) Bill at http://www.parliament.scot/S4_HealthandSportCommittee/Reports/her15-06w-rev.pdf, paragraph 302.
5 Sparrow, Margaret J. “Euthanasia and abortion”. NZMJ 19 January 2018, Vol 131 No 1468.
6 Terry Bellamak, NZ Herald, 6 April 2018. Accessed 11 April 2018.
The great divide in ethics over the mystery of human life
By Margaret Somerville
This article is available at: https://www.mercatornet.com/features/view/the-great-divide-in-ethics-over-the-mystery-of-human-life/20749
Unnatural selection: How animal euthanasia undermines the case for human euthanasia [SYNOPSIS ONLY]
By Grace Carroll
The full article is available by subscription to The Nathaniel Report
Palliative Care: the Pearl of Great Price
By Katherine Pettus
Katherine Pettus depicts Palliative Care as a ‘subversive’ element in a health system that is focused on ‘cure’. Moving vulnerable and ‘incurable’ patients from the margins to the centre of health practice not only transforms the value of the patients and their families but also allows for the realisation that we are all vulnerable, and that while domination and control are futile, ‘accompaniment’ is transformational.
Youth Offending: Is it About Justice or Health?
By Sue Buckley
A recent report from the Children’s Commissioner for England1 investigating undiagnosed neurodevelopment conditions amongst young people in custody found that these young people experienced higher rates of a range of neurodevelopmental disorders than the general population of young people. These conditions included: generalised learning disability, specific reading difficulties, impaired language skills, attention deficit hyperactivity disorder (ADHD), autism spectrum disorder, traumatic brain injury, epilepsy and foetal alcohol syndrome disorder. The report notes, however, that children who have such conditions may exhibit few or no overt signs of brain damage or difficulties in managing their feelings, but may lack the language to understand or describe their feelings or symptoms, which can easily spill out into difficult behaviour.
Evidence from New Zealand studies indicates that young people in custody here experience similar difficulties. One study found that the occurrence of mental health issues (conduct disorder, mood disorders, psychosis, post-traumatic stress disorder) for males in a youth justice facility was 56 percent, and was higher for females at 73 percent.2 For young people in secure Child, Youth and Family (CYF) residences it has been found that 49 percent report ‘worrying a lot about things,’ 37 percent had four or more somatic symptoms (emotional distress associated with unexplained physical symptoms), 25 percent reported depressive symptoms, 49 percent reported feeling anger and irritability, 30 percent had self-harmed, and 20 percent had attempted to end their life. In addition, almost one-half (44 percent) of these young people had poor access to dental health care, while 19 percent failed a hearing screening test, and 24 percent failed their vision screening test.3 Another New Zealand study of a sample of youth offenders in prison found 53 percent with symptoms of ADHD4, and a study of 204 young people admitted to youth justice secure residences found most young people (66 percent) had alcohol/drug issues, 38 percent experienced difficulty with anger/irritability, 30 percent were depressed/anxious, 30 percent reported somatic complaints, 24 percent reported thought disturbance (only among boys), and 17 percent experienced suicidal ideation.5
A review of literature undertaken in the New Zealand by The Werry Centre concluded that “prevalence rates of mental health issues of between 40% and 60% highlight that mental health and AoD [alcohol and other drug] issues cannot be ignored in the Youth Offending population. The incidence of psychiatric disorders and AoD issues are even more pronounced among those youth who are detained or incarcerated.”6 In addition, US data indicates that youth offenders in custody are up to four times more likely to complete a suicide than young people in the general population.7
There are also high recidivism rates for young offenders. Offenders who begin offending during their teenage years are more likely to become persistent offenders, particularly if their initial offending results in a prison sentence. In a study of reconviction rates for a New Zealand cohort of released prisoners, it was found that those under 20 had a reconviction rate of 88 percent and a reimprisonment rate of 71 percent within 60 months. Released prisoners in the under 20 age-group were twice as likely to return to prison as those aged over 40 years.8
In New Zealand, the Youth Justice system, and particularly its use of family group conferences, takes a ‘restorative’ approach to offending by young people, that is, one which seeks a balance between the welfare and justice models of youth justice. The welfare model of youth justice views young people’s offending as primarily a consequence of their background and environments; the focus is on the care and protection of the young person.
The justice model focuses on the offence, advocating for the victim, and for accountability and punishment that reflects the severity of the offence. Critics of the welfare model argue that due process and legal rights may be overlooked and that children and young people, and their families, can experience unwarranted intrusions into, or control over their lives. Critics of the justice approach argue that it ignores the social or environmental contribution to criminal behaviour, that children and young people particularly may not understand court processes, and that focusing on the offence alone can create injustice. New Zealand’s restorative model focuses on the offender accepting responsibility for their crime and on restitution for the victim; the overall intention is concerned with restoring the relationship between the offender and the community.
Among the principles of the New Zealand restorative model are that young people should be diverted from the formal criminal justice system where possible, and that children and young people who commit offences should be kept in the community, unless public safety is an issue. New Zealand’s model for youth justice is rightly praised as an innovative model in that: “the rights and needs of indigenous people were to be taken into account; families were to be central to all the decision-making processes involving their children; young people themselves were to have a say in how their offending should be responded to; victims were to be given a role in negotiations over possible penalties for juvenile offenders; and the model of decision-making advocated was to be by group consensus”.9
However, the high prevalence of a range of neurodevelopmental disorders amongst young prisoners indicates that more needs to be done in the way of supporting the mental health needs of young prisoners and, even more importantly, supporting the health needs of young people before they even get to prison. The very high rates of recidivism for young offenders indicate that having once been in prison, they are very likely to go back. A review of evidence relating to the assessment and treatment of youth with mental health and/or AoD issues concluded: “A reoccurring theme in the literature is that the juvenile justice system is not adequately equipped to meet the needs of youth with mental health and/or AoD issues. Improvement is needed in: coordination of services; availability of trained or specialist staff; integration of services; encouraging community support for success; effective services; and leadership structures”.10 The same review concluded that “The focus on effective programmes and interventions has tended to focus on offending rather than their mental health issues. Further research is needed to increase the recognition of the mental health and/or AoD needs of youth offenders and to both [sic] inform intervention design and service development”.11
While we have different histories and social systems, Norway (with a population of 5.26 million) appears to manage youth offending in ways that avoid imprisonment. It is part of government policy there that no one under 18 years should be imprisoned and there has been a concerted effort to promote the “the mental, physical and social development of young offenders. Imprisonment is viewed as a ‘last resort’ and in January 2015, there were only three young persons (all 17-years old) held in detention”12. In New Zealand 540 young people on average are admitted to secure youth justice residences each year (this figure does not represent the total number in residences at any one time; there are only around 200 ‘beds’ in youth residences and 100 ‘beds’ in youth units in prisons). While Norway has a different approach to justice generally, and a long history of focusing on child welfare, we could perhaps learn from the Norwegian experience where the emphasis is on the wellbeing of the child/young person and on crime prevention rather than crime control, so that all interventions are supportive in nature.13
While there is much to recommend New Zealand’s restorative justice model – its focus on the restoration of the offender with their community, and its effectiveness in reducing the need for formal courts and punitive measures, it has been “less successful in achieving goals of enhancing the wellbeing of the young people who enter the system”.14
The links between mental health disorder, impoverished or abusive environments, substance abuse, and youth antisocial behaviour are well-established. Critically, the links can function both ways – a young person who has experienced abuse which has led to their involvement in youth justice is also more likely to develop a mental health disorder. Considering the high prevalence of a range of mental health, alcohol and drug issues, and learning, language and reading disabilities amongst the young offender population, a greater focus on young offenders’ health needs would be not only compassionate but also beneficial and likely to lead to improved outcomes.
Seeing youth offending as a health rather than a justice issue would have implications for policy and practice. But it would arguably lead to smaller numbers of incarcerated youth and better end results for our young people and our society.
Dr Sue Buckley is a social science researcher and works for The Nathaniel Centre.
- Hughes, Nathan. "Nobody made the connection: The prevalence of neurodisability in young people who offend." (2012).
- The Werry Centre. A Literature Review: mental health and alcohol and other drug screening, assessment and treatment for Youth Justice populations [Internet], P. 20. 2009 Feb. Available from: http://www.werryworkforce.org/sites/default/files/Youth_Forensic_Lit_ReviewFeb09.pdf
- Lambie, I; Krynen, A; Best C. Youth Justice Secure Residences: A report on the international evidence to guide best practice and service delivery. Wellington: Ministry of Social Development, May 2016.
- Ludbrook, M. Youth Therapeutic Programmes. A Literature Review. Wellington: Department of Corrections, 2012.
- Lambie et al., ibid., p. 23.
- The Werry Centre, ibid., P. 26.
- Ibid., p. 57.
- Ludbrook, ibid., p. 3.
- Maxwell, Gabrielle, and Allison Morris. "Youth justice in New Zealand: Restorative justice in practice?" Journal of Social Issues 62.2 (2006), p.243.
- The Werry Centre, op.cit., p. 84.
- Ibid., p.75.
- Winterdyk, John, Georgios A. Antonopoulos, and Ray Corrado. "Reflections on Norway’s juvenile justice model: A comparative context." Crime Prevention and Community Safety 18.2 (2016), p. 111.
- Ibid., p.107.
- Maxwell et al., p.257.
Aging and Dying in Prison
Staff of The Nathaniel Centre in conjunction with Richard Clement
The prison population in New Zealand is growing. At the same time, like the New Zealand population as a whole, it is also getting older.
The State Services Commission reported that between 2000 and 2009 there was a 94% increase in the numbers of prisoners aged 50 years and over.1 Figures from Corrections Department New Zealand show that between 2004 and 2015, the numbers of prisoners over 70 increased from 35 to 188, a more than five-fold increase in 11 years and up from just 51 in 2011.2 This trend clearly outpaces the increase in the numbers of elderly in New Zealand society as well as the growth in the general prison population, something which points to the influence of other factors.
Prison reform advocates such as Kim Workman have identified longer prison sentences, along with more conservative Parole Board decisions, as at least partly responsible for the trend. At the same time, while the Parole Board’s main consideration is community safety, Workman and fellow advocate Phil McCarthy, national director of Prison Fellowship New Zealand, note that there are some elderly inmates who are not being released, even though they are not physically or mentally capable of offending, because of a lack of support in the community and a lack of suitable release places.3
The ageing prison population is creating challenges for a system that was never designed to meet the specialised health needs of older prisoners nor designed to support people with life-limiting illnesses who are dying. Reflecting on the situation in Australia, Chris Puplick, chair of the New South Wales Justice Health and Forensic Mental Health Network Board, believes that the need for palliative care in prisons hasn’t been adequately addressed because prisons have typically been considered places where young, fit, aggressive people were confined and thus have been built for the young and the fit and not the aged and frail.4
In Australia, it has also been reported that crowding meant some elderly prisoners were required to take the top bed in a bunk … corridors or cells could not accommodate wheel chairs. Walking sticks and walking frames were regarded as potential weapons, so “falls are a regular occurrence”.5 Similarly, a United Kingdom report on older prisoners found that “older prisoners frequently have significant health needs that prisons struggle with. As well as increasing numbers of prisoners requiring palliative care, there are several hundred older prisoners suffering dementia.” The report lists “the multitude of extra ways that older prisoners suffer during their incarceration, ranging from being unable to wash or leave their cells, to receiving substandard medical treatment inside the prison and being shackled in hospitals when dying.”6
The ethical issues that arise around medical treatment are no different for prisoners, although the dynamics of a prison environment can create additional challenges. Susan Baidawi, a research fellow at Monash University in Australia and author of various reports and research articles on Australia’s ageing prison population speaks of a need for a fundamental shift on numerous issues, including pain management which is contentious because of high rates of substance abuse among prisoners. Baidawi also points out that there are inherent challenges in offering the community-based model of palliative care, based as it is on principles of dignity, choice, autonomy and collaborative decision making, in a prison system that is structured around, and dominated by, the maintenance of high levels of security.7
In New Zealand, the challenges of caring for prisoners with a life-limiting illness have come to the fore in recent months as a result of the widely publicised case of Vicki Letele, a 35 year old mother of three dying of cancer who was eight months into a sentence of three years and two months for fraud. The Parole Board initially turned down her request to spend her remaining time with her family, deeming that she did not meet the exceptional circumstances test for early release.8 They subsequently reviewed their position and Letele, who has since died, was finally released on compassionate grounds. In Letele’s own words: “I think things need to be re-looked at when you're given a time frame on your life … [My prison sentence is] not a life sentence."9
Experienced Rimutaka Prison chaplain Richard Clement comments that “prisoners don’t want to have on their death certificate that they’ve died in prison – nobody wants to die in prison.” However, increasingly, there is an acceptance that this is going to be the reality for greater numbers. “While the parole board can make a recommendation to move patients into a hospice care setting, there are increasingly occasions where, because of the type and seriousness of offending, and a penal policy reflecting public expectations of harsher and harder sentences, men will not be released,” says Clement. “The fact that there can be a backlash from some members of the community means it’s not an easy decision to release certain prisoners.”
In New Zealand, most older and disabled male prisoners are managed in mainstream prison units, but, in 2012, in an attempt to respond to the changing needs of the ageing prison population, a High Dependency Unit (HDU) was opened at Rimutaka Prison to house male prisoners with health issues that make it difficult for them to function independently but who are not eligible for release. Most residents in this unit are in their seventies or eighties.10 Then, at the end of 2015, this unit was expanded with an additional 10-bed wing bringing the number of prisoners able to be accommodated up to 30.
Clement describes the HDU: “It is set amongst trees and has no actual bars on the windows, making it less prison-like and the best option short of a hospice. It is not like the rest of prison, although it is still very evident that it is a prison – the lights go off at certain times, the doors are locked and so on – but within the restrictions of that framework the Department of Corrections have nevertheless managed to create quite a caring, sensitive environment. I give the department full credit for that,” he says. Prisoner-patients have single-person rooms which look more like hospital rooms than prison cells.11
In the HDU, critical medical decisions, such as not resuscitating a patient who is dying, are normally made in consultation with the patient and their family. This simply reflects good medical practice. However, what concerns Clement greatly is what happens when a prisoner’s family is not there to advocate for him? In such situations chaplains may take on that role. “I was once appointed as a welfare guardian for a prisoner who was elderly and had advanced dementia and whose file had been stamped ‘DNR’. I questioned this, and asked that the health professionals speak to me, just as they would have to the prisoner if he had not been incapacitated.” It is his strongly held view that significant decisions relating to ‘life and death’ about a prisoner-patient should be in the hands of an independent third party. “How do you otherwise ensure that the decision is not being driven by cost saving factors?” he asks. “The local palliative care service could perhaps be that third party.”
When a prisoner in the Rimutaka HDU requires community-based hospice services, hospice staff come in and consult with the prison staff, and arrange access to special beds and equipment as needed. There is a dedicated registered nurse at the unit as well as healthcare assistants providing 24 hour care. Clement is “impressed with the Department of Correction’s decision to take on health care assistants at the HDU – there are usually four or five health care assistants and they look after the patients in the unit very well; they make cups of tea, they talk to them as well as assisting them with the everyday activities they need help with such as showering, toileting and eating.” A GP on contract visits one day a week and is on call across the site. In addition the HDU team work closely with the local district health board with the aim of providing the same levels of healthcare available to the general public.
Richard and other chaplains are often called upon after a prisoner has died. When a death is unexpected, the chaplain enters and blesses or ‘cleanses’ the room. This is an expectation of staff and prisoners, and is culturally important for Māori and Pacific in particular. In circumstances where the cell is being treated as a potential ‘crime scene’, he will stand outside the cell and pray. “The cell windows are covered and the wing which is usually raucously noisy is deathly silent. As soon as I am able, I go to the body. After that I will walk around the wing praying; I can hear voices saying ‘thank you, padre’. I bless the wing with holy water. Often staff will follow me as I walk around. When a death happens, I meet nothing but respect and quietness.”
The chaplain’s role is also to be there for prison staff. Staff will ‘de-brief’ in prison especially for deaths where there is associated trauma, such as with suicide. “There is a very respectful relationship between staff and prisoners when a person dies in prison, regardless of what the prisoner may have done,” says Clement. “Death in a prison has far-reaching impact – the ripples go out and out. Prisoners generally start to question life and death; some may blame the suicide victim for not having had the courage or strength to carry on; some are just gobsmacked; others are saddened and go through grief. For some prisoners it leads to an opening-up of unresolved grief from long ago for all sorts of things.”
Unsurprisingly, the issues prisoners face when they are dying are the same as for other people. “Dying is a time for reconciliation, for ‘putting to rights’. As a chaplain I encounter regrets all the time – men questioning the purpose and meaning of their life - ‘How did I end up here?’ Typically, the men in the unit have a life view that differs from younger prisoners, including a greater interest in faith-related matters. They will talk about the past a lot and quite often they reflect on their childhood. Those that have had some trauma will try to deal with the bad memories and will share that … some have a lot of regrets. But, when they are at that contemplative stage of life they also reflect on the things in their life that are not so bad.”
The chaplain tries to stay with a dying prisoner if possible, but will only become involved if the person wants spiritual care. Chaplains support prisoners of all faiths and none. “In some cases, sadly, prisoners have no family support,” reflects Clement. “Sometimes families disavow a prisoner because of the nature of the offending, so these prisoners are without family when they die. These prisoners will sometimes ask me about what will happen to their bodies after they die - who will arrange for their burial and attend their funeral? Sometimes the chaplain will take care of it, applying for funeral grants from Work and Income, negotiating with funeral directors, and delivering the ashes to family. The family may have become isolated from the person. They might also want to avoid a funeral bill.” Clement has personally taken on the role of organising a funeral a number of times, once spending two days walking in the Akatarawa ranges in search of a final resting place for an inmate.
The conversation with Richard concludes with a question about what has touched him the most over the years in his work with prisoners who are dying. He replies that, unfailingly he is “moved by the compassionate care and reverence staff and other prisoner-patients show to men who are nearing the end of their lives; a care that looks beyond a person’s past and that reflects the innate dignity that belongs to each and every person no matter what they may have done; a care that sees and treats everyone as a fellow human traveller deserving of love, a care that brings out the best in all of us.”
Richard Clement, of Te Atiawa and European descent, is a Baptist Prison Chaplain for the Prison Chaplaincy Service of Aotearoa New Zealand. He has served as a chaplain for 18 years, first at Wellington Prison and later at Rimutaka Prison. He was formerly a Senior Inspector of Prisons with the Department of Justice, which later became the Department of Corrections. Prison Chaplaincy Services Aotearoa New Zealand is contracted by the Department of Corrections to provide spiritual and faith services for all prisoners.
2. See http://www.stuff.co.nz/national/crime/9738841/Older-inmate-numbers-rise and Minister of Corrections, https://www.nzdoctor.co.nz/un-doctored/2015/october-2015/22/New-health-facilities-for-ageing-prisoners.aspx
6. Newcomen, Nigel, ‘Thematic Review: Older Prisoners’ reported in: https://www.theguardian.com/society/2017/jun/20/prisons-taking-role-of-care-homes-and-hospices-as-older-population-soars
11. See State Services Commission, http://www.ssc.govt.nz/hdu-bp70 2004 2014s-case-study-oct13
A Strategy to Prevent Suicide in New Zealand (2017): A Draft for Consultation.
A Submission to the Ministry of Health by Staff of The Nathaniel Centre
In April 2017, the Ministry of Health issued a draft “Strategy to Prevent Suicide in New Zealand” for public consultation setting out a framework for “how we can work together to reduce suicidal behaviour”. The following article is a summary of the submission made by staff of The Nathaniel Centre. The full submission is available on our website: http://nathaniel.org.nz/submissions/429-a-strategy-to-prevent-suicide-in-new-zealand-2017-a-draft-for-consultation
We note and endorse the ambition of the Strategy that ‘everyone is able to have a healthy future and see their life as worth living’. Promoting the concept that every life is worth living is critical, we believe, in addressing the high suicide rates in New Zealand.
A cornerstone of Catholic teaching is the belief that every human life has “intrinsic value” and is to be protected and nurtured at every stage of its development. Those who do not conform to the increasingly dominant ableist idea of what a successful life looks like (e.g. those who suffer deprivation, disability, mental illness, or the limitations of ageing), are particularly vulnerable to the suggestion that their lives are not worth living. There is an urgent need to counter the increasingly accepted and relationally impoverished societal narrative which equates the value of a person’s life with their subjective perceptions about the quality of their life, all too often based on factors that reflect an ableist or functionalist worldview.
1. We note that the Strategy provides little specific or material direction for how suicide rates might be reduced, that organisations or agencies are not identified as taking a lead, and that the ‘Activities’ are very general. The pathways and actions laid out in the Strategy can be interpreted to cover almost all possible interventions.
2. We are concerned at the way that ‘Maori’, ‘Pacific’, ‘Maori communities’ and ‘whanau, hapu and iwi’ are tasked with many Activities while no agencies have been tasked with funding or providing resources to these groups and individuals. While it is essential that Maori and Pasifika are involved in the development of suicide prevention initiatives for their own communities, it appears from the Strategy that they are expected to already know what is needed to prevent suicide while being left to take full responsibility to undertake the various Activities suggested.
Suicides Amongst our Elders
3. We understand the focus on young people given their higher rates of suicidal behaviour but we suggest that there needs to be a complementary focus on older age groups as well, particularly for those over 75 years of age. For males over 85 years the suicide rate is the highest for any age group. Evidence of increasing loneliness amongst elders and of increasing elder abuse in New Zealand suggests that rates could worsen.
4. The Mental Health Foundation of New Zealand notes that “The risk of suicide in people with depression is significant”1 and there is evidence that some groups of the elderly suffer high rates of depression. One study found depression was reported for 22 percent of Maori men (age 80-90 years) and 23 percent of non-M?ori men (age 85 years), and 30 percent of M?ori women (age 80-90 years) and 26 percent of non-Maori women (age 85 years).2
5. The 2015 Office for Senior Citizens (Ministry of Social Development) report on Elder Abuse reports that “around one in ten older people … report some form of abuse (closely linked to vulnerability and coercion)”. Most research estimates that between 2 to 5 percent of the older population may be victims of elder abuse.3 Age Concern in New Zealand reports that it receives more than 1,500 confirmed referrals each year of older people facing abuse or neglect.4 It is estimated that only 16 percent of the actual number of abuse incidents reach service agencies.5 Any strategy to prevent suicides amongst our elders must be closely linked to the prevention of abuse experienced by this group.
6. Research has established that those making serious suicide attempts are likely to be characterised by high rates of social isolation, feelings of loneliness, poor social support and lack of a close, confiding relationship.6 Loneliness is a significant problem for elders in New Zealand: in one study 9 percent of Auckland residents aged over 50 were severely lonely, and 44.5 percent moderately lonely;7 another study of older people found more than half of the sample was lonely to some extent, with 44 percent being moderately lonely and 8 percent severely lonely;8 the New Zealand Longitudinal Study of Aging described less than half of participants as ‘not lonely’, 41.2 percent as ‘moderately lonely’, 7 percent as ‘severely lonely’ and 3 percent as ‘very severely lonely’.9
7. While there are many precipitating factors involved in elder suicide, we believe that much more attention needs to be given to critiquing the ageist and ableist societal narrative that is increasingly inclined to equate value of life and personal dignity with health and independence (‘not being a burden’).
8. A focus on the suicide of elders, while ‘targeting’ a particular group and raising awareness of the ‘value’ and dignity of this group, may also work at a universal level by challenging societal attitudes about ‘useful’ or ‘successful’ lives that will assist in suicide prevention for all age groups.
Suicides within Corrections Facilities
9. There is no mention of prisoners in the Strategy, yet the suicide rate for prisoners is higher than that of the general population. In addition, the much higher suicide rate amongst M?ori men is significant since around 90% of offenders in prison are male and just over half identify as Maori.10
10. The Department of Corrections reports an increase in ‘self-harm threat to life incidents’, from six in 2011/2012 to 26 for the year 2015/2016. (‘Unnatural deaths’, with suicide being the most common cause of these, increased from five to 11 over the same period).11
11. Given these figures, and given the high rates of mental health or substance use disorder amongst prisoners,a we would like to see more emphasis in the Strategy on suicide prevention for the prison population.
Disabled People and Suicide
12. It has been found that disability status is a strong predictor of suicide ideation risk.12 Disabled people are among the most disadvantaged in terms of employment, interpersonal acceptance, economic stability, freedom of mobility and community access, all variables thought to have a significant bearing on suicide potential.13
13. It is disappointing and concerning that disabled people are not mentioned at all in the Strategy.
14. The Ministry of Health Report on suicide for 2013 found that rates of suicide increased consistently with the level of deprivation. The highest rate was among those residing in quintile 5 areas (the most deprived areas), and the lowest suicide rate was seen among those who resided in the least deprived areas. For both males and females, the suicide rate was twice as high amongst those residing in the most deprived areas compared with those living in the least deprived areas.14
15. The association between deprivation level and suicide is most apparent in the youth population where there were at least four times the number of suicides for this population in deprivation quintiles 3–5 compared with quintiles 1 and 2.15
16. The association of deprivation with suicide is not addressed in the Strategy but we suggest this is a potentially a risk factor for suicide, particularly amongst young people.
State of Mental Health Services in New Zealand
17. Growing pressures on mental health services over recent years in New Zealand mean we have not been able to meet increased need. We consider that the Strategy should advocate for increased provision of mental health support at both primary and secondary health care levels.
18. The Ministry of Health’s Director of Mental Health reported16 specialist mental health and addiction services are experiencing increasing pressure, and that the numbers engaging with specialist services have significantly increased over recent years. The Auditor-General has recently found that discharge planning is ‘impaired by pressures on inpatient and community services and other factors’.17
19. We note that those who suffer from mental illness would be particularly susceptible to a premature death under the proposed End of Life Choices Bill being sponsored by David Seymour in which a person is eligible for assisted dying if they suffer from ‘a grievous and irremediable medical condition’, which can include mental illness.
Links between suicide in the general population and legalised euthanasia and assisted suicide
20. There is a potential additional risk of an increase in suicide rates in response to moves to legalise assisted suicide/euthanasia, which needs to be considered and addressed. There is sufficient evidence to suggest that these issues may well be directly linked to the wider issue of suicide in society.
21. Legalising assisted suicide is a risk for our elders in a context in which older people are experiencing greater rates of social isolation and depression, as noted above. Many such ‘legal’ requests could potentially hide what would otherwise have been regarded as tragic suicides linked to a reactive depression that is directly related to abuse or neglect or to the limitations of ageing – a depression that can and should be treated.18
22. The relative risk of suicide following exposure to another’s suicide is two to four times higher among 15-19 year olds than among other age groups.19 Exposure to the suicidal behaviour of family members has been well-established as a risk factor for youth suicidal behaviour.20
23. While it is still premature to make definitive comparisons of suicide rates in jurisdictions that have or have not legalised euthanasia, it is worth noting that in the Netherlands the number of completed suicides (excluding premature death by euthanasia) has risen from 1,500 in 2003 to 1,871 in 2015, that is from 9.6 to 11.1 per 100,000 population (euthanasia was legalised there in 2002).21
24. If assisted suicide/euthanasia were to be legalised, young people and others at risk of suicide would be faced with two competing paradigms - ‘acceptable suicide’ and ‘unacceptable suicide’. The concept of ‘acceptable’ suicide, for those who find their lives intolerable and not worthwhile, will be in direct conflict with the fundamental goal and message of suicide prevention programmes.
25. In view of recent attempts to change the law regarding assisted suicide/euthanasia, the Strategy needs to address and challenge this potential development, which would impact significantly on the approach and messages of suicide prevention initiatives.
While the “Strategy to Prevent Suicide in New Zealand” is wonderfully aspirational, we believe it needs to be more specific in articulating interventions and in identifying, and advocating for, the resources and support required to ensure that the expressed aspirations lead to effective action.
We agree with the need to focus on the groups identified - Maori, mental health service users, Pacific peoples, and young people – but believe that the Strategy has failed to identify other demographic groups at risk of suicide, that is, elders, persons being detained in correctional facilities and disabled people, as well as those living in the most highly deprived areas. We consider these groups should also be included for targeted activities.
We suggest that those who do not conform to the increasingly dominant ableist and ageist idea of what a successful life looks like, for example, those who suffer deprivation, disability, mental illness, or the limitations of ageing, are particularly vulnerable to the suggestion that their lives are not worth living. We suggest that a strategy to prevent suicide might address this underlying social narrative.
Finally, we suggest competing paradigms would be created were New Zealand to legalise euthanasia or assisted suicide, which would effectively acknowledge the notion of ‘rational suicide’. Such a move would impact negatively on suicide prevention in the general population.
[a] A 2015 study found ‘62% of prisoners had experienced a mental health or substance use disorder, while 20% had experienced both in the 12 months before the study’. Department of Corrections. Department of Corrections 2015/2016 Annual Report. Wellington
 Teh, Ruth, et al. (2014)."Self-rated health, health-related behaviours and medical conditions of Maori and non-Maori in advanced age: LiLACS NZ." The New Zealand Medical Journal (Online) 127.1397.
 Glasgow, K., and Janet Fanslow. (2007). "Family violence intervention guidelines: Elder abuse and neglect." Wellington: Ministry of Health.
 Beautrais, A. L., et al. (2005). "Suicide Prevention: A review of evidence of risk and protective factors, and points of effective intervention." Wellington: Ministry of Health.
 Waldegrave, Charles, King, Peter, & Rowe, Elizabeth. “Aucklanders 50 and over: a health, social and demographic summary analysis of the life experiences of older Aucklanders.” (Report prepared for the Auckland Council, Research, Investigations and Monitoring Unit). Wellington: Family Centre Social Policy Research Unit and Elizabeth Rowe of Elizabeth Rowe Consulting.
 La Grow, Steven, et al. (2012) "Loneliness and self?reported health among older persons in New Zealand." Australasian journal on ageing 31.2, pp. 121-123.
 Noone, Jack, & Stephens, Christine. (2014). “The New Zealand Longitudinal Study of Ageing: Summary Report - social integration, health and quality of life”. (The New Zealand Longitudinal Study of Ageing (NZLSA)). Palmerston North: Massey University.
 Department of Corrections. Department of Corrections 2015/2016 Annual Report. Wellington.
 ibid n.d., p. 63.
 Russell, D., Turner, R. J., & Joiner, T. E. (2009). Physical Disability and Suicidal Ideation: A Community?Based Study of Risk/Protective Factors for Suicidal Thoughts. Suicide and Life-Threatening Behavior, 39(4), 440–451.
 Gill, C. J. (1992). Suicide intervention for people with disabilities: a lesson in inequality. Issues L. & Med., 8, 37
 Ministry of Health. (2016b). Suicide Facts: Deaths and intentional self-harm hospitalisations: 2013. Wellington: Ministry of Health. P.19.
 Ministry of Health. (2016b). Suicide Facts: Deaths and intentional self-harm hospitalisations: 2013. Wellington: Ministry of Health. P.20.
 Ministry of Health. (2016a). Office of the Director of Mental Health Annual Report 2015. Wellington: Ministry of Health.
 Office of the Auditor-General. (2017). Mental Health: Effectiveness of the planning to discharge people from hospital. Report by the Office of the Auditor-General. Retrieved from http://www.oag.govt.nz/2017/mental-health/docs/mental-health.pdf. pp. 3–4.
 O’Connell, H., Chin, A.-V., Cunningham, C., & Lawlor, B. A. (2004). Recent developments: suicide in older people. BMJ: British Medical Journal, 329(7471), 895.
 Haw, C., Hawton, K., Niedzwiedz, C., & Platt, S. (2013). Suicide Clusters: A Review of Risk Factors and Mechanisms. Suicide and Life-Threatening Behavior, 43(1), 97–108. https://doi.org/10.1111/j.1943-278X.2012.00130.x
 Crepeau-Hobson, M. F., & Leech, N. L. (2014). The Impact of Exposure to Peer Suicidal Self-Directed Violence on Youth Suicidal Behavior: A Critical Review of the Literature. Suicide and Life-Threatening Behavior, 44(1), 58–77. https://doi.org/10.1111/sltb.12055
Euthanasia, Assisted suicide and the Medical Profession: ‘Keep Doctors Out of It’.
Doctors are not necessary for the regulation or practice of euthanasia and assisted suicide
Many doctors want no part in euthanasia or assisted suicide, including some who, on a personal level, are not opposed in principle. As stated in “An Open Letter to New Zealanders” signed to date by more than 300 doctors, “Doctors are not necessary in the regulation or practice of assisted suicide.”1
There is evidence that the key reason proponents of a law change insist on the ongoing and unquestioned association between euthanasia/assisted suicide and the medical profession is a political one – a means of providing a cloak of medical legitimacy while promoting the idea that euthanasia and assisted suicide are a form of ‘medical treatment’.
Euthanasia proponents such as Rob Jonquiere from the Netherlands openly admit that campaigners in The Netherlands originally wanted to argue for euthanasia on the grounds of ‘self-determination’ (that is, on the basis of unfettered personal choice and without needing to fulfil any particular conditions such as being terminally ill). However, it was deemed necessary at the time for doctors to be involved in order to gain public acceptance. To quote Jonquiere who has visited New Zealand: “Politicians recognized immediately the importance that only a medical perspective would make legalization of assisted dying possible.” 2
Patients look to their doctors, not just for treatment, but also in many cases (and especially where they are seriously-ill) for guidance. How a doctor responds to a request for ‘something to end it all’ has a significant impact on a patient’s outlook. Palliative doctors and nurses report that patients ask for 'help to end it all', not because they are serious about dying, but to show they are up against it and to seek reassurance. If euthanasia or assisted suicide were available, and a doctor responded positively to a request for 'assisted dying', he or she risks sending the message, however unintended, that the patient's condition and outlook are every bit as bad as the patient fears and that death is the best option. As stated by one doctor:
In my practice, more than two dozen patients have discussed assisted suicide with me. Most did not have a terminal diagnosis. One inquiry came from a patient with a progressive form of multiple sclerosis. He was in a wheelchair yet lived an active life as a general contractor. I asked him how the disease affected his life. He acknowledged that MS was a major challenge and told me that if he got too much worse, he might want to "just end it." I told him I could understand his fear and frustration and even his belief that assisted suicide might be a good option. I also told him that should he become sicker or weaker, I would work to provide him the best care and support available. No matter how debilitated he might become, his life was, and would always be, inherently valuable. As such, I said that would I not recommend nor would I participate in his suicide. He simply replied: "Thank you."
The way that physicians respond to patients' requests for lethal drugs has a profound effect on their choices and their view of themselves and their inherent worth. Such patients deserve doctors who will support them through their illnesses, not offer them a quick exit. 3
The changing set-up of GP medical practices in various countries such as the United Kingdom and New Zealand also makes it much less likely that, in the future, patients will have a single doctor that they see regularly. This is likely to have implications for doctors’ deeper knowledge of their patients. As Living and Dying Well state: “In these days of the multi-partner GP practice and fewer home visits, many doctors know little of their patients' lives beyond the consulting room or the hospital ward.” In the UK this has resulted in doctors expressing concern “about their ability to make judgements which go way beyond the medical field – judgements about, for example, how well-considered, settled and voluntary is a request for PAS.” 4 This is precisely what doctors would be asked to do in any future physician-assisted euthanasia or physician-assisted suicide regime.
Euthanasia and assisted suicide contravene medical ethics
Professional medical groups, such as the New Zealand Medical Association (NZMA) and world Medical Association (WMA), abide by long-established ethical codes to guide their members, codes that draw on principles developed over many centuries of reflecting on what is good for the profession and good for society (patients). In both the Western and Eastern traditions of medicine one of the most important principles is embodied in the maxim that doctors should first do no harm to their patients. This has long been understood, in ethics and in practice, as establishing a ‘clear line’ that doctors will never cross to intentionally end the lives of their patients. The WMA 5 and NZMA 6 position statements that euthanasia and assisted suicide would remain unethical even if they became lawful reflects the view of the majority of those in the medical profession that maintaining the integrity of their profession requires that they not compromise the ‘first do no harm’ principle, upon which the trust of the public resides, by becoming involved in either euthanasia or assisted suicide.
Other key medical professional groups within New Zealand have similar views, including the Australia and New Zealand Society of Palliative Medicine 7 and Palliative Care Nurses New Zealand 8. The British Geriatrics Society position on Physician Assisted Suicide (2015) also speaks directly to the impact assisted suicide will have on medicine when it states that “crossing the boundary between acknowledging that death is inevitable and taking active steps to assist the patient to die changes fundamentally the role of the physician, changes the doctor-patient relationship and changes the role of medicine in society … [and] will lead to a change in attitude to death in society and also within the medical profession.” 9 In the UK the Royal College of Physicians has stated that a doctor’s duty of care for patients “does not include being in any way part of their suicide”, and this sentiment is shared by the BMA, the Royal College of Surgeons of England, the Royal College of General Practitioners and the Association for Palliative Medicine. Moreover, an opinion survey of 1,000 UK GPs in 2015 revealed that only one in seven of them would be prepared to consider a request for PAS. 10
It is hard to imagine that so many medical groups would take such a hard-line stance towards the involvement of the medical profession in euthanasia and assisted suicide if they believed that it would be in the best interests of the doctor-patient relationship or if they thought it would impact positively (or even neutrally) on the high-trust relationship that currently exists between society and the medical professions. The European Association for Palliative Care, which includes amongst its members countries where euthanasia and assisted suicide are allowed, stated: “if the ending of life becomes another option [for physicians], this might jeopardise the relationship between patient and physician.” 11
Physician assisted suicide or euthanasia act in opposition to the physician’s role as ‘healer’ which may not involve ‘cure’ but the support of a patient’s journey towards “integrity and wholeness.” 12 Bourdreau and Somerville also note that “most physicians accept the healer role as a fundamental and enduring characteristic of the profession” and that this role is incompatible with “serving as a collaborator in requested death.” 13 Randall and Downie see it as a matter of getting the fundamental question right:
It is … essential that the correct question is posed. It should be whether AS/VE, as part of the justice system and involving a legal procedure including safeguards, should be legalised. The question should not be whether ‘physician-assisted suicide’ or ‘euthanasia by doctors’ should be legalised, since it is simply irrational to consider AS/VE as ‘treatments’ or ‘healthcare interventions’. Instead, AS/VE must be debated in a context where they are explicitly excluded from the healthcare domain. 14
Impact of euthanasia and assisted suicide on medical practitioners and their integrity
In addition to the effects on the profession, and on the physician’s role as healer, there is the potential negative impact of taking part in physician assisted suicide or euthanasia on individual doctor’s well-being. One report found:
Physician participation in assisted suicide or euthanasia can have a profound harmful effect on the involved physicians. Doctors must take responsibility for causing the patient's death. There is a huge burden on conscience, tangled emotions and a large psychological toll on the participating physicians. Many physicians describe feelings of isolation. Published evidence indicates that some patients and others are pressuring and intimidating doctors to assist in suicides. Some doctors feel they have no choice but to be involved in assisted suicides. Oregon physicians are decreasingly present at the time of the assisted suicide. 15
The fact that in places where assisted suicide is available, such as Oregon and Washington State, “less than 1 percent of licensed physicians write prescriptions for physician-assisted suicide per year” 16 further emphasises the view that doctors by and large reject the idea that ending the lives of their patients is congruent with their profession or in the best interests of their patients.
Insofar as physicians enjoy societal trust, it is because since Hippocrates, physicians have maintained solidarity with those who are sick and disabled, seeking only to heal and refusing to use their skills and powers to do harm. That is why Doctors Without Borders treats injured Taliban soldiers. It is why physicians have refused to participate in capital punishment, or to be active combatants, or to cooperate with torture. It is why physicians have refused to help patients commit suicide. Many patients with terminal illness fear unbearable pain or other symptoms. The physicians’ role is to care for them in their illness so as to relieve pain or otherwise help them bear up under the symptoms they endure. Many patients loath the prospect of abject debility. The physician’s role is to maintain solidarity with those whose health is diminished, not to imply that debility renders a patient’s life not worth living. 17
It is well-established that, in countries where euthanasia is legally available, compliance remains a critical issue with significant numbers of doctors failing to report cases of euthanasia, and considerable numbers of people being euthanised by doctors and nurses without having provided explicit consent. In both Belgium 18 and the Netherlands 19,20 there is robust evidence that euthanasia in these countries is regularly carried out without an explicit patient request, even though that is required by law. Various studies have also established that large numbers of cases of euthanasia in Belgium and the Netherlands are not reported, as is required by law in both countries. One study in Belgium found that only half of all estimated cases of euthanasia were reported to the Federal Control and Evaluation Committee. 21 In the Netherlands it was found that about 20% of cases of euthanasia were not reported, as is required under the Euthanasia Act. 22
The fact that ineligible patients are receiving lethal prescriptions, and that reporting of cases is deficient, implicates the medical profession in a way that is only negative and which is certain to impact negatively on the high levels of trust that the public currently place in the institution of medicine and in the medical profession considered as a whole.
All of the above evidence points to the fact that there are very real risks posed by the introduction of physician-assisted euthanasia and physician-assisted suicide for the integrity of the medical profession and the quality of the relationship between doctors and patients.
There is also evidence from around the world which shows that certain groups, including some of the most vulnerable people in society, already have good reasons (based on their lived reality) to mistrust the medical profession without the added risks that would be posed by a euthanasia or assisted suicide regime. 60 percent of respondents in an NOP omnibus survey, carried out in 2004 for the UK Voluntary Euthanasia Society, felt that elderly people might be more nervous of going into hospital if euthanasia were to be legalised. 23
A recent article by Jennifer Cohen in Voices in Bioethics describes a history of unethical research on African Americans and refers to a 2006 study which found that African Americans had higher levels of distrust in physicians because of their knowledge of historical unethical experimental treatment of African Americans. 24 More specifically, it is widely known that the introduction of euthanasia in the Northern Territory in 1995 created a negative backlash amongst many of the Aboriginal people, most of all the Aboriginal Health Workers themselves who were concerned “that their position within their own communities might be irreparably damaged by the existence of the legislation.” 25
Medically assisted euthanasia and assisted suicide dangerous in an ableist society
Speaking from his own personal experience, New Zealander Dr John Fox reflects insightfully on the impact of co-opting the medical profession in the practice of euthanasia or assisted suicide:
It’s that trust, that moment of connectedness and care, I rely on as a disabled person. And it’s that trust assisted dying attacks. It tears the trust between medical professionals and their patients that doctors will cure, not kill. It brings the spectre of killing as an option to every death bed, to every overworked administrator, to every hospital looking for budget cuts. 26
Similarly, Baroness Jane Campbell (a disability and human rights activist who has spinal muscular dystrophy) told fellow peers in the UK to
… imagine that it is already law and that I ask for assistance to die. Do your Lordships think that I would be refused? No; you can be sure that there would be doctors and lawyers willing to support my right to die. Sadly, many would put their energies into that rather than improving my situation or helping me to change my mind. The Bill offers no comfort to me. It frightens me because, in periods of greatest difficulty, I know that I might be tempted to use it. It only adds to the burdens and challenges which life holds for me. 27
Carol Cleigh Sutton succinctly summarises the impact of legalising euthanasia or assisted suicide on disabled people when she writes:
The very heart of the argument for assisted suicide/euthanasia is that an individual may be better off dead than disabled. The fact that this argument can be made in respectable public forums demonstrates just how ableist this society is … ableism, like racism and sexism, is an ugly prejudice that society holds towards its minority members …This ideology, which we call Better Dead Than Disabled, permeates ableist society, but even more deeply infects the medical system, and the more society in general accepts it, the more we encounter it every time we have to deal with medicine. 28
It is naïve to think that the confidence and trust that disabled people have in the medical profession will not be further harmed by the introduction of euthanasia and assisted suicide.
The European Association for Palliative Care (2015) has stated that “the impact of characterising euthanasia as a medical treatment on physicians’ professional identity and on the institutions of medicine and law has not been evaluated yet.” 29 This means that the question is, at best, ‘wide-open’.
We have presented an argument that the practice of medically assisted euthanasia or medically-assisted suicide will pose a real risk for the medical professions themselves, will negatively shape the way in which the medical professions will come to be regarded in the future and will potentially undermine the quality of care for patients at the end of life, in particular those who are disabled.
Margaret Somerville puts it well: “Health-care professionals need a clear line that powerfully proves to them, their patients, and society that they do not inflict death; both their patients and the public need to know with absolute certainty -- and be able to trust -- that this is the case. Anything that would blur the line, damage that trust, or make them less sensitive to their primary obligations to protect life is unacceptable. Legalizing euthanasia would do all of these things.” 30
Early in the 52nd New Zealand Parliament MPs will have to consider the possibility of legalising euthanasia and/or assisted suicide in the form of David Seymour’s Bill. While we will continue to argue that any changes to the current law are unnecessary and dangerous and while this will continue to be debated and challenged by proponents, all should be able to agree that the risks and problems associated with involving doctors, combined with the fact that doctors are not necessary in the regulation or practice of assisted suicide, means that parliament must reject outright any proposed Bills that have doctors at their centre. The evidence points to this being the most coherent and ethically defensible response.
 William L. Toffler. “A Doctor-Assisted Disaster for Medicine”. Wall Street Journal (online)Aug 17, 2015.
 Board Members of the EAPC., "Euthanasia and Physician-Assisted Suicide: A White Paper from the European Association for Palliative Care." Palliative Medicine (2015).
 Boudreau, J. Donald, and Margaret A. Somerville. "Euthanasia is not medical treatment." British medical bulletin 106.1 (2013).
 Randall, Fiona, and Robin Downie. "Assisted suicide and voluntary euthanasia: role contradictions for physicians." Clinical Medicine 10.4 (2010): 323-325.
 Stevens, Kenneth R. "Emotional and psychological effects of physician-assisted suicide and euthanasia on participating physicians." The Linacre Quarterly 73.3 (2006): 203-216.
 Emanuel, E J., B. Onwuteaka-Philipsen, J W. Urwin, and J. Cohen. "Attitudes and Practices of Euthanasia and Physician-Assisted Suicide in the United States, Canada and Europe." JAMA 316, no. 1 (2016): 79-90.
 Yang, Y. Tony, and Farr A. Curlin. "Why physicians should oppose assisted suicide." Jama 315.3 (2016): 247-248.
 Chambaere, Kenneth, et al. "Physician-assisted deaths under the euthanasia law in Belgium: a population-based survey." Canadian Medical Association Journal 182.9 (2010): 895-901. Of 208 deaths reported, 66 were without an explicit request. In 77.9% of these cases, the decision was not discussed with the patient.
 Onwuteaka-Philipsen, B.D. et al. “Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey.” The Lancet, 2012; 380: 908-15. In 2010, of 475 deaths as a result of euthanasia, 13 (2.7%) were without an explicit patient request.
 Van der Maas, Paul J., et al. "Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990–1995." New England Journal of Medicine 335.22 (1996): 1699-1705. In 1995, 0.7% of deaths involved ending the patient’s life without the patient’s explicit, concurrent request.
 Van der Maas, Paul J., et al. "Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990–1995." New England Journal of Medicine 335.22 (1996): 1699-1705. In 1995, 0.7% of deaths involved ending the patient’s life without the patient’s explicit, concurrent request.
 Van der Heide, Agnes, et al. "End-of-life practices in the Netherlands under the Euthanasia Act." New England Journal of Medicine 356.19 (2007): 1957-1965.
 Jacobs, Elizabeth A., et al. "Understanding African Americans' views of the trustworthiness of physicians." Journal of general internal medicine 21.6 (2006): 642-647
 Report to Aboriginal Reference Group: Rights of the Terminally ill Act Education Program, at 1 (July 23, 1996).
 Radbruch, Lukas, et al. "Euthanasia and physician-assisted suicide: a white paper from the European Association for Palliative Care." Palliative medicine30.2 (2016): 104-116.
Editorial - All suicides matter – connecting the dots
In early August the Health Select Committee Report into Assisted Suicide and Euthanasia was presented to Parliament. The Report is timely given that David Seymour’s End of Life Choice Bill was drawn from the Private Members ballot in May. It also comes hot on the heels of the Ministry of Health’s consultation on a revised “Strategy to Prevent Suicide in New Zealand.”
Most of us will have been touched at some time by the suicide of a young person and, to quote the Director of Mental Health, Dr John Crawshaw, know only too well the “devastating ripple effect across communities.” These suicides are a tragedy and we rightly do all we can to prevent them. I know of no-one who disagrees with this approach.
Contrast that with events surrounding the ongoing court case of Suzy Austen, a woman who allegedly helped a 77 year old woman to prematurely end her life in June 2016. Austen’s early court appearances have been marked by her supporters arguing for a so-called right for people to “make their own decisions when it comes to the end of their life” without interference.
The Austen court case raises a number of questions: Why do some people think that the premature death by suicide of an older woman, who according to various media accounts was not actually dying, is a defendable and even admirable action while continuing to hold that the suicide of a younger person is a reprehensible act? Whatever way one looks at it, such a stance requires holding the view that there are certain ‘lives unworthy of life’?
All moral judgements rest on assumptions about what is most valuable. These assumptions are bound up in particular individual and societal narratives (stories) that help us make sense of the world and decide what is ‘good’ and what is ‘bad’. So, as an ethicist, I ask, ‘What kind of narrative underpins the conclusion that some suicides are desirable while others are not?’ and ‘What other consequences might flow from such a narrative?’
Unless one argues there is absolutely no need for any regulations whatsoever, any euthanasia or assisted suicide regime requires a judgement from someone other than the person concerned that they qualify. This, logically, requires making a prior judgement that some lives are less worthwhile than other lives. In countries like Belgium and the Netherlands, this has led to academic debates about which lives are ‘of too mediocre quality’.
In turn, the ability to make such decisions requires some common agreement about what makes a life worth living.
In our time, more and more people are subscribing to what is referred to as a ‘functionalist’ assessment of life. By this is meant an approach that measures a person’s worth according to their ability to be successful, productive, independent and in control. It’s not a new approach. As far back as 1946, Victor Frankl wrote in his well-known book “Man’s Search for Meaning”: “… today’s society is characterized by achievement orientation, and consequently it adores people who are successful and happy and, in particular, it adores the young. It virtually ignores the value of all those who are otherwise, and in so doing blurs the decisive difference between being valuable in the sense of dignity and being valuable in the sense of usefulness.”
This functionalist narrative described by Frankl is clearly an ‘ageist’ one as well as an ‘ableist’ one because it feeds the idea that the young and productive are more deserving of life. According to that logic, the place of our elders, the disabled and other ‘non-productive’ persons in society rests on a concession – the generosity or tolerance of society – rather than any ‘right’ to life.
The debate about assisted death is, therefore, a contest between differing narratives about human worth. It’s a debate about the rules of engagement between society and those who are most vulnerable, whether because of age, disability or illness, and their ‘right to occupy’ a valued space in society without having to justify it. From a philosophical and ethical stance, it’s ultimately a debate about the sort of society we want – about the sorts of people who will feel unconditionally included and welcomed.
In other words, if we commit to going down the track of euthanasia and assisted suicide we will be committing to re-writing the societal narrative so as to create distinctions in policy and law between those deserving of life and those not deserving. For me and many others, that is too big a price to pay.
My plea is that we re-commit ourselves to speaking of and treating our elderly as ‘elders’, as ‘taonga’. This requires us to create a counter-narrative to that of functionalism and its progeny, ableism and ageism. Above all, it requires the State to eschew any involvement in making judgements about the worth of its citizens. In New Zealand there are many rich cultural perspectives we can call on to inform such a counter-narrative.
Let’s instead fight for the sort of generous, inclusive and effective care that addresses the suffering, whether existential or physiological, of all who might contemplate prematurely ending their lives, whatever their age or ability.
Dr John Kleinsman is director of The Nathaniel Centre, the New Zealand Catholic Bioethics Centre
Dignity and Dying at Much Older Ages
By Heather McLeod
I am an actuary by training and my professional work is in health economics, health policy and social security policy. Although I work with the numbers daily, even I am taken aback when I look at the projections for the number of deaths and the age at which deaths will occur in years to come. There are huge implications for our society and our ability to provide compassionate and dignified care at the end of life.
There are two main forces at work: the first is the large increase in the total numbers of deaths in the future. Deaths in New Zealand are currently about 30,000 a year, while births fluctuate around 60,000 a year. Historically, births in New Zealand were at 30,000 a year after the First World War but the “Baby Boom” took us to over 60,000 births a year in the short period between 1946 and 1965. The leading edge of “boomers” are now beginning to enter the later years of their lives and so, over time, the number of deaths will catch up. Statistics NZ projects1 that deaths will increase by some 50 percent between 2016 and 2038, to a level of 45,000 a year in only 22 years. The increases will continue into the 2060s when deaths are projected to peak at over 58,000 a year, nearly a doubling from current levels.
The second force is, perhaps ironically, due to the success of our health system. People are increasingly dying at older ages and this trend is noticeable even over short periods of time. In the year 2000, deaths at age 85 and over were 26 percent of total deaths and by 2013 this had increased to more than 35 percent of total deaths2. The projections (again from Statistics NZ) are that by 2038, 56 percent of total deaths in New Zealand will be in the age group over 85 years.
The nature of deaths will also change. Palliative Care Australia3 refers to the sequential changes in cause of death, with cancer deaths peaking around age 65, deaths from chronic organ failure around age 75 and deaths from dementia and frailty for those who survive to 85 and beyond.
Researchers at the University of Bath Centre for Death & Society describe the nature of death at the oldest ages, saying4: “you will be very frail, possibly doubly incontinent, your sight, your taste, your hearing, your ability to orient yourself in time and space may all be severely compromised. You may be experiencing a lot of physical as well as emotional pain.” In New Zealand we project that the proportion needing palliative care will increase from about 80 percent in 2016 to nearly 83 percent of all deaths by 20382.
In the late Middle Ages, the “ars moriendi” ("The Art of Dying") were texts for society on how to approach death. Tony Walters, of the University of Bath5, describes how hospices developed the vision of the “ars moriendi” for the 20thand 21st centuries, saying “This movement has helped countless 50 and 60 year olds dying of cancer.” But with more deaths expected at much older ages and with deaths occurring gradually over a longer period, the challenge now is “how to add life to years when you are 90 and frail and have dementia.”
The place of death is also changing. Already, by 2013, for those over 85 years, 59 percent of women and 48 percent of men died in residential care2. If the patterns of the past continue, then with deaths occurring at much older ages it is projected that the number of deaths in residential care will increase from 10,400 a year in 2016 to 19,200 a year by 2038, an increase of nearly 85 percent. However, warnings have been issued that we are not providing enough facilities for caring for increased numbers of elderly and frail people6.
The revised national health strategy for New Zealand, released in 20167, is silent about these issues. Death barely features in that document. A key feature of the strategy is the idea that care will be provided closer to home but the burden on elderly carers of more deaths from frailty and dementia is not addressed.
The world is entering an unprecedented period with a much older population and fewer people of working age to fund the health and social care that will be needed. There are likely to be tough discussions as to how society will prioritise, pay for and organise care. In New Zealand, these discussions need to happen sooner and collectively, rather than be at the mercy of election cycles. Bioethics centres, such as The Nathaniel Centre, are well-placed to catalyse the dialogue that is much needed by society.
That’s at the macro level. But the more important issue is the impact on people. What do deaths at much older ages mean for our society? What do they mean for our communities? Most importantly, what do they mean for carers who will be increasingly elderly themselves? And do we understand what dignity means in the long, slow trajectories of dying with frailty and dementia?
I frankly don’t know the answers, but I hope that by sharing what we think is coming it will catalyse communities to take death back from the secularisation and medicalisation it has undergone in recent years. Churches potentially have a large role to play in shaping a new “ars moriendi” that is faithful to their understanding of human dignity informed by their philosophical and theological traditions
The Catholic Church of England and Wales has created a website, http://www.artofdyingwell.org/about-this-site/ that explores for today what was traditionally called the art of dying well, “ars moriendi”.
1. Statistics New Zealand. National Population Projections: 2016(base)–2068; 2016. URL: http://www.stats.govt.nz/browse_for_stats/population/estimates_and_projections/NationalPopulationProjections_HOTP2016.aspx
2. McLeod H. The Need for Palliative Care in New Zealand. Technical Report prepared for the Ministry of Health, June 2016; 2016:103. URL: http://centraltas.co.nz/assets/Health-of-Older-People/Technical-Report-Need-for-Palliative-Care-vF2-June-2016-H-McLeod.pdf
3. Palliative Care Australia. Health System Reform and Care at the End of Life: a Guidance Document. Deakin West, ACT: Palliative Care Australia; 2010:96. URL: www.palliativecare.org.au/Portals/46/Policy/Health%20system%20reform%20-%20guidance%20document%20-%20web%20version.pdf
4. Kralova J. “Living longer”, is that good news? : University of Bath, G4 Dying Well Network; 2015 URL: https://gw4dyingwell.wordpress.com/2015/07/31/living-longer-kralova/GW4
5. Walter T. The Revival of Death: two decades on – by Tony Walter: University of Glasgow, End of Life Studies; 2015 URL: http://endoflifestudies.academicblogs.co.uk/the-revival-of-death-two-decades-on-by-tony-walter/
6. Westpac Institutional Bank. Industry Insights: Healthcare & Social Support Services; 2016. URL: https://www.westpac.co.nz/assets/Business/Economic-Updates/2016/Bulletins-2016/Industry-Insights-Healthcare-and-Social-Support-Services-October-2016.pdf
7. Ministry of Health. New Zealand Health Strategy: Future direction. Wellington: Ministry of Health; 2016. URL: http://www.health.govt.nz/publication/new-zealand-health-strategy-2016
The Abbeyfield concept
As our population ages, new ways of living with respect and dignity are required. The family home might no longer be accessible or suitable, a unit might be too lonely and/or a retirement village a step too far or too expensive. One solution, available in several New Zealand towns and cities, is the international model of community-based supported flatting known as ‘Abbeyfield’, a volunteer-based organisation providing housing for older people. Founded in the mid-1950s in a poor borough of London, now more than 10,000 residents in over 16 countries live in Abbeyfield homes.
The concept has operated in New Zealand since the early 1990s when it was introduced to Nelson by a local GP who travelled to the United Kingdom to look at older peoples’ housing options. Enthused by the Abbeyfield concept, he returned home where he promoted the idea and recruited supporters and Abbeyfield New Zealand was born. The Foundation was registered in July 1999 and regions run their own Abbeyfield Society centred on their residences.
There are now 14 Abbeyfield houses in towns and cities around the country, including Whangarei, Sandringham, Takaka, Nelson, Christchurch, Westport, Queenstown and Dunedin with more in the planning and development stages. Some are the result of partnerships with local community groups such as with the RSA in Motueka. Most houses have between 8 and 10 residents who are aged from their mid-60s. Every home is purpose built and residents have their own large studio room with ensuite. As with most family homes, there is a communal lounge, dining room, kitchen and laundry and in some houses a guest room for visitors.
Each house is staffed by a live-in housekeeper who takes care of the shopping and prepares the two main meals of the day which are served at the communal dining table. But other activities, from gardening to governance and social and leisure activities, are done by volunteers who form voluntary house committees. Residents contribute as much as they can, are involved in the management of their house and in the selection of new members of their house. An Abbeyfield House aims to be ‘a typical house in a typical street’ (although usually a large one) offering companionship, independence and support in rental accommodation at a price affordable to most older people on a pension.
The aim is to enhance the quality of life for older people by enabling independence, privacy and companionship, dignity, involvement and housing security.
The philosophy centres on the older person, with the skills and time of volunteers the key to the concept and to keeping prices down. Abbeyfield houses are a home, not an institution, and provide full board and accommodation at a rate which is no more than National Superannuation. Each resident nominates a friend or relation as a personal advocate who can be contacted and consulted in case of an emergency or difficulty, by either the resident or the Society. Care services are not provided but residents can be assisted to access home care services if needed. There is housing security for as long as they can live in the relative independence of the communal flatting environment, and many residents are well into their 90s.
Values underpinning the concept include the belief that people can work together to help older citizens have a secure, comfortable and companionable life in a regular household. As well, older people have an important role to play in the lives of their families, friends and communities. For example, residents of Abbeyfield Dunedin recently staged a protest against the planned removal of their local New Zealand Post post-box, a threat which would limit their participation in the wider community.
Several projects were completed with the help of Housing New Zealand’s Innovation Fund. With the government’s enthusiasm for social housing the Abbeyfield national board has looked at how Abbeyfield might be best positioned to take advantage of that policy.
The whole concept depends on dedicated volunteers locally, nationally and internationally. JB Munro is one New Zealand volunteer who has had a significant role in the movement, following his retirement as head of the IHC. He chaired Abbeyfield New Zealand for many years and also served as the organisation’s International Chairman, overseeing Abbeyfield work in numerous countries. When he retired from that role in March 2014 his contribution was recognised at a dinner in London attended by the movement’s patron, the Prince of Wales. He had previously been awarded the Abbeyfield International Royal Patron's Award, an honour which is presented to only one volunteer per year from across the world.
There are still many regions in New Zealand without Abbeyfield Houses or without spare capacity. But each residence starts because volunteers gather and organise around an identified need. For many middle aged people the Abbeyfield concept of gently supported affordable flatting provides an appealing concept for parents and older relations. But by getting together now with a group of friends to establish a society of volunteers and develop a purpose built facility they may also be addressing their own future housing needs.
Dr Hilary Stace is a disability researcher attached to the Health Services Research Centre at Victoria University. She has a particular interest in autism, intellectual disability and human rights. She is currently working on a biography of JB Munro, formerly head of the IHC.
London without old people is just a factory floor
Harry Leslie Smith describes how living and getting around in London, one of the world’s richest cities, has become a challenge for the elderly and especially the poor elderly. The visible absence of the elderly in cities like London does not affect just the elderly, but the city itself becomes less civilised and vibrant.
Like The Nathaniel Centre, the Caroline Chisholm Centre for Health Ethics is a Catholic bioethics centre. We are based in Melbourne, the capital city of the Australian state of Victoria. Every year, the Chisholm Centre hosts a one-day conference which explores a significant issue in health and aged care. On 7 October 2015, our annual conference was on ageism or age discrimination.1 This article reports some of the key insights from that conference.2 It has three parts. The first explores age discrimination. It defines what age discrimination is, and surveys some of its various manifestations. The second part of this article overviews important Catholic teaching about ageing and age discrimination. As we will see, as well as critiquing age discrimination, Catholic teaching offers a positive vision of ageing and the contribution which older persons can and should make. Finally, the third part of this article considers briefly some of the challenges which come to us from this discussion.
I. Age Discrimination
What is age discrimination?
It is hard to say when a person should be classified as ‘old.’ The term ‘older person’ is used to describe someone who is 65 years or older – an age chosen because in recent times it has been regarded as the retirement age.3 Older persons are further divided into the young-old (65–74), the middle-old (75–84), and the old-old (85+).4
At the Chisholm Centre conference, Judy Gregurke, National Manager Aged Care Reform at COTA Australia, defined ageism or age discrimination as “the stereotyping or discrimination of a person or group of people because of their age.”5 There are positive stereotypes, but even these can be problematic. For example, elderly women should not feel pressured or compelled always to be “sweet.” That being said, in Western culture most stereotypes of older persons are overwhelmingly negative, and older persons are regarded as being dependent, frail and incompetent.6 These negative stereotypes are expressed both in negative attitudes about older persons and in negative behaviours towards them. Age discrimination predominately impacts upon those who are over 65, but it can also affect persons considerably younger than this.
Particularly when this is an ongoing experience, age discrimination can have a profoundly negative effect on older persons. They can internalise the ageist messages, and come to believe that they are indeed dependent, frail and incompetent. This self-deprecation, in turn, leads to poorer health, diminished wellbeing, and reduced mental ability.7 It can also diminish the older person’s motivation to be an active member of society. This in turn can lead to social isolation, which further diminishes the individual’s health and wellbeing.8
Research reported by the Australian Human Rights Commission in 2013 found that 71% of Australians felt that age discrimination was common in Australia. 35% of Australians aged 55 to 64, and 43% of Australians aged over 65 reported having experienced discrimination because of their age. This included being turned down for a position, being ignored, and being treated without respect. It also included service invisibility (as service people ignored them), relationship invisibility (as they were made to feel a burden in a relationship), and cultural invisibility (with people like them not being represented in popular culture).9
Denigration, exclusion, and abandonment
There is a certain dynamic to age discrimination. It begins with the denigration that flows from negative stereotyping, whereby older persons are regarded as dependent, frail and incompetent. The logic is then that we do not need to include older persons, for such incompetent people would have little or nothing to contribute. This in turn leads to their exclusion from positions of influence, including employment (see below). However, it also includes the exclusion of older persons from important social, cultural and political decision-making processes and forums at the local, regional, national and international level. It even includes their exclusion from processes and forums which make decisions about older persons.
When older persons are excluded in this way, society as a whole is disadvantaged. Older persons have a privileged position in remembering our history. They remind us where we have come from, and therefore who we are, and where we are heading. When all this is forgotten, we can lose our way as a society. Our society suffers when this happens, and all of us are disadvantaged. Older persons are particularly disadvantaged when they are excluded from the processes and forums which consider their own care.
The ultimate outcome of the dynamic of age discrimination is the abandonment of older persons, as those who are already denigrated and excluded are denied the resources that they need to live a meaningful life. While this dynamic continues in society, any talk of legalising euthanasia and assisted suicide is particularly fraught. Might those who are already denigrated, excluded and abandoned ‘choose’ euthanasia as the only way out? Indeed, might euthanasia be the ultimate form of abandonment?
It must be stressed that there is nothing inevitable about any of this. Traditional societies usually have great respect for their elders. The negative dynamic has developed in Western societies because of choices which we have made. As our societies have become more materialistic and consumerist, a utilitarian calculus has taken over. This calculus places great value almost exclusively on economic contribution, devaluing all the other ways that people contribute to society. We need to remember that this utilitarian culture has arisen because of choices which we have made, and it can therefore be reversed if we make other choices.
One place in which age discrimination occurs is the workplace. Older workers are generally experienced and productive, hard-working and reliable. However, persistent negative stereotypes lead to discrimination against them. A 2013 Australian report found that 1 in 10 business respondents had an age above which they did not recruit, with the average age being 50 years. Further, 29% of business decision-makers believed that older employees had difficulty adapting to change; 36% believed that older employees were less likely to be promoted; and 50% agreed that older employees were at higher risk of being made redundant.10
25% of Australian workers over the age of 50 report that they have experienced workplace discrimination. More than 80,000 Australians over the age of 50 are unemployed, and workplace discrimination is a significant factor in this. If only 5% more people over the age of 55 had jobs, the Australian economy would be $A48 billion better off.11
In New Zealand, a 2014 Human Rights Commission report on the Ageing Workforce found that two in five (40%) older workers had experienced age related discrimination in the past 5 years. Similar proportions (46%) of workers (of any age) have witnessed it over this time period. The discrimination is most commonly manifested in the form of withholding interesting tasks, reduced access to promotions and bullying.12
Ignoring the contributions of older persons
Older persons contribute to the community in many ways. Most of these contributions, however, do not involve financial payment or the exchange of money. For this reason, the utilitarian calculus of the dominant materialistic and consumerist culture has difficulty in both recognising and valuing these contributions. In this section, we will highlight some of these contributions. Further, to prevent these contributions being undervalued, we will assign economic value to them.
Older persons provide a lot of care. Some are primary carers, perhaps of their spouse, a disabled adult child, or sometimes their own grandchildren. Many are informal carers, caring for family and friends, and particularly providing child care to their grandchildren. The economic value of the informal aged care provided by older Australians in 2015 was about $A60.3 billion. In 2014, Australian grandparents provided child care to 837,000 children. Indeed, they provided more child care than was provided by formal or paid carers. Older persons also contribute as volunteers. Without financial reward, their contributions often draw on a lifetime of skill, experience, and wisdom.13 In 2010, 2.9 million Australians over 65 were involved in volunteer work.14 In 2006, 5.4 million Australian volunteers (including many older persons) provided services equivalent to 454,000 full-time jobs.15 Older persons also provide peer support, visiting and befriending other older persons. When so many older persons are socially isolated, this is a very significant contribution which enhances what is called social capital.16
Moving beyond these merely economic measures, we should also recognise and celebrate important features of the contribution of many older persons. Many have reached a place of genuine altruism, where they are able to give without any thought of return. As we noted above, they are also able to draw on a lifetime of experience. Further, they are the memory of society, reminding us where we have come from, and therefore who we are, and where we are heading. This is of particular importance when older persons contribute to social, cultural and political decision-making processes and forums at the local, regional, national and international level. Finally, drawing on both their lifetime of experience and their early socialisation in a kinder and wiser time, older persons often offer us a more complete vision of life.17 These are very valuable contributions indeed.
Sadly, we must recognise that older persons who can be denigrated, excluded and abandoned are sometimes also abused. Elder abuse is committed by someone with whom the older person has a relationship of trust, such as a partner, family member, friend or carer. It can be physical, social, financial, psychological, or sexual, and can include mistreatment and neglect. Its most common forms are financial abuse and psychological/emotional abuse.18 Data from the World Health Organisation estimates that 1 in 10 older persons experience some form of elder abuse every month.19
The victims of elder abuse are predominately older women, particularly those who are very dependent and socially isolated. Sadly, about 90% of perpetrators are family members.20 In the finance industry, elder financial abuse is somewhat ironically called “inheritance impatience.” It can involve significant amounts of money. For example, in the 2013–14 financial year, the Elder Abuse Prevention Unit in the Australian state of Queensland assisted 139 older people who together had lost a total of $A56.7 million.21
In New Zealand, most research estimates that 2 to 5 percent of the older population may be victims of elder abuse.22 Age Concern reports that it receives more than 2,000 confirmed referrals each year of older people facing abuse or neglect.23 If, as estimated, only 16 percent of the actual number of abuse incidents reach service agencies,24 this means that the likely number of elderly people subject to abuse is greater than 12,000. A study of respite care patients and caregivers in England found that 45% of caregivers admitted either verbal (41%) or physical abuse (14%).25
II. Catholic Teaching
This is a necessarily brief overview of some of the more important Catholic statements about age discrimination. These statements, while critiquing age discrimination, also offer a positive vision of ageing and the contribution which older persons can and should make.
The best short statement of the Church’s positive view of older persons is perhaps found in paragraph 222 of the Compendium of the Social Doctrine of the Church. It recognises the positive contribution that older persons can make in the workplace, in the family, and in all of society. It therefore calls everyone to pay “generous attention” to them, and to see them as “partners in shared projects.” It also calls us to care for the needs of older persons, particularly those who are most frail and most marginalised. It quotes Psalm 92 to present the Church’s vision and hope for all older persons: ‘They still bring forth fruit in old age.’26
Below, we will look at statements from the last three popes, along with the Church’s contribution to the UN International Year of Older Persons in 1999.27
John Paul II
On 23 March 1984, Pope John Paul II addressed 8,000 older persons who had gathered from the dioceses of Italy. He described old age as “a time of life which is humanly and spiritually fruitful.” He reminded the assembled older persons, “You still have a mission to fulfil, a contribution to make.” He stated clearly, “According to the divine plan, each individual human being lives a life of continual growth, from the beginning of existence to the moment at which the last breath is taken.”28 John Paul’s vision of old age is at once an inspiration and a challenge to older persons – and to all of us.
UN International Year of Older Persons
1999 was the United Nations International Year of Older Persons. It was officially launched on 1 October 1998, the International Day of Older Persons. On the same day, the Pontifical Council for the Laity issued The Dignity of Older People and Their Mission in the Church and the World. A year later, on 1 October 1999, Pope John Paul II issued a Letter to the Elderly. The Australian Catholic Bishops also contributed through their 1998 Social Justice Statement, which was titled The Challenge of Ageing.
The document from the Pontifical Council for the Laity is probably the most complete statement of Catholic teaching about ageing and age discrimination. It is just over 10,000 words in length. It has two chapters on the meaning and value of old age, with the first drawing on human insight, and the second drawing on the wisdom of the Bible. It has a chapter on age discrimination and the other problems that older persons can face. It has two chapters (the first general, the second more specific) on the Church and older people. Perhaps its most important sentence is the following: “The Church should heighten awareness of the needs of older persons, not least that of being able to contribute to the life of the community...”29
Pope John Paul wrote to his elderly brothers and sisters as an older person himself. An interesting feature of this letter is his analysis of the Fourth Commandment to ‘Honour your father and your mother’: “Honouring older people involves a threefold duty: welcoming them, helping them and making good use of their qualities.” He also advised young people that “older people can give you much more than you can imagine.”30
2012 was the European Year for Active Ageing and Intergenerational Solidarity. Pope Benedict contributed to this year on 12 November 2012 by visiting a home for the elderly in Rome run by the Community of Sant’Egidio. In his speech, he noted that society “dominated by the logic of efficiency and gain” often views the elderly “as non-productive or useless.” Against this, he insisted that human life even “in the years of old age... never loses its value and dignity.” Indeed, he recognised that “the wisdom of life” which older persons hold is “a great wealth,” and therefore that older persons are “a wealth for society,” “a value for society, especially for the young.” Prophetically, he stated, “The quality of a society, I mean of a civilisation, is also judged by how it treats elderly people and by the place it gives them in community life.”31
On 28 September 2014, Pope Francis met with about 40,000 older persons and their families. He recognised that “old age is a time of grace,” and that older persons, particularly grandparents, “are entrusted with a great responsibility: to transmit their life experience, their family history, the history of a community, of a people; to share wisdom with simplicity, and the faith itself.” A people who do not take care of its seniors, he warned, “has no future.... because such a people loses its memory and is torn from its roots.” Rather confrontingly, Francis described abandoning older persons in aged care facilities as “actually real and hidden euthanasia.”32
Francis returned to these issues in his General Audiences on 4 and 11 March 2015. His first speech focussed on the abandonment of older persons and age discrimination; his second presented the Church’s vision of ageing and the contribution of older persons. In his first speech, he criticised a “culture of profit” or a “throw-away culture” which views older persons as a “burden,” and which therefore throws them away. He gave an example of an older woman in an aged care facility who had not been visited by her family for 8 months. Confrontingly, he called this a sin – indeed, he called it a “mortal sin” which could imperil our eternal destiny.33
In his second speech, he insisted that “old age has a grace and a mission too, a true vocation from the Lord.” He particularly called older persons to prayer, suggesting that “prayer is the purpose of old age.” He also spoke of the “mission” or “vocation” of older persons to transmit true values particularly to the young. “How I would like,” he said, “a Church that challenges the throw-away culture with the overflowing joy of a new embrace between young and old!”34
These same themes are expressed in nn. 191–193 of Amoris Laetitia, the recent Apostolic Exhortation on the family. Paragraph 191 is about the abandonment of the elderly and age discrimination. Paragraph 192 is about the role of grandparents and older persons in transmitting both “history” and the “most important values.” Paragraph 193 warns that the “lack of historical memory” is a serious danger for any society. “Knowing and judging past events is the only way to build a meaningful future.”35
III. A Call to Action
There is something in this material to challenge each of us. If we are older, perhaps the most important challenge is to embrace this positive vision of ageing. This may require that we recognise and overcome anything within us which regards ourselves as older persons or the contribution that we make as second-rate or inferior. It may also challenge us to step forward to become involved in significant projects. It probably will ask us to ‘push back’ when we encounter age discrimination: for example, when a sales assistant serves a younger person before us, we may decide to say politely but firmly, “Excuse me. I was here first.”
If we are younger, one challenge is to ensure that older persons are represented in significant decision-making processes and forums. While this is important for every issue, it is particularly important for issues related specifically to older persons. In all cases, we may be surprised how much older persons have to contribute. Another challenge is to befriend an older person or older persons, and regularly to spend time with them. St Pope John Paul II reminds us that “older people can give you much more than you can imagine.”
Reverend Kevin McGovern was Director of the Caroline Chisholm Centre for Health Ethics for 9 years from August 2007 to July 2016. He is now a consultant at the Centre. He is also a member of Australia's health ethics peak body, the Australian Health Ethics Committee.
- For more on this conference, including reports and photos, our distinguished speakers and their PowerPoint slides, see “The Older Person Today: giving and receiving care,” Caroline Chisholm Centre for Health Ethics (CCCHE), http://chisholmhealthethics.org.au/conference-7-october-2015.
- I also drew particularly on another article written by a Chisholm Centre researcher, and I commend this article to the reader. For this, see Emanuel Nicolas Cortes Simonet, “Older Persons in Australia: Secular and Catholic Perspectives,” Chisholm Health Ethics Bulletin 20, no. 3 (Autumn 2015): 9–12.
- David Wiles, “Who is old?: defining old age,” Australian Journal on Ageing 6, no. 4 (1987): 24.
- Laurence McNamara, “Walking on Three Legs in the Afternoon,” (paper presented at the annual conference of the Australian Catholic Theological Association, Melbourne, 7–10 July 2016).
- Judy Gregurke, “Older Persons Giving Care,” CCCHE, http://chisholmhealthethics.org.au/system/files/jg_presentation.pdf.
- Mary Kite et al., “Attitudes Toward Younger and Older Adults: an Updated Meta-Analytic Review,” Journal of Social Issues 61, no. 2 (2005): 241–266 at 245.
- Jennifer Richeson and Nicole Shelton, “A Social and Psychological Perspective on the Stigmatization of Older Adults,” in When I’m 64, ed. Laura Carstensen and Christine Hartel (Washington: The National Academies Press, 2006), 190.
- Jon Nussbaum et al., “Ageism and Ageist Language Across the Life Span: Intimate Relationships and Non-Intimate Interactions,” Journal of Social Issues, 61 no. 2 (2005): 287–305 at 294.
- Australian Human Rights Commission (AHRC), Fact or fiction? Stereotypes of older Australians (Sydney: AHRC, 2013), 4–5, https://www.humanrights.gov.au/sites/default/files/document/publication/Fact%20or%20Fiction_2013_WebVersion_FINAL_0.pdf.
- Ibid., 8
- Lonergan Research Pty Ltd, "Ageing Workforce in the New Zealand Crown Entity Sector Survey Report 2014," online at http://superseniors.msd.govt.nz/finance-planning/paid-work/age-discrimination.html.
- Volunteering Australia, State of Volunteering in Australia, 2012, http://www.volunteeringaustralia.org/wp-content/uploads/State-of-Volunteering-in-Australia-2012.pdf.
- Gregurke; Anne Gray, “The social capital of older people,” Ageing and Society 29, no. 1 (2009): 5–31 at 6. Social capital is “the array of social contacts that give access to social, emotional and practical support” within communities.
- Pontifical Council for the Laity, The Dignity of Older People and Their Mission in the Church and in the World, 1 October 1998, Holy See, http://www.vatican.va/roman_curia/pontifical_councils/laity/laity_en/archivio/rc_pc_laity_doc_05021999_older-people_en.htm. The Pontifical Council calls these qualities the “charisms of old age.”
- “Your Rights – Elder Abuse,” Senior Rights Victoria, http://seniorsrights.org.au/your-rights/.
- Judith Ireland, “Financial abuse of seniors a problem for all ages,” 19 October 2015, Sydney Morning Herald, http://www.smh.com.au/federal-politics/political-news/seniors-at-risk-of-fraud-financial-abuse-warns-age-discrimination-commissioner-20151016-gkaomk.html.
- Senior Rights Victoria; Scott Pape, “The dirtiest, slimiest, most heartbreaking scam of them all,” 22 May 2016, Barefoot Investor, https://barefootinvestor.com/the-dirtiest-slimiest-most-heartbreaking-scam-of-them-all/.
- K. Glasgow and J.L.Fanslow, "Family Violence Intervention Guidelines: Elder Abuse and Neglect", Wellington: Ministry of Health. 2006
- National Center on Elder Abuse, 1998, p. 12, in “Under the Radar: New York State Elder Abuse Prevalence Study,” May 2011, http://www.ocfs.state.ny.us/main/reports/Under%20the%20Radar%2005%2012%2011%20final%20report.pdf.
- Homer and Gilleard (1990), reported in Acierno et al, “National Elder Mistreatment Study,” March 2009, https://www.ncjrs.gov/pdffiles1/nij/grants/226456.pdf.
- Pontifical Council for Justice and Peace, Compendium of the Social Doctrine of the Church, n. 222, 2 April 2004, Holy See, http://www.vatican.va/roman_curia/pontifical_councils/justpeace/documents/rc_pc_justpeace_doc_20060526_compendio-dott-soc_en.html.
- The Australian bishops’ 2016-17 Social Justice Statement will also explore these issues. It is titled A Place at the Table: Social Justice in an Ageing Society. I am honoured to have been invited to launch this statement in September.
- John Paul’s speech on this day is quoted in John Paul II, Christifideles laici, n. 48, 30 December 1988, Holy See, http://w2.vatican.va/content/john-paul-ii/en/apost_exhortations/documents/hf_jp-ii_exh_30121988_christifideles-laici.html
- The reference details for this statement are above in endnote 16.
- John Paul II, Letter of His Holiness Pope John Paul II to the Elderly, n. 12, 1 October 1999, Holy See, http://w2.vatican.va/content/john-paul-ii/en/letters/1999/documents/hf_jp-ii_let_01101999_elderly.html.
- Benedict XVI, “Visit to the Community of Sant’Egidio’s Home for the Elderly Viva Gli Anziani, 12 November 2012, Holy See, http://w2.vatican.va/content/benedict-xvi/en/speeches/2012/november/documents/hf_ben-xvi_spe_20121112_viva-anziani.html.
- Francis, “Meeting of the Pope with the Elderly,” 28 September 2016, Holy See, http://w2.vatican.va/content/francesco/en/speeches/2014/september/documents/papa-francesco_20140928_incontro-anziani.html.
- Francis, General Audience, 4 March 2015, Holy See, http://w2.vatican.va/content/francesco/en/audiences/2015/documents/papa-francesco_20150304_udienza-generale.html.
- Francis, General Audience, 11 March 2015, Holy See, http://w2.vatican.va/content/francesco/en/audiences/2015/documents/papa-francesco_20150311_udienza-generale.html.
- Francis, Amoris Laetitia, n. 191–193, 19 March 2016, Holy See, http://w2.vatican.va/content/francesco/en/apost_exhortations/documents/papa-francesco_esortazione-ap_20160319_amoris-laetitia.html.
Book Review: “Dear Life. On Caring for the Elderly” by Karen Hitchcock
Quarterly Essay. Issue 57, March 2015. Black Inc., Schwartz Publishing Pty. Ltd. Collingwood, Australia.
Reviewed by Sue Buckley
Karen Hitchcock is a staff physician at a large Australian city public hospital. In this Essay (short book) she describes how social attitudes towards the elderly shape the way rest-homes, hospitals, and health professionals organise and either limit or extend their care of the elderly. Hitchcock addresses a number of ethical issues – futility, over- and under-treatment, burden, euthanasia, advanced care directives – interspersing these with moving stories of real people and events. These stories are not just dramatic devices but beautifully rendered accounts of interactions she has experienced with her own family members and her patients.
The Essay as a whole challenges current pejorative views of the elderly - the ‘oncoming grey tsunami of the sick and frail’, the ‘swelling ranks of “greedy geezers”’ - but it is especially critical of the attitudes towards the elderly held by some health professionals and how these influence treatment decisions. If you are old, with two or three organs failing, ‘can no longer negotiate your stairs to go and buy food’, then you are seen as having problems that cannot be cured. These patients, described variously as ‘crumbles’, ‘bed blockers’ or ‘gen med specials’ are not just unwanted in acute hospitals, but if they do arrive they are likely to receive different treatment from younger patients as physicians view their treatment as ‘futile’. Hitchcock provides some captivating accounts of particular patients and how they responded to treatment when ‘futility’ was overruled.
Hitchcock bravely confronts the costs of treatment while challenging some commonly held assumptions. One that we hear often is that ‘the last year of our lives is when the most health-care dollars are spent’. Hitchcock acknowledges that increasing age and increasing health expenditure ‘go hand in hand’, but points out that this is because there is a greater chance of dying when you are old than when you are young. In fact, the same amount is spent on each death, young or old and, contrary to most commentary, hospital costs associated with the last year of life actually fall with age; data from New South Wales indicates that people aged ninety-five years and over incurred less than half the hospital costs of those who died aged 65-74 years. Responding to critiques that claim the public health system is ‘unsustainable’ and that push for a more private, US-style system, Hitchcock points out that as far as treatment of the elderly goes, ‘free markets lead to over-treatment, while publicly funded systems risk sometimes unexamined and discriminatory rationing’. She concludes that ‘we need to shift our focus to improving care. It has been limited enough.’
The second half of the Essay deals with dying. It begins with stories of patients for whom decisions about ending treatment needed to be made. The first describes Hitchcock’s own father’s death and the burden of having to make a decision to switch off the machines keeping him alive. The second story tells of an elderly man with severe heart failure who ‘hated hospital’ and wanted to die. Hitchcock describes spending time with him, learning why he no longer wanted to live and finding ways of enabling him to be discharged from hospital to an enjoyable life. The third story describes the admission to hospital of an elderly man with mild dementia who had completed an advance care plan, possibly under the duress of a much younger wife. The wish not to be a burden was prominent in the plan and caused concerns for Hitchcock. She questions the reliance on advanced care plans which might be made by someone in their seventies but no longer reflect their wishes as they reach their nineties. Impairments once thought of as intolerable may turn out to be bearable after all. She quotes Thomas Nagel: ‘Does autonomy really give your past self the authority to kill off this later self?’
Hitchcock also questions the reality of the ‘good’ or ‘ideal’ death and challenges the notion that dying at home is preferable to dying in hospital. As she points out, the practicalities of dying at home are often too much for family members and besides, there may be no one at home to look after them.
The essay ends with a challenge to ‘we, the living’ to see ‘the elderly’ as the people they actually are: ‘The elderly, the frail are our society …They worked and loved and lived – and can continue to do so. … Right now we need the resources to care better for the elderly in the institutions we have imperfectly built, and we need deep social transformation so that many more people can live on in their communities and homes. We must remain aware of our ageism in every program and policy we implement.’
This moving essay is written with warmth and elegance and discusses some important ethical issues with clarity and practical wisdom. Its questioning of many current assumptions about the elderly and how they should be treated is well-timed given the upcoming challenges to our health and care systems from an aging population.
Sue Buckley is a researcher for The Nathaniel Centre
Submissions to the Health Select Committee Investigation into Ending One’s Life:
Submissions to the Health Select Committee from:
JoCare: Caring for Neighbours
Kerri Anne Brussen
Australians prefer a faith that “rolls up its sleeves.1”Recently at St Joseph’s in Melbourne an outreach program, JoCare, has been introduced to engage with older socially isolated persons within the local neighbourhoods. Drawing on a strong tradition of volunteering in Catholic parishes, the JoCare program seeks to involve volunteers from within our parish as well as our local community. Thus, for some, volunteering with JoCare is their faith in action, however, for others it may be a desire to do something for the common good – helping out a neighbour and building community.
The main focus of JoCare is volunteers visiting socially isolated older persons in their homes on a regular basis, either weekly or fortnightly. They share an activity such as the crossword, reading a book or doing a puzzle. Others go out for a gentle walk. We also run a monthly gathering where older persons from the parish and local area come together to play games and cards or just to have a chat. Furthermore, we have a number of volunteers who either regularly or on an ad hoc basis provide transport for short local trips to go shopping or to attend medical appointments and church services. After each visit, volunteers provide a brief written report to the JoCare coordinator2. Our first ‘neighbours’ 3 came from within the parish, but we are now receiving referrals from local council and other agencies who deliver in-home care to older persons.
Our volunteers undertake the visiting in pairs (where possible) to ensure the safety of all involved. It also provides continuity - if on occasions one volunteer is unavailable then the other can visit. The other benefit for JoCare is that as new volunteers become part of our program they are able to be mentored in their role by a seasoned volunteer.
To provide the best possible service to those who access the JoCare program we run a training day for our volunteers which involves looking at the world of volunteering and the gifts a person brings to volunteering. We examine volunteer rights, responsibilities, and boundaries4. We discuss privacy and harassment laws. But more importantly we have conversations concerning the mind-set that volunteers may bring when visiting an older person. We talk of orientating ourselves to the person. We ask our volunteers to give full attention to the person they are visiting, encountering them as they are, for who they are. We discuss the limitations of a person’s “life space”5. We consider this day of conversation an important aspect of the JoCare program. Volunteers also undergo police checks and working with children checks6.
Thus, we at JoCare seek to act responsibly toward our volunteers just as we strive to encourage our volunteers to act responsibly. The documentation for JoCare is written within the framework of The National Standards for Volunteer Involvement7. While, this standard is not mandatory for Australian organisations that engage with volunteers, by establishing procedures and policies for JoCare within this framework, all involved in the program can be assured that JoCare is run in accordance with the ‘best practice’ for volunteering. We consider documentation is important for volunteers just as it is for paid workers. Volunteers are also provided with a volunteer manual.
What follows is a rationale for JoCare and its implementation.
Theology of Ageing
The Hebrew Bible has at least two hundred and fifty references to old age, embracing views of human aging as an integral part of Israelite society and a blessing from God. The God of the Old Testament is sometimes known as a liberator of the poor and marginalised. “Learn to do good; seek justice, rescue the oppressed, defend the orphan, plead for the widow,” (Is 1:17). The incarnation of Jesus authenticates the dignity and worth of human beings. As the early Christian church developed it gave considerable attention to the role and contribution of elders and widows in the faith community. They are owed respect as ageing persons and are called upon to mentor and provide spiritual guidance to other Christians (1 Tim. 5:1-3, 1 Tim. 5:9-10, Titus 2:3-5)8.
Christ gave two commandments. The first is to love God with all your heart, and the second is to love your neighbour as yourself (Mt. 22:36-40). This is what we seek to do at JoCare. Neighbourly love entails rising above the differences between persons and realising that each person is equal to the other; no-one has a greater value than another. A person's value and dignity belongs with who they are, not with what they can do.
Trinitarian theology offers an insightful window on relationships. The Trinity is profoundly relational with each of the three persons of the Trinity, the Father, the Son and the Holy Spirit, being unique but ultimately bonded to the other in relationship, signifying unity yet diversity. Each person of the Trinity is irreplaceable and cannot reach their potential unless in relationship with the others. This is the cornerstone of community love where our humanity is completed. God in his love takes creation into a personal relationship through the humanity of his Son and through the gift of the Spirit we become whole. Therefore, when we reach out to others in companionship our humanity is deepened by the humanity of the other9.
Social isolation has become a major health issue for older people living independently in local communities. One of the main reasons JoCare has initially focussed on older persons is to minimise this experience of isolation and provide a sense of connectedness10. Social isolation is often used interchangeably with loneliness. It can come about when an individual experiences a sense that they do not belong or are engaged with others. Social isolation may be voluntary where an individual may withdraw from contact with others. It may also be involuntary when an older person experiences feelings of loneliness through a lack of close friends or confidants11.
Social isolation in older persons and its related health implications has been the subject of much research. Contributing factors may be psychological and physical. Economic constraints, as well as environmental safety issues, also affect a person’s ability to maintain relationships with others. Increased drinking, smoking, a greater risk of suicide, re-hospitalisation, cognitive decline, mental health issues and cardiac heart disease are all factors bringing about serious health outcomes12.
Research shows that involvement with a religious organisation aids in significant ways to maintaining social networks. Other research has focussed on attendance at church services. Frequent attendees of religious services experienced lower rates of mortality than those who were infrequent participants13. One of the main emphases of the JoCare transport program is assistance to those requiring access to transport to attend church services. This enhances their continuing participation in their community.
While many parishes run programs similar to JoCare or undertake some aspects of the JoCare program within their parish, there is considerable evidence in support of extending such programmes beyond parish boundaries as JoCare does. Demographically, in Australia between 1994 and 2014, the percentage of the population aged 65 years and over increased from 11.8% to 14.7%. Between 1994 and 2014 the percentage of the population aged 85 years and over increased by 153% while the total population growth for Australia was only 32%14. These groups are expected to grow at an even greater rate over the next decade.
In recent times, a number of social determinants of health have been discerned. Two of these highlight the importance of social inclusion. The first emphasises being part of a community, where a person engages with a support network of family and friends. The second is the provision of and access to affordable transport. This allows a person to access services and social supports15.
Further, Australia is a signatory to The Madrid International Plan of Action on Ageing which was adopted in April 2002. The key task of the plan is “building a society for all ages”. We are challenged to oppose discrimination towards the older person and to assist in creating a secure future, where the dignity of everyone regardless of age is respected16.
Pope Saint John Paul II in Familiaris Consortio notes "the life of the aging helps to clarify a scale of human values; it shows the continuity of generations and marvellously demonstrates the interdependence of God's people.”17
Pope Francis describes abandoning or discarding the elderly as a sin, commenting that a civilisation can be judged on its treatment of the elderly. He went further when he noted, "[t]he church cannot and does not want to conform to a mentality of intolerance, even less so one of indifference and disregard toward old age," concluding that "[w]here the elderly are not honoured there is no future for the young."18
Elizabeth MacKinlay observes that a “life without meaning is a life without hope”. Finding meaning is essential for human flourishing particularly when older persons undertake the “last great task of life”.19
Some have questioned the structure of JoCare and the requirements for volunteers to become part of the program. Our response is often a question. If your parent was receiving visitors in their home through a program such as JoCare, would you not feel more comfortable knowing that someone cared enough about your parent to ensure that the best possible practises had been undertaken prior to the commencement of the visiting schedule? While we agree a balance needs to be struck between regulations and care, we also need to be mindful of the contemporary world in which we live.
lrenaeus describes “the glory of God as human beings being fully alive.”20 At JoCare our vision is to enhance the lives of others, encouraging them to become ‘fully alive’. While our initial focus has been to augment the lives of socially isolated older persons in our local area, we anticipate expanding the program to include all those who for a variety of reasons find themselves isolated within their communities.
Kerri Anne Brussen is the JoCare Coordinator at St Joseph's Parish, Malvern. JoCare is a free service supported by St Joseph's Malvern and Cabrini Health.
 N. Connolly, “New Evangelisation in Australia,” SEDOS Bulletin 45 (2013): 128-139 at 129.
 These reports are written within the limits of the privacy regulations.
 Those who access the JoCare program are known as ‘neighbours’. We chose this name as our vision is to create neighbourhoods where people are connected. Clients, patrons or customers did not fit our vision.
 Catholic Community Services NSW/ACT, http://catholiccommunityservices.com.au/volunteer-log7.in/video-index/video-personal-and-professional-boundaries. This is an excellent video demonstrating the boundaries between a volunteer and those they are assisting.
 “Life space” reflects the range of a person’s physical and social mobility and how this range is impacted by gender, physical functioning, cognitive functioning, financial means, culture and the ability to drive. Julie E Byles et al., “Life space and mental health: a study of older community-dwelling persons in Australia,” Aging and Mental Health 19, no. 2 (2015): 98-106.
 In Australia these are legal checks which provide information on a person’s criminal record.
 Volunteering Australia, “The National Standards for Volunteer Involvement,” Volunteering Australia, http://www.volunteeringaustralia.org/policy-and-best-practise/national-standards-and-supporting-material/ (accessed May 28, 2015).
 DeeAnn Klapp, “Biblical Foundations for a Practical Theology of Aging,” Journal of Religious Gerontology 15, no. 1-2 (2003): 69-85 at 69-77.
 Rosalie Hudson, “Ageing and the Trinity, Holey, Wholly, Holy,” in Ageing, Spirituality and Well-being, ed. Albert Jewel (United Kingdom: Jessica Kingsley Pty Ltd, 2003), 86-100.
 Robyn A. Findlay, “Interventions to reduce social isolation amonst older people: where is the evidence?” Ageing and Society 23 (2003): 647-658 at 648.
 A. P. Dickens et al., “Intervention targeting social isolation in older people: a systematic review,” BMC Public Health 11 (2011): 1-22 at 2.
 Nicholas R. Nicholson, “A Review of Social Isolation: An Important but Underassessed Condition in Older Adults,” Journal of Primary Prevention 33 (2012): 137-152 at 137, 140-5.
 Ibid., 143-4; Simone Couzens et al., “Social Participation and Depression in Old Age: A Fixed Effects Analysis in 10 European Countries,” American Journal of Epidemiology (2015): doi: 10.1093/aje/kwv015
 Australian Bureau of Statistics, “3101.0 - Australian Demographic Statistics, Jun 2014,” Australian Bureau of Statistics, http://www.abs.gov.au/ausstats/abs@.nsf/0/1CD2B1952AFC5E7ACA257298000F2E76?OpenDocument (accessed May 25, 2015).
 Inner South East Partnership in Community and Health, Population Health Atlas Planning Resource, (LDC Group: Melbourne, 2013), 7.
 P. Theron, “Practical theologians'calling to serve in the field of gerontology,” Theological Studies 69 (2013): 1-7 at 1-2.
 Pope John Paul II, Familiaris consortio, Holy See November 22, 1981, n. 27, http://w2.vatican.va/content/john-paul-ii/en/apost_exhortations/documents/hf_jp-ii_exh_19811122_familiaris-consortio.html (accessed May 24, 2015).
 Pope Francis, “Vatican Insider, Francis: It is a sin to abandon or discard the elderly,” La Stampa (2015), http://vaticaninsider.lastampa.it/en/the-vatican/detail/articolo/francesco-francis-francisco-39513/ (accessed March 8, 2015).
 Elizabeth MacKinlay, “Baby Boomers Ageing Well? Challenges in the Search for Meaning in Later Life,” Journal of Religion, Spirituality and Aging 26 (2014): 109-121 at 115.
 Stephen Ames, “Finding the way - A Theology of Ageing,” Benetas, http://www.benetas.com.au/research-opinion/research-projects/finding-way-theology-ageing#.Vi7W3bcrKUk (accessed May 15, 2015).
Valuing the elderly and keeping them socially connected
Staff of The Nathaniel Centre
We often read or hear the term 'grey tsunami' used to describe the large numbers of 'baby boomers' who are reaching the age of retirement, and we are increasingly warned about their negative economic impact, particularly the effects of a shrinking workforce and the increased demand for health care services. While many would challenge these assumptions, arguing for an alternative and more optimistic view based on people working past retirement and experiencing healthier years later in life due to improvements in diet and access to medical care, still it is the negative language that seems to prevail. The constant use of phrases such as 'old-age dependency ratio', 'decline in functional capacity' and 'the economic burden of an ageing population' to describe the elderly, arguably reveal more about ourselves and our attitudes to ageing than about the elderly – symptomatic of a society that fears growing old, that fears dependency and vulnerability and is willing to judge the elderly more and more in deficit terms, often through an economic filter.
The growing rates of elder abuse in New Zealand are well-documented and growing rates of social isolation amongst the elderly are further manifestations of a society in which the elderly are becoming disenfranchised and marginalised.
A recent article in the New Zealand Listener (April 4-10, 2015) describes a 'loneliness epidemic' affecting the elderly in this country. Recent New Zealand studies reveal that around 8 percent are severely lonely and up to 45 percent moderately lonely1. Meanwhile other research shows clearly that loneliness is related to lower levels of physical and mental health.
Many elderly people, but especially those who are socially isolated, suffer from depression2. The coroner's report for 2014 found that the number of suicides recorded in over-60 year olds went up from 75 in 2012-13 to 97 in 2013-14. "The rise in older people taking their own lives is something I highlighted last year, and this trend has continued, particularly for the above-80-year-old age cohort."3 We also know that in places where assisted suicide or euthanasia is available, the most common end of life concerns are not pain-related but existential, including loss of autonomy, fear of being a burden, a decreasing ability to participate in activities that made life enjoyable, fear of losing control and social isolation4.
The isolation of the elderly is partly explained by the fact that families are smaller, more fragmented and more likely to be geographically dispersed. Significant numbers of the elderly now live in different cities and even different countries than their children or their siblings, and even when living nearby, adult children are often 'time poor' – i.e. busy with their own children and jobs.
Where elder abuse is happening, families are very often part of the problem; 50 percent of alleged abusers are family members, usually sons and daughters. It is conservatively estimated that around 9,000 older New Zealanders suffer some sort of abuse or neglect each year,5 psychological abuse being the most common, followed by financial abuse. Loneliness or isolation is a known risk factor for abuse, and often the abuse is not reported due to feelings of shame.
The isolation, loneliness and abuse of the elderly are symptomatic of a culture that views the elderly as having outlived their usefulness. This has been described as 'ageism', a systematic stereotyping of people because they are old which leads to them being viewed as "lesser beings, asexual, intellectually inflexible and at the same time forgetful and unproductive."6 Describing this shift, Pope Francis has repeatedly criticised the fact that the elderly are ignored, or seen as a burden who do not produce and can be discarded: "Then when we become older, especially if we are poor, sick and alone, we experience the shortcomings of a society planned on efficiency, which consequently ignores the elderly." Pope Francis warns of a 'poisonous' culture where the elderly are 'abandoned in institutions' where they may suffer physical neglect or loneliness. He sees older people and children as being particularly at risk because they are not economically productive. "But this culture of 'discarding' human beings hurts our world ... How many times we discard older people with attitudes that are akin to a hidden form of euthanasia."7
Thankfully, there are various commentators who are challenging the utilitarian view of the elderly exemplified in a number of extremely positive and imaginative developments taking place internationally.
Atul Gawande, for example, writes of 'nursing home' managers in the United States who have questioned the rigid focus on safety and have given autonomy back to the residents in a variety of ways. He describes how in one home the new Medical Director found 'despair in every room' and identified the 'three plagues' of nursing home existence as boredom, loneliness and helplessness. The response of the new Director was to inject life back into the home in the form of animals, plants and people: "The inhabitants of Chase Memorial Nursing Home now included one hundred parakeets, four dogs, two cats, plus a colony of rabbits and a flock of laying hens. There were also hundreds of indoor plants and a thriving vegetable and flower garden. The home had on-site child care for the staff and a new after-school programme. Researchers studied the effects of this programme over two years, comparing a variety of measures for Chase's residents with those of residents at another nursing home nearby. Their study found that the number of prescriptions required per resident fell to half that of the control nursing home. Psycho¬tropic drugs for agitation, like Haldol, decreased in particular. The total drug costs fell to only 38 per cent of the comparison facility. Deaths fell 15 per cent. The study couldn't say why. But Thomas [the Medical Director] thought he could. 'I believe that the difference in death rates can be traced to the fundamental human need for a reason to live' ... The most important finding was that it is possible to provide them with reasons to live, period. Even residents with dementia so severe that they had lost the ability to grasp much of what was going on could experience a life with greater meaning and pleasure and satisfaction."8
In the Netherlands there is now a nursing home that allows students to live there for free in exchange for spending at least 30 hours a month with the home's senior citizens. "They go see the pensioners for a chat, they play games, go with them to the shopping centre, (and) do shopping for those who can't."9 The students also cook meals and plan activities based on their interests. For example, one student provided a group who were curious about graffiti with spray cans and cardboard to help them learn about the art form.
Meanwhile a nursing home in Seattle has pre-schoolers come in for their classes and to spend time with the elderly. The pre-schoolers come with "no assumptions, no judgement and no awkwardness – just lots of time to spend and heaps of love to give."10 Filmmaker Evan Briggs shot a film of the retirement home over the year 2012-2013; she said residents had a "complete transformation in the presence of the children. Moments before the kids came in, sometimes the people seemed half alive, sometimes asleep. It was a depressing scene. As soon as the kids walked in for art or music or making sandwiches for the homeless or whatever the project that day was, the residents came alive."11 As the school describes, the program has benefits for both the children and the elderly; the elderly find a new sense of self-worth and enjoy the joy and laughter that toddlers bring to any setting. The children learn about the aging process, learn to accept people with disabilities and receive unconditional love and attention from the residents12.
A community-based initiative closer to home, operated by St Joseph's Malvern parish in Melbourne, engages residents as volunteers or recipients for services offered by Jo Care.13 Theirs is a free service aimed at encouraging friendship and support within the local area. The volunteers might visit for a chat, share a book, go for a walk, or teach a new skill, but the focus of the program is to engage with socially isolated individuals.
In Limerick, Ireland, there is The Compassionate Communities Project14 which works in partnership with individuals, groups and communities to provide a range of support to people living with a serious life-threatening illness, as well as those facing loss and those experiencing bereavement. One of their groups, the Good Neighbourhood Partnership15 , has volunteers providing social and practical support to people with palliative care needs. The aim of the project is to enable people to identify their social and practical needs and have them met from within their own circle of community. The project had identified that often friends and neighbours want to help but are sometimes unsure how to. The Partnership makes links between those who need social and practical support and those living close-by who would like to offer help. Activities include "walking the dog, doing the shopping, collecting a prescription, going to the library, filling a coal bucket, lighting the fire, mowing the lawn, making a snack, tidying up or sitting with a person who needs a break."16
Developments such as these provide real and effective opportunities to challenge the growing spread of ageism; they have the potential to help us all view the elderly differently, understand better the contribution that they make to the community, allow them real value and dignity, and at the same time enrich our communities with demonstrations of care and compassion.
Staff of The Nathaniel Centre
 An Auckland Council commissioned study found that 9 percent of Auckland residents aged over 50 were severely lonely and 44.5 percent moderately lonely; the New Zealand Longitudinal Study of Aging found that 3 percent of those between the ages of 48 and 90 years were very severely lonely, 7 percent were severely lonely and 41.2 percent were moderately lonely.
 Depression affects 15-20 percent of older people. Ministry of Health: Mental Health and Addiction Services for Older People and Dementia Services. 2011. http://www.health.govt.nz/system/files/documents/publications/mental-health-addiction-services-20jun.pdf
 Report of Chief Coroner 20 August 2014. http://www.justice.govt.nz/courts/coroners-court/suicide-in-new-zealand/suicide-statistics-1/2013-14-annual-suicide-stats-press-release
 See “‘Be Careful what you wish for.’ Euthanasia and Rob Jonquiere’s ‘ideal’ society”. The Nathaniel Report, issue 45, pp. 4-5.
 Age Concern reports 1500 confirmed cases of elder abuse or neglect; it is estimated that only 16% of all abuse incidents come to the attention of service agencies. https://www.ageconcern.org.nz/ACNZPublic/Services/EANP/ACNZ_Public/Elder_Abuse_and_Neglect.aspx#howmuch
 Families Commission: Elder Abuse and Neglect. Exploration of Risk and Protective Factors. Research Report No. 1/08, January 2008. P. 16
 Gawande, Atul “Being Mortal: Illness, Medicine and What Matters in the End”. Profile Books Ltd, London. 2014.
‘Be careful what you wish for.’ Euthanasia and Rob Jonquiere’s ‘ideal’ society
An uncle of mine often used to quip: 'Be careful what you wish for!' It's a reminder that things we desire often come with unforeseen and undesirable consequences. If there was ever an instance in which this applies it is in regard to euthanasia and assisted-suicide
Proponents of a law change believe the issue is fundamentally about 'choice'. Allowing those who want it to choose when and how they die would not affect those who think otherwise, it is argued. Euthanasia/assisted-suicide can seem acceptable, fair and safe when the focus is solely on individual 'hard' cases.
As someone opposed to euthanasia and assisted suicide, I am often accused of imposing my choices on others. Actually, I don't have a problem with people exercising choice. In an 'ideal' world, a world of total empathy and inclusion, a world of equitable access to health care in which the elderly were truly valued, I could live with people being given this choice. But we don't live in such a world.
A robust, informed debate about euthanasia and assisted-suicide needs to take into account a number of interacting social factors that define our current New Zealand context: the continuing rise of elder abuse; the increasing social isolation of the elderly; a growth in the overall proportion of elderly; greater pressure on families to provide care; smaller and more fragmented families; an increasing tendency to see persons from a narrow functional perspective; and increasing economic pressures on our health system and families. As one commentator bluntly put it: "I oppose introducing euthanasia in a toxic climate."
The availability of state-sanctioned 'mercy killing' in this environment will, in the first instance, create additional pathways for abuse and neglect. There has never been a more dangerous time to introduce such laws.
There are also the threats that euthanasia/assisted-suicide would pose for quality end-of-life care, our trust in doctors, its potential impact on youth suicide prevention and the inevitable extension to children and to those incapable of giving consent. Further, in the current "toxic climate", a law change will reframe the way the sick, elderly and disabled see themselves and are seen by others. As an experienced nurse recently wrote: "Do assisted-suicide supporters really expect doctors and nurses to assist in the suicide of one patient, then go care for a similar patient who wants to live, without this having an effect on our ethics or empathy? Do they realise this reduces the second patient's will-to-live request to a mere personal whim — perhaps, ultimately, one that society will see as selfish and too costly?" In other words, hey realize that this reduces the second patient's will-to-live request to a mere personal whim—perhaps, ultimately, one that society will see as selfish and too costly? How does this serve optimal health care, let alone the integrity of doctors and nurses who have to face the fact that we helped other human beings kill themselves? expanding personal freedoms to include euthanasia or assisted-suicide undermines the right to remain alive without having to justify one's existence.
As overseas and New Zealand reports show, and contrary to popular opinion, the main reasons people favour euthanasia are not related to extreme physical pain (an experienced palliative-care physician reassures me that these days no-one need die in physical pain) but to such things as loss of autonomy [i], feelings of being a burden and dependency on others [ii], decreasing ability to participate in activities that made life enjoyable, fear of losing control, and social isolation [iii].
This knowledge is not at all contentious. Pro-euthanasia doctors such as Dr Rob Jonquiere openly recognise that many concerned elderly people will choose euthanasia or assisted suicide for such reasons. As Jonquiere noted in a 2013 presentation: "The elderly have feelings of detachment ... The elderly have feelings of isolation and loss of meaning. The elderly are tired of life ... Their days are experienced as useless repetitions. The elderly have become largely dependent on the help of others, they have no control over their personal situation and the direction of their lives. Loss of personal dignity appears in many instances to be the deciding factor for the conclusion that their lives are complete". [iv] In the same presentation, Jonquiere freely and readily admits that "the problem is not so much physical, but social and emotional ..."
What is particularly frightening and distressing, however, is the fact that Jonquiere's response to this is to advocate even more vociferously for these people to have the right to die. "The conclusion that life is completed is reserved exclusively for the concerned persons themselves ... They alone can reach the consideration whether or not the quality and value of their lives are diminished to such an extent that they prefer death over life." All of which leads him to the cold-hearted and brutal conclusion that it is "never for the state, society or any social system" [v] to question or otherwise interfere in such a person's decision.
Looked at through a lens of social justice and inclusion, Jonquiere's analysis and conclusion is deeply disturbing. The intolerable situation that increasing numbers of elderly people find themselves in might be a direct result of neglect, ageism, abuse, ignorance, lack of funding for services, poor public policies or, worst of all, a lack of will to care from family and/or society. But in Jonquiere's ideal society the most moral and caring thing to do is to not interfere with people's choice to kill themselves or be killed by a doctor! In effect, this means that the state, which governs over the society in which these persons live, the very same society that will in very many cases be complicit in their intolerable condition, can assuage its conscience by assisting these people to die.
This is not just. This is not the sort of society I care to live in. Rather than appealing to the best in people, rather than calling forth the sort of commitment and care that is quintessentially human, Jonquiere's 'solution' amounts, metaphorically, to a radical 'lowering of the bar' that sets the standards for inclusion in society.
It raises the spectre of a society in which elderly people's deepest needs, their need to overcome isolation, neglect and the ignominy of feeling a burden, will be ignored in favour of making it easy for them to dispose of themselves; their real needs papered over by appeals to the principles of autonomy and compassion which are morally vacuous because the choice to die would, for such people, be a choice made out of desperation, a choice made because of a lack of real choices, a tissue-thin choice that is ultimately the product of institutionalised familial and/or societal neglect.
This is precisely what Pope Francis was referring to when he recently commented that abandoning the elderly and disabled is itself a form of euthanasia. In fact, Jonquiere's response is just as much about abandoning the foundational principles of an ethical and caring society as it is about abandoning particular individuals.
We can do better than that! We must do better than that for the sake of future generations, our children and grandchildren who, for better or worse, will inherit the legacy of the choices we make. 'What sort of a world are we shaping for them?' is a key question not often asked.
Personal dignity and respect, as well as a commitment to equality and social justice, calls for nothing less than a whole-hearted active dedication to holistic care for those who are suffering, elderly or disabled. It will require a determined and focussed effort to ensure that what makes us distinctively human – our ability to show and receive care – is reflected in our personal and societal attitudes and familial, social, political and cultural structures.
True 'death with dignity' occurs when a person's deepest physical, emotional, social, cultural and spiritual needs are met, when a person feels loved and cared for and feels included and valued no matter what. It is, I accept, not the 'easy way out'. Neither is it for the faint hearted. At this point in our history, the call to care will demand from us great resourcefulness as well as sacrifice. But then, as life teaches us over and again, the easy way out rarely pays dividends.
We must be honest about the unintended, long-term, negative consequences of euthanasia and assisted-suicide for both individuals and society. There would be a huge social price to pay for legalising state-sanctioned killing, counted in lives prematurely ended because of a sad perception by persons that they were 'past their used by date' and had become 'useless eaters'.
Be careful what you wish for!
Dr John Kleinsman is a member of The Care Alliance and director of The Nathaniel Centre
[i] See, for example, Oregon Public Health Division – 2013 DWDA Report at http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year16.pdf
[ii] See, for example, Malpas, P, K Mitchell, and M Johnson. "'I Wouldn't Want to Become a Nuisance under Any Circumstances' - a Qualitative Study of the Reasons Some Healthy Older Individuals Support Medical Practices That Hasten Death." New Zealand Medical Journal 125, no. 1358 (2012): 9-19.
[iii] See, for example, Nicole Steck, Christoph Junker, Maud Maessen, Thomas Reisch, Marcel Zwahlen, Matthias Egger, and for the Swiss National Cohort "Suicide assisted by right-to-die associations: a population based cohort study". Int. J. Epidemiol. (2014) 43 (2): 614-622 first published online February 18, 2014. doi:10.1093/ije/dyu010
[iv] Jonquiere, R. Fourth Annual Lecture to the Society for Old Age Rational Suicide, London, September 20, 2013 http://www.soars.org.uk/index.php/pages
Editorial: Euthanasia-on-demand and without demand – let’s not kid ourselves
Dr Rob Jonquiere, Communications Director of the World Federation of Right to Die Societies, has recently completed a tour of New Zealand at the invitation of the New Zealand Voluntary Euthanasia Society.
Dr Jonquiere supports the 'right to die' as a 'human right' and has argued that 'if you can choose what kind of house you're going to live in' why can you not choose what death?' In a lecture given in 2013 (Fourth Annual SOARS Lecture), Dr Jonquiere has outlined how the original pro-choice campaigners in The Netherlands wanted to argue for euthanasia on the grounds of 'self-determination' (that is, on the basis of unfettered personal choice and without needing to fulfil any particular conditions such as being terminally ill) – euthanasia-on-demand.
However, because it was deemed necessary for doctors to be involved in order to gain public acceptance, and because many doctors 'were not looking forward to assist in cases that did not fit within a medical domain', the campaign focus strategically shifted to advocating for a very select group - seriously ill patients. Having achieved this goal, however, the pro-euthanasia campaigners quickly modified their goals. The debate immediately turned to including 'demented human beings with an adequate advance directive; patients with a chronic psychiatric illness who had come to the end of meaningful treatment; and, elderly people who for a variety of reasons judged their lives completed.' [i]
Consequently, there has been a gradual widening of the categories of those eligible for euthanasia in The Netherlands and Belgium; it is no longer necessary for patients to be suffering a 'terminal' illness; psychiatric conditions including depression qualify, and the law in both countries now allows for children to be euthanised.
These changes are not evidence of a 'slippery slope' but are an inevitable consequence of the argument that it is a human right to be able to end one's life. If certain individuals have a 'human right' to make this choice, then it is irrational to restrict this right to only some people; it should apply to anyone who considers their life not worth living and who demands it.
The stated goal of 'euthanasia-on-demand' may well explain why, despite an outward insistence on effective legal safeguards, the practice of euthanasia in The Netherlands and Belgium routinely exists outside of the law. In Belgium, nearly half of all cases are not reported [ii] and in The Netherlands at least 20 percent of cases are unreported [iii] (reporting is mandatory by law in both countries). In unreported cases there is a higher likelihood that legal requirements are not met, such as the need for a written request (involuntary euthanasia), consultation with palliative care physicians, and a requirement that only physicians perform euthanasia. In Flanders, Belgium, in 2007, one study found 32 percent of physician-assisted deaths were without explicit patient request [iv]; another study noted drugs were administered by a nurse in 41 percent of unreported cases (none for reported cases) [v].
In light of the argument that individuals should have the right to decide how and when to end their lives, evidence that the law is not being followed, along with the widening of eligible categories, is not necessarily concerning for euthanasia advocates. Indeed, it is welcomed by those who support euthanasia as a 'human right', seen as an indication that the current situation is too restrictive and as a rationale that the law be further liberalised to reflect (what is now illegal) practice.
Anyone supporting 'voluntary' euthanasia and/or assisted suicide in New Zealand needs to accept that, within a short time, euthanasia will be demanded for children, those with dementia, depression and other mental illnesses as well as for those who are simply 'tired of life' as is happening overseas. Given that these groups include persons incapable of giving consent, it is inevitable that there will be a push to move beyond strictly 'voluntary' euthanasia despite the persistent denials of pro-euthanasia advocates.
In jurisdictions where euthanasia and physician-assisted suicide are already legalised, the move from voluntary to non-voluntary euthanasia has been a very small step. In the Netherlands it has always been the case that it is doctors who make the final decisions about end of life; patients can request it but doctors must ultimately decide. In other words, it is always the doctors who determine whether a person would be 'better off dead' [vi]. When doctors are already the ones judging whether a person would be 'better off dead', there seems little reason why they could or should not make this decision for comatose or incompetent patients without the need for 'informed consent'. Hence, the small step.
Apart from those who are immediately affected, there are wider social consequences, since introducing 'voluntary' euthanasia and physician-assisted suicide will do more than allow a small number of patients who are 'suffering unbearably' to be able to end their lives or have them ended. It will introduce into some of our most important institutions – the medical profession, the nursing profession, hospitals and rest homes – the 'ethic' that it is acceptable to kill, with or without consent; an ethic that will become socially embedded – the so-called 'normalisation' of state-sanctioned killing.
Such an 'ethic' is contrary to and will irrevocably harm these institutions and the human virtues that are most treasured in in our society.
[i] Fourth Annual SOARS Lecture (London, September 20, 2013). http://www.soars.org.uk/index.php/pages
[ii] Smets, T; Bilsen, J; Cohen, J; Rurup, ML; Mortier, F; Deliens, L. "Reporting of euthanasia in medical practice in Flanders, Belgium: cross sectional analysis of reported and unreported cases". BMJ 2010: 341:c5174.
[iii] Onwuteaka-Philipsen, BD; Brinkman-Stoppeleburg, A; Penning, C; de Jong-Krul, GJF; van Delden, M; van der Heide, A. "Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey". Lancet 2012; 380: 908-15.
[iv] Chambaere, K; Bilsen, J; Cohen, J; Onwuteaka-Philipsen, BD; Mortier, F; Deliens, L. "Physician-assisted deaths under the euthanasia law in Belgium: a population-based survey". CMAJ 2010; 182:895-901.
[v] Smets et al. (2010) ibid.
[vi] Keown, J. "Mr Marty's muddle: a superficial and selective case for euthanasia in Europe". J Med Ethics 2006; 32:29-33.
Euthanasia – the bigger picture
Media generated discussions about euthanasia and assisted suicide are often initiated by the story of tragic individual cases. The rhetoric used invariably focuses on 'choice' and the so-called 'right' a person has to choose how and when they die. But this argument fails to recognise that people do not make their 'choices' in a vacuum, that such decisions inevitably involve and concern other people, not least the medical professionals and others who care for them and for others. The following select quotes highlight some of the bigger picture issues associated with legalising euthanasia or assisted suicide.
"The pro-euthanasia lobby talks enthusiastically about 'autonomy' and 'choice'. The truth is that when euthanasia is legalised, personal autonomy and choice are dangerously compromised. Moreover, legalising euthanasia - like capital punishment - has the power to brutalise society." Professor David Richmond.
"The killing decision in euthanasia and assisted suicide isn't really the suicidal person's 'choice': It is the killer's or helper's. In other words, life will end only if the joint venturer in the killing believes the suicidal person's life is not worth living." Wesley J. Smith.
"I've recently had quite a bit to do with one rest home village and I've had a chance to get the feel of the elderly residents and I know for a fact that if you had a voluntary euthanasia regime, the whole tone of that rest home village would be greatly altered as people came to fear the suggestion that they think might be made to them that they should seek euthanasia, that their time has come, that they've lived a long life, that they're being a burden to others, a very expensive burden in some cases, and that they'd be better off dead." Don Mathieson QC.
"Few people would seriously consider legalizing friend- or family-assisted suicide. The inherent dangers of this type of private killing are much too obvious. So the goal is to lend this act professional respectability by promoting physician-assisted suicide—or, more accurately, medically assisted suicide, since nurses also are necessarily involved when the assisted suicide occurs in a health facility or home-health situation.
As a nurse, I am willing to do anything for my patients—but I will not kill them nor help them kill themselves. In my work with the terminally ill, I have been struck by how rarely such people say anything like, "I want to end my life." I have seen the few who do express such thoughts become visibly relieved when their concerns and fears are addressed, instead of finding support for the suicide option. I have yet to see such a patient go on to commit suicide." Nancy Valko.
"The phrase 'death with dignity' is very often used to mean the deliberately procured death of an ill or disabled person, and strongly implies that vulnerable people are 'dignified' only in death.
I strongly believe that the supposed 'right to die' is a subterfuge for what is really a 'duty to die' because society prefers not to provide appropriate support to help us to live with dignity, but prefers the cheaper option of killing. Alison Davis, Disability Activist.
"Disability rights opposition [to legalising euthanasia] is based in reality. While Compassion & Choices and its media friends push policy on the back of one photogenic person's 'choice', we look at the social impact on vulnerable populations. The media repeats the falsehood that there have been no abuses in Oregon, we present evidence that shows the opposite ... When the focus is on an individual, assisted suicide can sound good -- who's against compassion or relieving suffering? But a closer look reveals that assisted suicide puts vulnerable people in mortal danger. The more people learn about the real-world implications of these bills, the more they oppose them. (Our group takes its name -- Second Thoughts -- from this fact)." John B Kelly, Disability Activist
"[The pro-euthanasia] slogan is people should be allowed to die with dignity, which suggests that they don't. I've seen hundreds of people die... it's just part and parcel of your life as chaplain and I would say in the time that I've been chaplain, which is about 35 years, I don't think I can remember a case where people didn't die with dignity." Rev David Orange
"Do assisted suicide supporters really expect us doctors and nurses to be able to assist the suicide of one patient, then go on to care for a similar patient who wants to live, without this having an effect on our ethics or our empathy? Do they realize that this reduces the second patient's will-to-live request to a mere personal whim—perhaps, ultimately, one that society will see as selfish and too costly? How does this serve optimal health care, let alone the integrity of doctors and nurses who have to face the fact that we helped other human beings kill themselves?" Nancy Valko.
Book Review: Five Days at Memorial
Kilian de Lacy
FIVE DAYS AT MEMORIAL BY Sheri Fink
(Atlantic Books Ltd, London, 2013)
This Pulitzer Prize winning book attempts, in over 500 pages, to give as accurate an account as possible of the devastating effect of Hurricane Katrina on New Orleans in August 2005, and in particular of events during and after the crisis, when medical professionals were arrested and accused of having hastened the death of some of their patients.
The prologue paints a dramatic picture of the scene within the hospital when some patients were being evacuated, and the horrendous choices which loomed in the consciences of the dedicated medical staff who had stayed at the hospital to care for their seriously ill patients.
The first chapter gives an overview of previous similar, though less devastating, natural events which should have made authorities aware of what they needed to do in preparation for future natural disasters and from which, as is painfully evident in the ensuing chapters, they had failed to learn, with tragic results.
The author, Sheri Fink, has been the recipient of several journalism awards and was a former relief worker in disaster and conflict zones, so her personal experience of such events is considerable. She conducted hundreds of interviews with doctors, nurses, family members, staff and others involved. She visited the hospital and other sites depicted in the book, and made use of source materials dating from the time of the disaster and its immediate aftermath. All in all, her research was thorough and extensive.
The style of writing is conversational and this brings to life the many characters who played lead roles in the disaster, especially those faced with the prospect of having to help dangerously ill patients who had been placed on Category 3 lists for evacuation, i.e. those who were to be taken out last or, more likely under the circumstances, not at all.
The disaster is painted in all its dreadful detail, the recurring theme being the lack of preparedness of the authorities to deal with the crisis. For instance, despite prior experience of flooding in the basement of the hospital, the power generators were still there, making it inevitable that the power went off as the water from the breached levees in the city flooded the lower parts of the building. Efforts to provide respirators, to keep patients comfortable and cool when the air conditioning failed, to preserve life and hygiene were maintained under increasingly challenging conditions. The inconsistency of communication between those on the ground and authorities elsewhere made painful reading.
Then there were the people: the medical staff, the patients, the families of the patients, the people who had sought refuge from the flood in the hospital, many bringing their pets along with them and expecting the animals to be rescued even before patients. Prominent among the medical staff were Dr Anna Pou and nurses Cheri Landry and Lori Budo, later to be charged with second-degree murder for intentionally killing four of the patients at Memorial Hospital.
When the floods receded, 45 bodies were found at Memorial Hospital, more than in any other rest home or hospital in the city. Nine patients, all in the Life Care unit and seriously ill, had died under suspicious circumstances. All nine had unusual amounts of morphine in their systems, some in combination with sedative drugs.
The book makes gripping reading. The author's detailed research is evident and the reader is drawn into the moral dilemmas which had beset those doctors and nurses charged with the care of these patients. It poses the questions:
• If you were caring for seriously ill patients without any of the normal backup systems a hospital offers and knowing that some authority had decreed that the most debilitated patients were to be evacuated last, if at all, what would you do?
• Is it ever permissible to administer to such patients a drug which may cause their death but would prevent their dying in agony and distress because of the lack of life support or other fundamental medical resources?
• Who was responsible for altering the triage priority for evacuation from sickest first (which is normal practice) to sickest last?
As the story moves into the post-Katrina phase of investigation, arrests, media exposure, accusations and legal proceedings, we are given a fascinating picture of the background agendas behind the moves against the three medics and the ever-intriguing play of American politics.
This is a book which will challenge those who think that euthanasia is only a black and white issue. Many of the leading characters implicated in the administration of allegedly lethal doses of morphine are Catholics working out of a moral tradition that holds to the maxim always to cure, not kill. At the same time, by highlighting the influence of systemic failure, the book also carries a warning to those in authority who fail to learn from history and are therefore doomed to repeat it. I strongly recommend it.
Kilian de Lacy is a writer and a nurse (now retired) who specialised in the care of the elderly and the dying. She continues to work with the elderly and other vulnerable individuals through her involvement in Grey Power and Agape Budgeting Services. She is an active member of Holy Family Parish, Porirua.
Death as a Penalty: A Moral, Practical, and Theological Discussion
Pope Francis has recently called for the abolition of the death penalty, as well as life imprisonment which he has described as a hidden death sentence. The following article provides a discussion of some of the theological issues that have led to a shift in Catholic thinking about capital punishment.
Peter Hung Tran
‘Capital punishment’ or ‘the death penalty’ is a subject of much controversy in modern times. The authority of the State to administer a death penalty for horrendous crimes against the common good of persons and society has traditionally enjoyed support from biblical and theological resources in the Christian community. Such support is not without criticism, and contemporary ecclesial reflection on this question raises important moral issues. This paper critically examines the justifications for the death penalty and the arguments against its endorsement. These arguments are looked at in the light of biblical perspectives and from the teaching of the Catholic Church.
Some people advocate for capital punishment because it helps protect the innocent from criminals while others believe it can reduce crime rates1 by deterring criminals from acting unlawfully. However, most people disapprove of capital punishment2, seeing it as just another form of murder and a moral disgrace.3
Those who believe capital punishment to be an efficient way of discouraging murder often point to the old Bible teaching: "it shall be life for a life, eye for an eye, tooth for a tooth." (Deut 19:21). Within that framework, the argument for capital punishment can be formulated thus: some acts are so evil and so destructive of community that they invalidate the right of the perpetrator to membership and even to life. This is what St. Thomas Aquinas argued. He contended that it is legitimate to kill dangerous criminals as a way of upholding the common good.4
The Christian theological tradition has likewise supported the administration of the capital punishment in the form of the following arguments:
1. The authoritative power of the state is affirmed in the New Testament (Rm. 13:1-4),5 and the state is empowered to act on behalf of the common good of the society. When the common good is threatened, particularly when human life is directly assaulted, the state must take appropriate measures to defend the lives of innocent citizens. Such protection may require the execution of the lawless.
2. Capital punishment serves as a deterrent and contributes to the preservation of public order.
3. Capital punishment is an exercise in judgment and not hatred. To quote Pope Innocent III: "We assert, concerning the power of the State, that it is able to exercise a judgment of blood, without mortal sin, provided it proceed to inflict the punishment not in hate, but in judgment; not incautiously, but after consideration" (Anti-Waldensian Profession, DS, no. 795).
Perhaps the most compelling argument against capital punishment can be made on the basis of society’s ability to administer it: There is always a possibility of error; an innocent person could be put to death; capital punishment is also demonstrably unfairly administered; statistics show that it is inflicted disproportionately on the poor and minorities.6 The claim that the threat of capital punishment reduces violent crime is also found to be inconclusive. 7 Meanwhile, others believe that it is unfair to hold criminals fully accountable for their wrongdoing; persons who commit crimes have often suffered from neglect, emotional trauma, violence, cruelty, abandonment, lack of love, and a host of destructive social conditions.
More recently, there seems to be a growing tendency in both church and society to restrict the use of death penalty to very limited circumstances or even to abolish it completely. 8 In his homily in St. Louis of Jan. 27, 1999, Pope John Paul II said,
"A sign of hope is the increasing recognition that the dignity of human life must never be taken away, even in the case of someone who has done great evil. Modern society has the means of protecting itself without definitively denying criminals the chance to reform. I renew the appeal for a consensus to end the death penalty, which is both cruel and unnecessary."9
In a similar vein, Pope Francis in his recent speech to the representatives of the International Association of Penal Law, on 23 October 2014, also called for the abolition of the death penalty:
“It is impossible to imagine that states today cannot make use of another means than capital punishment to defend peoples' lives from an unjust aggressor.”
He reiterated the primacy of the life and dignity of the human person, reaffirming the absolute condemnation of the death penalty, the use of which is rejected by Christians.10
Although he noted, “According to the Catechism of the Catholic Church, the traditional teaching of the church does not exclude recourse to the death penalty, if this is the only possible way of effectively defending human lives against the unjust aggressor, but modern advances in protecting society from dangerous criminals mean that cases in which the execution of the offender is an absolute necessity are very rare, if not practically nonexistent”.11
In line with this, certain contemporary theologians have argued for the elimination of the death penalty for the following reasons:
1. The death penalty is useless and unnecessary. The incidence of violent crime does not appear to be appreciably lessened by the retention of capital punishment. An alternative is to deter the offender by means of lengthy imprisonment.
2. The death penalty dehumanises society by legitimating violence as a strategy to deal with human wrongdoing. The current climate of violence reflects a genuine lack of social justice and solidarity, which remains unaddressed by recourse to capital punishment as a means to deter crime.
3. The death penalty does not reflect the consistent biblical trajectory of forgiveness, hope, and redemption. In the Sermon on the Mount Jesus instructs his disciples to seek no revenge for wrongdoing. 12
A Biblical Perspective
Supporters of the death penalty frequently cite the Old Testament to justify their position.13 In Genesis 9:6 we read: "If anyone sheds the blood of man, by man shall his blood be shed; for in the image of God has man been made." Any person who murders another is to be killed. The blood of the victim murdered defiles the land. The only way it is cleansed is by administering capital punishment to the murderer (Num. 35:33-34). Then, when God gave the law to Moses, additional offences were considered capital crimes.14
At the same time, Mosaic law and the later rabbinical tradition established a strict set of judicial procedures for cases involving the death penalty. The standard of proof required to convict someone in such cases went beyond our standard of "beyond reasonable doubt" and required what amounted to absolute certainty. A conviction required at least two eye witnesses (Numbers 35:30) before someone accused of murder could be put to death, and witnesses who lied subjected themselves to the same penalty as the accused (e.g. Deut. 17 and 19). In practice Hebrew law became more restrictive which meant fewer people were convicted. More restrictions were added later so that by the second century the death penalty was rarely carried out.15
In the New Testament, Jesus' answer to capital punishment was to undermine the penalty by demanding that both judges and executioners be sinless. "Let anyone among you who is without sin be the first to throw a stone at her." He reminds his listeners to be careful of condemning others because God's judgments do not necessarily coincide with our own (e.g. Matthew 25, Luke 6). If our judgments are so fallible, how can we make the decision to take a life? In addition, Jesus' pardoning of the woman caught in adultery (a civil offence requiring capital punishment) is an example of his mercy. In this way Jesus challenges the presumption that humans can ever authorize the death penalty as judge and /or executioner. 16
In addition, the New Testament emphasises that the sacrificial aspect of taking a life was fulfilled "once and for all" by the sacrifice of Christ.17 Christ's death on the cross, itself an application of capital punishment, wiped away the Old Testament ceremonial and moral basis for the death penalty (e.g. Hebrews 10).18 No more blood needs to be shed to testify to the sacredness of life. Christ has died so that others may live.
Jesus also constantly reiterated our responsibility to see Christ in our needy neighbor, even in our enemies; we are told to love and forgive those who harm us. When Christ was executed, he gave a model response to his enemies in his dying words: "Father, forgive them." By doing that Jesus replaces the law of retribution with the law of reconciliation (Mt 5:23-4). He also teaches that we are to love those who harm us, “I say to you, love your enemies and pray for those who persecute you, so that you may be children of your Father in heaven" (Matthew 5:43-45).
Reflection and Conclusion
The biblical perspective on the death penalty is of relevance to our society and raises a series of critical questions: If the death penalty does not actually further the effort to maintain order, if indeed it may actually interfere with good order, is the State using its authority appropriately? When the State punishes arbitrarily and discriminatorily, especially with a penalty so final, is it properly carrying out its God-given role?
Jesus teaches that life belongs to God and is not ours to take. We should repudiate capital punishment because it is incompatible with the basic focus of the Gospel - reconciliation and redemption. Christ's concern is redemptive, and he has provided us a model by giving himself for his enemies. We must give the opportunity for redemption to every sinner, without exception, even for a murderer who failed to do that for his or her victim. Jesus did not die only for certain sinners, he died for all. To either deprive a person of the possibility of reconciling themselves to God and humanity or to end the life of someone who has reconciled is the real tragedy of capital punishment.
Finally, debates about the death penalty all too easily sidetrack us from deeper issues: the causes of violence and its meaning for both victim and offender. Before we can find answers to these, we need to reach within ourselves. We must realise that each of us has suffered, that we are all in some sense victims. But we also need to identify the roots of violence and injustice that are in us all. We need to acknowledge our own complicity and failure, that we have all sinned and fallen short of what we could and should be. So, we are all offenders and we are all victims; we all need redemption. It is only in realising this that we can build a future where violence will be unnecessary.
“Is the human family made more complete, is human personhood made more loving, in a society which demands life for life, eye for eye, tooth for tooth?” (Cardinal Joseph Bernardin).
Rev Dr Peter Hung Tran STD, is a Catholic Moral Theologian and Bioethicist. He works at the L.J. Goody Bioethics Centre in Western Australia and is a sessional lecturer at the University of Notre Dame, Australia and Good Shepherd College, New Zealand.
1. See R. Michael Dunnigan, JD, JCL., “The Purposes of Punishment.” Source:http://www.catholicculture.org/culture/library/view.cfm?recnum=7453 (accessed 06.10.2012).
2. The death penalty is outlawed in most of Europe, Canada, Australia, and most other countries in the world; more than 135 nations have abolished capital punishment. “The death penalty: A flawed system we can't afford to keep.” Published By Times Herald. Posted: 07 Oct, 2012. Source: http://www.timesheraldonline.com/opinion/ci_21719050/death-penalty-flawed-system-we-cant-afford-keep (accessed 08.10.2012).
3. See “A Good Friday Appeal to End the Death Penalty.” By the United States Conference of Catholic Bishops, April 2, 1999. Source: http://old.usccb.org/sdwp/national/criminal/appeal.shtml (accessed 07.10.2012).
4. Thomas Aquinas, Summa theologiae II-II, q. 64, a.2.
5. While some argue that St. Paul affirms the right of governing authorities to punish offenders (see John Berkman and Stanley Hauerwas, "Capital Punishment," in Paul Barry Clarke and Linzey (eds.) Dictionary of Ethics, Theology and Society. (New York: Routledge: 1996), 102), this view has been rejected by Jean Lasserre: "No Christian justification of the death penalty can be deduced from Roman 13, so there is no single text in the New Testament which approves it." Cited by Peter Black, "Do Circumstances Ever Justify Capital Punishment?" Theological Studies 60(1999), 342-3.
6. John Langan "Capital Punishment,"Theological Studies, 54(1993),114.
7. See Jewish-Catholic Consultation, "To End the Death Penalty," Origin 29 (1999), 463; and also John Berkman and Stanley Hauerwas, "Capital Punishment," in Paul Barry Clarke and Linzey (eds.) Dictionary of Ethics, Theology and Society. (New York: Routledge: 1996),p.103.
8. John Paul II, Evangelium vitae, nos. 53-57; John Paul II's homily Jan. 27, 1999, in St. Louis, MO; U.S. Catholic Conference, "Statement on Capital Punishment," Origins 10 (1980), 373-77; The "Good Friday Appeal to End the Death Penalty" issued by the Administrative Board of the U.S. Catholic Conference on April 2, 1999; Catholic Bishops' Conference of the Philippines, "Restoring the Death Penalty: A Backward Step," Catholic International 3 (1992), 886-888; John Langan, "Capital Punishment," Theological Studies 54 (1993), 111-24; Significantly was the joined statement between Jewish-Catholic Consultation, "To End the Death Penalty," Origin 29 (1999), 463-4.
9. Jewish-Catholic Consultation, "To End the Death Penalty," Origin 29 (1999), 463.
10. See Pope Francis calls for abolishing death penalty and life imprisonment. By Francis X. Rocca, Catholic News Service. Published on 23 October 2014 . http://www.catholicnews.com/data/stories/cns/1404377.htm (accessed 28 Oct. 2014) and also Pope to Association of Penal Law: Corruption is Greater Evil than Sin. By Vatican News - 23 October 2014. http://www.news.va/en/news/pope-to-association-of-penal-law-corruption-is-gre (accessed 28 October 2014).
12. John Berkman and Stanley Hauerwas, "Capital Punishment," in Paul Barry Clarke and Linzey (eds.) Dictionary of Ethics, Theology and Society. (New York: Routledge: 1996), pp.100-105.
13. Yet it is important to keep in mind that the New Testament must be the primary standard for Christians.
14. In the Law of Moses fifteen different crimes were singled out for the death penalty including hitting your parents (Ex. 21:15); Kidnapping (Ex. 21:16); Killing an unborn infant (Ex 21:22-25); Adultery (Lev. 20:10); Incest (Lev. 20:11-12 & 14); Rape under some circumstances (Deut. 22:25). It should be noted that from Noah until the institution of the Law, the Bible only sanctioned capital punishment for murder. See John Berkman and Stanley Hauerwas, "Capital Punishment," in Paul Barry Clarke and Linzey (eds.) Dictionary of Ethics, Theology and Society. (New York: Routledge: 1996), 102.
15. Jeremiah J. McCarthy, "Capital Punishment," in Judith A. Dwyer, (ed.) The New Dictionary of Catholic Social Thought. (Collegeville, Minnesota: The Liturgical Press, 1994), 109-111, at 109
16. God alone is the author of life, therefore only God has the dominion of life, says the National Jewish-Catholic Consultation in a Dec. 6, 1999, report - Origins 29 (1999), 463; Similarly, John Berkman and Stanley Hauerwas, in the same way, would claim it also, "all life, guilty or not, belongs to God and is to be given and taken only by God." (p. 104)
17. John Berkman and Stanley Hauerwas, Ibid.
18. John Berkman and Stanley Hauerwas, "Capital Punishment," in Paul Barry Clarke and Linzey (eds.) Dictionary of Ethics, Theology and Society. (New York: Routledge: 1996), p.102.
Catholic Health Australia releases new Advance Care Plan
The previous issue of The Nathaniel Report, number 42, included The Nathaniel Centre’s submission to the National Ethics Advisory Committee on the ethical challenges in advance care planning. In that submission we emphasised the need for a ‘process’ that emphasised the ongoing nature of end-of-life planning rather than a narrower approach that focussed largely on the completion of a written ‘plan’. We also highlighted the importance of people reflecting on decisions about care and treatment at the end of life before they become chronically ill.
Some may imagine that the important decisions about end of life treatment are largely ‘technical’ ones requiring the specialist knowledge and advice of the medical profession. However, while the input of health practitioners provides a necessary and invaluable contribution, there are also issues of a spiritual, relational, social, cultural, emotional and psychological nature that are part of end-of-life planning. In particular, it is advisable to include those people who will be most deeply affected and who are likely to know us best – our family, whanau and aiga as well as significant friends.
The process of advance care planning can also be a good time to think about our willingness to become an organ donor.
In response torequests about advance care planning, Catholic Health Australiahas recently released two guides; one for people considering their future health care needs, and another for health care professionals. The guides are described as being consistent with Catholic principles as well as with good secular ethics. The documents have been approved by the Committee for Doctrine and Morals of the Australian Catholic Bishops' Conference.
The guide for people considering their future health care provides advice on a range of end-of-life issues. Because illness, disease and other life events are unpredictable, the document stipulates that it is best to provide general guidance about future medical treatment rather than specific directives. It also promotes the idea that the ‘planning’ take the form of an on-going conversation with family, friends and health care professionals.
The material features a discussion about choosing a representative in the event a person becomes unable to make decisions for themselves, as well as ideas for how to go about advising that person. The document underscores the responsibility we all have to protect and sustain life and details when treatment might be refused. It provides a good concise summary of the ethics concerning treatment which is futile and ‘overly burdensome’, what the Catholic tradition often refers to as ‘extraordinary’ or ‘disproportionate’. Treatments are burdensome when they cause distress and suffering for a person, cause difficulties for the person or their family (or the community) or are costly to obtain or provide. Persons are encouraged to clarify the burdens they would find acceptable.
Critically, the document notes that in light of the continuing debates over euthanasia and the withdrawal of medical treatment, it is important for a person to state explicitly that they do want life-sustaining treatment that is reasonable to be provided unless it becomes futile or is overly burdensome. The provision of food and water is part of the normal obligation to care for a person, even when a tube is required, so long as the food nourishes and /or alleviates suffering. The risk of choking, the failure to digest food, or the discomfort of a tube are all reasons which may make the use of tube feeding overly burdensome.
Finally the document provides ‘a model statement for future health care’, which can be used as it is or to begin a discussion about end-of-life planning with a person’s designated representative/s.
The document has been designed in a way that makes it easy to follow and it is appropriate for persons receiving care in any facility. While written with a Catholic audience in mind, it is equally suitable for persons of all faiths or none.
There is also a New Zealand website that provides advice and suggestions for starting up conversations about advance care planning: http://www.advancecareplanning.org.nz/
The New Zealand Advance Care Planning Guide, as well as providing guidance for planning advance care, provides information about your rights as a patient and the legal issues as they exist in New Zealand. http://www.advancecareplanning.org.nz/assets/Advance_care_planning_guide.pdf
Bringing Dementia Patients to Life
An insightful article on dementia written by Richard Gunderman: "a dementia diagnosis is not the medical equivalent of falling off a cliff" because there are many things that can be done to bring life to persons with dementia.
Kate’s Story: “The person inside the person with dementia”
Wednesday 15 January was an ordinary, sunny day at Cornwall Park Hospital. The residents were waking up to eat their breakfast for the day. Bur for one of our residents, this day would be unlike any other for quite some time.
When Jenny Smith (not her real name) woke this particular morning, she would be free from her crippling and cruel dementia. The staff were aware of the change from the very first moment they entered the room. Her usual furrowed brow was no longer so; in fact her features were very different; soft and loving. Her usual colourful language was replaced with words of kindness and joy. The staff bought her out into the dining room and for the first time in over a year she sat upright at the table and used a knife and fork to enjoy her breakfast.
This lady and I have an incredibly deep bond. I had been working here just a few days when she learnt that if she shouted my name I'd be straight there to give her anything she wanted, and so she did repeatedly 'Kate, Kate' morning noon and night. As the time went on I'd spend my working days with Jenny right by my side. I'd live for those moments when she'd briefly surface and I would get a hug or a kiss but those moments were few and far between. Jenny has a unique way of speaking, she comes up with the most imaginative and funny insults and phrases, just one of the reasons that I had come to love her so dearly. That being said, her high level of dementia makes her very troubled and highly distressed.
So when I walked into work that morning several staff approached me to tell me of the wonderful news. As I walked into the lounge there sat my companion with the sunniest of dispositions chatting with the nurse. As she looked over at me we both started to cry. She looked just like the lady in the pictures I'd seen of her before entering the hospital, she looked 10 years younger. She threw her arms out to me and we embraced like old friends who had been apart for too long. She put her hands around my face and studied it a while before saying 'take me to the garden there is much to discuss'.
I took her out into the sunshine and we sat by the rabbit cage as we so often did. Two of the other staff accompanied us as none of us wanted to miss a moment spent with the real Jenny. She discussed personal matters of importance such as which charities she'd like to donate her jewellery to and the health of family members. She could remember things I'd told her in detail such as my boyfriend's name and his profession. I was so overwhelmed at her memory and conversational skills; sometimes you wonder if the person inside the person with dementia is taking in what you are saying. It would appear from Jenny's awakening that they absolutely are. She took my hand and said to me; 'sometimes I'm so very cruel to all of you but none of you ever turn your back on me, from now on when I say the 'f' word I want you to imagine that I'm telling you how much I appreciate all of you.' I was sobbing almost uncontrollably at this point, I wanted to tell her how much she meant to me but the words wouldn't come out through the tears. She took the tissue out of my hand and dried my eyes and said; 'I have a lot of love for you Kate, I want you to always remember that'. At this point the other staff had gone back inside and we were alone, she lowered her voice and said to me; 'please answer this honestly Kate, I know you won't lie to me,' I nodded. 'Will the dementia return?' Sadly I nodded my head again, 'then how long do we have together?' I told her that I did not know, it could be a few minutes, maybe a few hours but we would cherish every second we had together. At this point she cried and told me that she badly wanted to stay. I told her I'd spend all of my prayers and wishes trying to make it so.
That afternoon Jenny's son and I took her out of the hospital. We drove her to the beach and she told me stories of when she lived there. We took her to church and she was overjoyed that all the features were just as she remembered them. After that we had afternoon tea and some of her family and friends came to visit with their children which Jenny was so pleased about. However, we could see that she was getting tired and were aware that we could lose her at any moment.
We got back in the car and I sat in the middle with my arm around her and she lay back against me. She kissed my hand and held it tight as we passed the beach where she had grown up. She said she'd never seen anything so beautiful and softly fell asleep. I held her tight to make sure she felt loved and safe.
She woke around 15 minutes later and bit into my arm with ferocious anger. We were all too aware that the dementia had returned. Her screams were louder than ever as we took her back into the hospital.
To this day, she has never resurfaced. She won't hug me and is repulsed when I kiss her cheek. No matter what happens, I'll always remember that a miracle happened at Cornwall Park hospital on Wednesday 15th January and I know that deep down in that person with dementia is a vibrant, intelligent and loving woman trying her best to tell me that I'm appreciated. And my goodness do I love that woman.
Kate Burnett is the Activity Officer at Cornwall Park Hospital, Epsom, Auckland.
This article first appeared in Dementia Care Briefing for Bupa NZ employees, Issue 14, March 2014 and is reproduced with the kind permission of the author and the resident's family.
Child Poverty and Euthanasia: joining the dots
Sue Buckley and John Kleinsman
Child poverty and euthanasia are potentially risky topics for politicians in any year, but especially in an election year. The decision late last year to remove the End of Life Choice Bill from the private members ballot lest it become a political football is a demonstration of this caution. Is there a connection between these two contentious topics? The naming of the End of Life Choice Bill points to a possible link between the two, that of 'choice'.
Over recent decades the notion of 'choice' has been widely adopted in economic and social policy discussions, with human actors now widely viewed as autonomous individuals who have a fundamental right to make decisions on the basis of their own interests, whether in health, education, career, or lifestyle. Lifestyle decisions, such as what they spend their money on or how they spend their time or the sort of job they do, are seen as choices freely taken from a smorgasbord of options.
We have also come to view people's particular social and personal situations, including their unemployment and health status, more and more as the product of their prior choices. Without question, many people who are the recipients of a State sponsored benefit receive it because of circumstances beyond their control. Even when it seems that a person's situation may be the result of so-called 'bad choices', it remains the case that their personal choices cannot always be separated from the limitations imposed on their personal freedom by structural constraints beyond their control that define their particular societal and familial context.
As United States academics Kelly Brownell et al note, reflecting on whether we should pursue punishment strategies as a way of dealing with people who are obese: "environmental conditions can override individual physical and psychological regulatory systems that might otherwise stand in the way of weight gain and obesity, hence undermining personal responsibility, narrowing choices, and eroding personal freedoms."1
Despite this fact, the overly simplistic view that people are essentially 'responsible' for the situation they find themselves in continues to shape the development of social benefit policies in many countries, including New Zealand. Thus, for example, where once it was held that benefits for sole or unemployed parents should be set at a level that would enable recipients and their children to participate in society like everyone else, now parents are exhorted to 'work their way' out of poverty. Consequently, those who are not able to achieve this become prone to seeing themselves, and to being seen, either as 'outsiders' or, at best, as 'unworthy' members of society.
In line with this, the notion of citizenship has also shifted over time, with a greater emphasis now on 'active citizenship' rather than 'passive citizenship'. While passive citizenship focuses on the rights that are inherent in being a citizen and belonging to a particular society, active citizenship focuses on responsibilities and obligations as the 'price' for belonging. In an article discussing the relationship between child poverty, child rights and active citizenship, O'Brien and Salonen2 use the following definition of 'active citizenship': "A new ideal of citizenship or a new set of rights and duties based on a conception of a claimant (eg an unemployed person) as an active citizen. The active citizen is granted more autonomy and choice but in return is assumed to be self-responsible, flexible and mobile". It is implied here that the passive citizen should not expect to have the same rights or receive the same rewards. The subtle but powerful message is that those who, for a variety of reasons, do not work are 'second-rate' citizens because they 'reap the bounty of others' hard work'.
There are, of course, positive aspects to both views of citizenship; the concept of the 'passive citizen' is in the first instance associated with rights to food, shelter, work, free speech and so on, that are part of the inherent dignity of being human. Meanwhile the concept of 'active citizenship' is associated, in the first instance, with the relational responsibilities all human beings have towards each other, including the duties associated with contributing to the functioning of society and to one's own and one's family's wellbeing. However, an overly narrow focus on 'active citizenship' carries the risk of overlooking or disregarding those citizens who are, for any number of reasons, unable to be 'active'.
O'Brien and Salonen argue that changes in welfare policies over the last two decades in New Zealand have increasingly been based on the notion of 'active citizenship'. The setting of benefit levels and provision of tax relief for families have been intentionally designed to ensure that there is a clear economic advantage in working rather than living on a benefit. While this helps support 'working families', as noted above, it is also intended to encourage citizens to 'choose' work over unemployment. However, one of the unintended consequences of this policy shift is that those who are most vulnerable, children, the sick, the elderly and those with disabilities, who are not able to make such choices, are not just overlooked but become casualties of policies designed to reward and sustain the 'active'.
As O'Brien and Salonen note, the children of beneficiaries do not have a choice about whether their parents are in work or not and, if benefit levels are insufficient, then the children have poverty thrust upon them along with its associated effects on their long-term health and education. All of which means that a policy choice that favours rewarding parents in paid work can only be justified by a calculation that the gains which follow from providing an incentive to work outweigh the needs of the children of beneficiaries. This is clearly a utilitarian argument. Specifically, it neglects the real and immediate needs of many children who are presently living in poverty. It also fails to address the 'unpaid work' of nurturing involved in parenting,
Defining people as 'active' or 'passive' citizens and rewarding the economically active places children, the elderly and the disabled in the precarious position of having to claim rights as 'passive citizens'. In addition an overly narrow focus on the 'active citizen' means that 'passive citizens' become increasingly exposed to social censure. There is ample evidence in the derogatory connotations associated with welfare dependency that 'non-active' citizens are not only held in disrepute by others, but that they soon come to regard their own plight negatively. Consequently, there is little difference between being a 'non-active citizen' and becoming a 'burden on society'.
The use of political rhetoric that divides citizens into the 'deserving and underserving' makes this clear: 'strivers and skivers' (United Kingdom), and 'lifters not leaners' (Australia). Language such as this doesn't just alienate the unemployed, sole parents and other beneficiaries; it alienates all of us because we begin to view these groups of individuals as 'other'.
The focus on 'choice' and citizenship provides a useful lens for making sense of the controversial debate about choices at the end of life. In a society that accepts and emphasises the right and duty of people to make their own individual choices and the importance of taking responsibility for their personal situation, it naturally follows that the fundamental right, and possibly the duty, of the active citizen to choose how they live, should extend to choices about death.
However, the elevation of the 'active citizen' that informs recent welfare policies also risks creating classes of vulnerable citizens who are viewed, and view themselves, as a burden on society. Those particularly susceptible to this are the sick, the elderly and those with disabilities. Being seen as a 'burden' on the rest of society exposes these citizens to the same sort of criticism as beneficiaries and the corresponding weight of guilt that they are 'swallowing up resources'.
A widespread emphasis on individual autonomy and a social policy environment that defends and promotes the right to choose, with little regard to the limits of people's choices, can too easily obscure the negative impact of law changes that are justified on the basis of so-called choice, both on individuals as well as society at large. One outcome of this is that those of us who, through fortune or 'God-given' ability find ourselves healthy and well-off, can easily 'blame' others for their situation, blind to the deeper structural dynamics that inevitably shape and limit the choices people make; we can back away from child poverty and even tolerate it because their parents made bad choices; we can support and even champion the choice for euthanasia or assisted suicide while overlooking the social environment where those 'choosing' to die have come to see themselves as passive citizens, that is, as unworthy consumers of valuable and increasingly scarce resources – as 'lives unworthy of life'.
Supporting policies that allow for 'choice' might appear benign, but in an environment where some classes of citizens are at risk of being viewed and viewing themselves as unworthy or undeserving, providing 'choice' can be a negative and threatening experience. Just as the child of a beneficiary does not choose poverty, so those who see themselves, or are seen by others, as 'swallowing up resources', may find they have no real 'end of life choice' should our society make euthanasia and assisted suicide legal and acceptable options.
Sue Buckley is a researcher for The Nathaniel Centre and John Kleinsman is director of The Nathaniel Centre
1. Brownell, K. D., Kersh, R., Ludwig, D. S., Post, R. C., Puhl, R. M., Schwartz, M. B., et al. Personal Responsibility And Obesity: A Constructive Approach To A Controversial Issue. Health Affairs, 29(3), 379-387
2. O'Brien, M., & Salonen, T. Child poverty and child rights meet active citizenship: A New Zealand and Sweden case study. Childhood, 18(2), 211-226.
Launch of Care Alliance: A coalition to oppose euthanasia and assisted suicide
A coalition, assembled to oppose the legalisation of euthanasia and assisted-suicide in New Zealand, has been formally launched at a function at Parliament on the 20th of March.
The Care Alliance is an umbrella organisation that brings together a wide range of voices from across the palliative, medical, youth, elderly, disability, bioethics and faith sectors who are opposed to euthanasia. It was first established in 2012 in opposition to the poorly written, confusing and flawed End of Life Choice Bill proposed by a Labour List MP which has since been withdrawn following political pressure.
“As long as there is a political intent to legalise euthanasia in New Zealand, we need to be vigilant. The Care Alliance will oppose any efforts to legalise euthanasia or assisted-suicide," said Care Alliance co-founder Maggie Barry. “Although the latest Bill has been withdrawn for political reasons, there remains an active intent to re-submit it to the Ballot at the earliest possible convenience. We will continue to oppose any progress to legalise euthanasia because a law change will inevitably have unintended consequences for all vulnerable New Zealanders and their families, it puts lives at risk and reduces choice,” said Ms Barry.
"Our key concern is the long-term consequences for public safety. This is not an issue for just a few. Regardless of personal beliefs, all New Zealanders would be affected by the public safety consequences of legalising euthanasia and assisted suicide," said Dr Sinéad Donnelly, a palliative care physician. "Legalising euthanasia goes against the core values of the medical profession and will radically change the doctor-patient relationship, ultimately undermining good clinical and palliative care. It will devalue the lives of the elderly and people living with disabilities, and increase the risk of abuse among the most vulnerable New Zealanders,” said Dr Donnelly.
"No legislation can protect against abuse. The best safeguard against abuse is prohibition,” said bioethicist Dr John Kleinsman.
"Over the coming months, we will continue to have conversations with New Zealanders about their concerns around euthanasia and assisted suicide. The Care Alliance supports increased investment in excellent end of life care and support for those who are dying and for their families. We will work to oppose any law changes that hurt, rather than protect, those New Zealanders who are our most vulnerable”.
For more information visit: http://www.carealliance.org.nz/
It’s out with the old as Christian values fall away
John Dickson reflects on our attitudes towards the aged, and suggests that the rise of Christianity provided a philosophical framework and justification for treating all persons as 'inestimably precious'. He notes the demographic changes that have led to an ageing population and wonders what the accompanying decline in belief might mean in terms of care for the elderly.
This article is available online here: https://publicchristianity.org/library/its-out-with-the-old-as-christian-values-fall-away
Suicides in Japan and God’s gentleness
The struggle caused by the premature death of a person through suicide is addressed in a sobering piece of writing by Columban missionary Barry Cairns. "Itsukushimi" is a word in Japanese which is a combination of gentleness, understanding, love, mercy, compassion, warmth and the wonderful ability to feel with a person.
Making a difference in aged care: a geriatrician speaks
Dr Janet Turnbull was recently interviewed by Michael McCabe and John Kleinsman. In this article she shares her personal insights on the challenges of caring for the elderly as well as the challenges faced by the elderly.
It is clear that many people are living longer. When I first started out in this field we mostly dealt with the 70 and 80 year olds. The 90 year olds were rare. Now I often work with people in their 90’s. We are dealing with a much older group of people, they are frail, and often have multiple problems which cause a significant disability but we can help them keep going for a long time, often years.
The elderly don’t live in the community in the way they used to. Older people may have for generations moved from their home to another place. They used to move in with a younger relative or live in a ‘granny flat’. That does still happen, particularly in the Pacifica cultures. Some of those families are just brilliant; they can give better care than almost anybody because they have big families and they often do it in relatively frugal circumstances, (I am generalising here but that is my personal experience from home visiting). Increasingly today, many families may find themselves reaching their limit because a lot of the younger generation are now working or studying. They have invested in education and then get jobs that they cannot just drop and pick up again, or if they do they have to put their careers on hold.
Sometimes we do a home visit and note that, while the patient is being looked after, the care is not being done in the way we would do it. We sometimes feel like we are walking a tight line. However, if the patient seems to accept it, and the family is comfortable with the care, we provide more visits or get more respite – it is a matter of balancing things out.
I think a lot of societal forces now are encouraging the elderly to downsize their houses and to move to another place where there is a lot more social activity. The policy of ‘ageing in place’ can mean that elderly people can become socially isolated as they gradually become more disabled, particularly if they do not drive. The move to develop retirement villages is a relatively new concept from the last twenty years; people move into a villa with a view to then moving on into an apartment and eventually into a rest home – you have to have some money to do that, also a degree of financial nous.
Older people’s attitudes
Some older people are very conscious of the fact that they may be a ‘burden’, which is what they don’t want. Physical disability often requires help. There is a real reluctance amongst the older people I work with to ask for help because they are generally very independent minded. Many of them were young people in the depression so they know about deprivation. They have also lived through and survived the Second World War. I think it is a genuine feeling of not wanting to put pressure on people. They are generally a more self-effacing generation, although there is very often a mixture of pride in their stance.
It is also, at least partly, a knee-jerk reaction to the loss of their independence; if you see that your physical needs put pressure on other people it makes you realise that you are not independent. A lot of people are aware of the stresses that their families are under these days. So it is about concern for their families as well.
Euthanasia is an issue people come up with and talk about a bit because they feel they are a burden on their families. But they don’t talk so much about being a burden on the State.
As people live longer, the number of older people with dementia will increase. This is a big issue. The big ‘problem’ 30 or 40 years ago was heart disease. We deal with that much better now through diet and managing blood pressure. But people who survive heart disease in their 60’s have an increased chance of developing vascular dementia because of their vascular risk factors.
Dementia is a cruel illness because it involves the actual disintegration of a personality and there is not a lot that can be done with medication. It is critically important to support the person and their family so that they understand what is happening – that is where we can make a real difference to quality of life.
We see many instances of a spouse looking after someone with dementia. The ‘well’ spouse will often try to cover up and compensate for the spouse with dementia. It can often appear to health professionals that some people have become unwell very suddenly, but when we look more closely we discover that they have been unwell and cognitively impaired for a long time. They come to our attention because the partner or spouse caring for them has suddenly died.
With the right kind of support, many people with dementia can remain out of institutional care for a good part of their illness . We need to develop the kind of understanding towards dementia that we have for people with heart failure or cancer. They can manage their own money with some assistance, and some manage to live at home for many years. Some of them still drive their cars at the start of their illness. It is a matter of getting more information to the public so that people can understand dementia. The community need is for education.
Societal attitudes to the elderly
We hear a lot about the onrush of the grey tide, a tsunami which these days is associated with horrifying imagery. It is generally described as a financial problem because the changing situation is mostly analysed from an economic or monetary perspective – as if people are to be valued by how much money they earn or how much tax they pay or the businesses they had.
We talk about all older people as if they are a threat to us. I don’t see the fact that we are ageing as a big problem because we could choose to see elderly people as a resource. The unpaid or non-monetised functions of old age don’t always get raised in the media. We could see people as useful in themselves. Experience is also valuable. The elderly are too easily judged as a potential financial risk on the health system and the fact that most of a person’s health care resources are spent in the last year of their life is sometimes mentioned in a pejorative sense. I ask: Why not spend money when it’s needed?
Even if we take an economic perspective, it should be remembered that people are still a resource because many can and still work into their 60’s and 70’s. They can still contribute financially (if that is how we judge people), they can still support people. Consider the volunteer base and the number of grandparents looking after grandchildren. We can still be an important part of society when we are older. Surely we don’t need to be seen as a problem simply because we need a bit of money from the State? If we are driving a car, if we are fixing our houses, if we are looking after grandchildren, if we are doing a bit of volunteering, we may not be earning lots of money but we are still making an important contribution.
In fact, the cost to the State that people argue about is that of a certain proportion of people who actually go into care. While a lot more people are going into care, they are staying a shorter time because we are getting better at keeping people at home. When they do go into care, they often die quickly. In fact, the elderly are not demanding more and more resources as they age.
To date anyway, we are actually managing it. It is only a small proportion of the elderly who are very disabled and who require lots of resources. We need to remember that many people who own their own house and have retirement savings actually pay for their care themselves. With improvements in health care, many of us will remain healthier for longer. Yes, we will need to access health care in the last year of life but we may also have contributed another 10 to 20 years of life while doing lots of other useful things.
Provision of aged care services
The work with the elderly is largely undervalued. It is seen by many as little more than ‘wiping people’s bottoms’. I don’t think we spend huge amounts on the older adult, but if you see it as money you should be spending on other things, then you will see it as expensive. Many of the work force that I see in aged care facilities are immigrants which leads me to wonder: Do we as New Zealanders not value this type of work? Is it because some of it is poorly paid?
The bigger care facilities are striving to be professional in terms of providing education for their workers. It appears to me that some parts of the elder care industry don’t keep staff because they don’t pay them a lot. If you have a high turnover of staff, you lose experience and initiative in organisations. Being low paid, this sort of work is not seen as attractive to many people who want a career. What happens when you have a poorly paid work force? It undermines good care. Education and stability will deliver better care. Nevertheless, there are some fantastic workers who stay in the industry.
We would actually prefer to manage people at home if possible (although institutional care is very important for some). Most of home based care, in fact 90% of it, is provided by primary health care providers; the GP working with nurses, engaging with the elderly person and discussing issues with family.
There are the providers who deliver care in the home. These workers often don’t get paid appropriate wages for caring for patients with significant health problems – such as cognitive impairment and multiple medical problems – who struggle with even the basic activities of daily living. I suspect people assume that wiping bottoms is seen as something anyone can do. In fact, encouraging someone to dress themselves, take their pills, and eat their meals and be set up for the day often takes a great deal of patience and skill. Organisations often allocate an hour per visit, but we also stack up the number of people they need to see in a day. Like many parts of the health system, it is under severe strain; the fat is being squeezed.
Racial differences in health outcomes and access to care
We very rarely see Pacifica or Maori in their 90’s. It happens occasionally. While it is more common for them to live into their 80’s now, many die in their 70’s. I vividly recall Don Brash talking ten years ago about ‘a society for everybody’. If you are pakeha, you tend to have a stroke in your 70’s and die sometime after that. On the other hand, persons of Polynesian descent who are living in Porirua are having strokes in their 50’s and 60’s. How can anyone say that is equitable? How can we possibly live with a system which delivers that sort of inequitable outcome?
Part of the problem is access to health care. Often enough the health care is available, but it is not delivered in a way that allows people to easily access it. There is also a cost associated with receiving care which can also act as a barrier for some. Older adults generally do well if they can establish contact with a regular GP or health practitioner. A good general practice can provide excellent support provided people are able to access it. The issues with the really old relate to their increasing disability. The question is always: have we offered people support when they needed it and how they needed it? Do we do it in the right way? Is it culturally appropriate and safe for the patient?
When I encounter elder abuse, it is often related to the stress of caring – someone handled roughly because the carer just can’t cope any longer. It is unacceptable, but it is understandable. It happens mostly at home and with the person’s own family.
But it does happen in institutions. Sometimes it is because the wrong people have been chosen to work in that institution or because of poor management.
The instances of abuse that come out in the media are often the consequence of poor management in care facilities; less than ideal practice, not reviewing things. They are often related to a lack of knowledge, which is why facilities are now required to have strategies in place to deal with problems that arise.
It is always very difficult for families to put a family member into care. No matter how good it may be, individual care is replaced by the institution. The loss of one to one attention, which may have put the carer under a huge amount of stress, is still a change - things will never be the same.
Vision for the future
I see the Geriatrician’s role as making a difference in the lives of the elderly and their families. There is always something that can be done to make that difference even if it seems to be a small event. It’s about paying attention to people as individuals no matter how difficult that becomes.
There has been a huge explosion in the professional care industry in the last twenty years and I believe there will be yet more retirement villages being built because they represent a ‘good investment’. Back in the nineteenth century there were the poor houses and various other institutions. I sometimes wonder whether we are just revisiting institutionalism in a different way. I also wonder about how we will be able to support those who aren’t part of the upper or middle class – those people, for example, who used to live in council flats? How can we get affordable housing for these people? Do they just go into care somewhere or do we put personal health care resources into supporting them where they have always been living?
We have to work on reconnecting families. Children and grandchildren need to know that being family does not mean it is always going to be their sole responsibility to care for an elderly family member. I think people know that deep down, but all that ever seems to come out of the media is sensationalist reporting about the grey tsunami and the poor young people who are going to have to support their elders. Of course, in some ways that is true, because caring for our elders is what families have always done. But, we will be doing it in ways that are radically different, and in ways that are still to emerge. This does make it difficult for many people to understand what is going on right now.
The other important thing is the sense of history and continuity which dies with our old people if we don’t tap into it. Our society is the poorer for ignoring the stories which our elders can tell.
Something I think a lot about is that it would be nice if we took the fear out of being old and accepted it as a part of reality. It can be awful getting old. It can be really difficult getting old. But it isn’t always like that. We have to get away from all the generalisations and engage with the reality of life. We need to see old age as a possibility for growth and handing on knowledge.
Dr Janet Turnbull is a Consultant Geriatrician and a Fellow of the Royal Australasian College of Physicians. She has more recently trained as a Palliative Care Physician. She works primarily in the public health sector and for a community hospice.
A comment on the Liverpool Care Pathway
Professor David Albert Jones
The Liverpool Care Pathway for the Dying Patient (LCP) was developed in 1997 by the specialist palliative care team at the Royal Liverpool and Broadgreen University Hospital Trust together with the Marie Curie Hospice in Liverpool. The Marie Curie Palliative Care Institute Liverpool (MCPCIL) has led the dissemination of the LCP nationally and internationally as a continuous quality improvement programme to support care in the last hours or days of life. The generic core document of the LCP (MCPCIL 2009) can be found on the MCPCIL website (www.mcpcil.org.uk) along with other supporting material. The core document does not stand on its own but needs to be used within a system of training and audit. The LCP has been developed by and should be understood in relation to the Marie Curie Palliative Care Institute Liverpool and the hospice movement and palliative care profession more generally. The document should be interpreted in this context and also in the light of guidance from the General Medical Council on treatment and care towards the end of life (GMC 2010). This context is acknowledged explicitly on the MCPCIL website, for example, “the LCP prompts clinicians to consider the need for CANH [clinically assisted nutrition and hydration]. All clinical decisions must be made in the patient’s best interest and tailored to the patient’s individual needs. The GMC guidance provides specific information regarding this issue” (MCPCIL 2012).
The main principles behind the Liverpool Care Pathway are those of good palliative care and are fully in accordance with Catholic moral theology and with a Catholic understanding of a good death. Nevertheless, in practice it is clear that there is scope for patients to suffer if the LCP is misunderstood and used inappropriately, and the LCP may need to be improved in order to reduce the scope for such misunderstandings. There are a number of pressures that might subvert the proper implementation of the LCP. These might include:
- the subjective character of judgments about how soon someone is going to die, and the lack of explicit evidence-based criteria for this judgment in the case of the imminently dying;
- the fact that the LCP may be initiated by people who are not senior clinicians, or are not familiar with the individual patient’s case, or who have not consulted with palliative care physicians;
- the influence of managerial pressures to reduce bed occupancy or meet targets of one kind or another;
- reluctance to face the problems of continuing care of certain difficult patients;
- the euthanasiast outlook of some clinicians;
- the possibility of doctors or nurses regarding the LCP as a set of “tick boxes” (which is part of a larger cultural problem in the health service);
- that rather than assessing, and regularly re-assessing, the needs of the patient, fluids might be withdrawn automatically, where they could, for example, have been useful in alleviating thirst, (in some cases patients have been deprived even of sips of water or of the moistening of their dry mouth);
- Other NHS organizational/ staffing procedures or constraints that may prevent an essential step or dimension of the LCP from being properly applied.
- Lack of discussion with patients (if they are competent) and relatives or carers.
The hospice movement, which is widely admired and supported, is often successful in meeting the needs of dying people for adequate symptom relief, for human support, and for spiritual care. However, most of us in Great Britain and Ireland do not die in a hospice, nor do most of us die at home. We die in hospitals which have as their main aim to get people better, to cure, or at least improve people’s state of health. In the context of a system that focuses on cure it is difficult both for clinicians and for relatives to admit that a patient is dying and might need care appropriate to the dying. Research shows that care of the dying is poorest in the hospital setting.
The LCP may be regarded as an uneasy compromise because it seeks to deliver what would be better delivered, but cannot (within realistic resource constraints) be delivered, by universal availability of hospice care. It is for this reason that the MCPCIL website acknowledges that the LCP “is not the answer to all our needs for care of the dying but is a step in the right direction”.
The LCP is not the only approach to improving the quality of end of life care but it has been recommended by the Department of Health, the End of Life Care Programme and by the NICE Quality Standard for End of Life Care. It has also been taken up by a number of other countries (including majority-Catholic countries) and is the focus of international research and collaboration with the aim of improving standards of care.
As with palliative care more generally, the LCP when properly implemented does not aim to hasten death but aims to support doctors and nurses to give the treatment and care that is appropriate for a dying patient and to withdraw any treatments or forms of care that are futile, burdensome, or counterproductive.
The Catechism of the Catholic Church is very clear that medical treatment can sometimes be withdrawn:
“Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to their expected outcome can be legitimate: it is the refusal of ‘over-zealous’ treatment. Here one does not will to cause death; one’s inability to impede it is merely accepted. The decision should be made by the patient if he is competent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected” (paragraph 2278).
The view of the Catholic Church, as expressed by Pope John Paul II and by the Congregation for the Doctrine of the Faith, is that food and drink, even when provided by tube (CANH), should not be regarded as medical treatment but rather, as ordinary care, which is, in principle, obligatory. Nevertheless, when death is imminent, this form of care may no longer be needed. Thus Bishop Anthony Fisher OP (who delivered the Anscombe Memorial Lecture in 2012 on discrimination against older patients), states that, “it will sometimes be appropriate to withhold, reduce or withdraw assisted nutrition and hydration” (Fisher 2012, p. 232).
From a traditional Catholic perspective it is not always mandatory to institute clinically assisted hydration (CAH) in an imminently dying patient. The question, therefore, is whether a particular patient might benefit from CAH in regard to sustaining life or relief of adverse symptoms. From a traditional Hippocratic perspective it is absolutely clear that CAH should never be withheld or withdrawn in order to hasten death. On the other hand it is not clear that most patients who are entering the last phase of dying would benefit from CAH. Physicians in different countries have adopted different practices and the evidence is mixed. Within the hospice movement in the United Kingdom it is relatively rare to institute CAH. Nevertheless, good practice (as reflected in the GMC guidance and in the LCP) is not to have a blanket policy but for each patient to be regularly assessed as to how best to address nutritional and hydration needs (“You must assess their needs for nutrition and hydration separately and consider what forms of clinically assisted nutrition or hydration may be required to meet their needs” GMC 2010, paragraph 111). A good summary of the current evidence in relation to the benefits and burdens of instituting CAH at the end of life is provided in a recent paper by Anna Nowarska (2011, see also Dalal, Del Fabbro and Bruera 2009, Keeler 2010).
The Church has also made clear that pain relief and sedatives may be given where they are needed, even if this reduces lucidity and even if it were to shorten life, though the evidence is that opiates titrated for symptom relief do not shorten life (Sykes and Thorns 2003a; 2003b; Maltoni et al. 2009).
“Human and Christian prudence suggest for the majority of sick people the use of medicines capable of alleviating or suppressing pain, even though these may cause as a secondary effect semi-consciousness and reduced lucidity… [and even] if one foresees that the use of narcotics will shorten life... In this case, of course, death is in no way intended or sought, even if the risk of it is reasonably taken; the intention is simply to relieve pain effectively” (SCDF 1980).
The LCP encourages a system of anticipatory prescribing, so that pain relief is available as soon as it is needed, but both pain relief and sedatives should be given only as necessary to bring symptoms under control. In the United Kingdom and the Republic of Ireland it is not considered good practice in palliative care to aim at producing continuous deep sedation. While sedatives might sometimes be given in excess of what is needed, audit evidence shows that levels of sedation on the LCP have generally been relatively modest and there has been no evidence of continuous deep sedation (Gambles et al 2011). The contrast between the aim and typical outcome of sedative practice on the LCP, and the practice of continuous deep sedation, as used in the Netherlands as an alternative to active euthanasia, is best illustrated by a comparison of the doses used and recommended. This is helpfully set out by Dr Jeff Stephenson, a Consultant in Palliative Medicine based in the UK.
“The second national audit [of the LCP] found that drugs prescribed for agitation and restlessness were given in only 37% of cases, and the median dose of midazolam, the most frequently used drug for this indication, was 10mg/24hrs. This contrasts markedly with guidance on continuous deep sedation from the Royal Dutch Medical Association which recommends a starting dose of 1.5 – 2.5 mg per hour, with progressive escalation until unconsciousness is achieved, up to a maximum of 20mg per hour. Interestingly, the use of the LCP in the Netherlands has been reported to reduce the extent to which physicians use medication that might hasten death” (Stephenson 2012 citing NCDAH 2012 and KNMG 2009, emphasis in the original).
Thus, the LCP is an approach to improving standards of end of life care and is not either in intention or in practice, when properly implemented, a form of euthanasia. The LCP is a means to promote palliative care and research has shown that, among doctors, palliative care physicians are the least likely to hasten death and the least likely to intend to hasten death (Seale 2006, Seale 2009). According to the MCPCIL, “the LCP exists to support good decision making in the last hours or days of life which will focus on ensuring good quality of care. The provision or withdrawal of interventions with the direct aim of hastening death is contrary to the rationale of the LCP, contrary to GMC guidance, and illegal” (MCPCIL 2012).
As patients or relatives of patients, we may sometimes resist the recognition that we or our loved one is dying and may push for unnecessary treatments or procedures which are burdensome or harmful and which do not improve the quality of the person’s life. On the other hand, we all wish to know that proper care is given until the end, and that a person who dies has not been deprived of treatments that would have been beneficial or even deprived of further weeks or months of life. The Catholic perspective on this will show concern both to avoid the danger of overtreatment and to avoid the danger of under treatment. This understanding of virtue as lying between opposite vices was clearly set out in the bishops’ conference document on the Spiritual Care of the Dying:
“There are two things that need to be kept in mind in end of life care: respecting life and accepting death. Respecting life means that every person must be valued for as long as they live. One implication of this is that death should never be the aim of our action or of our inaction. We should never try to bring about or to hasten death. On the other hand, accepting death means that we should prepare properly for death. One implication of this is that we should not deny the reality of the situation or flee from the inevitable by seeking every possible treatment.” (CBCEW 2010, paragraph 2.1)
There is a danger that media reporting of claims of abuse may not always present a true and balanced view of the LCP and its purpose, although all such claims should be taken seriously. Understanding of current practice should also be informed by evidence from national audits and from empirical research published in peer review journals (for example, National Audit Office 2008, NCEPOD 2009, NCDAH 2012, Veerbeek et al. 2008). The principles behind the LCP are compatible with a Catholic understanding of morality and of the meaning of life and death. Nevertheless, as the LCP has been used more extensively there may well have been increasing occasions where someone supported by the LCP has not been provided with adequate care, or where someone has been referred to the pathway inappropriately. Examples of these cases, reported in the media or not, should be used to improve the pathway in future iterations. In the meantime, Catholic doctors, nurses, relatives and patients should continue to take care that the Liverpool Care Pathway, or indeed any other integrated care pathway, is used correctly, to identify and address the patient’s actual needs (Atkins 2012). In some situations, this may involve being aware of and seeking to address some of the pressures (described above) that have the potential to subvert proper implementation of the LCP.
There are different levels of ethical analysis of an integrated pathway for the care of the dying: its fundamental rationale; the precise wording of its documentation; the possibility of using it ethically in the best case; the possibility of its ethical use in the typical case (in general or for the most part); the actual pattern of use of the pathway; the possibility of abuse; the possibility that flaws in the pathway might make some kinds of abuse more likely; the further ethical guidance that might be necessary for healthcare professionals in applying the pathway; and the ethical guidance that may be necessary for patients and relatives to mitigate the chance of abuse on the pathway.
This comment has focused on the rationale of the pathway and thus the very possibility of good use. It suggests that the LCP can be used ethically when applied by skilled and ethically committed professionals. Used correctly, the LCP can and does help support the kind of good death for which Catholics pray, a peaceful death that is not hastened but is accepted consciously with faith in God and hope of everlasting life in the world to come.
In regard to the wording of the core documents, while the LCP is already in its twelfth iteration, there are ways in which this wording could be improved further, for example by making use of the wording of the GMC guidance in relation to CANH, and no doubt in other respects. There is more work to be done here.
In regard to actual use, there is certainly evidence of abuse and failures of care of people on the LCP, but such evidence does not show that its use in general or for the most part is unethical. There is more to be learned about how the LCP is being applied in general and how this may be improved and failures avoided. It is to be hoped that the current Department of Health review of individual cases and of systematic data will shed some light on this.
There is thus more work that needs to be done in relation to ethical analysis of the LCP. This comment is intended to help clarify some of the key ethical and clinical questions raised by the pathway in the hope of contributing to the eventual resolution of this complex and important area.
David Albert Jones is Director of the Anscombe Bioethics Centre, Research Fellow at Blackfriars Hall, Oxford, and Visiting Professor at St Mary’s University College, Twickenham. He is a member of the National Reference Group of the Liverpool Care Pathway.
This comment is the Director's personal view and is not intended to represent the position of the Anscombe Bioethics Centre.
Atkins, M. 2012. “Care or Neglect? Underneath the LCP” Catholic Medical Quarterly 62(3): 23-26.
Catechism of the Catholic Church. 1999. London: Geoffrey Chapman.
CBCEW, 2010. Catholic Bishops’ Conference of England & Wales Dept. for Christian Responsibility & Citizenship. A Practical Guide to The Spiritual Care of the Dying Person. London: CTS.
Costantini, M., Ottonelli, S., Canavacci, L., Pellegrini, F., Beccaro, M. 2011. “The effectiveness of the Liverpool care pathway in improving end of life care for dying cancer patients in hospital. A cluster randomised trial’ BMC Health Serv Res. 11: 13.
Dalal S., Del Fabbro E., Bruera B. 2009. “Is there a role for hydration at the end of life?” Curr. Opin. Support Palliat. Care 3: 72–78.
Fisher, A. 2012. Catholic Bioethics for the New Millennium (Cambridge: Cambridge University Press)
Gambles M, McGlinchey T, Aldridge J, Murphy D, Ellershaw J. 2009. “Continuous Quality Improvement in Care of the Dying with the Liverpool Care Pathway for the Dying Patient”. International Journal of Care Pathways, vol 13: 51–56.
GMC (General Medical Council), 2010. Treatment and care towards the end of life: good practice in decision making (London: GMC).
Keeler, A. 2010. “Artificial Hydration in Pediatric End-of-Life Care” Virtual Mentor. 12.7: 558-563.
KNMG, 2009. Guideline for Palliative Sedation (Royal Dutch Medical Association).
MCPCIL (Marie Curie Palliative Care Institute Liverpool), 2009. Liverpool Care Pathway Generic Version 12 http://www.liv.ac.uk/mcpcil/liverpool-care-pathway/documentation-lcp/ (accessed 17 January 2013).
MCPCIL, 2012 “Liverpool Care Pathway for the Dying Patient (LCP) ‐ FAQ” http://www.liv.ac.uk/media/livacuk/mcpcil/documents/LCP%20FAQ%20August%202012.pdf (accessed 17 January 2013).
Maltoni, M., Pittureri, C., Scarpi, E., Piccinini, L., Martini, F., Turci, P., Montanari, L., Nanni, O. and Amadori, D. 2009. “Palliative sedation therapy does not hasten death: results from a prospective multicenter study”. Annals of Oncology 20: 1163–1169.
National Audit Office. 2008. End of Life Care. Stationery Office London.
NCDAH, 2012. National Care of the Dying Audit – Hospitals. Rounds 1 (2006-7), 2 (2008-9) and 3 (2011-12). Marie Curie Palliative Care Institute Liverpool-Royal College of Physicians. http://www.liv.ac.uk/mcpcil/liverpool-care-pathway/national-care-of-dying-audit/ (accessed 17 January 2013).
NCEPOD (National Confidential Enquiry into Patient Outcome and Death). 2009. Caring to the End? A review of the care of patients who died in hospital within four days of admission
Nowarska A. 2009. “To feed or not to feed? Clinical aspects of withholding and withdrawing food and fluids at the end of life”, Advances in Palliative Medicine 10: 3–10.
SCDF (Sacred Congregation for the Doctrine of the Faith) 1980. Declaration on Euthanasia
Seale, C. 2009. “End-of-life decisions in the UK involving medical practitioners”. Palliat Med 23: 198–204.
Seale, C. 2006. “National survey of end-of-life decisions made by UK medical practitioners”. Palliat Med 2006; 20: 1–8.
Stephenson, J. 2012. “The Liverpool Care Pathway” Triple Helix Winter 2012: 14-15.
Sykes, N. and Thorns, A. 2003a. “The use of opioids and sedatives at the end of life”. The Lancet Oncology 4 (5): 312-318.
Sykes, N. and Thorns, A. 2003b. “Sedative Use in the Last Week of Life and the Implications for End-of-Life Decision Making”. Arch Intern Med. 163: 341-344.
Veerbeek L, van Zuylen L, Swart SJ, van der Maas PJ, de Vogel-Voogt E, van der Rijt CC, van der Heide A. 2008. “The effect of the Liverpool Care Pathway for the dying: a multi-centre study”. Palliat Med 22(2): 145-51.
From ageism to elder abuse to euthanasia?
Kilian de Lacy
An old man sits in his chair in the rest home, staring at the wall, wishing he were dead. The home has changed hands a few months ago and he is desperately unhappy. He has asked to be moved somewhere else but the proprietor, backed up by the health and government authorities, has told him he has to stay till he dies. His power of attorney is held by his sister, herself dying of cancer and unable to stand up for him. What else is there to look forward to but death?
When he first came into the rest home, he needed quite a lot of care. A diabetic, he had not been taking his medication, he was confused and required a high degree of supervision. The woman then in charge had looked after him, attended to his physical and psychological needs, and he had started to take control of his life again. But with the arrival of a new owner, things changed. He was bullied; his friends were denied access to the facility; his phone calls to his sister were monitored; his bank account was being accessed by the owner of the rest home without his permission and without any accountability for the money taken; his visits to his sister had strict conditions imposed on them. Understandably, his morale had dropped to zero, and his situation looked hopeless. He told his sister he just wanted to end it all.
This true story is a classic case of elder abuse and illustrates how lack of care and, worse, abuse, leads to a state of mind in which death appears as an obvious answer to an elderly person’s problems. For someone looking in from the outside not fully aware of the circumstances, the old man’s wish to die might seem a fair request. Surely, it might be asked, the kindest thing to do would be to accede to his wish to die? Give him some extra sleeping pills or a lethal injection and let him drift off, away from the harassment and bullying, no longer a burden to anyone, no longer having to suffer intolerably.
Unfortunately, the case illustrated above is not an isolated one. Elder abuse, (defined as a single or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person) is a global problem. Age Concern New Zealand note that older people are particularly vulnerable to abuse because they are dependent on others and there is often an imbalance of power. A large community based study in the United Kingdom reported that 2.6% of older people experience some form of abuse or neglect each year.
The New Zealand experience, we are told, mirrors the international figures. 2.6% is equivalent to two older people in New Zealand being abused every hour of every day. It is also said that only 16% of all abuse incidents reach service agencies. Part of the reason for this is that older people may fear a complaint will result in more abuse or poorer care. This means that abuse, once it starts, is likely to continue to happen.” Age Concern New Zealand report that they deal with 1,000-1,500 new referrals a year, or four per working day of which approximately 1,000 are substantiated. If this figure represents only 16% of incidents, then the total number of cases is in the vicinity of 6,250 per year or 17 cases per day. It is not absurd to say that getting old in New Zealand is fast becoming a dangerous pastime.
In addition, it is reported that almost 80% of abuse is committed by family members. It is also known that family members continue to abuse their older relatives even when they are in residential care. Furthermore, over 40% of abusers are adult children. As Baroness Ilora Finlay recently remarked: Parents love their children but children do not always love their parents.
Our elderly people deserve better. They have worked hard to build up our country, both in population terms and financially. While there is no denying that there are increased health and care costs for older people as they grow more frail, and while there are hard decisions to be made around the fair allocation of healthcare resources, we must resist viewing and speaking of the elderly primarily as financial (as well as emotional and social) liabilities. This is, in itself, a form of abuse, given that it will affect the way in which they come to see themselves – as burdens rather than as persons deserving the best of care and entitled to a sense of well-being and security. It would be grossly unjust for the elderly to bear a disproportionate burden of responsibility for solving a problem that affects all of society.
What is called for is a degree of soul-searching at the individual and societal level. Where are our priorities? Is it people or money which is the more important? The Maori certainly have an answer to that question: he tangata, he tangata, he tangata – it is the people, it is the people, it is the people.
For those inclined to consider the life of the old man highlighted above as worthless, of low quality, and generally not worth living, there is a happier ending. Following an eventual change of residence to a more supportive and caring environment, he is back to his old self, cheerful, participating in activities with other residents, happy and not in the least interested in wanting his life to be ended.
The subject of elder abuse is about to come under more scrutiny. If Maryan Street’s End of Life Choice Bill were to be picked out of the ballot and passed by parliament, it would become legal, and quite easy, for an elderly person to request assistance to die. Putting aside one’s views about the morality of euthanasia, one of the strongest reasons for opposing the legalisation of state-sanctioned assisted suicide is that there would be elderly people who would feel pressured, subtly or not so subtly, into asking for assistance to die.
The elder abuse statistics illustrate that this scenario would likely become commonplace. Chances are, were euthanasia legal, the elderly person in this story would not now be alive and enjoying life. That would represent a gross injustice and ultimately a failure on the part of all of us to protect a vulnerable person and to address the real issue of ageism and elder abuse. But of course none of us would know – we would, instead, be sitting back comforted by, and even proud of, the fact that we had allowed him to exercise his choice. And each of us is capable of putting a face to this scenario because the abused elderly person asking for euthanasia or assisted suicide could be our grandparent, our mother or father, our brother or sister or the old lady next door who gives the children sweets when they visit … or even ourselves.
In the current ageist climate legalising euthanasia would be nothing other than downright dangerous for the elderly. What is urgently needed is a concerted drive to terminate elder abuse and to work towards a more inclusive, more caring and less ageist society.
Elder Abuse: Who is involved?
- 65% to 70% of abused are women. Even taking account of the fact that there are six women over the age of 65 for every five men, women are over-represented as victims of elder abuse.
- 40% to 46% of abused live alone.
- Up to 80% of abuse is committed by family members. Family members continue to abuse their older relatives even when that person is in residential care.
- Up to 50% of abusers are adult children.
- Unlike other forms of family violence, abusers are as likely to be female as male.
- Up to 35% of abusers are primary caregivers. This could be a family member or support worker if the person is living in the community, or a staff member if the person is living in residential care.
Elder Abuse: The impact on older people
- For about half of the older people supported by Age Concern over the last ten years, their health was significantly affected by the abuse they experienced.
- Two out of every five abused people experienced significant reduction in their independence, loss of confidence and self-esteem, and reported feeling very frightened or anxious and emotionally distressed.
- About a quarter experienced long-term consequences.
Source: Age Concern: http://www.ageconcern.org.nz/safety/elder-abuse/key-statistics-about-eanp
Kilian de Lacy is a writer and a nurse (now retired) who specialised in the care of the elderly and dying. She continues to work with the elderly through Grey Power. She also provides budgeting advice for vulnerable individuals and families through Agape Budgeting Service. She is an active member of Holy Family Parish, Porirua.
Guest Editorial: The place of elderly persons and our responsibility for care
Samuel J Ujewe
On 16 May 2012, the BBC featured a brief documentary showing the negative impact of China’s one-child policy on the ageing population. It highlights a disturbing fact; whereas elderly people have been traditionally cared for in the family circle, China’s population policy, coupled with rapid industrialisation and urbanisation, is increasingly leaving elderly persons to care for themselves. As a consequence, the Chinese government, while providing some form of social welfare for the elderly, is now encouraging only-child parents to have more than one child in order to reinstate aspects of family involvement in care for elderly people.
In New Zealand, increasing numbers of people are now being cared for in retirement villages and residential homes for the elderly. These services aim to provide a dignified place of care for seniors as they become more dependent on others and are unable or unwilling to live alone or with other family members. While there is, rightly, a significant focus on providing the appropriate level of financial and physical care for the elderly, their needs as persons also encompass the social, intellectual, emotional and spiritual spheres. One of the biggest challenges is not to lose sight of these aspects of care.
Many people continue to support their elderly parents or family members while in residential care homes. Nevertheless there is a concern that the high quality physical and health care provided is not always matched by the social and emotional support that people desire from their families. Thus, numbers of elderly people find themselves isolated from active family and social networks. The question arises as to whether the isolation some people experience is, at least in part, an accident of the social services provided for them.
What do I mean by this? A United States study on ageism notes that in primitive society, old age was frequently valued with older persons seen as providing knowledge and experience. In more recent times, as the number and percentage of older persons has grown, there has also grown a perception that the elderly are a burden to families and society. The very real concerns about the increasing costs associated with caring for the elderly in residential facilities carries with it the real risk that it will reinforce a perception of persons in care as financial liabilities. 
This has been further backed up by United Kingdom research which notes that even when societal agreement for material support of older persons is strong, ageist stereotypes abound that dictate how older persons are viewed and treated. In the study in question, persons over 70 were perceived as posing a greater threat to society by placing burdens on the economy rather than by affecting others’ access to services or way of life. In addition, respondents viewed people under 30 and over 70 as having little in common. These perceptions potentially undermine the sense of moral responsibility we all have to provide care for the elderly. This responsibility is ultimately founded on the common virtue of gratitude as reciprocity that flows from our experience of family upbringing.
It is of particular interest to note that in 1995 Singapore passed into law the Maintenance of Parents Act in order to address cases of neglect of elderly parents. This Act imposes a legal duty on adult children to care for their elderly parents when they are unable to care for themselves. It should be noted that the Singaporean law reflects the traditional family values of the people where care for elderly parents is provided by their children or close relatives: “parents who brought up their children should in turn be cared for by them”, says a one-time president of Singapore. Singapore’s Ministry of Health affirms that the act is meant to codify the filial obligation that all sections of the community already recognize and which a vast majority of children gladly discharge. Art Lee confirms this in noting that 95% of indigent elderly in Singapore are supported by their relatives. The Singaporean approach recognises the fundamental place of elderly people in the lives of others who are family, and the corresponding responsibility owed to them for care.
Whereas countries like China and Singapore are aiming toward reviving or sustaining filial commitment in elderly care, it would seem that in New Zealand the emphasis on improvement is more often focused on increasing financial resources for services and/or better regulatory overview. For this reason it is worth reflecting on the efforts of countries like Singapore and China. While the provision of high-quality elder-care services may offset the financial and physical burdens of care experienced by families, a degree of holistic care may only be attained in conjunction with the continuous involvement of the people who are related to these elderly persons. The question arises as to how this can best be achieved in New Zealand.
In the African culture, individual identity is never considered apart from the wider family a person is part of. There is never a point in life where a person becomes completely separated from his or her family; an emerging family is always at the same time an extension of the existing families of the spouses. It is accepted by both the older-larger and newer-smaller families that they owe each other mutual support and reciprocity plays a substantial role. According to a Nigerian proverb, the child who does not say ‘thank you’ is a witch. Witchcraft is generally associated with ingratitude, and a thank-you for Nigerians does not end in mere words; it is active, expressed in reciprocal gestures for kind acts received. Although no one compels another to reciprocate any kind gesture, it is deemed a responsibility that one should embrace. Thus, in African communities generally, the care of elderly parents remains in essence a responsibility of their children and other relatives.
There are strong parallels between African approaches to family belonging and the Maori culture. As a visitor to New Zealand, it strikes me that Maori values of care and respect for the elderly could usefully inform broader attitudes within New Zealand society. I have also become aware that New Zealand’s laws are particularly sensitive to parents’ duty to care for their children. The challenge I see is to develop a greater societal awareness of adult-children’s duty to care for their indigent elderly parents. Many contemporary societal factors work against this, including the challenges of smaller families and the reality that children often live far away from their parents. The change that is required is a deeper attitudinal one; it is, of course, not as simple as passing a law because no law can possibly effect such a change if is not accompanied by a shift in cultural attitudes.
At the same time, great thought needs to be given to the impact any new laws might have on people’s broader attitudes towards the place and value of the elderly. I have followed with interest the discussions about legalising euthanasia and it occurs to me that one of the questions not being discussed is whether such a law change will make New Zealand a more inclusive and more welcoming place for the elderly and those who are at the end of their life, or a less inclusive and less welcoming place; will this enhance filial responsibility or further undermine it?
The virtue of gratitude as reciprocity demands that the care of elderly parents not be left solely to the responsibility of care-providers. We all have a responsibility – perhaps even a moral obligation – to be actively involved in the care of our parents and grandparents. Residential care services can sustain the dignity of elderly persons only if the people who are part of their lives remain actively and continuously involved. In light of this Lee’s tripartite approach may be worth considering: the state, the voluntary sector and the family, each giving the kind of support that it is best able to provide.
The provision of social services by the state must be seen as a way of enhancing families’ ability to maintain the social and emotional bonds with elderly family members but there is a need for real vigilance to ensure that it does not unwittingly contribute to their greater social and emotional isolation.
Samuel J Ujewe (BA Hons., MHealSc – Bioethics) is from Nigeria and a visiting scholar at The Nathaniel Centre. He recently completed his Masters degree at the University of Otago Bioethics Centre and is about to begin his PhD studies at the University of Central Lancashire, United Kingdom.
Autonomy and dementia: what has been left unthought
The concept of autonomy is widely accepted as a value in healthcare. The dominant conception of autonomy in contemporary society stems from an understanding that equates it with independence or self-sufficiency. A person is said to be autonomous if she has the capacity to engage in critical reflection in order to choose and pursue her own self-interested preferences, unimpeded by the choices and actions of others. These criteria for autonomy are further underpinned by the metaphysical claim that self-conscious reflection is both necessary and sufficient for personhood.
To the contrary, I argue that neither personhood nor autonomy is fully captured by this perspective and, furthermore, that it ultimately fails to attend to the way we do things in the world. Attention to our concrete lived existence shows that persons are more than self-conscious, reflective beings. Rather, we are finite, embodied, discursive beings, fundamentally interdependent and embedded in socio-cultural networks of shared meaningful practices through which our personhood is constituted and expressed.1 Through supported and guided learning we appropriate the shared socio-cultural practices in which we are situated, acquiring the skills and dispositions to become autonomous members of community. That is, we become individuals who are able to enact and sustain meaningful and coherent patterns of activity that rightfully position us in our shared world.
Re-conceptualizing autonomy in light of how we do things in the world has important implications for many of our social practices, including the way we understand and care for people with dementia.
Learning to make sense of our self and our world
Unlike other creatures, the human way of being is not to live a life that is completely guided by instinct. There is an insufficient fit between human physiology and the environment that we have modified over the millennia that we have inhabited it, and we lack a structure of instinctual moves that could present ready-made answers to the question of human existence and flourishing. Instead, to be a human being is to be a particular kind of being: one who has to learn non-instinctive skills of interpreting and making sense of oneself and the world through flexible and creative thinking, so that we come to act in the world in accordance with shared structures of thought. These structures of thought are developed over time in community and they provide a cognitive or conceptual framework through which we come to understand the world and our place within it.
The structures of thought that have increasingly come to dominate western thinking embed a view of the world that seeks to explain things in abstract, theoretical discourse. It is a view sometimes referred to as 'objectivism' because it assumes that things in the world, including ourselves and our experiences, are objects that have inherent properties, with some sort of law-like relations holding between them. It also assumes that our knowledge of these things is acquired through our detached reflection on them. This theoretical orientation maintains that these 'objects' can be reduced to, and are best defined by, certain necessary and sufficient conditions. Therefore, to be a thing of a certain sort, say a person, one must satisfy the conditions that are necessary for personhood, or self-hood. From this perspective, it is argued that self-conscious reflection is not only necessary for personhood, but is also sufficient for the application of the concept. Based on this reductive account of personhood, an individual is said to be autonomous when she can make self-interested choices based upon her capacity for rational reflection, understood as a calculating, prudential activity that is unimpeded by the choices and actions of others.
Such an account can only be sustained when a number of important aspects of our human condition are overlooked. In order to better attend to our human context Martin Heidegger argues that what is needed is an approach which elucidates, articulates and remains attentive and responsive to our concrete, lived situation.2 Attention to our life-world reveals that not only are we self-interpreting discursive creatures, as noted above, but also that we are finite and embodied beings, historically, culturally and socially embedded in a shared world, a place of significance in which things matter to us.
Our understanding of the world as a place of significance develops through our embodied interactions with things, and it is guided and supported by others who show us what matters and how things are done in our particular community. Over time we develop a repertoire of habituated practices which are embodied, pre-reflective and dispositionally informed. Guided and supported by others we grow into a particular relationship and attitude to the world, so that we acquire habits of conduct at the same time that we are learning about the world. This dispositional understanding, informed by the signification of culture, history and discursive practices, is our ethos. It orients us in the world and shapes the values that come to dominate our life. It represents the significant responses of others and the ways that they have taught us to deal with the threats and opportunities that the world presents. In other words, our human situation is thoroughly relational and dialogical and we are dependent upon one another for the possibility of being understood.
For example, in learning something about the world where cups play a role, we develop our understanding of a cup not by standing back and reflecting on it and establishing its properties, but through our embodied interaction with it, by picking it up and using it in the way that we have been taught. We understand something about the cup, ourselves and the world when we engage appropriately in practices where cups are important. This embodied understanding is pre-reflective and embedded in a context of significance. Thus, we come to understand a cup not through its composition, but through interpreting its role in a caring social practice vis a vis water; its ability to hold something, the need to quench a thirst, the location of a tap, and the integrated bodily movements required to bring this all about. Our ability to conduct ourselves appropriately whilst enacting a task is a measure of how well we understand a particular socio-cultural context; it does not require us to rationally reflect on or describe the decontextualized details of the encounter.
Human understanding is not, therefore, primarily about working out what to do through a process of rationally organised, reflective information processing. Rather, it involves interpreting and integrating situated, embodied, complex communicative activity and what that means to our self and others as emerging, evolving persons. It is through our embodied, pre-reflective involvement that we learn to recognise joy in another's smile, her laughter and her movements; we feel the sorrow and pain in another's posture and her tears; we grasp the tone of another's thoughts through her expression and the sounds of her words; we understand an entreaty through her outstretched arms, and we respond appropriately because we have learnt to interpret and evaluate the meaning of these human situations.
Nested within a complex interdependent web of meaningful involvement, our personhood continually unfolds and evolves, constituted by the interactions within which we are situated and sustained, interactions which mirror to us something about who we are, what we are capable of and what is important to us. Who we become is a matter of who we interact with and, if we are fortunate, those interactions provide us with a sense of value and self-worth that positively defines our place in the world. Our personhood therefore, does not belong to self-reflection but to social recognition. And as finite creatures, who are limited and vulnerable, we need the right care and support from others in order to develop and sustain the social standing and recognition that is necessary for becoming a fitting member of community.
Over an extended period of time, through supported guidance, we become enculturated into an interdependent matrix of understandings that are normatively grounded. For example, a parent teaches a child that if they want to be a 'friend' and as a corollary have 'friends', she has to behave in certain ways and not others. The concept 'friend' is a shared concept which is rule-governed, constituted by norms relating to the truth of what it is to be a 'friend' and by which we can evaluate whether a particular act is one of 'friendship' or not. The notion of 'being a friend' then enters into what one values. Having friends elicits feelings of connection and significance in the lives of others and one feels bereft when lacking the intimacy of friendship. These normative interactions inform the way that we live and come to constitute our significant interests. Through our ongoing interactions in the world we reveal what is important to us, so that others who know us come to recognise the values that we live by.
Nurtured and sustained by others, we come to experience ourselves as someone of value as we learn to participate in a number of different roles in a range of socio-cultural contexts. We become accomplished in certain discursive practices before others, and as continually evolving creatures we learn new practices as we enter into new situations. Appropriating such well-tested social practices provides the basis of a meaningful life and locates us in a particular tradition. In learning to skilfully apply our growing repertoire of dispositionally informed, dynamic patterns of normative interaction, we come to deal with and adapt ourselves appropriately to life's contingencies in a range of socio-cultural contexts. That is, we become autonomous individuals, able to enact and sustain fitting interrelational responses to the situations we find ourselves in.
The attenuated conception of autonomy that has come to dominate western thinking radically distorts our human context. Autonomy is not about acting according to one's own desires and preferences, directed by rational, reflective endorsement. Rather, the dynamic complexity of our existential situation means that autonomy emerges as an embodied, pre-reflective, normatively informed, temporally extended, context specific, interdependent activity which can be enhanced or diminished by others, depending upon the form that our interactions take. It is not an isolated achievement and it cannot be fixed at some time.
Implications of our interdependent existence: personhood, autonomy and dementia
Any structure of thought extends beyond mere conceptualization; it not only exerts influence on those to whom the concept applies, but also has repercussions for the social arrangements which structure our families, educational institutions, health care practices and legal systems. Thus, revealing the underlying assumptions that a concept such as autonomy is based on, and giving voice to the things that have been concealed, is not just an academic exercise, but an activity in which ways of living are at stake. Reductive theories of personhood and autonomy give us an impoverished view of humanity and a distorted view of autonomy. By focusing only on specific limited intellectual functions and overlooking the fact that human understanding is fundamentally pre-reflective, embodied and dispositionally informed, we risk treating those who do not meet the limited objectivist criteria as non-persons - somehow less than human. Those diagnosed with dementia are at risk of being treated in this way.
The typical approach to diagnosing dementia is through the administration of standardised psychometric tests, which measure defects in an individual's abilities in a way that can be easily quantified. These tests involve a series of decontextualized questions which isolate particular aspects of cognition (for example, attention, perception, memory, and language) against which an individual's performance is scored, thereby enabling 'generalisations' about a person's abilities to be made. Although these reductive tools can identify some of the problems that individuals experience in their everyday life, they allow only a shallow assessment which focuses on a person's deficits, and from which many unwarranted inferences are made. Focusing on static, isolated, moments of decontextualized thought and action, fails to capture the dynamic, embedded and embodied cognitive life of a particular individual interacting in their world. Psychologist Steven Sabat has noted that standardized tests fail to give us any insight into how an individual would respond to such things as hearing a joke, being paid a compliment, recognizing another's need for help, being ignored or embarrassed.3 As already argued, our ability to respond appropriately to such human situations requires interpreting situated, embodied, complex communicative activity and what that activity means, which is a measure of our autonomy.
When we attend closely to the world of those diagnosed with dementia, we find individuals engaging in the socio-cultural dynamics of everyday life in various ways, something which highlights their ability to evaluate, interpret and respond to the meaning of the situations they are involved in. This continues to happen long after the ability to reflect on one's situation is lost. When we recognise that most of our intentional actions are pre-reflective, learned through years of embodied habituation, it follows that the loss of the ability to reflect does not detract from our ability to act autonomously. As situated, embodied beings, our actions have purpose and meaning because they are embedded in a shared world, so that responding appropriately to a situation can take many forms. Our intentional actions can become manifest through our characteristic gestures, our facial expressions, our manners, our tears and our smile, all of which show an evaluative, interpretive response to a situation and an ability to engage with the world in a way that directs the response of attentive others.
So, what does this mean for people diagnosed with dementia? In order to act autonomously and be recognised as such requires that those diagnosed with dementia are sustained by others in meaningful interactive practices and that they are positioned as persons trying to communicate something intelligible, the same things that all of us require. To turn away from this task is to fail to acknowledge that autonomy is interdependent and context-specific and that it can be enhanced or diminished by others.
Even in the later stages of dementia, individuals can convey their coherent, intact intentions but may be unable to execute them. But even then this is not unlike the situation for the rest of us. When my car breaks down, I may be able to convey my intention to have it fixed, as it matters to me, but I need the assistance of others to enable this to happen, such as someone to tow my car into the garage, someone to fix it, someone to transport me hither and thither whilst it is in the workshop. I may also need others to anticipate and suggest some things that I have not thought of.
As our self-worth and standing amongst people are constituted by our interactions with others, how others think and respond to someone diagnosed with dementia influences how she then comes to see herself. This means that it "is in their everyday interactions, beyond the neuro-pathological processes in the brain, that people with dementia can be supported in, or experience assaults on their personhood"4 and as I have argued, also on their autonomy.
When we acknowledge that our human existence is one of complex inter-dependence, that the flow of our interactions in the world are pre-reflective embodied responses to the contexts we find ourselves in, that we are dispositional creatures moved by the meanings that things hold for us, and that we are all vulnerable beings who require others to give us appropriate opportunities and support, then we see that the needs and well-being of those with dementia are not dissimilar to our own. It is an existential situation that requires us to position and sustain those diagnosed with dementia as autonomous persons.
Lynne Bowyer is a PhD candidate in the Bioethics Centre at the University of Otago. She has a Master of Arts in Philosophy and a Bachelor of Education. Lynne has worked in primary, secondary and tertiary education.
1 Martin Heidegger, Being and Time, trans. John Macquarrie & Edward Robinson (Oxford: Basil Blackwell, 1967),67-77, 333-382, 95-148, 149-168.
2 Heidegger, Being and Time, 24-28. Heidegger's approach can be described as an ontological, hermeneutic-phenomenological approach to our existential situation.
3 Steven R. Sabat, The Experience of Alzheimer’s Disease: Life through a Tangled Veil (Oxford: Blackwell Publishers Ltd., 2001), 12.
3 Steven R. Sabat, The Experience of Alzheimer’s Disease: Life through a Tangled Veil (Oxford: Blackwell Publishers Ltd., 2001), 12.
4 Ibid., p. 298.
Editorial Euthanasia: A case of ‘selective listening’?
Maryan Street, author of a bill which seeks to legalise euthanasia and physician-assisted suicide in New Zealand, has repeatedly made the point that "the social conversation has moved" since 2003 when the last Bill was put forward. I agree with her.
But, whereas Street means to infer (without real evidence) that there has been a shift in opinion towards favouring change, I mean something quite different. I mean that in the last 10 years the social context has changed and is now characterised by a range of different concerns. These concerns, articulated in various social conversations, lead me to a very different conclusion about the desirability of euthanasia.
Firstly, there has arisen a new conversation about the dangers of growing old in New Zealand. Elder abuse is now a significant issue confirmed, sadly, by recent reports of family members in Christchurch standing over elderly relatives and intimidating them to hand over earthquake compensation pay-outs. The reported case of the woman who died a horrific death from scabies, allegedly attributed to carer neglect, is yet another example. Age Concern (NZ) notes that 1 in 40 of all elderly people experience some form of abuse or neglect, equivalent to two people being abused every hour of the day. Given that the reported cases represent approximately 16% of the total abuse cases, that would amount to a total of 6,250 cases per year or 17 per day. Shamefully, 80% of abuse is committed by family members even when that person is in residential care.
Then there is the conversation that has followed from the reporting of the (Auckland) results of the New Zealand Longitudinal Study of Ageing. Over half of those questioned were lonely and nine per cent described themselves as "severely" or "very severely" lonely. Depression is also a significant factor for more than 20%, and 40% report experiencing everyday discrimination, mostly because of age. The study further notes that elderly people are facing a future of less housing and income security. These figures are of huge concern when considering research which shows that persistent requests for euthanasia or assisted-suicide are related to loss of control, social isolation or being a burden rather than a desire to avoid a painful death.
There has also been a lot of talk about the rising number of suicides amongst elderly New Zealanders. Dave Armstrong (The Dominion Post, 24 September) has challenged us to get the issue of suicide into the open and to recognise the "complex factors" which contribute to the problem including "relationship breakdowns, depression and old people feeling they are a burden." Making suicide easier to access is not what Armstrong and others have in mind; it is hardly a caring, let alone ethical, solution to this problem and it will send a mixed message to our young people at a time when youth suicide remains a growing problem in areas such as Northland. To those who say this is not what Street's Bill is aiming to do, it should be noted that her proposed bill is not just for people who are dying and, moreover, it includes persons, young and old, with irrecoverable mental illnesses.
These conversations point to powerful, deep cultural and societal forces at work. Personal choice is not something we exercise in splendid isolation; our choices are always constrained by the pressures and influences around us and they impact on others. What a person believes he or she should do is not necessarily the same as what an individual really wants. No amount of safeguards can protect people from being caught up in these powerful currents.
While a law change may well benefit a very small number of strong-minded individuals, in reality very few people are like that. As Baroness Ilora Finlay notes, in the face of illness and increasing dependency most are "ambivalent, oscillating between hopelessness and hope, worrying about being a personal or financial burden on those they love or that their own care costs will erode their descendants' inheritance." The end result of what one commentator has called the "continual apology for your own existence" would be significant numbers of people being steered towards euthanasia. This is neither free choice nor what Street has called "vigorous self-determination".
We should be very afraid of the consequences that would follow the legalisation of euthanasia, in particular the way it would undermine many people's will to live. While supporters of Street's Bill argue that a change in the law is about 'choice', the real fear is that we will realise all too late that its effect will be to steer people down a one-way-dead-end street.
Maryan Street and I have obviously been listening to very different conversations. If as a society we are going to properly discuss euthanasia, it must occur as part of a fully informed social conversation rather than one based on selective listening.
If our politicians decided that euthanasia was too dangerous in 1995 and 2003, then it is even more so now given the way "the social conversation has moved."
John Kleinsman is director of The Nathaniel Centre
Euthanasia: A Pacific Island (Tokelauan/Samoan/Cook Island) perspective
The man who had Alzheimer's disease and was dying had struggled for so long. He had endured memory loss for many years. All the while his daughter had taken very good care of him. One day, towards the end of his life she asked him, "Do you know who I am?" and he replied, "No, I don't know who you are, but I love you."
For us, life is valued above all things. Traditionally, for Polynesian cultures, whatever the medical situation of a person, that person should always be cared for and looked after. Our Polynesian culture and our Christian values teach us that life is a gift given by God. Life is not something to be ended by an individual's choice, as with assisted suicide or euthanasia. The opportunity to care for elderly parents is also seen as a gift and a privilege to that family.
When someone is ill or dying, the idea of assisted-suicide or euthanasia is entirely foreign to us. There is no word in our language for this concept and consequently it does not enter into our thinking. The opportunity to care for and look after someone who is ill or dying/suffering is seen as a blessing even though it may present significant financial and other challenges. At such times the extended family and community networks come to the fore – it is common for immediate and extended family and community members to visit, provide food, and massage and converse with the person who is ill. No-one would ever be left to die alone.
Supporting the family and the person concerned through ongoing daily practical and emotional support enables the sick person to find ways to feel better and achieve the best possible quality of life during the latter stages of their life journey.
While we strive to do all that we can to alleviate the suffering, the most important thing is for a person to experience the best care they can in order to live the final part of their life with dignity and love. This calls for us all to act with dignity and love and remain present to the person who is dying.
Rev Fr Penehe Patelehio is the Parish Priest of Holy Family Parish, Porirua, Wellington.
Achieving a ‘good death’: supporting health professionals to meet this challenge
Death is a certainty and more often than not we try to avoid thinking about it. However if we do think of our own death, most of us hope it will be pain free, without suffering, relatively quick, and not create an undue burden on those we love . The process of dying might also allow enough time to complete certain tasks or to be with certain people. Most of us would like to have achieved the things in life that are important to us and go towards our death with a sense of peace.
There is a growing body of research that attempts to understand the social aspects of death and dying that makes it clear that what people want and need at the end of life can vary considerably. Many of these studies have focused on the concept of a 'good death', which involves taking into account the differing priorities based on the dying person's beliefs, cultural background and individual social circumstances and the circumstances of their disease. Studies asking patients and their families what constitutes a 'good death' reported factors that centered around aspects of self-control and respect as an individual, completion of a life well lived, not being a burden on others, dying in the preferred place, and spiritual and physical comfort (Pinson et al, 2011; Miyashita et al, 2008,) In contrast, studies that centered on health practitioner perspectives found that a 'good death' was more focused on the importance of symptom control, the person being aware they were dying, and family being aware and prepared for the person's impending death (Griggs, 2010).
Therefore, while caring for and supporting those who are dying and their family/whānau can be an enormously rewarding aspect of work for health care professionals, it can also be complex and at times very challenging.
Health professionals, especially those working and caring for the dying, constantly strive to meet the needs and wishes of the patient and their family/whānau. They do this within the constraints of knowledge and evidence (scientific and sociological) and the resources available to them. There is willingness and urgency for us as health professionals to 'get it right' and support the kind of death that could be considered to be a 'good death' for the person we are caring for.
There have been many advances in palliative medicine since the first modern Hospice service was established in the United Kingdom in the 1960s. This includes better understanding of symptom management, use of analgesics in complex pain syndromes, new medications and delivery methods, and acknowledgement of individual choices and family's needs and expectations. Recognition of the need to care for the whole person is seen as one of the fundamental principles of palliative and end of life care. This approach includes the need to provide care that meets not only the physical needs of the person but also their spiritual, cultural, social and emotional needs.
Hospices are recognised as providing the 'gold standard' of care for the dying and their family/whānau. There are 32 Hospices listed on the Hospice NZ website, and these facilities provide a mix of in-patient and community care for the dying person within the region they serve. However only 6% of those who die in New Zealand die in a Hospice, with the majority of New Zealanders dying in hospital (34%), or for those over 65 dying in aged residential care (31%) (PCC, 2011).Therefore, there is an imperative to transfer that best standard of care from Hospices to these other places of care.
One of the more recent tools aimed at supporting the transfer of best practice model of palliative care to non-Hospice settings has been end of life care pathways. Care pathways have been used in health since the 1980s as a way of aiding complex decision making and organising care processes for a specific group of patients over a specified period of time. The end of life pathway available in New Zealand, and endorsed by the Ministry of Health, is the Liverpool Care Pathway for the dying patient (LCP).
As suggested by its name, the LCP was developed in Liverpool, England in the mid-1990s. It was a joint initiative of the Royal Liverpool and Broadgreen University Hospital National Health System Trust and the Marie Curie Palliative Care Institute in Liverpool. In the UK, the LCP is recognised as a model of best practice and is recommended by their Health Ministry in their End of Life Care Strategy (DH, 2008). The LCP is now used in 21 countries around the globe and has been translated into six languages.
Care pathways not only document the treatment that has been given but also prompt clinicians in appropriate goals of care. It is not a prescriptive tool, and as such will not determine what the health professionals prescribe and when. Each instance of the care pathway is specific to the individual patient and is designed to capture the dynamic, changing nature of the person's journey. Individual patient needs are highlighted and thus can be addressed and evaluated individually. But at the same time, by having standardised goals of care, the same level of care can be transferred to all care settings including acute hospitals, aged care facilities, people's own homes, and hospices.
The LCP is designed to be used in the last days or hours of life when all reversible causes of a patient's deteriorating condition have been assessed and managed appropriately. If a person's condition improves (e.g. a positive change in conscious level, functional ability, mobility, or the ability to perform self-care) the carers will stop using the New Zealand LCP to guide care, and reflecting the person's condition, commence an appropriate plan of care.
The recognition and diagnosis of dying is always complex, irrespective of a person's medical diagnosis or history. A multidisciplinary team decision, involving the doctor, nurse, and other health professionals is important in making this clinical judgement. Communication with the patient's family/whānau is pivotal and all decisions leading to changes in care should always be communicated to both the dying person (if possible and appropriate) and their family/whānau.
The LCP is family centred, focusing not only on the physical aspects of care, but also on communication, and the spiritual and cultural care of the person and their family/whānau. The New Zealand LCP document has been altered to include specific goals that New Zealand deem essential when caring for the dying, including the addition of goals relating to cultural care. Currently, there is a Health Research Council of New Zealand funded research project underway entitled 'Culturally Appropriate End of Life Care for Māori', with the New Zealand LCP document being used as a framework for the research.
The New Zealand LCP is now being used in over 300 sites across hospices, hospitals, in people's homes and aged care settings within New Zealand. The LCP supports but does not replace clinical judgement and is not a treatment in itself. The use of the New Zealand LCP must be underpinned by a robust on-going education programme and forms part of the continuous quality improvement programme of an organisation. This ensures that all health professionals who are caring for the dying are constantly learning and reflecting on best practice end of life care.
The use of tools such as the LCP has been consistently demonstrated to benefit the practice of health care professions in caring for those who are dying. In research conducted in New Zealand acute care and aged care settings health professionals were asked whether they felt that their care had changed since using the LCP. They responded that their communication both with families and other health professionals had improved, and in addition, there were also marked improvements in teamwork, documentation, and clinical practice. It was felt that the health professionals using the LCP were better able to address patient symptoms and their confidence in how to offer high quality palliative care had increased, both in regard to the patient, and to the patient's family/whānau. (Clark et al, 2011, Clark et al, 2012)
Usually when a person dies they are not in isolation. In addition to family members, many health professionals are often involved in the process, such as medical staff, nurses, care assistants, chaplains, therapists, pharmacists, social workers and carers. The LCP document provides the scaffold for all of these disciplines to meet and coordinate around the care of the dying person.
Whatever people perceive to be a 'good death', health professionals charged with caring for those nearing the end of their life and their companions have a responsibility to support them. For the person dying a 'good death' will revolve around being pain free, treated with respect and being at peace. For the family/whānau, a good death will involve comfort of the dying person, and having access to that person in the last hours. For health professionals, a 'good death' will involve a balance of the needs of the dying person with access to medication and other resources, and the needs (or limitations) of the organisation or location where the dying person is being cared for. Health professionals need to appropriately utilise the resources available to them: be it palliative care expertise, medications, and clinical pathways. Clinical tools such as the LCP support health professionals facing the challenges of helping people to achieve a 'good death' regardless of what the person is dying from, or where they are dying.
Bridget Marshall RN MN is the Lead for the National LCP Office for NZ.
The Ministry of Health funded National LCP Office was established in 2008 to promote and coordinate the sustainable implementation of the LCP across all District Health Boards in New Zealand.
Clark, J, Sheward, K., Marshall, B., Allan, S. (2011) Staff perceptions of end-of-life care following implementation of the Liverpool Care Pathway for the dying patient in acute care setting: a New Zealand perspective. Journal of Palliative Medicine. 15(4); 468-473.
Clarke, J., Marshall, B., Sheward, K., Allan, S. (2012) Staff perceptions of the impact of the Liverpool Care Pathway in aged residential care in New Zealand. International Journal of Palliative Nursing. 18(4), 171-178.
Department of Health (2008) End of Life Care Strategy available on http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277
Griggs, C. (2010) Community nurses' perceptions of a good death: a qualitative exploratory study. International Journal of Palliative Nursing. 16(3), 139-148)
Miyashita, M., Morita, T., Sato, K., Hirai, K., Shima, Y., Uchitomi, Y. (2208) Good death inventory: a measure fro evaluating good death from the bereaved family member's perspective. Journal of Pain & Symptom Management, 35(5): 486-98.
Palliative Care Council (2011) National Health Needs Assessment for Palliative Care, Phase 1 Report: Assessment of Palliative Care Need Available from: http://www.palliativecarecouncil.govt.nz/pub/national-health-needs-assessment-palliative-care
Pinzon, E., Carlos, L., Matthias, C., Isabel, K., Stephan, L., Sabine, F., Martin, W.(2011) Preference for place of death in Germany. Journal of Palliative Medicine. 14(10); 1097-103.
Dementia, identity and spirituality
Because people living with dementia forget details of their past, lose the skills they developed during a lifetime and behave in an uncharacteristic manner, it becomes easy for others to regard them as somehow not themselves – 'not the woman I married' or 'an empty shell of himself'. While we all change over time to some degree, this more drastic and rapid change can be heart-breaking. Often, through pain or fear, we would prefer to distance ourselves and regard the person with dementia as something different from us, a sort of 'non-person'.
Some philosophers have questioned whether someone who has lost language, the ability to reason and their memory of a continuing personal identity qualifies fully as a human being. This argument about 'personhood' in dementia was at its height in the early part of this century. It is now generally accepted, at least amongst those involved with people with dementia, that they are obviously 'people', but vulnerable to being treated as less than unless there is a conscious effort made to maintain their full human status.
Western tradition has privileged reason, reflection and individualism as important markers of identity. Post (1995) writes about how our Western 'hypercognitivist' society overly-values intellect and fails to adequately recognise the vital nature of other aspects of being human. He argues for a more holistic understanding of what it means to be a person, one linked to being sentient, emotional, relational and autobiographical as well as cognitive (Post 2006).
People with dementia do retain a sense of themselves. This, for example, is seen when people still refer to themselves as 'I' or object to attempts to make them do something they don't want to do. That is, they are sentient and retain a sense of agency until the most advanced stages of the condition. People with dementia maintain typical social human relations and emotions seen, for example, when they become distressed about another's pain, look for people to whom they have been closely attached, show frustration during the struggle to communicate or anxiety about how to behave in a situation that is strange to them.
Not all societies or all people in Western society hold the 'hypercognitist', individualistic view. We are more than our own, isolated, brains. In traditional Maori society, to ask about some individual's memory was a mistake; memory was contained in the community and the place and was not the possession of the individual - "memory resides with the tribe" (Shamy, 1997). Loss of memory did not necessarily mean loss of mana or standing. Every person had their place (turangawaewae) in their whakapapa and on the land; there was no way that forgetfulness could change that. The elder was accepted regardless of his or her cognitive state.
This world view reminds us that humans are social creatures and our place in society is not just related to our personal efforts; we are part of a greater whole. Our community very much defines and identifies us, whether through our job, our family, our church, our interests - bowls or Country and Western - or a community of particular people, deaf or lesbian, for example. Even people who would prefer to shun society must make contact from time to time; their aloofness and wish to avoid human contact is part of their personal identity. We are who we are because of who we associate with and how we interact with them, our shared history and relationships. This is not something that disappears with the onset of memory problems and it is to these sources of identity we should turn to help the person with cognitive impairment retain their human connection and status. "Our task, as moral agents" writes Post (2006), "is to remind persons with dementia of their continuing self-identity. We must serve as prostheses, filling in the gaps and expecting that every now and again, the cues we provide will connect with the person..." (p.229).
Dementia is a condition that lasts years or decades. Initially a person's identity is not an issue, but gradually it may become harder to connect meaningfully with them. Speech becomes fragmented, then reduced to a few words, then completely lost. As it gets harder to communicate, the onus to make and keep in contact lies more and more with the person without dementia. Imaginative efforts to understand the person with dementia are required. These involve learning about the person's former personality and habits, close observation of body language, a willingness to make informed guesses and a lot of trial and error.
For example, a woman living in a rest home refused to leave her room for breakfast or eat it there, despite various attempts and encouragement from others. From their investigations, staff understood she was a devout Catholic who liked to say the Rosary at the beginning of each day. However, she would not say the Rosary unless her room was in an orderly state, suitable for a respectful encounter with God. Once they knew this, the staff came in early to make her bed and tidy up. She could then say her prayers and come out to enjoy her breakfast.
The person with dementia remains aware of and sensitive to others' emotional state for a long time and may reflect this with anxiety, withdrawal or aggression. In 1997, Tom Kitwood wrote about the 'malignant social psychology' of residential homes for people with dementia. Negative interactions with staff erode the resident's 'personhood'. He described sixteen examples of malignant social psychology, such as outpacing (going too fast for the person with dementia to keep up), invalidation (the person's feelings are denied or dismissed as irrelevant) and infantilisation (treating the person patronisingly, as if they were a young child). When these interactions occur, the person is diminished. Alternatively, when they are treated well, their personhood is enhanced. This is demonstrated by the person with dementia being assertive, initiating social contact, affection, relaxation, creativity and other positive responses indicating well-being. These ideas about 'person-centred care' have received mainstream attention and are beginning to be formally actualised via various programmes such as Dementia Care Mapping, 'The Spark of Life' (Jane Verity) or 'The Eden Alternative'.
Our role as a society, as families, friends and carers is to support people living with dementia, to allow them to be themselves as much as possible. This involves recognising that each person is uniquely themselves, and this means moving beyond the current bias that those who cannot remember and reason are somehow less than real people. They are part of a community that can support or erode that sense of self.
A key part of supporting a person's sense of self involves respect for the spiritual dimension of their personality. Spirituality can be described as "that which is essential to our humanity, embraces the desire for meaning and purpose and has personal, social and transcendent dimensions." (Allen & Coleman, 2006 pp. 205-206) Despite the losses in function and capacity, spirituality does not change as cognition declines. As Goldsmith (2004) writes: "Spirituality is no different in dementia: only the brain changes. The intrinsic value of the person is never lost."
Killick (2004) suggests that spiritual powers may even grow as cognitive capacity wanes. As the thoughts and words that clutter our minds reduce, a person can become more aware of deeper aspects of themselves. This can sometimes be seen in a person's creative abilities e.g. as dementia progresses some painters change in style to express themselves more freely. A Japanese idea is that the person with dementia is privileged because forgetfulness allows them to live only in the present moment - a goal towards which Zen practitioners strive. (This seems a rather romantic idea; many people with dementia become anxious when they do not know what is going on.)
Christine Bryden (2005) describing her own experience of dementia indicates that she has become more aware of her spirituality:
At the centre of our being lies the true self, what identifies us to be truly human, truly unique, and truly the person we were born to be. This is our spiritual heart, the centre from which we draw meaning in this rush from birth to death, whenever we pause long enough to look beyond our cognition, through our clouded emotions into what lies within.
However, as dementia progresses people may need more assistance from others to express their spirituality and meet their spiritual needs. This assistance is given by family, friends and caregivers, formal and informal. In New Zealand the Whare Tapa Wha (Durie, 1998) or 'bio-psycho-social-spiritual' model acknowledges the importance of spirituality for health. Many health and aged care policy documents such as the Health of Older People Strategy (2002), Palliative Care Strategy (2001) and Aged Residential Care contracts, refer to spirituality, but it is uncertain the extent to which such holistic care is actually implemented on the ground.
To conclude: Holistic models should enable carers to attend to the whole person – including the often neglected spiritual aspects – and not just focus on the disease, to the benefit of all people, with or without dementia.
The last words belong to a woman with dementia:
Sometimes I picture myself like a candle.
I used to be a candle about eight feet tall-burning bright.
Now every day I lose a little bit of me.
Someday the candle will be very small.
But the flame will be just as bright.
Burning Bright (Noon, 2003 in Killick 2004)
Dr Chris Perkins (MB ChB (Otago) FRANZCP, Diploma of Professional Ethics (Auckland) is Director of the Selwyn Centre for Ageing and Spirituality. She is a psychiatrist, with particular expertise in mental health issues affecting older people and in intellectual disability psychiatry.
Allen & Coleman ( 2006) Spiritual perspectives on the person with dementia: identity and personhood in Dementia: mind, meaning and the person Ed. J.Hughes, S. Louw & S. Sabat, Oxford, Oxford Medical Publications pp.223-234
Bryden, C. (2005) Dancing with Dementia: my story of living positively with dementia London, Jessica Kingsley Publishers
Dementia Care Mapping http://www.brad.ac.uk/health/dementia/dcm/ Accesssed 02/04/2012
Eden Alternative http://www.edenalt.org/about-the-eden-alternative Accessed 02/04/2012
Goldsmith, M. (2004) In a Strange land...People with dementia and the local church: a guide and encouragement for ministry 4M publications, Southwell
Killock, J. (2004) Dementia, identity and spirituality in Spirituality of Later Life, on Humour and Despair Ed. MacKinlay E. Binghampton NY Harworth Pastoral Press, p 59-74
Kitwood, T. (1997) Dementia re-considered: the person comes first. Buckinghamshire Open University Press,
Ministry of Social Development (2001) Positive Ageing Strategy Accessed 02/04/2012
Ministry of Health (2002) Health of Older People Strategy Accessed 02/04/2012
Ministry of Health (2001) Palliative Care Strategy Accessed 02/04/2012
Post, S. (1995) The Moral Challenge of Alzheimer Disease, Baltimore, John Hopkins University Press.
Post, S.(2006) Respectare: moral respect for the lives of the deeply forgetful in Dementia: mind, meaning and the person Ed. J.Hughes, S. Louw & S. Sabat, Oxford, Oxford Medical Publications pp.223-234
Saks, J. (2002) in Goldsmith, M. (2004) In a Strange land...People with dementia and the local church: a guide and encouragement for ministry Southwell 4M Publications,
Verity, J. The Spark of Life Programme http://www.dementiacareaustralia.com/index.php/biography.html Accessed 02/04/2012
Spiritual care at the end of life What is spirituality?
Spirituality is an inherent aspect of human beings and means many different things to different people. We are not here talking about religion, which is a way of understanding and ordering spirituality for some. People often produce a number of meanings of spirituality, struggling to define something that is dynamic and in continual growth and development.
Healthy spirituality Is unique, embodied, a search, a journey. It has stops and starts and may be lonely and painful as well as enriching and fulfilling. It continues from first cry to last breath – both of which take us by surprise. It has a number of meanings.
- Unknowable – beyond rational and religious
- Centre of self or soul
- Meaning and purpose
- Growth and transitions
- Seeking right path
- Religious beliefs
- Spirituality and connection
This diagram attempts to show the connectedness of spirituality. The three leaves of the diagram represent the self, the natural world and the human other. The space at the centre represents the transcendent within and the space around represents the transcendent without. This ancient diagram is most commonly associated with Celtic Christian art.
The beauty of this diagram is that it shows the intimate interconnection of the whole so that although it is possible to speak about aspects of spirituality in relation to the self, the other, the natural world and the transcendent, in reality all aspects are interconnected. Changes in one aspect inevitably affect all the others. The individual person does not exist in splendid isolation. At any point in time spirituality experienced in the depths of self, with others, in the natural world and the transcendent moves between all these aspects in a fluid flow of connection that resembles a laser light show.
Those who are dying experience deep spiritual pain as do their family and friends. Spiritual pain may involve a deep sense of loss of self, meaning and purpose, control, and of life. Many people find it difficult to understand and deal with. As one patient said "You'd think cancer was catching. People cross the road to avoid having to talk to me."
Physical suffering can be helped by appropriate medicine but spiritual suffering needs deep human connection. People at the end of life are often fearful, feel guilty and unforgiven or unforgiving about past events and worry about being a burden to those they love. They also fear being abandoned. The commonest reason for seeking assisted suicide or euthanasia is the fear of being a burden or being abandoned.
Some years ago I saw a patient who was restless and unsettled. When asked what was wrong he said crossly ''I'm not myself any more''. This is the state of all people who are dying. The healthy competent self is lost and suddenly they become weak, fearful and helpless. It takes time and help to accept this self as another aspect of the journey. It is about seeking healing which can only occur when there is deep human and spiritual connection between patient and carer.
Treating spiritual pain
Treating spiritual pain has three aspects – bearing witness to suffering, enabling hope and letting go. Bearing witness is not being an idle bystander. It is allowing yourself to be drawn in to the world of the 'other'. This can be described as the courage needed to provide a bridge to the suffering person. When this happens both are transformed and enriched.
Bearing witness makes meaning by acknowledging the reality of suffering and not abandoning the sufferer. Bearing witness in this way we become just one human being to another. It takes courage to stay with anyone who is suffering for humans possess mirror neurons that resonate with the suffering of others. It also requires persistence to stay faithfully with the suffering person.
The second major task is to offer hope. There are two kinds of hope.
Extrinsic hope, dependent on other people, happenings and circumstances
and intrinsic hope which comes from within the depths of the person.
Extrinsic hope is not very helpful when based only on options for physical cure. On the other hand it is good to hope for a pain free day, to see a new grandchild, or a friend coming from a distance.
Maintaining hope and trust in the face of death is about accompanying and bearing witness to the patient's journey and providing care for physical, psychological, spiritual and social symptoms for the patient and their caregivers. Most of all it is about listening well. "Listen to me, do but listen and let that be the comfort you offer me." is what Job said to his false comforters. (Job 21:1-2) It is the plea of those who are feeling abandoned and losing hope.
Intrinsic hope may be in remembering past positive or supportive experiences or events. Recalling how spiritual pain and grief in the past has been coped with may be helpful as can remembering the sense of the presence of God or the transcendent.
Being there is central to hope. It is also clear that seeing people who are known is very much better for patients than seeing strangers. Finding and recognising the symbols of hope that speak to the individual is very important. Symbols of hope are unique to each person and they connect that person to events in their lives that have been enabling of growth and love.
I once visited a patient. In the corner of the room was a huge tussock. I admired it, saying how beautiful tussock was. The patient who had been very quiet, lying flat and looking sad, sat up and talked passionately about the importance of tussock to high country musterers. Its smell, its texture; how each man and dog found a clump to rest in after lunch. You could see the spiritual connections unfolding, to mountains, to loved companions, to dogs and sheep, to the earth and to a son who had thought of bringing it in. The dance of connections lit up the room for both of us.
The final task for those dying is letting go. As might be expected this is not a one way process for carers and family also have to let go. Sudden death makes letting go very difficult because there is no opportunity to say goodbye. Having time to say goodbye certainly seems to make grieving a smoother process.
For the carer, it is letting go of the person cared for. For some it may also involve letting go of wishing to fix the other person's suffering. The wish to avoid suffering seems to be a strong motivator for suggesting assisted suicide for some people.
Care of the carer
It is very important that spiritual care is practiced by caregivers. There are many ways of nurturing spirituality. Taking time to be is the most important. This is needed for reflection and connecting with others, the natural world and the transcendent. Having a creative activity also seems to nurture the spirit. Prayer and rituals may also be spiritually nurturing. These may be simple lighting of candles or playing gentle music.
The human paradox is being born yet knowing we will die. Facing this sends all people on a lifelong spiritual journey. Dying in our culture is usually seen as a bad thing. Yet we are all going to die. Our western culture tries hard to ignore this paradox. Scientific medicine colludes in this illusion by promoting the idea that medicine is primarily about cure. Cure is the removal of disease by medical or surgical means. It focuses on the pathology of individual organs, systems and people. This means that death is seen as failure and so is difficult to talk about.
The angriest patients I saw whilst working in a hospice were those who had been told at the hospital "There is nothing more we can do here for this disease." When doctors focus only on cure, patients feel abandoned when cure is not possible. There is a conspiracy of silence that interferes with good conversation about the hopes and desires of people when they are moving towards death.
To die well is a healing event for the person, family and friends. In order to do this the dying person and their family need healing. Healing finds new meaning, reconnection, and reintegration with family and community. Families need to be well supported, told the truth about what is happening and the possible time frame. They need to forgive and be forgiven, to remember their life together with joy and thankfulness. Death may then become the final stage of growth.
Anna Holmes PhD MB ChB, a General Practitioner for forty years has worked in palliative care for the last ten years. A lifelong interest in the interface between spirituality, health and healing was completed by a PhD Embracing the Paradox: Spiritual Issues in General Practice.
Editorial - The Euthanasia Debate: ‘Play the ball and not the man’
In response to a report on recent comments made by me about the dangers of legalising euthanasia, two people wrote: "I am sick of the religious trying to force their narrow views on society." "Dictate what you like to your own flock, stay the hell out of the affairs of people who want nothing to do with your beliefs." It's a classic case of 'playing the man instead of the ball', discounting my message because of my religious beliefs.
The point being made by these commenters is that religion should have nothing to do with the debate about euthanasia. In response I would say that this is a debate for the whole community. Nevertheless, while Christians have as much right to express their views as any other New Zealander, I do agree that religions should not dictate the content of the law.
I am not interested in imposing my religious views on anyone, and with respect to euthanasia, my personal view is irrelevant. Whether or not people are personally in favour of, or opposed to, euthanasia is ultimately beside the point. To ask this question, as a recent Sunday Star Times poll did, is to ask the wrong question.
The reasons people choose euthanasia are generally based on a fear of suffering, lack of adequate care and social isolation. Promoters of euthanasia suggest that many people die in great physical pain. This is not so if they accept and can access good palliative care. Control of physical and psychological pain has become much more effective in the last thirty years. People rightly want to have choices when they are dying. They wish to feel in control and most often want to die at home. These needs can be met in a holistic and safe way through good advance care planning and comprehensive palliative care.
Having the freedom to choose euthanasia is also about control, specifically control over the timing of one's death. However, the crucial question with respect to euthanasia is whether it can be safely implemented. Maryan Street, MP, glibly asserts that it can while ignoring overseas evidence that says otherwise. I, along with many other New Zealanders, believe differently. Our argument is not religious. It's about the safety and protection of the vulnerable. We need to consider the argument in a rational manner.
The reality of the dangers of euthanasia is readily acknowledged by those wanting to legalise it. It explains why emphasis is placed on building in so-called safeguards. It has also been admitted by Maryan Street in a public debate that no amount of safeguards can stop the law being abused. They simply fail to meet the real world test.
I recently met Sean Davison who was convicted of assisting in the suicide of his mother. He strikes me as a genuine warm person who had the courage to follow his beliefs. It is apparent he thought long and hard about his action. But there will no longer be any need for the same degree of soul-searching if euthanasia were to become legal. It will become relatively easy for people to succumb to more base motives. Legalising euthanasia is fraught with possibilities of abuse for those who are elderly, disabled or dying. These abuses will be easily disguised and hard to identify or prove.
In addition, ours is a society that is increasingly elderly, with growing pressure on health care resources for expensive care. Legalising euthanasia will contribute to those who are nearing the end of life or disabled feeling they are a burden. It is what one commentator has called "the distant and off-handed dismissal of the quality of life of certain people." No law can offer safeguards against this. The right to die will quickly become the duty to die.
Modern living is increasingly busy and elder abuse is an increasing problem. We should not underestimate the subtle ways, conscious and unconscious, families have of putting pressure on their relatives to relieve their burden of care – both emotional and financial. Those working with the dying know this only too well. The very act of making euthanasia legal will remove the most effective barrier we currently have against such abuses.
Such pressures might not matter for a handful of strong-minded people firmly resolved to end their lives. But most people at the end of life aren't like that. They are vulnerable and ambivalent, wavering between hopelessness and hope and worrying about becoming a burden. In which case, large numbers of people may well find themselves on a course about which they are less than whole-hearted but one to which they can see no other alternative.
This is not free choice but a lack of choice. Legalising euthanasia will end up being an illusory choice for far greater numbers of persons than the few who will ever choose to exercise a legal right to be killed.
It is the role of the law in a democratic society to ensure the interests of the majority are not prejudiced by choices granted to a few.
John Kleinsman is Director of The Nathaniel Centre
Guides for people considering their future health care
Catholic Health Australia has prepared a guide for people considering their future health care needs as well as a guide for health care professionals. The guide is described as being consistent with Catholic principles as well as with good secular ethics.
The documents have been approved by the Committee for Doctrine and Morals of the Australian Catholic Bishops' Conference.
The guide for people considering their future health care provides a model statement along with a commentary designed to inform them of the issues that need to be taken into account and assist them with their planning.
The document notes, in particular: "Given the continuing debates over euthanasia and the withdrawal of medical treatment, it is important to state explicitly that you do want life-sustaining treatment that is reasonable to be provided unless it becomes futile or overly burdensome."
These guides can be accessed from the Catholic Health Australia website
The National Advance Care Planning Cooperative (New Zealand) has also produced a comprehensive guide for the New Zealand health care workforce on Advance Care Planning.
The guide notes that while effective Advance Care Planning does not necessarily require a written advance directive, "there is no doubt ... that a documented advance directive or advance Catholic Health Australia has prepared a guide for people considering their future health care needs as well as a guide for health care professionals. The guide is described as being consistent with Catholic principles as well as with good secular ethics.
The documents have been approved by the Committee for Doctrine and Morals of the Australian Catholic Bishops' Conference.
The guide for people considering their future health care provides a model statement along with a commentary designed to inform them of the issues that need to be taken into account and assist them with their planning.
The document notes, in particular: "Given the continuing debates over euthanasia and the withdrawal of medical treatment, it is important to state explicitly that you do want life-sustaining treatment that is reasonable to be provided unless it becomes futile or overly burdensome."
These guides can be accessed from the Catholic Health Australia website:
The National Advance Care Planning Cooperative (New Zealand) has also produced a comprehensive guide for the New Zealand health care workforce on Advance Care Planning.
The guide notes that while effective Advance Care Planning does not necessarily require a written advance directive, "there is no doubt ... that a documented advance directive or advance care plan arising from a well-informed discussion involving both the individual and the health care professional(s) is more likely to meet the criteria for validity than an unrecorded oral directive or plan, or an advance directive drafted either by the individual on their own or as a legal document in isolation from health care professionals."
The workforce guide also notes: "In the New Zealand context it is likely but as yet legally untested that a written advance care plan would constitute an advance directive for legal purposes." For this document go to: http://www.moh.govt.nz/moh.nsf/indexmh/advance-care-planning-aug11
A resource aimed specifically at consumers (both patients and their families/whanau) has been produced to complement this document. See: www.advancecareplanning.org.nz.
care plan arising from a well-informed discussion involving both the individual and the health care professional(s) is more likely to meet the criteria for validity than an unrecorded oral directive or plan, or an advance directive drafted either by the individual on their own or as a legal document in isolation from health care professionals."
The workforce guide also notes: "In the New Zealand context it is likely but as yet legally untested that a written advance care plan would constitute an advance directive for legal purposes." For this document go to: http://www.moh.govt.nz/moh.nsf/indexmh/advance-care-planning-aug11
A resource aimed specifically at consumers (both patients and their families/whanau) has been produced to complement this document. See: www.advancecareplanning.org.nz.
Advance Directives: A view from the office of the Health and Disability Commissioner
From time to time tensions may arise when patients or their families either request a treatment that is deemed to be clinically inappropriate or when they wish to refuse a treatment that is clinically appropriate and which is commensurate with a health professional's duty to provide the necessaries of life.
In light of recent increased interest in the question of Advance Directives, the Office of the Health and Disability Commissioner has provided the following article which describes the current legal situation in New Zealand.
The Code of Health and Disability Services Consumers' Rights (the Code) is of particular relevance to advancing illness and end of life care as it recognises key patient rights, such as the right to dignity and independence; the right to services provided in a manner that optimises the patient's quality of care; the right to continuity of care and the right to open and honest discussion about the patient's conditions and options for care. The situations in which life prolonging treatment may be withheld or withdrawn differ according to whether the treatment is, or is not, clinically appropriate.
Treatment clinically appropriate
A provider may decide that non-treatment or withdrawal of treatment is clinically appropriate, for example if the treatment is futile and is causing suffering. If the withdrawal of life prolonging treatment is in keeping with good medical practice, the providers responsible have a lawful excuse for not providing treatment. With regard to a decision to withdraw life support, the High Court has defined 'good medical practice' as requiring:
• A decision in good faith that withdrawal of the life support system was in the best interests of the patient.
• Conformity with prevailing medical standards and with practices, procedures and traditions commanding general approval within the medical profession.
• Consultation with appropriate medical specialists and the medical profession's registered ethical body.
• The fully informed consent of the family.
However, in a later case, the Court of Appeal decided that the consent of the family was not required for the provision of treatment to or the withdrawal of treatment from an incompetent patient. The provider is only required to undertake reasonable consultation and then take into account the views of the family. If the decision raises significant ethical issues, rather than issues of clinical judgment, then Ethics Committee consultation and approval may still be required.
Right 7(4) of the Code provides that if a person is not competent and there is no one entitled to consent on their behalf, the provider may provide services where it is in the best interests of the patient. Reasonable steps must be taken to ascertain the patient's views and the steps taken must be consistent with what the patient would have wanted if they were competent. If the patient's views are not known, the provider may take into account the views of available persons who are interested in the person's welfare. In such a case, following consultation, the decision about provision or withdrawal of treatment is made by the provider in the best interests of the patient.
An advance directive can only be made by a competent person regarding his or her own future treatment. It must be intended to be effective when the person becomes incompetent. An advance directive does not have any effect while the person is competent. Right 7(5) of the Code provides 'every consumer may make an advance directive in accordance with the common law'.
Advance directives enable patients to indicate in advance their objection to or prohibition of the provision of treatment which would otherwise be provided. They may also specify the type of treatment they would wish to undergo should they become incompetent.
Advance directives do not have to be in any particular form and do not have to be in writing. However, advance directives may fail because the intention was unclear. If a valid advance directive exists the directions must be respected as it is legally binding. The right to refuse medical treatment is so fundamental that it is recognised in the New Zealand Bill of Rights Act 1990 (section 11). An advance directive may also be used to express a preference about which of two viable treatment options are to be supplied.
An advance directive refusing future treatment can excuse health professionals from providing treatment which they would otherwise be under a duty to provide. Advance directives can make the provision of such treatment unlawful.
Do Not Resuscitate Orders
A 'Do Not Resuscitate' order (DNR order) is a form of advance directive. A competent person can direct that should they suffer a medical event in which cardiopulmonary resuscitation (CPR) is clinically appropriate, they do not wish such resuscitation to be provided. This is a limited form of advance directive and does not refer to any other life prolonging treatment that might be required.
CPR is not generally clinically appropriate where it is considered futile or medically contraindicated. Resuscitation is a medical issue for the doctor responsible for the patient's care and if resuscitation is not clinically appropriate it should not be provided. If a doctor decides that future resuscitation of the patient is not clinically indicated, the doctor may put a non-resuscitation order in place as part of the patient's overall future care plan. In such situations the doctor should discuss the decision with the patient and/or suitable persons who are interested in the welfare of the patient.
It is important to note that a patient's enduring power of attorney, welfare guardian or family members are not able to refuse clinically indicated CPR or any other clinically indicated treatment.
An advance directive is a written or oral directive made by a competent person about their future care. A DNR order is a type of advance directive. A patient is entitled to refuse treatment and may do so by way of an advance directive made prior to becoming incompetent or a competent patient may refuse consent at the time of treatment. An attorney appointed under enduring power of attorney or a welfare guardian may not refuse consent to standard medical treatment or any procedure intended to save the patient's life or prevent serious damage to their health. Family members who have not been appointed as the patient's enduring power of attorney or welfare guardian do not have the power to consent to, or refuse treatment, although clinicians should consult the family when making decisions under Right 7(4) of the Code.
Dr Cordelia Thomas is the Specialist Senior Legal Advisor for the Office of the Health and Disability Commissioner
1Auckland Area Health Board v Attorney General  1 NZLR 235 (HC).
2 Shortland v Northland Health Limited  1 NZLR 433 (CA). 3 Sometimes referred to as a 'living will' this is a written or oral directive by which a person makes a choice about a possible future health care procedure. 4 Code of Rights Clause 4.
2 Shortland v Northland Health Limited  1 NZLR 433 (CA).
3 Sometimes referred to as a 'living will' this is a written or oral directive by which a person makes a choice about a possible future health care procedure.
4 Code of Rights Clause 4.
The Last Word - The Catholic case for advance directives
Daniel P Sulmasy
Out of fear that euthanasia and assisted suicide may be legalized, some Catholic commentators have raised questions about the ethics of advance directives for medical decisions. They have almost made it seem as if such documents are intrinsically tied to the "culture of death" and ought to be avoided by faithful Catholics. This is a mistaken view.
An advance directive is a document, like a living will or durable power of attorney for health care, by which a person provides guidance for others who may be called upon to make medical decisions on behalf of the issuer of the directive if he or she is unable to do so.
Like any good thing, advance directives are susceptible to abuse, but they are not intrinsically connected with euthanasia. Although not a panacea, they can be very useful. Advance directives should be viewed by Catholic Christians as tools to help families and physicians make good decisions about patients who cannot speak for themselves at the end of life. They fit squarely within the Catholic tradition of forgoing extraordinary means of care, a tradition that springs from four natural law principles that can be held independent of any faith commitments.
The first principle is the dignity of the human person. Each individual, by virtue of being human, has an intrinsic value Catholics call dignity. This is the fundamental principle of all interpersonal morality. Medicine reaches out to the sick first and foremost because each person has an intrinsic dignity.
The second principle is the duty to preserve life. This duty, while not absolute, is based on natural instincts, gratitude for the gift of life and duties to fulfill responsibilities toward others.
The third principle is the fact of finitude. Human beings are finite. People get sick; they die. Medicine is a finite craft, and all patients ultimately die. Individual and collective resources are also finite.
The fourth principle is the diversity of the human. Individuals are different from each other in all sorts of ways. Decisions must take into account the uniqueness of each case.
Suicide and euthanasia are considered immoral because they violate the dignity of the person and undermine the duty to preserve life, which can never be made consistent with a direct intention to eliminate life. Western moral thinking, however, has always recognized the fact of finitude. The duty to preserve life, therefore, is limited. Hippocrates does not counsel physicians to keep treating patients to the bitter end. Rather, he urges physicians not to treat those who are "overmastered" by disease, recognizing that "in such cases medicine is powerless." Today, it is recognized that even with the most sophisticated technology, doctors cannot keep patients alive forever.
It is from these principles, simultaneously affirming the dignity of the human person and human finitude, that the moral tradition of forgoing extraordinary means of care arose. To say that an intervention is extraordinary signifies that its use is optional—that one need not use it. One should not be confused by the use of the words ordinary and extraordinary in everyday speech. Extraordinary is used here as a technical term meaning non-obligatory, and ordinary is used to mean obligatory.
By tradition, an intervention is deemed extraordinary if it is futile, that is, if it will not work (will not cure the patient, reverse the condition or appreciably forestall an imminent death) or if the burdens imposed by the intervention—physically, psychologically, socially, economically, morally and spiritually—outweigh the benefits. By tradition, one does not focus on the intervention itself, a priori, divorced from a case. The adjectives ordinary and extraordinary modify one's duty to use an intervention; they do not modify machines or treatments. That means one can never say, "This treatment is always ordinary," or "That treatment is always extraordinary."
In keeping with the principle of diversity, these judgments always depend upon the circumstances. So, for example, one can never say, "Ventilators are extraordinary and antibiotics are ordinary." Surgery for a ruptured appendix, for instance, might require a ventilator. Other things being equal, the duty to use a ventilator would be ordinary in such circumstances. But in the case of pneumonia in a patient with untreatable metastatic or widespread cancer, a ventilator might not appreciably forestall an imminent death. Even if not strictly futile, the burdens could certainly be judged to outweigh the benefits and so the duty to use the very same machine, a ventilator, would be extraordinary in such circumstances. Even antibiotics could be considered an extraordinary means in such a case. Since antibiotics would preserve the patient's life perhaps a few hours or days, in this case even the burden of being stuck with a needle could be judged to outweigh the benefits. In such circumstances, the duty to use antibiotics would be morally optional. No intervention can be judged ordinary or extraordinary apart from the circumstances.
The Patient's Perspective
The Catholic tradition of forgoing extraordinary means of care has always examined these cases from the perspective of the patient, asking only whether it would be reasonable, in the patient's circumstances and in the patient's judgment, to forgo the intervention. The perspective is not that of the physician or the family in light of their duties toward the patient, but is instead that of the patient who has a duty to preserve his or her own life. The patient traditionally has been given wide latitude in deciding what is extraordinary, within the bounds of reason and the judgment of the community. The limits are broadly drawn, not because of any notion of unrestrained autonomy, but because of the fact of diversity. People do, in fact, differ. They have different pain thresholds. They react differently to the same medicine. They have differing psychological, social, economic, moral and spiritual resources. No one understands this as well as the patient.
Thus, if a patient had lymphoma, a type of cancer, and had failed five treatments, all with terrible side effects, and the oncologist were to offer a sixth treatment, a patient might well judge this to be too much to ask—an extraordinary treatment. Another patient with the same lymphoma, having failed the same five treatments, although without such bad side effects, who might be looking forward to a daughter's marriage in two months' time, might consider the treatment worthwhile. It would depend upon each of them as individuals, not upon judgments about chemotherapy abstracted (a priori) from the individual's case.
If a patient becomes unable to think or communicate, treatment decisions have rested not with the physician, but with the family. The traditional moral viewpoint assumed by the family was always that of the patient. "Knowing our son," or "knowing my wife," these burdens are too great relative to the benefits. This is natural. This is traditional. The family knows the patient better than the physician does.
Relieving the Burden
Advance directives help put the focus back where it should be—where families, friends, pastors, physicians and the law all should have their focus—squarely on the patient. In the 21st century, advance directives have become useful instruments for carrying out traditional morality. This is primarily because so many people now die after they have already lost their decision-making capacity. Because of medical successes against cancer and heart disease, more people will live long enough to succumb to Alzheimer's disease, for example. People who used to be dead within hours from septic shock can now survive in intensive care units. But this success comes at a price. While some will survive, most will still die after having spent weeks on life support, unable to speak for themselves. Studies have shown that as much as 86 percent of the time, judgments to forgo cardiopulmonary resuscitation are made when the patient cannot participate in the decision. There is almost a moral imperative for people, realizing that they very well might die in a state of mental incapacity and aware that each is the best judge of his or her own limits, to execute advance directives in order to assist those who will make decisions for them.
The second reason to reconsider the value of advance directives is the power of medical technology. An advance directive is not an arcane abstraction. With so many possible treatments, studies now demonstrate that approximately 90 percent of hospitalized patients die after a decision to forgo a procedure that could have been tried. One of the burdens of contemporary medical technology accompanying its many benefits is the responsibility for deciding when not to use it. Otherwise people will become prisoners of technology.
The third reason is the great weight that falls upon loved ones. Studies have shown that making these decisions is exceedingly stressful for families—equivalent to the stress of having survived a house fire or other calamity. These studies also show that when a patient has filled out an advance directive, the stress levels of loved ones are significantly lower.
Fourth, increasing numbers of persons have no families to make decisions for them as they are dying. Sometimes this is caused by social ills—drug addiction, broken families and the like. Sometimes this is because women outlive all the persons for whom they had cared over most of their lives, dwell alone and have no one they would trust to make decisions for them. How else are decisions to be made for such persons?
Finally, families sometimes are unable to agree on decisions at the end of life. The dying process can expose old family wounds; and the consequence is, as a default, the continuation of life-sustaining treatment. That decision might not be what the patient would have wanted. It might not be what the physician thinks is in the patient's best interests. It might not be what most of the family thinks is right. But without some way to resolve the dispute short of recourse to the courts (always a bad idea), the treatment continues because the alternative is irreversible. Advance directives can provide a simple way of settling such disputes.
Preference for a Proxy
How do these instruments work in practice? There are two basic types of advance directives—the living will and the durable power of attorney for health care (or health care proxy). Briefly, a living will lists the patient's preferences for or against certain treatments at the end of life and goes into effect if one is terminally ill and lacking in decision-making capacity. The health care proxy names a person (and generally an alternate) to whom the physicians should turn for medical decisions in the event that the patient is unable to make them. Some documents combine elements of both. Forms can be obtained from physicians' offices, state government Web sites, hospitals and lawyers. Lawyers are not necessary, however. All one needs, typically, is for two persons to sign an attestation that the person making the directive was in a rational state of mind at the time the document was executed.
Advance directives are not a panacea for the complexity of end-of-life decisions. People often hesitate to fill them out, and most Americans die without them. Living wills can be too vague or too specific, and these documents, which are written texts, are as such subject to interpretation. Most patients would opt to give their loved ones substantial authority to interpret their documents and even to override their preferences, because they trust their families to act out of love. Thus the health care proxy form is the overwhelming preference of ethicists and clinicians. It is much easier for them to talk to a person who knows the patient and has been selected by the patient than it is to try to interpret a piece of paper. Catholics who are wary that their documents could be abused and their religious beliefs ignored would be best served by designating a health care proxy as they prepare their advance directives. But even this important role has its limits: Patients frequently fail to discuss their wishes with the person they appoint as proxy, and studies have shown that proxies are often inaccurate in predicting patient wishes.
Some faithful Catholics might worry that recent changes in church teaching regarding the use of feeding tubes for persons suffering from devastating neurological conditions, like the persistent vegetative state, will require them to alter their existing advance directives or to avoid using advance directives altogether. Recent church teaching, however, emphatically has not altered the centuries-old Catholic tradition of forgoing extraordinary means of care. Feeding tubes can still be considered extraordinary (i.e., optional) for patients who are dying of progressive underlying conditions like cancer or advanced dementia or if the use of the tube is associated with great burdens or costs. To try to specify in a living will all the nuances of Catholic teaching about feeding tubes would do more harm than good by creating a complicated and confusing text that others would later have to interpret. This is just another reason for preferring a health care proxy. Then one needs only to instruct one's proxy to decide on one's behalf in accord with church teaching.
Despite their limitations, advance directives provide an important means to accomplish the goals of the tradition of forgoing extraordinary means. Advance directives foster decision-making by those who know and love the incapacitated patient that is focused on the authentic values and real interests of the dying patient. Such decisions would constitute good care, recognizing both the dignity and the finitude of the human person, affirming the value of life but conscious that our ultimate destiny is eternal, not temporal.
Advance directive: a document, like a living will or durable power of attorney for health care, that enables a person to provide guidance for others who may need to make medical decisions on that person's behalf in the event that the author of the directive loses the capacity to make decisions.
Living will: a listing of the patient's preferences for or against specific treatments at the end of life, which goes into effect if one is terminally ill and lacking in decision-making capacity.
Durable power of attorney (health care proxy): a document that names a person (and usually also an alternate) to whom physicians should turn for medical decisions in the event that the patient is unable to make decisions.
Extraordinary means: a technical term in ethics that means non-obligatory; the use of extraordinary means is optional.
Ordinary means: a technical term in ethics that means obligatory.
Daniel P Sulmasy, M.D., is the Kilbride-Clinton Professor of Medicine and Ethics in the Department of Medicine and Divinity School at the University of Chicago, where he is associate director of the MacLean Center for Clinical Medical Ethics. He is the author of Methods in Medical Ethics (Georgetown University Press).
Reprinted from America 29 November, 2010 with permission of America Press, Inc., © 2010. All rights reserved.
Why the elderly should fear euthanasia
The proposal that euthanasia and/or physician assisted suicide (PAS) should be legalised targets older people. The reason is not hard to find: people at that end of the age spectrum are beginning to realise that their lives are not infinite. Generally speaking, people fear the process of dying more than death itself. Hence there is a ready audience for the line that older people have the most to gain from legalising these practices. It is ironic, however, that the very people who are the main supporters of legalised euthanasia or PAS have the most to fear from it. What should they fear?
1. They should fear being groomed for a death they really don't want
As a practicing geriatrician I heard time and again, older people telling me that they "didn't want be a burden." Most were not terminally ill: just sensitive to a society that tends to regard its older population as a burden, and therefore likely to accede to even subtle suggestions that they have 'had a good innings.' Dutch statistics show that more than 30% of people requesting euthanasia do so on grounds including not wishing to be 'a burden'. Is that really freedom of choice? The elderly are not the only ones susceptible to this. Doctor Richard Fenigsen reported that in Holland, when Parliament was first considering making euthanasia legal, a group of handicapped adults wrote as follows to the Parliamentary Committee for Health Care and Justice:
"We feel our lives threatened...We realise that we cost the community a lot...Many people think we are useless...Often we notice that we are being talked into desiring death...We will find it extremely dangerous and frightening if the new medical legislation includes euthanasia."
For many older people, the source of the pressure of being thought a 'burden' is their family; younger members feeling thwarted because they are unable to access their older relative's resources, burdensome care-giving or soured family relationships may all contribute. Those of us who work in the sector are regularly faced with such issues.
2. They should fear becoming the victims of death by euthanasia without their consent
Older people almost inevitably at some point cede control of their environment to others and are therefore at risk from those health professionals and others who assume that control and have the power to harm them - including killing them without their informed consent. In Holland the practice has moved rapidly from euthanasia on request (legal) to euthanasia of people who could not, or if they could have, did not, request it. Older people are the majority of victims. In Holland and Belgium many more people suffer the ultimate loss of dignity by being euthanased without their consent than are euthanased on request. If euthanasia were to be legalised, older people would assuredly discover that a minority's fear of dying is replaced by a majority fear of being killed without their consent - with the noblest intentions of course. Psychiatry Professor Herbert Hendin of New York, after personally investigating the practice of euthanasia in Holland, concluded that guidelines established by the Dutch for the practice of assisted suicide and euthanasia were consistently violated and could not be enforced. The most important thing we can learn from the Dutch experience over 30 years is that the practice of euthanasia cannot be controlled by legislation.
3. They should be afraid of an unnecessary end by euthanasia because of incorrect diagnosis or prognosis
As we age, we are increasingly afflicted by disease. It is well recognised that all diagnoses, even in these days of advanced technology, are a matter of probability. That is, there is a chance that the diagnosis is not correct. According to Dr. Jerome Groopman , up to 15% of all diagnoses are incorrect. Clearly, the more diseases one has, the greater the likelihood that at least one diagnosis is incorrect. On average 33% of people aged 65 and over have three or more longstanding diseases requiring treatment. The older one gets, the greater the number of such disorders. The annals of medicine abound with incorrect diagnoses and erroneous predictions of immanent death. There are many records of people being euthanased where autopsies subsequently showed no evidence of fatal disease. In a recent Listener article, the first-hand account of a woman who recovered from a severe episode of blood poisoning included the following words highlighted by the editor: "I had always had an ambivalent attitude to voluntary euthanasia, but to my shock, I found myself vividly understanding the arguments in its favour". But consider: had her illness been in Holland, where euthanasia is legal, and had she expressed such sentiments to her doctors, she might well have been voluntarily euthanased; in which case she would not have been here to tell her story.
Older New Zealanders have to realise that if they allow legislation to pass so that euthanasia and/or PAS become legitimate components of therapy, in thinking that they have seized control over their life's end they will discover too late that they have actually lost it.
Emeritus Professor David Richmond was the Inaugural Masonic Professor of Geriatric Medicine and is the Founder and Chairman of the HOPE Foundation for Research on Ageing
1 Fenigsen R. A case against Dutch euthanasia. Ethics and Medicine 1990: 6: 11 – 18. 2 Hendin H. Commentary. The case against physician- assisted suicide – For the right to end of life care. Psych. Times, Vol XXI #2, February 2004. 3 Groopman, J.E. How Doctors Think. Mariner Press 2008 4 Melbourne Herald Sun 27 May 2002 5 The Listener, February 19 – 25 2011, pages 26 – 28.
1 Fenigsen R. A case against Dutch euthanasia. Ethics and Medicine 1990: 6: 11 – 18.
2 Hendin H. Commentary. The case against physician- assisted suicide – For the right to end of life care. Psych. Times, Vol XXI #2, February 2004.
3 Groopman, J.E. How Doctors Think. Mariner Press 2008
4 Melbourne Herald Sun 27 May 2002
5 The Listener, February 19 – 25 2011, pages 26 – 28.
“Every moment is an opportunity for greatness” (A Heschel)
Sometimes at lunchtime, when I am tired and hungry, I can be irritable. So it is not the best time as a palliative medicine doctor to meet a new patient.
This day, however, I did not take my own advice and with my nurse colleague, Marion, I arrive on a busy ward to meet Mr Murphy as he slowly gets down off a hospital trolley following his procedure.
'Thank God I waited patiently for his hearing aid.
Thank God I waited for the student nurse to find his hearing aid in the orange box.
Thank God we noticed the glint in his eyes – "the twinkle" Marion called it.
Thank God we admired him being married five years at eighty eight;
to Sophie – he stressed "Sophia" as the correct pronunciation; "She is particular about that."
Thank God we stayed around waiting to meet him
as he slowly got off the trolley with plasma infusing after endoscopy.
Thank God I was kind to him.
Because suddenly two hours later he died.'
Dr Sinéad Donnelly M.D. is from Ireland working as a palliative medicine physician at Wellington Regional Hospital.
Baroness Ilora Finlay is a doctor, professor of palliative medicine at Cardiff University and an independent crossbench member of the House of Lords. She explains to Michael Fitzsimons how her opposition to euthanasia is not on religious grounds, but entirely a matter of public safety.
The Role of Palliative Care
A 76 year old man comes to you. He has prostate cancer. The cancer has spread to his bones. Hr has pain, weakness and loss of appetite. “Look at me” he says “I could do everything once, now I can do practically nothing. My wife is struggling. The doctors have tried all their treatment. It’s no use. I don’t want to live any more. I want to die. What can you do?”
Those who favour and those who disagree with euthanasia start at a common point – the simple acknowledgement of human suffering. Our point of commencement is the same. Our destination is completely different.
What is ‘palliative care’’? To the lay public and indeed to many health professionals there is probably no discipline so enshrouded in mystery and misconception. Yes, I could read to you a technical definition of palliative care but perhaps the best definition I know came not from a doctor, but a lay person and not someone who experienced it but one who regretted he did not. In 2007 Bruce Dawe, the Australian poet, wrote this poem:
White-Water Rafting and Palliative Care i
If I had understood (when down the river you and I went swirling in that boat)
that there were those who knew the ways of water
and how to use the oars to keep afloat.
I might have been less deafened by the worry,
less stunned by thoughts of what lay up ahead
(the rocks, the darkness threatening to capsize daily),
if I had only realised instead
that help was all around me for the asking.
I never asked, and therefore never knew
that such additional comfort could have helped me
in turn to be more help in comforting you.
I’d have found it easier then to simply hold you
Instead of bobbing to and fro so much,
for it was you who seemed to be more tranquil
and I whom death was reaching out to touch.
If only I had had sufficient knowledge
in that white-water rafting I’d have learned
that there were those around us (with life jackets)
to whom I might have, in that turmoil, turned.
Instead, because I had not thought of rivers,
or rocks, or rapids, and gave way to fears
that seeking help might make a man less manly
and liable to betray himself with tears,
I was less useful then, as twilight deepened,
than I might well have been, had I but known:
however wild the waves that roll around us
no one needs to live (or die) alone…
When then is the difference between palliative care and euthanasia? Palliative care is the concerted endeavour to control pain and other symptoms, to support the patient and the family through this time which is simultaneously challenging and precious and to allow death, when it comes, to be dignified and loving. Note I said endeavour for we cannot guarantee perfection. To be the ones who ‘know the ways of water’. Euthanasia is the deliberate act to cease the life of a patient who is suffering with a serious illness. So when I said our destinations are completely different it is true. One is palliative, the other is obliterative.
There are many myths here. That palliative care is a form of euthanasia. It is not. That withholding or withdrawing treatment is a form of euthanasia. That is a myth. Let me give you an example. An elderly patient with a serious illness affecting her bone marrow such that they cannot make any blood themselves. She is now more reliant on blood transfusions and even they, with time are having less effect. The decision is made between the doctor, the patient and her family to cease the blood transfusions and allow the natural process of dying from the underlying disease to progress. That is withdrawing of treatment. It is not euthanasia. It is simply an appropriate and ethical response to her condition. Yes, in modern medicine we can do many things but we need to recognise a simple and incontrovertible truth – we are all mortal. An 82 year old man with very poor kidney function meets with his kidney specialist. The decision is made not to commence dialysis. This is withholding treatment. It is not euthanasia. Sadly too often patients and families worry it is. ‘’Are we doing the right thing?’’ they ask.
Other myths that abound concern morphine. The first is that prescribing morphine, irrespective of the dose given, is a form of euthanasia. The second is that toward the end of a person’s life the standard of care is to increase opioid doses independent of the pain of the patient. Neither are true. The important consideration here is proportionality. The standard of care is to give morphine proportional to the pain or sedation proportionate to the level of agitation. As Ashby stated ‘’…opioids and sedative drugs can be used quite safely for symptom control without bringing causation into question if the parameters of accepted practice are followed.’’ ii
The difficulty here is one of education. Generations of doctors have graduated with little or no training in pain management, palliative care or the care of the dying patient. Generations of doctors have graduated with no or very limited training in the safe use of opioids. And so we have reaped a bitter harvest of doctors who have both opiophobia and opioignorance. But is it more than that? As Kelly wrote: ‘’To what extent is the issue of assisted suicide or euthanasia symptomatic of the failure to equip doctors with better skills in the care of the dying…? The reactions of doctors tell us less about the appropriateness of euthanasia…than they do about how troubled and problematic the medical responses to a dying patient can be – a ‘’symptom’’ of the problem modern medicine has with dying rather than the solution.’’ iii
How can I reply to him?
How can I reply to the man described above at the opening of this paper? I will sit with him and ask him what troubles him. Is he troubled by symptoms such as pain and nausea? Is it fear of what may occur later, closer to his death? Is he depressed? Is it exasperation about the current situation? Is he worried that he is going to become a progressively greater burden on his family? I will explore but I will never judge. To health professionals working in palliative care this question, or a more explicit request for euthanasia, is a welcome one as it invariably opens u the inner anguish and fears of the patient. It should never be a moment of censure; it is always a moment of liberation.
If a doctor stands with the patient on that precipice where all they can both see is suffering then that would be one thing. We would stand there, mute witnesses to their suffering. Too often the euthanasia debate is characterised as a simple choice between suffering and death. It would be completely understandable if a patient choose death. But that choice is a false choice, a dichotomy that is blind to a third approach – it is blind to the enormous advances made over many decades in actively dealing with the constituent parts of the suffering of human beings in illness – physical, yes, but also the emotional and the spiritual.
Firstly is the patient depressed? That is a very important first enquiry because that can so cloud the mind and we have treatment for that. The patient may not be depressed but feels he/she have lost all hope. Hope is intrinsic to us as human beings. So with serious, progressive disease what can we say to our patients? Wherein lies hope? In the face of this what could possibly be said? It may start with a simple acknowledgment to the patient of the truth. It may slowly reset the focus of care. It may broaden the plane of hope to something that is at once obvious but also, if never said before, a revelation. At this point what the doctor says and how it is said may extend the vision of hope. In simple terms we may say to the patient words to the effect:
Let us look at things clearly. Despite all that we have done together, despite your greatest efforts we have come to a point where there is no hope for cure. We know that. But there are different forms of hope and while there is no hope for cure there is clear hope that you will be comfortable and supported throughout. That you will not be abandoned. That you will always be listened to. That your symptoms will be treated to the best of our ability. That you will not needlessly suffer. And that you will be treated with respect and dignity at all times.
Therein lies the hope. Hope redefined may be hope reaffirmed.
The other issue is dignity. Perhaps the patient feels that they have been stripped of everything, including their dignity. ‘’Look at me – I can’t do anything – I’ve “lost all my dignity.’’ What I say to them are words to the effect: ‘’This disease has done many things to you and it will continue to do so…But what it cannot do is take away who you are, your core, your history, the good things that you have done in your life…They are untouchable.’’ I look beyond the external sense of dignity to the internal or inherent. That sense of dignity has a long antecedence and, indeed, is the foundation of the international human rights documents that emerged after the cataclysmic events of World War II:
Whereas the recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world. iv
Chochinov and his group have published widely on the concept of dignity at the end of life. For those patients describing a collapse of their sense of dignity, some of whom requesting an active cessation of their life, a simple, though profound, intervention was to interview the patient at length about their life and to have that transcribed record presented to the patient and their families. v
What would a society be like that legalised euthanasia? What deeper changes would be afoot in the society generally and in the medical profession in particular? Would human life, especially vulnerable and ill human life be viewed differently? How would the medical profession respond? Almost by definition it would split the medical profession into those who would participate in euthanasia or physician assisted suicide and those who would not. And if legislation mandated that any doctor who declined to be involved must refer on to another practitioner who would, you would immediately have conscientious objectors. I have no doubt most, if not all, of my colleagues working in palliative care would be amongst them.
Rights based discourse
We often hear the mantra from those supporting euthanasia ‘’It is my right to die with dignity.’’ I do not have trouble with the literal words in that statement. What is problematic is the content of the obligation. If that mantra seriously implies that the only way of dying with dignity is euthanasia then I would seriously disagree. And what of this rights based discourse? Given the paucity of palliative care services around the world, surely as a foundational issue would it not be more productive to argue for a right to palliative care rather than a right to euthanasia? This is precisely the call from the international bodies overseeing my discipline – that the provision of palliative care should be seen as a basic human right. vi One right is solidly built on foundations of international law. vii The other is not. Before the legal debate, let us have the medical debate.
Before concluding, allow me to read a short narrative drawn from my work:
I met her at the main hospital. She had metastatic colorectal cancer. She had received extensive chemotherapy. Her disease had progressed and her options were rapidly diminishing. She was becoming thinner. I talked to her about palliative care and what the Hospice had to offer. She agreed to come over to the Hospice.
Later that week I saw her there. She was in a single room. She lay weakly. The bed covers seemed too big for her. Her mouth was dry. She spoke slowly. After discussing her symptoms I said to her that I thought her time was approaching. She said: ‘’Well…what can I say?’’ I asked her what the hardest aspect of her illness was. She replied: ‘’Leaving my husband.’’
I met Jack twice over the next days. On each occasion, he sat by her bed, speaking as softly as she, his eyes burning with suffering. By the week’s end she had deteriorated further. She was now unrousable and dying. I entered the room. Jack sat, as usual, by her bed, his right hand resting on hers. Next to him was their son. I explained the process of dying and said that I did not think that it would be long. There was a pause. Finally, Jack looked up at me and asked: ‘’Doctor, can’t you give her a needle…?’’
I had heard the question before, from relatives of other patients, at other deathbeds. I knew how the sentence would end. I was ready with an answer. I knew that the sentence would end with a ‘’needle to end her suffering’’ or ‘’a needle to put her out of her misery’’. My answer, prepared and clear would be no, that ethically and legally we can not cause any one to die or hasten their death and that the natural process of one to die or hasten their death and that the natural process of dying, already progressing, would inevitably lead to her death.
But the sentence did not end that way. The sentence ended in a way that was so different, unexpected and on a plane that was so separate from what I anticipated. He completed the sentence by saying ‘’Doctor, can’t you give her a needle to wake her, so that we can speak one last time?’’
I stood there. Silently I reached out my hand to his hand that lay on hers. Three hands. I felt many things. Humbled that my expectations, the grooved furrow of the plough across the field of my working day, was not prepared for this question. That the question itself arose deep from his anguish of loss. That a la person could honestly believe that we could do such a thing – wake a dying patient to speak for one last time. Have we so raised the image of modern medicine that doctors are seen to be capable of the miraculous? And I began to think of language – the language of our patients and their loved ones. And occasionally a comment or question can be both practical and metaphorical, literal and figurative. And how language can rarely capture the exquisite mystery present in the process of dying. Or is it so rare? Maybe we need to be more open to the asides, the whispered thought, the silence that so regularly envelops it all. And finally it reminded me that talk of death is not, nor should ever be clichéd, that every encounter, just like every death, is unique and that our confident anticipation of the content of all encounters rests on a flawed premise. The premise of sameness.
We will be surprised and humbled, moved and challenged. And rightly so.
‘’No,’’ I replied ‘’sadly, there is no such needle. I cannot wake her now. But Jack, talk to her, she’ll know you’re here…Talk to her of everything, everything that is in your heart.’’
Quietly, and in a whisper to match her breathing, he replied: ‘’I’ve been speaking of nothing else.’’
I will make a final point. One of the most powerful reasons articulated in the promotion of euthanasia is self-determination. We are used to control. We want it even, and perhaps especially, at this point in our lives. Our lives, including the most orchestrated, float on a sea of uncertainty. That uncertainty ebbs beneath us. We may imagine we are creatures who think the world into our image. But we are not gods; we are humans, frail and vulnerable. We yearn for certainty. We are met by mystery.
Euthanasia offers certainty. A natural death promises mystery.
Dr Frank Brennan MBBS, FRACP, FAChPM, LLB
Palliative Care Physician
Kogarah, NSW, Australia
This presentation was delivered at The Euthanasia Debate: Why Now? Conference held at Te Papa Museum, Wellington, New Zealand, Friday April 8, 2011
[vi] Joint Declaration and Statement of Commitment on Pain Management and Palliative Care as Human Rights (2008). International Association of Hospice and Palliative Care (IAHPC) and Worldwide Palliative Care Alliance (WPCA).
Ordinary Means Extraordinary Means: A Valid Distinction?
Issue 4, August 2001
A discussion of the distinction between ordinary and extraordinary means of treatment with a consideration of the burdensomeness and the possible benefit of treatment.
"When does palliative care begin?" Notes from a seminar
Early in July 2011 Te Omanga Hospice, in conjunction with several other healthcare providers, hosted its third biannual "Changing Minds Seminar". The focus of these seminars is to explore the palliative care needs of older people living with chronic and life-challenging illnesses. This year's theme considered the question, "When does care become palliative?"
Finding meaning in serious illness and suffering
Rev Kevin McGovern
Issue 32, November 2010
When we experience serious illness, one of our deepest challenges is to make sense of what is happening to us. This article considers how we might do this. It particularly explores John Paul II's Salvifici Doloris, which suggests that Christians might discover meaning by uniting their sufferings with the sufferings of Christ.
The rationale behind the euthanasia argument: is there a right to be killed?
Issue 32, November 2010
People support euthanasia for various reasons. This article will attempt to explore some of the commonly cited reasons used to justify its legalisation.
Euthanasia would hurt doctors and society
Professor Margaret Somerville
We must consider the damage to medicine if physicians are allowed to kill. Physicians' and nurses' absolute rejection of intentionally inflicting death is necessary to maintaining people's and society's trust in their own physicians and the profession of medicine as a whole.
Speaking from the bedside: palliative medicine and euthanasia don't mix
Issue 32, November 2010
The word 'euthanasia' comes from a Greek word literally meaning 'good death'. Everyone supports this concept. But those proposing the legalisation of euthanasia believe that, when requested, the deliberate killing of patients by their doctors is an appropriate way of providing a 'good death'. I disagree with this view.
Editorial: Euthanasia "let's at least have a robust debate!"
Issue 32, November 2010
We all want to protect and promote the dignity of persons at the end of life.
One way of understanding the euthanasia debate is to see it as a disagreement about how best to promote and protect the dignity of persons who are dying.
Bioethics in the News - Dealing with the Alzheimer's "Tsunami"
Alzheimer's disease is an irreversible and progressive brain disease that slowly but inexorably destroys memory, thinking skills, and eventually the ability to carry out the simplest tasks. The staggering growth in persons being diagnosed with Alzheimer's has led many to describe it as a "tsunami in waiting." According to recent statistics one in two Americans in their eighties have this disease, and one in ten over sixty-five. Alzheimer's death rates are up 47 percent since 2000. Alzheimer's is now the sixth leading cause of death in the United States. (See http://www.tikkun.org/article.php/jul_aug_contrarian). While there is no clear understanding of what starts the disease process, it is known that damage to the brain begins 10 to 20 years before any problems become evident.
The Liverpool Care Pathway for the Dying Patient (LCP) in New Zealand
Issue 31, August 2010
Care of the dying is urgent care. We only get one opportunity to get it right.
The modern hospice movement was championed by Dame Cecily Saunders in 1967 with the opening of St Christopher's Hospice in London. The driving force of the hospice movement was the desire to transform the experience of dying patients. The philosophy that underpins hospice care is that death is a normal part of life and that all dying people deserve to be free from pain and treated with respect and compassion. It is this model of excellence in the care of the dying that a multidisciplinary pathway steering group from the Royal Liverpool and Broadgreen University Hospital and Marie Curie Palliative Care Institute Liverpool (UK) strove to transfer to other care settings in the mid 1990's when they identified integrated care pathways as a potential tool to improve the care of dying patients. Care pathways are frameworks that help standardise and review quality of care and ensure that clinical care is based on the latest evidence and research.
We need a society which cares, not kills
Issue 31, August 2010
Erik Leipoldt acquired quadriplegia in 1978 after a diving accident. He has just published a book on attitudes of Dutch and Australian people with quadriplegia towards euthanasia and asks whether we really need to legalise euthanasia.
Editorial: Assisted suicide - right to die or duty to die?
Issue 31, August 2010
The debate about euthanasia, or more accurately 'Physician Assisted Suicide' – let's not dress it up by using soft language like 'death with dignity' – has reared its head again. We are told that there should be a legal right for certain persons (specifically doctors) to be able to kill an individual when that is what the individual wants. This claim to the right to assisted suicide, which comes out of a deep seated fear of the dying process, will have far reaching effects on the elderly and the sick should it become legalised.
Further Considerations in Relation to the Refusal of Nutrition and Hydration
Associate Professor Nicholas Tonti-Filippini PhD
Issue 30, April 2010
A number of highly publicised cases in Australia and New Zealand have, once again, highlighted the ethical and legal dilemmas surrounding the provision and refusal of nutrition and hydration at the end of life. Two recent cases that come most readily to mind are those of Christian Rossiter, a 49 year old Perth man who became a quadriplegic in March 2008, and Margaret Page, a 60 year old Wellington woman who suffered a cerebral haemorrhage 20 years ago.
Making a Difference in Challenging Environments
Issue 30, April 2010
Keynote Address at "Together We Can..." National Conference of the New Zealand Council of Christian Social Services 2010
"When Did You Last See Your Father?"
Issue 29, November 2009
In the August 2009 edition of The Nathaniel Report, former Deputy Chief Families Commissioner Sharron Cole wrote about the role of the Families Commission and the changing nature of family demographics in New Zealand. That article provides a companion piece to the following article which was originally presented as part of the Hospice New Zealand Genesis Breakfast Lecture Series on 2 July 2009. Some 40 sites participated in this teleconference.
Interview with Professor Erny Gillen – Moral Theologian and Bioethicist from Luxembourg
Issue 29, November 2009
Professor Erny Gillen teaches Moral Theology and Bioethics at Luxembourg Seminary. He is Episcopal Vicar for Social Affairs and President of Caritas in Luxembourg. He is also President of Caritas Europa and Vice President of Caritas Internationalis in Rome. During August he visited Wellington where I was able to interview him for this issue of The Nathaniel Report.
From the Heart - A Physician's Perspective
Issue 29, November 2009
The following speech was the closing address at the "Changing Minds Conference" in Lower Hutt on August 28, 2009.
"I have just heard Michael McCabe's beautiful paper "From the Heart - A Relative's Perspective". I am crying. I can hear the love beating its way out of the page, not just flowing, not unfolding, not just emerging. The grace of love beats itself wildly out of the page, leaps into my heart, cries out to my eyes and snuggles down. I am touched by his family story.
From the Heart – A Relative's Perspective
Issue 29, November 2009
The following speech was the opening address at the "Changing Minds Conference" in Lower Hutt on August 28, 2009. The Conference explored the needs of the chronically ill and their transition to palliative care.
Editorial - Aging with Grace: Mercy and Bioethics
Issue 28, August 2009
At different points in ministry, since those halcyon days of seminary life at Holy Cross College, I have been reminded of an adage from the Rector, Monsignor Tom Liddy, who often said that, "One does not grow old. Rather one becomes old by not growing!" While every age and culture presents unique and fresh challenges for giving flesh to the gospel every life and all ministry contains a recurring theme of the need for growth in Christ.
Going Too Far
Issue 26, November 2008
At a recent public forum on End-of-Life choices sponsored by the Voluntary Euthanasia Society in Auckland, Jack Jones, the national president of that society suggested that "directives, right to refuse treatment and palliative care, especially as provided by the hospice movement, do not cover all situations where people have reached the stage of life when it has lost all quality". He went on in his address to the forum to suggest that those with dementia should perhaps consider seeking voluntary euthanasia. The Voluntary Euthanasia Society of New Zealand [VES] has as its object "a change to the law to allow terminally ill patients, or those whose quality of life has diminished to an unacceptable extent, the right to a peaceful death with dignity at a time of their own choosing". What was alarming about this statement was not just that it was made, but also that that many of the society's members, speaking from the floor, seemed to support that notion, that people with dementia should consider voluntary euthanasia as a way of reducing health service costs so enabling more to be spent on children and younger people.
Reflections on Aging
Issue 25, August 2008
Any reflection on aging as a process is enriched by the process of theological reflection. There used to be a book for students of the piano called "Easy Tunes for Little Fingers" - the theory being that once you had the basic scale or the foundational notes to music, you could build a tune that was as simple or complex as one would want to play. Theological reflection is a similar process. Like any discipline it begins with some very simple concepts and then adds in more complex thought as one encounters the mystery that is Christ. Theology is described variously as "faith seeking understanding" or "the clothing of the faith experience in Christ." It begins with an experience, and, guided by the light of the Holy Spirit seeks to understand this experience in both a reasonable and faith-filled way. The task of theology, and it is a disciplined and demanding task, is the search for truth. The seventeenth century poet John Donne expresses the challenge of searching for truth very beautifully when he says:
"On a huge hill,
Cragged, and steep,
Does dying with dignity always mean actively ending life?
Professor Margaret O'Connor and Dr Susan Lee
Issue 24, April 2008
Our daily papers perennially carry lead articles about aspects of controlling one's own death. Provocative articles, occurring so regularly, might make one wonder if the community's fears about dying are justified. Perhaps in our desire to squeeze the most out of life, together with the seduction of medical technology that promises a longer life, has made some of us uneasy about just how our own end will come. Isn't this the skill of palliative care and if so, how is it that we never hear about it? Whilst one would not want to negate the arguments about an individual's rights within a demographic society, there are several other aspects of care at the end of life that are worthy of consideration.
Life is a Gift from God
Issue 23, November 2007
Life is a gift from God! But often our experiences in life might not always make us believe or feel that life is in fact a gift from God.
"Isn't it great to be alive" does not only sum up those times when we eat freshly baked bread, taste a glass of one's favourite red wine, slip into a warm bubble bath surrounded by tea-light candles, or marvel at infinity as one gazes into a star-studded night sky.
Understanding the Use of Advance Directives in New Zealand
Issue 23, November 2007
The following speech, by Ron Paterson, was delivered as part of a panel discussion on Advanced Directives at the "Changing Minds Conference" in Lower Hutt, 12 October 2007.
Te Omanga Hospice, as the specialist palliative care provider in the Hutt Valley and Wairarapa, entered into a partnership with the Hutt Valley District Health Board to enhance the knowledge, understanding and acceptance of palliative care by health professionals so that ALL dying people have timely access to palliative care.
The CDF Statement on Artificial Nutrition and Hydration: What Should We Make of It?
Issue 23, November 2007
Over the past few weeks, there has been much conversation within the Catholic health care community and among theologians and ethicists, both within and outside of Catholic health care, about the meaning of the most recent statement from the Vatican's Congregation for the Doctrine of the Faith (CDF) on artificial nutrition and hydration. The statement (or "Responses" to two specific questions posed by U.S. bishops) and an accompanying "Commentary", intended to clarify the meaning of the March 2004 allocution of John Paul II, has actually generated a range of interpretations and a number of questions. In this short essay, I wish to try to sort out a) what seems to be clear in the statement and commentary, b) what seems less clear, and c) what is puzzling.
Statement on Artificial Nutrition and Hydration
Congregation for the Doctrine of the Faith
Issue 23, November 2007
Responses to certain questions of the United States Conference of Catholic Bishops concerning artificial nutrition and hydration
First question: Is the administration of food and water (whether by natural or artificial means) to a patient in a "vegetative state" morally obligatory except when they cannot be assimilated by the patient's body or cannot be administered to the patient without causing significant physical discomfort?
Response: Yes. The administration of food and water even by artificial means is, in principle, an ordinary and proportionate means of preserving life. It is therefore obligatory to the extent to which, and for as long as, it is shown to accomplish its proper finality, which is the hydration and nourishment of the patient. In this way suffering and death by starvation and dehydration are prevented.
Second question: When nutrition and hydration are being supplied by artificial means to a patient in a "permanent vegetative state", may they be discontinued when competent physicians judge with moral certainty that the patient will never recover consciousness?
Response: No. A patient in a "permanent vegetative state" is a person with fundamental human dignity and must, therefore, receive ordinary and proportionate care which includes, in principle, the administration of water and food even by artificial means.
The Supreme Pontiff Benedict XVI, at the Audience granted to the undersigned Cardinal Prefect of the Congregation for the Doctrine of the Faith, approved these Responses, adopted in the Ordinary Session of the Congregation, and ordered their publication.
Rome, from the Offices of the Congregation for the Doctrine of the Faith, August 1, 2007.
William Cardinal Levada
Angelo Amato, S.D.B.
Titular Archbishop of Sila
An Interview with Mary Schumacher
Issue 23, November 2007
New Zealand's first hospices Mary Potter Hospice in Wellington, Te Omanga in Lower Hutt and Saint Joseph's (now Mercy) Hospice in Auckland, were opened in 1979. With over thirty hospices nationwide there is now widespread recognition and awareness of the hospice movement and of the need for, and availability of, palliative care for the terminally ill.
On 25 October 2007 I interviewed Mary Schumacher, Chief Executive Officer of Hospice New Zealand, and asked her about the remarkable growth of the hospice movement in New Zealand and the challenges that such growth presents.
Editorial: "The old, old story..."
Issue 23, November 2007
"Many a worker in a factory or shop has had a strange, beautiful and pious youth. But city life sometimes removes the 'early dew of morning.' Even so, the longing for 'the old, old story' remains. What is at the bottom of the heart stays at the bottom of the heart. In one of his books Elliot describes the life of factory workers, etc., who have formed a little community and hold religious services in a chapel in Lantern Yard, and he says of it, 'It is the kingdom of God on earth, no more and no less."
--Vincent van Gogh, Letter to Theo van Gogh 1876
In less than a month we observe the feast of Christmas – a day of pause and rest, a day for family and those in special need – a day to honour and to celebrate, in myriad ways, the birth of the Word made flesh. In the lead up to Christmas it is passé to hear commentary such as how "secular New Zealand has become", what a "commercial racket" Christmas is, and, how "stressful" this time of the year is with so many competing demands on one's valuable time. Thank goodness, it is said, we can all relax until the country "re-opens for work" at the end of January!
These perceptions generate challenges both in appreciating the light and the shadows of city life and because of the manner in which they powerfully reflect the loss of "the early dew of morning." Equally, they underscore the need to communicate insights and wisdom in fresh ways that resonate in the heart where the longing for the old, old story is still most keenly felt. Such is the challenge in theological bioethics whose role is to make the medical, ethical and moral relevant and understandable within specific cultures and according to a faith perspective. In the midst of the very real complexities of city life it is all too easy to react in a pragmatic and limited manner rather than returning, as we all must, to the old, old story of the Word made flesh written in Scripture and to be found deep within every human heart. Such a return may well generate fresh understanding to see that a so-called "secular" perspective may in fact reflect a deeper and existential longing for the old, old story by a different name.
The use and misuse of technology shapes much of our worldviews and many contemporary debates in biomedical ethics, not least our care of the dying. The use of technology in medicine has grown by geometric proportions as have the moral implications of its use. In the care of the terminally ill and the dying the overuse of technology is not only a way of doing things but also reflects a certain way of thinking. When used inappropriately technology can trigger ethical and moral consequences. In such circumstances both medicine and society are not always able to critique the issues that are raised in a comprehensive and life-giving manner. For these reasons we felt it timely to devote this complete issue of The Nathaniel Report to some current end-of-life issues.
Mary Schumacher, Chief Executive Officer of Hospice New Zealand, reflects on the challenges that the New Zealand hospice movement faces nearly thirty years after the first hospices were formally established. In this wide-ranging interview Mary Schumacher observes that within the rapidly changing context of healthcare delivery in New Zealand the boundaries between active curative treatment and palliative medicine have also blurred. Consequently different technical skills are required. Similarly the partnerships between hospice and other healthcare providers have also changed and the role of cooperating with, and working alongside the aged-care community become more critical particularly if all are to have access to quality palliative care.
In August 2007 the Congregation for the Doctrine of the Faith [CDF] published its response to questions concerning the use of artificial nutrition and hydration for patients suffering from the distressing and relatively rare condition of post-coma unresponsiveness [PCU] or the persistent vegetative state [PVS]. We reprint Doctor Ron Hamel's thoughtful and thought provoking response to the CDF's statement.
The teaching of the CDF and subsequent reflections on it from international theologians is a timely reminder that our commitment to the sanctity of life and the stewardship of the gift of life does not equate with the need to use technology at all costs or in every possible situation. Such a technological imperative could readily become vitalism by another name – life at all costs - and prolong the dying process unnecessarily. The Catholic moral tradition, as many notable theologians have reminded us over time, seeks the path of a "via media" – a path that is beautifully encapsulated in the philosophy of the hospice movement, namely, "to neither hasten, nor postpone, death."
Technology is not the primary means for managing or caring for the dying patient even though the judicious use of it is a central focus in ethical palliative care delivery. It has been said that the moral dimension of healthcare is that which leads us deeper into the mystery of our humanity. The care of the dying is a role for the whole community as it seeks to care for each patient in his or her uniqueness before God.
This communal role takes us necessarily into the spiritual realm without excluding the medical dimension of healthcare.
Good communication is the lifeblood of relationships and its lack can readily lead to a sense of loss and disconnection with the old, old story. Good communication is essential if family and healthcare providers are to honour the wishes of a particular patient, especially the terminally ill. Health and Disability Commissioner for New Zealand, Mr Ron Paterson, provides a timely reminder of the value of Advance Directives and their place in decision making at the end of life.
Sue Seconi's poignant reflection on a ten-year journey with her mother who was suffering from Alzheimer's disease reveals how she became aware of the gift of life and the giver of life at an even deeper level despite all appearances to the contrary. Hers, and similar stories of families caring for loved ones at the end of life, embody the core meaning of the old, old story of God among us – a story which fundamentally speaks of self-giving and presence especially in the midst of suffering.
Rev Michael McCabe, PhD
The Nathaniel Centre
Defining New Zealand Palliative Care: A Discussion Document
Nathaniel Centre Staff
Issue 19, August 2006
The challenges and needs of people at the end of life are multifarious. In the first instance the priority is to enhance quality of life by providing relief from pain and other distressing symptoms. This calls for a holistic approach to care that integrates the physical, psychosocial and spiritual dimensions, and that also takes account of the needs of families/whanau and other caregivers who are accompanying and caring for the dying person.
The New Zealand Suicide Prevention Strategy 2006-2016 - A Critique
Issue 19, August 2006
The anguish and despair following the suicide of someone we love can be overwhelming. Two questions that we ask over and over are WHY and WHAT could we have done to stop them. At a national level, knowing that we continue to have high rates of suicide for some age groups compared with other countries raises the same questions; WHY and, as a nation, WHAT can we do about it.
--The Honourable Jim Anderton, Associate Minister of Health
Approximately 500 New Zealanders die each year by suicide and five times as many as this figure are hospitalised after a suicide attempt. Suicide in New Zealand is a serious problem annually more New Zealanders die this way than on our roads.
Eighty percent of all suicides in New Zealand occur with people aged 25 and over, with the majority of these deaths in the 25-44 year age group. While the young are particularly vulnerable to suicide the impact of suicide is felt across all age groups in New Zealand including the elderly and socially isolated, those who live in the most deprived areas of the country, the unemployed and those suffering from depression. Young Māori men and women have a significantly higher rate of suicide and hospitalisation for suicide attempts than non-Māori. Although more females are hospitalised after attempting suicide more males actually die by suicide.
The emotional devastation caused by suicide is profound for families as well as for the wider community. Suicide also has a major economic effect on the community. It is estimated that the annual cost of suicidal behaviour in New Zealand is nearly 1.4 billion dollars.
In his foreword to The Ministry of Health's recently published The New Zealand Suicide Prevention Strategy 2006-2016, Associate Minister of Health, the Honourable Jim Anderton hoped that the release of this new strategy will mobilise renewed efforts to work together to prevent suicide and suicidal behaviour. He noted that suicide prevention is complex and many would admit there is no quick fix to this social problem in New Zealand which affects so many every year. Nevertheless, with sustained and coordinated action at many levels in society, and with a variety of approaches, it is possible to achieve significant results in suicide prevention.
The Suicide Prevention Strategy builds on an earlier national strategy aimed at lowering youth suicide [The New Zealand Youth Suicide Prevention Strategy 1998.] The rate of suicide has decreased for young males as a result of this earlier strategy and there are more services and community resources in place to help the young and the wider community understand suicidal behaviour and suicide prevention.
In this latest strategy the focus has now expanded to all age groups, acknowledging the fact that suicide has a significant impact in other age groups, most notably in elderly males who have a higher rate of suicide than younger males. The prevention strategy outlines a framework that shows how the various activities across a range of sectors in the community can come together to prevent suicide across all age groups. Underpinning this framework is a fundamental vision of a society where all people feel that they:
- Are valued and nurtured
- Value their own life
- Are supported and strengthened if they experience difficulties
- Do not want to take their lives or harm themselves.
The strategy aims to reduce the rate of suicide and suicidal behaviour and equally to reduce the harms and impacts that are associated with suicide on families/whanau, friends and the wider community.
The seven goals of the New Zealand Suicide Prevention Strategy are to:
- Promote mental health and wellbeing, and prevent mental health problems
- Improve the care of people who are experiencing mental disorders associated with suicidal behaviour
- Improve the care of people who make non-fatal suicide attempts
- Reduce access to the means of suicide
- Promote the safe reporting and portrayal of suicidal behaviour by the media
- Support families/whanau, friends and others affected by a suicide or suicide attempt
- Expand the evidence about rapes, causes and effective interventions
With some insight the strategy notes that while suicide is a serious health and social issue, and represents a significant loss to our society it is also an indicator of the social wellbeing of the population.
The importance of societal factors in suicide was recognised more than one hundred years ago by Sociologist Emile Durkheim in his 1897 book Suicide: A Study in Sociology. He was the first to discount non-sociological explanations of suicide. He sought to show that, what masked as a highly individual and personal statement, could be explained, in part, in terms of the degree of social integration within a particular society. He argued that suicide was an echo of the moral state of society and was in fact dependent on social causes and not on individual conditions even though the latter were a factor in suicide. For Durkheim, a high rate of suicide in a particular society or particular social group was in direct proportion to the lack of social cohesion in that society or that social group.
Examination of the World Health Organization's Map of Suicide Rates helps to illustrate this point. Countries with the highest rate of suicide include Australia, New Zealand, Russia, China, Eastern and Central Europe. Predominantly Catholic and Islamic countries have some of the lowest rates of suicide. Do these statistics reflect the more secular nature of our New Zealand society or are there other sociological factors beneath such disparity? Might a society that valued the transcendent have a better appreciation of the role of religion and faith in suicide prevention? The Suicide Prevention Strategy would be strengthened if there was wider recognition of the place of faith and spirituality and their role in helping to protect the vulnerable against suicide.
The strategy document does not address the issue of physician-assisted suicide or euthanasia and claims that this subject raises separate ethical, legal and practical issues. While the issues appear to be separate they are very much linked to the wider issue of suicide in society, as Durkheim implied so many years ago. This is particularly so when one considers a topic such as 'the meaning of life' from the perspective of the elderly.
In recent years the increase in numbers of the elderly is reflected in the growth of retirement communities which provide a continuum of care that ranges from independent living to rest-home and finally to hospital care. While retirement homes can offer wonderful care, a greater sense of security and opportunities for community living, they can unwittingly leave the elderly feeling isolated with minimal influence in society. To the extent that this is perceived as being true, or is true in reality, then some elderly may well feel that their lives have lost meaning long before they lose their lives. This perception may well predispose the elderly to greater risk of suicide. Because their physical frailty may limit their ability to commit suicide, voluntary euthanasia and physician-assisted suicide offer a false form of security.
Given the very high rate of suicide in elderly males in New Zealand it is timely to recall the fact that the calls for voluntary euthanasia and physician assisted suicide reflect a high level of suicidal ideation in this group as well as in the chronically and terminally ill.
The Suicide Prevention Strategy depends on adequate mental health services for all ages and therefore highlights the need for a deeper understanding of the mental health requirements of the elderly. Further, because voluntary euthanasia and physician assisted suicide is part of the pattern of suicide in our society, it has to be recognised and addressed for what it is a method of committing suicide.
The strength of the Suicide Prevention Strategy document is in the way it openly addresses a major personal and profound social problem in New Zealand. The prevention strategy rightly states that there are no quick fixes to a problem of such depth. Nevertheless, in recognising the social causes of suicide, even implicitly, and in providing a strategy to help prevent the untimely and devastatingly tragic death of New Zealanders, it helps provide a way forward for all in the society. Durkheim described this path as social cohesion. It can also be described as the path to stronger communities.
Rev Michael McCabe, PhD
The Nathaniel Centre
Dr Elizabeth Hepburn (IBVM)
Issue 17, November 2005
In Australia there has been a move in public hospitals to encourage the formulation of advanced care directives through a programme known as 'Respecting Patient Choices'. This programme has prepared a patient information sheet and also instituted a process by which the matters canvassed could be discussed with trained personnel. In its inception it has much to recommend it.
Spirituality, Suffering and Dementia
Issue 17, November 2005
Some forty years ago the Second Vatican Council concluded its deliberations with the very beautiful document, "Gaudium et Spes" - "The Church in the Modern World". It contains many rich themes, not least, the nature and dignity of the human person and the communal or social nature of that human person. By his or her very nature the human person is not only to be considered "whole and entire, with body and soul, heart and conscience, mind and will" (Gaudium et Spes, n.3), he or she must also be considered as a being-in-community.
The Starfish Programme
Issue 14, November 2004
San Lazaro Hospital is a 600-bed infectious diseases hospital in a poor area of Manila. It deals with people who have diseases such as rabies, measles, tetanus, tuberculosis and AIDS. The hospital is under-funded and struggles to provide care for people who are themselves poor. The life-threatening nature of many of the diseases affecting San Lazaro patients means that there are many deaths in the hospital.
Aged Health Care and Ethical Business Practice
Issue 14, November 2004
In the course of my work I have encountered various theories which describe leadership behaviours characteristic of effective and ethical organisations. In the first part of this article, I will summarise three such theories and offer a short reflection on what they teach us. Then, in a second part, I will offer some questions to assist those involved in aged care to reflect on the ethical nature of their own behaviour.
What do I mean by the term ethical? Ethics is the evaluation of human behaviour, and the allocation of the judgment by a society or individual that this action is either virtuous or to be avoided. Ethics is the result of a formation process whereby we come to hear a voice, whether in the inner core of a person or a society, which says: "Do this or shun that." Behaviour that is virtuous is chosen knowingly and freely and leads to responsibility and accountability.
1. De Beer
De Beer, a foundational theorist in operations research, has developed an approach to describing organisations that he calls the "Viable Systems" model. Simply put, De Beer believes that every effective organisation - hospital, health practice, rest home, or corporate health service - mimics a living organism. His approach, which focuses on the needs of the environment being served, looks at four key elements that ensure viability:
- Interacting with the environment. An organisation can only offer service if it is aware of the needs of the group it is serving, has the resources and is focused to act. By and large the actions of the "acting groups" can be recorded, measured and costed. We can record what actions are taken - who is spoken to, by whom and when. We can make judgements whether agreed to patterns of behaviour have been followed. We can measure the number of dollars per negotiation. The acting groups can include everyone - from those who are the caregivers to those involved in the negotiation of funds.
- Coordination of actions. Those who act must be coordinated. It is the role of coordination to ensure the best is chosen and acted upon at the right time and in the right order. There is nothing worse that applying for the same grant twice or giving a repeat dose of medication. As an organisation grows in its complexities there is a need for the coordination to be organised.
- Control and regulation of resources, time and focus. There is a need to work within various constraints that the stakeholders - State, client group, or the wider community - are able to afford. This involves control and audit, planning and budgeting, resource allocation, reporting and review. These constraints inevitably place some limitations on meeting the expressed needs of the group being served.
- Governance. An organisation's effectiveness depends on its vision and focus. This involves the development of governance, policy and procedure to balance the requirements of the various stakeholders and to ensure the ongoing viability of the organisation. Even the best-managed unit will go under if the wider needs of the political, social and economic environment are not taken into account.
De Beer concludes that it is rare to find a viable system in which all four of these actions are associated with a single-person role. The norm is for different roles to take different responsibilities.
2. Brousseau and Driver
Brousseau and Driver have developed a theory based on the amount of information leaders need to make a decision and the rapidity of their decision making. Their theory highlights that people display certain behaviours when they think others are watching and act differently when on their own. The model is based upon four different leadership profiles.
- Some people want only the minimum of information required and will then get on and make the decision. They want to act quickly and accurately within established patterns. They are frustrated by delay, innovation and procrastination.
- A second group want a breadth of information and perspectives. Then, then they have that information, they are willing to get on and make a decision quickly. They don't require a depth of information.
- The third group want a fullness of information and require such before acting but they want that information to be organized so as to come to decision relatively quickly. They are focused on acting and getting results. They like a good plan and structure so as to get a risk tolerant result.
- The fourth group seek multiple sources and elements of information. They will suspend judgment till they have information of a level that enables them to see and judge from multiple dimensions.
One group is fast, consistent, loyal, persistent and orderly. They get things done but may resist change and ignore new ideas. The second are fast, likeable, generate ideas, adapt swiftly, but may have a short term perspective, and lack coherent planning. The third are thorough, accurate, planned, objective and logical. They may be over-controlling, rigid and argumentative, and may actively resist others input. The last group tends to be creative, resourceful, collaborative problem solvers who are empathetic and tolerant.
When Brousseau plotted the most successful managers according to their level in the organisation, he found that the best supervisors were profiled most strongly at one, the managers at two, the GM's at three and the CEO/leaders at four.
From this Brousseau concludes that behavioural preferences in individuals lead to actions, decisions and approaches that are more successful and appropriate at different levels of the organisation. This theory suggests that in an organisation particular people are going to approach their decision making in different ways. Persons will seek to make decisions with diametrically opposed amounts of information.
Brousseau also concludes that as a person matures and grows with experience, the focus and approach of their decision making can develop. Accordingly, the level and amount of responsibility a person can handle changes in individuals and is different for different individuals. This is very much in keeping with the thinking of traditional moral development theorists such as Kohlberg and others.
A third model, Leadership Efficiency Analysis, derives from a 30-year longitudinal study by Mahoney and colleagues. They describe different sets of skills and competencies that are characteristic of "successful" leadership in organisations.
The first set of leader skills includes:
Having the ability to create a vision. This requires a series of skills and abilities, whether in an individual or group, that include being mistake averse and being steeped in the core elements of the profession - for aged care we might describe these as: do no harm; act to heal; support autonomy and independent decision making; promote informed consent; and acknowledge the place of next of kin.
- Showing innovation and being able to develop a culture of possibilities and novelty.
- Being aware of the technical demands of the business, environment and sector; for example, having sound knowledge of the process of aging as well as the legal and financial structures.
- Being able to make decisions and see their own limitations and strengths.
- Acting strategically by recognising the changing demands of the social, political and cultural environment; for example the changing demographics of an aging population and knowing that needs differ according to culture and gender.
A second set of skills and competencies identified by Mahoney centre around the ability of leaders to develop persons who will work with and for them. Successful leaders are persuasive and outgoing, excited, yet able to exercise restraint.
Finally, successful leaders possess a third set of skills and competencies that enable them to implement the vision. They can structure, decide on the best tactics, communicate and delegate. They are then able to follow through. They will take control of resources, give clear and accurate feedback and will work to achieve results. They want to be a leader and, interestingly, they are to a degree dominant, focused on output and production.
If this profile of the effective leader/manager seems rather "tough" it needs to be noted that Mahoney's study highlighted one other key element that characterises most successful leaders/managers. They are also team players; cooperative, consensual, empathetic and aware of the demands on, and the needs of, their stakeholders and immediate boss.
What can we learn from the three theories?
Reflecting on organisational structure in the light of the three theories has led me to identify a series of levels in the leadership of an organisation and to postulate a thesis. My thesis is that an individual's ethical decision making, and therefore their culpability and virtue, are a product not only of the traditional elements of knowledge and freedom, but of the very makeup of their personality and the behavioural and developmental levels that they have achieved. In other words, personal traits that shape our ability to gather and use information impact on our ability to lead, decide and act, and consequently to accept responsibility for our actions. The theories highlight that there are different profiles, needs, competencies and levels of information required if someone is to lead effectively and act morally in an organisation and that this may be different at different levels of the organisation.
How can we relate these insights to the way in which we approach ethics in aged care? I believe it can be done by raising a series of questions which will lead you to explore and evolve your own practice.
Ethics in Aged Care
In general, discussions about ethics and decision making tend to focus on individual responsibility and individual impact; the way one treats patients, end of life decisions, nutrition and hydration, enforced feeding, etc. I will, however, begin at the opposite end - at the level of governance - with the ethical responsibilities of the directors and owners and the wider group of stakeholders - the community and the State.
If one is frail and elderly, where does the primary responsibility for care lie? Does it lie with the individual, their family, the local community or the national community? What is our ethical accountability to the elderly who are in need and do not have the resources? There are core social responsibilities to feed, shelter, to heal and not to harm, to care and act justly. These questions lead us to a fundamental ethical judgment - the allocation of community resources.
The question of ethical behaviour then moves to the level of the organisation involved in aged care services. An organisation is morally and ethically bankrupt if it is unaware of the social, economic and political demands, and if it does not structure itself prudently in respect of best financial, managerial and clinical practice. Board members and senior management must be capable of understanding and making complex decisions. This, in turn, involves examining the vision, intention, aims and structures of our organisation.
We have an ethical responsibility to evaluate the environment in which elderly people live. What is acceptable, socially and ethically is not limited to what is legal. It was at one time legal to have unpaid servants. That did not make it ethically acceptable. It is legal to establish under New Zealand law a company that makes a healthy profit out of the needs of the elderly. Does that make it ethically acceptable? While not a vice, there is no over riding virtue in making a profit. It is only one element that informs the vision of aged care facilities.
When establishing an aged care facility we put out a prospectus for shareholders and investors and we put out a brochure for prospective patient/clients. What are the obligations and whose obligations come first? Is there adequate funding and ability to protect the interests of those who invest? If not, this constitutes a breach of trust that can all too easily amount to negligence, false pretences and theft. If we have put ourselves forward as a "community of care", where is our obligation to the impecunious and the frail, the disabled and the high need? If an individual can't pay should we put them on the street for a breach of contract?
Are we only responsible for the things we have done or are we also responsible, by omission, for failing to recognise a possibility or enable access to a service that we should have? Have we chosen people with the proper ability and preferred behaviours to lead the organisation? Are those with leadership responsibility able to communicate to others and persuade them as to what needs to be done? The Royal Commission of Inquiry into the treatment of cervical cancer presents us with a perfect New Zealand example of a system wherein, by commission and omission, people acted both immorally and illegally.
Owners and board members need to be able to see and mitigate the risks, need to be aware of the legal and contractual obligations as well as the ethical and moral responsibilities they are taking on? Herein lies both individual and corporate moral responsibility.
The next level of accountability lies with those in an organisation who have responsibility for the planning, structuring and organising. The structures of management exist not only for financial and organisational accountability - they are structures through which ethical accountability and responsibility also flow.
There is an ethical and moral responsibility that service personnel have the proper skills and resources and that they are competent to deliver such. Are there established plans, budgets and programmes? Do key staff possess the core technical skills required? Is there openness in listening to best practice at the governance, managerial, supervisory and action levels? Medical training doesn't necessarily make someone an expert in the protection of shareholders monies or employees' contractual requirements. Is correct advice being sought? Are legal requirements articulated? Are there established audit, control and coordination processes?
What about systems for communication? Others cannot be held responsible unless they are aware, are resourced and are told that something is working or not working. Are there clearly established expectations of performance and results? Are there just wage and working conditions? Is there a commitment to professional development? Is the care holistic in its vision and practice?
What is the care environment like? Are there high standards of hygiene? How can patients' autonomy be preserved and their choices maximised? What choices do they have? What efforts are made to ensure they understand? What about cultural safety? Are there the systems to ensure that things are delegated and recorded, whether paying for a job or recording faults in the service?
It is not enough to focus on the actions of the board or health professionals. Legal and moral responsibility and accountability also apply in respect of the accountant, the physiotherapist, the caterer, the priest or chaplain. There is a responsibility to ensure that they don't break the law, and that there is a professional relationship based on care and trust.
The next key issue is the way in which an organisation interacts with its environment. Are key staff capable of seeing the "big picture" or are they very good practitioners who have a very narrow approach? Financially sound systems managers who can cut costs and develop strong reporting structures need to understand and be committed to the broader vision while also being aware of the technical requirements of their industry. In the aged care sector there are numerous examples of innovation and resource allocation at work. But has this been done to the detriment of employees? Who are the people who are caring for the clients? Are they trained, competent, rested and aware of best practice?
People cannot act virtuously without knowing what constitutes best practice and without the knowledge and wisdom to avoid risk. We accept that persons cannot blame their actions on a superior: "I was under orders". However, if a person does not know, has no real choice or ability to change the situation and is trying to balance obligations that are to some extent at least in conflict, then their personal culpability is lessened. At the same time the culpability of those who had the obligation to organise, to supply, resource, and plan is raised. There is an ethical duty to foster an organisational culture that is responsive to environmental needs within the constraints of resource and policy.
Finally, at the level of interaction with the client, the supplier or the community, staff have an obligation to act professionally according to established best practice; to know their craft, to remain updated, to give an honest day's work for an honest day's pay, to communicate and reflect the needs discovered and to work for the betterment of the organisational whole.
In all of these elements we are led to the font of moral culpability. Within a healthy organisation structures and processes will empower persons so that they act with full knowledge and according to a path that is freely chosen.
The organisational theories outlined above suggest that in an ethical organisation the staff and practitioners need ready access to information, will know the possibilities and be able to make quick and focused decisions. In making these decisions, however, there exists a fundamental tension between the needs of the client and the ethical responsibility of staff.
Those in positions of leadership who are charged with making decisions will be under pressure to act. They will decide and act on the basis of the information that is available to them. They will also act according to the best practice they have been educated in. In general we can say that they will act as taught. If the organisation says that informed consent is required, then they will almost certainly act accordingly. However, it is equally the case that if practice dictates, for example, leaving a client in bed till 10:00 am and then letting them sit for seven hours, that staff will see that as the norm. Some might say that these people are not responsible. I suggest that those who step into the aged care arena at whatever the level, including the uninformed, the untrained, the unskilled, are morally and ethically responsible.
There are skills, abilities and ways of thinking that are required of individuals in positions of responsibility within the different parts of an organisation. To let someone sit on a Board who they are unable to understand the wider implications is unethical. To have them there purely because they are the financiers is unethical; they should appoint a director to represent their interests.
To appoint a CEO who cannot communicate, plan and organise, is unethical. To have a night supervisor in an operation of 500 clients who cannot coordinate, see options and work as part of a team is unethical.
To appoint staff and not train them in the understandings they require to make decisions with and on behalf of their clients is unethical. To appoint a person beyond the level of their fundamental ability and behavioural competency is unethical.
On the other hand to establish an organisation with staff who have these fundamental sets of abilities and skills is virtuous and the basis of a just and ethical society. It is at this level that we create the "City of God". Ultimately this requires an organisation to move beyond a simple task oriented focus. The challenge of behaving in an ethical way at the organisational level requires the establishment of a common ethos and a culture of communal responsibility and accountability. This calls for a modus operandi of empathy, consensus and cooperation, all within an awareness of the stakeholders' needs and the requirement for each individual to do their job ethically.
How can we see this in a take home package? De Beer, Brousseau and Mahoney couldn't have put it any better than a tent maker from Antioch who once wrote:
"Instead of that God put all the separate parts into the body on purpose. If all the parts were the same how can it be a body? As it is the parts are many, but the body is one". (1Cor 12:18ff)
Mark Richards works in career consulting, leadership development and management assessment. His experience also includes parish leadership, chaplaincy work and chairing a Health Ethics Committee. This article is an edited version of a presentation given by the author at The Nathaniel Centre's Inaugural Conference 'Spiritual and Ethical Issues in Aged Care' in November 2003.
Clinical - Ethical Judgements without "short cuts"
Issue 14, November 2004
In March 2004 an International Congress on "Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas" was held in Rome. The article below, which first appeared in Bioethics Outlook, Vol. 15, No. 3, September, 2004, looks at the implications of the Pope's address for the treatment of persons who are in a state of "post coma unresponsiveness" (traditionally known as the vegetative state).
Palliative Medication: The Need for Common Sense
Issue 13, August 2004
Lesley Martin is no longer on the front page of every newspaper but the issue of euthanasia will not go away. At the Hospice New Zealand AGM, June 2004, Peter Brown MP, said the "Death with Dignity" bill, promoting euthanasia, may have been defeated but the issues are still alive. At that meeting, hospice personnel present commented that patients in hospice palliative care services die with dignity.
The Voice of Your Despair
Issue 13, August 2004
"Can I see another's woe and not be in sorrow too?
Can I see another's grief and not seek for kind relief?"
William Blake's words must surely strike a chord with all those who have followed the trial and subsequent conviction of Lesley Martin for the attempted murder of her mother, Joy. Sadly Joy Martin, an apparently private and dignified woman has had her illness, suffering and death made widely known to the New Zealand public and beyond. The trial process necessarily investigated all aspects of her initial presentation to hospital, subsequent management and the ensuing months of pain, nausea, vomiting, isolation and distress. Those who have read the deposition hearing documents, Lesley Martin's own account of events in her book and the hundreds of pages of evidence given at the trial in Wanganui in March of this year cannot fail to be moved by this harrowing account of one woman's journey through illness towards death.
The Hospice Movement in New Zealand - 25 Years On
Issue 13, August 2004
In June 1979 New Zealand's first hospice, Mary Potter Hospice, was opened in Wellington. Later that year, Te Omanga Hospice in Lower Hutt, and Saint Joseph's Mercy Hospice in Auckland, were also opened. Just twelve years earlier, Saint Christopher's Hospice in London, symbolically referred to as the first modern hospice, was opened.
Stepping Out Into Aged Care - Acknowledging Possibility
Dr Bernard Leuthart
Issue 12, April 2004
The potent imagery of the dance is fascinating for the rich storehouse of metaphor it offers for elaborating on the type of movement potentiated in the work of the caring ministries. American educator, Maria Harris draws here on the wisdom of one Bill Maroon – a student of haiku somewhere - who offered this potent snippet as a metaphor for the sort of interaction that happens in the teaching moment between the learner and the learned.
Some Musings on Care for the Elderly in General Practice
Dr Aine McCoy
Issue 12, April 2004
Many of my elderly patients tell me that it is no fun getting old. My standard reply is that the alternative isn't that great either!
The elderly present us with many challenges medically, socially and spiritually, but my experience in providing care to them has been an enjoyable one. I have come to appreciate some of the things that the elderly value in their carers. These include being a good listener, having a sense of humour, being there for continuity of care, being treated with respect and having their opinions valued, especially when they do not accord with yours.
Gospel Perspectives for an Embodied Spirituality of Care
Ann-Marie Harvey rsm
Issue 11, November 2003
"Why do we need God for ethics, for the work of humanisation? Do not unbelievers do some things better?" 
This address investigates issues of spirituality that arise in aged care and it invites participants at this conference to examine ways whereby people in the third age not only grow in prayerfulness, but also in resistance to social marginalisation and diminishment.  Just as ethics is the link between the mystical and the prophetic life of Christians, so an embodied spirituality of care offers a humanising link between an ethics of care and an ethics of justice. Three perspectives of God's word at work in the world are discussed: fullness of life in a wounded world, a gospel reflection on "The Woman with the Ointment", and a critique of ideology.
International Colloquium: Globalization and the Culture of Life : Care of the Frail Elderly and the Dying
Issue 10, August 2003
July 29-August 3, 2003
Recently Father Michael McCabe, Director of The Nathaniel Centre attended the inaugural Colloquium for Catholic Bioethicists in Toronto, Canada. The Colloquium was organised by the Canadian Catholic Bioethics Centre and sponsored by the Knights of Malta. Bioethicists and moral theologians from over 20 countries considered the care of the frail elderly and the dying from the perspective of globalization.
Editorial : Faith and Reason - Reflections on a debate...
Issue 10, August 2003
In July 2003 the New Zealand Parliament voted 60 to 57 against a Private Member's Bill, "The Death with Dignity Bill" that sought to legalise euthanasia, or more correctly, physician-assisted suicide. The seemingly close vote contained a number of Parliamentary members who, while against the Bill, wished it to go to a Select committee to allow further public debate.
The Experience of Assisted Suicide in The Netherlands and in the State of Oregon in USA: What can we learn?
Issue 9, April 2003
On April 9, 2003, the New Zealand Parliament was due to debate Peter Brown's Private Member's Bill entitled "Death with Dignity." The bill's stated purpose is: to "allow persons who are terminally and/or incurably ill the opportunity of requesting assistance from a medically qualified person to end their lives in a humane and dignified way and to provide for that to occur after medical confirmation, a psychiatric assessment, counselling, and personal reflection."
Ethical Decision-Making and Grief
Issue 8, November 2002
The word grief comes from a Latin word 'gravare' which means deep sorrow. Grief is a deep sense of loss, which is part of the human condition. For both the healthcare professional and the ordinary person, ethical decisions often need to be made in a grief-filled context.
Nadja Tollemache OBE
Issue 8, November 2002
Over the last few decades there has been increasing emphasis on self-determination (also labelled individual autonomy) in regard to a person's right to choose their medical treatment.
However, some difficult problems arise in cases where rational, legally competent individuals want to make provision for what is to happen in case they should ever become incapable at a later date through unconsciousness, coma, or mental incapacity. The question is whether such a provision made now is binding at a later date on health professionals, caregivers or members of the family. Such a declaration of wishes for the future is known as an "advance directive" and may be either in the form of a "Living Will" or in the form of an enduring power of attorney for personal care.
Editorial: Opportunities at the End of Life
Issue 8, November 2002
"We who lived in concentration camps can remember the men who walked through huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a person but one thing: the last of the human freedoms – to choose one's attitude in any given set of circumstances, to choose one's own way."
--Victor Frankl (1959)
In New Zealand there has been considerable discussion recently about euthanasia, or more correctly, assisted suicide. Proponents of assisted suicide argue that it is the ultimate choice and promote it as helping the individual achieve "death with dignity". The debate has focussed around two recent events both highlighted in the media – the advent of the so-called "exit bag" and publication of a book by Lesley Martin entitled, "To Die Like a Dog."
Cultural Issues in End of Life Care
Dr Rod MacLeod
Issue 4, August 2001
In many societies people define themselves by their religious and cultural grouping, even when their faith or immersion in religion or culture is limited. There are wide variations between people of differing faiths, ethnic backgrounds and national origins and their approach to the end of life. New Zealanders are no exception. This country is inhabited and created by people from a broad range of ethnic and cultural origins. Although four fifths of the population is comprised of people from European descent this does not mean that generalizations can be made in their approaches to the end of life.
Necessaries of Life
Dr David Collins, QC
Issue 4, August 2001
The duty to provide "necessaries of life" plays an important role in regulating professional behaviour in a medical setting. The phrase "necessaries of life" has been especially significant in several ethically complex and high profile cases before the New Zealand Courts. We have asked Dr David Collins, QC, a member of the Panel of Advisors for The Nathaniel Centre to explain its importance and legal significance.
Editorial: Compassion - Beyond Constraint
Issue 4, August 2001
One of the themes frequently heard from hospice team members and from those who work in aged-care facilities concerns the constraints placed upon their work of compassion.