The Nathaniel Centre

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

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

Submission to the Justice Select Committee: End of Life Choice Bill

Staff of The Nathaniel Centre

Our Position

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.

Background Comments

1. 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.

2. 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
   

Terminology

3. 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.

4. 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

5. 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.

6. 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.

7. 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)

8. 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.

9. 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.”

10. 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

11. 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.

12. 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.

13. 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.

14. 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.

15. 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

16. 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.

17. 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

18. 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.

19. 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

20. 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.

21. 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.

22. 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

23. 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.

24. 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.

Overseas Jurisdictions

25. 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

26. 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

27. 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

28. 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

29. 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.

30. 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.

31. 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

Polls

32. 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

33. “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.

34. 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’.

35. 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.’

Conclusion

36. Euthanasia and assisted suicide are not part of healthcare and contravene medical ethics.

37. 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.

38. 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.

39. 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.’

40. 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.

41. ‘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 ‘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

Endnotes

Euthanasia and the Common Good

Charlotte Paul

 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/

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:

1. Imprecise terminology 
2. 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
3. Broad and vague criteria around eligibility
4. Unbearable suffering is determined against subjective measures 
5. An absence of effective safeguards, particularly measures to detect and prevent coercion
6. 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
7. Potentially negative consequences for those with mental illness and persons with a disability
8. 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.

1. 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? 
2. 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.
3. 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. 

4. 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.

Making death easier makes life harder

What an absolute waste of the grandchildren’s college money!'

Richard Stith

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/

Advance Care Planning: Q&A for Faith Communities

by Noel Tiano

What is Advance Care Planning?

Advance Care Planning (ACP) is a “process of exploring what matters to you when thinking about end-of-life care, and sharing that information with your loved ones and health care team so treatment and care plans can support your wishes.” It can include “what is meaningful to you, such as people and pets, your values and the ways you would like those caring for you to look after your spiritual and emotional needs. It will also tell your loved ones and medical staff about the treatment and care you want if you are no longer able to tell them yourself.”

An Advance Directive (AD) which is a “consent or refusal to a specific treatment(s) which may or may not be offered in the future when the patient loses capacity to make healthcare decisions,” may form part of an Advance Care Plan.

What is the legal standing of Advance Care Plans and Advance Directives?

The New Zealand Bill of Rights Act guarantees the right of individuals to refuse medical treatment. According to New Zealand’s Code of Health and Disability Services Consumers’ Rights, Advance Directives can be written or oral instructions, specifying a decision to receive or refuse future health care procedures, including life sustaining treatments such as respirators and resuscitation. A valid Advance Directive is legally binding, but only becomes effective in circumstances where a person is unable to make decisions for themselves.

Both ACPs and ADs need the following criteria to be valid:

• Voluntary
• Informed consent
• Decision-making capacity
• Applicable to present circumstances

We live in a world where, in spite of our best intentions, complications may arise due to differences in expectations, communication breakdown and unforeseen events. Advance Care Planning conversations can bring patients, families and providers on the same page as regards care at the end of life.

If your Advance Directive indicates a particular preference, will that be followed?

The fact that a person requests a medication or intervention does not necessarily mean that their request will be granted: the procedure may not be medically indicated; there might be a lack of resources available such as an organ for transplantation; the request may be unethical. In real life, people’s choices need to be balanced by considerations of distributive justice and cultural/ community interests.

Can an Advance Care Plan be changed?

A person can change, void, or update their ACP at any time. A periodic review of ACPs as well as wills and EPAs is suggested, especially when experiencing major changes such as the death of a spouse or partner, separation/divorce, migration, etc. What does Catholic teaching say about end of life care?

Catholic teaching recognises that there are limits to the duty to maintain life and restore health:

“When inevitable death is imminent ... it is permitted in conscience to take the decision to refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted.” (US Conference of Catholic Bishops, 2006). The rationale for this teaching is spelt out in the Catechism of the Catholic Church: “Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the 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.” (# 2278) The modern hospice movement, founded by Dame Cicely Saunders, takes a holistic approach to caring for those with lifelimiting conditions that incorporates a person’s physical, mental, social and spiritual needs.

What does a Māori approach to Advance Care Planning look like?

The Northland DHB developed a Māori ACP model called He Waka Kakarauri as a way to engage Māori in Advance Care Planning. This can be found at their website at www.northlanddhb.org.nz

I’m ready to work on my Advance Care Plan. How do I start?

Please visit: www.myACP.org.nz

Concluding thoughts

Advance Care Plans provide the opportunity for patients and their whānau to engage in caring conversations about their values, beliefs and practices when facing a life-limiting health condition. While some deaths can be sudden, others are drawn out. Hence, it is imperative to give people ample time to talk about their care plans - their hopes, fears, spiritual needs and other preferences. ACPs can cover retirement, residential care options, palliation, comfort measures, complementary therapies such as music and arts, organ donation, funerals, wills, and enduring powers of attorney.

The complexities of end of life care will continue to increase as cultures and societies change. While ACPs are not a cure-all for all the challenges thrown up by the complexities we encounter at the end of life, nevertheless, such conversations are important steps in promoting patients’ rights and responsibilities. ACPs are meant to enhance future health planning by improving care for the dying through shared decision making.

I strongly recommend writing and dating your ACPs and sharing them with your doctor, family and loved ones.

The goal of care is to cure sometimes, to treat often, to comfort always. (Hippocrates)

Noel Tiano (ThD, MSCW) is a community social worker at Mary Potter Hospice in Wellington.