The Nathaniel Centre

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.

Available online at: https://www.theguardian.com/cities/2016/apr/26/london-old-people-no-past-future-elderly

The Abbeyfield concept

Hilary Stace

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.

 

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 20^thand 21^st 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

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

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.

Concluding comments
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 52^nd 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.

Endnotes

 

[1] http://www.doctorssayno.nz/

[2] Fourth Annual SOARS Lecture (London – September 20, 2013). http://www.soars.org.uk/index.php/pages

[3] William L. Toffler. “A Doctor-Assisted Disaster for Medicine”. Wall Street Journal (online)Aug 17, 2015.

[4] http://www.livinganddyingwell.org.uk/comments/assisting-suicide-is-not-a-role-for-doctors

[5] https://www.wma.net/policies-post/wma-resolution-on-euthanasia/

[6] https://www.nzma.org.nz/__data/assets/pdf_file/0004/16996/Euthanasia-2005.pdf

[7] http://palliativecarewa.asn.au/site/wp-content/uploads/2014/03/ANZSPM-Position-Statement-on-Euthanasia-and-Assisted-Suicide.pdf

[8] http://www.pcnnz.co.nz/wp-content/uploads/2016/05/Euthanasia-position-statement-2012.pdf

[9] http://www.bgs.org.uk/ethicslaw/subjectreference/ethicslawcapacity/position-assisted-suicide

[10] http://www.livinganddyingwell.org.uk/comments/assisting-suicide-is-not-a-role-for-doctors

[11] Board Members of the EAPC., "Euthanasia and Physician-Assisted Suicide: A White Paper from the European Association for Palliative Care." Palliative Medicine (2015).

[12] Boudreau, J. Donald, and Margaret A. Somerville. "Euthanasia is not medical treatment." British medical bulletin 106.1 (2013).

[13] Ibid.

[14] Randall, Fiona, and Robin Downie. "Assisted suicide and voluntary euthanasia: role contradictions for physicians." Clinical Medicine 10.4 (2010): 323-325.

[15] Stevens, Kenneth R. "Emotional and psychological effects of physician-assisted suicide and euthanasia on participating physicians." The Linacre Quarterly 73.3 (2006): 203-216.

[16] 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.

[17] Yang, Y. Tony, and Farr A. Curlin. "Why physicians should oppose assisted suicide." Jama 315.3 (2016): 247-248.

[18] 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.

[19] 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.

[20] 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.

[21] 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.

[22] 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.

[23] https://publications.parliament.uk/pa/ld200405/ldselect/ldasdy/86/8609.htm at 223.

[24] Jacobs, Elizabeth A., et al. "Understanding African Americans' views of the trustworthiness of physicians." Journal of general internal medicine 21.6 (2006): 642-647

[25] Report to Aboriginal Reference Group: Rights of the Terminally ill Act Education Program, at 1 (July 23, 1996).

[26] https://thespinoff.co.nz/society/18-07-2017/assisted-dying-devalues-the-disabled/

[27] https://hansard.parliament.uk/Lords/2014-07-18/debates/14071854000545/AssistedDyingBill(HL)#contribution-14071854000185

[28] http://notdeadyet.org/2017/08/carol-cleigh-sutton-i-oppose-assisted-suicide-and-euthanasia-because-it-is-ableist.html

[29] 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.

[30] http://www.artsandopinion.com/2006_v5_n4/somerville-2.htm 

 

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

General Discussion

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.

 

Our Response

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.

 

Deprivation

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.

 

Conclusion

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.   

 

 

Endnotes

[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 

[1] See https://www.mentalhealth.org.nz/get-help/a-z/resource/13/depression

[2] 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.

[3] Glasgow, K., and Janet Fanslow. (2007). "Family violence intervention guidelines: Elder abuse and neglect." Wellington: Ministry of Health.

[4] http://www.ageconcern.org.nz/ACNZPublic/Services/EANP/ACNZ_Public/Elder_Abuse_and_Neglect.aspx

[5] https://www.ageconcern.org.nz/ACNZPublic/Services/EANP/ACNZ_Public/Elder_Abuse_and_Neglect.aspx#howmuch

[6] 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. 

[7] 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. 

[8] 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.

[9] 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. 

[10] Department of Corrections. Department of Corrections 2015/2016 Annual Report. Wellington.

[11] ibid n.d., p. 63.

[12] 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.

[13] Gill, C. J. (1992). Suicide intervention for people with disabilities: a lesson in inequality. Issues L. & Med., 8, 37

[14] Ministry of Health. (2016b). Suicide Facts: Deaths and intentional self-harm hospitalisations: 2013. Wellington: Ministry of Health. P.19.

[15] Ministry of Health. (2016b). Suicide Facts: Deaths and intentional self-harm hospitalisations: 2013. Wellington: Ministry of Health. P.20.

[16] Ministry of Health. (2016a). Office of the Director of Mental Health Annual Report 2015. Wellington: Ministry of Health.

[17] 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.

[18] 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.

[19] 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

[20] 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

[21] https://www.cbs.nl/en-gb/news/2016/26/more-suicides

 

 

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.

_________________________________ 

Endnotes

1. See http://www.ssc.govt.nz/hdu-bps-case-study-oct13

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

3. See http://www.stuff.co.nz/national/crime/9738841/Older-inmate-numbers-rise

4. See http://palliativecare.org.au/palliative-matters/frail-elderly-prisoners-put-new-pressure-on-prisons/

5. Ibid.

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

7. See http://palliativecare.org.au/palliative-matters/frail-elderly-prisoners-put-new-pressure-on-prisons/

8. See http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11740849

9. See http://www.stuff.co.nz/national/health/92290197/Allowed-home-from-prison-to-spend-her-last-days-with-her-family-Vicki-Letele-gives-her-final-interview

10. See http://www.corrections.govt.nz/resources/newsletters_and_brochures/corrections_works/2014/march_2014.html

11. See State Services Commission, http://www.ssc.govt.nz/hdu-bp70 2004 2014s-case-study-oct13

 

 

 

 

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.

 

Endnotes

1. Hughes, Nathan. "Nobody made the connection: The prevalence of neurodisability in young people who offend." (2012).
2. 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
3. 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.
4. Ludbrook, M. Youth Therapeutic Programmes. A Literature Review. Wellington: Department of Corrections, 2012.
5. Lambie et al., ibid., p. 23.
6. The Werry Centre, ibid., P. 26.
7. Ibid., p. 57.
8. Ludbrook, ibid., p. 3.
9. Maxwell, Gabrielle, and Allison Morris. "Youth justice in New Zealand: Restorative justice in practice?" Journal of Social Issues 62.2 (2006), p.243.
10. The Werry Centre, op.cit., p. 84.
11. Ibid., p.75.
12. 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.
13. Ibid., p.107.
14. Maxwell et al., p.257.