The Nathaniel Centre

Book Review: “Dear Life. On Caring for the Elderly” by Karen Hitchcock

Quarterly Essay. Issue 57, March 2015. Black Inc., Schwartz Publishing Pty. Ltd. Collingwood, Australia.

Reviewed by Sue Buckley

Karen Hitchcock is a staff physician at a large Australian city public hospital. In this Essay (short book) she describes how social attitudes towards the elderly shape the way rest-homes, hospitals, and health professionals organise and either limit or extend their care of the elderly. Hitchcock addresses a number of ethical issues – futility, over- and under-treatment, burden, euthanasia, advanced care directives – interspersing these with moving stories of real people and events. These stories are not just dramatic devices but beautifully rendered accounts of interactions she has experienced with her own family members and her patients.

The Essay as a whole challenges current pejorative views of the elderly - the ‘oncoming grey tsunami of the sick and frail’, the ‘swelling ranks of “greedy geezers”’ - but it is especially critical of the attitudes towards the elderly held by some health professionals and how these influence treatment decisions.  If you are old, with two or three organs failing, ‘can no longer negotiate your stairs to go and buy food’, then you are seen as having problems that cannot be cured. These patients, described variously as ‘crumbles’, ‘bed blockers’ or ‘gen med specials’ are not just unwanted in acute hospitals, but if they do arrive they are likely to receive different treatment from younger patients as physicians view their treatment as ‘futile’.  Hitchcock provides some captivating accounts of particular patients and how they responded to treatment when ‘futility’ was overruled.

Hitchcock bravely confronts the costs of treatment while challenging some commonly held assumptions. One that we hear often is that ‘the last year of our lives is when the most health-care dollars are spent’. Hitchcock acknowledges that increasing age and increasing health expenditure ‘go hand in hand’, but points out that this is because there is a greater chance of dying when you are old than when you are young. In fact, the same amount is spent on each death, young or old and, contrary to most commentary, hospital costs associated with the last year of life actually fall with age; data from New South Wales indicates that people aged ninety-five years and over incurred less than half the hospital costs of those who died aged 65-74 years. Responding to critiques that claim the public health system is ‘unsustainable’ and that push for a more private, US-style system, Hitchcock points out that as far as treatment of the elderly goes, ‘free markets lead to over-treatment, while publicly funded systems risk sometimes unexamined and discriminatory rationing’.  She concludes that ‘we need to shift our focus to improving care. It has been limited enough.’

The second half of the Essay deals with dying. It begins with stories of patients for whom decisions about ending treatment needed to be made. The first describes Hitchcock’s own father’s death and the burden of having to make a decision to switch off the machines keeping him alive. The second story tells of an elderly man with severe heart failure who ‘hated hospital’ and wanted to die. Hitchcock describes spending time with him, learning why he no longer wanted to live and finding ways of enabling him to be discharged from hospital to an enjoyable life. The third story describes the admission to hospital of an elderly man with mild dementia who had completed an advance care plan, possibly under the duress of a much younger wife. The wish not to be a burden was prominent in the plan and caused concerns for Hitchcock.  She questions the reliance on advanced care plans which might be made by someone in their seventies but no longer reflect their wishes as they reach their nineties. Impairments once thought of as intolerable may turn out to be bearable after all.  She quotes Thomas Nagel: ‘Does autonomy really give your past self the authority to kill off this later self?’

Hitchcock also questions the reality of the ‘good’ or ‘ideal’ death and challenges the notion that dying at home is preferable to dying in hospital. As she points out, the practicalities of dying at home are often too much for family members and besides, there may be no one at home to look after them.

The essay ends with a challenge to ‘we, the living’ to see ‘the elderly’ as the people they actually are: ‘The elderly, the frail are our society …They worked and loved and lived – and can continue to do so. … Right now we need the resources to care better for the elderly in the institutions we have imperfectly built, and we need deep social transformation so that many more people can live on in their communities and homes. We must remain aware of our ageism in every program and policy we implement.’

This moving essay is written with warmth and elegance and discusses some important ethical issues with clarity and practical wisdom. Its questioning of many current assumptions about the elderly and how they should be treated is well-timed given the upcoming challenges to our health and care systems from an aging population.

Sue Buckley is a researcher for The Nathaniel Centre

Age Discrimination

Kevin McGovern

Like The Nathaniel Centre, the Caroline Chisholm Centre for Health Ethics is a Catholic bioethics centre. We are based in Melbourne, the capital city of the Australian state of Victoria. Every year, the Chisholm Centre hosts a one-day conference which explores a significant issue in health and aged care. On 7 October 2015, our annual conference was on ageism or age discrimination.¹ This article reports some of the key insights from that conference.² It has three parts. The first explores age discrimination. It defines what age discrimination is, and surveys some of its various manifestations. The second part of this article overviews important Catholic teaching about ageing and age discrimination. As we will see, as well as critiquing age discrimination, Catholic teaching offers a positive vision of ageing and the contribution which older persons can and should make. Finally, the third part of this article considers briefly some of the challenges which come to us from this discussion.

I. Age Discrimination

What is age discrimination?

It is hard to say when a person should be classified as ‘old.’ The term ‘older person’ is used to describe someone who is 65 years or older – an age chosen because in recent times it has been regarded as the retirement age.³  Older persons are further divided into the young-old (65–74), the middle-old (75–84), and the old-old (85+).⁴ 

At the Chisholm Centre conference, Judy Gregurke, National Manager Aged Care Reform at COTA Australia, defined ageism or age discrimination as “the stereotyping or discrimination of a person or group of people because of their age.”⁵  There are positive stereotypes, but even these can be problematic. For example, elderly women should not feel pressured or compelled always to be “sweet.” That being said, in Western culture most stereotypes of older persons are overwhelmingly negative, and older persons are regarded as being dependent, frail and incompetent.⁶  These negative stereotypes are expressed both in negative attitudes about older persons and in negative behaviours towards them. Age discrimination predominately impacts upon those who are over 65, but it can also affect persons considerably younger than this.

Particularly when this is an ongoing experience, age discrimination can have a profoundly negative effect on older persons. They can internalise the ageist messages, and come to believe that they are indeed dependent, frail and incompetent. This self-deprecation, in turn, leads to poorer health, diminished wellbeing, and reduced mental ability.⁷  It can also diminish the older person’s motivation to be an active member of society. This in turn can lead to social isolation, which further diminishes the individual’s health and wellbeing.⁸

Research reported by the Australian Human Rights Commission in 2013 found that 71% of Australians felt that age discrimination was common in Australia. 35% of Australians aged 55 to 64, and 43% of Australians aged over 65 reported having experienced discrimination because of their age. This included being turned down for a position, being ignored, and being treated without respect. It also included service invisibility (as service people ignored them), relationship invisibility (as they were made to feel a burden in a relationship), and cultural invisibility (with people like them not being represented in popular culture).⁹  

Denigration, exclusion, and abandonment

There is a certain dynamic to age discrimination. It begins with the denigration that flows from negative stereotyping, whereby older persons are regarded as dependent, frail and incompetent. The logic is then that we do not need to include older persons, for such incompetent people would have little or nothing to contribute. This in turn leads to their exclusion from positions of influence, including employment (see below). However, it also includes the exclusion of older persons from important social, cultural and political decision-making processes and forums at the local, regional, national and international level. It even includes their exclusion from processes and forums which make decisions about older persons.

When older persons are excluded in this way, society as a whole is disadvantaged. Older persons have a privileged position in remembering our history. They remind us where we have come from, and therefore who we are, and where we are heading. When all this is forgotten, we can lose our way as a society. Our society suffers when this happens, and all of us are disadvantaged. Older persons are particularly disadvantaged when they are excluded from the processes and forums which consider their own care.

The ultimate outcome of the dynamic of age discrimination is the abandonment of older persons, as those who are already denigrated and excluded are denied the resources that they need to live a meaningful life. While this dynamic continues in society, any talk of legalising euthanasia and assisted suicide is particularly fraught. Might those who are already denigrated, excluded and abandoned ‘choose’ euthanasia as the only way out? Indeed, might euthanasia be the ultimate form of abandonment?

It must be stressed that there is nothing inevitable about any of this. Traditional societies usually have great respect for their elders. The negative dynamic has developed in Western societies because of choices which we have made. As our societies have become more materialistic and consumerist, a utilitarian calculus has taken over. This calculus places great value almost exclusively on economic contribution, devaluing all the other ways that people contribute to society. We need to remember that this utilitarian culture has arisen because of choices which we have made, and it can therefore be reversed if we make other choices.

Workplace discrimination

One place in which age discrimination occurs is the workplace. Older workers are generally experienced and productive, hard-working and reliable. However, persistent negative stereotypes lead to discrimination against them. A 2013 Australian report found that 1 in 10 business respondents had an age above which they did not recruit, with the average age being 50 years. Further, 29% of business decision-makers believed that older employees had difficulty adapting to change; 36% believed that older employees were less likely to be promoted; and 50% agreed that older employees were at higher risk of being made redundant.¹⁰

25% of Australian workers over the age of 50 report that they have experienced workplace discrimination. More than 80,000 Australians over the age of 50 are unemployed, and workplace discrimination is a significant factor in this. If only 5% more people over the age of 55 had jobs, the Australian economy would be $A48 billion better off.¹¹ 

In New Zealand, a 2014 Human Rights Commission report on the Ageing Workforce found that two in five (40%) older workers had experienced age related discrimination in the past 5 years. Similar proportions (46%) of workers (of any age) have witnessed it over this time period. The discrimination is most commonly manifested in the form of withholding interesting tasks, reduced access to promotions and bullying.¹²

Ignoring the contributions of older persons

Older persons contribute to the community in many ways. Most of these contributions, however, do not involve financial payment or the exchange of money. For this reason, the utilitarian calculus of the dominant materialistic and consumerist culture has difficulty in both recognising and valuing these contributions. In this section, we will highlight some of these contributions. Further, to prevent these contributions being undervalued, we will assign economic value to them.

Older persons provide a lot of care. Some are primary carers, perhaps of their spouse, a disabled adult child, or sometimes their own grandchildren. Many are informal carers, caring for family and friends, and particularly providing child care to their grandchildren. The economic value of the informal aged care provided by older Australians in 2015 was about $A60.3 billion. In 2014, Australian grandparents provided child care to 837,000 children. Indeed, they provided more child care than was provided by formal or paid carers. Older persons also contribute as volunteers. Without financial reward, their contributions often draw on a lifetime of skill, experience, and wisdom.¹³  In 2010, 2.9 million Australians over 65 were involved in volunteer work.¹⁴  In 2006, 5.4 million Australian volunteers (including many older persons) provided services equivalent to 454,000 full-time jobs.¹⁵  Older persons also provide peer support, visiting and befriending other older persons. When so many older persons are socially isolated, this is a very significant contribution which enhances what is called social capital.¹⁶

Moving beyond these merely economic measures, we should also recognise and celebrate important features of the contribution of many older persons. Many have reached a place of genuine altruism, where they are able to give without any thought of return. As we noted above, they are also able to draw on a lifetime of experience. Further, they are the memory of society, reminding us where we have come from, and therefore who we are, and where we are heading. This is of particular importance when older persons contribute to social, cultural and political decision-making processes and forums at the local, regional, national and international level. Finally, drawing on both their lifetime of experience and their early socialisation in a kinder and wiser time, older persons often offer us a more complete vision of life.¹⁷ These are very valuable contributions indeed.

Elder abuse

Sadly, we must recognise that older persons who can be denigrated, excluded and abandoned are sometimes also abused. Elder abuse is committed by someone with whom the older person has a relationship of trust, such as a partner, family member, friend or carer. It can be physical, social, financial, psychological, or sexual, and can include mistreatment and neglect. Its most common forms are financial abuse and psychological/emotional abuse.¹⁸ Data from the World Health Organisation estimates that 1 in 10 older persons experience some form of elder abuse every month.¹⁹

The victims of elder abuse are predominately older women, particularly those who are very dependent and socially isolated. Sadly, about 90% of perpetrators are family members.²⁰ In the finance industry, elder financial abuse is somewhat ironically called “inheritance impatience.” It can involve significant amounts of money. For example, in the 2013–14 financial year, the Elder Abuse Prevention Unit in the Australian state of Queensland assisted 139 older people who together had lost a total of $A56.7 million.²¹ 

In New Zealand, most research estimates that 2 to 5 percent of the older population may be victims of elder abuse.²²  Age Concern reports that it receives more than 2,000 confirmed referrals each year of older people facing abuse or neglect.²³  If, as estimated, only 16 percent of the actual number of abuse incidents reach service agencies,²⁴  this means that the likely number of elderly people subject to abuse is greater than 12,000. A study of respite care patients and caregivers in England found that 45% of caregivers admitted either verbal (41%) or physical abuse (14%).²⁵

II. Catholic Teaching

This is a necessarily brief overview of some of the more important Catholic statements about age discrimination. These statements, while critiquing age discrimination, also offer a positive vision of ageing and the contribution which older persons can and should make.

The best short statement of the Church’s positive view of older persons is perhaps found in paragraph 222 of the Compendium of the Social Doctrine of the Church. It recognises the positive contribution that older persons can make in the workplace, in the family, and in all of society. It therefore calls everyone to pay “generous attention” to them, and to see them as “partners in shared projects.” It also calls us to care for the needs of older persons, particularly those who are most frail and most marginalised. It quotes Psalm 92 to present the Church’s vision and hope for all older persons: ‘They still bring forth fruit in old age.’²⁶

Below, we will look at statements from the last three popes, along with the Church’s contribution to the UN International Year of Older Persons in 1999.²⁷

John Paul II

On 23 March 1984, Pope John Paul II addressed 8,000 older persons who had gathered from the dioceses of Italy. He described old age as “a time of life which is humanly and spiritually fruitful.” He reminded the assembled older persons, “You still have a mission to fulfil, a contribution to make.” He stated clearly, “According to the divine plan, each individual human being lives a life of continual growth, from the beginning of existence to the moment at which the last breath is taken.”²⁸  John Paul’s vision of old age is at once an inspiration and a challenge to older persons – and to all of us.

UN International Year of Older Persons

1999 was the United Nations International Year of Older Persons. It was officially launched on 1 October 1998, the International Day of Older Persons. On the same day, the Pontifical Council for the Laity issued The Dignity of Older People and Their Mission in the Church and the World. A year later, on 1 October 1999, Pope John Paul II issued a Letter to the Elderly. The Australian Catholic Bishops also contributed through their 1998 Social Justice Statement, which was titled The Challenge of Ageing.

The document from the Pontifical Council for the Laity is probably the most complete statement of Catholic teaching about ageing and age discrimination. It is just over 10,000 words in length. It has two chapters on the meaning and value of old age, with the first drawing on human insight, and the second drawing on the wisdom of the Bible. It has a chapter on age discrimination and the other problems that older persons can face. It has two chapters (the first general, the second more specific) on the Church and older people. Perhaps its most important sentence is the following: “The Church should heighten awareness of the needs of older persons, not least that of being able to contribute to the life of the community...”²⁹

Pope John Paul wrote to his elderly brothers and sisters as an older person himself. An interesting feature of this letter is his analysis of the Fourth Commandment to ‘Honour your father and your mother’: “Honouring older people involves a threefold duty: welcoming them, helping them and making good use of their qualities.” He also advised young people that “older people can give you much more than you can imagine.”³⁰

Benedict XVI

2012 was the European Year for Active Ageing and Intergenerational Solidarity. Pope Benedict contributed to this year on 12 November 2012 by visiting a home for the elderly in Rome run by the Community of Sant’Egidio. In his speech, he noted that society “dominated by the logic of efficiency and gain” often views the elderly “as non-productive or useless.” Against this, he insisted that human life even “in the years of old age... never loses its value and dignity.” Indeed, he recognised that “the wisdom of life” which older persons hold is “a great wealth,” and therefore that older persons are “a wealth for society,” “a value for society, especially for the young.” Prophetically, he stated, “The quality of a society, I mean of a civilisation, is also judged by how it treats elderly people and by the place it gives them in community life.”³¹ 

Francis

On 28 September 2014, Pope Francis met with about 40,000 older persons and their families. He recognised that “old age is a time of grace,” and that older persons, particularly grandparents, “are entrusted with a great responsibility: to transmit their life experience, their family history, the history of a community, of a people; to share wisdom with simplicity, and the faith itself.” A people who do not take care of its seniors, he warned, “has no future.... because such a people loses its memory and is torn from its roots.” Rather confrontingly, Francis described abandoning older persons in aged care facilities as “actually real and hidden euthanasia.”³²

Francis returned to these issues in his General Audiences on 4 and 11 March 2015. His first speech focussed on the abandonment of older persons and age discrimination; his second presented the Church’s vision of ageing and the contribution of older persons. In his first speech, he criticised a “culture of profit” or a “throw-away culture” which views older persons as a “burden,” and which therefore throws them away. He gave an example of an older woman in an aged care facility who had not been visited by her family for 8 months. Confrontingly, he called this a sin – indeed, he called it a “mortal sin” which could imperil our eternal destiny.³³ 

In his second speech, he insisted that “old age has a grace and a mission too, a true vocation from the Lord.” He particularly called older persons to prayer, suggesting that “prayer is the purpose of old age.” He also spoke of the “mission” or “vocation” of older persons to transmit true values particularly to the young. “How I would like,” he said, “a Church that challenges the throw-away culture with the overflowing joy of a new embrace between young and old!”³⁴

These same themes are expressed in nn. 191–193 of Amoris Laetitia, the recent Apostolic Exhortation on the family. Paragraph 191 is about the abandonment of the elderly and age discrimination. Paragraph 192 is about the role of grandparents and older persons in transmitting both “history” and the “most important values.” Paragraph 193 warns that the “lack of historical memory” is a serious danger for any society. “Knowing and judging past events is the only way to build a meaningful future.”³⁵

III. A Call to Action

There is something in this material to challenge each of us. If we are older, perhaps the most important challenge is to embrace this positive vision of ageing. This may require that we recognise and overcome anything within us which regards ourselves as older persons or the contribution that we make as second-rate or inferior. It may also challenge us to step forward to become involved in significant projects. It probably will ask us to ‘push back’ when we encounter age discrimination: for example, when a sales assistant serves a younger person before us, we may decide to say politely but firmly, “Excuse me. I was here first.”

If we are younger, one challenge is to ensure that older persons are represented in significant decision-making processes and forums. While this is important for every issue, it is particularly important for issues related specifically to older persons. In all cases, we may be surprised how much older persons have to contribute. Another challenge is to befriend an older person or older persons, and regularly to spend time with them. St Pope John Paul II reminds us that “older people can give you much more than you can imagine.”

Reverend Kevin McGovern was Director of the Caroline Chisholm Centre for Health Ethics for 9 years from August 2007 to July 2016. He is now a consultant at the Centre. He is also a member of Australia's health ethics peak body, the Australian Health Ethics Committee.

Endnotes

1. For more on this conference, including reports and photos, our distinguished speakers and their PowerPoint slides, see “The Older Person Today: giving and receiving care,” Caroline Chisholm Centre for Health Ethics (CCCHE), http://chisholmhealthethics.org.au/conference-7-october-2015.
2. I also drew particularly on another article written by a Chisholm Centre researcher, and I commend this article to the reader. For this, see Emanuel Nicolas Cortes Simonet, “Older Persons in Australia: Secular and Catholic Perspectives,” Chisholm Health Ethics Bulletin 20, no. 3 (Autumn 2015): 9–12.
3. David Wiles, “Who is old?: defining old age,” Australian Journal on Ageing 6, no. 4 (1987): 24.
4. Laurence McNamara, “Walking on Three Legs in the Afternoon,” (paper presented at the annual conference of the Australian Catholic Theological Association, Melbourne, 7–10 July 2016).
5. Judy Gregurke, “Older Persons Giving Care,” CCCHE, http://chisholmhealthethics.org.au/system/files/jg_presentation.pdf.
6. Mary Kite et al., “Attitudes Toward Younger and Older Adults: an Updated Meta-Analytic Review,” Journal of Social Issues 61, no. 2 (2005): 241–266 at 245.
7. Jennifer Richeson and Nicole Shelton, “A Social and Psychological Perspective on the Stigmatization of Older Adults,” in When I’m 64, ed. Laura Carstensen and Christine Hartel (Washington: The National Academies Press, 2006), 190.
8. Jon Nussbaum et al., “Ageism and Ageist Language Across the Life Span: Intimate Relationships and Non-Intimate Interactions,” Journal of Social Issues, 61 no. 2 (2005): 287–305 at 294.
9. Australian Human Rights Commission (AHRC), Fact or fiction? Stereotypes of older Australians (Sydney: AHRC, 2013), 4–5, https://www.humanrights.gov.au/sites/default/files/document/publication/Fact%20or%20Fiction_2013_WebVersion_FINAL_0.pdf.
10. Ibid., 8
11. Gregurke.
12. Lonergan Research Pty Ltd, "Ageing Workforce in the New Zealand Crown Entity Sector Survey Report 2014," online at http://superseniors.msd.govt.nz/finance-planning/paid-work/age-discrimination.html.
13. Ibid.
14. Volunteering Australia, State of Volunteering in Australia, 2012, http://www.volunteeringaustralia.org/wp-content/uploads/State-of-Volunteering-in-Australia-2012.pdf.
15. Gregurke.
16. Gregurke; Anne Gray, “The social capital of older people,” Ageing and Society 29, no. 1 (2009): 5–31 at 6. Social capital is “the array of social contacts that give access to social, emotional and practical support” within communities.
17. Pontifical Council for the Laity, The Dignity of Older People and Their Mission in the Church and in the World, 1 October 1998, Holy See, http://www.vatican.va/roman_curia/pontifical_councils/laity/laity_en/archivio/rc_pc_laity_doc_05021999_older-people_en.htm. The Pontifical Council calls these qualities the “charisms of old age.”
18. “Your Rights – Elder Abuse,” Senior Rights Victoria, http://seniorsrights.org.au/your-rights/. 
19. Judith Ireland, “Financial abuse of seniors a problem for all ages,” 19 October 2015, Sydney Morning Herald, http://www.smh.com.au/federal-politics/political-news/seniors-at-risk-of-fraud-financial-abuse-warns-age-discrimination-commissioner-20151016-gkaomk.html.
20. Senior Rights Victoria; Scott Pape, “The dirtiest, slimiest, most heartbreaking scam of them all,” 22 May 2016, Barefoot Investor, https://barefootinvestor.com/the-dirtiest-slimiest-most-heartbreaking-scam-of-them-all/. 
21. Pape.
22. K. Glasgow and J.L.Fanslow, "Family Violence Intervention Guidelines: Elder Abuse and Neglect", Wellington: Ministry of Health. 2006
23. http://www.ageconcern.org.nz/ACNZPublic/Services/EANP/ACNZ_Public/Elder_Abuse_and_Neglect.aspx. 
24. National Center on Elder Abuse, 1998, p. 12, in “Under the Radar: New York State Elder Abuse Prevalence Study,” May 2011, http://www.ocfs.state.ny.us/main/reports/Under%20the%20Radar%2005%2012%2011%20final%20report.pdf.
25. Homer and Gilleard (1990), reported in Acierno et al, “National Elder Mistreatment Study,” March 2009, https://www.ncjrs.gov/pdffiles1/nij/grants/226456.pdf.
26. Pontifical Council for Justice and Peace, Compendium of the Social Doctrine of the Church, n. 222, 2 April 2004, Holy See, http://www.vatican.va/roman_curia/pontifical_councils/justpeace/documents/rc_pc_justpeace_doc_20060526_compendio-dott-soc_en.html.
27. The Australian bishops’ 2016-17 Social Justice Statement will also explore these issues. It is titled A Place at the Table: Social Justice in an Ageing Society. I am honoured to have been invited to launch this statement in September.
28. John Paul’s speech on this day is quoted in John Paul II, Christifideles laici, n. 48, 30 December 1988, Holy See, http://w2.vatican.va/content/john-paul-ii/en/apost_exhortations/documents/hf_jp-ii_exh_30121988_christifideles-laici.html
29. The reference details for this statement are above in endnote 16.
30. John Paul II, Letter of His Holiness Pope John Paul II to the Elderly, n. 12, 1 October 1999, Holy See, http://w2.vatican.va/content/john-paul-ii/en/letters/1999/documents/hf_jp-ii_let_01101999_elderly.html.
31. Benedict XVI, “Visit to the Community of Sant’Egidio’s Home for the Elderly Viva Gli Anziani, 12 November 2012, Holy See, http://w2.vatican.va/content/benedict-xvi/en/speeches/2012/november/documents/hf_ben-xvi_spe_20121112_viva-anziani.html.
32. Francis, “Meeting of the Pope with the Elderly,” 28 September 2016, Holy See, http://w2.vatican.va/content/francesco/en/speeches/2014/september/documents/papa-francesco_20140928_incontro-anziani.html.
33. Francis, General Audience, 4 March 2015, Holy See, http://w2.vatican.va/content/francesco/en/audiences/2015/documents/papa-francesco_20150304_udienza-generale.html.
34. Francis, General Audience, 11 March 2015, Holy See, http://w2.vatican.va/content/francesco/en/audiences/2015/documents/papa-francesco_20150311_udienza-generale.html.
35. Francis, Amoris Laetitia, n. 191–193, 19 March 2016, Holy See, http://w2.vatican.va/content/francesco/en/apost_exhortations/documents/papa-francesco_esortazione-ap_20160319_amoris-laetitia.html.  

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