Monday, April 4, 2011

A Disability Perspective on Euthanasia

Erik Leipoldt sent me the following statement from Australia:

Australia is facing a tsunami of euthanasia Bills. The first to come up is the Criminal Law Consolidation (Medical - Defences) - End Of Life Arrangements Bill 2011 in South Australia.

A comprehensive Disability Position Statement On Euthanasia and Physician-Assisted Suicide was developed by a group of people who have direct experience of living with disability or chronic illness in their lives.

Please read and support the statement by leaving a comment. 
See the Statement here (I have reprinted the statement in full):

Disability Position Statement on 
Euthanasia and Physician-assisted suicide in Australia - March, 2011

• We are Australians who live with a disability (1) or chronic illness, directly, and/or by our close involvement with people with disabilities/chronic illness, as family, friend or ally.

• We are concerned that euthanasia and physician-assisted suicide (PAS) (2) legislation may be introduced in this country that allows the intentional shortening of life, including on grounds that life with disability is not worth living.

• We oppose the introduction of euthanasia and physician assisted suicide legislation because it is inherently wrong to end a life in answer to suffering (3). This is especially so in absence of the many things we, as a rich society, can do to alleviate suffering.

• We believe that much ‘suffering’ is not primarily caused by a person’s disability or medical condition. It often arises from inadequate care and support, contributing to requests for euthanasia or PAS.

• We believe that state-sanctioned euthanasia and physician-assisted suicide poses great risks to life and well-being of people with disabilities, in particular to highly vulnerable (4) disabled people. It would undermine any social climate of support and life-giving values that they need to live good lives.

• It is a matter of social justice for the status of people with disabilities in our society to be duly considered in this matter (5).

Yes to good quality care and support
No to euthanasia and physician assisted suicide.

Pro-Living calls for…

A halt to introduction of euthanasia and physician-assisted suicide Bills and the development of social policy that:

• Meaningfully supports people with disabilities and those who assist them, to live good lives (6) in the community, where good quality community, health and palliative care service is widely available;

• Affirms disability as a normal part of life in all its diversity;

• Affirms the human worth of people with disabilities as equal to all other human beings;

• Recognises their real needs, takes responsibility for meeting them, does so competently, and in participation with the focal person with a disability, to the fullest extent.

Pro-Living Endorses…

• The Palliative Care Australia Position Statement on Euthanasia and Physician-assisted Suicide (7) with the proviso that acquiring any disability does not of itself indicate “an approaching end of life”.

• The Australian Disability Strategy’s (2011) stated intent of full inclusion of people with disabilities into society, based on the UN Convention on the Rights of Persons with Disabilities. However, ProLiving believes that the acknowledgement of people with disabilities as interdependent should be a guiding principle, rather than regard pursuit of independence as primary.

Pro-Living Believes…

The role of quality disability support is critical
Much community interest in voluntary euthanasia involves fear of pain and suffering, especially that of “loss of dignity” through increased dependence on others, sometimes through the most basic of assistance, such as with toileting, showering and dressing. Where good quality support is provided, many people with disabilities live well with those realities on a daily basis (8). We are not claiming that therefore everyone should do likewise. We merely point to the fact that good quality care is a potent remedy against suffering and fears of suffering and preserves dignity. It contributes to a civil society where those who embody fears about aspects of life, such as fragility, loss of personal control and dependence, are treated as inherently worthy.

Fear of disability may lead to euthanasia
Because of the existence of such fears in our community, and the generally low social worth accorded to people with disabilities, life with disability is easily conflated with that of meaningless, and unbearable suffering. A low ‘quality of life’ is often assigned to living with a disability. This perception makes them vulnerable to being viewed as eligible for euthanasia and physician-assisted suicide, rather than call for good care and support.

Fear of inadequate care and support underlies some euthanasia requests
Fears of a presently inadequate care and support environment, for example ‘ending up in a nursing home’, or ‘stuck on a tube’, also underlie community support for laws that allow the intentional ending of life under such circumstances. The causes of these realistic fears are human-made. They must be addressed at that level by attention to the development of widely available, quality care and support.

About access to quality care and support
We acknowledge that in an imperfect world there may never be enough care and support to address all suffering. At the same time we assert that our wealthy country can and ought to do much more in offering quality care and support than it presently does. By this we do not primarily mean providing more money. We aim for the development, in genuine participation with disabled people and their supporters, of the best possible quality approaches to meeting their needs. Without such quality, and available support in place, it is irresponsible to legislate for euthanasia and PAS as we presently do not attend to all the reasons for people requesting euthanasia. "Unrelievable suffering?"

There are no effective safeguards against abuse of legalized euthanasia and PAS
Long accepted and legal euthanasia practice in the Netherlands (9) and in Oregon (10), as well as more recently in Belgium (11), give no reason for confidence in believing that euthanasia and physician assisted suicide can be properly regulated. To the contrary, they show the inevitability of a widening of eligibility criteria for assisted death beyond terminal illness, beyond ‘pain’, and beyond the person’s own autonomous request. Assisted by expert advice, parliamentary inquiries in the UK, Canada and US have all concluded that effective safeguards are not possible (12).

So-called ‘narrow’ euthanasia Bills, focused on terminal illness and pain, are no safeguard. They are merely a foot in the door to wider criteria, prompted by inevitable calls for additional ‘suffering’ to be treated with ending of life, as the many attempts for such widely constructed Bills show (13).

Illegal euthanasia is no rationale for legalization
Undoubtedly illegal intentional ending of life where life is considered not worth living in our healthcare institutions is happening today (14). We believe that the answer to this situation is to pay attention to better quality and safeguards in care, and safeguards against abuse, not to sanction medically assisted suicide by legalising it.

Changing the doctor-patient relationship
If choosing to have medical assistance to end one's life becomes a legal option it will have to presented as an option to people with chronic illness or disability who meet the requirements, as their right. Such an offer from health professionals would dramatically change the doctor-patient relationship and our dependence on their medical support in living our lives in good health. Many people with disabilities also depend on doctors for many social benefits, allowances and subsidies, where doctors are gatekeepers. Given research, showing a high level of negative attitudes towards disability, the roles of healer, gatekeeper and life terminator provide such tensions and conflicts of interest that the doctor-patient relationship is severely eroded by it. This further adds to a high vulnerability of people with disabilities.

Putting us out of our misery
Under a requirement of being offered euthanasia, as a legal option, our lives as disabled people would be contingent on our will to keep living in the face of the possibility that carers and family members may be thinking that we should take the option available, and our fear that we should put ourselves out of their misery in having to cope with us.

Euthanasia undermines civil society
Huge and unprecedented social, environmental and economic changes are upon us, in the form of the effects of climate change. In a society under pressure, where the response to suffering is sanctioned as killing the sufferer, presently highly vulnerable people are increasingly at risk of being treated as cumbersome, unproductive burdens, beginning with a reduction in their entitlements from the public purse, and ending with an obligation to remove themselves from the planet. On the other hand, a truly caring society, with an eye for the realities of dependence, fragility, and limitations in life, will be inclusive and socially sustainable.

Equal human worth
All people with disabilities are equally worthy to any other human being, possessing a meaningful and purposeful life by virtue of their own potential to grow as a human being, whether or not the nature and rate of that growth or its potential can be readily discerned. They should be treated accordingly, in the best spirit of care.

Disability is a normal part of life
Disability is inherent in the diverse experience of the human condition. Anyone of us appear on a scale from dependent to ‘independent’, rational to non-rational, able to less-able at any one time in our lives. A pro-living disability perspective on euthanasia is therefore relevant, and of value to all.

Autonomy, choice and independence
Much of the euthanasia debate revolves around rights to exercising personal choice. While it is true that people with disabilities are trying to rise up from very low levels of personal autonomy and choice, it is quite another thing to let respect for these principles decide in favour of euthanasia. Especially when they are being denied autonomy and life choices in a range of important areas. Many people with disabilities need better and real choices about needs like health, accommodation and work: a better life balance in other words. Independent living in disability means living in an ordinary home, with support, in a community: enjoying relationships, not being isolated. Many people with disabilities are limited in their capacity to be an autonomous human being because of cognitive impairments or mental illness. This renders autonomy a principle of limited value in euthanasia. It also means that such people with disabilities, who are thus impaired in judgment, are vulnerable to involuntary or nonvoluntary euthanasia by those who want to address suffering through euthanasia in a broad sense. Autonomy, like independence, is actually an illusion in the lives of many people with disabilities (15).

Engagement, not polls
Currently the debate is driven by polls that ask quick, simplistic questions on complex issues, involving end of life support. Disability, as is death, dying and responses to them, are mostly poorly understood by the community (16). A variety of ways of engaging with those realities must be explored, in the interests of a meaningful debate and ongoing safeguard to human wellbeing. No legislation should be passed on uninformed, uneducated assumptions.

Some context
While some progress has been made, a broadly socially devalued status for people with disabilities in Australia exists. This has resulted in their exclusion from many pursuits that are regarded as normal in our country. These include activities that people in the community typically do, for example, work, attend school and university, participate in social activities, maintain familial relationships, live in regular housing, and use public transport. Those whose impairments raise the greatest challenges to participating in these ways, such as some with significant mental illness, cognitive impairment and dementia, are among those with the highest vulnerability to abuse and covert life-ending now. Under any euthanasia law they would be more so, sooner or later.

Aside from vulnerability through their exclusion, people with disabilities are among groups in Australian society that are highly vulnerable to isolation, neglect and abuse. Negative assumptions about (people with) disability are endemic. Hate crimes against them continue (17). Their voice is rarely heard and good disability advocacy is under-supported. Many lack the adequate care and support needed for them to live good lives and reflect their human worth as equal to anyone else. The Commonwealth Government’s Shut Out report (2010) (18) for example found 56% of its respondents revealed disability support services themselves presented “barriers” in their lives. Many are still excluded from work, often cannot get good support and live in poverty.

More than half the submissions received (56 per cent) identified exclusion and negative social attitudes as critical issues. People with disabilities and their families, friends and carers reported daily instances of being segregated, excluded, marginalised and ignored. At best they reported being treated as different. At worst they reported experiencing exclusion and abuse, and being the subject of fear, ignorance and prejudice.
(Shut Out report (2010), p.7)

Proponents of euthanasia and physician-assisted suicide often characterise disability experience as unbearable suffering and a burden that should by extension be eligible for treatment by euthanasia (19). Where people with disabilities do suffer, this is often the result of their social exclusion and inadequate care and support. Their suffering is not primarily, or inherently found in the nature of their impairments, as it is often misrepresented. Such realities make people with disabilities highly vulnerable to effects of legalized euthanasia (20).

Impairment is a normal part of the human condition. Currently some one in five Australians has some sort of disability. This means not only that anyone is prone to acquire a disability at any time but that those factors that are part of disability experience are equally valid for any of us.

Until Australians are assured of the best palliative care, community services and advocacy, we will not truly know the extent to which suffering can be relieved.

...the lives of many people with disabilities are awful. (...) Only when we improve the quality of the lives of those people will we be able to ascertain whether they want euthanasia because they think life with a disability is worthless or because they think it is awful (Parsons & Newell, 1996, p. 54 , reporting Ann McDonald’s view on euthanasia. Anne lived in appalling institutionalised conditions as a child with disability).

We have reason to fear that a medical view of disability still persists (21), while that same medical, and allied, professions are often gatekeepers to disability entitlements and play a central role in euthanasia. At the same time there is evidence of substantial emotional and psychological damage to doctors themselves when participating in euthanasia (22). This is not a sign of a socially ‘good’ practice.

A growing application of market-economics to community services reduces the notion of heightened vulnerability of many people with disabilities, as arising in significant part from effects of negative attitudes, to one of ‘market failure’. This concept results in values-free financial and managerial remedies to such failure, letting those in charge off the hook in addressing attitudinal causes and quality in service. A business-like focus on effectiveness and efficiency in meeting ‘demand’, results in cost-benefit analysis of service where genuine needs are not necessarily met.

A joining of a medical view of disability and a market view of life are serious threats to the lives and wellbeing of people with disabilities, when they not meet a medical benchmark of ‘quality of life’, or the primarily valued status of contributor to the economy.

An ageing population, increase in disability, and over population are developing as significant problems. So are the emerging social, environmental and economic effects of climate change. We have reason to fear that in a culture that accepts euthanasia and PAS as legitimate responses to suffering, such developments will put further pressures on good care, support and rights to life of such people as ‘unproductive burdens.’ (23)

Our society is at a crossroads in deciding whether to emphasize our culture as one that cares, or kills.

Reference Points

Making statements about end of life issues carries responsibility. ProLiving therefore makes every effort to support its arguments with evidence - something too often lacking in the high emotions involved in this debate. While the issues are seldom black and white and involve personal values, empirical and anecdotal information does help. The reference points provided here are not intended as exhaustive.

1 We understand ‘disability’ as created from the interactions of impairments (physical, cognitive, mental, sensory), social and personal values and attitudes and environmental barriers. This understanding is compatible with view of disability taken in the UN Convention on the Rights of Persons With Disabilities (UNCRPD).

Furthermore we not orthodox on a particular ‘correct’ term describing people who are disabled in the above described interactions. We use “people with disabilities”, “disabled people” and “people with disability” interchangeably in this position paper. They are not pejorative and everyone knows what they mean.

2 “Euthanasia” and “physician assisted suicide” can be treated as having distinct meanings but can also be used interchangeably. Either can be done or facilitated by a medical doctor, allied health professionals, like nurses, or family members. Furthermore one could describe sub categories of active or inactive, voluntary, involuntary or non-voluntary euthanasia, where it usually, but not necessarily carried out by a physician, whether one terminally ill or not. The term “mercy killing” is also used.

In this position paper, euthanasia and physician assisted suicide are both covered by this definition:

An intervention or non-intervention by one person, to end the life of another person, who is terminally ill, for the purpose of relieving suffering, with the intent of causing the death of the other person, except where the primary intent is either to provide treatment necessary for the relief of pain or other symptoms of serious physical distress, or non-provision or withdrawal of treatment is justified, in particular, because there is a valid refusal of treatment or the treatment is futile. Somerville, M.A. (1993). The song of death: The lyrics of euthanasia. Reprinted from The Journal of Contemporary Health, Law and Policy, 9, 10–76.

3 Euthanasia is usually proposed as an act to address suffering. Such suffering can be identified as pain, futile medical interventions, fear of loss of dignity, existential pain or even being ‘tired of life.’ Whereas euthanasia proponents may use disability experience as suffering which warrants a right to euthanasia, the vast majority of people with disabilities see their experience as just a part of the variety of life. That experience does not call for euthanasia but for good support.

4 All human beings are vulnerable. A bus could hit, illness could strike. One might be sacked. People with disability are often much more vulnerable to ill effects on their health, personal safety, employment, housing, through combined effects of impairment, social attitudes and environmental barriers. This follows from adopting the above-described definition of disability. A large body of research exists, describing their grossly disproportionate collective experience of exclusion, abuse, neglect, poverty, ill-health and incarceration. Whereas “dependent” or “vulnerable” is at times used as a pejorative label, heightened vulnerability for disabled people is a fact of life and should be understood for its causes. Any pejorative use should be addressed at the level of those using it in this way.

States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.

6 A ‘good life’ for people with disabilities means having opportunities in being supported towards achieving one’s individual potential to be the best one can be and to minimize harm to the person. This includes being part of a community or communities, involving a sense of belonging and contribution, living, working and playing - being fully welcomed - alongside everyone else. A good life is not a segregated and congregated life.

8 Gill,G. (2001). Divided understandings: The social experience of disability. In Albrecht,G,L.,Seelman,K,D., & Bury, (Eds.). Handbook of disability studies. Thousand Oaks, CA: Sage Publications.

See also Rapley,M. (2003). Quality of life research: a critical introduction. Sage Publications. London.

9 See comments expressing concern of The United Nations Covenant on Civil and Political Rights Concluding observations of the Human Rights Committee : Netherlands. (2001). Inter alia, about inability to regulate euthanasia, euthanasia for newborns and children.

Furthermore, Dutch regulations have gradually widened to include people who are mentally ill, have beginning dementia, are newborn babies with disabilities and extended a right to euthanasia from age 12. Now a large citizens initiative around a right to euthanasia when ‘tired of life’ from age 70, is pushing the boundaries even further.

See Jochemsen,H. (2007). Recent developments in the euthanasia debate in the Netherlands. ;Ms Els Borst, the Minister responsible for euthanasia supports a ‘tired of life’ rationale: Dutch Minister favours suicide pill

Jochemsen,H.; Keown,J. (1999). Voluntary euthanasia under control? Further empirical evidence from The Netherlands. Journal of Medical Ethics, 25,1, 16-21. This study concluded that voluntary euthanasia in the Netherlands remains beyond effective control.

Around 1,000 cases of nonvoluntary euthanasia, through not being competent to consent, were reported in the first two government reports on euthanasia in 1991 and 1995. The government’s third report made it clear that it was the patient’s responsibility to make an advance direction NOT to have euthanasia, in the event of suffering and being incompetent. See The Linacre Centre for Healthcare Ethics (2004). Submission to the House of Lords Select Committee on the Assisted Dying for the Terminally Ill Bill.

Buiting,H., van Delden,J., Onwuteaka-Philpsen,B., Rietjens,J., Rurup,M, van Tol,D., Gevers,J., van der Maas,P, & van der Heide,A. (2009). Reporting of euthanasia and physician-assisted suicide in the Netherlands: descriptive study. BMC Medical Ethics 2009, 10:18.

This 2009 study concluded that “The information [Dutch doctors performing euthanasia] provide is in most cases sufficient to enable adequate review.” It also reports:

63% physicians mentioned 'other aspects'; these included increased dependency (28%), deterioration (15%) and more rare aspects (16%), such as loneliness, being a burden to relatives and being mentally exhausted. Physicians most often based the 'hopelessness' of the suffering upon the "absence of treatment alternatives" (32%), "absence of curative treatment alternatives" (28%), or "absence of treatment alternatives to relieve the patient's symptoms", or combinations of these (14%).

10 Hendin,H; Foley, K. (2008). Physician-assisted suicide in Oregon: A medical perspective. Michigan Law Review, 106,8. This study found that legally mandated safeguards were being circumvented, causing harm to patients.

Eleven years of assisted suicide in Oregon. Patients Rights Council. A comprehensive analysis of implementation of Oregon’s Death With Dignity Act (1997), showing many flaws.

11 Cohen-Almagor,R. (2009). Law, ethics and medicine Belgian euthanasia law: a critical analysis. J Med Ethics 2009;35:436-439 Found concerns with the Belgian euthanasia law itself and about potential abuse.
Inghelbrecht, E, Bilsen,J., Mortier, F., Deliens, L.(2010). The role of nurses in physician-assisted deaths in Belgium. Canadian Medical association Journal, 182,9. This study highlight the role of nurses in administering life-ending drugs and warns of the nursing profession’s illegal practice in going beyond the boundaries of the profession, including through direct involvement in euthanasia without an explicit request from the patient, and in which close to half of all nurses in this study involving 1678 Belgium nurses.

Until death do us part... not. Presented as "taboo-breaking", Belgium couples are having euthanasia together. Reported on March 30, 2011, an 84-year old terminally ill man and his 78-year old non-terminally ill wife (she had arthritis), met all the Belgium euthanasia criteria and had euthanasia done together. The wife simply did not want to to on without her spouse. See video here. It was the first time that such joint euthanasia had been openly acknowledged in funeral notices but joint euthanasia by Belgium couples is reportedly not uncommon. Like Dutch provisions, three doctors had assessed the joint request and judged it as within the law, which, also like Dutch law, does not require terminal illness as a criterion.
12 The UK House of Lords Select Committee, which stated in 1993, in the context of the Bland case:

We do not think it is possible to set secure limits on voluntary euthanasia. It would be impossible to frame safeguards against non-voluntary euthanasia if voluntary euthanasia were to be legalised. It would be next to impossible to ensure that all acts of euthanasia were truly voluntary, and that any liberalisation of the law was not abused. Moreover, to create an exception to the general prohibition of intentional killing would inevitably open the way to its further erosion, whether by design, by inadvertence, or by the human tendency to test the limits of any regulation. These dangers are such that we believe that any decriminalisation of voluntary euthanasia would give rise to more and more grave problems than those it sought to address.

The Senate of Canada established a Special Committee to study the issues of euthanasia and assisted suicide and reached similar conclusions in 1994 on the same grounds and so did the New York State Task Force on Life and the Law.

13 For example the so-called “Parnell” Bill introduced in the South Australian Parliament in 2010, expressly allowed euthanasia for persons “suffering” from a disability. Leipoldt, 2010. Euthanasia in Australia: Raising a disability voice. Australian Policy Online.

Like wise the “Rights Of The Terminally Ill Act” (1998) had inadequate safeguards. (Keown, J. (2002). Euthanasia , ethics and public policy: An argument against legalization. Cambridge University Press.)

14 Magnussen (2002). Angels of death: Exploring the euthanasia underground. Yale University Press.

16 Kopp,S.W. (2009). The influence of death attitudes and knowledge of end of life options on attitudes towards physician-assisted suicide. Omega (Westport). 58(4)299-311.

Aranda.S, O,Connor.M (1995). Euthanasia, nursing and care of the dying: rethinking Kuhse and Singer. Australian nursing Journal,3,18-121.

Webster, J., & Kristjanson, L. (2002). But isn‘t it depressing: The vitality of palliative care. Journal of Palliative Care,18(1), 144-150.

17 Sherry, M. (2000.). Hate crimes against people with disabilities. School of social work. University of Queensland. Accessed Oct 25, 2010.

18 Shut Out: The Experience of People with Disabilities and their Families in Australia, 2010. National Disability Strategy Consultation Report prepared by the National People with Disabilities and Carer Council. FAHCSIA10307.0908.

19 Leipoldt, 2010. Euthanasia in Australia: Raising a disability voice. Australian Policy Online.

21 Hubbard,S.(2004). Disability studies and health care curriculum: The great divide. Journal of Allied Health, 33(3),184-8.

Byron,M., Cockshott,Z., Brownett,H.& Ramkalawan,T. (2005). What does ‘disability’ mean for medical students? An exploration of the words medical students associated with the term ‘disability.’ Medical education 39:176-183.

Dixon,D.P. (2008). Informed consent or institutionalized eugenics? How the medical
profession encourages Abortion of fetuses with Down Syndrome. Issues in Law &

22 Stevens, Jr, Kenneth, R. (2006). Emotional and Psychological Effects of Physician-Assisted Suicide and Euthanasia on Participating Physicians. Issues in Law & Medicine, 3, 187-200.p

23 Herman Daly is a professor of economics and past World Bank economist. John Cobb is a professor of philosophy and theology. As one strategy to reduce excess of births over deaths in answer to the overpopulation problem, they proposed a right to die for older people. Of course, the incidence of disability is high in old age, and like in disability, a sense of meaning in old age has been eroded. When meaning in the lives of vulnerable people is questioned, a perceived suffering from old age or disability, can lead to the concept of their lives as worthless and disposable. We should also ask, is a ‘right to die’ here a front for the greater good of society? They wrote:

Older people should have the right to die on their own terms. A major dread of the elderly is that they will be kept alive at great expense to society and with much trouble to their children long after their lives have ceased to have any meaning for themselves and for others. This is, on any large scale, a problem brought about by the triumphs of modern medicine. The proper response cannot be found in ancient religious texts that came out of a very different social and demographic situation. Society is beginning to take a few tentative steps toward releasing doctors from the need to take extreme measures in preserving the life of one who wants to die we hope that with due caution it will go considerably further. Quite apart from any general demographic considerations, a proper respect for human freedom and the needs of the elderly should grant them the right to die and aid them in implementing their decision. In a world where population presses upon ecological limits, there are additional reasons to take these humane steps. (p.250). Daly, H.E., Cobb, J,B. (1989). For the common good. Redirecting the economy toward community, the environment and a sustainable future. Beacon Press. Boston.

Another warning on a slippery slope from Pieter Admiraal, a former Dutch anesthetist, who became one of Holland's leading campaigners for euthanasia. He said:
In 50 years time, you will see euthanasia accepted all over the world. It will be used with patients suffering from Alzheimer's who are otherwise kept alive for five or ten years. The time will come when we say that this costs money, and if you are demented for one year, we will kill you. I see it not as the answer to the growing elderly population but as the exercise of the right of self-determination.
Reported in an excellent article by Ruth Limkin (2008). Living with Dignity. Eureka Street

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