A Disability Perspective On Euthanasia: Pro-Living
A Disability Perspective On Euthanasia: Pro-Living
Contact: [email protected]
• 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.
• 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).
• 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 and 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 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…
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).
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)
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, and 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. (...) [O]nly 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 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.
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:
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.
See Joan Hume's (1996) Disability, Feminism and Eugenics: Who has the right to
decide who should or should not inhabit the world?
5
See inter alia UNCDPR article 10, “Right to life”:
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.
7
Position Statement on Euthanasia and Physician-assisted Suicide. Palliative Care
Australia , accessed February 2011.
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.
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.
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.
http://www.deredactie.be/cm/vrtnieuws.english/mediatheek_en/1.990035
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.
12
The UK House of Lords Select Committee, which stated in 1993, in the context of the
Bland case:
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.
15
Sobsey,R. (1994). An Illusion of Autonomy: Questioning Physician-Assisted Suicide
and Euthanasia
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.
20
Fitzgerald,J. (1999).Values in End-of-Life Decision-Making: Some Implications for
People with Disability. Accessed 05 Nov 2010.
21
Hubbard,S.(2004). Disability studies and health care curriculum: The great divide.
Journal of Allied Health, 33(3),184-8.
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.
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