This is a follow up post to the article yesterday about people living with disability, the prejudice they face and why this all points to euthanasia & assisted suicide being a dangerous, bad idea.This article was written by UK academic, sociologist and blogger, Angela Kennedy and is cross posted with permission.
Objections to euthanasia, assisted suicide or assisted dying are most frequently portrayed in the media as being motivated by religiosity, a right-wing, 'anti-choice' rhetoric. This often functions as a 'straw man' and ignores the reasons most often given by disabled people and their supporters for why these practices are dangerous to disabled people. Below is a short summary of the reasons why disabled people (and their supporters) in the UK, who may not be (indeed are often not) religious, 'right-wing' or 'anti-choice' in most areas of life at all, are objecting to legalisation of euthanasia, assisted suicide and assisted dying. This does not necessarily constitute an exhaustive list of the grave concerns people are giving as reasons for their objections. Nevertheless I have tried to make this list as comprehensive, but also as concise, as possible. The ten main reasons people object to euthanasia, assisted suicide and assisted dying are:
1. The 'Right to die' is always in danger of becoming 'duty to die', in neoliberal ideology in particular, for people with physical impairment who need help in activities of living (people who cannot commit suicide by themselves) and are treated, and encouraged to see themselves, as 'burdens'. This ideology reaches doctors, families and social services.
2. Related to this, current mistreatment of disabled people by the UK government has been leading to more suicides anyway. Treatment of disabled people as 'burdens on the state' is in place already as state policy. Suicide rate because of denial of welfare would be likely to accelerate even more with legalisation of 'right to die' for disabled people. Health care economic concerns, where the public has been exhorted to 'tread lightly on the state' (Emke, 2002) have also been promoted for many years. There is a real risk of exhortation of people with medical impairments to present themselves for killing should it be legalised.
3. It is always very hard to ascertain whether someone is choosing suicide rationally or because of (a) being under duress (b) depressed (due to medical impairment, or life circumstances), both of which could lead to irrational decisions to commit suicide, which may change once the duress, bad situations or even ill health causing specific bout of depression is eliminated. But these are unlikely to be presented as solutions to the person at risk of suicide due to disability or ill health.
4. With people who have any difficulty communicating - others may make the wrong decision for them to die, whether deliberately, or by mistake. Thus involuntary euthanasia' by the back door' is always a risk.
5. However discomfiting to acknowledge, the above all have precedents in the state policies of Nazi Germany, where disabled people were the first to be killed within peacetime state policy. Even the notion of choice (or 'right') to die was initially used in Nazi propaganda and quickly turned to 'duty' (though in some aspects ran concurrently - indicating supporting 'duty to die' was the hidden desire). Michael Burleigh's research, delineated in his book Death and Deliverance, demonstrates that this happened, and the ideology behind it is demonstrated in Hitler's Mein Kampf and elsewhere.
6. It is clear that the 'right to die' is only desired for disabled and ill. If it were different, physically fit people would be allowed to procure lethal drugs so that they didn't have to die by hanging, jumping off buildings or jumping in front of trains (for example), but die in a manner of their choosing (comfortably in their beds, for example). The suicide of a fit person is invariably seen as a tragedy, something to be prevented. This demonstrates that disabled and ill people are being specifically deemed as having lives not worth living. There is special pleading for their 'right to die'. If it is believed they have lives not worth living, then the 'logical' conclusion from that is that they are better off dead (whatever the disabled or ill person believes).
7. Changes of laws always engender the capacity to set a precedent. Abortion is an example of precedent. Now the law allows, in the UK, abortion effectively up to birth for disabled foetuses. The legalising of abortion in the first place, in 1967, allowed the new law to be made legalising a differential treatment of those with disability. So does Breed Specific Legislation. There was no BSL in the UK before 1991. Then a knee-jerk response brought in legislation banning certain dog breeds, but also, in the case of the 'pit bull' (genetically no such breed) any dog that is deemed, by very subjective measures, of 'pit bull type' is covered. This means even pedigree dogs can be deemed of type and therefore 'illegal' (including pedigree Staffordshire bull terriers). The law is highly unpopular, condemned by many experts and dog welfare organisations, and can be shown to be irrational. But not only do successive governments maintain it and refuse to repeal: a select committee on Dog Control and Welfare, despite being made aware of the myriad problems of BSL, have actually recommended that other breeds be added to the legislation as they see fit. The 1991 legislation set a precedent. These are just two examples of laws that engendered precedents allowing further changes to laws. The possibility of voluntary euthanasia/assisted suicide/dying leading to involuntary euthanasia is a reasonable concern, when historical precedents, and current state treatment of disabled and ill people indicate lack of respect for their autonomy in living, as is the case now in the UK. Belgian government members have recently voted to allow euthanasia for children “if the parents consent”, and there is evidence that people are killed under the Belgian state policy even when they do not ask to be so (Chambaere et al, 2010).
8. Often those advocating the 'right to die' invoke notions of 'choice', but are usually looking to give doctors power over life and death decisions, not individual members of the public the 'right' to die as they wish. This is a highly problematic intention. Doctors have no special knowledge of ethical problems, and have conflicts of interest, particularly as agents of the state presiding over health care economic decisions. Despite the cultural romanticizing of doctors' (and nurses') roles, they have no automatic special wisdom in understanding this issue and the ethical problems it generates. Despite the fervent support for the Liverpool Pathway by some, Rabbi Neuberger's report showed how easily health professionals failed patients in 'end of life' situations under it. Nor are state officials in any guaranteed privileged position to 'choose wisely' on this matter, governed, as they are, by neoliberal ideology informing health care economics and welfare provision.
Although I have specific criticisms of it, one of the most useful books I have read on this subject is Fabian Tassano's The Power of Life or Death: Medical Coercion and the Euthanasia Debate:
"In spite of much recent talk about autonomy and patient rights, there is mounting evidence that patients' views come a poor third in the determination of treatment after cost considerations and 'expert' opinion. This is particularly true for the elderly, the disabled and the handicapped. Yet medical practitioners are perceived as benevolent authority figures who always act in their patients' best interests. As a result, they have been given increasing discretion in deciding who is to live and who is to die. This book argues that patients need to recognise that medicine is not necessarily on their side. It is written for the general reader who is concerned with the question of involuntary treatment and non-treatment."
My main problem with Tassano's argument is that it neglects to address how such problems occur in private health care systems, focusing on 'socialised' systems instead. But the problems he outlines above are major concerns to be addressed publicly, though they have not been in this debate (at least publicly) very much at all.
9. That these problems are rarely, if ever, discussed in the public discourse on euthanasia/assisted suicide/dying (including where they have been subject to legalisation), and opponents of legalisation are subjected to ad hominem misrepresentation, usually centring on alleged 'religious beliefs' is odd. The lack of open discussion being afforded to all 'stakeholder' groups is itself suspect, indicating that 'full and frank discussions' are being censored, and that some people may have interests in doing this: therefore a more cautious appraisal of moves to legalise death-making decisions is indicated. Related to this is that research claiming positive results and lack of problems (such as involuntary euthanasia) in the academic literature is generally not critically appraised, but taken at face value. The critically analytical person should find this suspect. More analytical appraisal of those systems already in place are needed, and which need to be publicised, from an ethical, sociological and scientific perspective, before an open and accurate appraisal can be made of how these systems are proceeding, and their effects.
10. The problems outlined above all have the capacity to intersect with and compound each other, causing increased, multiple jeopardies, that is, discrimination and prejudice based on various forms of social stratification such as race, gender, class, sexuality, age and, in this case, for disabled and ill people, to the point of wrongful killing of them. For at least all of these reasons - it is clear that the UK are not in a position to be able to 'make safeguards' against the above abuses of any legalisation of euthanasia, assisted suicide, or 'assisted dying' as yet - and may never be. Therefore legalisation of any of these at this point in time would present fundamental dangers to the rights, and lives, of disabled and ill people in the UK.
Burleigh, M. Death and Deliverance (2002) London, Pan.
Chambaere, K. et al 'Physician-assisted deaths under the euthanasia law in Belgium: a population-based survey' CMAJ May 17, 2010.
Emke, I. (2002) ‘Patients in the New Economy: the "sick role" in a time of economic discipline’ Animus 7: 81-93.
Erstelt, S. 'Belgium: Senate Approves Measure Allowing Doctors to Euthanize Children' Life News 12 December 2013:
Neuberger, J. et al Independent Report: Review of Liverpool Care Pathway for dying patients (2013)
Hitler, A. Mein Kampf (2007) Jaico Press.
Tassano, F The Power of Life or Death: Medical Coercion and the Euthanasia Debate (1999) Oxford, Oxford Forum
17 December 2013