In this paper I want to address what I view as some of the key issues in the debate around the notion of ‘assisted suicide’. It has to be stated that I am not neutral on this subject and that my opinions have been informed by my experiences as a disabled campaigner, historian and sociologist. Too often disabled people have been told by nondisabled professionals that any views we might hold regarding our own experiences are bound to be ‘subjective’, thus implying that our views aren’t valid. Indeed, I would argue that for the majority of my life, I’ve seen disabled people like myself encouraged to believe that there are armies of nondisabled experts and professionals out there who ‘know what is in our best interest’ and as a consequence we find ourselves subjected to ideas and practices we have neither influenced nor control over.
It is therefore perhaps ironic that those who have used their oppressive powers to control our lives are now, at this precise moment in time, choosing to grant certain groups the legal ability to end their lives with assistance. To add insult to the irony, there remains the absurd argument that the debate around the notion of ‘assisted suicide’ has nothing to do with disabled people; that the issues concern only those who are regarded to be ‘terminally ill’. If this were true, why are there disabled people voicing opinions on both sides of the debate? If this was true, why would history call into question the validity of such a claim? And finally, if this is true, why is it that will be healthy, nondisabled people who will decide whether or not assisted suicide will be legalized in Britain?
Throughout the history of euthanasia issues relating to significant illness, impairment and the experience of disability have been brought into play. Disability history remains largely unrecorded, denied and suppressed in mainstream accounts of medical practice, social policy and social history. My starting point however is to acknowledge the fact that there is a difference between euthanasia and assisted suicide by offering two distinct definitions.
Euthanasia in this paper refers to “… intentionally, knowingly and directly acting to cause the death of another person (e.g., giving a lethal injection).” Assisted suicide will be defined as “… intentionally, knowingly and directly providing the means of death to another person so that the person can use that means to commit suicide (e.g., providing a prescription for a lethal dose of drugs).” By employing this definition I am asserting that ‘assisted suicide’ and ‘assisted dying’ in the context of proposed new legislation are one and the same.
The framework for ‘the foot in the door’ approach
In order to address the current debate in Britain around assisted suicide I believe it is necessary to provide some historical context. Historian, Ian Dowbiggin, PhD explains in A Merciful End: The Euthanasia Movement in Modern America, (2003):
When the 1940s dawned, many in the euthanasia movement believed it was only a matter of time before euthanasia became legal in the United States…
But euthanasia advocates were in for a surprise… World War II broke out, and as Hitler’s war machine Marched eastward across Europe…news of Nazi atrocities against mental patients and handicapped children filtered back to America… As word spread in the late 1940s, the euthanasia movement found itself increasingly on the defensive, scrambling to deny that the form of euthanasia it supported was the same as Nazi murder.
Attitudes towards euthanasia and assisted suicide have shifted once more across Europe and the North Americas with bills to legalize assisted suicide being considered in various states and countries including, but not limited to, Canada, Britain, California, Hawaii, Vermont, and Washington during the first part of the 21st century. Park and Clery (2008) in their report, ‘Assisted dying and decision making at the end of life’, which looks at a piece of research conducted as part of the 2005 British Social Attitudes survey, reveal the findings as showing:
- [The] acceptability of assisted dying varies substantially, depending on the nature of the person’s illness, the type of assistance provided and who would be involved in the process.
Around four-fifths of people (80%) think the law should allow voluntary euthanasia carried out by a doctor for a patient who has a painful, incurable and terminal illness like cancer. However, it was found that when the illness is incurable and painful but not terminal, less than half support it (45%). (Park and Clery, 2008:2)
- The attitudes of the public to assisted dying have remained remarkably similar over time.
The researchers in 2005 repeated four questions first asked in 1995, and found only one showed a significant change. This was in relation to voluntary euthanasia carried out by a relative, where support had risen from 31% to 44 %. (Park and Clery, 2008:)
Park and Clery also noted that:
The report of the House of Lords Select Committee on the Assisted Dying for the Terminally Ill Bill, 2005, argued that there was ‘very little public understanding of the issues involved’. The issue was discussed at a … NatCen seminar about this research attended by policy-makers, researchers and practitioners. There was genuine disagreement about the extent to which the views of the public should be taken into account in considering future legislation. (Park and Clery, 2008:3)
What, if anything, can be drawn from these observations? I share the premise put forward by Marker that if the practice of involuntary euthanasia is viewed as one extreme and opposition to it as the other extreme, then it is possible to construct an argument that says assisted suicide for terminally ill competent adults which appears to be in the “moderate middle”. What this achieves is that it places this argument in a very advantageous political position, not only by providing a base-line for possible expansion of the practice to others, but also by enabling the prospect of sanctioning legalized assisted suicide to enter the realm of respectable debate.
Currently, euthanasia is a medical treatment in the Netherlands and Belgium. Assisted suicide is a medical treatment in the Netherlands, Belgium and Oregon. Their advocates erroneously portray both practices as being personal, private acts. However, legalization is not about the private and the personal. It is about public policy, and it affects ethics, medicine, law, families and wider social relations.
The two pillars that advocates of assisted suicide build their case on – individual autonomy and the elimination of suffering
Individual autonomy, meaning independence and the right of self-determination, is certainly valued in modern society and patients do, and should, have the right to accept or reject medical treatment. However, those who are in favour of legalizing assisted suicide claim that autonomy should extend to the right of a patient to decide when, where how and why they want to die. In the UK this is currently couched in terms of specific patients who are said to be ‘terminally ill’ and with only six months to live despite evidence to show that it is extremely difficult to define people in this narrow manner with many living long after their expected deaths.
The rationale is that when, where, why and how one dies should be a matter of self-determination, a matter of independent choice, and a matter of personal autonomy. It is necessary to ask to what extent this rationale can be taken at face value. Before exploring this further, let us consider the other issue: the elimination of suffering.
The second pillar of assisted-suicide advocacy is elimination of suffering. Marker points out that during each and every attempt to permit euthanasia and assisted suicide, its advocates stress that ending suffering justifies legalization of the practices. One example she gives is that of Lord Joffe who said that his bill would enable those who are “suffering unbearably” to get medical assistance to die. (Dyer, 2005) It was also noted that within testimony presented before the British House of Lords Select Committee studying Joffe’s bill, that where “assisted dying” has been legalized, it has done so “as a response to patients who were suffering.” (Finlay et al, 2005)
Here then is the second reason put forward to justify legislation, namely, it would serve to “eliminate suffering”. At this stage I’ll leave to one side what is actually meant by “suffering” because I wish to focus on what Marker views as contradictions within the rationale on offer. She states:
“…the rationale given by euthanasia and assisted-suicide proponents for legalization always includes autonomy and/or elimination of suffering. However, the laws they propose actually contradict this rationale.”
If we were to accept the belief that assisted suicide is a good medical treatment that should be permitted on the basis of personal autonomy or elimination of suffering, then, according to Marker, there is a need to ask additional questions in relation to the proposed legislation.
Does one’s autonomy depend upon a doctor’s diagnosis (or misdiagnosis) of a terminal illness? If a person is not terminally ill, but is suffering – whether physically, psychologically or emotionally – why isn’t it up to that person to decide when, why and how to die? Does a person only have autonomy if he or she has a particular condition or illness? Is autonomy a basis for the law?
What is being seriously questioned here is the fact the notion of autonomy is predetermined by external factors which actually undermine the very principle of individual autonomy. If it is good medicine, then why do the proposals only apply to adults capable of decision making and self-administration?
But many people will not be covered by the proposed legislation. As a result I believe Marker is right to assert that by setting arbitrary requirements that must be met prior to qualifying for the medical treatment of assisted suicide does, without doubt, contradict the two pillars on which justification for the practice is based. So why does this contraction exist? Again, I concur with Marker’s view that:
“After a series of defeats, euthanasia and assisted-suicide proponents learned that they had to propose laws that appeared palatable.”
Some may argue this is merely introducing the ‘slippery slope’ objection via a back door, but let us not forget what Lord Joffe, the British bill’s sponsor, said in 2005 when he acknowledged that his bill was intended to be only the first step. During hearings regarding the measure, he said that “this is the first stage” and went on to explain that “one should go forward in incremental stages. I believe that this bill should initially be limited….”
The question of individual autonomy links with the idea of self-determination.The values of dignity, autonomy, equality and inclusion are key EU principles. With the UN’s most recent human rights treaty, the Convention on the Rights of Disabled People, the core concepts of self-determination, participation and inclusion have been expressly linked to disabled people, namely “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”. The issue of self-determination therefore has to be addressed within the framework of understanding and seeking to respond to the negative interaction between the person and their social environment.
One argument put forward by disabled advocates of assisted suicide is the premise that: ‘… if people who have full functioning bodies can end their own lives, why shouldn’t people who lack this functional ability have help to do it?’ Currently, the proposals would not extend much beyond this point in any case, but I am happy to explore this question further.
My immediate response is to ask, have I missed something; have we suddenly resolved all the problems created by disabling barriers? Are there ‘reasonable adjustments’ in place for everything other than killing one’s self? I also feel it necessary to question what is so ‘special’ about this action – taking one’s own life – that places it above millions of other functional acts? Again, what is it that makes this ‘reality of impairment’ – the inability to kill one’s self – so unique? Apparently, we are told, this is a “special” case because people should not be forced to endure ‘pain and suffering’ or forced to live lives that are lacking in quality or dignity. Forgive me for asking, but exactly who is it that is deciding where to draw the boundaries around what constitutes ‘pain and suffering’ or lives that lack quality or dignity? There have been people who have ‘elected to die’ simply because they were being denied access to opportunities which would have improved their quality of life.
What this suggests is that the question as to why people ‘elect to die’ cannot be addressed purely within the context of medical intervention; there are social, economic and political considerations to be made. Within the current climate of austerity there are numerous pressures being exerted on various social groups. An example is the utilitarian argument which asserts that:
Today in many countries there is a shortage of hospital space. Medical personnel and hospital beds could be used for people whose lives could be saved rather than continuing the lives of those who want to die, thus increasing the general quality of care and shortening hospital waiting lists. It is a burden to keep people alive past the point they can contribute to society, especially if the resources used could be spent on a curable ailment.
From this perspective it is possible to see scenarios where consent could be given under pressure. Given the economic grounds for voluntary euthanasia, critics of voluntary euthanasia are concerned that patients may experience psychological pressure to consent to voluntary euthanasia rather than be a financial burden on their families.
Even where health costs are mostly covered by public money, as in various European countries, voluntary euthanasia critics are concerned that hospital personnel would have an economic incentive to advise or pressure people toward euthanasia consent.
Presently, Britain is not debating the merits or otherwise of voluntary euthanasia, however, the assisted dying narrative is couched in terms of ‘assisted dying’ which leaves the door open to the incremental approach Lord Joffe spoke about. Only the other day a disabled woman wrote on Facebook, “I personally don’t support assisted suicide, but on the other hand I don’t want to become a burden on my family.”
In the shadow of euthanasia and eugenics?
Whilst the issue of euthanasia is not part of current debate, many disabled people believe it is not possible to ignore the rationale that is shared by supporters of assisted dying and euthanasia – the relief of suffering? One interpretation of the law on euthanasia in relation to “intractable suffering” states: “It deals specifically with the situation where someone is in great pain due to an illness or a disease”. Here ‘great pain’ is highlighted, but is this a shared understanding? Many opponents of euthanasia refer to the historical events surrounding the “Euthanasia Programme” run by the Nazis codenamed Action T4. This programme resulted in at least 200,000 people with a variety of impairments being killed by medication, starvation, or in the gas chambers between 1939 and 1945. It should be remembered that the public were told the programme granted “mercy deaths” to incurable patients; however in practice it was used to exterminate “lives unworthy of life” as part of their “racial hygiene” concept.
The Nazis based their attitudes towards disabled people on the need for racial purity, attitudes which shared common ground with ideas found within the eugenics movement in Britain around the turn of the twentieth century. It is important however to understand how and why these ideas developed in both countries. To illustrate my point I want to consider an alternative take on the Action T4 programme. There is a body of opinion that has a problem with applying the term “euthanasia” to this programme because in their opinion, ‘euthanasia implies that the death is for the person’s direct benefit.’ Thus they argue what the Nazis did was to kill people without any consideration of benefit to the person killed and therefore it was straight forward murder. It is possible to question this interpretation because, given the dominant approach towards disability within many Western societies, ‘to have an existence rather than a life’, is often the way in which disabled people’s lives are viewed and often this alone could become the rationale for viewing euthanasia and/or assisted suicide as ‘benefiting the person’.
Why is this of importance to us? Katherine Brennan reminds us that:
British physician, Dr A.F. Tredgold, an expert adviser to the Royal Commission, delivered an influential lecture in 1910 called ‘The Feeble-Minded-A Social Danger’. Speaking of ‘idiots’ he said: ‘These are…incapable of being employed…their care and support absorbs a large amount of the time, energy, and money of the normal population… are utterly helpless, repulsive in appearance, and revolting in manners… In my opinion it would be an economical and humane procedure were their existence to be painlessly terminated. It is doubtful if public opinion is yet ripe for this to be done compulsorily, but I am of the opinion that the time has come when euthanasia should be permitted at the request of a parent or guardian.’( Tredgold’ The Feeble-Minded- A Social Danger,Eugenics Review (1909-10, 97-104)
Of course, that was over a hundred years ago, but have attitudes of this kind really disappeared? In July 2015, self-publicist and writer, Katie Hopkins spoke about the need for ‘euthanasia vans’ to take care of the burdensome elderly. Given the shrinking of the welfare state and rise in disability hate crime, I believe we are entitled as disabled people to view the assisted suicide debate in a wider context; to signpost towards the shadow of euthanasia and eugenics which has hung over disabled people for the majority of the last century and into this one.
I have explored what I consider to be some key issues in the assisted suicide debate because I wanted to demonstrate why there are aspects of this debate which are not getting the attention they merit. I also believe by going beyond accepting at face value of the central justifications for legislation, it is possible to argue that double standards are being applied. The full implications of adopting legislation to legalise assisted suicide are rarely explored; I would argue that one of the reasons this fails to materialise is because it would call into question many of the dominant ideological constructions around illness, impairment and social worth. As a leading disabled activist, I have spoken out over four decades on how disabled people have been systematically excluded from and marginalised within mainstream social relations, it therefore comes as no surprise to have those who maintain our social oppression tell us we have no part to play in this debate, we are scaremongering when we speak of how history can repeat itself. Disabled people did not raise the slogan, “Nothing About Us, Without Us!” without good reason.
Individual autonomy, self-determination and choice and control are important issues, too important to permit pro-assisted suicide advocates to pre-determine the context in which they are discussed.
Bob Williams-Findlay, MA
This article is indebted to a report written by Rita L. Marker
Park and Clery (2008) ‘Assisted dying and decision making at the end of life’, http://www.natcen.ac.uk/media/3046/assisted-dying-and-decision-making.pdf
Clare Dyer, “Lords back bill to legalise assisted suicide,” British Medical Journal, vol. 331 (Nov. 19, 2005), p. 1160.
I.G. Finlay, V.J. Wheatley, C. Izdebski, “The House of Lords Select Committee on the Assisted Dying for the Terminally Ill Bill: implications for specialist palliative care,” Palliative Medicine, vol. 19 (Sept. 2005), p. 445.
Kathrine Brannan (2015) Disability and Eugenics – Has Socialism anything to say?