|Disability Studies Quarterly
Summer 2004, Volume 24, No. 3
Copyright 2004 by the Society
for Disability Studies
A Disabled Person's Perspective on Euthanasia
The word "euthanasia" literally means "a good death" but in modern usage it has come to mean the intentional killing, by act or omission, of a person whose life is felt, by themselves or by others, to be not worth living.
Terminally ill and incurably disabled people are those most at risk of having their lives deemed "not worth living" whether or not they have actually asked to be killed. These are the people viewed by the pro-euthanasia lobby as being the beneficiaries of any law to allow euthanasia.
Those who promote the supposed "right to die" say that any euthanasia law should have "strict safeguards" to prevent "abuse of the law." These supposed "safeguards" in effect prescribe who is to be considered "right to want to die, thus qualifying for euthanasia. People with disabling or degenerative conditions, or with terminal illnesses fall into this category while others, who may be equally suicidal, but have no obvious illness or disability, are considered "wrong to want to die" and are helped to live. We even have suicide prevention strategies and teams to help those who are suicidal to survive.
The phrase "death with dignity" is very often used to mean the deliberately procured death of an ill or disabled person, and strongly implies that vulnerable people are "dignified" only in death. It is a phrase that is regularly used by the pro-euthanasia lobby to further their cause.
The situation of the UK's Diane Pretty in 2001-2002 is a case in point. Mrs. Pretty was terminally ill with motor neurone disease, and she argued that her husband should be legally allowed to "help her die" (i.e. kill her). She said that "rather than die by choking or suffocation" she wanted to "die with dignity" at a time of her own choosing. However, the assumption that she would choke or suffocate to death has no basis in truth (Phillips, 1995; O'Brien et al, 1992). She based her case on a "right to autonomy" – yet in her attempt to exercise autonomy, her own autonomy would be forever destroyed.
Mrs. Pretty argued that the UK Human Rights Act of 1998, which guarantees that "everyone's right to life shall be protected by law. No one shall be deprived of his life intentionally..." also included a "right to die with dignity" (High Court of Justice, 18 October 2001). However, Lord Justice Tuckey, in the House of Lords judgment stated
In our view the right to human dignity which is enshrined in Article Three (of the Human Rights Act) is not the right to die with dignity, but the right to live with as much dignity as can possibly be afforded until that life reaches its natural end (High Court of Justice, 18 October 2001).
This is necessarily so because the right to life is an inalienable right, meaning that it is a right of which I may not be deprived, and of which I may not even deprive myself.
Diane Pretty lost her case in a succession of Courts, and she died in May 2002 at the Pasque Hospice in Luton. The Head of Medical Services at the Hospice said "Diane died peacefully ... choking or suffocation was never an issue for her" (Edwards, 2002).
I know I am not the only disabled person who is terrified at the possibility that euthanasia might be legalized (Oliver & Fisher, 2002). I strongly believe that the supposed "right to die" is a subterfuge for what is really a "duty to die" because society prefers not to provide appropriate support to help us to live with dignity, but prefers the cheaper option of killing (Not Dead Yet, 2002).
Negative attitudes towards vulnerable people often affect the treatment we receive. Sue Maynard Campbell, Vice-Chair of a National Health Service (NHS) Trust, who uses a wheelchair, went into the hospital for a chest infection in 1998, and was horrified to find "Do Not Resuscitate" written on her notes (Sunday Mirror, 2000). The doctor had decided she had a "poor quality of life" after, she says, speaking "no more than six words" with her. She now refuses to go for treatment to a hospital. This is far from being an isolated case.
Many people who would recognize that this was wrong, nevertheless believe that euthanasia should be available for those in "unbearable pain," a claim made often by the pro euthanasia lobby. However their definition of "pain" is very wide. For instance, Sir Ludovic Kennedy, President of the Voluntary Euthanasia Society (VES), has said:
The patient must be beyond the help of treatment, and find his suffering, physical or mental, unbearable... Nor is it only pain ... which causes people to long for death, but the miserable side-effects which often accompany it – incontinence, vomiting, bedsores, breathlessness, edema, insomnia – leading to a gradual disintegration of the personality and death without dignity (Kennedy, 2001).
I experience regularly all the symptoms he cites apart from bedsores, and have done so for many years, so presumably my personality must be well disintegrated by now. Perhaps my friends are too polite to tell me!
Hospice doctors estimate that at least 95% of physical pain can be completely and easily relieved while much of the rest can be relieved by non -drug methods (Twycross, 1997). However, the vast majority of requests to be killed are not because of physical pain but as a result of severe depression, which can and should be treated, as it routinely is in non-disabled people.
Euthanasia is already going on in the UK, on a non-voluntary basis. Since the killing of Tony Bland, who was in a persistent non-responsive state (PNS), by starvation and dehydration in 1993, many other people in PNS have been killed in the same way. The British Medical Association (BMA) has admitted that "a practice has developed" of withdrawing food and fluids from people in PNS, and also those with advanced dementia or who have had severe strokes (1999).
The BMA ominously states that it "strongly opposes any changes in the law for the time being" and says that what it chooses to call "life-prolonging treatments" like food and water "in themselves cannot reverse a patient's disease" (BMA, 1999). If food and water could "reverse disease," surely no one at all would ever be ill!
Guidelines on withdrawing and withholding food and fluids from vulnerable people are now being challenged in the British High Court by Leslie Burke, a 42-year-old man, who has cerebella ataxia. He uses a wheelchair and is expected to remain mentally competent until his death is imminent, but he will lose the ability to swallow or speak, and will thus need assisted food and fluids at some time in the future. He argues that the GMC guidelines could breach his right to life and right to be spared inhuman and degrading treatment under the European Convention on Human Rights (Dyer, 2004). It can only be imagined how he and others like him would suffer while being starved and dehydrated to death.
The Government's "Mental Capacity Bill" goes further even than the GMC Guidelines. It suggests that people, while mentally competent, appoint a "Lasting Power of Attorney" (LPA) to make decisions for them should they become incapacitated. These LPA's could make legitimate decisions ensuring that appropriate health care was given, but they could also be given the power to decide that assisted food and water should be withdrawn from the incapacitated person.
The Bill stresses the importance of the "wishes and feelings," "autonomy" and "quality of life" of vulnerable people, rather than relying on the traditional concept of acting in the patient's "best interests." If autonomy and "wishes and feelings" were the only interests people have, there would apparently be no justification not to kill a seriously cognitively impaired person, because s/he would be unable to claim autonomy, or express any "wishes" or "feelings" (Doyal & Wilsher, 1994).
The Bill also makes the assumption that Advance Directives are already legally binding, which is by no means the case. Doctors are not, in fact, forced to act upon an Advance Directive, but do have the duty to act in the traditionally ascertained best interests of the patient. Legally binding Advance Directives are extremely dangerous, not least because it would be impossible to express a change of mind. Having such a binding directive could lead to non-treatment of a curable illness, for instance a urinary infection or even constipation, both of which can cause confusion in elderly people, and it could also mean that a doctor could be prosecuted for saving the life of someone who took an overdose, if that person had signed an Advance Directive.
The Voluntary Euthanasia Society has introduced its own "Pro-Choice Living Will," which it says can be used by everyone to either refuse treatment or request it (VES, 2003). The problem with this is that only decisions to refuse treatment are "currently decisive at common law" so while one can express a preference "it is not possible to demand particular types of treatment" (Winterton, 2003). In other words using an Advance Directive you can request death, but not life.
The Government, in response to fears that the Mental Capacity Bill would legalize covert euthanasia, claims to oppose "euthanasia" (Filkin, 2004), but defines "euthanasia" so narrowly - as "a deliberate intervention with the express aim of ending life" that the killing of people in PNS, and other vulnerable people, by withholding or withdrawing their food and water is excluded from the definition (Lord Chancellor to the Law Society, 1999).
In fact, the draft Bill may contravene both the UK Human Rights Act 1998 and the European Convention on Human Rights, both of which guarantee "everyone's right to life shall be protected by law. No one shall be deprived of life intentionally" (1998).
An additional threat to vulnerable people is a Bill presented in the British House of Lords by Lord Joel Joffe, which recently had its Second Reading, and is now in a Select Committee. This Bill, which originally applied to both terminally ill and disabled people, has now been amended to apply only to the terminally ill. As with all attempts to legalize euthanasia, it seeks to limit euthanasia to only some sorts of "volunteers" and suggests that death is in the "best interests" of those who qualify. It terrifies me, for reasons which I'll now explain.
I have suffered a lot of pain in the past and still do now. I need morphine regularly – and even that doesn't always alleviate the pain. In addition to spina bifida and using a wheelchair, I also have emphysema, a breathing problem that makes me susceptible to chest infections, and osteoporosis – brittle bones, which has caused my spine to collapse and trap nerves. When the pain is at its worst, I cannot move or speak. This can go on for hours, and is likely to get more frequent rather than less so, over time.
About 18 years ago, mental pain, due to several factors, compounded the physical pain to the extent that I no longer wanted to live. Several doctors agreed that my life expectancy was very short. Over time, my wish to die became settled and lasted about 10 years. During the first five of those years I seriously attempted suicide several times.
On one occasion, which particularly sticks in my mind, I had taken a large overdose of painkillers and cut my wrists badly with a penknife. I then drank a whole bottle of Martini, lay down in bed, cuddled my favorite teddy bear and waited to die. Fortunately for me (at the time I thought most unfortunately) a friend arrived shortly afterwards.
My door was never locked at that time and my friend let herself in, found I was losing consciousness and called emergency services. I was taken to the hospital and treated against my will. I refused stomach pumping and treatment for my wrists, and remember thinking how stupid it was that the doctors asked for my consent, saying "otherwise you will die" when that had been my specific intention. They waited until I lost consciousness, then treated me anyway. If euthanasia had been legal then I would have requested it with no hesitation at all, and had Advance Directives been available I would have written one.
When I have told my story in public, representatives of the Voluntary Euthanasia Society have always protested that under their proposed rules my request for euthanasia would have been denied because they claim I was "depressed." Apart from the breathtaking arrogance of presuming to know my state of mind at a time when they did not even know I existed, the truth is that the supposedly "strict safeguards" to a euthanasia law that the VES promotes, do not even mention depression as a disqualifying factor. In fact, most requests for killing do stem from some form of depression, and the availability of euthanasia would simply mean that less attention would be paid to trying to treat it.
If euthanasia had been legal then, I would have been killed, and thus denied the chance to rediscover my human value – a value that is not compromised by the fact that even now I have severe pain, which is not well controlled, the same incurable disability, and sometimes feel very low.
The turning point for me was a trip to India in 1995, where I met a group of disabled children who were to change my life forever. As I played with them, they started to call me "Mummy" and I suddenly loved them all overwhelmingly and fiercely, as if they really were mine. When we left them, I said to Colin, my full-time assistant, "I think I want to live." It was the first time I had thought that for more than 10 years. That visit led to Colin and I setting up a charity, Enable (Working in India), to support the children, and now I am proud mother of 347 with more on the way!
Euthanasia would have robbed me of the last 18 years of my life, and it would have robbed "my" Indian children of a future beyond begging. And no one would ever have known that my future held something good both for me and for children in India who were then not even born.
Despite protestations of "merciful" motives, arguments in favor of euthanasia are really based on a deadly mix of emotion, economics (killing is cheaper than caring), and a negative view of the value of vulnerable people.
True compassion lies in reminding those who suffer that their suffering does not alter their infinite human value. Sham love lies in telling the suffering person , "Yes, you are right to feel so hopeless - you do have no value" and colludes in the fallacy that there is such a thing as a life not worthy to be lived.
To accept requests for "voluntary" euthanasia is to accept that disability or illness is a fate worse than death. "My" Indian children saved my life not despite their own suffering but because of it. To argue that suffering people have worthless lives is to turn our backs on the greatest learning adventure life has to offer. I have come to realize that it is only through helping suffering people to realize their true, inherent dignity and value that we can really enable vulnerable people to live with dignity until they die naturally.
British Medical Association. (1999). Guidelines on Withholding or Withdrawing Life-prolonging Medical Treatment.
Dyer, C. (2004, March 6). Patient challenges GMC guidance on withdrawing treatment, British Medical Journal, 328:541.
Doyal, L. & Wilsher, D. (1994, June 25). Withholding and withdrawing life sustaining treatment from elderly people; towards formal guideline. British Medical Journal, 308:1689-1692.
Edwards, L. (2002, May 15). The last days of Diane Pretty, The Herald & Post.
Lord Filkin. (2003, February 3). [Letter from Parliamentary Under Secretary of State to John Smith, MP].
High Court of Justice. (2001, October 18). Queen's Bench Division Administrative Court between The Queen (on the application of Diane Pretty) and Director of Public Prosecutions (Defendant) Secretary of State for the Home Department (Interested Party), (1) Medical Ethics Alliance (2) Society for the Protection of Unborn Children (3) Alert (Intervenors).
Kennedy, L. (2001, May 19). Why, after 45 years, I can no longer support the Liberal Democrats, The Times.
Lord Chancellor. (1999, November 10). Speech to Law Society Conference on Mental Incapacity.
Not Dead Yet. (2002, March 22). U.S. Disability Group Reacts to UK Court Ruling in Assisted Suicide Case. [Press Release].
O'Brien, T., Kelly, M. & Saunders, C. (1992). Motor neurone disease: a hospice perspective. The Lancet, 304: 471-473.
Oliver, D. & Fisher, J. (2002). Assisted suicide is not always as easy as suggested. British Medical Journal, 324:846.
Phillips. M. (1995, March 19). The will is not to die but to flee, The Observer.
Sunday Mirror. (2000, April 30). How dare anyone tell me I am not worth saving.
Twycross, R. (1997, July). Commentary. Macmillian Clinical Reader, Oxford University.
UK Human Rights Act. (1998). Schedule 1, Part 1, Article 2, Clause 1.
Voluntary Euthanasia Society. (2003, November 3). Pro choice Living Will launched following Tom Hurndall tragedy, [Press Release].
Winterton, R. (2003, August 17). [Letter from MP, Minister of State, Department of Health to Michael Portillo, MP].
Disability Studies Quarterly (DSQ) is the journal of the Society for Disability Studies (SDS). It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities and arts, disability rights advocates, and others concerned with the issues of people with disabilities. It represents the full range of methods, epistemologies, perspectives, and content that the field of disability studies embraces. DSQ is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society. (ISSN: 1041-5718; eISSN: 2159-8371)