Select Committee on Assisted Dying for the Terminally Ill Bill Minutes of Evidence

Memorandum by Dr Tom Shakespeare


  Dr Tom Shakespeare is a sociologist at the University of Newcastle. He has written widely within disability studies, including on a number of bioethical debates: books include The Sexual Politics of Disability, Exploring Disability, Genetic Politics: from Eugenics to Genome. He was a member of the Nuffield Council on Bioethics Working Party on the ethics of research on genes and behaviour. He has the genetic condition achondroplasia, which is a static, non life-threatening condition. He has been active in the disability rights movement for 20 years. In 2003, he was awarded the RADAR People of the Year award for furthering the human rights of disabled people in the UK.


  1.1  The disability rights movement has expressed considerable concern about end of life issues, fearing that vulnerable disabled people will be killed against their will, or left to die without assistance.

  1.2  The disability rights movement has not always drawn clear distinctions between different issues at the end of life:

    —  Do Not Attempt Resuscitation.

    —  Withdrawal of treatment.

    —  Assisted suicide.

    —  Voluntary euthanasia.

  1.3  It is necessary to distinguish situations where the autonomy of disabled people is undermined (abuse of DNAR, non-voluntary euthanasia) from situations where disabled people themselves are exercising their autonomy by requesting assistance with death, or withdrawal of treatment (advance directives, assisted suicide).

  1.4  In general, the disability rights movement have supported the autonomy of disabled people throughout life: the basis of independent living philosophy is support for the rights and choices of disabled people to have control over their own lives. It seems to me to be inconsistent to support autonomy for disabled people in all matters except at the end of life.


  2.1  The disability rights movement is anxious about pressure being exerted on disabled people to end their lives against their will, and is anxious about a slippery slope to non-voluntary euthanasia. There are historical and contemporary precedents for so-called "mercy killing".

  2.2  There are fears that disabled people will be pressured to request AS, although evidence from Oregon and the Netherlands is inconclusive.

  2.3  Many disabled people live throughout their lives with conditions which are defined as terminal. It is feared that it will be easy to extend the rights or cultural expectation of assisted suicide to disabled people in general, not just people who are in the terminal stage of a terminal illness.

  2.4  Many disabled people are living with the pain and dependency, technological and physical, which is cited as evidence for the rationality of a decision by others to seek assisted suicide. They fear that their own lives will be devalued, or may even be at risk, as a result of the decisions or attitudes of others.

  2.5  Many disabled people feel vulnerable and depressed. Many disabled people have at different points wanted to end their lives. With support and over time, most disabled people have come to terms with their impairments and learned to accommodate to their restrictions, reporting a good quality of life and no longer wishing to end their own lives. They fear other disabled people making irreversible decisions and denying themselves the possibility of living a better life as a disabled person.

  2.6  There is a fear that making AS available will send a message that it is logical and desirable for disabled people to end their own lives. This will influence the attitudes of people who live and work with disabled people. These messages and attitudes in turn will feed back into disabled people's own views about their actions and choices, making it more likely that they will choose AS.

  2.7  The disability rights movement has developed a social model understanding of disability, in which people are disabled by society, not by their bodies. This has made it harder for the disability rights community to engage with debates about illness, impairment and end of life. It could be argued that a social model philosophy enables some to disengage from troubling questions about bodies and mortality.


  3.1  People make decisions in a social context. If independent living options (housing, technology, assistance etc) are not available, then the lives of people with impairments and terminal illnesses will seem harder and they may be more likely to opt to end their lives. A person must have had access to the full range of care and independent living possibilities, prior to being entitled to request AS.

  3.2  Similarly, fear of the process of dying is widespread. It is argued that palliative care and pain relief can ease dying. The availability of palliative care and of hospice care is very important. A person must have had access to these facilities, prior to being entitled to request AS.

  3.3  Campaigns for assisted suicide and voluntary euthanasia have sometimes emphasised the pain, humiliation, and difficulty of disability in ways which are derogatory to disabled people, and cause fear and alarm in non-disabled people. Care should be taken not to express negativity about impairment and illness unnecessarily.

  3.4  Fear of disability is widespread among non-disabled people who are unfamiliar with disabled people. Research has shown considerable cultural prejudice against disabled people and a commonly expressed belief that it would be better to be dead than disabled. This fears need to be challenged, and the positive aspects and contributions of disabled people need to be emphasised. Impairment and disability are part of the human condition, and society needs to come to terms with disability, not encourage people to think that disabled lives are not worth living.


  4.1  The disability rights movement supports disabled people's choices in every other area of life. Where people cannot carry out physical tasks, the principles of independent living suggests that they should be able to employ others to carry out those tasks, under the control of the disabled person themselves.

  4.2  Non-disabled people in an end of life situation are often capable of committing suicide. Disabled people with the same desire may be incapable of implementing that choice (for example the case of Dianne Pretty). If applied consistently, independent living principles might suggest that disabled people should be empowered to have assistance to end their own lives in certain situations.

  4.3  It could be said to be inconsistent to limit the right of disabled people to assistance to commit suicide solely to cases of terminal illness. Why should disabled people not be able to choose suicide, just as non-disabled people can? Yet, there is a general presumption that suicide is to be prevented where possible. Even though suicide has been decriminalised, it is a moral duty for third parties to try to dissuade a person to commit suicide. Therefore it would not be right for society to help a disabled person to commit suicide on autonomy grounds. The only social sanctioned case where suicide becomes a legitimate choice is in the case of end stage terminal illness.

  4.4  In practice, disabled people themselves have often requested the right to assisted suicide, to withdrawal of treatment or other ways of ending life. When the Disability Rights Commission conducted an online survey in 2003, 63 per cent supported new laws on end of life.

  4.5  Different disabled people have different views and desires. The desires or decisions of one disabled person should not have direct implications for the desires or decisions of another disabled person.

  4.6  Disability rights activists concerns about AS highlight the importance of protecting individual choice. It is feared that some people's choices will be denied, but the anti-AS position itself is a denial of choice.

  4.7  The question becomes an empirical one: does the risk to the many of permitting AS outweigh the benefit to the few who may choose to use AS.


  5.1  Some people cope well with restrictions, find value in enduring suffering, find alternative sources of meaning and pleasure. Others find this situation unendurable.

  5.2  Even with palliative care, hospice facilities, support etc, some deaths are difficult and it is rational to fear them.

  5.3  Views on end of life are personal and subjective. One person's judgement does not have implications for another person's right to life or dignity or respect


  6.1  In the absence of legal AS, terminally ill people will still attempt AS. This can lead to the complications, distress and difficulty of "death tourism", for example in the case of Reginald Crew and others.

  6.2  Alternatively, "underground AS" may lead to the dangers of botched suicide, and the risks of prosecution of assisters, fears of which may make a terminally ill person's situation more difficult and anxious.

  6.3  Many people who desire AS may never take advantage of it. Knowing that AS is available may reduce the anxiety of dying people. Fears of pain and other symptoms may be mitigated by the knowledge that there is another way out, if it all gets too much.


  7.1  Given points made earlier (2.5, 2.6, 3.4) about fears of disability and the possibility of coming to terms with impairment and illness, people who have recently developed or been diagnosed with impairment/illness should not be allowed to exercise the choice of AS.

  7.2  The distinction between "people with terminal illness" and "terminally ill people" is very important, and not easy to define. AS should be available to people in the end stage of incurable disease, not to disabled people in general. Questions of definition need close attention in developing an AS policy.

  7.3  Depression and other mental illness may cloud judgement and may prevent a person with terminal illness making a competent decision to request AS. The right to request AS should depend on the mental competence of the person with terminal illness.

  7.4  Any request for AS should be subject to calm and careful scrutiny from both medical and legal professionals. Where possible, there should be a "cooling-off period" for the person to consider their situation, at the end of which they should have to confirm once more that they understand the consequences of their decision and want to go ahead with AS. This cooling off period might be set at 24 hours, except where death is imminent within that time.


  8.1  Disability rights-based objections to disabled people's exercise of autonomy at the end of life are procedural, not substantial.

  8.2  With suitable safeguards and regulation, assisted suicide legislation should be supported by those who support choices and rights for disabled people.

  8.3  Well informed, well supported, competent adults in end stage terminal illness should be able to exercise the choice of assisted suicide.

  8.4  If legalisation does proceed, the situation should be monitored very carefully. Empirical evidence is needed of AS in practice, and the law should be revised if evidence of abuse is presented.

  8.5  It is important for the views of disabled people to be heard in debates on end of life issues. But disabled people express a plurality of opinion on this, as on other matters. There is not unified opposition to AS from disabled people, or their organisations.

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