Memorandum by Dr Tom Shakespeare
AUTHOR
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. INTRODUCTION
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.
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. REASONS WHY
THE DISABILITY
RIGHTS MOVEMENT
MIGHT OPPOSE
ASSISTED SUICIDE
(AS)
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. IMPORTANCE
OF SOCIAL
CONTEXT
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. ARGUMENT FROM
AUTONOMY
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. CHOOSING DEATH
CAN BE
RATIONAL
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. PRAGMATIC
ARGUMENTS
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. SAFEGUARDS
IN AS
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. CONCLUSIONS
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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