Assisted dying: what’s disability got to do with it?
BMJ 2009; 339 doi: https://doi.org/10.1136/bmj.b3446 (Published 26 August 2009) Cite this as: BMJ 2009;339:b3446
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Since all of the high-profile cases in the present campaign to change
the law on assisted suicide/euthanasia have focussed on disabled people,
it is a bit strange to start asking what it has to do with disability.
Perhaps if the proposed changes to the law enshrined the option of getting
help when we need it, disabled people like me might feel less threatened.
I seem to remember that Leslie Burke, who fought a legal battle to
continue to receive nourishment should he be unable to ask for it at some
time in the future, had his case thrown out - the Department of Health
argued that to guarantee tube feeding for all would be too expensive. The
Patients' Association has just published a report detailing the most
horrific neglect of the elderly and vulnerable in our hospitals. In the
1930s the newly-formed Voluntary Euthanasia Legalisation Campaign wanted
euthanasia for children, for insentient adults, for handicapped newborns.
Assisted suicide IS euthanasia - it has not been illegal to commit suicide
since 1961, and if disabled people wanted to commit suicide we would have
taken advantage of this 'choice' - but we haven't. If this debate is about
choice, it is the choice made by people in good health to give someone
permission to kill them at some unknown future date if they should become
disabled. It will give people the choice NOT to become disabled by
allowing them to be killed by prior appointment. Assisted suicide has
everything to do with disability.
Competing interests:
None declared
Competing interests: No competing interests
Tony Delamothe, who thinks the assisted suicide debate has been
"hijacked" by disabled people, is guilty of sloppy thinking, at best. He
states at the outset that he is "in favour of [assisted dying, assisted
suicide, assisted killing] for terminally ill adults of sound mind who
want to die. He then goes on to express his support for the death wishes
of Daniel James, a quadriplegic who was not terminally ill,and who died at
"Dignitas" and for Debbie Purdy, who has MS, really wants to die in
Britain and not in Switzerland, as her case suggested, and is also not
terminally ill.
Ms Purdy has actually admitted that she is now determined to campaign
for "suicide assisted by a doctor to be made legal in Britain for the
terminally, chronically or incurably ill." (Sunday Express 2 August 2009
p.46)
My own case is relevant here. I have spina bifida, hydrocephalus,
emphysema, lordosis/kyphoscoliosis, osteoporosis and osteoarthritis. I use
a wheelchair full time. Twenty years ago,when doctors thought my life
expectancy was very short, I decided I wanted to die. It was a settled
wish and lasted about 10 years. During the first five of those years I
attempted suicide seriously several times.
I was saved then because doctors rightly gave me life saving
treatment against my will. I was very angry with them then. Now I'm very
grateful. Had Tony Delamothe's favoured vision been law then I would have
requested death, and could not have been treated. I would have died, and
would thus have missed the best years of my life. And no one would ever
have known that the doctors were wrong in thinking I didn't have long to
live, and that the future held good things for me.
At the time I wanted to die I was suffering severe spinal pain. I
still have it now, and morphine does not entirely remove it. What has
changed is not my disability, or my pain. What has changed is simply my
outlook on life.
Mr. Delamothe appears to suggest that it is acceptable to sacrifice
the peace of mind of a majority of suffering people for a minority to
exercise their supposed "right to choose" their own time of death. In
view of this maybe he thinks it wouldn't have mattered much if I had been
killed unnecessarily all those years ago.
I suggest, however, that individuals do matter. Why should those
individuals who are suffering now and want to die be denied the chance
which I was given to change their minds, and to live, however long or
short that life might be. My experience is proof enough that life with
considerable disability and severe pain can still be worth living.
Alison Davis
Competing interests:
None declared
Competing interests: No competing interests
Dear Sir,
May I direct readers to the letter signed by over 30 leaders of
disability rights organisations and sent to all members of the House of
Lords at the time of the debate on Lord Falconer's amendment to the
Coroners and Justice Bill. This outlines their concerns about assisted
suicide legislation very well. It is reproduced below and is also
available on line (1).
The letter reads as follows:
'As leaders of the disabled people’s movement in the UK and the USA,
we are extremely concerned about how the proposed amendment to the
Coroners and Justice Bill will impact on the lives of disabled people.
If Lord Falconer’s amendment succeeds in the House of Lords on
Tuesday 7 July then those who assist ‘terminally ill’ people to go abroad
to end their lives in ‘suicide clinics’ would be immune from prosecution.
The phrase ‘terminally ill’ is not defined in the amendment, and could
apply to people with a very wide range of chronic progressive illnesses
some with life expectancy
stretching to decades.
Disabled people who experience progressive conditions understand far
more than non-disabled people about what it is live with these pressures.
We know what is acceptable as disease or disability progresses, and for
the huge number of us who say no to assisted suicide, it is because
we fear the changing culture such an amendment would bring. People without
experience of disability, including our friends and families cannot
predict what each stage of our personal journey will mean. Furthermore,
financial and emotional conflicts of interest will always present
an added burden to the situation. A law decriminalising assisted suicide
would undoubtedly place disabled people under pressure to end their lives
early to relieve the burden on relatives, carers or the state.
These concerns are not side issues that only affect disabled people.
We are like society’s ‘canaries in the coalmine’ who can often see the
dangers of potentially discriminatory legislation before others, as it
impacts on us even before the deed is done. We are scared now; we will be
terrified if assisted suicide becomes state-sanctioned.
The existing law, with the penalties it holds in reserve, causes
potential assisters and those wishing to die, to think very carefully
before acting. The discretion within the current law enables judges to
exercise compassion in hard cases. What is not broken does not need
fixing.
Disabled people have been largely silent in this debate which has
been carried out in the media by clerics, non-disabled commentators and a
small handful of individuals with terminal conditions who are supported by
Dignity in Dying. Until people like us are present to engage in this
highly complex and ethical debate, we must strongly oppose any device such
as Lord Falconer’s amendment to get assisted dying in through the back
door.'
Peter Saunders
1.http://www.carenotkilling.org.uk/pdf/disabledpeoples_leadersLetter.pdf
Competing interests:
None declared
Competing interests: No competing interests
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A Reasoned Observation?
Delamothe’s ‘Observations’ do not seem to be in the spirit of a
journal which aims to publish rigorous information that will influence
international debate. To have a view in favour of assisted dying is one
matter but to demean the courageous, thoughtful Baroness Campbell, who is
physically disabled , by describing her as a “star turn” is unfair.
Delamothe then dismisses Professor Finlay’s view as “sniffy”,
surprising language from an editor of a medical journal interested in
reasoned debate. Professor Finlay is an inspiring compassionate doctor
who has encouraged many doctors around the world to train in palliative
medicine and taught us much about engaging with suffering.
Delamothe admits that his observations include “a cheap shot” ,
perhaps if we wish to read a balanced debate on the issue of assisted
dying we should follow his example and read The Lancet.
Competing interests:
None declared
Competing interests: No competing interests