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:b3446All rapid responses
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Further to my earlier submission, I feel I must mention more on the
Tony Bland case.
Tony Bland was a football fan severely injurred during the Hillsborough
desasster. Hs injuries left him in a coma. His doctors concluded that
although he could breathe unaided, there was no other response from him
and no way of communicating with him. They also concluded that there was
no hope of recovering consciousness, although he could live for another
thirty years in the state which his doctors termed persistant vegetative
state that he was in.
The doctors and his parents applied to the courts to have his feeding
tube removed. after deliberation the courts agreed. So Mr Bland's feeding
tube was removed, thus starving him to death.
If that is not physician assisted euthanasia without consent I don't
know what is.
The doctors went against the law of the land which the courts
overuled.
contrary to ths doctors conclusions, comatose people often do recover
concsiousness in varying degrees with the right help.
So even now although assisted suicide/euthanasia is illegal in the
UK. It is broken because of the powers of the courts and disabled and
other groups of vulnerable people have every cause to be worried.
Competing interests:
None declared
Competing interests: No competing interests
As a severely disabled person I am very saddened by Mr Delamothes
article:- Assisted dying. What has disability got to do with it?
He has ignored the fears of a large group of people who he seems to
think will not be affected by decriminalising assisted dying. I do not see
why we need to change the law on assisted dying/euthanasia.
No matter what safeguards are put in place supposedly to protect the
elderly,the disabled, the mentally ill and other groups will be broken and
abused. One has only to look at studies in Holland to see the evidence.
Even in the U.K.the courts allowed the death of Tony Bland who was in
a persistant vegetative state according to his doctors, but he was not
dying. That case has since been enshrined in law allowing other people to
apply to the courts to allow patients in PVS to die, but not all the
patients were strictly in PVS. So the Bland Judgement is being abused
already.
Competing interests:
None declared
Competing interests: No competing interests
Tony Delamothe’s article (“On the contrary”) is right about one thing
- that we should not equate disability with terminal illness. Not all
disabled people are terminally ill, though it is a fact that many
terminally ill people are disabled in one way or another by their illness.
The vulnerability of disabled people to collateral harm from the
legalisation of ‘assisted dying’ depends essentially on the impact that
their illness has on their lives, the degree of dependence on others which
it brings and the beliefs of some that their lives are in some sense less
worth living. In this respect it is undeniable that many disabled people
are more vulnerable than most – as Dr Delamothe appears to recognise,
albeit somewhat grudgingly.
It is also worth noting that the strident campaign that is being
waged to legalise assisted suicide for the terminally ill is being built
around a lady, Debbie Purdy, who is disabled and chronically ill rather
than terminally ill – i.e. likely die to within a few months. Large
numbers of disabled people find themselves in just this situation. It is
hardly surprising therefore that they view with concern the underlying
message of the campaign - that, if you have a disabling and degenerative
illness like Ms Purdy, the way should be cleared for you to have assisted
suicide.
Dr Delamothe’s main thesis, which is summarised in the opening line
of his article, is that “the debate on assisted dying has been hijacked by
disabled people who want to live” and that “it needs to be reclaimed for
terminally ill people who want to die”.
One would hope that the supporters of an ‘assisted dying’ law would
see it as providing a narrowly-defined facility to be exercised under
wholly exceptional circumstances. Simply limiting it to “terminally ill
adults of sound mind who want to die” is not nearly sufficient to meet
this requirement. A means also has to be found of filtering the handful
of determined applications by strong-minded individuals from the much
larger number of potential requests from less resolute people who consider
ending their lives because they feel they are a burden on their families
as a result of the dependence their illness imposes or who are suffering
from suicidal depression or (and we have to face the unpalatable fact that
it exists) who may be being pressured, however subtly, in that direction
by others. By contrast, Dr Delamothe’s vision of ‘assisted dying’ seems
somewhat laissez faire. . He sees it rather as an ‘option’ to be made
available to those who ‘want’ it – or say they want it - rather than an
exceptional resort for a very small number of resolute individuals. His
article does not suggest that he has understood the seriousness of the
fundamental change in the criminal law that he is advocating.
Dr Delamothe cites my article in The Lancet on Dying and Choosing.
His argument is not easy to discern. Suffice it to say, however, that the
point I was making in The Lancet is that, if (as now seems to be the case)
‘assisted dying’ is being justified on grounds of personal choice and
control rather than unrelievable suffering, it has effectively lost its
link with terminal illness and is therefore more open to drift to
encompass people who are not terminally ill.
Dr Delamothe also cites, in support of his view that ‘assisted dying
should be legalised, the recent shift of the Royal College of Nursing
towards a position of neutrality on the subject and he contrasts this with
the BMA’s recent vote confirming its opposition to a change in the law,
which he says was based on “votes numbering in the low hundreds from an
organisation with more than 140,000 members”. Presumably, in the light of
these remarks, Dr Delamothe will be challenging the RCN’s change of
stance, which was based on the views of just 1200 nurses out of a total
membership of 390,000? He calls for “a carefully worded secret ballot”
(one wonders what ‘carefully-worded’ means) of BMA members. Indeed, let
us have one – Dr Delamothe may be surprised by the result given that polls
of doctors consistently show that nearly three out of four are opposed to
any change in the law. But let us have one among RCN members too!
Dr Delamothe claims that the Archbishop of Canterbury led the
opposition to Lord Joffe’s ‘assisted dying’ bill three years ago. If he
had read the Hansard record of the debate, he would know that this is
nonsense. Lord Joffe’s bill was challenged, not by any of the bishops,
but by Lord Carlile, a barrister who is not affiliated to any religious
persuasion; and that the overwhelming majority of the interventions
against the bill expressed concern over the dangers to public safety
rather than private morality. Dr Delamothe is simply recycling well-worn
propaganda of the pro-euthanasia movement.
In summary, while I agree on the need to avoid equating disability
and terminal illness, I believe Dr Delamothe is under-estimating the
pressures which a change in the law would place on disabled people, not
least as a result of an ‘assisted dying’ campaign for the terminally ill
that is being built around a disabled person who has a progressing chronic
illness rather than is currently terminally ill.
Competing interests:
author of one of the papers he comments on
Competing interests: No competing interests
Tony Delamothe takes issue with those labelled as 'terminally ill' or
'disabled' - a vociferous minority - for spearheading opposition to
Dignity in Dying's campaign for assisted suicide - a campaign currently
headed by Debby Purdy, in a long line of activists primed by Dignity in
Dying to win public sympathy and support.
Tony Delamothe, whom I presume is not terminally ill or disabled,
irritably seeks to dismiss the opposition of this minority and their
desire for life because he wants to foist the right to die on the rest of
us. However, this 'spearhead' of the terminally ill and disabled, also
represent very many peoples in various stages of chronic illness too
ie.the vulnerable. The vulnerable are a burgeoning group which includes
your elderly and sick parents and mine, and any other relative who may
feel under intense pressure to save sons, daughters, nieces and nephews
the stress of having to take on caring roles as health and faculties
diminish with illness and age. As such, therfore, this is not a
vociferous minority, but a body representing the bulging demographic of
the baby boomers, a much larger membership than those paid up members of
the minority group, 'Dignity in Dying'or the 'Voluntary Euthanasia
Society' as they were called until recently.
Life has always been seen as good and it always will be. It is a
right. This is ably displayed by the number of procedures very ill people
will undergo to give themselves a few more weeks, months or years of life.
The day that we legislate against this principle and force doctors to work
against the Hippocratic Oath, will be a sad day, and indeed, who is to
know how many more Harold Shipmans are out there waiting for their moment?
The 100+ people out of 61 million in this country, who have travelled
to Switzerland to take their own lives cannot be allowed to impact on
British Law. Down through the centuries, our Laws have been passed for the
common good. Assisted suicide is not for the common good. We allow it at
our peril.
Competing interests:
None declared
Competing interests: No competing interests
Tony Delamothe clearly feels an injustice exists in the way that
assisted dying is being portrayed.(1) His defence of the right to patient
choice seems entirely reasonable. But there is an irony in his complaint
that disability ‘lobby groups’ have hijacked the debate, since this reads
like another example of the views of disabled people being sidelined.(2)
His criticism of the BMA having ‘flip flopped’ on assisted dying ignores
the reality that two thirds of doctors remain against a change in the law,
with the highest proportion (up to 91%) in the specialities of care of the
elderly and palliative medicine.(3) Presumably he believes that doctors
who regularly care for dying patients are another lobby group hijacking
the debate.
He reserves his strongest criticism for those who express the fear
that people with non-terminal illness will start accessing assisted dying.
His assertion that such a view is a ‘cheap shot’ implies both unfairness
and factual error. The facts are that in Switzerland as many as two
thirds of people accessing assisted dying do not have a terminal illness
and that the proportion rose by half between 1990 and 2004.(4) In the
Netherlands, assisted suicide or euthanasia are acceptable as long as the
patient considers their psychological suffering to be intolerable, even if
they are physically fit. This liberal approach demands close regulation
and agreement, and yet large differences are seen between Dutch doctors in
their judgement of suffering.(5)
It is not the debate on assisted suicide that is being hijacked, but
the right of patients and the public to the evidence needed for an
informed choice.
1. Delamothe T. The assisted dying debate has been hijacked. BMJ,
2009; 339: 484.
2. Office for Disability Issues. An In-Depth Examination of the
Implementation of the Disability Equality Duty in England. London:
Department of Work and Pensions, 2008.
3. Seale C. Legalisation of euthanasia or physician-assisted suicide:
survey of doctors’ attitudes. Palliative Medicine 2009; 23: 205–212.
4. Fischer S. Huber CA. Imhof L. Mahrer Imhof R. Furter M. Ziegler
SJ. Bosshard G. Suicide assisted by two Swiss right-to-die organisations.
Journal of Medical Ethics. 2008; 34(11):810-4.
5. Rietjens JAC, van Tol DG, Schermer M, van der Heide A. Judgement
of suffering in the case of a euthanasia request in The Netherlands.
Journal of Medical Ethics, 2009; 35: 502-7.
Competing interests:
None declared
Competing interests: No competing interests
Editor
It is a shame that in a rush to condemn Delamothe's deliberately
provocative comments on the role of the disability movement in opposing
assisted suicide, which were deliberately provocative in order to stir
debate, the other half of his message has been virtually ignored in the
rapid responses. Concerns expressed that disabled people with valuable and
meaningful lives might be under undue pressure to die prematurely, or
victims of medical nihilism are totally understandable. Even for those
with burdensome long term conditions or who are terminally ill , it is
also completely understandable that various commentators from the
palliative care movement assert that if only better palliatve care were
available for all, if only misguided fears about distressing death or
worries about being "a burden" were confronted, if only the underlying
depression or anxiety leading to a wish to die were recognised and
treated, then no-one would want assisted suicide. In reality, there are
many people out there, cognitively intact, free from outside coercion,
with sufficient information and decision-specific capacity to decide that
they want to choose the time and manner of their own departure. And many
of them are not suffering intractable symptoms in need of palliation. They
have simply decided autonomously that they have had enough. And who are we
to second guess them?
Of course we need to have enough safeguards to ensure that people
don't feel "obliged" or pressurised to die. Of course, most doctors may
feel that they do not wish to be involved in assisting suicide or
euthanasia and that this is consistent with the ethical underpinnings of
the profession. But for all this, when we talk of the "slippery slope" we
must remember that it has two sides. The slope less often highlighted is
the one where a minority (sometimes arguing from religious premises)
opposed to assisted suicide compromise the autonomous wishes of large
numbers of (often secular) individuals. I would not want to be involved in
assisted suicide myself but I have treated many patients, not depressed,
not in intractable pain, not under any coercion, not cognitively who have
told me in no uncertain terms that they have "had enough" or "dont want to
wake up" and asked "can't you just give me something doc". It is
professionally arrogant to discount their views
David Oliver
Competing interests:
None declared
Competing interests: No competing interests
Assisted Suicide - "Doctors steer clear"
I very much agree with the opinions expressed by Baroness Julia
Cumberlege. Having practised through the period of introduction of the
Abortion Act of 1966, I see a clear parallel in the attempts to legalise
physician assisted suicide. We were assured, I am sure in good faith, by
David Steel that termination of pregnancy would only be available on the
certificate of two doctors 'in good faith' but we all know that the end
result has become 'abortion on demand.' I greatly fear that introducing
the law into this field would similarly lead down a slippery slope to
patients feeling obliged to ask for 'euthanasia,' and the loss of trust
between patient and doctor at the end of life.
Ronald NC Douglas, BSc, D.Obst.R.C.O.G, F.R.C.G.P.
[31 Burnhead Road,
Newlands,
Glasgow G43 2SU]
Competing interests:
None declared
Competing interests: No competing interests
Tony Delamonthe asks to be shown "easy cases" regarding assisted
dying. He then takes on the task himself, quoting Harris and Times polls
showing that a majority agree that "terminally ill people should be
allowed to die"--as if that were not in the cards already. He uses these
results as evidence that the laws about assisted dying need to be changed.
He also asks why the rights of the disabled to be free from coercion
to kill themselves supersedes the rights of the terminally ill to freely
kill themselves. The answer is simple: because life trumps death.
According to his argument, the desire for death by a few trumps the
desire for life by many, whom, he acknowledges, might face pressure to die
--or have that decision made for them. In other words, the right to die
becomes the obligation to do so.
No one should have to defend why they want to live.
Competing interests:
None declared
Competing interests: No competing interests
Tony Delamonthe highlights the way in which those opposed to assisted
dying are trying to consolidate their position around “the vulnerable”
just as Ilora Finlay argues that its supporters seem to concentrate on
“autonomy”. There is of course a whole spectrum of opinion and arguments
with no very clearly defined lines except at the extremes. Apparent
concern for the “the vulnerable” allows a more united opposition as those
whose views are dictated by objections based on a particular religious
view without mention of their personal views about God. Evidence is
limited but one survey suggested the views of those with disabilities is
more in line with those of the general public than with those who profess
to speak on their behalf. Meanwhile the “vulnerable” are used to resist
law change. At the time of the Joffe Bill it was deplorable that some of
those with major intellectual disabilities were used totally
inappropriately to raise emotional objections to the Bill. Similarly ,
some years ago at the time of a high profile case the argument was made
that someone with a severe disability who was refusing life sustaining
treatment should be kept alive on a ventilator because of the disability. This would be a way of showing that Society valued their existence.
Currently the majority -but by no means all - of doctors seem to accept
that there are circumstances when the withdrawal or withholding of
treatment can be justified on medical grounds and patients with capacity
can refuse potentially life saving interventions. Just how we should
protect the so-called vulnerable from excessive medical intervention seems
a much more clinically relevant issue but one on which those who should
speak on their behalf seem relatively silent. There seems no intention to
move beyond the emotional and engage in a debate about trying to see how
the “vulnerable” might be protected when the law on assisted dying
changes if that is what is needed for reassurance. Perhaps we should
consider specifically excluding any disability from being a qualifying
condition unless it is in a terminal phase?
Competing interests:
Member of Dignity in Dying
Competing interests: No competing interests
Euthanasia and assisted suicide
Mr Delamothe`s editorial on assisted suicide and euthanasia skirts
around the real issue. People unfortunately kill themselves every day, but
the issue at stake is whether this is acceptable behaviour, and whether it
should be encouraged and sanitised, and the tabooes and stigma surrounding
it be air brushed from conscience. The debate taking place under various
smoke screens is in essence about the morality of self harm in its extreme
form, and about quality control of lives. We already are autonomous, and
we can and do do what we please, so whats all the fuss about? People who
want to kill themselves want others to do it as well, so they dont feel so
bad about it, and want that it becomes an acceptable behaviour. What hurts
is when what we do or would like to do, is frowned upon by society or
authority.... so lets get them to endorse our behaviour, and our
conscience will somehow be at rest. The opponents of euthanasia and
suicide or assisted suicide, value life for what it is. It is something we
are gifted with and which is ours to protect as long as is lasts. The
quality of that life is not what we or others calculate, since we are not
the creators of life and really dont know much about it. From a scientific
point of view it began at a definite time for each person and will finish
at a definite time for each person. In between we have to live it as best
we see fit because when its gone, its gone and from a human point of view
thats all we know. I support the protection of life for all, because its
definite and its all we have, and if there are issues making it burdensome
they can and should be treated or at least palliated.
Competing interests:
None declared
Competing interests: No competing interests