Examination of Witnesses (Questions 165
- 179)
THURSDAY 14 OCTOBER 2004
WITNESSES: MRS
PHYLLIS BOWMAN,
MRS CLAIRE
CURTIS-THOMAS
MP, MRS PAMELA
VACK, PROFESSOR
TIMOTHY MAUGHAN
and PROFESSOR ALAN
JOHNSON
Q165 Chairman: Good morning. I think
we should make a start now. Yesterday afternoon the Right to Life
group sent in a report of a survey which had been done of a hundred
Members of Parliament and I think we should circulate that, please,
whenever it is appropriate. Mrs Phyllis Bowman, I think you are
the Executive Director of Right to Life. We have invited you to
give oral evidence to us and you have arranged for the group who
are going to speak. I should say that we expect a short opening
statement from either one of you or from each of you depending
on how you can arrange matters. It is important that it be reasonably
brief because we have your written submissions, and then there
will be an opportunity for members of the Committee to ask questions
in elucidation of what you have said or in seeking further information
from you. The evidence is being recorded and a record of the evidence
in draft will be submitted to the witnesses so that they can correct
any misreporting. It is not an opportunity, you understand, for
altering the substance of what you have said, simply for ensuring
that what was said is correctly recorded. As skilled as the recorders
are in getting things right—they normally get it right—occasionally
something happens which is not absolutely accurate and there is
an opportunity to change that. We hope to finish about twelve-thirty
so you can adjust your submissions in accordance with that. I
cannot, of course, say how long the questions will be but nevertheless
that is our aim. Mrs Bowman, would you like to start and introduce
your group?
Mrs Bowman: Lord Mackay, members of the Select
Committee, I would like to begin very briefly by introducing the
members of our panel. On my right is Alan Johnson, who is Emeritus
Professor of Surgery at Sheffield University. He was President
of the Association of Surgeons of Great Britain and Ireland; he
is President Elect of the Christian Medical Fellowship and he
will be speaking very briefly. On my left—I sound like a
boxer—is Professor Tim Maughan. He is an oncologist and
he is Professor of Cancer Studies at the University of Cardiff.
Claire Curtis-Thomas is Labour MP for Crosby; she is Deputy Chairman
of the All-Party Parliamentary Pro Life Group. She became concerned
about the dignity of human life and euthanasia through involvement
in the care of her mother over a period of five years after an
extremely serious stroke which left her totally incapacitated
apart from being able to blink one eye. Sitting in the wheelchair
is Pam Vack. Pam is a former model; amongst other things she has
also been a writer. She became involved with Right to Life after
being diagnosed with Motor-Neurone Disease, the disease most often
highlighted by the Euthanasia lobby in trying to obtain legalised
euthanasia. Professor Johnson will first speak very briefly, followed
by Professor Tim Maughan. Pam is more than anxious to answer questions
but because of the condition of her throat she would like to begin
by giving a very brief presentation about herself. Claire and
I will answer questions.
Professor Johnson: For 40 years I have practised
as a general surgeon in the National Health Service and for over
thirty years I have taught medical ethics in the context of clinical
care to medical students; I have written extensively on the subject.
Just to explain, the Christian Medical Fellowship is an inter-denominational
organisation of some five thousand doctors from a wide range of
specialities and has a thousand student members. I think the central
issue in this debate is patient autonomy, the right of patients.
The impression has been given that obeying patients' wishes is
the over-riding ethical imperative for doctors. Of course it is
important, but it is not paramount. If it were, I would have done
many unnecessary operations and some harmful operations in my
time as a surgeon. Within health care we are used to limiting
the autonomy of a few for the sake of many others. By not passing
this Bill you will be limiting the autonomy and the rights of
a few—in my clinical experience very few—for the sake
of protecting the rights of the many in the future who would increasingly
feel pressure, real or imagined, to agree to having their lives
shortened. Most patients do not live in isolation; we must not
ignore the rights of the family and relatives. There is only one
brief mention in the Bill of the family. If the doctor is seen
as the agent for killing a father several months before he would
otherwise have died, without his wife and children knowing, I
can see significant repercussions on the doctor. I do not know
about doctors in Holland and Oregon but British doctors are not
paragons of virtue; they are fallible human beings. We knew that
even before the recent high profile cases. For society to give
one group, like doctors, the legal right to kill and assist suicide
is very unwise. Doctors themselves are only too aware of how poor
they sometimes are at prognosis and diagnosing depression in ill
patients. Doctors' attitudes would change if this Bill became
law, but subtly. Once assisted suicide is accepted, both doctors
and society would take a very different attitude to threats of
or attempted suicide cases. The message I am hearing is "Please
do not give doctors this power; in the long term we may not be
able to handle it". It will change the profession. Our responsibility
as doctors is to put all our energy into improving palliative
care even more. This is in tune with all the rest of Europe apart
from Holland. At the standing committee of European doctors recently
25 countries and seven associates signed a declaration that they
would not be involved in euthanasia. Even in those countries where
euthanasia is legal they would recommend their members not to
take part in it. Only Holland refused to sign this and even the
Belgian delegation signed up to it. We were represented by the
British Medical Association. I am unhappy about the conscience
clause. If this became law, would the doctor's attitude be a question
at interview for a job? Would hospitals advertise for doctors
who are prepared to undertake euthanasia or assisted death? How
would we prevent discrimination in practice? Although I am representing
a Christian organisation I am conscious that there are many other
major religious groups within the medical profession who are equally
unhappy with the concept of killing patients. The latest figures
show that nearly a quarter of doctors in Britain are of Asian
origin and, in the care of the elderly speciality, this rises
to nearly 30 per cent. Should the NHS be charged with providing
a service I can foresee discrimination against doctors applying
for certain jobs and I have no faith in the conscience clause
really being followed up in practice. Finally, I find clause 10.3
extraordinary—and I quote—"A physician . . .
shall be deemed not to be in breach of any professional oath or
affirmation"; when he clearly is. Dismissing them in one
sentence shows little understanding of the importance of these
oaths and affirmations which have guided our profession over thousands
of years and which came into being because of abuse and lack of
respect for human life in the first place. I did not know that
the law had the power to silence a doctor's conscience as easily
as that. Thank you.
Professor Maughan: I am also a member of the
Christian Medical Fellowship and I practise as a consultant clinical
oncologist in Cardiff, where my main practice is the care of patients
with bowel cancer, many of whom have secondary cancer and will
be dying, sadly, of their disease. I want to make four points
briefly, if I may. The first one is that this Bill clearly crosses
the Rubicon. As we look after people who are approaching death,
there can be seen to be a hierarchy of decisions: refusal of life
preserving treatment; withholding of life prolonging treatment;
withdrawal of such treatment because it is futile and burdensome;
pain relief amounting in some cases to terminal sedation; withdrawal
of food and fluids by artificial means. All of these are situations
in which the issues of informed consent, recognition of the futility
and burden of treatment and symptom control are our primary concerns.
The nearer these decisions come to the point of death, in some
ways the greyer the issues become and the more difficult these
decisions become; they are not easy. At the moment we have a clear
line, a clear line where we do not kill people actively by the
ending of a life by a fatal injection, which is what we are talking
about here. Legalising this—PAS and euthanasia—would
remove that clear line. To me as a doctor and to my colleagues
there is a very clear distinction between what we do now with
the removal of treatment and allowing nature to take its course,
and the active commission of death in this situation. Once we
step over this line we will diminish the value of life and that
will threaten the disabled and the vulnerable. The second point
is that this is a step which may lead to incremental change. As
you read this Bill as it is currently drafted, you may think that
maybe there will be 10 or maybe fifty desperate patients—such
as Dianne Pretty or Reginald Crew—who will get through all
the so-called protection in the Bill. However, I note that it
has been clearly stated that this may lead to an incremental increase
in the allowance of euthanasia; not a slippery slope but a step-wise
progression always pushing the boundaries with the expectation
that three to seven per cent of deaths due to terminal disease
would occur in this way in the not too distant future. We are
not talking about a few; we are talking about potentially thousands
of deaths in this situation. My third point is the quality of
the evidence with which you have been presented. One of the responsibilities
that I have is that I am Chairman Elect of the National Cancer
Research Network's steering group, which is the committee that
oversees clinical caner research for the UK. The National Cancer
Research Institute was established in 2001 and undertook a strategic
review of cancer research in the UK and identified a critical
weakness in research in palliative care. As a result a group has
been established in the last 12 months to develop research in
palliative and supportive care, and there is about to be an announcement
that MRC, Department of Health, CRUK, Macmillan and Marie Curie
are jointly going to be putting five million pounds on the table
to try to rectify this weakness in palliative care research in
the UK. What evidence have you been presented with? It is largely
observational studies of people from Holland and Oregon looking
at data in other health care systems which may not apply to the
UK. The UK data is largely derived from questionnaire, often supported
by one side or the other in this debate and I think that it is
so open to abuse that it lacks credibility. My question is: whom
do we believe, in this evidence regarding palliative care and
end of life care, a lobby group supporting euthanasia, or do we
value and support the combined weight of DoH, MRC, CRUK et cetera
in their analysis of the research evidence in this area? My final
point regards remaining weaknesses in the Bill. My main point
here is about the palliative care consultation. I think this is
inadequate and it is tokenism. I have seen so many people who
have been seen by a nurse or a doctor on the ward and just to
talk about palliative care on one situation does not address the
issue. If I illustrate with one case from my last two weeks of
practice, just two weeks ago in my clinic I was talking to a lady
with advanced bowel cancer who lived alone and was a very independent
minded person; she was very ill. She was very, very reluctant
to undertake any palliative care or to be admitted to the hospice,
which is what I believed she needed. She did agree. I saw her
last week and she was completely different. She was radiant; she
was smiling. She had received the benefits of an in-patient palliative
care admission and the transformation was dramatic. Our experience
with the people who talk to us about these situations is that,
when they have the full support of the services that are available,
these requests disappear. I think that the Bill in relation to
the psychiatric assessment is also missing the point about the
depression that many of these people feel as a reaction to their
terminal situation that takes time to work through and time for
the treatment to work. To allow just 14 days is entirely inadequate.
I think I will stop there.
Mrs Vack: My Lord Chairman, ladies and gentlemen,
it is a privilege to be invited here today to give evidence to
your Committee. I personally support and uphold our present laws
on euthanasia making it a criminal offence to be implicated in
assisted suicide. I see no good reason to change our laws in order
to give way to a right to kill. I personally speak for a vast
number of vulnerable, elderly, disabled and infirm, knowing that
if euthanasia is legalised we can never put in place sufficient
safeguards. We go down a slippery slope towards a minefield of
problems occurring where safeguards would be open to much abuse
as they have been proved in The Netherlands, where a third of
all euthanasia is conducted contrary to a patient's wishes. Sadly
we live in a disposable society; life is not valued and many elderly
sick feel they are a burden. Their lives are not worth living;
they are made to feel an inconvenience. I deplore the loud lobby
for voluntary euthanasia attempting to cause panic and fear among
those suffering chronic illness: "Why do you not end it all
when the going gets tough, the pain unbearable?" Or: "You
may even choke to death". It is not surprising that some
people are panicked and made to think that they just want death
without proper knowledge and much needed information to reassure,
as I have been, that all pain and respiratory problems can be
alleviated at all levels. I have no fear whatever of choking to
death. Anyone seriously ill should have the choice and option
of free medical help available. Personally I am reassured that
we have the finest hospice care, the envy of the world, where
doctors minimise suffering and maximise the quality of life. Their
priority is for the maintenance of health and preservation of
life, controlling symptoms when a cure cannot be achieved. Defining
suffering is impossible; it is what a patient says it is. Seventy-four
per cent of doctors would not want to be turned into destroyers
of life, rather defenders of life as they have always been. Let
us retain our confidence as we approach those vulnerable years
of ageing and loss of health, knowing that our laws are set in
place to protect and value life at all stages. Thank you.
Q166 Chairman: Thank you very much.
From what you said earlier I assume that completes the preliminary
presentation.
Mrs Bowman: Yes, it does.
Chairman: I now invite members of the
Committee who wish to ask questions of those who are witnesses.
Baroness Finlay?
Q167 Baroness Finlay of Llandaff:
Perhaps I might start by asking Mrs Curtis-Thomas, whom we have
not heard from yet. Thank you very much for your personal account,
which is recorded in Hansard from Monday and certainly made very
moving reading; it is very powerful. I wondered whether you felt
the role of Parliament is in putting in safeguards and looking
at the practicalities of a change in the law in an area such as
this, and also whether you felt that a committee like this should
be seeking the views of the Department of Public Prosecution,
the Crown Prosecution Service and the Home Office in our deliberations?
Mrs Curtis-Thomas: Thank you very much for your
kind words. I think some of the difficulties that face both Houses
in relation to this issue is that there are not only technical
matters that need to be considered but there is this whole ethical
dimension, which certainly I feel personally very ill-equipped
to deal with. I have a very personal experience and as a parliamentarian
we are asked to set those aside and look at the larger picture;
I find it impossible to do that. The Mental Capacity Bill that
is currently going through the Commons at this time and your considerations
here are seeking to improve and safeguard individuals from unnecessary
prosecutions, and I think that is a commendable activity. We do
not want necessarily to criminalise individuals for executing
something that they believe in passionately. However, at the same
time, if we actually go forward and legalise euthanasia, I think
what we actually do is send an incredibly poor signal to the rest
of society about the disposability of life. I very much concur
with the view that legislation in this area would do us greater
harm than it would do greater good.
Q168 Baroness Finlay of Llandaff:
Could I follow up with a question perhaps to Professor Maughan?
When you were talking you spoke about requests that disappear,
and I wonder if you can tell us from your own experience what
euthanasia requests you have had.
Professor Maughan: Three patients have asked
me to end it all in the last 12 years of my work as a consultant.
All three had advanced cancer and were responding to that and
were in a relatively depressed state at the time. Perhaps I can
illustrate with one just to show the way I think this can be helped.
Here was a man who was paraplegic, with spinal weakness, had lung
cancer, could not breathe and just felt there was nothing to live
for. We were able to discuss with him the situation at home, the
fact that he was a golf pro, he wanted his autonomy but he lived
in a tied house and his wife had nowhere to live once he died.
He also had a son whom he had issues with. Discussing with him
the wider context, relieving his physical symptoms, all of those
requests to end his life just disappeared. I think this is what
we see again and again. When we look at people in the round in
the vast majority of cases—certainly in each of the cases
that I have seen—that request has disappeared. The other
point is that doctors can be wrong. In my clinic last year I had
a patient who came in with her husband. The husband was in a wheelchair;
she had advanced pancreas cancer. Seven years before, that husband
had made a request for euthanasia because he had a spinal tumour,
and he was told by his oncologist and his orthopaedic surgeon
that he had three months to live. He did not; he was still alive
and well. The tumour had in fact been controlled; he was paraplegic.
Doctors can be wrong, we must remember that.
Q169 Baroness Finlay of Llandaff:
Can I ask you what the attitude is of your other colleagues in
the oncology sphere, because you could be considered to be a lone
voice?
Professor Maughan: I know that my views are
shared by all my colleagues at Velindre Hospital, which is the
cancer centre; there are 15 other consultants there. Geriatricians
have published a survey which shows that 81 per cent are against
euthanasia and, in the Right to Life survey, of the sub-set of
doctors who are in palliative care 100 per cent were contrary
to euthanasia. I think there is widespread opposition to this,
particularly among doctors who are dealing with people who are
dying. As you get further away into general practice there are
different issues because people feel out of their depths sometimes
dealing with people who have very difficult symptoms. But when
you are in the specialist world where most of these patients are
being dealt with, the doctors are very strongly against this.
Q170 Chairman: Could you give us
details of the various surveys to which you have referred? I do
not mean just now, but could you send them to us?
Professor Maughan: I have references to the
geriatricians and to palliative medicine; my own colleagues' views
are from informal conversations.
Mrs Bowman: I can leave behind the results of
our survey that was carried out by the biggest doctors' IT network
in the country. They had the final say on the selection of the
doctors, and also the company which carried out the survey had
the final say on the questions.
Q171 Chairman: I just want to be
sure that we can refer readily to the details.
Mrs Bowman: I have the details of the survey
here.
Chairman: Thank you. And also to what
Professor Maughan is referring to, so that we are as complete
in our record of these surveys as we can be.
Q172 Baroness Finlay of Llandaff:
Mrs Vack, thank you very much for your evidence and making the
effort to come to us today. I was glad to hear that you are aware
of the evidence that people with Motor-Neurone Disease do not
choke to death and that this is mis-information which is very
widespread. I just wondered why you felt that so many of the public
feel that the only way to die with dignity is to have euthanasia,
where you feel, as a patient who has been subject to needing to
get information, this has been coming from.
Mrs Vack: I have stressed that it is imperative
that people who have chronic or terminal illness are alleviated
of those fears. If only they could be fully informed of the care,
the alleviation of pain, as I have been totally reassured, thank
God, and I have no fear at all as I know I am increasingly getting
worse in my own situation. I have had those fears alleviated knowing
full well that all the care with regard to possible choking, breathing
problems, pain, will be alleviated.
Mrs Bowman: I wonder if I could say something
on this and then Professor Maughan. I have been interviewed frequently
on television and on radio regarding this and I have had two people
very, very close to me who have died. My sister died. She had
bowel cancer for eight years; she was on massive doses of morphine.
She had lived in Spain for 29 years and she used to go to Spain
for about three weeks every year to see all her friends, taking
her morphine with her. She died in a hospice and she died without
pain. Only six weeks ago my niece—whom I regarded as my
daughter, she grew up with me—died from cancer and she died
without pain. On the last day of her life the hospice doctor and
nurses explained that all they could do now was to make her comfortable.
Because of the stories that she had heard on radio and other things
from the Euthanasia lobby her daughter went into the most appalling
panic and demanded to see the doctors whom she had known for some
weeks, to make sure they were not shortening the life of her mother.
They said they were not; they were just making her comfortable.
The fact is that, when I have told these stories on radio and
on television—BBC in particular, I have been greeted with
astonishment: "They had no pain at all?" I have said,
"They had no pain at all". They are getting a medieval
interpretation of medicine which bears no reality whatsoever to
what is happening and what is available today. I am not saying
that that is always so in hospitals, so far more should be done
to promote palliative care. I know from my own experience, two
people very close to me, they died without any pain and suffering.
Q173 Lord Carlile of Berriew: As
a former lay member of the General Medical Council I have a question
which I think is primarily aimed at Professor Johnson and Professor
Maughan. It seems to me that if euthanasia is permitted by law
there will be an array of complaints of various kinds—possibly
from both sides as it were of the argument—to the General
Medical Council. I wonder if our experts—and perhaps particularly
Professor Johnson with his deep and long experience of medical
ethics—could comment on the capacity, or possibly even the
adequacy, of the sole medical registration body in this country
for dealing effectively with such complaints and producing policy
which would be sufficiently clear in ethical terms to guide doctors
at all levels.
Professor Johnson: I think one of the problems
we are coming up against is that law has difficulty in the way
it defines and controls behaviour. I think, as you rightly say,
we would get complaints from both sides in different ways and
I think doctors would be put into very difficult situations—as
I mentioned before—by relatives possibly complaining that
they had done this and from patients complaining that they had
not. I think the General Medical Council is a body that has looked
at a lot of things but I am not sure it is set up correctly for
this sort of decision. It largely deals with obviously gross deviation
from good medical behaviour, and I think you might have to alter
its terms of reference perhaps to look at these ethical issues
in more detail because the law would not be clear enough, to guide
it in what to do.
Professor Maughan: I would certainly share those
concerns about the ability of the GMC to be able to oversee this
situation effectively.
Q174 Lord Carlile of Berriew: One
of the experiences one has had with the GMC—and I admit
I am now five years out of date, but I spent 10 years there—is
that rather more complaints than people realise are made by doctor
against doctor— very properly in many cases, but this seems
to me to be an area which would cause particularly great difficulty?
Professor Johnson: I think that this would split
the profession. There are already signs of it in Belgium particularly,
that doctors are polarising, even within the same hospital. In
Belgium one unit has already put up a notice saying they are not
going to do it to reassure patients; but if, in the same hospital
or even in the same department, you have people with different
views it is going to be extraordinarily difficult and the team
work, that we have been so long striving to obtain, would break
down. I think it would split the profession.
Q175 Lord Joffe: I will start asking
questions of Mrs Bowman as she put in the original submission.
Mrs Bowman, do you accept that there are some patients for whom
palliative care will not meet their needs?
Mrs Bowman: I am sorry?
Q176 Lord Joffe: I said, do you accept
that there are some patients for whom palliative care will not
meet their needs?
Mrs Bowman: It is possible, but here again Professor
Maughan has referred to the call from his own ethical bodies calling
for more research to extend that. I do not think that killing
is an answer to the fact that palliative care does not necessarily
reach everybody at this stage.
Q177 Lord Joffe: I do not think you
have answered my question. I asked you, do you accept that there
are some patients for whom palliative care will not meet their
needs?
Mrs Bowman: There may be some at this stage.
Q178 Lord Joffe: As a result they
suffer terribly. What should be done for such patients?
Mrs Bowman: Which patients are you referring
to? The patients we are hearing about at present from the media
and from the Euthanasia lobby are mainly Motor Neurone Disease,
where there are terrifying stories of them. Dianne Pretty said
that she was terrified of choking to death; so did Reginald Crew,
who also said he was terrified of choking to death— and
that is not an option, that is not the reality if people are given
proper care now.
Q179 Lord Joffe: What I am talking
about is what the BMA acknowledge, that there are some patients
for whom palliative care will not meet their needs and wishes.
The National Council for Hospice and Palliative Care have also
made a similar statement. Macmillans have made a similar statement.
I am talking about those patients.
Mrs Bowman: I would accept what they say.
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