Examination of Witnesses (Questions 180
- 199)
THURSDAY 14 OCTOBER 2004
WITNESSES: MRS
PHYLLIS BOWMAN,
MRS CLAIRE
CURTIS-THOMAS
MP, MRS PAMELA
VACK, PROFESSOR
TIMOTHY MAUGHAN
and PROFESSOR ALAN
JOHNSON
Q180 Lord Joffe: Bearing in mind
then that these patients are suffering terribly, what would you
propose should be done for them?
Mrs Bowman: Everything possible to alleviate
their suffering. I would prefer to pass that message on to Professor
Johnson and Professor Maughan because they will know more about
the medical care which is available to them. However, I do not
think that equating killing with palliative care is a sensible
course to go down.
Q181 Lord Joffe: Do either Professor
Maughan or Professor Johnson wish to come in on that?
Professor Maughan: Yes, we know in all spheres
of medicine that medicine is limited and there are patients in
whom the symptoms are very difficult to control. We know that
palliative medicine is actually a relatively young speciality
and, as I have indicated, is a speciality with a limited research
base which is improving and developing quite rapidly at the moment.
Yes, we do have patients who do have very difficult needs and
very difficult symptoms, and there are times when patients' needs
for pain control are such that their pain control needs to be
increased so that they are almost asleep, because you cannot distinguish
the two. I think anybody working in the field would recognise
difficult cases and recognise the shortcomings. But the situation
now is that we are constantly striving to improve the level of
care and improve the ways of looking after such patients. Advances
are being made.
Q182 Lord Joffe: Until those advances
are to be made—assuming they will be made—what is
to happen to these people?
Professor Maughan: One of the problems with
palliative care is that it is very patchy. In our own environment
in Cardiff we have a fantastic palliative care service, and I
know and am confident that even the people with the most difficult
symptoms will have their needs addressed, even if it means making
them very sleepy. The problem at the moment is that there is a
lack of palliative care; the provision of palliative care is variable
across the country and that is something we need to bring up to
a certain level. Surely our first response to this is— let
us let everybody have access to the same high quality of care
that is currently available in certain centres. That should be
our first response.
Professor Johnson: I would like to make the
point from experience of 40 years how the changes have taken place,
and we are looking forward with this Bill—we are not looking
back. When I first started in practice, the whole idea of palliative
care in hospices was just starting, and I can think of some examples
where we were very bad at managing symptoms at that time. The
improvement and the effect on general care in hospitals has been
dramatic; it is not just in hospices and palliative care institutes,
it is in the general care of our pain relief as general surgeons.
The effect has been right the way through medicine. Now all our
students go through a palliative care module as part of their
medical training. The next generation will be much better trained
than we were in this area.
Mrs Curtis-Thomas: Lord Joffe, you referred
to individuals who were experiencing unbearable suffering, I think,
and what was the solution for them. I think implicit in your question
was that we were dealing primarily with people with a very degenerative
condition and an inevitable death. However, there are of course
thousands of people in this country today who have very difficult
lives through a disability that they may have acquired through
a stroke, and historically the treatment of people who have been
rendered exceptionally physically incapacitated has been far from
perfect. People who have had a stroke and are severely disabled
by it may live with that condition for many, many years. However,
in the last 10 years we have seen enormous improvements to accommodate
people with a range of a disability so what would have been considered
by many as unbearable suffering 10 years ago has rapidly changed
in the last 10 years. People like my mother, and many others who
are rendered totally incapable through a stroke, today have very
different lives; they are no longer at the margins of society
because people, I think, generally recognise that such people
have a contribution to make to society irrespective of their physical
capacity. Unimaginable suffering can be alleviated not through
drugs but through society's response to that disability and the
structures that we create to enable those individuals to lead
far more constructive and positive lives.
Q183 Lord Joffe: I accept that there
have been great advances in medicine and a great deal which was
not possible to control in the past is now possible. But what
we are talking about for the purpose of this Bill is to enable
people who are suffering terribly and who do not see palliative
care as the answer to their suffering. The patients we are talking
about, their main concern is not pain, which I accept in time
it might be possible to almost completely control; it is about
lack of control, total dependence, incontinence, no quality of
life. It is this particular group of people who suffer most, and
some of them wish to have the opportunity to die and to bring
their suffering to an end. It is about this I am referring. Let
me make it clear that I am totally in support, and the Voluntary
Euthanasia Society among others are totally in support, of palliative
care and feel that more resource should be applied and that it
is the solution for most dying patients, but there are some who
fall outside that.
Professor Maughan: What you are talking about
are people who are seriously disabled by a progressive condition
and who feel that their disability renders their life valueless.
Is that what you are saying?
Q184 Lord Joffe: Yes, and who feel
that their quality of life is not worth living. That is their
view.
Professor Maughan: Some of those people are
expressing a desire to die. If we take a broad group of disabled
people, most of those are saying that they very much want to live.
If we extrapolate and if we look across the whole range of humanity,
there are some people who desire to die. Our response to them,
out of this situation, is that we address that issue of their
desire to die and we give psychiatric support and care to them.
We recognise that that is an issue, and in some situations they
may sadly commit suicide. But what you are saying is that this
group of patients, because of the disabilities resulting from
their illness, are very depressed, we should actually listen to
them and just get on and kill them.
Q185 Lord Joffe: That is not at all
what I am saying. What I am saying is that these individuals—who
are competent adults only—have thought carefully about their
position and feel that it is not acceptable to them to carry on
in a life which has no quality left and they ask for assistance
to die in order to bring their suffering to an end. That is what
I am talking about. To suggest, as you are suggesting I think,
that they must be mentally disturbed and need psychiatric treatment
is quite remarkable. Some would benefit from psychiatric treatment
and some would not. Do you believe in personal autonomy to make
decisions?
Mrs Curtis-Thomas: Could I just add something
further? The conversation we are having is centred on the physicality
of an individual, the function of a body, and for many people
they are either born or acquire a dysfunctional body. That body
may be progressively dysfunctional. However, what we seek to do
is to support the spirit that exists within that body. They are
two entirely different entities. Physical difficulties should
be and can be overcome. Because somebody is incontinent it does
not make them less viable; it is not something to be ashamed of,
it is just a condition to be managed. What should be celebrated
and developed is the spirit of the individual contained within
that. If the body lets them down, does that really make any difference?
Should we say, "It's all right for you to end your life?"
I think it would send an incredibly bad signal to others who are
facing similar disabilities and do not see their lives as worthy
of ending, because it is just a body and nothing more than a body
that captures a spirit.
Chairman: This is developing into somewhat
of an argument, and I think at the moment the function of the
Committee members is to ask questions and to have them answered.
Lord Taverne?
Q186 Lord Taverne: First of all,
I would like to ask a question of Professor Johnson. He made a
very important point when he said that he thought that if the
Bill were passed it would change the medical profession. Would
he not agree that the most important thing to do in looking at
what the effect would be of a change is to look at the experience
we already have? The country which has had most experience of
this is The Netherlands. Does he not think that we should pay
quite a lot of attention to the fact that a very careful study
which has been done showed that out of 11 countries studied—including
the United Kingdom—the country where there was much the
highest regard for doctors and the greatest trust in doctors was
The Netherlands? Again, another careful study showed that it was
doctors in the Netherlands who discussed end of life medical decisions
with their patients much more freely than in any other country.
Is that not something which suggests that his fear may be displaced?
Professor Johnson: No, my fear about introducing
it into this country is that I do not think that there is that
trust in doctors that there appears to be in The Netherlands and
we are introducing it into a very different situation. The trust
in doctors over recent years is not nearly as high as it was.
We do not actually know what attitudes are changing in doctors;
we have not looked at the slight, subtle changes that go on. To
take an example, if we legalised assisted suicide, gradually the
attitude of both ourselves as doctors and society to attempted
or threatened suicide would change. Today, if somebody is threatening
to jump off London Bridge, we send a policeman up to try to coax
him down. The logic, if we accept assisted suicide, would be to
say that he means to do it, he wants to do it, so we will send
a policeman up to give him a push and help him.
Q187 Lord Taverne: Do you not think
that it is rather remarkable that after many years' experience,
far from decreasing trust in doctors, trust in doctors in The
Netherlands is much higher than anywhere else?
Professor Johnson: I think Holland is a very
unusual place in many ways. Belgium is not nearly so consistent.
I was talking to someone who runs a special neurology unit in
Leuven, for people with severe neurological disease and after
their law was passed, two people who came in asked about euthanasia..
Ten said "When you see me, are you going to liquidate me?"
That was a real fear coming from patients, who did not trust their
doctors. If you start with a very strong trust in doctors, then
it may stay there if it is done well. If you are starting from
not so great a trust, I think there is a very good chance that
that trust will diminish.
Mrs Bowman: I would like to make a point on
that. I have been to Holland a number of times and the official
figures there show that about a third of the patients who are
given euthanasia do not ask for it and have never brought it up.
When I was there I was also told of older people—when you
talk about trust in doctors—who went over the border to
Germany because they were frightened of going into hospital to
be euthanatised. I met one doctor there who told me about patients
who are frightened to go into hospital because of euthanasia.
He talked one of his patients into going in and assured her that
she would be in his care. Apparently on the Saturday she was quite
happy in her bed. He was not in on the Sunday and, when he went
in on the Monday, there was somebody else in her bed. She had
been given euthanasia during his absence.
Q188 Lord Taverne: One hears a lot
of anecdotal evidence but in the end one has to look at what this
picture shows as a whole. Is it not surprising—if what you
say is true—that again another very careful study done in
the year 2000 shows that non-voluntary euthanasia was far more
common in other countries than it was in The Netherlands? There
was no country in Europe in which it was found that there was
a lower rate of involuntary euthanasia than The Netherlands. For
example, in Australia, New Zealand and a number of other countries
there is a much higher incidence of non-voluntary euthanasia than
where they have a euthanasia law.
Mrs Bowman: I believe you have also referred
to a recent study, a very careful study, which claimed that there
were 20,000 cases of euthanasia in this country at present and
referred to the fact that a lot of these were being conducted
in hospices.
Q189 Lord Taverne: There are two
particular studies which I can give you the details of, one relating
to The Netherlands and the question of the trust in doctors, and
there are several studies about the incidence of non-voluntary
euthanasia.
Mrs Bowman: Who conducted these studies?
Q190 Lord Taverne: There was one
done in 2000 by Mr Deliens, another one in 1997 by Mr Couse, another
by Mitchell and Owens in 2003, another one by Mr Van Der Hyde
in 2003. All these are very carefully conducted studies and the
evidence from them is very compelling.
Mrs Bowman: All pro-euthanasia people.
Q191 Baroness Jay of Paddington:
I think it has been very helpful to hear about the progression
in palliative care and in hospice care and I think that is something
which would be very difficult for anyone to say that it was not
an advantage to all members of society. I wonder, though, if the
members of the panel—particularly the medical members of
the panel—would agree with the statement by the Royal College
of Physicians (whom we will be hearing from this afternoon) who
said in their written evidence that they thought that this Bill
was a matter for society as a whole to look at, in the sense that
it was not simply something which should be looked at purely from
a medical point of view.
Professor Johnson: My evidence was particularly
from the medical point of view and I agree that it involves wider
society; but I am also saying, why should it be the doctors—particularly
those who are caring for the patient—who are the ones that
should be involved in this? I think there is a strong case for
it not to be doctors involved in this at all.
Q192 Baroness Jay of Paddington:
Are you suggesting that it is not the principle, then, that you
find objectionable in the kind of circumstances that we have been
hearing about but more the method and the practitioners?
Professor Johnson: There are two things. One
is society having the right to do this. I think the College of
Physicians was saying that they were not going to make the decision
about it—and they will discuss this further with you this
afternoon. But I think the real issue is: should society give
to any group—as I said in my opening statement—or
any professional this really awesome right to take people's lives.
Should it go to lawyers? Should it go to any group? Why should
society decide to do this and then give it to a group to do? Again
we come back to this autonomy that Lord Joffe has mentioned. I
do think there are situations where a few peoples' autonomy has
to be overridden for the sake of the good of many. There are many
examples that you and other colleagues will be aware of, decisions
we have taken in the health service. Take the issue of antibiotic
resistance, where we said we would not agree to people's requests
for antibiotics when they come in with sore throats and colds,
because we would produce resistant organisms which might have
quite a serious effect on people further down the line. That is
a similar sort of creeping effect, which we have to prevent despite
there being some hard cases at present; we hope there will not
be many in the future as things improve. We still have to say
that we cannot give overriding power to somebody's autonomy: society
cannot do that. We have to limit autonomy in all walks of life
for the benefit of the whole of the population.
Q193 Baroness Jay of Paddington:
I am sorry to quote from other evidence, but we had an interesting
piece of evidence from one of our most prominent moral philosophers
who can put it much better than I can, saying that: "I do
not believe that individual autonomy is of the highest moral value
and it should often be postponed to another higher value, such
as consideration of the common good if these are in conflict.
However, in the case of a patient who is and knows that she is
terminally ill and who would quite deliberately end her own life
if she had the means or physical competence to do so, then it
seems to me there are no seriously conflicting values."
Professor Johnson: There may not be in that
one instance but the on-going effect of this happening is what
affects the whole attitude of society.
Q194 Baroness Jay of Paddington:
Yes, but if you agree with the Royal College of Physicians that
this is a matter for society . . .
Professor Johnson: I do not agree with that.
In a sense, doctors have to be involved. I think they have rather
washed their hands of the situation by saying that, because doctors
should have a view on this.
Bishop of St Albans: I wonder if I might
make a statement and then ask a couple of questions. The statement
is that, when I was a parish priest, I had the privilege of also
being a part-time chaplain of a hospice. Although it is a huge
privilege to be a bishop—as one might imagine—the
privilege of being a hospice chaplain is beyond description, because
I have spent huge numbers of hours sitting at the bedsides and
with patients as they died.
Chairman: Is it not possible for a bishop
to continue that role?
Bishop of St Albans: Yes, indeed, I do.
Chairman: I am sorry to interrupt your
question
Q195 Bishop of St Albans: It may
not happen north of the border but it certainly happens in the
south. I would like to ask two questions following that statement.
The first question is, would you not think it necessary and desirable
that members of this Select Committee should not only visit places
such as Oregon, Belgium and Holland, but they should also spend
equal amounts of time in palliative care units and hospices to
see for ourselves the work that is currently done? My second question
relates to that: right at the very heart of this is a philosophical
question about the nature of personal autonomy and therefore the
nature of human worth and value. My own experience in hospices—which
echoes what Professor Maughan has said—is that my exercise
of personal autonomy is not as significant in my view as that
moment when I have to place myself in the hands of others and
then discover not only my autonomy enhanced but my understanding
of myself and society enhanced. In other words, I am not an island
to myself. Would you be willing to comment on both of those questions
and statements, please?
Mrs Curtis-Thomas: If I could just make a short
observation on that, I think that when people enter or have to
endure a most appalling condition, one of the great things is
when they do actually find the response to society to that condition.
In many cases it is absolutely overwhelming. I have to say, after
five years of my mother's life where she shared a hospice with
many people in a permanently vegetative state or an equally debilitated
state, was that it was the best time because there was unrequited
love, a wealth of services that you could not possibly imagine
and undiluted care. I think that is possible, and I would clearly
want to see far more of that available to all. I think generally
there is a consensus of opinion, certainly the pro-life groups,
that we are not advertising that sufficiently, that we have failed
to block the pro-euthanasia group and their rhetoric with counter
rhetoric which we know to be the truth.
Professor Maughan: I think there are patients
without number who go through a terminal illness who actually
value that time very significantly. I can quote you many examples
of that. If I could just expand on this slightly, it relates back
to why so many people want euthanasia. A healthy person looks
at somebody over there in a hospice bed or in a sick bed. They
may feel—and it is a very natural feeling—"I
don't want to be there and, if I were there, I would be better
off dead". That is a very easy reaction for people in the
community, particularly fit and healthy people in our society,
to feel. That feeds into the high numbers that have reported supporting
euthanasia. But, when you actually walk alongside people who are
walking this road and as they do experience a gradual step-wise
diminution in their abilities and they accommodate to those, the
human spirit responds to that and the relationships and the issues
that flow out of that are immensely valuable; and even as you
come to the last days of life—and that is what you are talking
about—some of the most amazing moments and relationships
and the ability to say words are the most important things. Those
things cannot be quantified, and they are very precious.
Professor Johnson: You talk about people seeing
no value in themselves. But, of course, as I mentioned about relatives,
they are valuable to other people and for them to be able to take
a decision without the relatives being involved is really a very
difficult thing when relationships are looked at.
Q196 Lord Patel: I would like to
explore a couple of things. One is related to the comment about
assisted dying adversely affecting the development of palliative
care in this country and that the situation in The Netherlands
and Oregon is very different from that in the UK. Of course, we
all accept that development of palliative care to the highest
standard is very important. Why do you say that in this country
it is different and this Bill would hinder it?
Professor Johnson: I do not know Oregon. In
Holland, of course, there was very little palliative care at all.
They were right behind in the development of hospice and palliative
care.
Q197 Lord Patel: That is contrary
to the evidence we have heard.
Professor Johnson: No, I do not think so.
Q198 Baroness Jay of Paddington:
From something I read this morning, the evidence from Oregon from
the hospice societies there is that the majority of people who
not only ask for euthanasia but have euthanasia have been in hospice
care.
Mrs Bowman: Could I bring in a point here? Twenty-five
per cent of them have opted for euthanasia because of pain. What
kind of hospice care is that? Thirty-three per cent have opted
for euthanasia because they felt they were a burden on their families.
What kind of a society are you breeding there? In Holland—I
have been to Holland a number of times—on one occasion I
visited a hospice and they had a crowd of people outside marching
up and down from the Euthanasia lobby with banners declaring that
they were denying people the right to die. The hospice movement
in Holland has not developed anywhere near the hospice care in
this country.
Professor Maughan: To answer your question about
whether this would undermine palliative care research and development,
I think at the moment going into a career in palliative care is
very much a vocational thing. It is very much a thing of the spirit
of the individual, and there is tremendous commitment to stand
by patients, to walk with them and to support them. Of course,
we all learn and often we learn most from our hardest cases. I
think it would affect palliative care by undermining the views
of the people who are going into palliative care, maybe by affecting
recruitment. I think it would undermine palliative medicine because
of that desire to improve the situation and to really grapple
with these difficult cases. I am not saying that hard cases should
be the subjects of research but we do learn from the hardest cases,
and that is the way things improve.
Q199 Lord Patel: Can I put to you
another point that Lord Taverne referred to, which is the trust
in doctors and the evidence that he quoted that trust in doctors
in The Netherlands is quite high. I do not think you meant to
suggest that the trust in doctors in the United Kingdom was not
high, because the evidence suggests that of all professions the
public trust doctors most. Why do you think this Bill or assisted
dying, if it were legalised, would undermine that trust?
Professor Johnson: Yes, doctors are trusted
more than most but there have been a lot of high profile cases
and I think that has actually shaken, to quite a large extent,
the trust in doctors because of the way the media have reported
these things. A lot of the trouble is that we get our information
from the media about all this. I think there would still be this
doubt about what the doctor is really going to be doing. Doctors
will see assisted dying after a time, for the difficult cases
that Professor Maughan referred to, as a relief, a way out, also
for the doctor. We lose sleep over patients, we look after them
and we know what caring can be like. If this becomes an option,
there is going to be the temptation to say, "I need not try
that hard; I need not go that far;" but, I think that in
this country, at the present time, the trust in doctors is at
the lowest it has ever been since I started practice.
Professor Maughan: One of the issues about the
data from The Netherlands and these thousand patients who have
not given explicit consent is that there has been a move right
from the beginning—it remains stable, I recognise that—that
the patients who request euthanasia train the doctors in a certain
way, and then the doctors say "here is another patient like
them", and they make the decision to go ahead with the euthanasia
because of the condition of the patient rather than because of
the request of the patient. That is what feeds into some of these
anxieties about patients' lack of trust, I think.
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