Examination of Witnesses (Questions 1920
- 1939)
TUESDAY 18 JANUARY 2005
DR DAVID
COLE, BARONESS
GREENGROSS MP, PROFESSOR
RAYMOND TALLIS,
DR GEORG
BOSSHARD, and DR
CAROLE DACOMBE
Q1920 Baroness Hayman: Dr Dacombe
and Dr Cole, you have both mentioned individual patients with
whom you have dealt over the years, a small number who had a persistent,
competent desire and who would have availed themselves of this
legislation. I wanted to put to you a couple of things that we
have received in evidence over the sessions and ask how they fit
with your experience. I will probably over-simplify so forgive
me. It has been put to us that patients who are in their last
six months of life and terminally ill, if they wish to, can die.
It has been put that they let go of life and that they can influence
the timing of their own death. It has been put to us that if they
do not there is almost something psychologically unresolved. These
patients could refuse food and water and end their own lives that
way. Sometimes they are in control of their own medication. I
think that is an example that Lord McColl has given in the past.
There is some shifting of responsibility going on here that represents
an uncertainty. If the certainty was there, these patients would
be able, whatever their disease, to take control of their own
destiny in death. They would let go of life. I wanted to ask you,
in your experience, whether that is a universal phenomenon that
you have seen or whether there are hard cases that would remain
despite that assertion or phenomenon, if you agree it exists.
Dr Dacombe: I acknowledge the comments that
you are making and I am aware of some of the previous evidence
that has been presented to you that has suggested that. Certainly
in my experience and in the experience of my colleagues within
palliative care whom I have spoken to about this, we are well
aware that there are individuals who particularly very close to
the end of their life, as in within a matter of days or perhaps
at the most one or two weeks, that we have all seen who have appeared
to be able to finally let go. That has to be some sort of mixture
of physical, psychological and spiritual decision making and action
on their part. They have been able to finally let go of life to
some extent at will. In other words, those who have finally made
it to a given anniversary or a given event and have then clearly
let go of their final will to keep living. That certainly is a
phenomenon that has been seen, reported and discussed at some
length within all areas of health care but within palliative care.
However, there have been other patients that I have encountered
who have expressed powerful desires for their life to end, who
have not necessarily been quite so clearly physically imminently
close to death, but would still come within the sphere of a Bill
such as this. They have clearly not been able to effect that process,
even though they have declared a powerful wish to do so. In particular
I can think of at least one person with whom I have been closely
involved in the last year who spoke about this at length and who
did, indeed, choose, as it were, to take to bed, to refuse food,
to refuse fluid (other than that to deal immediately with discomfort
from withdrawing from fluid), and he then subsequently took a
long time to die, because that was the natural process that they
had to follow. I am not convinced that all people can achieve
the psycho-spiritual connection with their inner being, if you
like, that allows for that letting go to be successful.
Dr Cole: I would not have a great deal to add
to that. I certainly agree that in many specialties in medicine
you see patients who decide to let go when they have reached a
certain point in time, whether it is an anniversary or a big family
event, and then they decide to "turn their face to the wall"—which
is a very real expression that is used; not a very nice expression—but
I would not otherwise have anything to add to what has been said.
Professor Tallis: In the correspondence we have
had as a result of an article from the Royal College of Physicians
last month, somebody wrote to me and suggested that the minimal
period of 14 days should be regarded as an existential pause,
and people should be positively encouraged very much to resolve
those kinds of possibly resolvable psychosocial issues. In other
words, that period should be used positively, and, it may be,
as a result of which, the person would not want to take advantage
of assisted dying. So there is still that opportunity, in the
gap between the patient, as it were, signing up for assisted dying
and its being implemented, in which precisely those issues could
be actively explored rather than hoping they would just float
to the surface.
Q1921 Lord Turnberg: I have a couple
of questions. I think Dr Cole talked about the difficulty of judging
when a patient's illness is terminal, and, on the six months'
suggestion that we are hooked on, I think you suggested that maybe
two months would be better. Is there anything particular about
the length of time? Should it be two months, three months, four
months?
Dr Cole: I think the prediction of prognosis
is more reliable at two months than it is at six months. I think
there is evidence to support that. The point comes when you can
sufficiently reliably predict how long a patient has to live.
I would suggest that this legislation, if it were passed, applied
to those patients for whom a reasonably reliable prognosis could
be given. You can argue the details of that, but in my practice
I would say it was within one or two months of death.
Q1922 Lord Turnberg: That leads on
to my second question. We have heard from yourselves and others
that the patients who may wish to take advantage of such a law
are controlling individuals who wish to keep control of their
own destiny and chose their own time of death. This leads us on
to the question of whether it also has to be in someone who is
suffering unbearably. Who is it that makes the judgment of unbearable
suffering in that sort of person? This is the area. Because it
may well be that the patient is not in pain, is not necessarily
suffering horrendous symptoms of the characteristic case you have
described, but really cannot bear the thought of continuing with
the idea that they have a terminal cancer.
Dr Cole: I think ultimately the patient should
make that decision. This is part of individual autonomy. That
decision will need to be supported by professional people and
witnessed by professional people.
Q1923 Lord Turnberg: Their support
would be from professional people, that this patient really does
have a terminal illness, not necessarily that they are suffering
unbearably.
Dr Cole: I think intractable distress or intractable
suffering is a subjective phenomenon. I think many have argued
that that is something that the patient himself or herself can
make a judgment about, but I think that professionals can appreciate
what the patient is saying to a greater or lesser extent and support
that.
Q1924 Lord Turnberg: That brings
us to the Swiss situation, because there it is not necessarily
someone who is terminally ill, it is someone who is unbearably
suffering at any stage.
Dr Bosshard: I would add that I think physicians
have no particular expertise for unbearable suffering.
Baroness Greengross: There is another bill going
through the House at the moment, the Mental Capacity Bill. We
were discussing this last week and a point was made, quite genuinely,
that if somebody makes a decision and they are mentally competent,
their autonomy must prevail. We may not like the decision, but
they are adults and capable of making the decision. We are talking
about mentally incompetent people here. In the end, self-pride
and dignity are also very important to us as adults, and they
do not go away as we get old or if we are dying. We cannot get
into the skin of a dying person: they have to know what is acceptable
to them, even if we do not always feel the same way as they do.
I think the whole difficulty of this Bill really is the responsibility
for that decision. That is what it is all about. I suppose I believe
in the very end that it must be a competent adult who is finally
responsible for the decision in this case. With all the safeguards
and all the expertise being available, it is that person in the
end whose view should prevail, because it is about the quality
of that person's life.
Professor Tallis: Could I pick up on a couple
of things. Of course the ultimate arbiter is the subjective experience
of the patient, but I do not think someone would be considered
for assisted dying if they did not have any objective pointers:
appalling pressure sores, incontinence, being bedfast, or uncontrolled
pain due to bony secondaries or whatever. Clearly, although the
decision that something is unbearable lies with the patient, it
has to have objective reasons. Then there is the issue of prognosis.
It is very important to tease out two components of prognosis,
it seems to me. One is the prognosis of how long you are going
to live and the other is the prognosis for the extent to which
you are going to recover from this unbearable situation. If, for
example, somebody actually might have lived a little bit longer
than you expected, that in itself is not an objection or refutation
of the prognosis one is making, because one is saying: "Is
this person ever going to get out of this unbearable situation?
Has everything been tried?—all the recommended care."
If the situation is unbearable and the prognosis is that it is
going to remain unbearable, then that surely is the absolutely
key issue. Clearly that will only happen, usually, within two
months of death, but it may be a little bit longer than that.
So I think it is very important not just to confine the notion
of prognosis to life expectancy but to expectancy of quality of
life: whether there is going to be an improvement or whether it
is going to remain in the condition that the patient has deemed
unbearable.
Q1925 Lord Turnberg: Should six months
be on the face of the Bill or 12 months?
Professor Tallis: It is always very difficult.
It always seems arbitrary, does it not? These are arbitrary decisions.
And, I guess, six months is not the sole criteria. There is a
whole pile of other things, all coming together. At the most six
months, but with many other features. Of course, people particularly
like David and Carole will have a much better idea, a feeling,
for how long somebody is going to live and would, I guess, be
rather unhappy if there was life within a year or whatever.
Dr Cole: My preference would be to say "usually
less than three months" rather than the six months.
Q1926 Lord Taverne: I would like
first to ask questions of Dr Dacombe. Some of the evidence we
have had has suggested that the Bill is not needed because palliative
care is the answer to people who are in the situation of unbearable
suffering. On the other hand, the overwhelming evidence—and
I hope I am not misrepresenting it—that we have had from
the Netherlands is that they see no conflict at all between palliative
care and euthanasia—or their particular form of euthanasia;
in fact, they feel that they are completely complementary. What
would be your view, from your experience? I know that Sally Greengross
has argued that it is easy to provide palliative care under the
Bill, but do you see any conflict between the palliative care
and the Bill? That is the first question. Related to that: in
the case of unbearable pain—and I know that in a lot of
these cases it is loss of control rather than unbearable pain
for people who ask for euthanasia—is it always true that
palliative care can mitigate unbearable pain and relieve it?
Dr Dacombe: If I may take the first point first.
I do not think myself there does have to be a direct conflict
between this type of legislation and palliative care, but I do
think there is a very great need for both those points, which
I myself raised in my introduction, to be looked at in parallel.
In other words, this Bill certainly should not be seen as the
answer to the problem that we have a deficit of care. Were people
to be seeking assisted dying because of a deficit in the care
that could be provided to them, that would be the most frightful
indictment on our society, would it not? So I think it is essential
that both those things are looked at together, but I do also believe—and
I am ready to recount the experiences to which I have already
alluded—that, whatever volume and level of palliative care
we do deliver, there will be some people for whom that is not
providing the answer to their difficulty, in that it is not actually
meeting their unbearable suffering. Therefore, though I may find
that very sad and I may find it, indeed, disappointing, as a palliative
care practitioner, I acknowledge that that problem exists and
I believe that it will continue to exist. That is why I believe
the two things ought to be looked at in parallel, and I do not
necessarily find a conflict there as long as both are being addressed.
In terms of the second point about unbearable pain, I would say
that the vast majority of difficult-to-manage pain can be eased
to a very great extent by one or a collection of measures that
can be applied under the umbrella of specialist palliative care.
There is undoubtedly a very small number of patients who are still
left with, whatever measures you persist with, some degree of
pain. Clearly part of what we are aiming to do in palliative care
is to relieve all suffering, and there are many components of
pain—and I am sure that is a concept that has been put to
you before now—and it may be that some small number of those
components are left in place but by easing a great many of them
you relieve the total distress to a very considerable extent.
But there are no panaceas for all forms of pain.
Q1927 Lord Taverne: My second question
is to Professor Tallis. You have given powerful reasons why you
are in favour of the Bill. Originally you were opposed to the
Bill. You have given one reason why you have changed your mind:
looking at the evidence, you do not think now it would weaken
the relationship, the trust, between doctor and patient. Why were
you otherwise originally against the Bill? Apart from that, what
has made you change your mind?
Professor Tallis: Originally, it was the Royal
College's response—although it was a response which I was
entirely behind. The Bill itself has changed in some very important
respects, and I think that was the first thing. There are more
diagnostic safeguards put in. The change in the Bill to me was
very important. The other is that my original response was not
rooted in an understanding of what was going on elsewhere and
I think my response contained empirical comments that did not
stand up in the light of international experience, not just in
relation to the potential threat, as I saw it, to the development
of palliative care, but also the myths that perhaps one subscribed
to that all patients in the appropriate palliative care setting
could be managed to such a point that their suffering was bearable.
I was very impressed by the Oregon data, which showed that the
vast majority of people who sought assistance in dying actually
did so in the context of hospice care, in a state which I think
is regarded as the second best state in terms of palliative care
throughout the States. For those sorts of reasons, I felt I could
support the bill—partly on the basis of change in the Bill,
partly on a better knowledge of what is going on elsewhere.
Q1928 Chairman: I would like to ask
Dr Dacombe a little bit about this relationship between palliative
care and this Bill. Is it the case that a good deal of suffering
can be relieved by appropriate palliative care?
Dr Dacombe: Yes, absolutely.
Q1929 Chairman: The question of whether
a particular patient has unbearable suffering, in the sense that
it cannot be alleviated, will depend to a considerable extent
on the amount of palliative care service that is available to
that particular individual.
Dr Dacombe: Absolutely. Both at the generalist
and the specialist level.
Q1930 Chairman: I understood that
to be the basis on which you said it would be very important,
if a bill of this kind were to be made law, that patients would
have available to them the best level of palliative care that
could be given across the country.
Dr Dacombe: Absolutely.
Q1931 Chairman: Do you get satisfaction
out of being a palliative care specialist?
Dr Dacombe: Yes.
Q1932 Chairman: What does that arise
from?
Dr Dacombe: I think it arises from working in
a speciality where team work is so important; where sharing problems
with multiple other disciplines is so important. It comes from
working in an area where, generally speaking, you probably have
more time to give to patients and where the entire focus of what
you are doing is around trying to meet the individual needs of
an individual patient in their individual circumstances alongside
all those others who are important in their life. I am very comfortable,
as a doctor, that I have no sense of failure as a doctor in working
with patients who have incurable disease. Clearly there could
be people working in medicine who would like to believe that they
can "cure" their patients—although in truth we
know that a great many people in our population are living with
some form of chronic illness that cannot be cured. I do not have
any sense of failure in the sense that I have to work with patients
who have incurable, progressive disease who will clearly die from
that; rather, I actually appreciate the successes along the way
that can be achieved by meeting their individual needs as far
as is possible and achieving the successes that they would define
for themselves in their remaining life.
Q1933 Chairman: When pain is relieved,
what sort of quality of life does a person who may not have long
to live have (notwithstanding the pain has been relieved to a
certain extent)?
Dr Dacombe: Quality of life is a very difficult
and complex subject, as I am sure has been said to you by many
people before. As I am sure you are aware, quality of life cannot
be determined only by physical symptom control. I think we have
to recognise that, depending on your faith background and your
cultural background, you may not seek loss of pain as a prime
objective in dealing with your incurable disease. There are cultures
where actually dealing with pain yourself and suffering through
it is part of the way you achieve what you wish to achieve yourself
spiritually in the afterlife. I think that is an important point
to make because we do tend to focus on pain control as something
that is all-important, and it may be all-important for the majority
of Christians or those of certain faith backgrounds, but that
does not apply across the board. But quality of life does relate
to physical symptom control. Clearly, people do not wish to be
in pain, they do not wish to be feeling sick, they do not wish
to have symptoms that are actually interrupting their ability
to think and to enjoy their surroundings. On the other hand, patients
can have other physical symptoms which it is not possible to relieve.
If they have intractable weight loss and they are developing a
great deal of physical weakness, those are not necessarily things
which it is possible to overcome, and they may perceive that that
does burden them in a way that they would perceive was unbearable
suffering. And clearly it is not my right to define their suffering
for them.
Q1934 Chairman: We have heard about
the system in Switzerland from your colleague. That is not exactly
the same as what is proposed in this Bill. Have you any view about
the merits of the different possibilities in this area of assisted
dying; namely, the kind of situation in which the doctor may provide
the necessary means with the kind of additions to which Dr Bosshard
has referred, and the other type of legislation in which the doctor
may positively take action directly to bring the patient's life
to an end? Do you follow me?
Dr Dacombe: I think I do. I think there are
some aspects of what you are alluding to which it is not in any
way my place to comment on here today, in the capacity that I
believe I am here. I am very well aware that you have explored
yourselves at some length the systems operating in the Netherlands
and Oregon, and obviously we have George here to answer questions
directly about Switzerland. I think the comparisons between those
systems and what might be perceived as the good or the evil in
any of them actually rests with yourselves in making those comparisons.
Q1935 Chairman: I am thinking from
your own point of view.
Dr Dacombe: From my own point of view, I think
the safeguards I would want to see in any system, in terms of
what would be expected of a doctor involved in the care of the
patient, do actually exist in this Bill, inasmuch as I do believe
it is very important, whether you are talking about a general
physician or a palliative care physician, that it should be possible
for you to have a conscientious objection to being involved in
the process. I think it should be possible for people to define
for themselves within the limits of their own conscience whether
or not they feel a need to do anything, whether they feel able
only to provide a prescription which gives the patient the means
by which they can choose to end their own life, or whether they
would be prepared actually to carry out an act or assist the patient
in carrying out an act to end their life.
Q1936 Chairman: I would like to ask
Dr Bosshard about Switzerland and the methods that are used there.
What is the general result, in the way of the process of actually
dying, as a result of one of the actions taken under the Swiss
law? What happens to the patient in the situation where this type
of treatment is administered? How long does it take generally
for the patient to die and what is the nature of the death?
Dr Bosshard: Usually the patient has to drink
a cup of 10g solution of barbiturate. Then he will be unconscious
within a few minutes and he will die within the range of between
10 minutes and a few hours. In some cases it can take several
hours; usually the average might be around one hour; but it is
important for the patient before—and in particular for the
relatives—to be aware of the fact that it can last hours.
But we did not come close in one single case to where the patient
actually would not have died at all.
Q1937 Chairman: So far as this treatment
is concerned, you said that for a patient who has very little
in the way of physical ability left there are means by which the
minimum physical action on his or her part is required.
Dr Bosshard: Exactly.
Q1938 Chairman: But always, at the
very minimum, there is some so far as Switzerland is concerned.
Dr Bosshard: Yes.
Q1939 Lord Joffe: Dr Dacombe, if
a patient says that he or she does not want palliative care, they
have made up their mind that they have had enough and want to
die, would you see that as a bar to them being given the option
to ask for assistance to die?
Dr Dacombe: You are talking about a patient
actually turning down, if you like, palliative care.
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