Examination of Witnesses (Questions 240
THURSDAY 14 OCTOBER 2004
and DR IVAN
Q240 Lord Joffe: Professor Saunders,
I have mentioned to you this article
on pain and palliative care, and it relates to section 15 of our
Bill, which deals with pain relief. In this article, if I may
read part of the relevant extract, it says, "In a national
survey of hospital patients it was found that, of the patients
who suffered pain, 33 per cent were in pain all or most of the
time and 87 per cent had severe or moderate pain. From a palliative
care perspective, moderate to severe pain has been identified
as a major symptom in 50 per cent of seriously ill patients who
are conscious during their last three days of life. Even patients
who are able to talk with their doctors about their pain and suffering
did not necessarily have optimal or even satisfactory pain relief
at the end of life". Do you think, if that is the position
as you see it in the Royal College of Physicians in 2000, that
that does not make the case for section 15?
Professor Saunders: I do not think there is
any particular problem with section 15 in your Bill, Lord Joffe.
It seems to me that there is nothing in section 15 that is not
already available to patients. I see section 15 as entirely superfluous.
Section 15 says that the patient suffering from a terminal illness
shall be entitled to request and receive such medication as is
necessary to keep him from pain and distress as far as possible.
I think that is already entirely possible under the law. I simply
do not see the necessity for this clause within the Bill itself.
The section that you quote does in fact highlight very vividly
the deficiencies in training in palliative care in the UK at the
moment. It highlights, as I think that article does earlier on,
the omission of palliative care in the major textbooks on medicine.
It highlights the need for better training both in the techniques
of pain relief per se, and also in the very difficult communication
issues that we have in a multicultural society, where views on
death and dying are so very varied. I would be the first to admit
that I do not think I am fully competent myself. I think it is
very difficult, and there are huge educational issues in there;
and I think I can say that as a College we feel very strongly
about the need for better education, better standards.
Q241 Lord Joffe: Could I just put
two questions to Professor Tallis? Could you just give us a bit
of background about the College and its membership?
Professor Tallis: It has got approximately 20,000
fellows, and members and it is the fellows who have voting rights.
It is governed by a Council which consists of about 30 individuals,
most of whom are clinicians, and includes senior officers of the
College. The vast majority of the College fellows are hospital
doctors or senior clinicians. It represents quite a significant
swathe of UK medicine. There is an under-representation of general
practitioners, who have their own college, but there is a significant
number of general practitioners within the Royal College of Physicians.
Q242 Lord Joffe: To that would be
added the significant number of members of the other royal colleges
which have come through via the academy?
Professor Tallis: Yes.
Q243 Lord Joffe: The other question
I wanted to ask you relates to the point that was raised by Dr
Cox, but I would be very interested to have the views of all the
witnesses, and is on the question of the difficulty of predicting
life spans covered by the "terminal illness" definition
that we have over here. Perhaps I should read it out and ask for
your comments as to the feasibility of applying it. I have spoken
to a number of medical consultants and oncologists, who say that
there are very real difficulties with many diseases in predicting
life spans but that particularly with cancer, which is the main
killer in this country at the moment, it is possible to form a
reasonably reliable (though not perfect) prediction, particularly
at the time when curative treatment has ceased. Are you familiar
with the definition or should I read it out?
Dr Cox: Perhaps you would read it out.
Q244 Lord Joffe: It says, "Terminal
illness' means an illness which in the opinion of the consulting
physician is inevitably progressive, the effects of which cannot
be addressed by treatment, although treatment may be successful
in relieving symptoms temporarily, and which will be likely to
result in the patient's death within a few months at most".
Dr Cox: We would accept that as a good definition
of terminality. The difficulty arises in perhaps the last phrase
of that, which indicates that the patient will die within a few
months. Unfortunately, all of us as physicians have been in the
position where we have predicted a death for a patient. Two years
later they have come banging on our door and said, "Here
I am, doctor. I am still alive. Things have not gone the way you
expected". Similarly, you can predict to a patient and explain
to a patient that they are likely to die within a few months,
and in some senses sometimes that takes away hope and they have
gone downhill a lot more quickly. Your definition seems to be
the best that we have at the moment. What we were trying to highlight
is that sometimes it is a little more difficult in practicalities
than that definition gives credit for.
Professor Tallis: The worry behind this, of
course, is that you might be wrong, and seriously wrong. Of course,
medicine is a probabilistic art. It is never absolute and 100
per cent and in making all sorts of decisions, whether it a decision
to do a potentially dangerous operation or withdraw treatment
or whatever, it depends on assessment of probabilities. I think
this Bill should stimulate one to try and get a better grasp of
these probabilities and indeed to make the best use of experience
from elsewhere. How often in The Netherlands, Oregon and so on,
have people found evidence that they might have been seriously
wrong; that somebody has been considered as a candidate for assisted
dying who has then defied expectation. In most cases the vast
majority of prognoses are right but there will always be situations
where the diagnosis is wrong. That is an aspect of medicine as
a whole and it inevitably is reflected in this particular issue.
It places a huge burden of requirement on as much information
as possible and making sure our ability to prognosticate continues
Professor Saunders: Can I add a footnote to
that, Lord Joffe? First of all I would like to correct you on
a factual issue. Cancer is not the main cause of death in the
UK. I cannot quote the exact figure, I am no epidemiologist. But
I would guess that it must be around 20 or 30 per cent of deaths.
Cardiovascular disease is far more common. And, of course, there
is a large burden of chronic disease to which this Bill potentially
applies in particular, chronic lung disease, chronic bronchitis,
emphysema, which is very distressing throughout its final phases
and a very large burden of chronic congestive heart failure, which
causes enormous suffering. If the mental picture behind this Bill
is one of cancer, some re-thinking may need to be done. I personally
think that prognosticating in those situations is fraught with
the most extreme difficulties. I can think of many patients that
I have expected to live two or three months with chronic heart
failure or with chronic lung disease and I have been spectacularly
wrong. You are correct in saying that prognostication is probably
somewhat more accurate in advanced cancer but, of course, it begs
the question as to how advanced. Certainly prognosticating may
be better when somebody is within the last two or three weeks
of their life. I have to say that, when they are six or eight
months away from it, it is actually pretty desperately hopeless
as an accurate factor. Although I accept what my colleague says
about medicine being probabilistic, the degrees of standard deviation
from the prediction do get very large indeed when you are moving
up to the six, seven, eight month mark, which I think the Bill
does imply. I think there is a very important practical issue
there in the Bill, which a number of members of the College have
expressed anxieties about.
Q245 Baroness Thomas of Walliswood:
We have had a lot of discussion about the patient's autonomy versus
the common good. In real lifeand I am asking a question,
although I may sound as though I am making a statementis
it not the case that what goes on is a relationship between the
doctor and the patient which is a form of negotiation? Am I right
in thinking that the terms of that negotiation are changing in
the modern world? The patient is becoming more demandingif
you like, less obedient, less willing always to accept what the
doctor says is correct; and there is a lot of evidence of that
from people who are told one thing by their doctor and then go
away and research it on the internet and come up with a totally
different approach to the disease. That sort of attitude would
have been unheard of 15 years ago, certainly 20 years ago. There
is this negotiation which is going on. In effect, when you come
to a decision which, heaven knows, is going to be a difficult
one, about assisting a patient to commit suicide, which is what
this Bill is about, that will be the result of some kind of agreement,
will it not, between the patient and the doctor? Looking at it
in a human kind of way, how would any of you tackle that sort
of negotiation? The heart of this Bill is something to do with
how these decisions are arrived at, when I guess that these rather
grand considerations of ethics or the common good actually will
not be the subject of discussion at all; it will be something
much different from that. How do you safeguard the activity, which
is really what I think the College of Physicians was talking about
not as to whether it is virtually moral or not but how you would
actually handle it?
Professor Tallis: First of all, your view of
the general social trend is absolutely right: the willingness
to subordinate one's autonomy to the common good seems to be attenuated
with time. That is an epidemiologically ungrounded observation
but one gets the feeling it is true. That is certainly the context
and I think it probably explains a lot about why this issue has
come to the fore. It is a reflection of general social trends.
The issue of how one arrives at a decision seems to me to be that,
when principles fail, one has to resort to conversation, and I
am a greater believer that within the interstices of principles
one has to have a conversation on ethics. The decision and the
agreement as to what the patient wants, the sense of what the
patient wants, emerge during this very long conversation. It will
not be a one-off conversation. It will not necessarily begin at
the time of the patient seeking assisted dying or even at a time
when the patient is perilously ill. It may well begin a long time
before, and that is why it is very important that it should be
part of a longer relationship with the physician. I would see
this kind of decision emerging out of a larger conversation, encompassing
all end-of-life decision-making and indeed encompassing things
far upstream in the management of an illness. It would not just
be a one-off visit and a decision. It would be something that
is, as I say, part of a much longer conversation between a physician
who cares and a patient who is cared for.
Professor Saunders: Can I add two footnotes
to that? One is the enormous practical one, which presumably is
the problem landing on Lord Joffe's desk, if I may say so. In
my understanding at the moment, the issues surrounding conscientious
objection in the Bill have been temporarily suspended, or a line
has been put through them, while new arrangements are in place.
But access to the provisions of the Bill, if enacted, will of
course depend in the first instance on being under the care of
a doctor who is actually in sympathy with that Bill and is prepared
to discuss it with you. That is necessarily the case, so that
if you have a patient with a long-standing chronic lung disease
who has a long term relationship with a chest physician, if you
are a nephrologist who has a patient with long-standing chronic
renal failure or an endocrinologist who has a patient with long-standing
hormonal complications, etc, etc, there will be a need to say
that, if the patient has a right under the law to assisted suicide,
how can that right be realised if their long term doctor is actually
not sympathetic to their request? That I see at the moment as
simply a practical issue. I cannot express an opinion because
as far as I can see the proposal has not been redrafted and we
would want to look at any proposal that is made in the redrafting.
Q246 Baroness Thomas of Walliswood:
In the case of abortion, which is an equally divisive issue, there
certainly are doctors who will say to a woman seeking abortion,
"I am not going to counsel you on this matter because I do
not believe in it, but I will refer you to somebody else who will
be able to talk to you about that because he or she has different
views than mine". Do you not think that might be one of the
things that might be a solution? You are shaking your head.
Professor Saunders: No, I do not, Baroness Thomas,
because I do not actually see the two situations as being in parallel.
I can only give a personal answer rather than a College one. The
reason I do not see them in parallel is that the one thing we
can all agree on is that, if I give barbiturates and curare to
a competent adult, I am killing that person. We can agree that;
I do not think anyone can contest that that is killing somebody.
It is killing a human person. I think even the most vocal opponent
of abortion, despite the rhetoric, which at times is extremely
powerful with inappropriate violence in certain countries of the
world, I do not think people in their heart of hearts actually
do think that destroying a six-week foetus is truly akin to murder.
I know that many people say it is but I must say I doubt whether
they truly believe that. In the case of assisted dying to say,
"I am not going to murder this patient but I will arrange
for another murderer to do so" strikes me as a very strange
position to be in.
Q247 Baroness Thomas of Walliswood:
With respect, I think that is way beyond what the Bill says. The
Bill exempts a doctor from legal penalty if he conducts himself
in the way that the Bill determines. It is a very narrowly drawn
Professor Saunders: Indeed it is.
Q248 Baroness Thomas of Walliswood:
I am sorry to protest but I thought that was a little bit over
Dr Cox: If I might come in here, going back
to your original contention that the relationship between doctors
and patients has changed over recent years, that would certainly
be my experience and that of a lot of other general practitioners.
With respect, I think what you were pertaining to was an ideal
relationship perhaps between the general practitioner and the
patient which is of long standing, which is one of trust, where
the patient and the doctor had gone through a lot of different
things together. Unfortunately, some of the changes that have
taken place in our Health Service in the relationship between
doctors and patients of late do mean that there is more frequently
just a spurious relationship between the patient who comes to
see the doctor that is on duty that particular day or the doctor
that is only temporarily in the practice. And, again, I do not
wish to draw a distinction between social communities but it may
well be that some of our poorer communities may find that, though
they request assisted dying, they find it more difficult. We may
still end up with what does happen to a lot of patients who request
abortion at this stage, which is that they are referred to two
family planning doctors, and their own general practitioner would
not be able to assist in that. And that in a sense, with due respect
to what Professor Saunders said, becomes almost like death on
demand and we would not want that.
Q249 Lord McColl of Dulwich: I was
a little puzzled by Baroness Thomas's protest at what Professor
Saunders said. Would it be all right if he put it into Greek and
said "thanatised the patient" rather than used the Anglo-Saxon
word he used?
Professor Saunders: It was a little provocative
using the word, I suppose. Yes, with respect to Baroness Thomas,
I do not particularly understand her protest.
Q250 Chairman: We do not need to
resolve that. It is really the advice that you are able to give
us on the more practical andwhat shall I say?slightly
lower ethical matters that would be of particular value. How you
would describe the procedures in the Bill would be a matter on
which you might have different points of view. Could you help
me a little on this question of forecasting? As you say, medicine
is a probabilistic science and the test here is "likely to
die within a few months at most". It is the consulting rather
than the attending physician that may ultimately have to decide
this question. But, whichever of you wish to answer it, how would
you go about, in a particular case of a particular individual,
assessing how long that person has to live?
Professor Tallis: This kind of context demands
a very high level of diagnostic precision, higher obviously than
many other decisions because the decision is a very grave one.
However, we are talking about an individual who has often had
a very long-standing progressive illness whose manifestations
are very clear and who will have been fully worked up from the
clinical point of view.
Q251 Chairman: I think you have pointed
out that. I was laying that aside in your memorandum. It is possible
to have mistakes in diagnostics but I was assuming that there
was not a mistake in diagnosis at the beginning of the question,
that a correct diagnosis has been made, and I was wondering how
a physician or other specialist goes about assessing how long
that particular individual has yet to live.
Professor Tallis: It depends on the overall
statistics. I know that Baroness Finlay will know much more about
this in terms of the overall statistics of life expectancy of
somebody not with just a particular cancer but a particular cancer
in a particular stage of development or cardiac failure or whatever;
and, of course, there are outliers and there is quite a significant
variation. John is quite correct that there is a huge variation
in the case of something like cardiac failure. Whether there is
that huge variation in those people who are so parlously ill and
who have been probably worked up and all their symptoms have been
sorted out as far as is possible with modern medicine I think
is something that needs to be established. This is an empirical
issue and I think it would be very important to draw upon experience
from elsewhere. I am not in any way downplaying the difficulty
of making a precise prognosis in some cases but more saying that
one of the clinical requirements is that we should acquire as
much knowledge as possible to maximise the precision of prognostication.
Q252 Chairman: I was hoping that
you would be able to help us about how you go about it. I understand
that you gather as much information as you can about the general
knowledge of the particular condition in which the patient is
but, having done all that, how do you then assess the amount of
time over which that person still has life?
Professor Tallis: It is based on general experience
of those particular conditions at that particular stage of development;
but people are biologically variable, that is true. In many cases
where people do have unbearable suffering which cannot be alleviated
and so on, I guess they themselves will have made the decision
that they would take the risk of trading off a longer prognosis
perhaps than expected against continuing suffering.
Q253 Chairman: I think it is fairly
fundamental now that in any treatment or course of treatment on
which a doctor or physician is going to engage they must receive
the informed consent of the patient. I know there is a bit of
discussion about exactly what that involves, as there is about
most other consents in this area. What would you think would be
required in the way of discussing the need for informed consent
in this situation where you have someone who is being offered,
as a result of their own request, assistance to die?
Professor Tallis: Total honesty to say, "This
is what I think is going to happen but I have a certain level
of uncertainty about this". It seems to me fully informed
consent is unachievable in most situations because one is always
dealing with uncertainties, but if one hedges about one's prognostications
with a statement of their probability or certainty as far as one
knows, then I think it is very much for the patient to decide
whether they want to take that kind of risk. I imagine that is
how it would work out.
Q254 Chairman: Does the overall view
of the physician about the nature of human life have any part
in it or not?
Professor Tallis: I suspect it might well do.
I expect that without wishing to do so we often influence patients'
decisions by our own world view. I think it would be almost impossible
not to put something of oneself into the interaction of the patient,
but that is always there and, given that it is always there, it
Q255 Baroness Finlay of Llandaff:
You have outlined the burdens and difficulties and problems here.
One thing that I read in one of your pieces of evidence was the
need perhaps for prior notification rather than post-event notification.
I just wonder why you feel that doctors should do this given the
discrepancy that there is, the difficulties for doctors and so
on. Why not have a completely separate thanatology service outside
of medicine if that is what patients want? I would suggest to
you that it is fundamentally different from abortion in that you
have two livesthe life of the mother which is at risk by
the procedure, and that may require medical intervention and sometimes
intense medical intervention to save the mother's lifeand
therefore we are talking about two completely different things,
whereas here one person's life is going to be ended and there
is not somebody else's life that in the process of doing it is
jeopardised and would require medical intervention potentially
to resuscitate them. I fail to see why you have not been advocating
the view that society sets up a completely separate service.
Professor Tallis: This has come out of some
of the conversations we have had but it is very much about the
relationship between the patient and an individual who has been
involved in seeing them through. I know from experience internationally
that people see assisted dying as part of the whole end-of-life
care. It is one of many optionsterminal sedation, control
of symptoms and so onand to hand somebody over to somebody
else for this separate thing would be seen as a way of abandoning
Q256 Baroness Finlay of Llandaff:
So you are viewing it as a therapeutic option?
Professor Tallis: I am viewing it as a therapeutic
Q257 Baroness Finlay of Llandaff
: Because therapy has good intent in it. If it is not a therapeutic
option, then there is no good in it. You would not consider something
as a therapeutic option if there was no evidence of good in it.
So I wonder whether you see the therapeutic good in this as that
it needs to be administered by medicine itself?
Professor Tallis: I am aware that in a sense
I am going off message here by now acting as an advocate as opposed
to maintaining studied neutrality, and I am sure John may have
a view. To me it does seem to be a therapeutic option, as are
many other forms of treatment that may hasten people's deaths.
That is a personal view. For that reason I do feel it should be
regarded as part of the therapeutic alliance between the patient
and the doctor. I do see, without trivialising the phrase, that
it is part of a whole "package of care". This is not
our position from the College which, I hasten to add, is very
much that we are neutral as to the desirability of this being
Q258 Baroness Finlay of Llandaff:
If we took the past five years in your own clinical practice,
how often have you felt you would want to do what Professor Saunders
outlined, which is to go up to a patient and inject him or her
with barbiturates and curare because you felt that there was absolutely
no other therapeutic option available to you?
Professor Tallis: I have felt despair and I
have felt grief at some of the unbearable suffering some of my
patients have had, but I have never thought of this option because
it has never been an option that has crossed my mind. It has not
been an available option though one has often had a sense of defeat
at failing to deal adequately with a patient's appalling end-of-life
experiences. But I have never considered this option because I
am not somebody who would naturally think outside the law.
Q259 Baroness Finlay of Llandaff:
So what did you consider?
Professor Tallis: The patient continues to receive
1 Note by Lord Joffe: "The control of pain
in Palliative Care" John Saunders, Journal of Royal College
of Physicians Lond. Vol 34 No. 4 July/August 2000. Back