Examination of Witnesses (Questions 1960
- 1970)
TUESDAY 18 JANUARY 2005
DR DAVID
COLE, BARONESS
GREENGROSS MP, PROFESSOR
RAYMOND TALLIS,
DR GEORG
BOSSHARD, and DR
CAROLE DACOMBE
Q1960 Bishop of St Albans: Of course,
I would assume that any of us around this table would jump in
or throw the life belt. We would do our utmost to save somebody
in that situation. Which raises the question in my mind—and
it is a totally open question, therefore—when somebody has
exercised, in that case, as they have, their own personal autonomy,
what is it about us that says there are other higher values—and
I am not talking in a religious sense—values besides autonomy,
to which we need to give attention? Would it be, for instance,
unreconstructed paternalism to leap in and save him? I venture
to suggest no. That is what any of us would morally wish to do.
Professor Tallis: In different situations there
are different principles that come to the fore. It seems to me
that in this particular principle of the person jumping over the
bridge it is totally appropriate and the principle of beneficence
would rise above the principle of autonomy until you sort through
what is going on. In the situation of a person who is terminally
ill and has unbearable suffering, then I think autonomy starts
to push into the front and some principled concept of beneficence
which overrides what they want starts falling behind. All these
principles are in competition and they are appropriate ahead or
behind in different contexts.
Bishop of St Albans: I was only trying to establish
exactly that. That is exactly the problem, is it not?
Q1961 Lord Joffe: To what extent
do you feel that you and your team can form a judgment on competence?
Dr Dacombe: Competence is a very large area.
What we are essentially talking about here, and what I personally
would feel comfortable to talk about, is the fact that an individual's
capacity for decision-making, I believe, is "judgeable"
at a moment in time. There are structures, check-lists, if you
like, that you can use to help form that judgment, and that is
to do with issues such as assessing whether a patient can hear
information, take it on board, process it, repeat it and come
out with a decision that clearly takes into account their circumstances
and the information they have been given. That is a process that
on occasions we do follow in quite a formal manner with patients.
If you are uncertain about that, then clearly you would want to
seek advice and support from colleagues, at consultant psychiatrist
or consultant clinical psychologist level, to add to your assessment.
In other words, if you have doubts, you would want to seek further
support. I believe that at a moment in time it is possible. There
is a very important issue to bear in mind which has been alluded
to by Dr Cole, which is that clearly disease processes can change
and the medication that they are on can change. Dr Cole referred
previously to opioid-analgesia, for instance, the dose of which
can obviously change, and, depending on the rate of change of
that dose, it could clearly be affecting a patient's ability to
be fully clear at any moment in time. The patient's capacity for
decision-making can change over a period of time, but at a moment
in time I believe it is possible for it to be assessed. Any of
us could be doubtful after our own assessment, and we might clearly
then want to refer to colleagues for assistance and back-up.
Q1962 Lord Joffe: The patients to
whom you referred with whom you have had these discussions about
wishing to die, would you feel that they were competent?
Dr Dacombe: I would. Certainly the discussions
to which I have referred in my presentation have been discussions
with patients whom I fully believed were competent.
Q1963 Baroness Jay of Paddington:
I realise it is late in the session but I really wanted to raise
with you two questions which have come out of this extremely helpful
discussion about the concepts you have used this morning, which
I personally have found extremely helpful. One is this concept
of "intractable distress" as not opposed to but a differentiation
from the one which is in the Bill about "unbearable suffering".
Intractable distress conveys to me, in the way that you have conveyed
it, a great deal. The other was on the points which Professor
Tallis raised about the "prognosis for improvement"—again,
a broader concept than something which limited a definition of
availability for this kind of end-of-life decision to a period
of time. I wonder if I could get your reactions to that concept
as well. Beyond that, there is the more mundane issue, on which
perhaps Dr Dacombe or Baroness Greengross may be the most appropriate
to reflect, which is the whole question about how the health service
and the social services, as I understand it—particularly
in relation to hospice funding—do have concepts of terminal
disease in the availability of funding, which they use precisely
to define the way in which they can support people who are already
in hospice care or, indeed, have a definition of their terminal
prognosis. That is a more practical, mundane issue, but I would
be interested if you would explore that a little. On the broader
conceptual point, I realise it is rather later in the session
to get into that, and it may be that I just want to put it on
the record.
Professor Tallis: Why I prefer "intractable
distress"—which is not my phrase but I think may be
Sally's phrase—to unbearable suffering, is that it does
show that it has both objective and subjective features. It seems
to me you have to meet certain objective criteria first. If you
do not have any obvious cause of suffering, then clearly it would
be totally inappropriate even to consider somebody for assisted
dying if they have not been through the whole process in terms
of alleviation. You have to have objective criteria and then the
person themselves says whether these objective criteria translate
into something subjective: unbearable suffering. I do like the
idea of intractable distress because it relates to attempts to
alleviate it. On prognosis for improvement, there are, in a sense,
two filters there as well. We have the filter: "Yes, somebody
is very, very unlikely to live more than six months" or whatever
the barrier is, but, in addition: "They are even less likely
to get an improvement in these appalling symptoms which they cannot
bear." It seems to me there are two filters built into the
criteria for qualifying for assisted dying.
Dr Dacombe: I am not sure exactly what you would
like me to comment on.
Q1964 Baroness Jay of Paddington:
I was asking you a factual question because of my muddled remembrance
of health and social care funding—which is very complex
anyway. I thought I understood that there was—which you
would know as a director of a hospice—a specific understandable
objective criteria for funding which was used by the social and
health services on a time-based arrangement.
Dr Dacombe: Certainly, in terms of providing
for the continuing care of patients who have a requirement for
that, there is actually a cut-off point between health care and
social service care which is set at the eight week mark in most
areas. If a patient is to receive a package of care to support
them in the community, in their own home, or is to be supported
by the state in the funding of a placement in a nursing home,
there is a point at which there is an expectation that the team
in charge of their care—and specifically the doctor in charge
of their care—will offer a judgment as to whether their
prognosis is under or over eight weeks. Because the funding will
come from a health source if it is under eight weeks and a social
services support if it is over eight weeks.
Q1965 Baroness Jay of Paddington:
But it involves a prognosis involving time.
Dr Dacombe: Which does involve a prognosis involving
time, yes.
Q1966 Chairman: I am very interested
in what Professor Tallis said a moment ago in answer to the Bishop's
parable, that the concept of suffering or intractable distress
(whichever concept you use) pushes up the principle of autonomy
into a more commanding position than it would have with the gentleman
on the Westminster Bridge. The same sort of consideration arises
in connection with the general attitude to the care of people
who may be in distressing circumstances as, for example, when
they go to prison, to protect them against committing suicide.
I would find it useful to analyse a little further the concept
that you have brought forward there, Professor Tallis, as to what
it is that elevates the principle of autonomy and takes the decision
out of the kind of range that would apply to people going to prison
or somebody just standing on Westminster Bridge.
Professor Tallis: I suppose the fundamental
concept behind autonomy is that you respect the person's wishes,
or the wishes that you believe they have. It seems to me that
in the case of terminal illness, where you have tried absolutely
everything to alleviate the suffering and the outcome is pretty
certain, you have a pretty good idea of what the person's wishes
are if they express the desire to have assistance in death. The
chances of getting it wrong seem to be less. When it comes to
the chap jumping over the bridge, clearly this might be a moment
of sadness and he would regret it (or not live to regret it) subsequently,
and, there, you have so much that is uncertain, you set default
to being paternalistic and say, "Well, it is probably not
in this chap's best interests and I am going to save him."
So it is a different situation. It is partly a difference about
knowledge. With a patient who has reached the stage of being considered
for assisted dying, one knows an awful lot about the person themselves—what
they have been through, what they can stand, what mental science
can offer—so you have much more knowledge—which one
does not have, of course, for the chap jumping over the bridge.
Q1967 Chairman: In Oregon—I
think you mentioned this yourself in your earlier narrative to
us—quite a high proportion of the people who are given the
medicine (if that is the right word for it) or the drug, in order
to end their lives, do not in fact use it. In a sense, that focuses
on the fact that even the decision that they are making to request
it—because the doctor has to be pretty sure that they really
do want it—is qualified somewhat by the possibility that
they may reconsider and in fact not use the medication. It was
put to us rather eloquently by one of those who were helping us
in Oregon that the idea of having this medicine gives people a
kind of insurance that if matters get really bad they will not
have to continue, and in fact the experience has been in quite
a number of cases that it never gets that bad that they want to
use the medication. Is that an important factor, in your view,
in considering what is a wise proposal to make here?
Professor Tallis: It is, because it is not as
if they have boarded a train they cannot get off. Obviously it
is built into the Bill that you have a minimum period of consideration.
It also relates to what the Bishop of St Albans was saying—I
think it was about collateral—and it seems to me that this
is a good example of collateral. Many more people are helped by
having access to assisted dying than actually avail themselves
of this particular facility. So the knowledge that there is a
way out if you need it may make unbearable suffering—at
least temporarily, anyway—more bearable.
Q1968 Baroness Hayman: Could I come
back like a terrier to this 38 per cent or 41 per cent of people
in Oregon who feel a burden and quote that as one of the reasons
for dying. Do you feel that it is possible in your experience
of seeing patients for people to have very strong distaste for
needing help, completely divorced from any pressure from others
to give them a sense that they are being a burden? Obviously none
of us would want people to undertake the important decision because
others have made them feel that they should no longer continue.
However, in observation—the Bishop has sanctioned the use
of personal illustration—my husband had a slipped disc two
years ago. He hated, absolutely hated, the situation and considered
himself to be a burden. I really do not believe I was making him
feel that way. I hope not! I use this as an illustration because
of evidence we have had about personality type. Have you experienced,
with other patients, a phenomenon of people who, without even
the burdens of society making them feel that way, or relatives
pressurising them to feel that way—indeed, relatives not
wanting them to feel that way—still find that part of their
personal makeup is a strong distaste for being in a situation
where they need carers?
Professor Tallis: I think that is a very good
point. Being a burden is not always internalising external pressure,
which I think is the essence of what you are saying.
Q1969 Baroness Hayman: Much more
eloquently than I did.
Professor Tallis: It is absolutely right that
one may not wish to feel a burden. Obviously, in your husband's
case he did not mind feeling a burden, in the sense he knew there
was some way out, and the suffering that was unbearable ultimately
was going to end up all okay. It just seemed to me that in the
context of an illness that has only one outcome, a multiplicity
of unpleasant, unalleviated symptoms, then your own decision that
you do not want to be a burden is not actually, as I say, internalising
external pressures. Having said that, I thought I responded very
badly to what Lord McColl said about the paper because I was racking
my brain to remember the data which I half remembered. If I recall
correctly, and I may have got this wrong—I think this is
the Ganzini paper—the feeling of burden, although it may
have affected X per cent, was, first of all, not the sole feeling
or motivator for people who took assisted dying, even where they
felt a burden. I may be wrong on that and it may have to be corrected.
Q1970 Lord Joffe: You are right on
that. Indeed what the report said and the Department of Health
in Oregon also said was that it was one of several reasons. In
rating the reasons, burden came a lot lower than loss of control,
autonomy and independence.
Professor Tallis: Yes. I thought that.
Dr Dacombe: I would like to endorse Professor
Tallis's remarks about this definition of burden not necessarily
being an internalisation of external pressures. I do think people
do define what being a burden is for themselves. Certainly I have
encountered patients who would perceive their life and the prospect
of living their life to the end to be a burden, whether it is
a burden to them or a burden to others, and that is based on their
definition, perhaps despite a very loving and supportive family,
friends and all the services being available to them.
Baroness Hayman: Thank you.
Chairman: Thank you very much indeed. As I said,
you will get a chance to review the transcript in due course in
order to ensure that it says what you did say. We are very grateful
to you for your help. I am sorry this session has run on rather
longer than we had anticipated. That is a measure of the help
you have been able to give us. Thank you very much.
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