Examination of Witnesses (Questions 1940
- 1959)
TUESDAY 18 JANUARY 2005
DR DAVID
COLE, BARONESS
GREENGROSS MP, PROFESSOR
RAYMOND TALLIS,
DR GEORG
BOSSHARD, and DR
CAROLE DACOMBE
Q1940 Lord Joffe: Yes.
Dr Dacombe: No, absolutely not. Patients have
the right to be offered services but equally they have the right
to turn down services if they perceive that it is not for them.
I do not see that as a problem.
Q1941 Lord Joffe: Dr Bosshard, how
long has the Swiss law been in force which enables patients to
be assisted to die? Has that position now been accepted by society
as a whole without any kind of parliament?
Dr Bosshard: On the level of canton laws, it
has been implemented more than 100 years ago. On the level of
the government, actually it has been implemented about 60 years
ago. I would say it has always been accepted by the population
as a whole—otherwise it would not have been law—but
what has changed is the focus. You have just used the term "assistance
to patients", and "patient" is also a medical term.
But article 115 was not made in a medical context 100 years ago,
but rather in the context of matters of honour. What now has changed
is that article 115 is discussed in a medical context.
Q1942 Lord Joffe: It has been extended,
in a way, to allow doctors—-
Dr Bosshard: I would not say extended but the
context is different. But it seems to the Swiss population that
this article still is very pertinent.
Q1943 Lord Joffe: Which article?
Dr Bosshard: Article 115, allowing any citizen
to assist in the suicide of someone else as long as there are
no motives of self-interest.
Q1944 Lord McColl of Dulwich: Professor
Tallis, you mentioned the question of these folks being a burden
on their family, friends and care givers. I think you mentioned
that in the Oregon situation this was not a problem. Are you aware
that in fact in one of the studies 38 per cent of the patients
did feel that?
Professor Tallis: First of all, the Oregon data
seems to suggest that the pressure from the families was a negative
pressure, that they were reluctant to encourage the person to
avail themselves of assisted dying. In the study to which you
are referring I am not too sure whether burden was actually the
primary reason for wishing to have assisted dying; there were
other factors, including symptom control. I would have to check
that out.
Q1945 Lord McColl of Dulwich: Twenty-one
per cent in fact had inadequate pain control but 38 per cent felt
they were a burden on their family and carers and friends.
Professor Tallis: If I recall, in that same
study—and I may be quite wrong here—one of the main
reasons, and probably above burden, was the feeling of loss of
control. I may be wrong but I think I am thinking of the same
study.
Lord McColl of Dulwich: This was the Oregon
Death with Dignity: 6th Annual Report published around
about the Ides of March last year.
Q1946 Earl of Arran: This is a question
for Dr Dacombe, who has had so much experience, in a large hospice
in Bristol for many years, at the sharp end of life and death.
Obviously I would assume that your patients are aware that this
Bill is in the public domain now—it is much discussed about.
What is the interest? Is it one of a sense of relief that they
might be able to take advantage of it if the Bill became law?
Or is it one of a sense of anxiety from the point of view of that
so-called "slippery slope"? Or in all honesty are they
too old and too ill to really have views about this?
Dr Dacombe: I think it is important to say that
obviously in responding to this question anything I say is going
to be entirely anecdotal because in no way whatsoever have I carried
out a survey of my patients.
Q1947 Earl of Arran: I understand
that.
Dr Dacombe: And I am very conscious that actually
some of the patients with whom we are involved will have an awareness
and some may not. Their awareness levels will vary tremendously,
as indeed I am sure awareness in the general public varies tremendously,
as to whether they know nothing at all, whether they have heard
the occasional interview on the radio or in the newspapers, or
whether they have scanned the internet day by day, week by week
to see what has been said to you. I think we know that the level
of interest within the public generally in an Act like this will
vary. Certainly amongst the patients who would choose to share
conversations about the manner in which they are anticipating
their life might end, the manner in which they are hoping their
life might end, there has only ever been positive comment about
the thought that this Bill is at least being discussed as it is
at the present time. The patients who have chosen to make remarks
to me entirely spontaneously or where remarks have come up during
conversation it has been specifically at their request around
the issue of end-of-life care and assisted dying, the comments
have all been very positive, that their perception would be that
they would like to be having the conversation knowing that this
was within the legislation of this country.
Q1948 Earl of Arran: I find that
helpful. Thank you very much.
Dr Dacombe: Thank you. But that is very anecdotal.
Q1949 Baroness Finlay of Llandaff:
Obviously we are looking at a bill that is before us at the moment.
I wondered, Dr Cole, when you were talking about the patient's
WHO rating 4, what percentage of those have any competence impaired
and how accurately you are able in your routine clinical practice
to measure competence.
Dr Cole: I think quite a lot of those patients
do have impairment of competence, to be honest. Many of them,
as you know, will be on opiates which may impair their judgment
or that might make it difficult or impossible to participate in
this process.
Q1950 Baroness Finlay of Llandaff:
Some of them may have a degree of impairment of competence that
may be difficult to detect.
Dr Cole: I think competence is a very difficult
concept for physicians or lawyers to judge. There are patients
with mild impairment of intellectual function for whom you think
you can have a good discussion and they can express a reliable
competent opinion. There is not, as far as I know, any widely
used scale to judge competence. Perhaps there should be.
Q1951 Baroness Finlay of Llandaff:
I think relating to the other bill before us, the Mental Capacity
Bill, we have been assessing competence much earlier on as something
which has challenged some people's thinking. Professor Tallis,
you were talking about this being an option in the therapeutic
alliance with the patient, and then you were talking about patients
who are in bed, who have pressure sores and who may feel that
their life is not worth living. I wonder whether you would agree
with me that the existence of pressure sores is often a marker
of bad care, and in fact has been used as an audit tool for bad
care, and therefore I wonder how you are going to ensure that
patients who are in that situation have not actually been coerced,
perhaps indirectly, into being aware that they are too much of
a burden for the current system to cope with and that the future
therefore looks increasingly bleak because they certainly are
not getting improvements in care.
Professor Tallis: I entirely get your point.
You can imagine a vicious cycle: bad care leads to a sense of
hopelessness, reinforces worse care, as a consequence of which
people feel the only option is assisted dying. You could imagine,
if there were not all the safeguards in the Bill, that this would
lead to an increasing amount of bad care.
Q1952 Baroness Finlay of Llandaff:
Could you explain how the safeguards in the Bill will protect
a patient against that situation?
Professor Tallis: For a start, because it would
be a relatively unusual phenomenon a very bright light would be
shone on the care of the patient, not only from physicians, but
also, of course, from psychiatrists if there were any question
about mental function—depression and so on—and also
from a visit from the palliative care team. It seems to me that
the first thing a palliative care team might well do if they were
unhappy about the care of a patient, would be to point out they
are unhappy and make that very clear in the notes. I think it
is an excellent mechanism for ensuring that palliative care intelligence
penetrates the system more and more, even in advance of getting
uniform good palliative care. I am very aware, being a geriatrician,
of the deficiencies in the palliative care system, beyond a subgroup
of patients who have cancer. It seems to me that that is a safeguard
not only against a patient being driven by a sense of worthlessness,
due to poor medicine, from seeking assisted dying, but also against
bad care. There is a very small sub-group of patients who do develop
pressure sores or disintegrate, even in the best possible facilities,
when they have the best possible care. We are talking about a
small sub-group of patients. It is very important to emphasise
that. I think the Oregon figure was either 0.7 per cent or 0.4
per cent of all deaths that were due to assisted dying, so we
are talking about a very small sub-group. And there will be that
sub-group of patients in whom even the best team cannot assist
to the point where the suffering is bearable.
Q1953 Baroness Finlay of Llandaff:
I wonder if I might move on to Dr Dacombe, because you have spoken
about the palliative care team being involved. Why do you feel
that your views are in the minority in relation to other people
who are doctors working full time in palliative care?
Dr Dacombe: I am not sure I can answer that
question. I am not sure that I know. It is a fact that there are
similar views to mine in palliative care and not all my colleagues
would necessarily agree with me. I think the opinions that have
been surveyed, for instance, by the Association of Palliative
Medicine have obviously, by our own representative's free admission,
only been surveyed in an extremely basic and relatively superficial
manner. I think it would be interesting to have that surveyed
at a greater depth and with a greater accuracy and perhaps an
improved methodology. My colleagues from the Association of Palliative
Medicine, who came representing the Ethics Committee and gave
a very thorough presentation—and for whom I have enormous
respect, I might add—referred to the survey, which they
printed as an appendix at the end of their presentation. They
acknowledged themselves that it was lacking in fullness and clarity.
I do think it is an important point to make that, even within
that survey, interestingly, although the first question asked
about people's feelings about whether or not (a) euthanasia and
(b) physician-assisted suicide was, if you like, for the good
of our society, clearly, as you identify, the majority of our
colleagues were determinedly against it and it was only a relatively
small minority who were in favour. I would point out that in question
2, which asked: "How many patients in an average year make
a rational persistent request for you to end their lives?"
there were only 23 per cent of the respondents who were able to
say "None." If you look at the figures, 50 per cent
of the respondents had to state that somewhere between one and
two patients had actually made that request. If you extend further
up the figures, you get to 20 per cent of respondents who have
to acknowledge that somewhere between three and five people had
made those requests to them. Therefore, it is a fact that within
society, within our population of patients, these requests exist,
and in a sense that is what I am acknowledging here today. I acknowledge
that I am in the minority of my palliative care colleagues, but
perhaps I am not in a minority within society as a whole.
Q1954 Baroness Finlay of Llandaff:
The Bill at which we are looking at the moment asks for palliative
care to be involved. Within your own team, where I am sure you
have discussed this, how does your team view you being the person
who is the person who will give physician-assisted suicide or
even a lethal injection to a patient?
Dr Dacombe: We have discussed these sorts of
issues at some length. Generally speaking, I have encountered
much more of a positive response to the concept of this Bill than
a negative one across the disciplines, because there has been
a universal recognition within our team that the patients to whom
I have alluded do exist who make this request. I think that, generally
speaking, the team would certainly like to see this in existence
as an option for patients. Given the issue of conscientious objection
which is built into the system, they are supportive, in being
able to have a positive view of patients being able to access
assisted dying and yet knowing that they or any of their colleagues
could opt out of the process. I think that obviously is important,
as has been encountered in other areas of medicine.
Q1955 Baroness Finlay of Llandaff:
You gave us examples from your own clinical practice of patients
who have persistently wanted to die. I wonder why you felt that
these patients had not committed suicide, given that they have
a lot of drugs available to them. They may have a syringe driver
attached on which they could easily depress the plunger. I wonder
what you feel is happening in these patients who will talk about,
"I don't know that I want to carry on" or who will express
a desire for death but who do not, despite having enormous quantities
of drugs sometimes, make any attempt to put them all in a drink
and drink them all in one go as Dr Bosshard has outlined.
Dr Dacombe: I think some of the issue here is
that, despite what you have said, of which I am very well aware,
there are many patients within the small group we are talking
about who do not feel they understand enough about their medication
and how it could be taken to know what dose of what medication
they would need to take to end their life. They may even have
an awareness, or they may in the past have tried taking an excess
amount of medication and simply failed to end their life and caused
distress to those around them and, indeed, to themselves by that
failure. I do think it is somewhat unfair to assume that our patients,
in knowing that they are on a multiplicity of medication and to
some extent what that medication is and how it acts—because
I trust it has been adequately explained to them by their health
care professionals—would feel confident that they knew how
to take it specifically to end their own life.
Q1956 Baroness Finlay of Llandaff:
Could I come back to the question of the way the patients feel
and whether they feel a burden. When patients are discharged from
an in-patient unit and go to a nursing home, I wonder whether,
in your general experience, that is something which they feel
is a good outcome, or whether you encounter patients who feel
that they do not want to be in that situation of going to a nursing
home, who feel they are a financial burden to their family, as
well as emphasising the loneliness and perhaps desolation of some
of the nursing homes that may be offered to them.
Dr Dacombe: I would completely endorse the thought
that moving from a specialist palliative care in-patient unit
to a nursing home for the continuation of their care is not for
all people a particularly comfortable or wanted outcome. There
is research into this. At a very superficial survey level, we
ourselves at the hospice have looked at the outcomes for patients
transferred to nursing homes. We have identified that a number
of people do find that an extremely difficult transition. For
a small number of people, it is seen as an entirely satisfactory
outcome. It is a minority, I do not hesitate to say that, but
where they are settled into a nursing home where they perceive
they are in good care and they are closer to family and friends,
within the community that they have associated as being in their
home territory, clearly that is a comfortable outcome. For others
it is not. I am not that the issue of finance is always as big
an issue as the quality of care. I think we are very well aware
in specialist palliative care that the level of staffing and the
multidisciplinary nature of staffing is such that the care patients
receive is truly all-embracing, and that is not necessarily reproduced
within a nursing home. Although you hope they would receive good
general care, they will not have as much of the other disciplines
involved.
Professor Tallis: I do not think I can improve
on what Carole has said, except you probably know that the same
issues theoretically would arise in other end-of-life decisions,
such as the withdrawal of medication and so on, and the whole
point about this proposed law is that in fact these things are
scrutinised much more carefully, far more carefully than they
are in relation to the withdrawal of life-prolonging or life-saving
medication. I do not think it is a very specific issue for this;
in fact, if anything, the argument works the other way. Sally,
you have a much more global view of the view of older people in
this respect. I guess Carole and I look at a very small sub-group
of these people and therefore, potentially, have a distorted view.
Baroness Greengross: I do not think I can back
up my view in any way as well as you have. I feel we are talking
about a very small group of people. The whole question of being
a burden to society as a whole is something that is widespread
amongst older people, especially in Northern Europe and North
America. It is part of our culture where a lot of old people say
they do not want to be a burden on their families, however loving,
and we must accept that this is part of our culture. It is not
a nice thing that in our culture this is so prevalent. It is about
an inability to provide care in the culture that I think we would
like where people feel wanted and loved and respected. The fact
that that exists is very sad and we have to try to eliminate it.
I just think this Bill, by promoting honesty and straight-talking,
is going to be one link in a chain of improving care. I feel it
is about improving care and improving communication. As I said
to Lord McColl, people I think would feel better knowing that
their doctor is caring for them and that if the doctor was going
to be involved in saying, "Do you want me to help you end
your life?" it would be in the open. Unless that happens,
there is no question of it. I feel the burden question is a societal
problem and a problem of resources in this country, in the way
in which we allocate resources, and it has to be treated differently
from this subject. There are lots of things that get muddled up
together, like the disability organisations feeling they are undervalued.
They are. People with disabilities are undervalued. It has nothing
to do with this Bill. We have to do something about that, with
disability discrimination and the value of individuals altogether.
If we start about the burden that individuals feel they are on
society, that is about a re-allocation of resources, training
care-staff better and changing our culture, and not about this
Bill.
Q1957 Lord McColl of Dulwich: Has
Baroness Warnock helped the situation of people feeling a burden
on society, when she says they ought to push off, that they are
a burden on society?
Baroness Greengross: If I may venture an opinion,
I think Baroness Warnock was echoing a view which is widely held
and which she believes should be more widely discussed. I spoke
with her afterwards and she said, "But anything that makes
people more open and makes people discuss these things more openly
is good. That is why I did it." She has her views and I think
the doctors here will often encounter patients who share her views:
"I don't want to be a burden and I'd rather die." But
I think she was saying it to get a more honest appraisal of where
we are. Therefore, whether she was correct it is for everybody
to make up their own view. But I think that is why she did it.
Q1958 Bishop of St Albans: We have
been much helped in this Committee occasionally by the use of
what I would like to call parables: stories that are illustrative
and very illuminating. I would like to try one. I would ask you
to imagine that you are walking across Westminster Bridge and
you see somebody jumping off the bridge. You are next to one of
the life belts. This is about autonomy. Do you throw the life
belt? Do you jump in?
Professor Tallis: I like to make a diagnosis
first.
Q1959 Bishop of St Albans: There
is not time, is there.
Professor Tallis: In which case, I set the default
position to stop them from killing themselves, and then we can
look for a diagnosis.
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