Examination of Witnesses (Questions 380
- 399)
THURSDAY 21 OCTOBER 2004
DR TERESA
TATE, MR
DONAL GALLAGHER,
MS VICKY
ROBINSON, DR
ROBERT GEORGE
AND DR
DAVID JEFFREY
Q380 Lord Joffe: Fifteen?
Ms Robinson: Fifteen in England.
Q381 Lord Joffe: But your submission
is signed by eight, I think. There must have been a rapid increase?
Ms Robinson: Right. There are 15. It was a consensus
view, the submission. I will correct that.
Q382 Lord Joffe: Does it surprise
you that Help the Hospices, which says it is the national voice
of the independent hospice movement, recorded in the submission
that, of the hospice staff consulted, which is a very intensive
consultation, one-third would treat euthanasia as an ethical obligation
and two-thirds did not consider that palliative care could provide
relief in all circumstances?
Ms Robinson: Thank you for raising that. I think
one of the major tasks within my group is to work closely with
not only our NHS colleagues but also our hospice colleagues to
better understand and assist with alleviating unbearable suffering,
which is what is written down in the Bill. I have to say that
it is my view that there are some specialist services who still
find it difficult to engage matters of suffering and find it difficult
to bring up issues of uncertainty with patients. And I see that
particularly in hospice nurses, who will enter the speciality
because they simply want to make life better for people and, because
they have not really been challenged themselves to understand
their own beliefs about the nature of the purpose of suffering
and the meaning of life, if you like, find themselves in these
terrible dilemmas where they have a patient in front of them for
whom they have reached the end of their own resource in caring
for them.
Q383 Lord Joffe: Are you suggesting
that many of the nurses in the hospice movement are not sufficiently
trained?
Ms Robinson: I think in areas of the manageability
of suffering and dealing with personal autonomy, particularly
in the context of the self-government side of autonomy, there
is a huge deficit in all nurses, not just hospice nurses.
Q384 Lord Joffe: If I could turn
to Mr Gallagher: your society, your association, rather, the British
Association of Social Workers, have put in a submission.
Mr Gallagher: I am not here to represent them.
Q385 Lord Joffe: No, I am just asking
you as a social worker what you think of your association's submission.
In it they say, "On balance we are inclined to support this
Bill, subject to rigorous testing of the proposed safeguards to
minimise the possibility of unacceptable pressure being placed
on any individual to offer assistance to die when they might otherwise
not have done so." Are you out of step with your association?
Mr Gallagher: As I say, I am not familiar with
how they arrived at that position, whether they conducted research
with their members or not; you might be able to tell me. I have
a personal view on this issue and I have a view that is representative
of the Association of Social Workers who work in specialist palliative
care, and I do not know whether that reflects the views of some
people working in the speciality. Certainly within the speciality
of social work and the speciality of palliative care there is
no agreed opinion on this at the moment.
Q386 Lord Joffe: If I might turn
to Dr Tate, you did mention research into terminally ill patients,
and I thought you might be helped by the research of DIPEX, which
is part of the Department of Primary Health Care at Oxford, who
have recently done considerable research into the subject, discussing
and spending a lot of time with terminally ill patients. What
they found was "a few people opposed to euthanasia for religious
reasons or because it seemed they were discussing involuntary
euthanasia; others expressed uncertainty. However, most people,
especially those who had seen others die, felt strongly that the
UK law should be changed to allow voluntary or assisted suicide",
and then they went on, "A few contemplated suicide but would
have preferred a change in the law to allow them to end their
lives with medical help and in the company of family and friends".
Dr Tate: I think I did say "robust research".
There is certainly evidence, again from surveys but perhaps not
yet as much as there should be, about the views of people who
are terminally ill and approaching their terminal phase. We know
from many other studies of people who are facing a life-threatening
situation that their views may change and their views may evolve
through time, depending on many different aspects of their social
surroundings but also depending on the medical and clinical care
that they have been receiving. They could be driven to assume
different positions. We have had that evidence in relation to
the kinds of treatments that people might choose to go for when
they are actually terminally ill or when they are viewing that
prospect in the future, and so the proposal from the National
Council is that we need to consider many different aspects of
how society views people at the end of life but also what people
truly would wish to have in the true knowledge of what the end
of life episodes might be. Many people, even as they face death,
have not perhaps a very clear idea of how death may meet them
because they have not been able to discuss that with their ordinary
health carers.
Q387 Lord Joffe: I am sure this research
will be very interesting for you.
Dr Tate: Perhaps Dr George might like to contribute
as well.
Dr George: There is a lot of research in the
literature on work with terminally ill patients over time. There
are a number of things that come out of it. One is that the people,
who request death, see Kelly's work, are generally people who
feel that they have been poorly investigated, their symptom control
is poor and they lack confidence in the abilities of the doctors.
Depression and disillusionment and hopelessness are common features.
The response, for example, to the desire for death tracks almost
exactly the fluctuation in pain day to day as you manage a patient.
If somebody today feels one thing today and the same person tomorrow
feels something else, the question of consistency and change over
time is much more fluid than can be captured by a lot of these
cross-sectional or even longitudinal surveys. It requires much
more sophisticated research methods to get into what is going
on here.
Q388 Lord Joffe: In clause 3(4) of
the Association's submission they deal with the question of what
is headed as "terminal" and it reads, "Clinical
evidence shows that consultants are often inaccurate in their
estimation of the patient's prognosis. Defining the terminal phase
is often much more difficult than people might imagine, particularly
in patients with non-malignant disease, such as cardiac or respiratory
failure". The source for this is given as research by Professor
Glare and a number of others referred to in the footnote reference.
Reading on in the research of Professor Glare and his colleagues,
he then goes on to add in the case of cancer patients, "Doctors'
survival predictions become more accurate closer to the date of
death and, though inaccurate, predictions of up to six months
in length are nevertheless reliable as they are highly correlated
with actual survival". Would you accept that?
Dr Jeffrey: I would not accept that. A simple
bit of practical evidence is one of the benefit forms that is
filled in for patients assigned to the doctor thinking that the
patient has six months to live. I would not like to count how
many of those forms I have signed in my life for patients still
living after a year, 18 months or even longer. It is something
which is incredibly difficult. Even in cancer patients it can
be very difficult to tell when a patient is dying. Dr Ellershaw,
who has developed a care pathway for dying patients, comments
on this and says how important it is for us to learn better ways
of making a prognosis, of being more certain, because obviously
when we are aware when a patient is dying, it is helpful for the
patient, the relatives and the staff. The reality in clinical
practice is that we can be wrong. I would agree entirely with
what you are saying, Lord Joffe, that this gets easier the closer
one gets, but predicting six months is not something that I would
like to guarantee to any patient.
Q389 Lord Joffe: I am not talking
about guarantees because there must be exceptions. I am talking
more of the generality. This question is addressed to all the
witnesses and I am not sure who will care to answer it. In the
Bill itself there is an array of safeguards, but in other end-of-life
decisions, such as withdrawal of treatment or withholding of treatment
or terminal sedation, there do not appear to be any legislative
safeguards. Are you concerned about this? and, if not, why not,
bearing in mind your concern about all the legislative safeguards
which are included in the Bill?
Dr George: The first thing is that withdrawal
or withholding of treatment is allowing the disease process to
continue. We are not causing a death by withdrawing treatment.
I draw a clear distinction between causing death and withdrawing
treatment, because it is the disease that is killing the patient.
In terms of managing treatments—and you heard this morning
clear guidelines from the GMC and the BMA on withholding or withdrawing
treatment—we will apply and deal with those closely. We
have clear guidelines from the National Council on food and fluid
management around the end of life. We have clear guidelines on
the use of opiates; we have clear guidelines on pretty well everything.
Within the current NHS the application of clinical guidelines
is now part and parcel of our practice. I do not think that something
needs necessarily to be legislated for in order for it to be followed
appropriately because what will happen if there is a change in
the law is that guidance will be issued to doctors for the reasons
of the paradigm shift I have mentioned. There will be circumstances
where doctors will feel that it is in the best interests of the
patient that their life be ended for a variety of circumstances,
so I think the existence of legislation does not really make a
great deal of difference to what we are doing because this is
clinical practice.
Q390 Lord Joffe: So, if as the next
step in this Bill it went further, the GMC would look at it very
carefully, issue very clear guidelines and doctors would be assisted
by those guidelines in applying this law?
Dr George: I think that, if any law pertaining
to medical care does that, then the regulatory body's responsibility
(which is the GMC's) is to ensure that we operate within the law.
The BMA's responsibility, as our professional body, is to offer
us guidelines about how to deal with that law. Whether or not
that law is a good law or a bad law, or whether or not doctors
end up doing other things or case law modifies it as you have
said in your own evidence, Lord Joffe, that you see this as an
incremental process I am quite sure there will be guidelines that
will follow that as time passes. My point is that, once we change
killing from a medical harm to a medical good, we have a paradigm
shift and we will be required to follow that unless we object
to it in some conscientious way, and that will be extremely difficult
to do, extremely difficult.
Q391 Baroness Hayman: On this debate
about medical harm and medical good, and going back to your description
of all patients being able to die by letting go of life, it seemed
to me that you were suggesting that that in some cases could be
a good?
Dr George: Yes.
Q392 Baroness Hayman: Would you consider
it ethical to advise a patient on ways in which they could let
go of life?
Dr George: Oh yes.
Q393 Baroness Hayman:— perhaps
by refusing food and drink?
Dr George: I give some case examples in detail
in the paper you should have today, which you can look at at your
leisure. Part and parcel of the letting-go process really is to
discuss the issues that might be impeding a person in their dying.
Are there unresolved conflicts? Are there unfinished tasks? Are
there some concerns about belief about themselves or, as it were,
the process of dying, death itself, or worries about afterwards,
those kinds of questions? Then working with that patient to resolve
those things and encouraging them within that process to start,
as it were, to let go of life, and within that patients quite
likely will stop eating large amounts of food. They may have the
odd morsel of this, that or the other but, once the letting-go
process has started, that by and large resolves itself in two
to three weeks.
Q394 Baroness Hayman: By and large?
It is important for me to understand because there is a very small
group of people here who may be intractable. I think you designated
them as people who wished to be in control.
Dr George: I did not say specifically that.
I said that was one of their characteristics.
Q395 Baroness Hayman: There will
be some you cannot persuade to take—
Dr George: Of course, because they are free
to choose what they are free to choose. That is a freedom that
they have. It does not confer a duty upon me to do something.
Q396 Baroness Hayman: No; I am just
trying to understand the options that are open to different people
who will see themselves in the same situation and whether it is
correct that—and I took down exactly the same two quotes
as Lord Carlile—there is no suffering that cannot be relieved
and all patients are able to die; and whether that is the situation
and, if only you were allowed to practise your skills properly
with everybody, that would be all right; or whether we are back
to the point that has been put by some other people (and that
indeed in your evidence has come out) that there may be a small
sub-set of people who are left unhappy by not having the option
of assisted dying but for the generality of patients that is a
price to be paid, if I can put it in that way. I am just trying
to disentangle the two arguments.
Dr George: Can I have another go at that?
Q397 Baroness Hayman: Please.
Dr George: When I said "by and large",
I can give you many examples of patients that I have spoken to
or cared for. I had one gentleman the other week. We spoke about
this and he died the following day. Another patient may take three
or four days. Another patient may take a week. Another patient
may require more time to talk. Other patients have what we call
prolonged death because they are waiting for something. They are
waiting for somebody to come from abroad, they are waiting for
a family member to arrive, they are waiting for an anniversary,
all these kinds of things, and these patients may be semi-conscious.
That group of patients may take a long time to die but, by and
large, certainly from a biological point of view, if someone is
not taking significant amounts of fluid other than to relieve
their thirst, then ultimately they will die in something like
28 days as a maximum.
Q398 Baroness Hayman: Can I ask what
the empirical evidence is—I of course respect the number
of cases that you have seen yourself—that the differential
in time people take to die, as you have just described, is related
to the fact that they are waiting for something?
Dr George: I would refer you to my paper of
2001, in which we looked at a whole series of situations. If you
look at the data on patients who have stopped food and fluids
or who have stopped renal dialysis, for example, the lead-in time
is a maximum of 28 days. If you look at the studies on the effect
of food and fluids withdrawal from patients, then it seems to
be that the cut-off of significant influence is round about one
month. There is a fairly large body of data showing that.
Q399 Baroness Hayman: No; it was
not quite that. It was what you were saying about some people
taking longer to die than other people because they are waiting
for an anniversary, which seems to suggest that there might be
some hope in that reasoning.
Dr George: There is evidence in the literature
showing this. Is that the answer you wanted?
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