Examination of Witnesses (Questions 20
THURSDAY 9 SEPTEMBER 2004
HARRIS MP, MISS
and MR TL BARCLAY
Q20 Lord McColl of Dulwich: I was
interested to hear that there was a proposal to modify Lord Joffe's
Bill as far as protecting doctors and nurses who may not wish
to be involved in this process. I was also interested to read
that that part of his Bill is exactly the same, word for word,
as in the Abortion Act 1967. Bearing in mind that at least two
Professors of Obstetrics in the UK had their lives made a living
hell simply because they insisted on doing abortions "within
the law"that was their only crimenot to mention
hundreds of midwives and budding obstetricians, who had to emigrate
for the same reason, how confident are you that the same thing
will not occur with this Bill?
Miss Annetts: If I may start by answering that
and perhaps then pass it on to my colleagues? That certainly has
not been the case in The Netherlands or in Oregon, where the doctors
may decide, for conscientious objection reasons, not to assist
the patient. So, again, drawing on that evidence, I would hope
that that would not happen in the UK. The crux of this is about
finding that partnership between the patient and the doctor, finding
the balance in relation to autonomy between these two parties.
I think it is very important that, in the same way that we are
asking for respect for the wishes of somebody who is dying, who
is suffering unbearably, that respect goes the other way, from
the patient to the doctor, for example, if the doctor feels that
they cannot assist for conscientious objection reasons.
Professor Harris: The issue of how we protect
our citizens who act in good faith out of conscience is an important
oneit arises in animal experimentation, it arises on the
other side of the abortion debate as welland of course
we have a responsibility to protect people in the appropriate
exercise of their conscience, and we should see that that is done.
Lord McColl of Dulwich: My point is that
the wording in the two Bills is identical. It did not work with
the Abortion Bill, whatever one may feel about abortion, and I
am asking what is the basis of your confidence that it is going
to work for this Bill?
Lord Joffe: May I intercede there, my
Lord Chairman, because it is my intention to amend the Bill so
that it is not obligatory for a doctor who, on conscientious grounds,
refuses to assist the patient to die. The Bill will be changed.
The reason for this is that the Human Rights sub-committee, when
they considered this particular provision, came to the conclusion
that it was probably contrary to the European Convention of Human
Rights to place that obligation on doctors. So I was intending
formally to bring this to the Committee's attention when I presented
the Bill to the Committee next week.
Q21 Chairman: I would like to ask
about the research that you referred to, Miss Annetts, into the
attitudes and the problems associated with the provisions of this
Bill. Would you be able to give us in documentary form the results
of that analysis? It must be quite extensive and I think it might
save us from having to do some of the work. Obviously we would
want to look at it in a certain amount of detail.
Miss Annetts: Absolutely, yes.
Q22 Chairman: The second point I
wanted to ask you about, you mentioned the situation in The Netherlands
in which a person in a terminal illness situation was afraid that
matters would get worse and therefore wanted something akin to
an insurance: in other words, to have the necessary prescription
at hand, not to use immediately but to use if their fears were
realised, that matters had got worse. Is that a situation for
which you think provision ought to be made?
Miss Annetts: I think it is one of the unforeseen
benefits of the legislation. I think this particular piece of
research comes from Oregon. When the Bill was passed, one of the
guiding factors was autonomy and giving terminally ill people
the right to an assisted death if that is what they wanted. But
an unforeseen benefit of that has been that terminally ill people
have found it a tremendous reassurance to them during the last
few months of their life. So that the take-up rate for prescriptions
is higher than the number of people who use this particular option
at the end. Again, research from Oregon has found that patients
find it very reassuring that, if things get too bad, they have
a way out, and that is particularly apparent in some of the Motor
Neurone Disease cases that my colleagues have been looking at.
Q23 Chairman: As far as that aspect
is concerned, you were asked earlier about why a physician needs
to be involved and the possibility of it being opened more widely
than that. I think you indicated that the link with the physician
was very important. Is there any particular reason why that kind
of request could not be made to a pharmacist and then the insurance
policy, as it were, was at hand, assuming the patient was able,
himself or herself, to make use of the prescription once it was
there? One envisages that there may be difficulties in that situation.
One could see, for example, in Mr Barclay's evidence, a development
in which that became no longer possible. Is that not an area in
which some question might arise about who should be involved in
Miss Annetts: I do not think that there is a
clear-cut answer in terms of this issue, and certainly Switzerland
has taken a slightly different approach. However, it is fair to
say that over 50 per cent of doctors in the UK believe that in
certain circumstances a terminally ill person should be allowed
medical help to die. I think that is an important point. Not all
doctors are against this. Secondly, one of my concerns would be
regulation, and this Bill is about regulation, it is about regulating
a current medical practice. I think that is one of the important
reasons why the doctor needs to be involved to the extent that
they have been in the Bill. I am not sure that we would feel comfortable
with passing this across to a pharmacist, particularly since Professor
McLean has talked about the therapeutic relationship between doctor
and patient at the end of life, which is very, very important
to the dying patient.
Dr Harris: I agree. I see no good reason why
the medical profession should be allowed to opt out of this entirely,
because respect for patient autonomy around end of life decisions
including, as I have said many times, a refusal of treatment is
in fact probably one of the most essential parts of the doctor/patient
relationship, and it would seem to me to be artificial to take
this and transplant it out of the doctor/patient relationship,
and there would have to be very good reasons to do that. I cannot
see those reasons and, as I say, I cannot agree with doctors'
leaders who claim that patient autonomy is not really the main
issue here, because there are other duties that the doctors have.
Respect for patient autonomy has always been, in my view, and
is increasingly being seen, as central to the duty of the doctor,
and that is why it is such a critical part. Of course the death
of the patient is a key part of their illness, sadly, and inevitably,
and therefore I do not understand why doctors should seek to be
removed from it.
Q24 Chairman: I want to follow that
up a little. If this Bill became law in its present form, would
there be protection for a pharmacist who knowingly provided a
prescription that would lead to the suicide effectively of the
Miss Annetts: There are provisions to that effect,
provided that all the other safeguards have been followed through,
with the involvement of the physician.
Baroness Hayman: My Lord Chairman, apologies
for not coming in earlier, but may I follow up one remark that
Miss Annetts made?
Chairman: Yes, please.
Q25 Baroness Hayman: Could you tell
me a little more about this evidence about how the unexpected
benefit came about and was assessed, because one could also envisage
unexpected dis-benefits in this situation? In this country we
have stopped allowing people to buy large quantities of Paracetamol
because of opportunistic suicide bids and, as I understand, that
has been very beneficial in terms of teenagers who shot their
livers to pieces. There is the possibility (and certainly echoed
in some of the evidence that we have had) of personal experience
of people who talk about being in despair and then, at a certain
point in the terminal illness, receiving the appropriate care
and having what is called a "good death" at the end
of it, which could be an option taken away if people cash in their
insurance policy too early. It is very difficult to evaluate that
one, but do you have any sense or response about that?
Miss Annetts: There have been a number of investigations
carried out by Oregon Health Sciences University and Oregon Department
of Human Services, often led by Dr Linda Ganzini, who is herself
a psychiatrist, and takes no position in relation to the Oregon
legislation, and it was she who started to uncover this unseen
benefit of the insurance policy
. But I think there are other aspects as well which need to be
considered, which again come from Oregon. Largely, that once the
prohibition of medical assistance to die has been removed there
can be a fuller and more meaningful discussion between the physician
and the doctor at the end of life. The patient can raise all of
their concerns, nothing is off limits; all of those concerns can
then be addressed and the best solution found for that particular
patient. In many circumstances that would be palliative care.
At the moment we have a prohibition, which means that, if a patient
actually starts talking about medical assistance to die, then
that immediately triggers concerns and difficulties for the medical
team and the nursing team as well, and I have heard that from
talking to many professional people working in this field. What
do they do with that request, because they are immediately edging
into the Suicide Act? Once you put in place Lord Joffe's Bill,
it is much easier to have that full discussion and to put the
patient perhaps in the right area for their needs to be met fully,
and many of those patients will be feeling despair and despondency.
Again, once you have a system of regulation, you can take the
patient through the prognosis, the diagnosis and palliative care.
The palliative care specialist will be required to attend and
to talk to the patient about all these different aspects and how
they can be best helped. So I suspect you would see better end
of life care and, again, that is something coming through from
Oregon and The Netherlands. Once you regulate in this area, doctors
start considering end of life care in a slightly different way,
which means that everybody ends up with a better standard of care
at the end of life.
Q26 Lord McColl of Dulwich: Can I
go back to this business that the doctor should be expected to
take part in this as part of his job? Your thinking, of course,
is from the point of view of the patient. There is another side,
which is illustrated by the man who witnessed his mother having
euthanasia, and it was done by an anaesthetist who came in and
said to the lady, "I am going to put a little needle into
your arm, it will not hurt, it will be quite painless and you
will go off to sleep and everything will be fine." A month
later the man was involved in a serious accident, was taken to
the hospital and had to have an emergency operation. You can imagine
his horror when the same anaesthetist came into the room and said
to him, "I am going to put a little needle into your arm,
it will not hurt, it will be quite painless and you will go off
to sleep and everything will be fine." So there is another
side to this too.
Dr Harris: For that anecdote there are presumably
also other alternative anecdotes out there of people who see a
doctor who is actually helpful to their loved one in easing their
suffering at their request and respecting their view and, indeed,
therefore, that would make that family have more faith in that
general practitioner or that consultant, whereas at the moment
there is the despair. There is the case of Dianne Pretty, for
example, and her family, that the doctors could not help. So there
are two sides to those experiences which will be personal.
Professor McLean: You did not actually mention
in the example whether or not the lady in question had asked for
assistance in dying.
Q27 Lord McColl of Dulwich: Yes,
of course she had. That is not the point I am making. I am saying
that there is a question of confidence among the general population.
Professor McLean: I appreciate that, but my
point is that I am unclear why the young man in question, or the
middle-aged man in question, would have been so concerned if in
fact his mother asked the anaesthetist to do that and he understood
that the anaesthetist only did that on the basis of a competent
Lord McColl of Dulwich: But we are all human
and the man was just very worried, and I am saying that there
are a number of other people who might be worried under similar
Chairman: I think that we have managed
to finish this session with everyone having had the opportunity
they wished to ask questions. Thank you all very much indeed for
coming and giving us your evidence. As I said at the outset, a
draft statement of what you have said will be circulated for you
to get a chance to see whether they are as good as you thought
they were, without of course altering the substance, only to correct
anything that appears to be a mistake in the transcription. Thank
you all very much and I look forward to receiving the account
of the researches that you mentioned earlier into the attitudes
of people in relation to the problems that we have faced in this
6 Note by witness: The view that the Oregon
Death with Dignity Act can act as an "insurance policy"
has been noted by commentators such as Dr Timothy Quill and Professor
Margaret Battin. Back
Note by witness: Bascom and Tolle (2002), Goye et al
(2003) and Dobscha et al (2004). Back