Examination of Witnesses (Questions 40
- 59)
TUESDAY 14 SEPTEMBER 2004
PROFESSOR JONATHAN
GLOVER, PROFESSOR
IRENE HIGGINSON
and MS PENNEY
LEWIS
Q40 Lord Joffe: Even within a country
there can be difference of views and different interpretations,
would you agree?
Professor Higginson: Yes.
Q41 Baroness Finlay of Llandaff:
My questions are really for Professor Glover, and possibly a bit
for the other two presenters. When you were talking about autonomy
and sanctity of life and respect for dignity, you spoke about
the sanctity of life and fear of the physical. But you did not
talk about issues around self-worth and your perceptions of self-worth
and dignity coming from the way that you are behaved towards and
treated, and I wonder if you had any comment on Kissane's work
on demoralisation and demoralisation syndrome that occurs with
people, depending on how they are treated by those who are providing
care for them and around them?
Professor Glover: I have not read that work,
but I can well believe that how people think of themselves and
value their lives is highly likely to be influenced by how they
are treated, yes, I would accept that.
Q42 Baroness Finlay of Llandaff:
The other thing that came out in the paper you presented, and
I think you alluded to, was this concept which—you did not
use the term "double effect" but I think it has been
termed "double effect"—about unforeseen consequences
and the argument that there may not be a great difference. I just
wanted to pursue that a little bit in terms of how often and how
much evidence we have that that double effect, in the setting
where somebody is dying of their disease, does actually occur,
and whether that is different to the predictable but unwanted
effects that you may see, for example, in someone with end-stage
renal failure with an infection, where you will give them an antibiotic
which is known to be toxic; you know that that is a risk, you
hope that they will not go into end-stage renal failure because
they have an infection, but some do and some will die. Do you
feel philosophically and morally that there is a difference between
that and the perceptions of using analgesics that you allude to
in your presentation? Some might say that the misuse of analgesics
is the thing that will result in life-shortening, but the evidence
is that actually, when those drugs are used well, they may even
be life-prolonging.
Professor Glover: My comments were not really
comments of fact about what the situation is or what the actual
consequences of one medical policy or another are, because I am
not an expert on that and I think you should ask Professor Higginson
if that is what you want to know. My comments were really about
whether the intent to reduce suffering, with the foreseen consequence
that someone will die, is a principle that is morally acceptable,
whereas it is not acceptable to intend to put someone out of suffering
by means of death. I was really just reflecting the debate in
ethics about this: some people think that that is a really important
distinction, some people think it is not. I was really raising
the question— is that really an important distinction, and
if so why? I believe that part of the deep malaise of this debate
is that people tend to divide into people who focus centrally
on the consequences for the patient and say what really matters
is— is the patient suffering? Is the patient alive or dead?
people who might be called consequentialists; and the people on
the other side, who say what really matters is what we do and
what we intend to do, people who might be called deontologists.
My belief is that one reason why these debates are so extraordinarily
difficult, and perhaps one reason why they are often so passionate,
is that actually most of us have some consequentialist inclinations
and some deontological inclinations. Most of us both want best
outcome for the patient and think that ought to be central, but
also think it matters what sort of intentional actions we commit,
and there is a tension between those two. I am sorry, I am not
able to answer your factual questions about what actually happens;
as I said, Professor Higginson is better qualified than I am.
Q43 Baroness Finlay of Llandaff:
Could I just pursue this a little further because you did not
address issues of scope in terms of the effect of a decision on
others, either on the rest of the family—particularly children
in a family as relatives—or the impact of having what we
might term an arbitrary barrier of an 18 year old, 18 years being
the age limit as defined within the Bill, when we have got strong
evidence coming from the medical literature that teenagers can
actually be particularly difficult to achieve symptom control
in, and that may be the physiology of the teenage changing state.
Professor Glover: Yes. You raise two separate
issues really. One is the effect of allowing or not allowing assisted
dying on other members of the family, and again that is a factual
question which feel I am the least qualified to answer. I assume
that there are likely to be effects, either from having the knowledge
that your parent, say, is slowly dying in agony and wishes that
he or she was not, wishes to be dead and has that view overridden;
or, alternatively, knowledge that someone has decided, in the
family perhaps or the doctors, that it is acceptable to kill them.
I can imagine either of those might have a traumatic effect on
a child, for instance, but not being aware of the relevant psychological
research I am not sure which of those is likely to be greater.
The thing on the age thing—and I am very interested in what
you say that there may be differences in control of symptoms,
for instance, in teenagers—I would have thought that that
is highly relevant. My own belief is that I am always slightly
inclined to think that these lines that are drawn, say at 18 or
wherever, seem to be a bit like the speed limit. There is no magic
moment when you become an adult who is rationally competent to
vote: we all know of some young teenagers who are much brighter
at talking about politics than some people who are my contemporaries,
and I am in my 60s. What we are trying to do is to ask, as it
were, roughly where should the line be drawn, and for legal purposes
it has to be sharp, so one takes an age limit. But I actually
do agree that it may not always be exactly right in the individual
case.
Q44 Baroness Finlay of Llandaff:
Might I ask Professor Higginson, do you know of any research that
has been done into the effects on families?
Professor Higginson: I am sorry, unfortunately
I cannot think of anything at the moment, but there may be some
I do not know.
Q45 Lord McColl of Dulwich: Could
I stay on the same theme about the question of relieving suffering
by giving increasing doses of sedative? That was the situation
in the old days, but it is not the situation now. So, when you
talk about unintended but foreseen things going on, that was the
situation 20, 30, 40 years ago, when in fact you only gave them
morphine when they had the pain. There have been great advances
in palliative care, and Dame Cicely Saunders found that, if you
gave them a steady dose and kept the blood level up at an appropriate
level, kept them out of pain, they required less and they were
much more wide awake. I speak with some experience because I was
associated with setting up the first hospice for people of dying
of AIDS in Europe, in fact, so I am not unfamiliar with the subject.
The fascinating thing was that, when a patient comes into the
hospice, you may take a day or so to sort out what doses they
need of the various drugs. But, when you have settled on a dose,
by and large it tends to stay at that dose until they die. So
this question of some doctors being described as hypocrites, because
they are relieving pain but they know very well that they are
going to kill the patient, does not obtain.
Professor Glover: I am glad to hear it. What
happens to people who are kept on the stable dose and are still
dissatisfied with being alive and request to die? What happens
to them?
Q46 Lord McColl of Dulwich: Your
colleagues will probably be in a better position to answer, but
I am amazed how many people who do ask for euthanasia, once their
symptoms are relieved, no longer do. I am also fascinated by the
fact that some of those who ask for euthanasia—I remember
one particular man coming into the hospice and he said "I
want to die"—he had cancer in his bones—and they
said "I am sorry, we do not do that." He asked the next
day and the doctor suddenly remembered that his serum calcium—the
level of calcium in his blood—was kept down to a safe level
by him taking tablets. The doctor said "If you stop taking
the tablets, you will be dead in 24 hours". He never stopped
taking the tablets until he died.
Professor Glover: I think that brings out very
interestingly this point that there is a real question about how
genuine, how deeply felt the euthanasia request is. I think one
of the problems is that anecdotes like that influence us very
powerfully. There may be many cases like that; there may also
be some cases on the other side of the debate—Mrs Pretty's
case for instance—which influence people very powerfully
too. Much of the difficulty of this debate is that one needs to
bring the advocates on both sides into connection with each other
and see, as it were, if there is any way of doing justice to the
response we have to these kinds of individual cases.
Q47 Bishop of St Albans: I am very
grateful, Professor Glover, for your fundamental moral principles.
It seemed to me that lurking within them was something about the
nature of the good, but at no point did you define what you thought
the good was, either in terms of individuals or in terms of what
might be called the common good. I am wondering whether that was
a deliberate decision to omit it, or whether it is actually in
any case unanswerable?
Professor Glover: I was brought up in the Oxford
philosophy of the early 1960s, in which almost the whole of our
philosophy was about the meanings of words like good, right, ought,
duty. I like to think that one of the contributions that my generation
of philosophers tried to make is to shift discussion towards practical
issues of the kind we are discussing today. That is not intended,
please, as a put-down of the question you have asked, because
obviously there are real questions about what is a good life for
a person, what makes life worthwhile; and it would take a very
long time for you and I to debate those issues. My inclination
is to feel that in practice what one has to do is take the view
that it takes all sorts to make a world and all sorts have all
sorts of different perceptions of what a good life is, so what
we need to do, with any individual patient, whether they are medical
or cancer and so on, is try to elicit what that person's deepest
values are. They may not be the same as yours and they may not
be the same as mine, but really respecting other people seems
to me to be a matter to trying to implement for them—so
long as it does not conflict with other people's interests—what
their perception of the good life is. You also mentioned the good
of society, and one dimension of the debate is, if we are doing
the right thing for this person, if the slippery slope argument
turns out to be right we may be causing worse things down the
line, so one needs to take both of those into account. I have
not even begun to answer your question but I think I have gestured
at some points.
Bishop of St Albans: I would like to
go on, but there are other members.
Chairman: Earl of Arran.
Q48 Earl of Arran: Whilst the arguments,
the passion and the persuasion sway to and fro amongst the professionals,
do you agree that at the end of the day it is for society as a
whole to make up its mind on this— whether the law should
be changed or not?
Professor Glover: We live in a democracy and
so, ultimately, there is a sense in which all decisions—even
as to whether to go to war in Iraq—ought to be in some sense
democratic decisions, but as we know we do not take a referendum
on every issue. What I feel I am doing in casting my vote for
a Member of Parliament is voting for someone who, I hope, has
judgement that I can trust. Of course public opinion is a dimension
to consider, but I think I would be worried if the implication
of your question was that perhaps the whole thing should be decided,
either by referendum or focus groups.
Q49 Earl of Arran: It is in no way
an answer of course to create august bodies of professional advisers.
But at the end of the day, if there is no agreement amongst professionals,
which normally there is not, probably in particular on this Bill,
society should as a whole be included in the decision.
Professor Glover: What does that mean—society
should be included in the decision?
Q50 Earl of Arran: The general public
as a whole— the wish of the public as an entirety in itself—obviously
accepting professional advice at the same time.
Professor Glover: How does one measure the wish
of the public?
Q51 Earl of Arran: It is very difficult
to know, it is probably for the government of the day to decide
upon that.
Professor Glover: I suppose that, while I am
a democrat in spirit, I am also someone who is very glad that
capital punishment was abolished, despite the fact that at that
time there was a strong majority in favour of it. I do not think
I am a majoritarian who thinks that whatever the majority opinion
is must be right. For instance, if we lived in a society where
there was a racist majority, we might nonetheless be likely to
have to have legislators who would not reflect that particular
aspect of opinion.
Q52 Baroness Thomas of Walliswood:
I wonder if you, Professor Glover, have had any thought about
the differences, from a moral or ethical point of view, between
the fact that a patient may refuse treatment and the fact that
patients may be unresuscitated without being told that, and the
fact that now we are thinking about allowing a patient to request
to have her/his own life ended. What are the moral differences
between all those things? They seem to be very close together
in that they are different approaches to things that are actually
quite similar. I am asking the question because I think we have
all been approached on the subject of the slippery slope, and
what I , I suppose, want you to tell me—you are not going
to, I know that—is, if we pull that last thread, the thread
that is representing this Bill, are we going to suddenly find
a whole decoulage of things collapsing because we have taken that
one step which is essentially different from the other steps we
take in approach to the end of life?
Professor Glover: I will not discuss that after
such a brief acquaintance. You have sussed me out so well as to
know that I am not going to tell you the answer. I suppose what
I want to say is that there are two different types of issues
here; one is, is there a logical distinction that can be brought
between these different kinds of actions or failures to act; and
the other is, whether or not there is logical distinction, will
introducing one kind of thing lead causally to another? I defer
to Penney on the factual question, which is one reason why I am
not going to answer this question, because she has studied the
effects in different places of bringing in legislation of one
kind or another and I have not; so I am not going to pontificate
on the factual side. I simply say that I think one can draw logical
distinctions, but I take it that the central distinction is between
acts of euthanasia that result from respecting the person's autonomy—and
that involves thoroughly investigating what their deep wishes
are and not some immediate fleeting request—and those that
are taken by someone else in what are taken to be the person's
interests. I think that is a distinction which in logic can be
maintained; it seems to me a socially very important one to maintain,
but whether there actually is going to be an empirical side is
a matter for Penney rather than me.
Q53 Baroness Hayman: Can I follow
that up and ask you whether you feel there is an ethical divide?
One of the issues that troubles me most is between the would-be
suicide patient who has the physical capacity to end their own
life and is able so to do and some of the most difficult and troubling
cases which, as we have heard, do not often receive the palliative
care that they need—palliative care is not always available
and palliative care is very difficult to tailor—particularly
in cases of degenerative disease. Do you feel that ethically as
a society there is an issue about allowing the situation to continue
where autonomy is available to one group and not to the other,
simply by virtue of disability or the nature of their terminal
disease?
Professor Glover: I have a couple of things
to say about that. One is that it seems to me discriminatory and
objectionable that somebody who is capable of committing suicide
is able to do that, but somebody who happens to lack the physical
capacity to do that is denied it. That seems to me a case of those
who have the physical ability having more rights than people who
do not, and I think that is harsh and unjust. On the other hand,
the question of degenerative diseases seems to me an extremely
difficult one, because part of the problem with something like
Dementia is that as, you get into the position where you might
rationally prefer to be dead, you may at the same time become
not competent to make the request. That seems to me to be a very,
very difficult area.
Q54 Baroness Hayman: Motor Neurone
Disease is perhaps an easier example than Dementia to deal with
in that area .
Professor Glover: Yes.
Q55 Baroness Hayman: One other philosophical
question. You said you were not a majoritarian. Can I ask you
about minorities and the protection of minority rights here. Do
you think there is a philosophical issue or do you think perhaps
that in legal terms it is important for us to understand—
even if this is a desire or popular with a very small minority
of those who will be actually affected, should that sway our judgment
as legislators? Even if the 3 per cent who do not have the will
to live come down to 1 per cent and actually wish to avail themselves,
is it important that it is 1 per cent or 10 per cent or 20 per
cent? What weight should we give to that?
Professor Glover: It seems to me not hugely
important because under this proposed Bill or legislation broadly
of this type no one who does not want to have access to assisted
dying is going to be made to do so, so the question of respecting
the rights—if that is the correct terminology—of the
minority— whether it is three per cent, one per cent or
whatever— who do feel that they want this control over their
lives, do want to be able to make this request and have some chance
of it being acted on, is covered; and even if it is a small minority
that still does not seem to me to matter. If I may again use the
analogy of capital punishment, one of the arguments against capital
punishment is the fact that sometimes innocent people might have
been executed and, whereas you could make some sort of redress
if someone is wrongly convicted and sent to prison you cannot
do anything if you have already executed a person. I am still
worried about that, even if it is only one person; and, if there
is one person who desperately wants to avoid incontinence and
misery and is denied that, that seems to me serious and much more
serious than the fact that other people may not agree that they
should have the right.
Q56 Baroness Hayman: How would we
ever know if there was one person who availed themselves of the
right to assisted dying who would have changed their mind about
it the next day?
Professor Glover: You are absolutely right—
there are risks in both things. In the status quo there is the
risk that people who really do have a long-term desire, for serious
reasons, reflecting their deepest values, who want to die are
denied that; on the other hand, if we bring in the Bill, on the
other side of course there is the risk that people are going to
take a decision which they think is serious, and we are going
to sometimes fail probably to pick up the fact that it is a temporary
mood of depression. There are risks both ways.
Q57 Lord Patel: I have a question
for Dr Lewis. I think in your presentation, if I understood it
correctly, you put particular emphasis on the need for there to
be a doctor/patient relationship to exist in society for there
to be such legislation. Can you enlarge on that?
Ms Lewis: I think that is one of the big distinctions
between The Netherlands and other jurisdictions, in particular
Oregon, and I think that is one of the reasons why the Dutch have
sometimes said that you should be careful about translating their
experience, for example, into the US context, partly because they
have a very different healthcare system where everyone is entitled
to healthcare, unlike the US, but also they do have a system where
people tend to have very long-standing relationships with their
general practitioners, and it tends to be the general practitioner
who would provide euthanasia. I think both in terms of generally
knowing their patients and knowing what kind of person they are,
having a long-standing relationship helps with that, particularly
when you look at the criteria for the request— that it has
to be competent and it has to be voluntary and well-informed.
I think as a professional—and the evidence bears this out—it
is much easier to assess competence if you can do it over a series
of visits. One of the concerns that has been raised in the literature
on Oregon is that often there are very, very short relationships
and people are being asked to evaluate competence in half an hour,
and even if there is a referral it is still only one meeting.
Those issues about whether we are getting it right that Jonathan
was just speaking about— the dangers of missing a depression
diagnosis etc—are more serious if you are in a situation
where there is not a longstanding physician/patient relationship.
Particularly, I think, if you look at Oregon, there is quite a
lot of evidence—interestingly, halfway through the Oregon
period they stopped collecting some of this evidence, which I
found worrying—that more than half of the people who obtained
a prescription did not get it from the first doctor they asked,
which makes it even more likely that they are getting it from
someone that they have never met before or that they have only
met very, very briefly. If you look at the evidence that they
are still collecting, which is on how long was their doctor/patient
relationship, the median over the last six years has been 13 weeks.
There is not directly comparable data in The Netherlands, but
there certainly is a lot of data that suggests that the GP relationship
is the one that most often produces a euthanasia discussion and
sometimes an act of euthanasia, but that tends to be many years
in length. I think that that is a concern, both in terms of evaluating
the translatability of evidence from one jurisdiction to another
but also, I would say, it is something that we might want to consider
when deciding what kind of doctor should be able to participate
in this, whether we would want some sort of requirement that it
be evaluated by someone who has at least known me for some period
of time, whether that person be a GP or, if there has been a diagnosis
of illness that has gone on for some time, that person could be
a consultant specialist. What we might want to avoid is the situation
in Oregon where, to put it in quite blunt language, I think there
is some evidence of doctor-shopping— in other words, you
ask one doctor and, if that doctor says no, maybe because that
doctor has some concern about your competence and your voluntariness
or the durability of your request etc, you go and find another
doctor. I think our healthcare system would probably prevent that
for the most part, but there is not an explicit safeguard about
that in the Bill and it is something that is worth considering,
because it is what distinguishes The Netherlands from other jurisdictions.
Q58 Lord Patel: If we take the example
of The Netherlands, at the time when they were at the same stage
as we are— of discussing the issue whether to legislate
or not, we have heard the same issue turned the other way round—
that it is the very relationship that the general practitioner
may have with the patient's family that would make them an unlikely
candidate to assist. This is something that was different.
Ms Lewis: You mean a general feeling that, in
this country, general practitioners would be reluctant to assist?
Q59 Lord Patel: Yes.
Ms Lewis: I do not think you can say when The
Netherlands were in the same position as we are, because they
never were. There was never a big conversation in The Netherlands
25 years ago saying "Should we have a law?" They developed
their law through a series of judicial decisions and eventually
a set of prosecutorial guidelines, which were incorporated in
a regulatory manner. So they did have a big discussion but it
was not the same kind of discussion; it was not a discussion about
"Here is a law". Eventually they had some discussions
about passing draft laws, but it was many years after euthanasia
had become very well established in The Netherlands. Your question
is interesting about why is it that GPs in The Netherlands seem
to be willing to do this but maybe some GPs over here would not
be. And I do not think that there is any evidence that really
explains that, except that there are some discussions in the Dutch
literature about the Dutch character generally and why it makes
sense, given the Dutch character and Dutch history etc, that this
has developed in The Netherlands. But that discussion in the literature
is not really at all specific as to why Dutch GPs are more favourable
than GPs in this country. They certainly do not in any way force
doctors to participate in euthanasia in The Netherlands and there
are many doctors who do not, but they are actually quite a small
proportion in comparison with what I would expect would be the
case here. One of the concerns about doctor-shopping is that,
if you end up in a situation where only a small number of doctors
are willing to perform euthanasia, you do of course have a higher
risk that the doctor who performs it does not know the patient
very well, because if those doctors who do know the patient very
well are not willing to participate—and I think that may
be what is happening in Oregon—then people in the community,
your patients, will talk and they will find out who is going to
be willing to write a prescription, then they go and see that
person.
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