Examination of Witnesses (Questions 354
- 359)
THURSDAY 21 OCTOBER 2004
DR TERESA
TATE, MR
DONAL GALLAGHER,
MS VICKY
ROBINSON, DR
ROBERT GEORGE
AND DR
DAVID JEFFREY
Q354 Chairman: Today this is our
opportunity to hear from the National Council for Hospice and
Specialist Palliative Care Services and also the Association for
Palliative Medicine. First of all, I would mention that the evidence
will be transcribed and the witnesses will have an opportunity
to see the transcript so that they may correct any errors that
may have crept into the transcription. We would propose a session
of around an hour and a halfit could be flexible; it is
not absolutely rigid. But that is what we have in mindand
we would have in mind that you would wish possibly to make short
opening statements. We have, of course, your written submissions,
but short opening statements, either each of you or one or two,
just as you feel inclinedobviously, we would expect something
from each group represented hereand then we would have
an opportunity for the members of the Committee to ask questions
in elucidation. Thank you.
Dr Tate: Thank you, Lord Chairman. I will begin
and my colleagues will then introduce themselves and address you
briefly, if that is acceptable. I am Teresa Tate. I have been
a consultant in palliative medicine at Bart's and the London NHS
Trust for 14 years, with 10 of those years also spent in a hospice.
I am now the Medical Adviser to Marie Curie Cancer Care, and I
am here as the Chair of the Ethics Working Group of the National
Council for Palliative Care. This is a multi-professional umbrella
body for palliative care services in England, Wales and Northern
Ireland, which is made up of all the professional bodies and major
charities involved in the delivery of specialist palliative care.
Help the Hospices is a member of the National Council and has
submitted evidence to this Committee. All of my colleagues will
be happy to give evidence based on our experience of hospice practice,
and Help the Hospices would be happy to provide written answers
to any question about their evidence that you may have. In compiling
the National Council's evidence we have focused mostly on specific
aspects of the Bill but wish to open by emphasising our general
concern that there is almost no robust evidence to properly inform
the debate, either among healthcare professionals or the wider
public, on all the issues which must be resolved before a decision
to legalise physician-assisted dying is taken. Specifically, we
have identified concerns about the inadequacy of the Bill's definition
of the required qualifying characteristics of patients. For example,
the phrase "unbearable suffering" has no measurable
objective measures and, thus, no safeguards in practice. There
is no secure definition of "competence" and no protection
for patients who are considered competent but may be depressed.
We also do not believe that the waiting period of 14 days allows
an adequate time to complete the requirement of Sections 2 and
3 in an optimal way for the patient. We have particular concerns
about the way in which the speciality of palliative care is presented
as an alternative to physician-assisted dying. The Bill does not
recognise that the practice of palliative care is of most benefit
to a patient and his family when it takes place in a trusting
evolving relationship during the course of advanced illness, and
not just in the terminal phase, with the multi-professional team
providing care which allows complex psychological and spiritual
issues to be aired and addressed over time. We want to emphasise
that there is absolutely no need to introduce legislation to entitle
patients to adequate pain relief, the provision of which is soundly
based in evidenced clinical practice, and that to propose to do
so in this Bill risks confusing two very different concepts and
perpetuating any misconception which may exist in the mind of
the public about the role of the hospices and palliative care.
Finally, we are concerned that the practical, financial and manpower
implications are not addressed by a Bill which would place considerable
pressure on an already under-resourced and inequitably distributed
small speciality. The National Council wishes to record that a
diversity of views on assisted dying is held by palliative care
professionals. However, whatever their views about the underlying
principles, there is a broad consensus that the introduction of
physician-assisted dying would represent a radical departure from
clinical practice in this country. If it is legalised, health
professionals would be under a duty to raise it as an option with
their patients. We do not believe that health professionals or
society have fully assessed the implications of this change, and
we reinforce the call for properly funded and methodologically
sound research as a first step in the debate.
Dr Jeffrey: Lord Chairman, I am David Jeffrey,
Chair of the Ethics Committee of the Association for Palliative
Medicine of Great Britain and Ireland. This is a professional
organisation for over 800 doctors either working, or with a particular
interest, in specialist palliative care. I am a consultant in
palliative medicine at the Edinburgh Cancer Centre at the Western
General Hospital, and I have worked as a Macmillan consultant
at the Three Counties Cancer Centre in Cheltenham. I also have
twenty years experience as a general practitioner. Thank you for
inviting me to give evidence on this complex issue. The Association
for Palliative Medicine believes that the Assisted Dying Bill
is detrimental to the care of dying patients. The terminology
of the legislation is misleading; the practicalities of the Bill,
including patient assessment and implementation of medicalised
killing, unworkable, and resource issues have not been addressed.
The issue of pain relief is provided for in existing law and is
already part of good practice. Regulation is ineffective, as monitoring
occurs retrospectively after the patient has been killed. The
safeguards are inadequate to protect the vulnerable. There is
a great need for research into the views and decision-making process
of dying patients. Exploring and engaging with a patient's suffering
are core elements of palliative care. We believe that this Bill
would make this vital work even more difficult. Palliative care
physicians do not intend to be involved in the administration
of physician-assisted suicide or euthanasia. The Association for
Palliative Medicine is opposed to this legislation for the reasons
summarised in our submission, and I am grateful to the Committee
for this opportunity to answer questions.
Dr George: My Lords and Ladies, I am Dr Robert
George. I am a consultant in palliative medicine and a clinical
ethicist in the Centre for Bioethics and Philosophy of Medicine
at UCL. I am on both ethics committees represented here and I
advise extensively on the law and ethics of end-of-life care.
I have cared for almost 20,000 patients over 17 years, and I am
one the pioneers of non-cancer and adolescent palliative care
worldwide. For brevity I make a series of statements from my evidence
and, in response to available transcripts on the web, I have circulated
the series of cases I referred to in my original submission today,
as I understand that they have not reached you before, and I apologise
for that. Should any wish to discuss them in detail outside this
meeting, I will be most happy to oblige. The effects of legalising
assisted dying and therapeutic killing will be profound and costly
on society's view of its members and its proposed demands on the
caring professions to reverse the various code and duties relating
to life and death. In this the responsibility of this Committee
is enormous an unenviable. To my mind the heart of this debate
lies in the preservation and promotion of the human rights and
freedoms for all. To begin with some facts, first, death is inevitable,
and in that dying the burden of disease, or causal gradient, as
death approaches, is so great that the matter for the patient
is not bringing death on but either clinging to life or letting
go of it. Palliative care clinicians know this; academics and
other clinicians tend not to. I cannot emphasise this more. All
patients are able to die when they want to by letting go of life.
Second, palliative medicine in the UK requires four years' training
for accreditation, and units have to meet clear standards to be
classified as specialist. Despite being recognised as a world
leader, general training in palliative care in this country is
paltry, services are patchy and inconsistent and thousands do
not get the care they deserve. Nevertheless, the disorders of
magnitude are better than that abroad. For example, in Europe
or America hospice and palliative care clinicians have nothing
like the level of training and specialisation. Claims, for example,
that patients are in receipt of palliative care in Oregon demonstrate
this. One in four applicants for therapeutic assistance to die
have uncontrolled pain. Furthermore, multi-disciplinary assessment
seems questionable, with half not being assessed by psychologists.
This is most disturbing as incapacity and impaired judgment from
psychological distress are subtle, and depression is very difficult
to exclude in the dying. Oregon psychiatrists report confidence
in the diagnosis in only 6 per cent of cases. Third, the "heart-sink"
cases that I describe in my submission show, on the one hand,
that skilled specialist practice is capable of engaging suffering,
promoting true autonomy in dying and, in even the most difficult
situations, without resorting to therapeutic killing; but, on
other hand, they demonstrate that this Bill would profoundly hinder
or abolish this ability to assist dying properly. Turning to broad
issues, I have reviewed the literature systematically and may
be able to offer additional comment on previous unresolved questions.
For example, the desire for death, aside from the minefield of
psychological distress, demoralisation and depression, revolve
around poor symptom management, loss of control and dissatisfaction
with care, but, most worrying in Oregon, a rise in applicant's
feelings of being a burden to the family, from less than one in
five after their first year to over one in three within four years.
Second, double-effect plays little, if any, role in specialist
practice, as my cases show. Nevertheless, the distinction of killing
and letting die in medicine remains valid. Academics tend not
to appreciate this, as they have no experience of enacting ethical
decisions at the coal face. However, many doctors and nurses are
also vulnerable to emotive feelings, for example, in terminal
care, because they confuse temporal links, such as death soon
after an injection, with that injection having caused death. The
majority of junior and, regrettably, many senior clinicians worry
and report that they have given lethal injections when they are
actually falling into this temporal causal fallacy and shoulder
the burden of this misconception throughout their careers. Third,
I show a figure on page six of today's submission. I propose that,
because this Bill reclassifies in statute death as a potential
medical treatment, we cannot restrict therapeutic killing ethically
to any one group; hence safeguards and restrictions are meaningless.
These will not stand the scrutiny of the courts, for they cannot.
Case law and the epidemiology in Holland show this clearly. Predictably,
Dutch doctors are now increasingly worried by economic pressure,
now that therapeutic killing can reasonably be seen as part of
heath economics. Unfortunately, Oregon's data do not record these
risks to vulnerable patients' autonomy. Finally, as we know that
one in five euthanasias in Holland are not voluntary and considered
the best interest, I believe that the central human rights question
to answer is: how many patients in the UK are we willing to have
killed without their permission as the cost for a tiny minority
wanting their suffering resolved by euthanasia ie autonomy as
self-determination, rather than asserting their autonomy as self-government
to engage it and let go with help and specialist palliative care?
Such is authentic dying.
Ms Robinson: My Lord, my name is Vicky Robinson.
I am a nurse consultant in palliative care and have worked exclusively
with the dying for sixteen years; prior to that I was a District
Nurse. I am also a member of the Ethics Working Group of the National
Council for Palliative Care. My principal purpose here today is
to represent the view of the National Nurse Consultant Body in
Palliative Care. We are a group with a collective experience of
over 200 nurse-years in specialist practice. We have considered
the matter at length and are unanimous in rejecting the benefits
that are claimed for assisted dying. As the nursing experts in
this field, we have grave concern for the extent, quality
and sustainability of palliative skills in the nursing work-force.
Specialist training in palliative care and terminal care is not
nearly as available as it should be. The relief of suffering with
the physical, social, emotional and spiritual is central to the
nurse/patient relationship. However, when the burden of witness
is great, suffering is sustained or the skills to engage and manage
it are absent, the natural role that a nurse will adopt is to
identify with and voice that pain rather than to step back and
evaluate it. However, this does not translate into the commonly
held myth that between 60 and 80 per cent of nurses support euthanasia.
What it does imply is that 80 per cent of nurses carry emotions
accrued from entering into an important, laudable but unresolved
psychological relationship with the dying. All too often nurses
respond to an act upon the raw emotion that flows from the imperative
to serve and care, which leads many to consider euthanasia as
a necessity because they do not know how to manage suffering.
This is likely only to get worse as nurses' time with patients
is squeezed by the resource issues in the NHS and poorly-trained
staff are drafted in from other cultures to provide care. In our
experience, suffering is temporal and fluctuates. Research shows
that skilled nurses can deliver care in the manner that encourages
patients to talk intimately about their concerns. Patients attach
importance to such relationships, value them and feel supported
by them. This therapeutic relationship is crucial in care of the
dying. I wish to emphasise at this point that there is no suffering
that cannot be relieved or removed if patients have the opportunity
for expert clinical support and care by suitably trained staff.
Our efforts should be focused on raising the levels of skill amongst
the health care seen to relieve suffering, not eliminating the
problem by assisting in the elimination of the patient. Turning
now to care for the family, according to the Bill a patient need
not inform his or her next of kin. We recognise that this takes
account of patients' right to confidentiality, but we are astonished
that the Bill does not acknowledge that suffering is both an individual
and a collective experience. It is nurses who attend to the deceased,
support the family through the process and through to bereavement;
and not infrequently it is nurses who face the anger of relatives
and friends who may have been unaware of the patient's death.
The Bill states that it is a requirement for people seeking assisted
death to be seen by a specialist in palliative care. Is this to
complete a requirement for the process of attaining assisted dying
or to assess how a person's suffering may be supported, and if
possible relieved, through palliative care? If it is the former,
it is not a palliative care assessment. If it is latter, then
assessment takes, at the very least, a week and, in proportion
to the severity of the suffering experienced, may take months.
The association between assisted dying and palliative care will
confuse people. This will be to the detriment of our speciality
and the work that has gone into establishing it at the very time
when it is starting to bear fruit. We have to recognise that palliative
care is far from the standard and quality it should be. Doctors
will assume that nurses will also prepare injections for therapeutic
killing or administer oral medications for assisted dying. In
Holland the lack of recognition of the breadth and depth of these
roles has caused significant confusion over the legal status of
the nurse's role in what are called "preparing acts".
There is a tendency to view such acts as technical ones associated
with the killing itself. The wider counselling, supporting and
comforting roles of the nurse are far more significant. The
resource implications of implementing the change in law advocated
by this Bill would, in our view, be far greater than those required
to extend the good work started by the hospice movement, advocated
by the NICE guidance for supportive and palliative care and the
National Council's strategic decision to emphasise the extension
of palliative care to all. Finally, I want to emphasise that assisted
dying is a misnomer. Midwives assist birth; palliative care nurses
assist the dying with specialist palliative care: assistance is
not killing. The use of the term "assisted dying" is
offensive to those of us who are giving good care at the end of
life and is a deception to sanitise the killing to make it more
palatable to the public, the implication being that you can only
die with dignity if you are killed.
Mr Gallagher: Finally, my Lord Chairman, my
name is Donal Gallagher. I have been a qualified social worker
for thirteen years and nine of those years have been in specialist
palliative care based at the Wisdom Hospice in Rochester, Kent.
I have also been an active member of the Association of Hospice
and Specialist Palliative Care Social Workers; and, whilst I am
here today in the context of the National Council for Palliative
Care, my presence is also to ensure that this evidence is reflective
of the nature of palliative care services in the UKthat
is, holistic and multi-disciplinary. The written submission from
the Association mentioned to this Committee made it clear that
from the small piece of research that has been conducted there
is a diversity of views on the principle of assisted dying. The
main finding of this research suggested a need to continue an
informed discussion about the professional, practical and
philosophical implications of this process. Those working with
the psycho-social needs of those affected by terminal illness
wish to contribute to the deliberations surrounding assisted dying,
but at present specialist palliative care social workers are not
in a position to offer a mandated view. This echoes the absence
of sound evidence into the impact of assisted dying identified
in the National Council's written submission. Nevertheless, the
whole persona approach of palliative care and social work's specific
role in working with the non-physical aspects of those affected
by a life-threatening illness does provide a framework in which
this Bill can be viewed. There is only a passing recognition in
this Bill of the range of causes of pain at the end of someone's
life. "Unbearable suffering" is "by reason of pain
or otherwise". A more explicit recognition of the emotional,
social and spiritual context of pain and suffering is required.
If "unbearable suffering" is to have any meaning in
these circumstances, it must acknowledge directly total pain,
whereby suffering can have a psycho-social or spiritual origin.
The social factors which could cause and have in my experience
caused someone to want to die prematurely include the absence
of significant supportive relationships in their life or, conversely,
the presence of hostile and pressurising relatives. If this were
recognised in the Bill, it would be equally imperative to ensure
these needs are suitably assessed by specialists. Once again,
the Bill's emphasis is on the physical and medical. Doctors and
nurses play an essential role in the care of those who are dying,
but, with such a vital issue as assisted dying, discussing the
option of palliative care must be multi-disciplinary if the discussion
or assessment is to be meaningful. Independence in the Bill to
ensure the dying person's total needs are appropriately listened
to and assessed is missing. The requirement for one of the witnesses
to be someone other than a member of the medical care team or
the patient's relative or partner hints at the need for independence
in the process, but is diluted by the fact that an unmarried partner
of a patient could legally be a witness. The relationship between
assisted dying and palliative care is complex. In practice, I
have often heard voiced by patients and relatives the belief,
and for some the fear, that hospices already engage in a form
of assisted dying through the administration of drugs. It is therefore
reasonable to assume that legalising assisted dying and creating
the association with palliative care would add credence to this
pre-existing belief and compromise or complicate the various relationships
between those receiving palliative care outside any legislation
and the multi-disciplinary team. Once again, it is important to
carry out robust research with those currently receiving palliative
care if the effects of legalising assisted dying are to be fully
understood and considered. Thank you.
Chairman: Thank you. Would members of
the Committee who wish to ask questions please begin?
Q355 Lord Carlile of Berriew: I must
confess, I am in a bit of a muddle having heard your evidence,
because we have heard number of witnesses, including representatives
of various royal medical colleges and medical bodies, accepting
that there is some pain that cannot be relieved by palliative
care. Dr George said, "All patients are able to die when
they want to by letting go of life", which certainly would
appear to be inconsistent with Dianne Pretty's position, which
included not just being not being able to let go of life but having
to go to court to try and persuade the courts that she should
have assisted suicide; and Miss Robinson said, "There is
no suffering that cannot be relieved", which again seems
to be contradicted by the Dianne Pretty case and is possibly also
contradicted by your own other statement, Miss Robinson, that
palliative care is "not what it should be", which suggests
that in various parts of the country at least less satisfactory
levels of palliative care may be available. So my fundamental
question is: is it right that there is no suffering that cannot
be relieved? and, if so, I would be interested in your comments
on cases like the Dianne Pretty case, which has provided the impetus
for this Bill?
Dr George: Thank you for asking that question;
it is a very important one. One of the things that I would like
to say is thisand I did not look after Dianne Pretty, so
I have the information that we have seen before us in the news
and so forth.The greatest concern and sadness that I feel
for the case is that, in the majority of patients that we look
after, there are reasons for being alive and reasons to die. For
example, if you are English there is a peak of death after Christmas;
if you are Jewish there is a peak of death after Jewish New Year;
if you are Chinese there is a peak of death after Chinese New
Year; people die after anniversaries; people die after fulfilling
events. My great sadness around the situation with Mrs Pretty
is that actually the process that she went through may well have
been something that kept her alive, because it is ironic that
she died within weeks of the judgment of the European court. I
cannot comment upon that, but my concern is, particularly with
patients who are having difficulty in, as it were, letting go
and allowing the process of their dying to continue even though
they want it to, that there are other reasons that are stopping
them doing that. They may be social, they may be emotional, and
they may be spiritual. There are circumstances that lead to these
impediments. The point that I am making is that, if we are engaging
suffering of individuals, then we are excavating into the reasons
why that may be. If we are then in a position (and, of course,
the patient has to collaborate and cooperate with us in this)
to go through the process of engaging those issues, then it may
be perfectly possible for them, and indeed I would say is perfectly
possible for them, to die with great ease and comfort. I can give
you examples of patients who have a prognosis of
Q356 Lord Carlile of Berriew: Can
I pin you down on one point? Lord Joffe's Bill is underpinned
by the confident statement we have heard repeatedly that there
are cases in which palliative care cannot relieve suffering. Is
that true or not?
Dr George: I think if you look at the quality
of palliative care across the nation there will be situations
where that cannot be resolved. There are situations where suffering
is partly resolved or is unbearable because a patient is unwilling
or unable to look at the situations that are leading to that suffering.
Patients that I have looked after who have requested assisted
dying are people who wish to be in control, people who refuse
treatments, people who are not willing or prepared to engage the
issues that may underlie the problems that arise. That is an autonomous
right that they have to say "no" to those things, but
the consequence of that may be that their suffering is prolonged
as a result of that. In patients who do address that, then these
matters resolve themselves. If there are not the skills to deal
with those things, the multi-disciplinary teamwork and so forth,
then there are situations where unbearable suffering will exist.
But the answer to that, surely, is to make sure the consistency
and quality of practice across the nation, in specialist practice
and in general practice and hospitals, is brought up to speed
so that we are bringing up the quality of the specialist practice
rather than dumming it down.
Q357 Lord Carlile of Berriew: Can
I ask one other question which arose from something that Mr Gallagher
said. I think it is a very important point and it is one that,
frankly, I should have seen reading the Bill and that I had overlooked
until now, and that is that the definition of "unbearable
suffering", I think Mr Gallagher is saying, could include,
for example, being unable to suffer any more the attitude of relatives
who would rather see you dead than alive, that sort of mental
suffering, which can become unbearable, particularly for elderly
people who feel that they are dissipating the wealth of their
family as they remain alive.
Mr Gallagher: Certainly that has been my experience,
that some people either feel pressurised, and that comes from
a genuine source, or their perception is that they are a burden
to their families, even though their families would say otherwise.
So the feeling can come from a number of genuine sources or perceptions
on behalf of parties.
Q358 Lord Carlile of Berriew: That
is founded on the words "or otherwise"?
Mr Gallagher: Yes. My point is that it should
be more specific.
Q359 Lord Taverne: On that question
of pressures from relatives, we have had some evidence that in
fact the pressure from relatives is not to speed up death but,
when the patient wants to die, that the pressure is to dissuade
them from such a decision. I do not know whether that evidence
is correct or not, but would you not agree that this is something
where one can look at the experience of other countries and find
out? Do you not think that evidence from abroad is relevant to
this issue?
Mr Gallagher: I am not familiar with the evidence
from abroad. I am basing some of my submissions on my experience
of working in palliative care, and that is that some people who
are dying do feel that pressure from family members to die perhaps
before they would do otherwise, or would want to do.
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