Memorandum by National Council for Hospice
& Specialist Palliative Care Services
SUMMARY
1. There is a dearth of methodologically
robust research into the impact that Physician Assisted Dying
(PAD) would have in the UK.
2. Because of the absence of sound evidence,
there has not been a properly informed debate, whether between
professionals or amongst the wider public, of all the issues that
must be resolved before a decision whether to proceed with PAD
can safely be made. Legalising PAD would represent a radical departure
from UK practice, which should not be undertaken unless and until
all the implications have been properly researched and considered.
THE BILL
3. The necessary subjectivity in assessing
the degree of a patient's suffering means that the requirement
that a patient be suffering unbearably cannot be a wholly effective
safeguard.
4. There should be a waiting period. Consideration
needs to be given as to its length and starting point.
5. There is no safeguard for patients who
are competent, but depressed.
6. Clause 15 is unnecessary, and encourages
misconception about the role of pain relief in end of life care.
7. If PAD is legalised, health professionals
will be under a duty to raise it as an option with patients. This
will have a significant impact on the patient-health professional
relationship.
8. Clarity is required about the degree
of formality necessary to trigger a request for PAD.
9. By presenting palliative care as an alternative
to PAD, the Bill risks reinforcing the misconception that palliative
care is solely concerned with the process of dying.
10. The Bill fails to address practical
issues about the means and place of death.
INTRODUCTION
1. The National Council for Hospice &
Specialist Palliative Care Services ("National Council")
is the umbrella organisation for palliative care in England, Wales
and Northern Ireland.
2. It is a multi-professional and collaborative
body, being born out of a partnership between national charities
in the field, Macmillan Cancer Relief, Marie Curie Cancer Care,
Sue Ryder Care, and Help the Hospices; professional associations
in palliative care; voluntary hospices; the NHS (including Primary
Care Trusts, NHS Trusts, palliative care teams, Strategic Health
Authorities, and cancer networks); and the Department of Health.
The Board of Trustees consists of members representing those organisations.
It has about 500 subscribers, and consults regularly with its
Area and Country networks.
3. This submission has been produced by
National Council's ethics working group, which advises the Board
of Trustees. It has been circulated to the Board of Trustees,
National Council's clinical advisory groups, and its Area and
Country Representatives. However, the time made available for
evidence to be submitted following the publication of the terms
of reference has not allowed for full discussion, feedback and
approval.
4. In 1997 National Council published a
position statement which set out its opposition to any change
in the law to permit euthanasia. This statement is now out of
date. The Trustees have therefore withdrawn it, with a view to
carrying out further research and work in this area. This should
not be taken to signal support for euthanasia, nor for the Assisted
Dying for the Terminally Ill Bill ("the Bill").
5. National Council recognises that diverse
views on euthanasia are held by palliative care professionals
(health and social care) in the United Kingdom.We consider that
there is a dearth of methodologically robust research into the
impact that legalisation of Physician Assisted Dying ("PAD")
would have in the UK;and that because of the absence of sound
evidence, there has not been a properly-informed debate (whether
between professionals or amongst the wider public) of all the
issues that must be resolved before a decision whether to proceed
with PAD can safely be made.
6. Accordingly, National Council will not
comment now on the principle of whether PAD should be legalised
in the UK in the future. Instead, this document will comment on:
(a) Areas which must be researched and clarified
before any decision to legalise PAD can be made; and
(b) Practical issues raised by the current
Bill.
THE BILL
"Assisted dying"
7. Conventionally, a distinction has been
drawn between a physician providing the patient with the means
to end his own life—physician assisted dying or suicide—and
a physician acting directly to end the patient's life—euthanasia.
8. Notwithstanding its title, this Bill
provides for euthanasia as well as PAD, albeit in the limited
circumstances that the patient is physically unable to end his
own life.
"Terminal illness"
9. The Bill's definition of a "terminal
illness" is wholly dependent upon the opinion of the consulting
physician.
10. Hence, it is impossible for the attending
physician to form an independent determination that the patient
has a terminal illness, as he is required to do under clause 2(2)(c).
This would necessarily preclude the attending physician from informing
the patient of his prognosis, clause 2(2)(e)(ii); and from making
the referral to a consulting physician, clause 2(2)(g).
"Unbearable suffering"
11. The Bill's definition of "unbearable
suffering" is dependent both on the ability of the patient
to express the level of his suffering to the attending and consulting
physicians, and also on the subjective interpretation of that
expression by the physicians.
12. Inevitably, assessment of suffering
must always depend upon the patient. It is impossible for any
health professional to assess objectively whether or not a patient
is suffering to an unbearable degree. It would be impossible to
agree any objective professional standards or benchmarks against
which the extent of suffering could be assessed.
13. Whilst it may be possible for the attending
physician, based on a longer relationship with the patient, to
assess changes in his level of suffering, such an assessment cannot
be made during the course of the single visit to a consulting
physician that the Bill envisages, during which all the activities
detailed in clause 2(3) must be undertaken. The time available
for such a consultation may vary between only 15 minutes and one
hour.
14. This necessary subjectivity in assessing
the degree of a patient's suffering means that this requirement
cannot be a wholly effective safeguard.
"Waiting period"
15. We strongly support the principle that
there should be a waiting period as a safeguard. Careful consideration
is needed as to the length of that safeguard, and the point from
which it starts.
16. In the Patient (Assisted Dying) Bill
2003 the waiting period was only triggered once a declaration
had been made.
17. In contrast, the 14-day waiting period
in the present Bill runs from the moment that a request for PAD
is first made. It is probable that patients making a request to
be assisted to die will come to expect that this 14-day period
is the maximum they will have to wait. The implication is then
that all the procedures required in clauses 2, 3, 4 and 5 must
have been completed within two weeks. It is clearly possible that
the 14-day period will have expired by the time the patient is
able to make his written declaration, and so qualify for immediate
PAD.
18. It is possible that the period leading
up to the signing of the declaration will become focussed heavily
on process as the patient and his professional carers seek to
ensure that the Bill's requirements have been complied with. Consideration
should be given to whether there should be a waiting period after
the declaration has been signed, which would enable the patient
to focus not on the process of qualifying for and making a declaration,
but on the decision whether then to proceed with PAD.
"Competent and Incompetent"
19. The definitions of "competence"
and "capacity" must be consistent with those contained
within other legislation currently in statute or under consideration
eg The Mental Capacity Bill.
20. The Assisted Dying for the Terminally
Ill Bill leaves the assessment of a patient's competence to the
consulting physician and of incompetence to the attending physician,
neither of whom is required to have any special expertise in such
assessments.
21. Importantly, the Bill contains no safeguard
for patients who are competent, but suffering from depression.
Depression is a recognised part of the disease journey which may
take considerably longer than 14 days to resolve.
22. The Bill requires a psychiatric referral
only for those patients whose competence is in doubt. Any patient
who requests PAD, and whom is thought to be suffering from significant
depression, should receive a psychiatric referral.
DISCUSSION OF
ETHICAL ISSUES:
Pain relief: (cl 15)
23. This is an unnecessary clause. The administration
of pain relief is well-established in clinical practice, and need
have no bearing on or connection to PAD. It is unprecedented that
a therapeutic course of action requires an act of legislation.
All patients have the right already to appropriate management
of any symptom including pain.
24. There is absolutely no need for a conscientious
objection clause in relation to the administration of pain relief
(cl 7(2)). This clause risks confusing the administration of pain
relief with PAD in the public mind and in statute. That would
harm the physician-patient relationship, and encourage popular
misconceptions about the role of pain relief in end of life care.
Death as a deliberate intervention
25. If PAD is legalised, it becomes a legitimate
form of treatment given with society's approval. It will be a
recognised way of bringing an end to suffering. Physicians will
be under a professional duty to raise it as an option with their
patients if they complain of suffering unbearably, as it will
be considered to fall in the category of "best interests".
It will be a patient's right to be informed of all available options.
26. The means by which a patient receives
information about assisted dying will be of immense importance.
It will have a significant impact both on the patient and his
relationship with his healthcare professionals. The Bill does
not deal with this.
27. There is a risk that, if healthcare
professionals are to be required to raise the issue of PAD for
discussion with their patients, the conscientious objection clause
(cl 7) might be undermined.
28. Whilst the Bill's emphasis is on the
role of doctors in providing PAD, responsibility will inevitably
be placed on all health care professionals, particularly nurses,
whose specific responsibility it is to care for and support patients
and families at the end of life.
29. The title to clause 7 refers to the
duties and conscientious objection of "physicians",
rather than more broadly to healthcare professionals.
What amounts to a request?
30. Clarity is required about the degree
of formality that is required for a patient to have informed the
attending physician of his wish to be assisted to die for the
purposes of the Bill. This is important because the date that
such a request is first made triggers the 14-day waiting period.
It is therefore essential that the date of first request can be
identified with certainty.
31. Professionals will need to clarify whether
a patient is making a formal request for assistance to die, as
opposed to expressing unhappiness in a general way.
32. The following statements might be expected
in the setting of distress when faced with the many practical,
physical and psychological complications of a life-threatening
illness. . .
"I wish it were all over"
33. Whilst such comments must always be
taken seriously, and investigated, they would not necessarily
amount to a direct request for PAD.
34. The Bill requires physicians to make
enquiry, every time such sentiments (or similar) are expressed,
to establish whether a patient is making a formal request for
PAD that would trigger the process set out in clause 2. The Bill
does not say whether such a request needs to be serious or persistent.
Palliative care and PAD
35. The Bill places considerable emphasis
on palliative care, and identifies being "informed of"
palliative care as a safeguard. However, palliative care is of
benefit throughout the course of a disease and not just at the
end of life. Appendix A contains a definition of palliative care.
36. By presenting palliative care as being
an alternative to PAD, the Bill risks reinforcing the misconception
held by patients, carers and some health and social care professionals
that palliative care is solely concerned with the process of dying,
whereas in fact palliative care benefits patients before they
reach the terminal stage of their illness.
37. That this misconception has significant
implications for acceptability and access, and so may inhibit
the development of palliative care, has already been identified
by the National Institute for Clinical Excellence.1[2]
Information about palliative care and care in
a hospice (clauses 2(2) and (3))
38. The Bill requires both the attending
and then the consulting physician to "inform" the patient
"of alternatives", including palliative care and care
in a hospice.
39. This requirement begs a number of questions:
(a) What is meant by "inform. . . of"?
A single sentence to the effect that "there are alternatives
to PAD, which include palliative care and care in a hospice"
could amount to adequate information. That is scarcely a safeguard
at all.
(b) If it is intended that more information
than that be given, the Bill should specify what information is
required.
(c) If the attending physician has not already
considered the option of palliative care for the patient, it is
unlikely that he will be able to give an adequate description
of the potential benefits of this care.
(d) The reality is that access to a palliative
care specialist might not be instantly available, or indeed available
at all. Similarly, care in a hospice is not currently available
to all who request it2[3].
The Bill does not recognise the reality of current palliative
care provision. 95 per cent of specialist palliative care at present
goes to patients with some types of cancer. Many patients are
excluded from palliative care by their diagnosis.
(e) Could a request for PAD be used to prioritise
a particular patient over others needing palliative or hospice
care? Would it trigger an entitlement to palliative care? This
raises clear issues of justice and equity. Why should a request
for PAD enable one patient to supersede another?
"Discussing the option of palliative care"
(clause 3)
40. The patient must also have been attended
by a palliative care specialist "to discuss the option of
palliative care"
(a) Again "discussing the option"
is too vague to be an effective safeguard. Nothing is said about
the length, depth, or substance of discussion required.
(b) Clarification is needed as to when this
consultation must take place, to ensure that it is in the context
of a request for PAD. The Bill is silent as to whether this must
take place before or after a request for PAD has been made.
(c) This requirement does not reflect the
reality of specialist palliative care practice. Palliative care
depends on continuity and relationship. It would not be possible
to undertake a full and proper assessment of a patient's full
palliative care needs in the time allowed for a short consultation.
(d) As above, palliative care might not be
(instantly) available.
41. The intention behind the Bill may well
be to ensure that patients are given full information about palliative
care, and receive a proper assessment of their palliative care
needs. However, this Bill does not achieve that.
Minimum compliance
42. In order to assess whether adequate
safeguards exist, the Select Committee must consider what the
minimum requirement would be for each condition of the Bill to
be met. Safeguards must be devised which require substantial information
discussion and reflection over an adequate period. Safeguards
which can be satisfied by the barest of lip service are not sufficient.
DISCUSSION OF
PRACTICAL ISSUES
Allocation of resources
43. Although palliative care provision is
more advanced in the UK than in any other country, it is still
under-funded and unable to meet the needs of all those who would
benefit from palliative care. Implementing this Bill would carry
with it considerable costs in terms of training, facilities, staff
time and compliance. Those advancing the Bill have not sought
to quantify these.
44. There are 237 palliative care consultants
in England, with a whole-time equivalent to 169.3[4]
At least 100 posts for consultants in palliative medicine remain
unfilled.4[5]
There is no set definition of a specialist cancer nurse and it
has not been possible to collect national figures on numbers of
specialist palliative care nurses.
45. There are 3,195 palliative care beds
in the UK, of which 2,522 are in the voluntary sector. The average
stay in a hospice is 13 days.5[6]
46. The availability of Day Care and Home
Care Services is also relevant here, as they will have considerable
impact upon a patient's quality of life.6[7]
47. This Bill will make demands on those
limited resources. The Committee should consider whether resources
would be better expended on improving access to palliative care,
which would have a broad benefit for a large number of patients,
or on establishing PAD, which even the Bill's supporters argue
would benefit only a few.
Process of being assisted to die
48. The Bill says nothing about the means
or place of death.
MEANS
49. We assume that the lethal dose will
be a barbiturate to be self-administered by drinking, unless the
patient is physically unable to take the dose himself. In cases
where a physician euthanases a patient, death might be administered
by injection. In either case, the means by which death is to be
provided needs to be tightly regulated.
50. The same applies to the prescription
and dispensing of the medication. A terminally ill patient might
not be able to collect the prescription himself, but wish to use
an agent. The lethal dose would be in the hands of a member of
the public for whom it was not intended.
51. Despite the language of the Bill, the
attending physician is not required to be present at the moment
the patient ends his life. For obvious reasons, the patient is
under no obligation to use the medication that he has been provided
with.
52. This raises the possibility that the
patient will be provided with a lethal dose, which will then be
kept in a non-secure place for an open-ended period.7[8]
53. Safeguards are required to ensure that
lethal doses are not misappropriated, deliberately or accidentally.
54. The Bill does not address these issues
at all. Nor does it provide any power for regulations to be made.
PLACE OF
DEATH
55. Very careful consideration needs to
be given as to where the lethal dose is administered. It may often
be in the patient's own home, but the potential impact, on other
patients and staff, of offering PAD in buildings where healthcare
is undertaken must be researched.
RESEARCH
56. Legalisation of PAD would have a significant
impact on clinical practice in the UK. The impact would be widespread,
affecting the provision of medical services, professional ethics,
and the patient-professional relationship. This is a societal
issue, not simply a health or palliative care issue. Public debate
has been largely based on opinion poll findings and much influenced
by strongly held, and expressed, opposing views. Much of the research
that is available is based on weak methodology.
57. There is a need for robust research
into attitudes towards PAD in the UK, amongst patients, carers,
professionals and the wider public. Likewise, very careful consideration
is required of the practicalities involved, should PAD be introduced
into UK practice.
58. We do not have the evidence to assess
fully the probable extent and nature of the impact of PAD on UK
practice. Until we do and there has been a full and informed debate
of what PAD would involve in practice, we will not as a society
be in a position to decide whether or not to legalise PAD, nor
will we be ready to adjust to the impact that legalisation will
have.
59. Anecdotally, we are aware of colleagues
in Belgium who have expressed shock at the speed with which legalisation
took place, and have encountered significant problems because
they were not adequately prepared for legalisation and had not
had the opportunity to think through all the issues that legalisation
raises.
60. In particular, but not only, research
is needed in the following areas:
(i) How do views change along the disease
journey?
(ii) Do physical symptoms and psychological
symptoms differ in their influence on a patient's wish for death?
(iii) How do different social, cultural and
religious backgrounds affect a person approaching the end of his
life?
(iv) How do views change once patients have
received palliative care, as opposed to being told about it?
(i) How do carers' views influence patients?
(ii) How do those views change during the
course of an illness?
(iii) How does the availability of supporting
services influence the views of carers?
(i) more accurate understanding of the
actions and intentions of doctors who state that they have ended
a patient's life.
(ii) An understanding of the consequences
of requiring doctors to offer and then bring about the ending
of a patient's life
(iii) An understanding of the impact on other
healthcare professionals who would be involved in PAD. The Bill
places a very heavy onus on doctors, as opposed to other professionals.
Is it right that doctors should shoulder so much of the responsibility
in relation to this issue?
(i) How will permitting assisted dying
affect society's view of the sick, frail and elderly?
(e) Experience in other countries
(i) To what extent can experience and
research in other countries, both where PAD is legal and where
it is not, inform our understanding of the impact that PAD would
have in the UK?
(f) Practical implementation
(i) How would PAD be introduced into
UK practice?
(ii) How would PAD safeguards be consistent
or compatible with current practice?
(iii) What lessons can be drawn from other
jurisdictions?
61. Legislating for PAD would represent
a radical departure from medical practice in this country. Such
a step should not be taken until there has been thorough research
into the issues raised above, based upon robust methodology. National
Council would be willing to participate in any steering group
meeting to agree methodology and oversee research.
62. Properly robust and detailed research
would take considerable time and money. However, the controversial
nature of these issues means that many funders are reluctant to
support research in this area.
63. Much further consideration is required
of the whole area of how, as a society, we care for those who
are approaching the end of their lives. When considering whether
to legislate in favour of PAD, Parliament should proceed with
great caution and on the basis of robust and complete evidence.
In particular there must be careful consideration as to whether
PAD can be introduced without an adverse impact on medical services
and those patients who do not wish it.
August 2004
2 NICE Guidance on Improving Supportive and Palliative
Care for Adults with Cancer, March 2004, para 114. See also Appendix
A. Back
3
See also paras 43-46 below on current palliative care resources. Back
4
2002. Source: Association for Palliative Medicine. Back
5
Evidence by Dr Keri Thomas to House of Commons Health Select Committee. Back
6
Hospice Directory 2004. Back
7
For further information about these services, see National Council's
Evidence to the House of Commons Health Select Committee, which
is enclosed with this submission. Back
8
The Oregon Reports show that 67 patients received lethal dose
prescriptions in 2003. 28 (41.8 per cent) of those did not ingest
the prescribed medication. 18 died of their illness. 10 were still
alive on 31 December 2003. Back
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