Memorandum by the Association for Palliative
Medicine
1. SUMMARY AND
RECOMMENDATIONS
1. The Association for Palliative Medicine
(APM) welcomes the opportunity to debate the complex issues surrounding
euthanasia and physician-assisted suicide and recognises the ongoing
interest expressed by society in debating end-of-life issues.
2. Confusion exists surrounding the terms
used in the euthanasia debate and in the wording of the Bill.
3. The effective and proper use of analgesics
is well established and is a consequence of the work of hospices
and specialist palliative care. There is no need for new legislation
to facilitate the appropriate use of drugs to relieve pain.
4. In some of the countries that have legalised
euthanasia, palliative care services are poorly developed.
5. The appropriate scope of respect for
individual autonomy requires further scrutiny and debate in the
light of the present-day circumstances of dying and the care of
vulnerable patients in society.
6. The APM welcome the conscientious objection
clause in the Bill since palliative care physicians should not
be required to be involved in the administration of euthanasia
and physician-assisted suicide
7. The Bill postulates the ethical concept
that death is a "moral good". There is the danger that
if death and "medicalised killing" become regarded as
in the best interests of competent patients there will be a moral
obligation to extend this to incompetent patients.
8. Little robust evidence exists on patients'
decision-making at the end of life. This debate needs to be informed
by rigorous research into patients' views and attitudes to euthanasia
and physician-assisted suicide.
9. There is a need to improve communication
and advanced care planning of end of life care. In this way patients
may have enhanced autonomy that is specific to their needs without
violating the autonomy of others.
10. All patients who need palliative care
should have access to this care at an appropriate level to meet
identified needs .There is a need to develop and expand palliative
care services at all levels, including funding research into improving
care of the dying.
11. The Bill does not provide adequate safeguards
to protect vulnerable members of society.
12. Existing legislation in Holland and
Belgium has not prevented significant numbers of cases of "medicalised
killing" being carried out where the patient has not given
consent.
13. The resource implications of this Bill
in terms of time, staff and facilities are significant and have
not been addressed by the Bill.
14. The Bill threatens the integrity of
the medical profession and the future of palliative care.
15. The Bill could disadvantage the palliative
care of patients who did not request euthanasia by distorting
clinical priorities
16. The Association for Palliative Medicine
remains opposed to the legalisation of euthanasia and physician-assisted
suicide.
2. BACKGROUND
2.1 The Association for Palliative Medicine
of Great Britain and Ireland (APM) is the national professional
organisation for over 800 doctors working in, or with a particular
interest in, specialist palliative care. The Ethics Committee
of the Association is elected by the membership. (Appendix 1)
This submission has been ratified by the Executive Committee of
the Association and reflects the views of the large majority of
members. (Appendix 2) The APM submits this report to the House
of Lords Select Committee to express our views regarding The Assisted
Dying for the Terminally Ill Bill.
2.2 Since the last House of Lords Select
Committee report on euthanasia 10 years ago, there have been some
changes in the legislation of euthanasia and physician-assisted
suicide in other countries. These may be summarised:
— Rights of Terminally Ill Amendment
Act 1996, Northern Territory, Australia made euthanasia and physician-assisted
suicide legal.
— 1997 Law made ineffective by Parliament
of Australia.
— 1997 Physician-assisted suicide (but
not euthanasia) legalised, Oregon Death with Dignity Act.
— April 2002 euthanasia and physician-assisted
suicide legalised in the Netherlands.
— May 2002 legalisation of euthanasia
in Belgium.
— Also, Article 115 of the Swiss penal
code condones assisting suicide for altruistic reasons. It does
not require the involvement of a physician nor that the patient
be terminally ill.
2.3 The legalisation of euthanasia and physician-assisted
suicide has been debated since the 1970s and polarised into two
opposing views; "for" and "against". The principal
arguments "for" euthanasia and physician-assisted suicide
concern respect for autonomy and the relief of pain and suffering.
Those arguing "against" argue from the intrinsic wrongness
of deliberately taking innocent human life, the integrity of the
medical profession and the potential for abuse (which may be framed
as a slippery slope argument).(1) We do not propose to repeat
all of these arguments but rather to highlight the practical and
ethical difficulties which, in our view, make legislation of euthanasia
unworkable. We have taken the opportunity to suggest positive
measures, including the need for further research, which would
improve our understanding of these complex end of life issues
and to deliver better care for all patients at the end of their
lives
2.4 Since the House of Lords Select Committee
reported ten years ago, the APM share the concerns expressed in
their report and remain opposed to the legalisation of euthanasia
and physician-assisted suicide.(2) Furthermore, the European Association
of Palliative Care and the British Medical Association are opposed
to euthanasia legislation. Our opposition to legislation is based
on our clinical experience in caring for dying patients and their
families and on overwhelming evidence from the peer reviewed literature.
We present our specific concerns regarding the proposed legislation.
2.5 Across Europe there is little evidence
of concerted attempts to bring about the legalisation of euthanasia
through parliamentary processes.(3) Those countries which have
legalised euthanasia generally have poorly developed specialist
palliative care services.(4) In contrast in the United Kingdom
models of palliative care have been developed at generalist and
specialist levels. Nevertheless, significant challenges and difficulties
remain [RG1]:
(a) Access to this care is mainly limited
to patients with cancer and some advanced chronic neurological
diseases and provision of care remains patchy, due to inadequate
resources.(6)
(b) Whilst the specialist services that are
available are generally of a high standard, the specialty still
has much research and development to do in the areas of suffering
and symptom control. Sadly, this need is not reflected in research
funding for palliative care.
(c) Most palliative care is delivered primarily
through primary health care and in hospitals by general clinicians.
Whilst there have been programmes funded from central government
to assist in education on the basics in palliative care, the general
quality of care remains variable.
(d) Consequently, bad death and unnecessary
suffering continue to occur, as the testimonies of those in favour
of euthanasia demonstrate. We cannot hope to confer on people
the dignity in their disabilities and their dying that they deserve
when support services for community nursing, out of hours care,
occupational therapy, the provision of aids in the home and continuing
care packages remain at the current inadequate levels. This has
been brought to the attention of the Commons Health Committee
that looked at Palliative Care recently.(5)
(e) There are also failures in specialist
palliative care services. Recruitment into practice is as difficult
as any other specialty.(5) Consequently, due to inadequate resources,
poorly qualified or inexperienced staff, patients and families
that should have had well-managed death have not. This is a continuing
concern to us, and a matter for training and supervision that
falls to the specialty as it develops.(5)
(f) Priority for access to specialist palliative
care should not be solely determined by a request for euthanasia
or physician-assisted suicide.
3. THE LANGUAGE
OF THE
DEBATE
Confusion exists surrounding the terms used
in the euthanasia debate and in the wording of this Bill.
3.1 Palliative Care: World Health Organisation
definition 2002(7)
"Palliative care is an approach that improves
the quality of life of patients and their families facing the
problems associated with life-threatening illness, through the
prevention and relief of suffering by means of early identification
and impeccable assessment and treatment of pain and other problems,
physical, psychosocial and spiritual."
3.2 Many definitions of euthanasia and physician-assisted
suicide have been formulated.
The European Association for Palliative Care
Ethics Task Force recommends the following definitions (3):
"A doctor intentionally killing a person
by the administration of drugs, at that person's voluntary and
competent request."
Their inclusion of a "doctor"
as the agent is based on the Dutch model and has provoked controversy
in the literature.(8) Medicalised killing of a person without
the person's consent is not euthanasia, it is murder.(3)
Physician-assisted suicide
"A doctor intentionally helping a person
to commit suicide by providing drugs for self-administration,
at that person's voluntary and competent request"
3.3 The APM believe that palliative care
physicians should not be required to be involved in the administration
of euthanasia and physician-assisted suicide. It is significant
that the word "euthanasia" does not appear in the proposed
legislation which covers both euthanasia and physician assisted
suicide in the "softer" but confusing term "assisted
dying." This Bill is actually about medical help to end life,
since it is about both the prescription and possibly administration
of lethal doses of medication ie assisted suicide and euthanasia.
It is about deliberate acts to end life, not about assisting in
the natural dying process which the term "assisted to die"
could be taken to mean.
The Bill also seeks to confuse the issue further
by suggesting that new legislation is needed to ensure patients
with terminal illness receive analgesics. Existing law enables
doctors to give pain relief, even if doing so may risk shortening
the life of a terminally ill patient, and to deny patients such
relief is negligent.
3.4 Terminal
Clinical evidence shows that consultants are
often inaccurate in their estimation of a patient's prognosis.
Defining the terminal phase is often much more difficult than
people might imagine, particularly in patients with non-malignant
disease such as cardiac or respiratory failure.(9)
3.5 Unbearable suffering
Objectively determining the severity of suffering
is not possible; it is what the patient says it is. Suffering
is an entirely subjective concept which is determined by a host
of factors including most importantly the patient but also the
society in which he/she lives, the healthcare professionals view
and the levels of support available. In 35% of euthanasia requests
in Holland doctors refuse requests on the basis that the suffering
of the patient is insufficiently severe.(10)
3.6 Terminal or palliative sedation
Terminal or palliative sedation in those imminently
dying must be distinguished from euthanasia. In palliative or
terminal sedation the intention is to relieve suffering, the procedure
is to use proportionate doses of a sedative for symptom control
and the outcome is alleviation of distress.(3) In euthanasia,
the intention is to kill the patient, the procedure is to administer
a lethal drug and the outcome is immediate death.
4. DEVELOPING
THE ARGUMENTS
4.1 Arguments derived from the appropriate
scope of respect for Autonomy
The appropriate scope of respect for individual
autonomy requires further scrutiny and debate in the light of
the present-day circumstances of dying and in relation to the
wider interests of vulnerable patients and society.(1)(11)
4.2 Death as a moral good
There is a danger of reclassifying death from
euthanasia and physician-assisted suicide as a potential moral
good.(11) In Holland, death and "medicalised killing"
is considered to be in the best interests not only of competent
patients who request it, but also in incompetent patients, where
the doctor(s) judge patients to be suffering or in possession
of a life no longer worth living.(19)
4.3 We do not believe that killing is the
best treatment for the sufferings that are part of our humanity.
Particularly when poor clinical care has reduced a patient's dignity
and social isolation has led to a loss of personal relationships.
The APM suggests from the clinical experience
of its members that with the proper provision of palliative care
services, and adequate and timely access to practical and necessary
support for patients and their family, persistent requests for
euthanasia are infrequent. Where they do exist, the solution lies
in providing support and the best possible care to engage with
issues such as hopelessness, helplessness, loss of meaning and
existential distress, not in euthanasia or physician assisted
suicide.
The APM welcomes the conscientious objection
clause in the Bill. Euthanasia and physician-assisted suicide
should not be part of the responsibility of palliative care physicians.
4.4 Relief of suffering is an important
goal of medical care. However, palliative care cannot, and does
not claim to be able to relieve all suffering. There is no sort
of care that could ever alleviate all suffering (especially some
expressions of social, psychological and spiritual distress),
but the first step to addressing the majority of this suffering
is to ensure effective support and skilled interventions are available
to those who require them, rather than introduce a way to end
these individual's lives. The inability to relieve all suffering
is inevitable and is part of the human condition. We believe that
implementation of this Bill could increase suffering in vulnerable
patients and their families by reducing trust, increasing fear
and inhibiting patients from disclosing their concerns to doctors
and other healthcare professionals.(11)
4.5 Patient's views
We have little reliable evidence as to how most
dying patients feel about euthanasia and physician-assisted suicide.
Such evidence that does exist indicates that requests for euthanasia
and physician-assisted suicide relate to feelings of "disintegration"
which results from symptoms and loss of function and a "loss
of community" which describes the progressive loss of opportunities
to initiate and maintain close personal relationships.(12) These
factors contribute to a feeling of a "loss of self".(12)
Thus the decision to have euthanasia or assisted suicide could
change with meaningful changes in an individual's social circumstances
independently of disease progression.(12)
Existing studies into patients' reasons for
requesting euthanasia or physician assisted-suicide, suffer from
significant methodological weaknesses. They describe features
such as depression, hopelessness, psychological distress and need
for social support. However how these factors lead people to request
euthanasia or physician assisted suicide has not been explained.(15)
What seems to be clear is that the relevant factors can change
as the patient approaches death.(13)
The criteria in this legislation fail to provide
a framework to address the social circumstances that contribute
to the desire for euthanasia or assisted suicide. This vital part
of end of life care needs to be informed by rigorous research
into the patient's views and attitudes to euthanasia and physician
assisted suicide.(15)
4.6 Individual requests for euthanasia and
physician-assisted suicide are complex in origin and demand careful
attention with open and sensitive communication. The complexity
of the notion of a "loss of self" means that there is
a need for clinicians to consider the evaluation of a request
for euthanasia or assisted suicide as an important clinical skill.
(14) Sensitive exploration of the request can help to identify
the real needs of an individual patient.(14) The request for euthanasia
or physician-assisted suicide seems to point to a series of concerns
that the patient has about dying; relating to loss of self, loss
of dignity and the social context of dying. Understanding these
concerns may help us to improve the care of dying patients.(14)
Communication surrounding end of life issues is a core skill in
palliative care and depends upon a trusting doctor patient relationship.
There is a need to improve communication skills of doctors and
advanced care planning of end of life care to enhance patient
autonomy.
4.7 Lack of protection for the vulnerable
The Bill does not provide adequate safeguards
to protect vulnerable members of society.
1. The Bill contains a requirement that
a specialist in palliative care must "discuss the option
of palliative care" with the patient before a declaration
can be signed. The purpose of the single consultation is unclear.
Is it to give the patient some basic information about palliative
care, or; to provide more detailed information; or to assess the
patient to establish what precise options might be available to
that individual patient? To discuss options appropriately necessitates
assessing the patient in order to be able to discuss relevant
care. If the assessment is to be carried out by a clinical nurse
specialist this will have implications for provision of training.
2. The assessment of the euthanasia request
as envisaged in the Bill can create a barrier which subtly alters
the doctor-patient relationship and may paradoxically impair the
possibility of discussing the hopes and fears driving the euthanasia
request. It can be even more difficult to assess a patient's needs
when the goal of euthanasia dominates discussion.
3. Assessment in specialist palliative care
depends upon continuity of care and is an ongoing dynamic activity.
It is unrealistic to imagine that a single consultation with a
patient could reveal all the factors behind a request for euthanasia
or physician-assisted suicide. It often takes weeks to establish
a sufficiently trusting relationship with some patients. Compounding
these difficulties is the lack of time, continuity and the fact
that many patients have a number of attending physicians and other
healthcare professionals necessarily involved in their care.
4. The Bill makes no mention of what is
to be done when the experts disagree in their assessments.(16)
5. Commonly in clinical practice many patients
are apprehensive and may be reluctant to accept palliative care.
However they almost always change their minds once they experience
this type of care. Thus it may be that many patients might initially
reject palliative care when given basic information about it at
a single interview. Another common manifestation of this scenario
is the frequent expression by patients who have received palliative
care. "Why did no-one tell me about this care earlier on".
6. There is no allowance made in this legislation
for depression which falls short of incompetence. Depression may
be difficult to diagnose. The attending physician and the consulting
physician do not need to have had any psychiatric or palliative
care training, if they miss the diagnosis and presume competence
the existing safeguards of the Bill are ineffective.
7. The attending physician cannot form an
independent opinion as to whether the patient is terminally ill,
because the Bill's definition of a terminal illness is wholly
dependent on the view of the consulting physician.
8. The waiting period is too short, and
could be completed at the moment that the patient signs a declaration,
without any subsequent cooling-off period.
9. A monitoring commission is useful only
to the extent that cases are reported to it. The Dutch experience
demonstrates that almost 50 per cent of cases are not reported
to the authorities.(17) Indeed it could be the most borderline
cases which do not fulfill the criteria for euthanasia which are
concealed.
10. Why does the monitoring commission review
cases retrospectively? It would be much fairer and a better safeguard
to monitor applications to ensure the qualifying conditions had
been met for euthanasia or assisted suicide before the death,
not after.
4.8 Legislation abroad
Looking at the effect of different laws in different
countries will not necessarily predict the effect of the proposed
Bill in this country and so is of limited value. However the Dutch
data from 2001 are cause for concern.(18)(19). Euthanasia was
carried out in 2.6 per cent of all deaths (3,640), physician-assisted
suicide in 0.2 per cent (280) and "life-terminating treatment",
where there is no explicit request, 0.7 per cent of deaths (966).
Legislation has been unable to prevent life-terminating
treatment without consent. Furthermore there is evidence that
approximately 50 per cent cases of euthanasia are not reported
by doctors who feel it is a matter between themselves and the
patient.(8, 10) Thus the exact extent of euthanasia being carried
out without consent is unknown (17).
4.9 Resource implications
(a) Palliative care resources are limited
and in reality largely confined to a proportion of those people
with cancer. Further resources would be needed, both to enable
assessments to take place, and then ensure that adequate palliative
care is available to meet identified needs. What would happen
if following the consultation, the patient decided to have palliative
care, but none was available?
(b) The Bill does not state where the euthanasia
or physician assisted suicide will take place. We would be concerned
about the effects on other patients if assisted dying took place
in the same ward or even building as the one in which they receive
treatment. Much of hospice care is provided by charitable monies
currently—and charities are highly unlikely to accept euthanasia
and physician assisted suicide within hospices.
(c) Patients wishing to remain in a hospice/specialist
unit could avoid discharge simply by making a euthanasia request,
thus denying more needy patients access to care. The Bill states
that the patient must be informed of the alternative of "care
in a hospice". If all patients who say they might want euthanasia
thus become entitled to "care in a hospice" then it
is likely that more hospice beds will be needed and possibly for
longer periods of time per patient. The Bill does not limit the
length of time the "care in a hospice" is to be made
available for. The average length of stay currently in a specialist
palliative care unit is around 13 days, but this could lengthen
considerably if the Bill becomes law and the patients are seen
to be entitled to care in a hospice if they are considering euthanasia.
It is of course also unjust that patients who are considering
euthanasia become automatically and legally entitled to care in
a hospice regardless of their actual care needs, and so they effectively
"trump" all other patients who have no right similarly
enshrined in law to ensure they will get a hospice bed, however
desperately they might need it.
4.10 Integrity of the profession and impact
on medical practice
The potential effect on relationships between
patients and their doctors and the impact on current medical practice
should be considered:
1. The risk of losing trust and damaging
care is high. This is an area of practice where research is needed
to establish the consequences of legislation.
2. Would euthanasia and physician-assisted
dying be legitimate treatment outcomes that doctors would be obliged
to raise with all dying patients?
3. How will the new law be enacted if a majority
of doctors conscientiously object to performing euthanasia and
physician-assisted suicide? There would be a legal requirement
for an "objector" to refer on to someone who has no
objections. There would need to be local lists of participating
doctors and nurses. The stress on these professionals could be
enormous.
4. There is a strong possibility that some
palliative care doctors could also refuse to carry out the required
assessment consultation, fearing that they might become implicated
in euthanasia.
5. The Bill only makes it legitimate for
a doctor to provide the patient with the means to end his life.
Despite the language ("attending physician"), the doctor
is not required to be present at death, and the patient is not
required to administer the lethal dose immediately. What safeguards
are there to ensure that the lethal medicine is kept secure and
administered properly? For how long should the patient be allowed
to keep the lethal dose without administering it?
6. There is no mention in the Bill as to
the methods involved in either assisted suicide or in euthanasia.
It is worth noting that complications such as failure of completion,
myoclonus and vomiting may occur in both assisted suicide and
euthanasia in 3-16 per cent of patients resulting in traumatic
experiences for patients.(20)
7. What would the costs (time, staff and
money) be of training, implementation and compliance including
the costs of staff and facilities?
4.11 Social implications
What will be the effects on society of permitting
direct acts of killing, and so weakening the prohibition against
killing which currently protects us all? There are strong cultural,
moral and legal prohibitions on killing but this Bill introduces
the concept of death as a moral good. Will this new Bill change
the way in which society views the sick and dying as an inconvenience
that have to be disposed of?
Will patients feel more of a burden to their
families and society and feel that they ought to ask for euthanasia,
and feel guilty if they don't? In other words, will the proposed
new law actually increase the mental suffering of the patients
who would not necessarily want euthanasia but need care and can
easily be distressed by feeling a burden? As we have stated there
is much that we need to learn about the impact of a patient's
social circumstances in generating a request for euthanasia or
physician-assisted suicide. Good qualitative social research is
much needed in this area.
5. CONCLUSIONS
Palliative care is concerned with enabling patients
with advanced life-threatening conditions to live with the best
possible quality of life until they die. Clinical experience and
research suggests that the majority of requests for euthanasia
or physician-assisted suicide arise as a result of poor symptom
control, depression, poor social and family support and a loss
of autonomy. Palliative care concentrates on improving these aspects
of a patient's life and the provision of this care should be the
starting point for any debate on assisted dying.
Such care involves working closely with patients
and their families' suffering. When a patient is in the terminal
phase then the goal of care is to enhance the dignity of the individual.
If this legislation is passed there is a risk that some patients
will die against their wishes.
The Association for Palliative Medicine opposes
this legislation and suggest that the interests of dying patients,
their families and our wider society would be better served by
increasing access to palliative care, improving the communication
between healthcare professionals and patients, gaining a better
understanding of the needs of dying patients and informing the
public about these highly complex issues in an honest way.
6. REFERENCES
1. Battin MP. Euthanasia and Physician-Assisted
Suicide in The Oxford Handbook of Practical Ethics
Ed LaFollette H. 2003. Oxford University Press. Oxford.
2. House of Lords Report of the Select Committee
on Medical Ethics. 1994 London: HMSO.
3. Materstvedt LJ, et al. Euthanasia
and physician-assisted suicide: a view from an EAPC Ethics Task
Force . Palliative Medicine 2003; 17: 97-101.
4. Ten Have H et al Ed The Ethics
of Palliative Care: European Perspectives. 2002. Open University
Press. Buckingham.
5. Hoy A. Written evidence to the House
of Commons Health Committee regarding Palliative Care. Association
of Palliative Medicine 2004.
6 Wasson K et al The Ethics of Non-Cancer
Palliative Care in Non-Cancer Palliative Care eds Higginson
I, Addington-Hall J. 2002. Oxford University Press Oxford.
7. Sepulveda C et al, Palliative
care:the World Health Organisation's global perspective. J
Pain Sympt Management 2002; 24: 91-96.
8. Materstvedt LJ Palliative care on the
"slippery slope" towards euthanasia. Palliative Medicine
2003; 17: 387-392.
9. Glare P et al. Predicting survival
in patients with advanced disease. In Oxford Textbook of
Palliative Medicine 3rd Edition Ed Doyle D, Hanks G, Cherny
N, Calman K Oxford University Press Oxford 2004 pp 29-40.
10. HaverkateI et al Refused and
granted requests for euthanasia and assisted suicide in the Netherlands:
interview study with structured questionnaire. BMJ 2000;
321: 865.
11. George R (personal communication) Case
against the Assisted Dying Bill To be submitted to The House
of Lords Select Committee on Assisted Dying.
12. Lavery JV et al Origins of the
desire for euthanasia and assisted suicide in people with HIV-1
or AIDS: a qualitative study. Lancet 2001; 358: 362-67.
13. Cochinov HM et al Will to live
in the terminally ill Lancet 1999; 354: 816-19.
14. Back AL et al Commentary; Desire
for physician-assisted suicide: requests for a better death? Lancet
2001; 358: 368.
15. Mak YY et al Patients voices
are needed in debates on euthanasia. BMJ 2000 327: 213-215.
16. Kissane DW et al Seven Deaths
in Darwin; Case studies under the rights of Terminally ill Act.
Northern Territory Australia Lancet 1998; 352; 1097-102.
17. Sheldon T New penalties proposed for
Dutch doctors who flout the law. BMJ 2004; 329: 131.
18. Onwuteaka-Philipsen BD, et al.
Euthanasia and other end-of-life decisions in the Netherlands
in 1990, 1995, and 2001. Lancet 2003; 362: 395-400.
19. Keown J The Dutch in Denial? In Euthanasia,
Ethics and Public Policy, Cambridge University Press Cambridge
2002.
20. Groenewood JH et al Clinical
problems with the performance of euthanasia and physician-assisted
suicide in the Netherlands New Engl. J Med 2000; 342: 551-6.
ACKNOWLEDGEMENTS
The APM ethics committee would like to thank
Dr Rob George, Dr Fiona Randall, Simon Chapman, Dr Pat Alquist,
Dr Neil Jackson and Sheila Richards for their help in producing
this report.
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