Memorandum by Help the Hospices
1. Help the Hospices solicited views from
69 hospice staff during a six-month consultation period. The sample
was not scientifically selected and conclusions regarding the
frequency of views in independent hospices as a whole should not
be extrapolated from the data to which the submission refers.
The submission and summary use the term euthanasia to refer to
all forms of assisted dying.
2. About two thirds of respondents identified
it as unethical for health care professionals to assist death
whilst about one third of respondents would treat it as an ethical
3. Respondents were divided on whether the
introduction of euthanasia would undermine or promote the exercise
of patient autonomy in terminal care.
4. Many respondents argued the introduction
of euthanasia would deny patients the sense of sanctuary that
hospice care currently offers, and would compromise the relationship
of trust between professional carers and patients. However, a
minority argued that better communication between professionals
and patients would result from implementing the Bill.
5. A minority of respondents indicated they
would find euthanasia more acceptable if the physician assisting
death were not the attending physician and/or if assisted deaths
took place outside hospices.
6. The majority of respondents did not consider
that palliative care could provide relief in all circumstances.
However, many respondents did not regard the efficacy of palliative
care as determinative of the moral status of euthanasia.
7. The following were seen as significant
problems in implementing the Bill:
patient competence throughout the
the requirement that patients be
physician and psychiatric referrals;
the 14 day waiting period;
continuing care for those seeking
assisted death, particularly symptom control;
the capability of legal and lay witnesses
in carrying out their duties; and
accountability of the physician attending
8. The Bill was seen to require further
clarification in respect of:
the rights of competent terminally
the definition of unbearable suffering;
the capacity of hospice volunteers
to act as lay witnesses;
the apparent absence of a requirement
that the patient be competent in order to understand that they
possess a right to revoke; and
ability to defer the date of death
without revoking a valid declaration.
9. The Bill's focus on physician decision-making
was regarded as inconsistent with good practice in multi-disciplinary
1. Help the Hospices supports hospices in
the UK through grant-aid; education; training; information and
advice. It is the national voice for the 188 adults' and children's
hospices run by local charities (known as "independent"
hospices). These provide 72 per cent of UK specialist inpatient
palliative care, as well as many community and day care services.
2. In his memorandum of 22 October 2003
Lord Joffé requested that a Select Committee give consideration
to seven key issues. Help the Hospices focused its consultation
around those aspects that staff in independent hospices are, through
experience, uniquely well qualified to address:
(i) Whether palliative care can in all cases
provide the care that will enable terminally ill patients to die
with dignity, and free of unnecessary suffering.
(ii) Whether the safeguards in the Bill,
intended to protect vulnerable members of society, are adequate.
(iii) The effect on patients, health staff
and the families of patients were the Bill to become law.
(iv) The different views within the professions
involved in providing palliative care.
3. Using convenience and purposive sampling,
Help the Hospices consulted 69 specialist palliative care staff
via interviews and regional focus groups (Scotland, Wales, South
East of England and North of England). The interviews were conducted
at the outset of the consultation to inform research design and
supply qualitative data. Many staff attending focus groups elicited
colleagues' views and presented these on their behalf.
4. The focus group sample included 10 specialist
palliative care physicians, 34 specialist nursing staff including
community nurse specialists, two physiotherapists, one occupational
therapist, five social workers, six chaplains, one volunteer,
one counsellor and two management professionals drawn from 29
independent hospices. About half of staff in the sample currently
occupy leadership roles: of this fraction three were chief executives
or equivalent, 11 were directors of services (clinical, medical
or nursing) and the remainder were multi-disciplinary team leaders
or team leaders in their specialty.
5. Focus groups used a modified nominal
group technique. Participants identified all likely opinions of
those working in and using hospices. Respondents subsequently
recorded their own views in writing. It was thus possible to survey
the totality of views and also to permit minority opinions to
be expressed in confidence without fear of conflict.
6. Within the timeframe set by the Committee,
it was not possible to elicit hospice users' views.
7. It is emphasised that focus groups
were not scientifically selected but, of necessity, consisted
of hospice staff able to attend. Help the Hospices is confident
it has captured the range of views held by hospice staff and some
indication of their prevalence. However, the frequency with which
views are held across independent hospices cannot reliably be
extrapolated from these data. In order to discourage undue weight
being placed upon frequency indicators, data are reported below
using approximate fractions rather than percentages.
8. The independent hospice movement pioneered
specialist palliative care and continues to lead its development.
Respondents emphasised hospice care's holistic principles: respecting
the physical, emotional, and spiritual needs of whole persons.
They also emphasised respect for autonomy. However, consideration
of patient needs alongside respect for autonomy generated differing
assessments of the impact of euthanasia on the exercise of autonomy
Approaches to moral reasoning
9. About one half of respondents cited Christian
belief as relevant to their view on euthanasia.
10. Many respondents urged attention to
the moral distinction between factual and normative propositions.
Regarding euthanasia as morally wrong, they argued that the extent
to which palliative care could relieve suffering was not relevant
to the moral status of euthanasia.
11. Those indicating support for the introduction
of euthanasia cited respect for autonomy as a foundational rationale
and/or indicated they believed euthanasia to be right by reason
of unbearable suffering.
12. Respondents differentiated between moral
and ethical beliefs. About one half indicated they believed euthanasia
to be morally wrong, with the remainder indicating it was either
not a moral issue or morally right. However, two thirds of respondents
indicated they believed it unethical for health care professionals
to provide assistance to die. One third of respondents indicated
they would treat assisting death as an ethical obligation.
13. For some respondents, respecting autonomy
in the context of holistic care entailed accepting euthanasia.
They reasoned that where patients concluded that euthanasia was
in their best interests, they were entitled to seek others' assistance
14. For other respondents, respecting autonomy
in caring for the terminally ill entailed rejecting euthanasia.
They viewed autonomy as context-dependent, arguing that some decisions
are meaningful only if social structures facilitate their implementation.
They reasoned that introducing euthanasia would change the landscape
of palliative care in ways that denied patients resources and
choices. For instance they anticipate that the availability of
euthanasia would reinforce in elderly patients the belief that
they are less deserving of care than the young; that patients
may choose euthanasia in order to not to impose emotional or financial
burdens on carers; and generally, as euthanasia became more socially
acceptable, lingering death would become less so. Respecting the
autonomy of those seeking euthanasia may thus ultimately inhibit
the exercise of autonomy in others.
Moral rights and duties
15. Questionnaire responses implied three
views on the relationship between patients' desire to die and
others' duty to assist. About one third regarded the creation
of a patient's right to euthanasia as entailing a corollary duty
on health care professionals to assist. About one third treated
euthanasia as a freedom independent of corollary duty, so although
a patient might seek euthanasia it would remain unethical for
medical professionals to provide it. About one third of respondents
viewed euthanasia as an impermissible moral choice that society
should neither permit nor assist.
16. Respondents noted that the Bill does
not create a duty in organisations to provide euthanasia, and
that some hospices might decline to do so.
17. The high standard of hospice care is
founded on integrated multi-disciplinary working. Irrespective
of moral belief, almost all respondents expressed considerable
concern about the impact on multi-disciplinary working of introducing
euthanasia. They feared patient care could be compromised, and
the hospice movement weakened, through conflict arising from differing
ethical beliefs and the exercise by some professionals of their
right of conscientious objection.
18. Some respondents argued that the Bill's
focus on physician decisions was inappropriate. Staff in multi-disciplinary
teams may possess more knowledge and expertise than attending
or consulting physicians. (Where palliative care is provided in
the home, for example, attending physicians may be General Practitioners
with limited knowledge of palliative care, whilst "attending
nurses" would be palliative care specialists.) Moreover,
patients and families often develop more intimate relationships
with nursing and other staff.
A safe haven?
19. Many respondents suggested the introduction
of euthanasia would deny patients the sense of sanctuary hospice
care currently offers and compromise the relationship of trust
between physicians and patients. However, a minority argued that
better communication between professionals and patients would
result from implementing the Bill.
20. One fifth of respondents indicated they
would find euthanasia more acceptable if the physician assisting
death were not the attending physician. One fifth of respondents
indicated euthanasia would be more acceptable if assisted deaths
took place outside hospices, for example in patients' homes.
21. Anxieties remain that should hospices
carry out euthanasia this will have a significant negative effect
on fundraising. At present hospices provide 72 per cent of in
patient palliative care, levying no charge on patients and receiving
less than 50 per cent of their income from public funds.
22. Respondents selected from five answers
to the question: "In your professional experience can palliative
care in all cases provide the care which will enable terminally
ill patients to die with dignity and free of unnecessary suffering?"
The alternative answers expressed the range of views derived from
interviews with hospice staff:
(i) No respondent selected the unqualified
(ii) Just over one third of respondents selected
EITHER "Yes in principle, but good palliative care is not
universally available" OR "Yes, but only using deep
(iii) The remainder, just under two thirds
of respondents, selected EITHER "No, because we cannot fully
control pain and/or the terminal stages can be undignified"
OR "No, because some patients wish to control the time and
manner of death and this is not a medical issue".
(iv) Because the "no" answer rationales
are logically inconsistent with a "yes" response to
the question, checking both "yes" and "no"
alternatives was recorded as a "no" response.
23. Of the two thirds of respondents who
indicated that palliative care could NOT supply relief a majority
(about two thirds) ALSO checked a box indicating they believed
providing assistance to die was inconsistent with their ethical
obligations. For the one third of respondents who believed palliative
care COULD provide relief it was not axiomatic that euthanasia
was therefore wrong. Of these respondents, about one half identified
assisted dying as either morally neutral or morally right, although
a clear majority also believed it would be unethical to themselves
24. About three quarters of respondents
had experienced a patient request to die. Data do not indicate
whether these were persistent requests or statements of distress.
25. Respondents gave detailed consideration
to the practical implications of the Bill's implementation.
The hospice context and issues of competence
26. Most hospice in-patients are in terminal
stages of cancer. Average length of stay is 13 days, with implications
for the Bill's operation in hospices.
27. Many of the decisional stages envisaged
in the Bill raise problems regarding competence in terminally
(i) Anxiety, depression, and cognitive deterioration
can make determining competence in terminally ill patients particularly
(ii) Competence often fluctuates during terminal
stages, so patients may be competent for one stage in the process
the Bill provides, but not another.
(iii) Symptom control (eg use of psychotropics)
often adversely affects competence.
(iv) Patients may be competent but unable
to communicate their wishes.
28. Whilst the Bill anticipates it will
be patients who initiate requests to die, some respondents reasoned
it would become an ethical obligation to inform patients of their
right to euthanasia. The average length of hospice stay, together
with the required waiting period, would mean discussion of euthanasia
would have to be initiated promptly. Respondents expressed concern
that distressed patients and families would be compelled to consider
euthanasia early in admission; but feared that if this was not
done, some would object they had been denied information.
Respondents pointed out that many patients enter
hospice fearful that death may be hastened by medical intervention.
If hospices were required to initiate discussion of euthanasia
these patients would cease to perceive them as safe havens.
29. Respondents envisaged difficulty in
determining what constituted a request to die such that the 14
day waiting period clearly "started to run". Patients
raise euthanasia for varied reasons, including acknowledging impending
death, encountering a setting where they may voice fears, or seeking
reassurance. There was concern that such statements would have
to be treated by staff as the first stage in a legal process rather
than a trigger for psychological support; and that patients might
feel inhibited from expressing their feelings in case this was
interpreted as a request for euthanasia.
30. Respondents pointed to patients' complex
responses to the experience of terminal illness, Patients frequently
experience feelings of hopelessness, when desire for death may
be expressed; but these feelings are accompanied or superseded
by unanticipated enjoyment of remaining periods of life.
Determinations of attending and consulting physicians
31. Difficulties in assessing competence
have been set out above. It was argued that further clarification
was required in relation to the rights of competent, terminally
32. Informed decision making presents several
(i) Respondents urged attention to the lived
experience of pain. They argued that experience of effective pain
control is radically different from the promise of pain control,
and cessation of pain almost unimaginable if symptom control has
been poor. On this view, patients seeking assistance to die without
having experienced good symptom control could not be deemed fully
(ii) Respondents were concerned that the
most vulnerable patientsvery elderly, very ill or from
deprived backgroundsmay have limited capability to process
complex information about the course of their illness and treatment
(iii) Terminal illnesses have differing trajectories,
with some less predictable than others. As the course of a terminal
illness decreases in predictability, increasingly complex information
about symptoms, their management, and possible side effects, is
required. Respondents argued it thus becomes correspondingly problematic
to assess a patient as fully informed about treatment options.
(iv) Respondents acknowledged that medical
staff intentionally or inadvertently exert influence on decision-making
through the way information is presented. It was emphasised that
to make informed choices, patients will require clear, neutral
communication from carers, and ready access to intelligible information.
(v) The influence of family members and the
availability of social support were regarded by many respondents
as significant in determining how truly voluntary a request could
33. Respondents indicated potential confusion
around physicians' roles in determining unbearable suffering.
The Bill appears to define it as a subjective assessment by the
patient. However, Ss 2(2)(d) and 2(3)(d) require that two physicians
concur in finding that the patient is suffering unbearably. Some
respondents concluded the Bill accorded precedence to the patient's
view alone. Others concluded that if the physician was required
to consider the patient's point of view, s/he may reasonably disagree
34. Some respondents argued that where a
physician is to conclude that a patient is suffering unbearably
"as a result of that terminal illness" all palliative
care options must first be exhausted. Further to this, a minority
proposed that where patients are fully sedated, suffering is not
unbearable. On this view, euthanasia as a "treatment of last
resort" is never necessary.
35. To the extent that unbearable suffering
is determined by clinical staff, respondents argued that multi-disciplinary
teams are better placed to assess this than physicians alone.
36. Many respondents were concerned about the
loose definition of terminal illness, contending that physician's
prognoses are frequently over-optimistic.
37. Respondents expressed concern that the consulting
physician may not necessarily have expertise in palliative care.
As with an attending physician who is not a palliative care specialist,
s/he may not be qualified to conclude the patient was well-informed
about palliative care options as the Bill requires (Ss 2(2)(e)(iv),
2(2)(f), 2(3)(e) and 2(3)(f)) or to give the patient information.
38. To the extent that referral to the consulting
physician was intended as a safeguard there was anxiety around
the scope for collusion, with patients referred to colleagues
known either to favour or disfavour euthanasia. Conversely, it
was unclear what would happen where the consulting and attending
physicians disagreed, and whether this might lead to "opinion
39. Many respondents, irrespective of their
own moral views, commented that if a patient were suffering unbearably,
and euthanasia were a treatment option, the 14-day waiting period
40. Respondents argued that only a psychiatrist
with specialist knowledge of mental states in terminal illness
would be qualified to determine the issue of competence.
41. Respondents expressed concern that once
a patient was on the "assisted dying track", attention
would be deflected from seeking and providing the best palliative
care. Were it necessary to maintain patient competence throughout
the process, symptom control could be compromised through excluding
treatments adversely affecting competence.
Legal and lay witnesses
42. Respondents questioned whetherin
anything but straightforward casesa solicitor or lay witness
could affirm that patients were of "sound mind". Terminally
ill patients' fluctuating competence, and the impact of medication,
again raised concern.
43. Doubt arose whether legal or lay witnesses
could determine that decisions were truly voluntary, particularly
where patients saw themselves as burdens on carers and family.
44. Given the restricted classes, finding
suitable lay witnesses was thought to present difficulty. It was
argued that lay witnesses were expected to discharge an onerous
task particularly where there may be differences among family
45. On current wording, it is unclear whether
hospice volunteers could act as lay witnesses.
46. It is unclear what consequences would
flow should witnesses revise their view on whether patients were
of sound mind, or their decisions voluntary, subsequent to signing
47. Respondents expressed concern that the
Bill does not stipulate that patients be competent when advised
of the right to revoke. As S 2 and S 3 operate as qualifying conditions
for S 4, assistance to die may apparently be provided where a
patient becomes incompetent after completion of the declaration;
and is therefore incapable of understanding, or exercising, their
right to revoke.
48. Respondents suggested that patients
may find it difficult to assert a change of mind at this stage,
in the face of the emotional and practical investments made by
carers and family.
49. Some respondents expressed concern that
revocation appears to be "once and for all". They wondered
how flexible patients could be in choosing the moment of death
or whether a request to postpone the time of death would be deemed
a revocation. Some speculated that if the declaration operated
flexibly it might function as an "insurance policy"
for patients. Patients might be supported to die naturally because
they had the "reassurance" of being able to seek assistance
should they need it.
50. Respondents suggested that permitting
the attending physician to act alone at the final stage, with
no witnesses present to observe dealings with the patient, raised
problems of accountability.
51. Difficulties may arise where euthanasia
is inconsistent with hospice charitable objects, and memoranda
and articles of association.
32 Paul Glare, Kiran Virik, Mark Jones, Malcolm Hudson,
Steffen Eychmuller, John Simes and Nicholas Christakis "A
systematic review of physicians' survival predictions in terminally
ill cancer patients" BMJ, Jul 2003; 327: 195-0. Back