Memorandum by CARE
1. INTRODUCTION
1.1 CARE is a supporter-based Christian
charity incorporating more than 160 pregnancy crisis centres,
fostering and remand fostering initiatives and day care for people
with learning disabilities. In addition to social care and educational
programmes, CARE undertakes research and lobbying on associated
issues in the parliaments and assemblies of the United Kingdom,
European Union and United Nations.
1.2 CARE welcomes this opportunity to make
a contribution to the work of the Select Committee on the Assisted
Dying for the Terminally Ill Bill ("the Committee"),
and is grateful for the time given by the Committee to consultation
with the public and other interested groups.
1.3 CARE's 100,000 supporters have been
interested in the issue of terminal care management for over 20
years and on their behalf, CARE's Public Policy team has submitted
evidence to a large number of committees considering the issue.
These included the House of Lords Select Committee on Medical
Ethics and inquiries by the Law Commission into Mental Incapacity.
1.4 CARE has regularly tested its members'
views on key issues such as the withholding and withdrawal of
treatment and the use of "advance declarations". Their
views remain strongly opposed to any change in law that would
weaken the prohibition of intentional killing or permit doctors
and nurses to assist in shortening the life of patients.
1.5 The wider issues surrounding euthanasia
have been debated at length in a variety of contexts, including
the House of Lords Select Committee on Medical Ethics. We take
it as axiomatic that the legalisation of euthanasia or assisted
suicide would fundamentally alter the ethos of medical care, undermine
the trust that elderly, disabled and terminally ill patients can
vest in medical professionals and lead to pressure on vulnerable
patients to consider ending their lives when they would otherwise
take advantage of legitimate healthcare options. We do not intend
to rehearse those arguments at length, but will limit our comments
to the provisions of the Assisted Dying for the Terminally Ill
Bill itself.
2. GENERAL COMMENTS
2.1 CARE is opposed to the Assisted Dying
for the Terminally Ill Bill as it permits voluntary euthanasia,
that is the intentional killing of a patient by act or omission
as part of their medical care.
2.2 CARE holds that no new evidence has
been brought forward which should undermine the work, report and
considered conclusions of the House of Lords Select Committee
on Medical Ethics. Their findings included the following:[56]
— There should be no change in law
to permit euthanasia (Recommendation 278).
— We strongly endorse the right of
the competent patient to refuse any medical treatment (Recommendation
279).
— We do not recommend the creation
of a new offence of mercy killing (Recommendation 293).
— We recommend no change in law on
assisted suicide (Recommendation 295).
2.3 CARE recommends that the Committee reject
the Bill, which is flawed in principle, drafting and practice.
Nor do we consider that the legislation could be so improved as
to make it either desirable or safe for the terminally ill, disabled
or mentally incapacitated.
2.4 We observe that current legislation
provides an effective framework for handling end of life issues.
3. COMMENTS ON
CLAUSES OF
THE BILL
The long title of the Bill
The long title of the Bill suggests that it
is intended to "enable a competent adult who is suffering
unbearably as a result of terminal illness to receive medical
assistance to die at his own considered and persistent request;
and to make provision for a person suffering from a terminal illness
to receive pain relief medication."
CARE believes that the phrase, "to make
provision for a person suffering from a terminal illness to receive
pain relief medication" is misleading. Although Clause 3
requires that a specialist in palliative care has attended the
patient to discuss the option, the Bill establishes nothing in
this regard that is not already common medical practice in the
United Kingdom.
CARE holds that the phrase "medical assistance
to die" is also disingenuous. Under the definitions of the
Bill, "assisted dying" can and would include the actual
killing of a patient as opposed to assisted suicide or assisted
death. While the Bill and its language seek to give the impression
that the aim of the legislation is to allow clinicians to help
patients through the natural process of death, it is clear that
the Bill deals with the assisting of suicide or purposefully killing.
Clause 1 (Authorisation of Assisted Dying)
Clause 1 of the Bill provides that "subject
to the provisions of this Act, it shall be lawful for a physician
to assist a patient who is a qualifying patient, and who has made
a declaration in accordance with this Act that is for the time
being in force, to die."[57]
CARE contends that the Bill establishes an exception
to the offence of intentional killing. Under the Bill, a doctor
can end the life of his or her patient, albeit under specific
circumstances, and not be prosecuted for that action.
With this in mind, CARE refers the committee
to the report of the Medical Ethics Select Committee 1994 and
their findings relating to the legal prohibition on intentional
killing:
(a) Belief in the special worth of human
life is at the heart of civilised society. It is the fundamental
value on which all others are based, and it is the foundation
of both law and medical practice. The intentional taking of human
life is therefore the offence which society condemns most strongly.
(Paragraph 34)
(b) The prohibition [of intentional killing]
is the cornerstone of the law and social relationships. It protects
each of us impartially, embodying the belief that all are equal.
We do not wish that protection to be diminished and we therefore
recommend that there should be no change in the law to permit
euthanasia. We acknowledge that there are individual cases in
which euthanasia may be seen by some to be appropriate. But individual
cases cannot reasonably establish the foundation of a policy which
would have serious and widespread repercussions. Moreover, dying
is not only a personal or individual affair. The death of a person
affects the lives of others, often in ways and to an extent which
cannot be foreseen. We believe that the issue of euthanasia is
one in which the interests of the individual cannot be separated
from the interest of society as a whole. (Paragraph 237)
(c) . . . issues of life and death do not
lend themselves to clear definition, and without that it would
not be possible to frame adequate safeguards against non-voluntary
euthanasia if voluntary euthanasia were to be legalised. (Paragraph
238)
(d) As far as assisted suicide is concerned,
we see no reason to recommend any change in the law. We identify
no circumstances in which assisted suicide should be permitted,
nor do we see any reason to distinguish between the act of a doctor
or any other person in this connection. (Paragraph 262)
CARE argues, in line with the findings of the
Medical Ethics Select Committee and of other previous select committees,
that the prohibition on intentional killing should not be weakened
by the legalisation of assisted suicide. It would be impossible
to establish sufficient checks for it to be safe to allow doctors
to be treated differently in this connection.
Clause 2 (Qualifying Conditions)
Clause 2 establishes a number of conditions
that must be met before the attending physicians should be able
to allow the patient to die. It is CARE's view that the clause
represents a number of potential difficulties.
Clause 2 (2a) requires that the patient
shall have informed the attending physician that he or she wishes
to die. The clause does not stipulate what should constitute a
request to be assisted to die, thereby beginning the process given
under the Bill. Presumably, a request made when the patient is
suffering from pain or distress that could be relieved through
appropriate palliative care would qualify.
CARE believes that this would potentially set
the patient on a course resulting in euthanasia and limit the
potential for legitimate health care options.
Clause 2 (2b) stipulates that the attending
physician consider the patient's medical records and establish
that there is no reason to believe that the patient is incompetent,
where "incompetent" means not having the capacity to
make an informed decision. CARE believes that there are a variety
of problems with this condition:
— The definition of incompetence is
vague. CARE does not believe that the clause is fit for any objective
criteria for establishing competence and, moreover, would argue
that the desire to end one's own life could potentially be an
indication of mental incompetence.
— The physician, who must only be a
registered medical practitioner, may not have the aptitude or
expertise to establish that the patient is or is not competent.
— This provision creates a clear potential
for "doctor shopping" where patients who are denied
a request on the grounds on mental incompetence would seek to
be treated by a doctor more likely to agree to his request.
— CARE suggests that the Committee
should seriously consider the implications of the Bill that establishes
euthanasia as a normal part of medical treatment if the Mental
Capacity Bill should become law, particularly if proxy decision
makers would be able to request the active commission of euthanasia
on behalf of a patient without capacity, and whether this could
be considered to be in the patient's best interests.[58]
Clause 2 (2c) states that the attending
physician should have made the determination that the patient
has a terminal illness, where terminal illness means an illness
which in the opinion of the consulting physician is inevitably
progressive and which will result in the patient's death within
a few months at the most.
CARE believes that the definition of terminal
illness, which relies on the opinion of the consulting physician
of death within a few months, is unavoidably subjective and indefinite.
Given the wilfully imprecise nature of this definition, it would
be very difficult to determine which patients would not meet the
qualifying conditions.
Clause 2 (2d) stipulates that the attending
physician must have concluded that the patient is suffering unbearably,
where unbearable suffering means suffering by reason of pain or
otherwise which the patient finds so severe as to be unacceptable
and results from the patient's terminal illness.
Again, CARE holds that this provision would
be impossible to apply in practice—does it relate to physical
suffering or mental and emotional suffering also? Does it apply
when appropriate palliative care is in place or when it is withheld?
Clearly, the Clause would not preclude "perceived" suffering,
such as frustration over the loss of movement.
Indeed, "suffering" and "pain"
are complex terms, subjectively felt within a network of different
factors—not all are physical but some are social, mental,
or spiritual. The decision cannot be made by the attending physician,
or perhaps even by the patient. The decision can also change over
time, stages of illness and depending on the treatment available.
Clause 2 (2e) requires that the attending
physician inform the patient of his medical diagnosis, prognosis,
the process of being assisted to die and the alternatives to assisted
dying.
CARE argues that the patient's continuing decision
will depend much on how the patient is informed of these factors,
not just that they are informed. The process then is open to considerable
abuse, and patients may be given information or medical advice
that is "leading" or unsympathetic to their values.
Clause 3 (Offer of palliative care)
Clause 3 is superfluous, and seems to be intended
to divert attention from the genuine objective of the Bill.
CARE is also concerned that the Bill in general
takes a tick-box approach to palliative care. Patients may be
made aware of its availability, but may not be aware of its potential
in relieving pain and maintaining quality of life.
Clause 4 (Declaration made in advance)
CARE believes that there are considerable problems,
particularly with the witnessing provisions of the Clause. For
example, the solicitor must ascertain that the patient is of sound
mind and has made the decision voluntarily—again, it is
questionable that he or she would be able to make this judgement.
Furthermore, it is unclear who will be able
to perform as the second witness. Neither the attending physician,
consulting physician, psychiatrist, member of the medical care
team, relative or partner may serve as the second witness.
CARE recognises that this is intended to reduce
the potential of abuse, but argue that it is ineffective. Indeed,
it seems that the second witness would provide no check against
abuse, given that it would potentially be someone who is not familiar
with the patient or his or her illness and would, again, be unqualified
to judge whether the patient is competent, understands the implication
of his or her decision and, furthermore, has made the decision
voluntarily.
No provision is made in the Bill for witnessing
third parties (ie, consulting physicians, witnesses) to actively
prevent the process of euthanasia if they believe that the patient's
request for assisted death is involuntary.
Clause 5 (Further duties of attending physician)
Clause 5 sets out further duties for the attending
physician, including the need to inform the patient of his right
to revoke the declaration. However, the Bill does not deal with
the question of what status the declaration should have should
the patient lose his or her ability to revoke the declaration
or his become mentally incapacitated or unable to communicate
their a desire to revoke the declaration during that time. Indeed,
it seems that it would remain in force. Clause 5, therefore, represents
an inadequate safeguard against abuse.
Clause 6 (Revocation of declaration)
Clause 6 stipulates that a patient may revoke
a declaration without regard to physical or mental state.
Again, CARE argues that the clause offers insufficient
safeguards, as a patient may well lose the actual physical capacity
to revoke a declaration and to communicate that decision effectively
(a definition of capacity within the Mental Capacity Bill). Moreover,
that patient may be able to revoke the declaration without regard
to his mental state, but he may become unaware of his previous
decision and of its significance.[59]
Clause 7 (Duties of physicians, and conscientious
objections)
Clause 7 provides that no person is under a
duty to, whether by contract or by any statutory or other legal
requirement, to participate in any diagnosis, treatment or other
action authorised by the Bill to which he has a conscientious
objection.
CARE argues that the clause is ineffective,
since there is an obligation to become materially involved in
a process of referral. It is both illogical and unreasonable to
conclude that a physician whose conscience would be violated by
performing or participating in assisted dying or voluntary euthanasia
would then be content with passing his patient to a doctor who
will commit euthanasia.
Clause 8 (Psychiatric referral)
Clause 8 provides that physicians who believe
that the patient may be incompetent must make a referral to a
psychiatrist.
CARE is concerned about the limited nature of
the provision and that a referral to a psychiatrist is not an
integral part of establishing competency on the part of the patient.
It is also unclear why the attending and consulting physician
can take the view that a patient is not incompetent (as in Clause
2 (2b)) but is deemed incapable, and must seek the psychiatric
referral, if finding the patient incompetent. In other words,
a higher standard of evidence is required to establish that the
patient should not receive assistance to die than to establish
that he meets the qualifying conditions. We fear that this may
create a situation where it is easier for a doctor to carry out
euthanasia than it is to withhold it.
Furthermore, the psychiatrist may only give
a narrow determination (that the patient is not suffering from
a psychiatric or psychological disorder causing impaired judgement)
and thus presents a very low hurdle taking no account a variety
of subtle judgements that a psychiatrist could make.
This clause, like others, would leave no room
for objective definition. What can be considered a psychiatric
or psychological disorder causing impaired judgement?
Clause 9 (Notification of next of kin)
Clause 9 establishes that the attending physician
shall recommend that the patient informs his or her next of kin
of the request for assistance to die.
CARE expresses surprise that there is only a
requirement to recommend that the patient informs his or her next
of kin, and that there is not an absolute requirement that the
next of kin be notified.
The implications for third parties are clearly
worrying. Firstly, it may be the case that third parties such
as family members hold information relating to specific qualifying
conditions which the attending and consulting physicians do not
(ie, evidence of mental incapacity). Secondly, a close relative
or carer may, for instance, return from holiday to discover that
a terminally ill loved one had received assistance to die.
Again, CARE draws the attention of the committee
to the conclusions of the Medical Ethics Select Committee, which
found that "dying is not only a personal or individual
affair". CARE is surprised at the extent to
which absolute autonomy is placed at the heart of the Bill, and
while there is a clear need to respect and defend the principle
patient autonomy we argue that we must also establish limits where
choice affects and impacts upon third parties and society at large.
Clause 10 (Protection for physicians and other
medical personnel)
Clause 10 establishes protection for physicians
and other medical personnel who have acted in good faith in accordance
with the Act.
We are concerned that the clause establishes
a "good faith" defence where euthanasia has been committed
outside the conditions of the Bill, increasing the potential for
abuse.
Clause 12 (Insurance)
Clause 12 requires that no insurance policy
that has been in force for 12 months or more shall be invalidated
by reason of a doctor having assisted a qualifying patient die
in accordance with the Act.
CARE argues that the clause provides further
opportunity for abuse of the patient. His or her death presents
potential for pecuniary gain for third parties.
Even if third parties do not seek to persuade
the patient to request assistance to die the potential to benefit
third parties may convince a patient to request assisted suicide
where they would not in other circumstances.
Clause 14
Clause 14 establishes a monitoring commission
that will monitor the workings of the Act and all medical practitioners
who have assisted a patient to die will forward all medical records
for consideration by the three Commissioners.
The commission shall receive the medical files
and consider if the qualifying conditions have been met. If they
believe that they have not, they shall refer the matter to the
coroner (or procurator fiscal in Scotland) for further investigation.
CARE notes that the requirement to report to
the monitoring commission in the Netherlands, where doctors complained
that they were forced to criminalize themselves by reporting to
the Commission, created an impetus towards full legalization of
euthanasia.
Clause 15 (Administration of drugs to patients
suffering severe distress)
Clause 15 gives that a patient suffering from
a terminal illness shall be entitled to request and receive such
medical treatment as may be necessary to keep him as far as possible
from pain and distress.
Again, CARE argues that the clause is superfluous
and establishes nothing that is not already an accepted part of
medical practice. For instance, in the so-called "Lindsell
Case" of 1997 the legal principle that patients are entitled
to medical relief from pain and distress under existing legislation
was established.
4. CONCLUDING
REMARKS
4.1 CARE is grateful for the time given
by the Committee to consultation with the public and other interested
groups.
4.2 CARE would be opposed to the introduction
of assisted suicide or euthanasia. It would threaten legal and
clinical safeguards for vulnerable patients such as the terminally
ill, mentally incapacitated and disabled.
4.3 We see no reason why the considered
conclusions of the Medical Ethics Select Committee of 1994 should
be challenged. No new evidence or factors have come to light that
would substantially dispute their findings and the law has been
periodically tested in the courts.
4.4 We consider that the problems presented
by the clauses of the Assisted Dying for the Terminally Ill Bill
are indicative of the dangers of weakening the law on intentional
killing and of the clinical risks that would accrue to such changes.
We do not believe that it is possible to improve or amend the
Bill to make it either ethically acceptable or safe for patients.
4.5 Of particular concern to us is the interplay
between such a Bill as the Assisted Dying for the Terminally Ill
Bill and the upcoming Mental Capacity Bill. We strongly suggest
that the Committee consider the impact of the Bills in tandem.
4.6 We urge the committee to reject the
Bill and to prevent its progress to further stages.
August 2004
56 Page 58, House of Lords Report of the Select Committee
on Medical Ethics, Vol 1. Back
57
Assisted dying is defined as providing the patient with the means
to end the patient's life or, if the patient is physically unable
to do so, ending the patient's life. Back
58
Clause 1(5) of the Mental Incapacity Bill establishes that "an
act done, or decision made, under this Act for or on behalf of
a person who lacks capacity must be done, or made, in his best
interests. Clause 4(1) of that Bill states that the person making
the determination on best interests must consider "all the
circumstances appearing to him to be relevant", while Clause
4(2)-(6) establish a number of particular factors, such as "beliefs
and values" that would influence decisions, or "past
and present wishes or feelings". Back
59
The ability to retain information is another possible criteria
for mental capacity, given under Clause 3 of the Mental Capacity
Bill. Back
| 
