13.Joint memorandum by the Catholic Bishops'
Conference of England and Wales and the Linacre Centre for Healthcare
Ethics (MIB 1001)
INTRODUCTION
1. We[1]
welcome the opportunity to comment on the Draft Mental Incapacity
Bill which the Government has proposed. In so doing, we focus
on health-related issues: we do not comment on the Draft Bill's
provisions on financial matters, which may indeed be useful in
protecting the interests of those with mental incapacity. In contrast,
we believe that the provisions of the Bill relating to health,
while these may be similarly well-intentioned, will in fact exacerbate
threats to the lives and health of mentally incapacitated people.
2. There are four points we wish to make
briefly:
A. lack of effective safeguards against suicide
and homicide by omission;
B. weakness in the definition of "best
interests";
C. dangers in the proposed scheme for proxy
decision making; and
D. dangers inherent in enforcing advance
directives in the manner proposed.
A. LACK OF
EFFECTIVE SAFEGUARDS
AGAINST SUICIDE
AND HOMICIDE
BY OMISSION
3. Existing case-law already permits patients
in a persistent vegetative state to have "treatment"
(including tube-feeding) withheld with the aim of causing death.
[2]In
permitting omissions, though not actions, with a homicidal purpose,
the law has been left, in the words of one Law Lord, in a "morally
and intellectually misshapen state".[3]
The Draft Bill does nothing to reverse this unfortunate situation;
nor does it stipulate that life-sustaining measures may not be
withheld from non-P VS patients with the aim of causing death.
The Bill does not distinguish between choices on the part of doctors,
patients or proxies with the aim of causing death and choices
with the aim of avoiding the burden of certain interventions.
Rather, in emphasising the need to respect the patient's past
"wishes and feelings"—whatever (it appears) they
may be—the Bill would apparently require doctors to respect
advance refusals which are suicidally motivated; ie, where the
patient's aim was to end a life predicted to be not worth living.
Indeed, the Bill would apparently permit doctors intentionally
to assist such a suicidal refusal. Similarly, proxies who wish
to end the patient's life—whether for the patient's sake
or for their own—will evidently have full power to do this,
on claiming this is what the patient wanted. [4]It
is the doctor who seeks to override a suicidal or homicidal refusal
(and so protect the patient from death or disability) who would
seem to be made liable to criminal proceedings.
4. We would urge that treatment should in
no case be withheld with the aim of causing death: this should
be a criminal offence whatever the patient's state of health.
[5]It
is important to recognize that proscribing choices made with the
aim of ending life would not commit anyone to pursuing or agreeing
to medical treatment which is futile or burdensome. What needs
to be stressed here is the key distinction between aiming to end
life (albeit by omission), and not aiming to prolong life by inappropriate
means.
B. WEAKNESS IN
THE DEFINITION
OF "BEST
INTERESTS"
5. We are alarmed by the reduction of the
patients' interests to subjective "wishes and feelings"
of the patient in clause 1.4. It is remarkable that the Draft
Bill makes no mention, in what it says about the patient's best
interests, of the interest in life and health. [6]While
not the only aspect of a person's welfare, life and health is
certainly one aspect, which traditionally the medical profession
has been committed to promoting. To ask doctors to ignore the
health interests of patients wherever the patient had, in the
past, some conflicting "wish or feeling" is to ask doctors
to abandon their traditional role in caring for incapacitated
people.
C. DANGERS IN
THE PROPOSED
SCHEME FOR
PROXY DECISION
MAKING
6. The Draft Bill gives significant powers
to proxy decision makers, and grants them legal status in the
context of health care. There are, however, risks in giving such
powers to those not medically qualified, who are not like doctors
held accountable for medical negligence, and who may even have
a conflict of interest such as a financial expectation on the
patient's death. As presently drafted, the Bill gives proxy decision
makers power without accountability. At the very least there needs
to be a prescribed duty of care and accountability in law for
decisions taken by the donee of a lasting power of attorney or
a deputy appointed by the court. The donee or deputy should be
required to give due weight to the patient's health interests,
and not simply to his or her desires at some earlier time. Furthermore,
in the case of a dispute between the donee or deputy and a doctor
there should be reference to a second independent medical opinion,
and if the matter still cannot be resolved, a reference to the
court.
D. DANGERS INHERENT
IN ENFORCING
ADVANCE DIRECTIVES
IN THE
MANNER PROPOSED
7. Competent patients do, of course, have
first responsibility for their own health: a responsibility which
extends a certain way into periods of incapacity. With regard
to advance refusals, there is no objection to doctors following
a refusal which is recent, well-informed and is not suicidally
motivated. However, the same cannot be said of a refusal which
is made on the basis of inadequate information and/or has the
aim of ending life. Those who are, or have been, suicidal need
to be treated in their objective interests, not to have their
lives ended out of 'respect' for their wish that this be done.
If patients, living as they do in a society which devalues the
lives of disabled people, act on the basis that such a life would
be worthless and should be curtailed, this is not an intention
which it is in their interests, or society's interests, to respect.
8. Advance refusals will often be ill-informed:
unlike the situation with contemporaneous refusals, the person
making the advance refusal may not have been offered any information
(for example, by a doctor) on what he or she is refusing. (In
particular, those refusing "treatment" may not realise
that tube-feeding is classed as treatment in the law.) The Bill
is vague on what is to count as an advance refusal, merely saying
that such a refusal may be expressed "in broad terms and
non-scientific language" [1.23(2 )]. [7]Previous
information from the Lord Chancellor's Department suggests that
even passing oral comments by the patient could have legal force.
[8](Certainly,
a proxy may refuse treatment on the basis of just such an informal
statement.) While wills disposing of a person's financial assets
rightly have a strict form, it is anomalous that advance refusals—which
may result in death or increased disability for the patient—could
be so vaguely specified and still be binding on doctors. In the
Bill, it seems that advance refusals are "valid unless proven
otherwise": in practice, the onus of proof will be on anyone
who wants to treat the patient to show that a purported refusal
is not, in fact, binding. For many patients, there will be no-one
to challenge the claim that a binding refusal has been made. [9]
9. In some cases, even a well-informed,
non-suicidal advance refusal should, in our view, be overridden,
though this would certainly be the exception. In particular, an
advance refusal of pain relief, hygienic care or feeding—whether
orally or by tube—should not bind absolutely. Patients should
be given a minimum level of care, both for their own sake and
for the sake of protecting an ethic of care on the part of doctors
and nurses. It needs to be stressed that incapacitated people
have objective health interests, which doctors and nurses should
be permitted to promote to a certain basic standard. No advance
directive, and no attorney or deputy, should have the power to
refuse such basic interventions in the patient's interest. This
should be stated on the face of the Bill.
September 2003
1 This Response has been prepared by Dr Helen Watt,
the Director of the Centre, in consultation with Professor Luke
Gormally, Senior Research Fellow at the Centre, and Professor
John Keown of the Kennedy Institute of Ethics. For a more detailed
account of our approach to healthcare decisions for the mentally
incapacitated, see John Keown and Luke Gormally, "Human
Dignity, Autonomy and Mentally Incapacitated Persons: A Critique
of Who Decides?" [1999] 4 Web Journal of Current Legal Issues,
at www.webicli.ncl,ac.uk'1 999/issue4 and the Linacre Centre Responses
to Who Decides and Making Decisions, at www.linacre.org. Back
2
See Airedale NHS Trust v Bland [1993] AC 789. Back
3
Bland [1993] AC 789 at 887, per Lord Mustill. Back
4
The Bill does contain a clause Ill. 31] on the mistreatment or
neglect of incapacitated people. However, by defining "best
interests" of the incapacitated person solely in relation
to that person's actual or hypothetical desires [1.4], the Bill,
in conjunction with existing case-law, would appear to allow proxies
to refuse treatment with a homicidal motive, providing the refusal
is defended in terms of such desires. We would urge that clause
1.31 proscribe any refusal of treatment or care which is based
on the aim of hastening death-whether this aim be that of the
carer, proxy and/or the patient at an earlier time. Back
5
See note 4. Back
6
This interest was strongly emphasised by Lord Brandon in Re F,
who held that treatment of noncompetent patients was in the best
interests of such patients only if "carried out in order
either to save their lives or to ensure improvement or prevent
deterioration in their physical or mental health" (Re F Fv
WestBerkshire Health Authority and Another [1989] 2 All ER 545,
at 546. Back
7
Any legislation on advance refusals of treatment should require
that these be well-documented, witnessed to by two witnesses without
a vested interest in the estate of the patient, based on accurate
medical information and motivated otherwise than by a desire to
end one's own life. In the current Bill, a paragraph to this effect
might be inserted to replace 1.23 (2), which is far too vague
in counting as valid refusals those "expressed in broad terms". Back
8
Making decisions: A guide for social care professionals, p.18. Back
9
We are also concerned that it will be difficult and time-consuming
for patients who have regained capacity to cancel an advance directive
or power of attorney (see Schedule 3, Part 4, 14: 1-2).
Given the life-and-death issues at stake, it should, at the very
least, be more difficult to make, than to cancel, such arrangements.
Moreover, the Bill makes no provision for patients without capacity
to show by their behaviour (signs of hunger, distress at a treatable
condition) that their wishes have changed.
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