CATHOLIC BISHOPS' CONFERENCE
OF ENGLAND AND WALES
5th September 2003
Dear Committee Members,
I am grateful to the Joint Committee for agreeing
to allow the Catholic Bishops'
Conference of England and Wales to submit written
evidence on the Draft Mental
Incapacity Bill a few days after your deadline.
You will find attached our detailed comments which
focus on the provisions of the
Bill relating to health. These have been prepared
by the Linacre Centre for Healthcare
Ethics and this submission is made jointly by it
and the Catholic Bishops' Conference
of England and Wales.
Our comments inevitably focus on what are serious
shortcomings in certain provisions of the Draft Bill. But at the
outset, I would wish to state our support for the government's
intention to produce new legislation in this area, although parts
of the current Draft Bill are seriously defective. For many years
the law on mental incapacity has been vague and unsatisfactory.
There is unquestionably a need to provide a comprehensive legal
framework both in the interests of protecting persons with severe
mental incapacity, and the families who have in many cases a life
long commitment to caring for or about the health and welfare
of their mentally disabled relatives.
In the attached submission we draw attention to four
areas of concern; lack of effective safeguards against suicide
and homicide by omission; weakness in the definition of 'best
interests'; dangers in the proposed scheme for proxy decision
making; and finally dangers inherent in enforcing advance directives
in the manner proposed.
It is very much to be hoped that the deficiencies
in the Draft Bill will be rectified so that the Bill presented
to Parliament will fully and effectively achieve the purpose of
protecting those with mental incapacity.
Archbishop Peter Smith
Chairman, Department for Christian Responsibility
and Citizenship, Bishops' Conference of England and Wales
Joint submission by the Catholic Bishops'
Conference of England and Wales and the Linacre Centre for Healthcare
Ethics to the Joint Committee on the Draft
1. We' 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
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' .~
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
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?'  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.
2 See Airedale NHS Trust
v Bland  AC 789.
~ Bland  AC
789 at 887, per Lord Mustill.
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; i.e., 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
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
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
6. The Draft Bill gives significant powers to proxy
decision makers, and grants them
~ 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.
~ See note 4.
6 This interest was strongly
emphasised by Lord Brandon in Re F, who held that treatment
of non-competent 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  2 All ER 545, at 546.
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
~ 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'.
~ Making decisions: A guide for social care
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.
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.