137.Memorandum from CARE (MIB 1176)
1.1 CARE is a charity representing over
100,000 Christian supporters from all denominations throughout
the UK. CARE's Public Policy Department acts as a think tank on
ethical issues in biology and medicine, as well as in education
and social issues. CARE also briefs supporters and Parliamentarians
as relevant issues are considered in Westminster, Brussels and
the devolved Parliaments and Assemblies.
CARE has been following the issue of Mental
Incapacity since the original Law Society discussion document
of January 1989 and the subsequent Law Commission Consultation
Paper of April 1991. Since then CARE has regularly submitted written
evidence and discussed these matters at meetings with officials
and Ministers. CARE has been a participant at recent seminars
at the Lord Chancellors Department. In addition, CARE has made
submissions at a number of previous stages in the process which
has led to this consultation, most recently in June 2002 on the
guidance leaflets which were "setting the scene for new legislation".
This reply is not confidential.
2. GENERAL COMMENTS
2.1 CARE recognises that there are deficiencies
and problems with the current legal framework and acknowledges
the substantial work undertaken by the Department for Constitutional
Affairs and its predecessor in considering some of these issues.
CARE believes that persons who lack capacity are disadvantaged
and vulnerable, and deserve the highest level of protection and
support which an advanced society can give to them.
2.2 CARE acknowledges the differing pieces
of historic legislation currently applied to these issues and
recognises that an overall, rather than a piecemeal approach,
would be of benefit. However, any new procedures should be flexible,
easy to use and financially beneficial while providing strong
safeguards for the more vulnerable members of society.
3. ADVANCE DECISIONS
3.1 CARE wants to involve patients in decisions
about their own healthcare as much as possible, and therefore
supports the principle of advance directives to the extent that
they can extend patient involvement into decisions after the onset
of incapacity. However there are dangers in the "piece of
paper" approach. By the time an individual's incapacity triggers
an advance directive, the situation may not be precisely what
was envisaged, new treatments may have come into being, and most
important of all, the healthy do not make their choices about
healthcare in the same way as the sick. Health professionals cannot
know whether the individual might have "changed their mind",
and as capacity is required to revoke an advance decision, the
incapacitated person is trapped in the consequences of a previous
decision. Advance decisions will force doctors and nurses to practise
with one hand tied behind their backs, and should not be given
the further force of statute law.
3.2 CARE has a second area of concernthe
possibility of advance directives, which have statutory force,
becoming a back door route into euthanasia. Advance directives,
while having some force in law, cannot be used to force a doctor
to do something which would otherwise be unlawful. However the
worldwide euthanasia movement has been at the forefront of promoting
the use of advance directives. For some who support euthanasia,
the acceptance of such documents in statute law, complete with
a request for the withdrawal of nutrition and hydration, are an
essential step in the campaign to change the law. CARE is concerned
that such slow deaths could be enforced under the proposed legislation,
under the terms of certain advance directives, or at the order
of the donee of an LPA.
3.3 The House of Lords Select Committee
on Medical Ethics reporting in 1994 opposed giving advance decisions
greater legal force as this would risk "depriving patients
of the benefit of the doctor's professional expertise and of new
treatment and procedures which may have become available since
the Advance Directive was signed". In its legislation on
mental incapacity (2000), Scotland has not given Advance Decisions
statute force and is managing well without this. CARE holds that
all the proposals on advance decisions should be removed before
4.1 The concern just highlighted could be
eliminated, and some material on Advance Decisions could perhaps
be left in, if the Bill were to incorporate new legislation to
prevent the withdrawal of food and fluid with the intention of
ending life or hastening its end.
4.2 This issue has been the subject of much
discussion in theHouse of Lords during the recent debate surrounding
the Patients' Protection Bill as tabled by the Baroness Knight
of Collingtree. The Committee should consider if the current Bill
would benefit from the wording of the recentamendment tabled by
both Baroness Knight and Baroness Finlay of Llandaff to the Patient
Protection Bill, Amendment No 1 (4 July 2003):
(1) No offence will have been committed
under section 1(1) if any of the requirements in subsections (2)
and (3) below are met.
(2) The patient
(3) In the case of a patient who lacks capacity
to consent, consultation by the doctor in charge with the next
of kin or legally appointed representative has taken place, and
the provision of sustenance
is likely to cause significant discomfort to the
patient without improvement in his condition, or worsen his illness
or debility; or
(4) For the purposes of subsection (3) a
patient lacks capacity if he is unable to understand in broad
terms the nature and effect of the decision to withdraw or withhold
4.3 New legislation should enshrine the
prohibition of intentional killing by omission (withdrawal of
food and fluids from the non-dying). CARE's concerns at (3) about
Advance Decisions would then substantially be met.
5. EXCLUDED DECISIONS
5.1 CARE welcomes those excluded decisions
listed in Clauses 26-29, but believes that because they are central
health and family issues, the following should be added:
Termination of pregnancy.
Long term depot contraception.
These are issues with permanent consequences
which are very important to the health and social well being of
some incapacitated people. The medical and ethical aspects need
addressing specifically. Detailed consideration might be provided
for in the Codes of Practice described in Clause 30, if there
were specific mention of the concepts in "Excluded decisions".
6. THE COURT
6.1 CARE's particular concerns with the
proposed legislation are around healthcare issues, and while welcoming
the concept of the new Court of Protection, CARE recommends that
judges and staff involved with the Court should receive specific
training in healthcare ethics and practice. This training would
be similar to the Judicial Studies Boards organised by the Lord
Chancellor's Office for members of the judiciary. This latter
point is particularly important, as legal officials must be fully
aware of the practical consequences of the decisions they take.
They need to know what actually happens in the real world of health
and social services.
7.1 CARE is grateful for the opportunity
to make this response, and is willing to help with oral evidence