14.Memorandum from the Joint Ethico-Medical
Committee of the Catholic Union of Great Britain and the Guild
of Catholic Doctors (MIB 781)
The Joint Ethico-Medical Committee is composed
of members drawn from the two parent bodies. The Catholic Union
is an organisation of the Catholic laity which is not affiliated
to the hierarchy but which represents the Catholic viewpoint,
where relevant, in Parliamentary and legislative matters. The
Guild of Catholic Doctors represents Catholic Medical Practitioners
in the United Kingdom.
In the Bill:
There is no legal definition of "best
interests", only a list of matters to be considered, with
reliance on presumed wishes and feelings of the incapacitated
There is no provision of an independent
second medical opinion or appeals process before taking matters
to the court.
The lasting power of attorney has
considerable power with no accountability. This opens the possibility
of withdrawing nutrition and hydration or other measures with
the intention of ending life. There needs to be a prescribed duty
of care and accountability for decisions taken.
There is no registration, validation
of the authenticity or process to establish that an advance directive
was made by a person whilst they had mental capacity.
It appears that several of the recommendations
are contrary to the articles of the European Convention of Human
We consider that:
Advance directives should be advisory
and not mandatory. Current case law is sufficiently robust to
enforce advance decisions in circumstances that would be acceptable
1. In this submission we will restrict ourselves
to those matters covered in the draft Bill which affect the medical
care of those with incapacity.
2. We welcome the principle of the Bill's
proposed protection of the welfare needs of persons lacking capacity
and the introduction of the principle of a "general authority"
where actions of medical personnel, which have previously been
performed using the principle of "necessity", will now
have a legal basis.
3. We welcome the Government's statement
made recently that there is no intention to change the law on
euthanasia, which will remain illegal. However we note that the
Government definition of euthanasia is "a deliberate intervention
undertaken with the express intention of ending a life . . ."
(Annex C), whereas the Catholic understanding of euthanasia is
"Euthanasia in the strict sense is understood to be an action
or omission (our emphasis) which of itself and by intention
causes death . . ." (Evangelium vitae 65). This may
lead to serious issues of conscience for many healthcare staff
in some situations of the withdrawal of nutrition and hydration,
which we will refer to later in this submission.
4. The implementation of the Scottish Mental
Incapacity Act has shown that the complexity of the legislation
has led to difficulties in delivering good medical care; eg it
has proved difficult to administer 'flu vaccine to demented patients
without going through a complex administrative process. We therefore
suggest that legislation affecting medical care in this area should
be permissive, to be used only when necessary, rather than mandatory
and applying to all medical care of mentally incapacitated patients.
Egif there is a lasting power of attorney it could seriously
hamper good medical care if consent had to be sought from the
attorney for every medical decision taken.
5. We acknowledge that determining mental
incapacity can be difficult and point out that in the context
of a busy A&E department, the most that can be expected from
busy junior doctors is an assessment of a patient's orientation
in time, place and person using indices such as the "Mini
Mental Test"a list of 10 simple questions. This gives
a working indication of their mental state but has limitations
and would not seem to constitute a formal assessment of mental
incapacity according to this Bill.
6. Subsection 1 (b) We suggest that not
only does a patient need to retain the information, they also
need to believe it. Eg a person suffering from paranoia. We also
suggest that it is important to be confident that the patient
does not feel either external or internal pressure which may hinder
them in making a decision as in [Re: T (Adult: refusal of treatment)
 4 All ER 649)] where it was deemed that the advance refusal
of blood transfusion, by a pregnant Jehovah's Witness, had been
invalid as it was made under duress.
7. We are seriously concerned that there
is no legal definition of a person's "best interests",
but only a list of matters to be considered. It is important to
clarify that in the healthcare setting the medical best interests,
as determined by the patient's doctor, must be taken into account.
Once the patient's condition and circumstances has been assessed,
a decision needs to be made taking any other relevant factors
into account. However, we do not believe that the "best interests"
of the patient can be properly considered without regard to their
8. The best interests of an individual can
be regarded from different aspects. Healthcare professionals are
primarily concerned with their patients' medical/clinical best
interests, which are directed to preserving life and promoting
good health. The purpose of medical treatment is to cure or alleviate
a pathological process and is directed towards the restoration
of physical and psychological well-being of the person and the
alleviation of pain and suffering. Where life is approaching its
natural end, treatment should be palliative.
9. We accept that a person with capacity
can exercise their right of autonomy and act contrary to their
best interest. However a difficulty arises when considering substituted
capacity (either as a general authority or lasting power of attorney).
There is no provision in this Bill for the resolution of a conflict
when the presumed wishes of an incapacitated patient are at variance
with a common view, or a medical view, on what is in a person's
best interest. The legislation needs to recognise that an individual's
wishes may be very different from their "best interests"
particularly from a medical point of view. In the medical context
there is a need for a quick and simple method to resolve conflicts
between an attorney's and clinician's view on what is a patient's
best medical interest, otherwise medical harm may be done.
10. Clause 4 Subsection 2(a). We suggest
that this section is badly drafted. The explanatory notes indicate
that the intention of this section is that if a period of incapacity
is likely to be temporary, then delay in making a decision should
be considered so that the person themselves can make the decision
on recovery of the capacity. However, as the Bill is written this
clause could imply that what is in a person's best interests is
dependent on whether they are likely to have capacity in the future,
and as such can be construed to mean that those with permanent
incapacity should be treated medically differently to those who
are likely to regain mental capacity.
11. Limiting consideration to "his
past and present wishes and feelings" is totally inadequate
in the medical context. For instance, a depressed or suicidal
patient may wish that his life should no longer continue and acceptance
of this patient's wishes and desires would therefore lead to medical
decisions against giving life sustaining or curative treatment.
12. Clause 4, Subsection 4. Doctors accept
that patients have a right to refuse treatment, even though their
reasons for doing so may be irrational. Healthcare professionals
have a duty to provide best possible medical care and are accountable
for a failure to do so. However, under this Bill attorneys or
deputies can make decisions to refuse treatment which are binding
on healthcare staff, without any corresponding accountability
for such decisions. We believe that the phrase "if the person
reasonably believes that what he does or decides is in the bests
interests of the person concerned" will be a unassailable
defence against even the most gross violation of "best interests".
13. We suggest that the attorney must present
firm evidence that he or she truly understands what they are proposing
and that "informed consent" is contemporaneously applicable;
that is to the current situation.
14. We support the concept of general authority,
and the provision of a legal authority to do what doctors have
previously done under the "rule of necessity".
15. The experience of some of our colleagues
in Scotland has highlighted that the working of the lasting power
of attorney has led to burdensome bureaucratic procedures which
have impeded the administration of routine medical care. We would
expect that most routine care will continue to be provided under
16. Subsection 1(a). We commend the final
paragraph of this clause. It is often necessary to restrain incapacitated
patients when administering medication. For instance a diabetic
suffering from hypoglycaemia may became extremely aggressive and
the urgent administration of intravenous glucose, usually whilst
restraining the patient, is vitally important and instantly curative.
17. Subsection 2. We are concerned that
a decision by the donee of a lasting power of attorney will override
the medical decision of the healthcare team. There is no provision
in the Bill for a second independent medical opinion procedure
in the case of disputes between the attorney and doctor. In Scotland,
disputes are first referred to a second opinion doctor. If they
cannot be resolved then interested parties can apply to the Court
of Session to determine if the treatment may proceed. There is
no such provision in the current Bill and disputes would need
to be referred directly to the Court.
18. The courts have a primary role in addressing
matters of law and not the merits of a particular medical treatment.
We are concerned that when cases are referred to the Court, it
will, quite properly, concentrate on the legality of the decisions
made by the donee of a lasting power of attorney and not properly
address the merits of the medical treatment being disputed by
the attorney, to the potential detriment of the patient. Hence
our suggestion for an independent medical opinion or appeals process
prior to any court process.
19. Subsection 3. The Catholic (and other
religions) understanding of euthanasia is an act or omission to
bring about the death of a patient. We believe that provision
of food and fluids normally constitutes part of basic care necessary
to sustain life. We believe that there are many circumstances
where the removal of nutrition and hydration (including some cases
authorised by the Courts) constitute euthanasia by omission and
so are contrary to the conscientiously held views of many. The
religious principles of a substantial body of those working in
healthcare need to be preserved and upheld. In the same way that
patient's religious views are accepted, so too the religious views
of healthcare personnel must equally be respected.
20. We believe that medical management of
the mentally incapacitated should remain with healthcare professionals
who, as a matter of good clinical practice, should consult the
patient's nearest relatives, carers and attorney. Involvement
of the attorney should be regarded as evidence of acting reasonably
under the circumstances. If the attorney is to be empowered to
make clinical decisions, they also should be under a duty of care
in civil law to the patient for wrongful decisions. In Scotland,
according to the Regulation of the Adults with Incapacity Scotland
Act (2000), welfare attorneys have a duty of care under common
"6.1 An attorney, guardian or other
person acting under the Act is held at common law to owe a duty
of care to the adult with incapacity. They must act with due skill
and care in exercising the power they have been given in relation
to the adult. A professional person acting as a proxy must demonstrate
the skill and care that would be expected of a reasonably competent
member of that profession.
6.2 An attorney has what is known as a `fiduciary
duty' to the granter. This means that you are in a position of
trust with repeat to the matters covered by your powers. The adult
has placed trust in you to exercise the powers properly."
21. The attorney will have the power to
refuse medically advised treatment. The attorney may also have
power over the patient's financial affairs. The explanatory notes
(Annex A, para 4) highlight that there may be financial abuse
in 10-15% of enduring powers of attorney. There will certainly
be circumstances where the family will benefit financially from
the patient's death, and under this bill the donee will now have
the power to refuse treatment and so hasten that patient's death.
This potential conflict of interest is not addressed in this Bill.
CLAUSE 10, SUBSECTION
22. We suggest that there is an additional
paragraph which specified that basic treatment and care cannot
be refused. Basic care consists of those measures necessary to
the survival of the person. (see also our comment on Clause 17(d)
CLAUSE 12, SUBSECTION
23. There is a contradiction between this
section, which simply states "P may, at any time when he
has capacity to do so, revoke the power", whilst Paragraph
14, sub-paragraph 1(a) of Schedule 3, Part 4 states that "no
revocation of the power by the donor is valid unless and until
the court confirms the revocation under paragraph 15(3)".
This would certainly appear to prevent an immediate revocation
of the kind which might be necessary in a medical emergency.
CLAUSE 17, SUBSECTION
(D)SECTION 16 POWERS:
24. We note that the Law Commission document
"Mental Incapacity" (Law Comm 231, 1995) stated that
no court, attorney or deputy should be permitted to refuse "basic
care". This is no longer present in the current Bill. We
support the original Law Commission recommendation and add that
basic care not only includes food and fluids, but the continuation
of ordinary care already being giveneg we do not believe
that it is acceptable to withdraw insulin from a long-standing
diabetic as part of the decision to withdraw medical treatment
on the grounds that it is futile or burdensome.
25. We accept that the placing of a feeding
tube should be regarded as a medical procedure, but we would argue
that the administration of food and fluids through an established
feeding tube is normally part of basic care and should not be
regarded as "medical treatment" which can be refused
or withdrawn. (There are rare circumstances where the food and
fluids cannot be absorbed and so can be withdrawn as continuation
of administration will not achieve its purpose).
26. It is a key principle of informed consent
and good medical practice that a patient must have an explanation
of the risks and benefits of a specified treatment, as well as
an explanation of the potential consequences of refusal of that
treatment (if a patient indicates they wish to refuse treatment).
We therefore accept in principle that a patient can give an advance
refusal of treatment, but we would wish there to be a system of
validation of such an advance refusal.
27. We believe that case law has already
established the principles of advanced refusals, particularly
the judgment of Mr Justice Hughes in the case Re: AK (High Court
of Justice, Family Division: Hughes J. (2000) 58 BMLR 151; 
1 FLR 129) and suggest that this judgement should be a basis for
accepting advance refusals and specified in the Act. Mr Justice
"It is . . . clearly the law that the doctors
are not entitled so to act if it is known that the patient, provided
he was of sound mind and full capacity, has let it be known that
he does not consent and that such treatment is against his wishes.
To this extent an advanced indication of the wishes of a patient
of full capacity and sound mind are effective. Care will of course
have to be taken to ensure that such anticipatory declarations
of wishes still represent the wishes of the patient. Care must
be taken to investigate how long ago the expression of wishes
was made. Care must be taken to investigate with what knowledge
the expression of wishes was made. All the circumstances in which
the expression of wishes was given will of course have to be investigated.
In the present case the expression of AK's decision are recent
and made not on any hypothetical basis but in the fullest possible
knowledge of impending reality."
28. In the majority of advance refusals
of treatment, which are currently being proposed by various organisations,
there is no way to establish what understanding the patient had
of the risks and benefits of treatment, and more significantly
whether they were fully aware of the consequences of refusal.
Advance directives, rarely if ever, meet the standards of informed
consent that is required from patients with capacity. The wording
of the Bill ". . . expressed in broad terms or non-scientific
language." is an antithesis of case law and the principles
expressed in other areas of the Bill, ie that the circumstances
and treatment must be specified.
29. There are regulations which must be
adhered to in order to accept the validity of a last will and
testament. This Bill gives no indication of how the medical team
are to assess the validity of an advanced refusal of treatment.
The Bill does not even specify that an advance decision needs
to be in writing. Situations could be envisaged where the relatives
would prefer that an aged incapacitated patient died. They may
fraudulently prepare and present an advance directive worded so
that it appears to be specific and applicable to the current situation.
Without prior registration of such a document with medical authorities,
where it can be validated that it truly was made by the patient
and whilst they had capacity, how are the medical team expected
to even make the simplest judgment about its validity?
30. When considering refusal of treatments
in patients with capacity, the clinicians will verify with the
patient that they understand implications of refusal, and established
practice is that the patient is normally asked to sign that they
are refusing such treatment. There is no way of assessing in an
advance directive that the patient does understand the potential
consequences of refusal of treatment, even though they may have
specified refusal of life-sustaining treatment. It may well be
that refusal does not lead to death but leads to worsening disability
and increased suffering.
31. There is no logic in the Bill limiting
advance directives to refusal of treatment. It is now common medical
practice to prepare a treatment plan for patients suffering with
progressive degenerative diseases whilst they still have the capacity
to make decisions. Such a treatment plan will include both therapy
they would wish to receive as well as those they would wish to
refuse. However such plans are regarded as advisory and circumstances
may occur which would override the original treatment plans.
32. Another example where legally binding
advance refusals of treatment can be dangerous is in women presenting
their obstetricians with "birth plans" on how they would
like their delivery to proceedeg these may state refusal
of forceps delivery etc. When the delivery is proceeding well
such plans can be fully respected. However if complications then
arise, it may be the case that the woman has already been sedated
sufficiently to make her mentally incapacitated within the meaning
of the Bill, and adherence to the directives of the "birth
plan" could result in brain damage to or death of the baby.
Clinicians in our own committee have direct experience of such
33. For these reasons we strongly argue
that advance directives should be respected as advisory documents,
and we believe that current case law is sufficiently strong to
allow patient's wishes to be respected, but equally allowing appropriate
medical treatment to be given when the situation demands.
34. Our preceding and following comments
clearly explain our concern at the proposed legally binding nature
of advanced directives as laid out in this Bill. We clearly state
our view that legislation will make it very difficult for practitioners
faced with the need to make rapid decisions in acute medical emergencies
to easily and clearly decide when an advance directive is valid
and applicable. Fear of litigation may well result in doctors
withholding appropriate care with resultant harm to the patient.
35. Subsection 1(a). There is no definition
of what constitutes a valid advance decision, or how it is to
36. Subsection 1(b). This should read at
least "clearly applicable to the treatment".
37. Subsection 4(c). This should read at
least "circumstances and treatment opportunities which were
not clearly understood or clearly anticipated by P at the time
. . ."
38. There has been extensive debate about
the morality of the Bland judgment which declared that food and
fluids can be regarded as medical treatment and therefore withdrawn.
There is a considerable body of medical opinion that believes
that elective withdrawal of nutrition and hydration given through
an established feeding tube is euthanasia and therefore ethically
unacceptable. This Act gives no protection to those members of
the healthcare team who hold such views as part of their religious/ethical
convictions. We ask that the Act allows for those with conscientious
objection to refuse the implementation of some forms of advance
directive without the individuals concerned suffering any professional
39. We accept specific advance refusals
of treatment such as in Re: C, (Adult: refusal of treatment) 
1 All ER 819)the Broadmoor patient who refused an amputation,
where the circumstances were present whilst the patient had capacity
and the consequences of refusal were clearly explained. We also
accept the principle that Jehovah's Witnesses may wish to refuse
all blood transfusions. We are strongly opposed to blanket refusals
of a wide spectrum of treatments in a broad set of circumstances,
that cannot be known about at the time the advance refusal is
drawn up. We note that subsection 1 provides that "the advance
decision will need to specify the treatment that is refused and
may specify the circumstances in which the refusal will apply"
(Explanatory notes). However, below is a typical format of an
advance refusal currently being presented to doctors:
5. If I have any condition described in paragraph
4, above, I direct that all procedures which might prolong my
life be withheld or withdrawn, and that I be permitted to die
with only the performance of any medical procedure necessary to
provide me with comfort or to alleviate unnecessary pain. Specifically,
but without limiting myself, I do not want surgery, medication
(except pain relief), cardiopulmonary resuscitation, antibiotics,
kidney dialysis, blood transfusions, radiation or chemotherapy,
or a mechanical respirator.
6. I do NOT want my life prolonged by tube
or other artificial feeding or fluids if my condition is as stated
above in paragraph 4.
40. We believe that this is a broadly based
blanket refusal of all treatment, which should not be regarded
as valid, despite it specifying the circumstances and specifying
refusal of almost all or any treatment. If such an all embracing
list of refusals were to be acceptable under the present Bill,
proper treatment in accordance with medical criteria would effectively
be excluded. We argue that the above example of refusal of treatment
is made on a hypothetical basis without the fullest possible knowledge
of the impending reality.
41. We can also envisage the scenario where
a suicidal patient may prepare an advance directive which clearly
specifies that they have taken a particular drug and then specify
that they refuse to have their stomach washed out or receive the
specific antidote to that drug. According to this Bill, the circumstances
and life saving treatment being refused will be very specifically
addressed making that advance directive legally binding. The doctors
will then be legally barred from attempting to resuscitate that
patient. It could even occur that the overdose is not fatal, but
that the patient is left with significant permanent and disabling
organ damage. It is because of likely scenarios such as this that
we oppose making advance refusals of treatment legally binding,
other than in the circumstances already present under case law.
(Re: AK quoted above)
42. Clause 25 subsection 2. We would suggest
the addition of paragraph (c). "he has reasonable grounds
to doubt the validity of an advance directive."
43. Clause 25 subsection 3. We propose that
there must be some accountability for decisions made on behalf
of the incapacitated. Granting immunity to one who withholds or
withdraws treatment merely on the basis "in the belief that
that a valid advance decision is applicable . . ." and that
"his belief is reasonable" is an inadequate safeguard
where life or death are in question. Furthermore it is not clear
whether such "belief" relates to the interpretation
of known advance directive or to the alleged existence of an unseen
44. We would suggest the addition of clauses
which state that noone can make decisions relating to abortion,
sterilisation or non-therapeutic research on behalf of a mentally
45. We submit that the Codes of Practice
should be prepared at an early stage and presented as part of
the legislation. In this way it can be seen how the Act is to
work in practice, with particular emphasis of its impact in the
day-to-day delivery of healthcare to those with mental incapacity.
We fear that implementation of the Bill may hamper delivery of
good medical care, as is being experienced in Scotland with the
working of their equivalent Act.
46. The Bill provides no criteria for the
establishment of the validity or the date of an advance directive,
so how can it be that a person can be found guilty of concealing
or destroying another person's written advance directive?
47. We have been given an opinion by Mr
Richard Gordon QC, a human rights lawyer, that the bill is contrary
to the European Convention on Human Rights. Specifically he states
(a) The Mental Incapacity Bill is incompatible
with Article 2 taken in conjunction with Article 6 of the European
Convention on Human Rights because it fails to comply with the
State's obligations under Article 2 to provide practical and effective
protection of the right to life.
(b) In particular, the concept of "best
interests" in the Mental Incapacity Bill is defined by reference
to criteria that are, at least primarily, relevant to autonomy
as opposed to best interests. The decision-making powers of the
donee of the lasting powers of attorney are made by reference
to such criteria but leaving an area of judgment to the donee
that is neither statutorily defined nor protected by access to
the Court within the meaning of Article 6. Similar concerns arise
in respect of exercise of the general authority.
(c) The machinery of recognition and implementation
of advance decisions to refuse treatment are similarly contrary
to Article 2 because they provide wholly inadequate protection
for safeguarding the best interests of persons entitled to protection
under Article 2 at the time that life saving medical treatment
falls to be considered.
(d) Article 14, protecting as it does against
discrimination in the enjoyment of Convention rights, appears
to discriminate between those incapacitated persons who can communicate
objection to certain proposed conduct (see clauses 7 and 10) and
those who cannot. Such discrimination is neither logical nor (therefore)
objectively justified under Article 14.