Submission from the Joint Ethico-Medical
The Catholic Union of Great Britain
Guild of Catholic Doctors
The Scrutinising Committee on
The Draft Mental Incapacity Bill 2003
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 patient.
- There is no provision of an independent second
medical opinion or appeals process before taking matters to the
- 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 to
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; e.g.
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. Eg - if 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.
Clause 2 - Inability to make decisions
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 consitute
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.
Clause 4 - Best interests4 - Best interests
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 clinical need.
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 wellbeing 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.
Clause 6 - The general authority6 - The general authority
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 bureacratic procedures which
have impeded the administration of routine medical care. We would
expect that most routine care will continue to be provided under
Clause 7 - Restrictions on the general authorityClause 7 -
Restrictions on the general authority
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.
Clause 8 - Lasting powers of attorney
20. We believe that medical management of the
mentally incapacitated should remain with health care 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."
Conflicts of Interest
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 4
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) below)
Clause 12, subsection 2
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: personal welfareClause
17, subsection (d) - Section 16 powers personal welfare
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 given - eg. 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)
Clause 23 - Advance decisions to refuse treatment: generalClause
23 - Advance decisions to refuse treatment general
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 B.M.L.R. 151;  1 FLR
129) and suggest that this judgement should be a basis for accepting
advance refusals and specified in the Act. Mr Justice Hughes said:
"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, i.e. 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 proceed - e.g. 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 circumstances.
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.
Clause 24 - Validity and applicability of advance decisions
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
Clause 25 - Effects of advance decisionsClause 25 - Effects
of advance decisions
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 believe
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 an known advance directive or
to the alleged existence of an unseen one.
Clauses 26 - 29. Excluded decisions
44. We would suggest the addition of clauses
which state that no-one can make decisions relating to abortion,
sterilisation or non-therapeutic research on behalf of a mentally
Clause 30- Codes of practice 30- Codes of practice
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 mentally 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.
Clause 32 - Concealing or destroying advance decision to refuse
treatment32 - Concealing or destroying advance decision to refuse
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.
Dr Michael Jarmulowicz FRCPath., MB.BS., BSc.
Joint Ethico-Medical Committee of
the Guild of Catholic Doctors and Catholic Union
of Great Britain