Mental Incapacity Bill Dr P J Howard why this Bill is so dangerous
I have been a Consultant Physician with an interest in
Gastroenterology for over 10 years. I have a particular interest
in swallowing disorders and feeding problems both as a medical
academic and as a Consultant Physician. I work closely in
conjunction with speech therapists and radiologists to provide a
clinical service for those with swallowing problems.
Swallowing difficulties in the immediate aftermath of
strokes are not uncommon. The attendant risks of aspiration
pneumonia in those patients who cannot swallow liquids is now
known to be a significant cause of early mortality in these
patients. Early swallowing assessments in stroke patients are
now routine in general medical wards and stroke units.
Fortunately such swallowing difficulties are transient and
usually recover within the first few week after stroke. As a
Gastroenterologist I am often asked to give advice regarding the
management of such patients and to place gastroscopy feeding
tubes (PEG tubes) in those with long-term feeding difficulties.
In this statement I shall be concentrating mainly on the
implications of the Mental Incapacity Bill for the provision of
hydration and nutrition for those who lack capacity.
Nevertheless, I will also mention the implications of advance
refusals on other aspects of patient care, in particular the
resuscitation of patients who have taken drug overdoses and
written "suicide notes" refusing resuscitation. I shall also
mention the dangers of lasting powers of attorney which would
leave patients injured by wrong decisions unable to claim
compensation or damages since the attorneys (or court appointed
deputies) do not have any statutory duty of care in the Bill.
IS FEEDING TREATMENT OR CARE?
Medical treatment is disease specific. The purpose of
medical treatment is to prevent or treat disease and to
alleviate pain and distress especially when cure is not
possible. Palliative care is an established and respectable
branch of medicine. Care refers to those things which are
necessary in health and disease to sustain life. According to
this definition the provision of hydration and nutrition,
warmth, shelter, companionship, comfort and companionship would
be care not treatment. Nutrition and hydration serve
physiological function required to sustained life.
EFFECTS OF WITHDRAWAL OF HYDRATION
Failure to provide nutrition and hydration will cause the
death. Starvation will lead to death over weeks or months. The
effects of dehydration will lead to death in a much shorter
period, usually within 10-14 days. Death through dehydration, if
the patient is not imminently dying, is a particularly
unpleasant and distressing way to die. Few, if any, patients
would deliberately choose suicide through dehydration. The
immediate effects of dehydration in a conscious subject include
the development of intense thirst and a strong or even
irresistible desire to drink, headache, listlessness, apathy and
confusion progressing to delirium. As dehydration progresses the
tissues shrink as they loose water, the skin becomes dry and
wrinkled, the eyes sunken. With further water loss, blood volume
falls and cardiac output declines with a decrease in the blood
supply to the skin with the risk of pressure sores. Fever
develops, probably because of disturbances in the temperature
regulation in the brain, or because of super added infection in
the by now debilitated patient. Sweating ceases (which is one of
the major means of heat loss) and body temperature may rise
precipitously. If there is any doubt about how unpleasant and
distressing death through dehydration is, one only has to go
without fluids for 2-3 days, let alone 1-2 weeks. Few people in
a Western climate have ever experienced real thirst, much less
dehydration. It is only when patients no longer have access to
water that they would experience dehydration in this country.
Yet this is precisely what is anticipated in this Bill.
DEFINITION OF HYDRATION AND NUTRITION AS LIFE-SUSTAINING TREATMENT
The Mental Incapacity Bill defines "life-sustaining
treatment" as treatment "which in the view of a person providing
health care for P is necessary to sustain life." (s 7(4)).
Hydration and nutrition would therefore be medical treatment as
they are "necessary to sustain life", Moreover, donees of
lasting power of Attorney (and presumably court appointed
deputies) will have the power to refuse consent "to the carrying
out or continuation of life-sustaining treatment" if the power
of attorney "contains express provision to that effect" (s
10(2)). Hence, it is clear that the Bill if enacted intends that
patients may direct the cessation of hydration and nutrition and
also grant powers of attorney to the same ends.
I have yet to encounter a patient who wishes to die through
dehydration and have never come across a deliberate suicide by
BMA AND GMC GUIDANCE
Mention has already been made by several representatives of
the Making Decisons Alliance of the BMA Guidance on withdrawing
and withholding hydration and nutrition. This guidance
specifically deals with treatment withdrawal, including the
withholding of "artificial" hydration and nutrition from those
who are not dying.
"2.1 the main focus of this guidance is decisions to
withdraw or withhold life-prolonging treatment from patients who
are likely to live for weeks, months, or possibly years, if
treatment is provided but who, without treatment, will or may
Such treatment includes "artificial" nutrition and
hydration but not the "offer of oral hydration and nutrition"
Hence in the common situation of swallowing difficulties
arising from stroke, (which is usually transient and recovers
within six weeks), there might be a ban on drip or tube feeding
but not of oral feeding. However, oral feeding of such patients
would risk choking to death or aspiration pneumonia. How can it
be ethically proper to acquiesce to a patient's refusal of tubes
or drips while at the same time offering the patient oral food
and drink which could kill him?
The BMA recognizes (as it should) that the deliberate
withdrawal of hydration will result in a patient's death but
argues that it may still be withdrawn if the doctor feels that
hydration is no longer "a benefit". This implies logically that
life is no longer a benefit to the patient.
"19.1 Although the health care team may foresee that
withholding or withdrawing life-prolonging treatment will result
in the patient's death, this is fundamentally different from
action taken with the purpose or objective of ending the
I cannot think of any circumstances where I may ethically
withdraw hydration from a non-dying patient, knowing that this
intervention will cause the patient's death in 10-14 days. The
logical inconsistency of acknowledging that "withholding or
withdrawing life-prolonging treatment will result in the
patient's death" on the one hand, whilst arguing that this is
"different from action taken with the purpose or objective of
ending the patient's life" is remarkable. In the case of Tony
Bland, the acknowledged purpose of withdrawing hydration was to
bring about his death. The problem was precisely that Tony Bland
would not die, but could go on living for months or even years,
unless his fluids were stopped.
The BMA acknowledges that if doctors are to withhold
hydration certain "safeguards" are required.
"19.3 Decisions to withhold or withdraw artificial
nutrition and hydration from patients whose imminent death is
not inevitable and whose wishes are not known, require
additional safeguards which are discussed in Part 3D".
At 20.1 the BMA states that "it accepts that many people
perceive there to be an important distinction between this and
other treatments" and that . . . "decisions to withhold and
withdraw artificial nutrition and hydration are taken only in
the most extreme cases, where its provision would not provide a
net benefit to the patient". However, later the BMA recognizes
that the withdrawal of nutrition and hydration might be decided
by general practitioners in the community for common conditions
(such as stroke).
"22.1 (a) All proposals to withhold or withdraw artificial
nutrition and hydration whether in hospital or in the community
should be subject to formal clinical review by a senior
clinician who has experience of the condition from which the
patient is suffering who is not part of the treating team . . .
for common conditions, the senior clinical could be a general
practitioner, particularly where the patient is being treated in
the community, such as in a nursing home."
It is clear therefore that the BMA at least recognizes that
the withdrawal of hydration and nutrition with the aim of
causing death will be commonplace in hospitals and the
community. In the preceding paragraph 22.1 it acknowledges again
that "The withholding or withdrawing of artificial nutrition and
hydration will inevitably result in the patient's death." There
is a clear intention of the BMA to support decisions to withdraw
hydration and nutrition from patients who are not in PVS without
the sanction of the court.
"21.1 The BMA can see no reason to differentiate between
decisions for patients in PVS and those for patients with other
serious conditions where artificial nutrition and hydration is
not considered to be a benefit, which are currently governed by
established practice without the need for legal review."
It is perhaps not surprising that the BMA also recognizes a
right of conscientious objection to those (such as myself) who
would object to causing a patient to die of dehydration.
"24.1 Where a member of the health care team has a
conscientious objection to withholding or withdrawing
life-prolonging treatment, he or she should, wherever possible,
be permitted to hand over care of the patient to a colleague.
This is a best practice which may also now be necessitated by
the guarantee of freedom of conscience in Article 9 of the
It is also not surprising that the BMA recognizes the
strain that such policies would place on staff and the need for
"26.1 Although not responsible for making the decision to
withhold or withdraw treatment, those close to the patient are
often left with feelings of guilt and anxiety in addition to
their bereavement. It is important that the family are supported
both before and after the decision has been made to withdraw or
withhold life-prolonging treatment."
"26.2 The emotional and psychological burden on staff
involved in the withdrawing and withholding of life -prolonging
treatment should be recognized and adequate support mechanisms
need to be available and easily accessible before, during and
after the decisions have been made."
If the BMA recognizes such stresses amongst staff making
these decisions, how much more stressful would it be for
Attorneys or court appointed deputies if they were making these
life and death decisions, as proposed by the Mental Incapacity
Bill. The BMA recognizes that "Where the patient has died
following a decision to withhold or withdraw life-prolonging
treatment, however, the usual bereavement may be exacerbated by
feelings of guilt or anxiety about whether the right decision
was made and about the family's role in that decision".
GMC GUIDANCE ON WITHHOLDING AND WITHDRAWING TREATMENT
The GMC Guidance is an improvement on that of the BMA but
it still acknowledges that hydration and nutrition might be
withdrawn from patients who are not dying in paragraphs 38 and
Paragraph 38: Always consult a clinician with relevant
experience . . . in cases where . . . you are considering
withholding or withdrawing artificial nutrition or hydration
from a patient who is not imminently dying, although in a very
serious condition, and whose views cannot be determined (see
paragraph 81 below).
Para 81: "Where death is not imminent, it usually will be
appropriate to provide artificial nutrition or hydration.
However, circumstances may arise where you judge that a
patient's condition is so severe, and the prognosis so poor that
providing artificial nutrition or hydration may cause suffering,
or be too burdensome in relation to the possible benefits."
In the July minutes of the GMC Council (which can be seen
on the GMC website) it was acknowledged that there are issues
relating to the legality and ethical standing of the GMC
Guidance on Withholding and Withdrawing Treatment.
"Our guidance was prepared with the assistance of the
Official Solicitor and a professor of medical law. It was the
product of lengthy and detailed consultation and careful
consideration of statute and common law. No significant concerns
about compatibility with ECHR were identified during the
drafting or consultation process. We did not therefore seek
Counsel's opinion on the guidance. However, the implications of
the ECHR are developing as cases come to court as the result of
the Human Rights Act 1998. In the light of these developments,
and the opinion from Richard Gordon QC now in the House of Lords
library, we are now considering whether to seek an opinion from
leading Counsel, to provide further advice on the human rights
implications and an authoritative opinion to which we may be
able to refer if further public comments are made about the
lawfulness of our guidance."
In his advice Richard Gordon argues that—
"The GMC Guidance envisages situations in which although a
patient's death is not imminent life prolonging treatment my be
withdrawn. There is no suggestion in the guidance that this may
violate Articles 6, 2, 3 or 8 (see above). Further, even the
existing domestic ECHR case-law does not go so far. The Guidance
is, therefore, materially misleading".
"I consider that the provision of hydration in such cases
is likely to fall within the scope of the State's positive
obligations under Article 2 ECHR. Failure even to advise
clinicians of the important of compliance with the principles
set out in existing case law and with the separate obligations
under Articles 6, 3 and 8 ECHR renders, in my opinion, this
Guidance—in this respect—unlawful".
He recognises however, that even the GMC at least doubts
the legality of its own advice—
"Note, for example, paragraph 17.4 of that Guidance which
is ostensibly in direct conflict with paragraphs 38 and 81 of
the GMC Guidance providing (materially) as it does that:
`Except where the patient's imminent death is inevitable, a
decision to withhold or withdraw all treatment is likely to be
inappropriate and potentially unlawful . . .'"
The Mental Incapacity Bill would permit an extension of the
House of Lords decision in Bland  to patients who are not
in PVS and to whom a duty of care remains. Such decisions would
not be subject to judicial review but rather could be made by an
attorney (or court appointed deputy). The state would be failing
in its duty to positively safeguard life under Article 2 of the
ECHR. Deliberate dehydration of a conscious patient so as to
bring about death would also constitute inhuman and degrading
treatment, and therefore be likely to offend Article 3. The
abhorrent nature of such a practice would also offend the
consciences of doctors and nurses (Article 9).
My position is that the family and attorneys should never
be either permitted or required by law to make such decisions
and that doctors must never be criminalised for providing
patients with hydration and nutrition, howsoever delivered. The
proposed Bill would legally require doctors and nurses to
withdraw hydration from patients, knowing that this will
inevitably cause the death of the patient. Continuance of
feeding without the agreement of the attorney would be regarded
as assault or battery since the attorney (or deputy) would
"stand in the shoes of the patient" and have executive
decision-making rights which would be legally binding on the
There are real dangers in enshrining advance refusals of
treatment in statute law. Patients views, wishes and decisions
are not necessarily fixed but may vary over time. Consent to
treatment is often a process rather than an event and patients
may come to accept treatment which they had previously refused
and vice versa. Difficult decisions, in particular, may require
serious deliberation over time and patients may change their
mind about treatment. Few surgeons would accept consent to major
surgery made months or years in advance. Unless advance
decisions are frequently reviewed, they cannot be guaranteed to
represent the contemporaneous wishes of patients. An example of
this is the refusal of blood transfusions by Jehovah's Witnesses
which must be reaffirmed annually. Few advance refusals of
treatment are as vigorous as this. The Bill would allow not only
written, but also oral, advance refusals even if expressed in
"broad terms or non-scientific language".
Particular anxieties for doctors and nurses would arise in
the case of suicidally motivated advance refusals or where the
refusal was for basic medical and nursing care or the provision
of hydration and nutrition, however administered.
Would the refusal of resuscitation in a suicide note
constitute a valid and applicable advance directive? Would it
become illegal to stem the hemorrhage of someone who had slashed
Drug overdose is one of the most common medical
emergencies. However, the Bill would prevent doctors from
treating such patients if they had expressed a wish not to be
resuscitated either in writing or orally. The criteria for
validity are negative (s 24 (1) namely that P has expressed an
advance decision which has not been withdrawn, is not
contravened by a lasting power of attorney created subsequently
and P has not acted in a way that is inconsistent with the
advance decision. The three criteria for applicability (again
expressed negatively) would clearly apply since the treatment is
specifically indicated, the anticipated circumstances have
arisen and are as foreseen in the suicide note.
However, we know as clinicians that the overwhelming
majority of those who take overdoses do not have a suicidal
intention and are pleased to be alive the next day. The term "parasuicide"
is used for such cases. Nevertheless, this can only be known
with certainty retrospectively after the patient has been
successfully resuscitated. The case of suicide notes in cases of
deliberate self harm or drug overdose, illustrate the
difficulties of enshrining advance refusals of treatment in
statute law. The current state of the common law regarding
advance statements was carefully and sensibly set out by Mr
Justice Hughes in the case of Re AK in which he pointed out that
it was important 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." Re AK (High Court of Justice, Family Division:
Hughes J (2000) 58 B.M.L.R. 151;  1 FLR 129). It is my
view that the law regarding advance statements should continue
to evolve through common law rather than be enshrined in
Further difficulties would arise for doctors and nurses in
the case of patients using Advance Refusals of treatment to
bring about "passive" euthanasia through the withdrawal of
life-sustaining treatment such as insulin or through the
withholding or withdrawing of hydration and nutrition.
LASTING POWERS OF ATTORNEY
Anyone making medical treatment decisions must be
responsible for the consequences of those decisions. Doctors and
nurses can be held to account through clinical negligence. A
patient may suffer the consequences of a wrong decision himself.
However, the Bill does not impose a duty of care on the attorney
(or court appointed deputies). There is therefore no redress or
compensation for a wrong medical decision made by a proxy. The
only sanction is in cases of ill-treatment or willful neglect
punishable by imprisonment for not more that two years or a
fine. Ill-treatment or willful neglect are too high a threshold.
Unlike the Adults with Incapacity (Scotland) Act 2000, which
provides a second medical opinion procedure to tackle disputes
between doctors and proxies before recourse to the Court of
Session, there is no such provisions in the Bill. Disputes will
inevitably arise between healthcare professionals and proxy
decision makers who refuse the recommended treatment. Particular
difficulties will arise when basic care, palliation or the
provision of hydration and nutrition is refused. An attorney
might also refuse resuscitation in the case of drug overdoses or
Whilst carers and relatives ought to be involved in
decision-making and should be consulted, executive powers for
medical decision making ought to remain with doctors who remain
accountable and liable for wrong diagnosis, advice and
treatment. Without indemnity for negligence, any patient who is
harmed through malpractice cannot receive compensation.
The definition of "best interests" in the Bill does not
specifically mention "clinical" best interests which was the
basis of the judgment in Re F 1989. According to the common law
principle of necessity, treatment can be given on the basis of
necessity in order to preserve life, prevent a deterioration in
health and to alleviate suffering. Patients will take into
account, not only clinical opinions regarding their condition,
but also other non-clinical factors eg subjective, financial and
religious considerations in making decisions regarding
treatment. Doctors are competent to make decisions regarding a
patient's medical condition and the risks, benefits and
alternatives of any proposed treatment. They are not
professionally qualified to take into account these other
factors in determining what is "best" for a patient.
Nevertheless in the case of incapacitated persons it is good
practice to take into account these additional aspects in so far
as they can be ascertained.
The Mental Incapacity Bill, as currently drafted, would
enable attorneys, or court appointed managers, to refuse medical
treatment, including palliative care and even the provision of
nutrition and hydration, howsoever administered. Article 2 of
the European Convention on Human Rights states that no-one shall
be deprived of life intentionally. It must remain unlawful to
bring about the death of a patient through neglect of basic care
and in particular throughout the withholding or withdrawing of
food or fluids. No patient should ever die, or be caused to die,
The proposed legal basis of decision-making is that it
should be in accord with the patient's "best interests" that it
should be made on the basis of "best interests" however, "best
interests" does not include "clinical" best interests. Deciding
treatment for the incapacitated, doctors should consider first
the clinical needs of the patient and then also the would-be
wishes of the patient in so far as these can be ascertained by
relatives and carers. The responsibility for the ultimate
decision should rest with the doctor, who may nevertheless be
held to account for failing to take into proper account the
wishes of the patient, family and carers who are also
responsible for the patient's well-being.
1. Advance Directives should be taken into account in
deciding the treatment for the incapacitated. Nevertheless they
should not be legally binding on doctors who should retain
responsibility (and liability) for the decisions they make.
2. Attorneys should not be given the legal powers to
determine treatment. This again should remain with doctors who
remain responsible and accountable for the care given to the
patient according to their well established duty of care. If
attorneys were to have the final say in treatment, they should
have a statutory duty of care, be accountable for "negligent"
decisions and liable for damages if the patient is harmed.
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