19.Memorandum from Dr P J Howard (MIB
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
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.
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.
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.
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 dehydration.
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 die earlier."
Such treatment includes "artificial"
nutrition and hydration but not the "offer of oral hydration
and nutrition" (paragraph 3.3).
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 European
It is also not surprising that the BMA recognizes
the strain that such policies would place on staff and the need
"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
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 81.
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
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 Guidancein
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
`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 doctor.
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
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.
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 deliberate self-harm.
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, through dehydration.
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.