This article appeaned in the May 1998 edition of the CMQ
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Euthanasia and the Government's proposals on Mental Incapacity
JAMES BOGLE
The Lord Chancellor's Department issued, in December 1997, a Consultation Paper (A Green Paper) on the question of making decision on behalf of mentally incapacitated adults. It is called Who Decides? lt approves the work of the Law Commission in its report no. 231 (Lawcom. 231) on Mental Incapacity and makes specific reference throughout to the Law Commission's draft bill on Mental Incapacity.
There are no other legislative proposals that the Government are considering and it is quite clear that it is the Law Commission's draft bill that the Government are considering as regards any future plans for legislation. The bill's full text is set out at the back of the Law Commission's report no. 231 which is available from the Law Commission itself (37-38 John Street, Theobalds Road, London WCIN 2BQ) or from HMSO.
Below is a detailed critique of that draft bill.
THE LAW COMMISSION PROPOSALS ON MENTAL INCAPACITY (Report No. 231)
- The proposals could require Parliament to approve non-therapeutic medical and surgical procedures, such as organ removal, without the patient's consent, and withdrawal of food and fluids from a patient who is not dying.
- The proposals would also require Parliament to approve research upon patients without their consent, although this almost certainly breaches international and European law.
- The proposals would also require Parliament to make "living wills" legally binding.
- The proposals would require Parliament to permit medically unqualified third parties, called Managers or Continuing Attorneys, to make decisions about a patient's health care including decisions about life or death.
- The proposals would require Parliament to approve passive intentional killing.
THE DRAFT MENTAL INCAPACITY BILL
Clause 2 - Definition of Incapacity
- The patient is "mentally incapacitated" if he cannot understand "in broad terms and simple language" what treatment is proposed or is unable to make a decision about it. Moreover, simple unconsciousness is enough (Cl 2(1)(b)).
- The definition is inadequate because it does not define "capacity" nor shades of capacity e.g. drifting in and out of consciousness or dementia.
- The patient may not be "incapacitated" but may still be easily influenced to sign a document or give consent. Scope for abuse is therefore great.
- Conversely, a patient may be only temporarily unconscious but he is still deemed "incapacitated". This would mean he need not be consulted or else that a "living will" may become operative, even though it is clear he is only temporarily unconscious.
Clause 3 - The "Best Interests" criteria
The criteria include:
- the patient's wishes and the need for him to participate (how if incapacitated?).
- the views of other carers, consultees or an Attorney.
- the need not to limit a patient's freedom of action (undefined).
- THERE IS NO CLINICAL TEST OF A PATIENT'S BEST INTERESTS AT ALL.
- The Law Commission admits that this is a significant departure from the present state of the law. (see Lawcom 23 1, para 3.26).
Clause 9 - Advance Refusals of Treatment (ARTs), (including "Living Wills")
- If you are 18 and have "capacity" you can make an Advance Refusal of Treatment (Advance Statement). It comes into effect once you are "incapacitated".
- There would be no liability for withholding treatment which has been specified in an Advance Refusal of Treatment (Advance Statement), even if the patient dies as a result.
- It need not be a doctor who withholds treatment but "any person" i.e. therefore the manager of a nursing home could presumably refuse treatment.
- A written Advance Statement must be witnessed by one other person but "without prejudice to any other" form of executing one. An Advance Statement could, therefore, be oral.
- Withdrawal of an Advance Statement requires "capacity". The bill only defines "incapacity".
- "Basic care" must be provided, that is, the patient is kept clean, free from severe pain and given ORAL food and fluids.
What it means:
- Doctors could be criminalised if they treated a patient who has an Advance Statement and is unconscious or "incapacitated" (e.g. unconscious), even though good clinical practice requires that the treatment should be undertaken.
- Advance Statements would bind doctors and override good clinical judgement. Doctors could be forced to substitute bad clinical practice for good.
- Doctors with a conscientious or professional objection might lose their jobs if they refused to abide by an Advance Statement which required them to starve or dehydrate a patient to death, or to substitute bad clinical practice for good.
- The courts are likely to become clogged with applications by doctors to avoid Advance Statements that they object to on professional or conscientious grounds.
- Doctors would be forced to accept passive intentional killing as a part of their practice, if "living wills" became legally binding.
- After an accident or episode treatment may be forbidden because the patient was unconscious and their Advance Statement prevented treatment. They may survive and be permanently harmed or crippled.
- Non-treatment does not necessarily result in death. Patients who are not treated after strokes (because of an Advance Statement) may not die but may become permanently ill and/or bed- bound instead of being effectively treated.
- Withdrawal of an Advance Statement could be a problem for the confused or frightened elderly. Where they wish to do so but are classified as "incapacitated", they would then be prevented from withdrawing or altering their Advance Statement. Many patients do change their minds when illness actually strikes them.
- Your previous Advance Statement will bind you. This undermines your present autonomy if you are unable to communicate the fact that you have changed your mind and wish now to he treated.1
- Relatives may say "sign this Advance Statement" when an elderly person is confused. It would be very difficult to prove undue influence, by relatives or others, upon that elderly patient after he or she is dead.
- A suicide note may constitute an Advance Statement. What may have been a cry for help could be a death warrant. Non-treatment may mean permanent disability rather than death, after an unsuccessful suicide attempt.
- The law against assisting suicide would be undermined or even overthrown.2
- An Advance Statement might result in your being left to die against your will, where good clinical practice could save you. The decision need not lie with a doctor; it could be "any person", e.g. a Nursing home manager.
- "Basic care" is wholly inadequate: any nursing home provides far more. Oral food and fluids may be provided but no assistance given to consume them and, by definition, other assisted means of nutrition hydration could lawfully be denied, causing the patient to die of dehydration.3
Clause 10 - Non-therapeutic measures
- A state-appointed doctor or Court-appointed Manager could authorise the dehydrating and
starving of a patient4 who is:
"unlikely to recover"
"unconscious"
"has no activity in the cerebral cortex" (undefined)5 - No Advance Statement or "living will" is needed.
- Clause 10(4) further allows the State to authorise "any medical or surgical procedure" which will not cause significant harm", even if it is not for the patient's benefit but will be of benefit to others.
- This might give power to the Secretary of State to allow non-consensual organ removal from living but incapacitated patients who are not dying or even terminally ill.
- What "significant harm" can be caused to a person who is dead or dying? This might well mean organ removal (e.g. by "elective ventilation") followed by termination of life.6 If the patient is in PVS, dehydration will destroy his organs but a court may simply allow organ harvesting before the termination process starts, on the legal basis that this will not cause him "significant harm" because he will soon be dead anyway. With yet further changes in the law (or unscrupulous practice) the patient may be "terminated" by more "active" measures so that his organs may well remain harvestable depending upon how he was brought to imminent death.
- Furthermore, the patient's "Best Interests" criteria are not binding under this clause.
Clause 11- Research procedures on the disabled
- For the first time non-consensual research would become lawful upon a patient even if it is of no benefit to the patient, provided it is "not unduly invasive or restrictive" and does not expose the patient to "more than negligible risk".
- Whilst heavily circumscribed, this clause nonetheless breaches a fundamental principle requiring that a patient's consent be obtained before undertaking any kind of research upon him or her.
- This may be contrary to European Law and to the Nuremberg Declaration.
- Once again, the patient's "Best Interests" criteria are not binding under this clause.
Clause 16 - Continuing Powers of Attorney
- Allows a "donee" of a Continuing Power of Attorney (CPA) to make healthcare (as distinct from purely financial) decisions about a patient who has become "incapacitated", including life or death decisions, if so empowered.
- There are again NO CLINICAL REQUIREMENTS and no clinical judgement need be exercised by the Attorney. It, therefore seems he could not be sued for medical negligence.
- Clause 31 provides no codes of conduct for the donees of a CPA.
- Attorneys would be able to dictate clinical decisions, even if medically unqualified.
- The Courts are likely to become clogged with applications to avoid the orders of Attorneys.
Chapter IV- Court-appointed Managers
- These can be appointed by the court where the patient is "incapacitated" (e.g. if there is no Advance Statement or Attorney).
- There will be a code of conduct but will it specify a clinical test? Unlikely, because the aim of the legislation is effectively to allow clinical decisions to be made by the medically unqualified and to replace doctors' powers to make clinical decisions in those circumstances.
MAJOR PROBLEMS
- Doctors may he criminalised for insisting on good clinical practice (e.g. under "basic care" ARTs).
- Managers and Attorneys will he able to dictate clinical decisions, even if medically unqualified.
- Courts may become clogged by applications to avoid Advance Statements or Attorneys' orders.
- Doctors could effectively he compelled, on pain of job loss, to take innocent life.
- Patients may lose confidence and trust In their doctors and nurses.
- Medical and ethical standards are in danger of being fatally compromised.
- Doctors could he compelled to accept intentional killing as part of their practice.
FOOTNOTES
- The current law, on the other hand, tends to emphasise your continuing, contemporaneous
consent as primary. See the cases of Bolam v Friern HMC [19571 2 All ER 118, Re:F
[19891 2 All ER 545, Re:T[199311 Fam95, Re:C[199411 WLR290, Re: S [1994] WLR 601. The
BMA Code on Advance Statements seems to consider "living wills" binding under
existing law as do some lawyers (e.g Alan Levy QC who cites Re:T). The contrary
position was put to Mrs Justice Hale (who headed the committee producing Lawcom 231) at
one of the BMA's conferences on Mental incapacity. She did not feel able confidently to
assert that they are binding on the basis of existing law. Moreover, she admitted that Airedale
NHS Trust v Bland[1993]AC 885 HL was no authority for legally binding "living
wills" despite the fact that some have cited it as such. Other lawyers (e.g Gerard
Wright QC) do not consider them binding under present law. The Official Solicitor has only
been prepared to say that "the patient's previously expressed views, if any, will
always be an important component in the decisions of the doctors and the court..."
(Practice Note on Vegetative State [19661 2 FLR 375.377). That is considerably less than
saying that they bind doctors.
- Patients cannot currently require a doctor to assist them to die; and this must include
requiring them to withdraw food and fluids so as to cause death. This could he aiding,
abetting, counselling or procuring a suicide, which is a crime under the Suicide Act
1961.
- Hunger and thirst are not diseases. Stopping food and fluids, even delivered by tube, is
not the same as stopping a ventilator. A baby's bottle is no different in effect to a
feeding tube and, if removed, will cause the baby's death. There may he a difficult
decision for a doctor to make when deciding to fit a feeding tube but, once fitted, its
removal will cause death to the patient through hunger and thirst.
- This appears to be an attempt to reproduce the Bland judgement in the bill. It is now
admitted that the decision in Bland was based upon incomplete medical evidence. Moreover,
this clause goes beyond Bland. It allows the Secretary of State, a Manager or a Continuing
Attorney powers to decide. It also fails to define "no activity in the cerebral
cortex". This could mean something very much less than PVS (the Persistent Vegetative
State). It need not mean "brain stem death" or a flat EEG. A PVS patient, for
example, is not brain stem dead.
- The judgement given by the House of Lords in Bland was complicated by incomplete medical
evidence. For example, a postmortem carried out on Tony Bland revealed that his brain was
intact and was clearly not the "watery mass" which it had been described as
being in the evidence. The Law Lords ruled that food and fluids delivered through a tube
are 'treatment', at least in the case of a PVS patient, and can be withdrawn even if death
results. Hunger and thirst are not diseases so, if food and water are deliberately
withdrawn and the patient dies as result, such a withdrawal is a form of passive
involuntary intentional killing. It also means that the patient dies a particularly
unpleasant death. Once this practice becomes widespread it will not be surprising if
relatives and campaigners begin to demand that the patient be given a lethal injection
rather than be forced to die of thirst. That, of course, is active involuntary intentional
killing. At least one academic has already called for the introduction of
"active" measures for this reason.
- Lawcom 231 discusses this openly at para 6.24, admitting that "elective ventilation" currently constitutes unlawful battery. They are unable to see an ethical objection but they say at para 6.26 that they did not invite specific views on this topic (ethical objections might have arisen if they had - a good example of the commission attempting to run ahead of public opinion). At para 6.27, they go one stage further and assert that it would be impractical for decisions about "elective ventilation" to require prior court approval. Presumably they foresee the decision being taken by doctors, Attorneys or Managers. One can easily foresee the pressures that doctors will come under to perform such procedures given the increasing twin demands for both hospital bed spaces and organs.
James Bogie is a Barrister of the Middle Temple specialising in medico-legal issues.