This article appears in the August 2004 edition of the Catholic Medical Quarterly
Who Decides? The Law and Mentally Incapacitated Patients
The author reviews some impending changes in the law relating to mentally incapacitated patients. Changes have been afoot for several years during which the Government has published several proposals and consultation documents. This paper traces some important trends that will have a major impact on the practice of medicine in the UK in the years ahead. Attention now focuses on the draft Mental Incapacity Bill, which was recently renamed the Mental Capacity Bill. This could come before Parliament at Westminster in the next few months and is the cause of widespread concern. If passed this Bill will make advances decisions legally binding, and will bring English Law in line with that in Scotland, enabling individuals, when compos mentis, to appoint proxy-decision makers to make life and death decisions on their behalf should they become mentally incapacitated. The paper is not a detailed legal analysis, for the author is not a lawyer. This issues are examined from the viewpoint of a concerned geriatrician with a special interest in the ethical use of life-prolonging artificial hydration and nutrition.
The law relating to the treatment of mentally incapacitated adults has been under review in the UK for many years. The account that follows looks at some points that surfaced for debate. It is important to stress at the outset that any person over the age of 16 with mental incapacity may be affected by law reforms proposed by the Lord Chancellor in 1999. These far reaching reforms, which cannot be summarised briefly, are the subject of this paper.
A headline in The Times announcing the new reforms read `Relatives of the terminally ill gain new rights'. The article went on to say that the reforms proposed would affect `people who are old or mentally incapable." Mental incapacity should not be regarded as a terminal illness - many affected individuals can live for years, it all depends on the underlying pathology. Neither should old age be regarded as a terminal illness; it is a state that affects usall unless we die in the prime of life. Many 90 year olds are alert and enjoy life. The other day a lady of 102 appeared on television having visited the Prime Minister to protest at the closure of her residential home! Her comments were sensible and concise. Good medical care for old people adds life to years - it does not bring life to an end. Many old people never experience severe disability, nor do they become mentally incapacitated. It is not all gloom and doom!
It is important to stress that mental incapacity is not always permanent. We can be temporarily incapacitated by drug overdose, mental illness, an alcoholic binge, treatable physical illness or injury. Mental incapacity has a broad spectrum, ranging from confusion such that a person cannot handle their financial affairs, to total incapacity with complete lack of self-awareness and permanent vegetative state. It requires great clinical skill and medical knowledge to make a correct diagnosis and prognosis, ie prediction of the likely outcome in an individual case.
The new reforms are intended to assist in the management of a significant minority of unfortunate adults who, lacking mental capacity, are unable to make decisions about their medical care and cannot give informed consent about such matters as tube feeding or surgical intervention.
When irrevocable life and death decisions are involved and the patient lacks mental capacity, there must be some skilled medical input. Judges who are involved in such matters should listen carefully to the view of the professional involved. Friends or relatives who may be appointed to the role of proxy decision maker should also be well informed, for they may be required to give informed consent on behalf of the patient. No one can guarantee that the judgement made will be correct, for humans are fallible.
Some causes of mental incapacity
- Head Injury
- Excess alcohol
- Alzheimer's disease and other dementias
- Drug Overdose
- Creutzfeld-Jacob disease
- Cerebral palsy due to birth injury
- Prion disease eg human form of BSE
- Brain infections
- Dementia in terminal AIDS
- Oxygen deficiency as in pneumonia
- Strokes - cerebral haemorrhage or thrombosis
- Carbon monoxide poisoning
- Low blood sugar - for many possible reasons
- Side effects of medication
- High blood sugar - diabetic coma
- Inborn errors of metabolism affecting the brain
The Current Situation in England and Wales
The principle of necessity
Under legislation in place in England and Wales at present a mentally incapacitated adult can be treated under the principle of necessity. This is based on a statement by Lord Brandon in Re F:-
"The operation or other treatment will be in the best interest of such patients if but only if it is carried out in order either to save their lives, or to ensure improvement or prevent deterioration in their physical or mental health ".2
This principle has been used, day in day out, by doctors in the management of patients with severe dementia or strokes, who are unable to give truly informed consent to necessary care. There is no good reason why it should not be applied to a dying patient who is mentally incapacitated by disease or sedation. Yet this eminently sensible ruling may soon be replaced by new statutory guidance.
Many people, fearing that they may become incapacitated and unable to refuse treatment that would prolong an intolerable life, sign advance directives. The advantages and disadvantages of these are discussed in detail elsewhere.3 Advance directives are not legally binding by statute in the UK at present, but cannot be disregarded. Few doctors would knowingly go against a valid advance directive without good reason. Verbal directives given by those who have mental capacity and can fully understand the implications of the consent given or withheld are valid. In the case of a patient known only as Miss B, a senior Judge in the UK ruled that her request to have her ventilator turned off was lawful. Doctors who had declined to comply with her request for ethical reasons were fined a nominal amount of £100 for 'trespass'.4
Future legislation on advance directives was thought to be unlikely in 1999. The Government considered guidance in case law, together with the code of practice published by the British Medical Association, provided sufficient clarity and flexibility to enable the validity of living wills to be decided case by case.5 However the situation changed.
Enduring Power of Attorney
The Enduring Power of Attorney Act of 1985 came into force in the UK in 1986 and is to be superseded by new legislation. At present, under the 1985 Act a person, when compos mentis, can make an Enduring Power of Attorney (EPA) in favour of another person. This enables the attorney to deal with his client's financial matters; or should the attorney consider that they have become incapable, the attorney must register the situation with the Court of Protection. Having done so, the attorney may continue to handle the donor's financial affairs with occasional scrutiny from the Court.
"Effective operation of an EPA depends greatly upon honesty and probity of the attorney" according to solicitor Robin Haig. "Sadly", he said, "human nature being what it is... the opportunities for unscrupulous attorneys are extensive. There is also much scope for jealousy and suspicion between members of the family where one relative considers that, for example, he/she should have been appointed rather than the actual attorney, or feels that the person who has been appointed has exercised undue influence on the donor, or is acting beyond his/her authority".6
Court of Protection
Under current legislation, if a person becomes mentally incapacitated and has not given someone EPA, then resort has to be made to the Court of Protection to appoint a Receiver to administer the person's affairs. This is a rather time consuming procedure, during which bills cannot be paid, and forward planning is difficult. It is not unknown for medical staff to be under some pressure from relatives, or even solicitors, to pronounce a person of testamentary capacity against their better judgement, in order to permit the faster track of EPA to be used.
Impending Changes in the Law in England and Wales.
The draft Mental Incapacity Bill
The draft Mental Incapacity Bill was published in June 2003 with comments invited. The time allowed for initial comment was short, and coincided with the summer holiday months - but this is par for the course in such matters in the UK! By November 2003 the Bill had been scrutinised by a Joint Committee of the House of Commons and the House of Lords. Although there has been little time to assess how professional codes of practice such as the BMA guidance of 1999, and the General Medical Council Guidance of August 2002, will work in practice, the Secretary of State for Constitutional Affairs seems inclined to think that voluntary codes of practice are not enforceable. In the face of powerful lobbying for a better statutory decision-making framework, the Government has opted for new legislation. Their vain hope is that the new Mental Incapacity Bill will provide statutory protection for those who care for people who lack capacity and will protect such vulnerable people from abuse.
The Mental Incapacity Bill would, if passed, enable individuals when competent to appoint a proxy health-care decision-maker, a trusted friend or relation to take life and death decisions on their behalf should they become mentally incompetent and unable to take such decisions for themselves. The task of end-of life decision-making would then become the responsibility of a member of the public. The vulnerable will not necessarily be protected by this proposed legislation. One can only hope that the person given this responsibility will consult with health care professionals in order to come to the right decision.
Under proposals put forward in 1999 there were plans to have a new Power of Attorney to replace the current EPA. The term `continuing power of attorney' was used in "Making Decisions" - the Government's proposals as published by the HMSO in 1999.' The draft Mental Incapacity Bill (dMIB), introduced by Lord Filkin in 2003, uses the term `lasting powers of attorney'. A person giving lasting power of attorney (LPA) will be empowered to deal not only with financial matters but also to make decisions about health, personal welfare, property and affairs on behalf of a mentally incapacitated adult. However an LPA will not be able to authorise the withdrawal of artificial feeding or hydration unless given specific authority.8
The scope of lasting powers of attorney: personal welfare.
Paragraph 10 of the draft Mental Incapacity Bill relates to the scope of lasting powers of attorney in the area of personal welfare. The term `personal welfare' sounds harmless enough, but paragraphs 10 (3) and (4) make it clear that `personal welfare' includes 'health'. The wording is couched in negative terms but the effect is transformed by the word `unless' - vide infra! (The emphasis is mine). The authority of the LPA as stated in dMIB 10 (4) is as follows:-
(a) does not extend to giving or refusing consent to the carrying out or continuation of any treatment by a person providing health care for P, unless P lacks capacity to give or refuse that consent;
(b) does not extend to refusing to the consent to the carrying out or continuation of life-sustaining treatment unless the lasting power of attorney contains express provision to that effect:-
(c) is subject to sections 23 to 25 (advance decisions to refuse treatment)8
Thus, to put it another way, an LPA will, in effect, empower a proxy health-care decision-maker to give or withhold consent for any treatment proposed or given, by a person who provides health care, if the patient lacks capacity to give or refuse that consent. Those providing the care need not necessarily be professionals under the terms of the Bill, so the LPA could affect numerous carers, family members and others, who look after the mentally incapacitated. The powers of the LPAwill extend to refusing life-sustaining treatment for the mentally incapacitated person if the LPA contains express provision to this effect.
Under the terms of the dMIB, advance decisions are to be made legally binding, and those who disregard them will be penalised. Section 24 of the dMIB relates to the validity of an advance decision and sets out various situations when it is not valid or applicable. This is a recipe for chaos and confusion, for those who drafted the Bill appear to have no idea of the reality of medical practice! Several witnesses from the medical profession did their best to explain the situation to the Joint Committee from the House of Lords and House of Commons that scrutinised the dMIB. Representatives from the Catholic Union and the Medical Ethics Alliance advised against making advance decisions legally binding: some felt that advance decisions should be excluded from the dMIB altogether. Baroness Finlay also expressed concern. However somegroups who gave evidence viewed advance directives as a logical extension of personal autonomy and favoured their use.
Having listened to all views the Joint Committee recommended that the dMIB should permit the making of advance decisions to refuse treatment. They made additional recommendations, one being `that Codes of Practice should set out what should be considered by any doctor, when treating a person who is incapacitated and who is known to have made an advance decision, in determining when such a decision is valid or applicable. `(See their report9 para 208).
As Dr. John Fleming points out in his excellent commentary on the dMIB, "The giving of a definitive lasting power of attorney to another carries with it the "real likelihood that the patient's best interests will not be served. It is one thing for a doctor to have to consult a person nominated by the patient and to take into full account what he or she has to say. It is quite another thing for the doctor to be bound to decisions which are not medically in the patient's best interests."10
As regards civil liability in health care matters, the Government view in 1999 was that "consent to treatment given by the attorney in respect of an incapable adult, should be regarded as if it was consent to treatment given by the individual patient".7 No doubt this view still stands. However as Fleming observes "Where an advance decision requires a doctor to refrain from acting in a way that will save a patient's life, the patient's autonomy will be extinguished...The same would be true of an advance decision which would prevent the feeding and hydration of a non-dying patient...
Patient autonomy is not an absolute.10
Paragraph 25 (5) of the dMIB is very important for it states:-
"Nothing in an apparent advance decision stops a person
(a) providing life-sustaining treatment, or
(b) doing any act reasonably believed to be necessary to prevent a serious deterioration in P's condition, while a ruling as respects any relevant issue is sought from the court."
Hydration, nutrition and basic care.
The Joint Committee made a distinction between artificial hydration and nutrition (AHN) (see footnote) and basic care. In so doing they followed the advice of the British Medical Association and ignored concerns expressed by the Medical Ethics Alliance and others. The Joint Committee appears to take the view that the provision of AHN is primarily a decision for doctors. This view takes into account the clinical element of decisions to use a nasogastric tube or insert a percutaneous gastrostomy tube in a given set of circumstances. However it disregards the important views of the House of Lords Select Committee on Medical Ethics of 1993/4. At that time their Lordships took the view that AHN should not be withheld unless the means of administration were evidently burdensome to the patient.11
Some recommendations made by the House of Lords & House of Commons Joint Committee on the draft Mental Incapacity Bill of 2003 9
Paragraph 211 of the Joint Committee Report states: "We recommend that the Bill should seek to draw a distinction between basic care (which would include the giving of nutrition and hydration by normal means as well as actions to assist general hygiene and comfort), and the use of artificial means of nutrition and hydration, such as drips and tubes. We support the view that the former falls outside what would normally be called treatment and should always be available to people, whereas the latter should be regarded as treatment in that the decision to use such artificial means is a clinical one to be made in accordance with best professional practice, and in the best interests of the patient concerned, and having consulted those specified in Clause 4 (2) (d)."
Paragraph 212 the Joint Committee Report states: "We further recommend that the use of artificial means should be determined by the doctors concerned in consultation where possible with the patient's family, friends or recognised representatives, on the basis of that patient's best interests and having due regard to previously expressed wishes given in any advance decision. If a valid and clearly expressed wish not to have artificial means of nutrition and hydration is expressed, and the advance decision is otherwise valid, then that wish should be respected."
Source: Draft Mental Incapacity Bill. House of Lords, House of Commons Joint Committee on the Draft Mental Incapacity Bill: Session 2002-03; Vol. 1. The Stationary Office. November 28th 2003. © Parliamentary Copyright House of Lords and Commons 2003. Reprinted with permission.
The euthanasia question
The British Government report `Making Decisions' stated that "The Government wishes to make absolutely clear its complete opposition to euthanasia which is and will remain illegal".7 This statement failed to take account of the fact that many people consider decisions to withhold life-sustaining treatment, especially tube feeding, to be a form of passive euthanasia. The Government continues to profess to be opposed to euthanasia, yet opposes Bills that would protect the vulnerable. The medical establishment vehemently oppose any suggestion that withholding and withdrawing life-prolonging medical treatment including AHN could be construed as euthanasia: they prefer to see it as palliative care. Yet in the USA, where ‘Futile Care Theory’ is rife, some ethicists now speak of "euthanasia in the guise of palliative care".
Many people wrote to the Joint Committee to object to the fact that the draft Bill allows the refusal of life-sustaining treatment such as artificial ventilation, or hydration and nutrition given by artificial or assisted means (AHN). The committee considered that fears about the possible connection between the draft Bill and euthanasia were misplaced. They recommended that additional assurance on this point be added to the draft Bill.
Problems of definition muddy the waters of the hydration debate on both sides of the Atlantic.12 Most people accept that "active euthanasia" means intentional killing by an action such as a lethal injection or deliberate over-sedation. "Passive euthanasia"is taken to mean decisions to withdraw or withhold treatment with the deliberate intention of shortening life. Under the dMIB such decisions will be made on the basis of advance decisions or by LPAs' actions on behalf of mentally incapacitated persons.
An enhanced Court of Protection
An enhanced Court of Protection headed by a senior judge and sitting in the regions of England and Wales and in London, will be able to settle disputes about whether a person lacks capacity, and/or make decisions on personal welfare for those unable to do so for themselves, or appoint a person (a "deputy") to make decisions on behalf of the mentally incapacitated person, or give or refuse consent to the provision or continuation of health care, or may direct that the person responsible for the patient's health care allows another person to take over that responsibility. In other words the Court of Protection will have very wide powers in relation to the care and well-being of people with mental incapacity. (See draft MIB paras 15-17)
There will be a compulsory registration system for individuals acting as LPAs and there will be a Registering Authority. No LPA can act without registration. Powers in relation to health care matters must not be invoked before the donor has become incapable. A LPA will be obliged to notify interested parties prior to registration, so that family disputes and objections can be settled by the Court if need be.
The new Court of Protection will be able to revoke a LPA on grounds of unsuitability: this could occur if the attorney is not acting in the best interests of the donor. However, this `safeguard' could be difficult to guarantee in matters of healthcare, for the donor could be fatally harmed before the Court could intervene. On the other hand the Court might overrule a directive that treatment be continued, with equally fatal results. Presumably, if doctors feel that a LPA is acting unreasonably, they will be able to appeal to the Court, but this could be time-consuming, expensive and somewhat impracticable in a busy hospital setting.
In 1999 the Government believed "that certain serious health-care decisions, such as withdrawal of artificial nutrition and hydration from a patient in a PVS or similar condition, and questions of treatment where the patient has made an advance statement, should remain a matter for the court and should not be able to be delegated to a manager". No such wording appears in the dMIB and the word `manager' has been changed to 'deputy'.
The new Court of Protection will be able to appoint deputies to deal with specific tasks under strict controls. The powers conferred on the deputy will be as limited in scope and duration as possible, but could at the discretion of the Court include `personal welfare' decisions, and hence life and death decisions [see dMIB at para 16 and 17 (d)(e)]. A deputy is to be regarded as the patient's agent... within the scope of his appointment [para 19 (6)] but may not counteract valid decisions made by a LPA. Thus a deputy does not replace a LPA.
It remains the case that the High Court should be approached for a declaration before AHN is withdrawn from patients with PVS or `near PVS'. According to professional guidance issued by the British Medical Association andthe General Medical Council, legal advice should be sought in disputes about withholdingand withdrawing hydration and/or nutrition from patients who are not in PVS but lack self-awareness or are mentally incapacitated.
To summarise If the dMIB becomes law, it will be possible for life prolonging measures, including hydration and nutrition given by artificial means, to be withheld or withdrawn on the word of a LPA appointed by the patient, a deputy appointed by the Court, or by the Court of Protection itself. This would in effect extend the decision in the Bland judgement to permit AHN to be withheld from any mentally incapacitated patient, irrespective of whether they were in a persistent vegetative state or not. This would be a major slide down the slippery slope!
The dangers of proxy decision makers.
Laws affecting adults with mental incapacity impinge on all decision making from minor operations where the patient cannot give informed consent, to the withdrawal of life-prolonging treatment. So when we talk of proxy health care decision makers we are talking of people with an onerous responsibility. The House of Lords' Select Committee on medical ethics, reporting in 1994, expressed concern about proxy-decision makers. They noted that personal relationships are not immutable, the choice of proxy might soon become out of date and previous statements of preference form an unreliable basis for future decisions. In their view proxy decision-making is vulnerable to the same problems as advance directives, and indeed toa greater degree." Unfortunately their advice was not heeded. Proxy decision-makers with Continuing Powers of Attorney (CPA) appeared in "Making Decisions"the Government proposals of 1999, and remain in the dMIB as people with lasting powers of attorney (LPA).
Robin Haig - an experienced solicitor - made the following points about CPA in 1999:-
"To allow third parties to make decisions relating to health and personal welfare as well as to property is to introduce something which the law has, quite properly, not permitted in thepast. The dangers for the donor of such powers, from an unscrupulous attorney, or an attorney who is manipulated by others, are obvious".6
"No donor of such a wide-ranging power of attorney as CPA could possibly fully understand the implications of what they are doing and the name of the document they are signing. In practice at present, many EPAs are signed by elderly people who recognise their own increasing frailty and wish to make some provision, usually with the intention of making things easier for their relatives...He/she will often understand that the EPA will enable the attorney to act on his/her behalf in financial matters if necessary, but litte more than that. Often an elderly person simply does not wish to be troubled with too much explanation and detail".6
"... in many cases, attorneys under CPA, who were heirs to the inheritance, might have a financial motive to ensure that the donor died earlier rather than later".6
Our friends can change with the years. "People may forget that they have signed a CPA or simply fail to get around to revoking it. They could then find that the person in control of their money and their health is someone with whom they have had a severe disagreement."6 Yet the implication is that such a person could have the authority to authorise the withdrawal of fluids and nutrition with fatal results. It might be deemed that refusal of medical treatment was in a person's "best interests" in order to hasten death and thereby put the person out of his misery.
"Legislation of CPAs would provide a strong move towards the introduction of euthanasia."6
Rachel Hurst, Director of a London-based charity `Disability Awareness in Action' made the following points in 1999:-
! Disabled people may be under pressure from family members and carers. "There is no doubt", she said, "that much informal decision-making goes on and is harmless. More often than not it is in the best interests of the disabled person. However, to extend an individual's authority over another should only happen within the courts or in a situation of complete independence from financial or family interests..."13
! Disabled experts should sit on medical ethics committees, they should advise courts and solicitors, and they should be available to act as advisors to individual disabled people who fee they need support under the terms of mental incapacity law...13
! "Best interest"should be from the perspective of the disabled person, and not from the experience of the person with powers of attorney.13
! "Inherent in all this decision-making" said Hurst "is the basic idea of what constitutes quality of life. There is no doubt at all that courts and all other special appointees have varying attitudes to quality of life and some can only see quality in terms of the ability to work or play, free from physical suffering and in as near to normal range of physical and mental ability as possible".13
Best Interest Criteria were proposed by the Law Commission and agreed in 1999 as follows7:-
- The ascertainable past and present wishes and feelings of the person concerned and the factors the person would consider if able to do so.
- The need to permit and encourage the person to participate or improve his or her ability to participate as fully as possible in anything done for, and any decision affecting, him or her.
- The views of other people whom it is appropriate and practical to consult about the person's wishes and feelings and what would be in his or her best interests.
- Whether the purpose for which any action or decision is required, can be as effectively achieved in a manner less restrictive of the person's freedom of action.
In addition, as a result of comments received on consultation, the following factors will be taken into account in legislation:-
- Whether there is a reasonable expectation of the person recovering capacity to make a decision in the reasonably foreseeable future.
- The need to be satisfied that the wishes of the person without capacity were not the result of undue influence.7
NB The criteria for best interests as set out in the dMIB can be found in Clause 4. They are very similar to the proposals listed above.
Note that there is no reference to anything like `life' or `health' in this list of factors - yet these would be basic concerns for any individual when considering their own best interests. The Law Commission admitted that their proposals in this area "probably involve a significant departure from the present state of the law."14
A Consultant Psychiatrist, Dr. Simon Halstead, commenting on the Law Commission's criteria for `best interests', noted that - "they are procedural only, and simply specify what must be done to make a valid decision. They are devoid of any notion of objective benefit. Put simply, they can permit both life and death..."15 Unfortunately Lord Brandon's `principle of necessity' finds little favour with the British Government now that treatment limitation is the order of the day.
The hidden agenda in all this is that it may be judged that it is in someone's "best interest"to die. The mental incapacity laws could prove to be a death warrant for thousands of people. Some will sign their own death warrant through advance directives or by instructing proxy-decision makers. Others will be despatched by a ‘one off’ decision by a new Court of Protection if this is deemed to be in their "best interest". In short the legislation proposed is thoroughly dangerous and could be manipulated to the detriment of the individual. Nevertheless, some individuals who fear incapacity more than death will welcome the proposals.
The Adults with Incapacity (Scotland) Act 2000
Under the terms of current legislation in Scotland "The Adults with Incapacity (Scotland) Act 2000", welfare attorneys, guardians and persons acting under intervention orders have been given power to make medical decisions on behalf of incapable adults. They will be unable to compel doctors to provide medical treatment, but they will have power to refuse artificial food and fluids and treatment such as insulin, on behalf of the incapacitated person concerned.
Concerned lawyers, who commented on this legislation when it was first drafted, pointed out that, where a proxy decision maker is appointed, no one bears ultimate responsibility for a decision that may be clinically negligent or perverse. Responsibility, and therefore liability, may be removed from the doctors and no duty of care is placed on the proxy decision maker. The incapable adult would have no remedy in law. According to the Scottish Council for Human Bioethics, nothing in the primary legislation appears to impose any duty of care on the proxy to do "what is reasonable in the circumstances to safeguard or promote the physical and mental health" of the incapable person. Under the (new) legislation, proxy decision makers will be able to refuse consent to tube feeding and ordinary medical procedures and thereby intentionally bring about the patient's death.16
There is provision in the Scottish legislation for a doctor to overrule a refusal of treatment by proxy, but there is no obligation to do so. Thus the patient could be harmed, or even killed, and no one would be legally liable or responsible. "This could lead to passive euthanasia of the incapable..." warned concerned doctors and lawyers.16
Some potential advantages and disadvantages of proxy-decision makers.
Advantages of proxy-decision makers
- A trusted and thoughtful proxy, acting in the best interest of an incapacitated patient, and working with the doctors in a role of mutual trust, may be in a good position to help the medical team to promote the health and well being of the patient, if recovery is a possibility. However, a proxy is not permitted to ask for treatment that is not clinically appropriate.
- A proxy may protect a patient from excessive attempts to prolong life, under circumstances that the patient might find intolerable. A proxy should therefore be a person who knows the patient well, and understands what they would wish to have done to them under the circumstances.
- A proxy should be prepared to be the patient's advocate if attempts are made to withhold or withdraw life-prolonging treatment without good reason. Legal advice should be sought if necessary.
Disadvantages of proxy-decision making
- Proxy-decision makers, working to rigid pre-conceived instructions, would have all the advantages and disadvantages of advance directives.
- Proxy-decision makers may not understand complex medical and ethical issues. They could be confused and misled by the information provided.
- Proxy-decision makers could introduce malign agenda of their own without anyone being aware.
- A patient could be harmed, or even killed, by the proxy's decision and no-one would be legally liable or responsible. This could result in passive euthanasia of the incapable.16
The Human Rights Act
The Human Rights Act came into effect in England and Wales in the year 2000 but was already in operation in Scotland. An article in the Journal of the Medical Defence Union states that the act will `impose a statutory duty on certain (public) individuals and bodies to act compatibly with the rights set out in the European Convention of Human Rights 1953, and it will require courts and tribunals to do the same when interpreting statutory and other law. 17
The Human Rights Act 1998 incorporates 16 articles from the European Convention into UK law. These include:-
- Article 2. The right to life.
- Article 3. The right not to be subjected to inhumane or degrading treatment, including torture.
- Article 6. The right to a fair trial.
In implementing the European Convention on Human Rights, the Council of Europe Agreement on the Protection of the Human Rights and Dignity of the Terminally Ill and Dying, states:-
"...the right to life, especially with regard to a terminally ill or dying person is guaranteed by the member states, in accordance with Article 2 of the European Convention on Human Rights which states `no person shall be deprived of his life intentionally "18
The Government of the United Kingdom is a signatory to this International Agreement, which could have profound effects on the practice of medicine, for example:-
Article 2, the right to life, calls into question the legality of withholding and withdrawing life-prolonging medical treatment. Where does this leave the BMA guidance on withholding AHN from patients who lack self-awareness?19 Where does it leavethe General Medical Council guidance of August 2002?20 The legality of guidance issuedto the medical profession from both these sources is now the subject of close scrutiny.
Article 3 is open to various interpretations. Some might consider tube feeding to be a kind of torture; others would find slow starvation ordehydration a kind of torture and would want to be tube fed to prevent this. Some might argue that withdrawal of artificial hydration and nutrition is an offence under Article 3 outlawing torture. Degrading is an extremely subjective word that can be used in widely differing ways. Some would consider it degrading to be catheterised or fed by a PEG, but others would welcome such intervention. Itwould be wise to use Article 3 with caution in a healthcare situation.
How will the NHS complaints procedure stand up to Article 6? It should guarantee that decisions are made fairly by an independent and impartial tribunal within a reasonable time. Concerns have been expressed about the rights of doctors in this respect, but members of the public who try to seek redress also have the right to be heard fairly, and within a reasonable time. At present many people with valid legal claims of a `right to life' nature are being denied legal aid and so are deprived of access to justice.' '
In practice the European Convention on Human Rights may prove to be relatively ineffective. Within a matter of days of the Act becoming law in England and Wales, Judge Butler Sloss ruled that withdrawing artificial hydration from two patients in a permanent vegetative state did not amount to "intentional deprivation of life," and did not conflict with the European Convention. Such patients, ruled the Judge, should continue to be allowed to die with dignity. 21,22 Many people would agree withthe Judge, not wishing to be kept alive in a permanent vegetative state. We are on the horns of a dilemma. The problem is where to draw the line.
According to philosopher and lawyer David Oderberg, the author of an acclaimed book on applied ethics 23 ... "for all its grandiose words, the Convention and the Human Rights Act based on it may not offer much in the way of safeguards for certain categories of human being...for it is intended as a `living instrument which must be interpreted in the light of present day conditions. " 24 He predicts "a veritable bonanza for the legal profession..." 25
The Mental Capacity Bill
In a final twist of this saga, the draft Mental Incapacity Bill has now been renamed the Mental Capacity Bill! The Government is said to have plans to rush it through Parliament as soon as possible. A new clause (number 58) has been added.
Clause 58 reads:- "For the avoidance of doubt it is hereby declared that nothing in this Act is to be taken to affect the law relating to murder or manslaughter or the operation of Section 2 of the Suicide Act 1961 (c60) (assisting suicide)."
What precisely, does this mean? Is this statement meant to be reassuring - or is it best regarded as camouflage, a final sleight of handin a deadly game of Parliamentary chess? If life-prolonging fluids and nutrition are withheld with the intention of causing a patientto die, that decision is unlawful. It has only been made lawful through the Bland judgement, which applies only to patients in a permanent vegetative state, each decision being made on a individual basis through the High Court. People with lesser degrees of mental incapacity have no such safeguard at present, if safeguard it be, and could be in an even more precarious state if the Mental Capacity Bill is passed. If this Bill reaches the statute books, countless people will make advance decisions to refuse life-prolonging treatment because they fear disability or think they would rather be dead than tube fed! Such decisions could be construed as having a suicidal intent and might render the advance decision invalid. Others, on becoming mentally incapacitated, may be deprived of life by a Judge, through the Court of Protection. Doctors whose role it is to support life and health will be obliged to stand by as passive observers as their patients fade away. The only beneficiary will be the exchequer, and the patient who occupies the vacated bed!
As one medical witness stated in his submission to the Joint Committee on the dMIB:-
"In actual fact, withholding of food and fluids sanctioned by the Law Lords in the Bland judgement already constitutes euthanasia, as defined as `the intentional killing by act or omission of a person whose life is not worth living." 26
The Mental Capacity Bill fails to recognise this serious situation.
We have moved from Hippocrates to hypocrisy!
Acknowledgement: The author readily acknowledges her debt to many people in the pro-life movement who have discussed these issues with her and supplied her with information over the years.
Gibb F. Relatives of the terminally ill gain new rights. The Times. October 28th 1999.
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Hawkins J. Living wills left in limbo. The Sunday Telegraph Nov. 7th 1999. P7, cols 1-4.
Haig R. in "Who decides?"A guide to the Government Consultation Paper. Published by the Medical Education Trust PO Box 17317. London SW3 4WJ
"Making Decisions"The Government's proposals for making decisions on behalf of mentally incapacitated adults HMSO October 27th 1999.
Draft Mental Incapacity Bill. Scope of lasting powers of attorney: personal welfare. Para 10 (4) a,b,c, The Stationary Office, London June 2003.
Draft Mental Incapacity Bill. Report of House of Lords and House of Commons Committee. Volume 1
Fleming J. The draft Mental Incapacity Bill: will it help patients and protect the vulnerable? Published by The Society for the Protection of Unborn Children. London November 2003.
House of Lords Select Committee on Medical Ethics Report. Para 268, HMSO 1994.
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Hurst R. Director. Disability Awareness in Action, as quoted in ref 6.
Law Commission 231. (Report), para 3, 26, quoted by S.P.U.C. in `Towards Legalised Euthanasia"analysis of the Government Consultation paper "Who Decides?"Making decisions on behalf of mentally incapacitated adults. Jan. 1998
Halstead S. - as quoted in 6.
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Milne C. The Human Rights Act 1998. Journal of the Medical Defence Union. 1999; 15: 18. ©MDU.
Council of Europe Agreement on the Protection of the Human Rights and Dignity of the Terminally Ill and Dying. Sub-paragraph 9. c.iii.
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Royal Courts of Justice, Strand, London 25th Oct. 2000 Case No: FD00P07066 Re v Mrs M. and Case No. FDOOP11143 Re v Mrs H.
Gibb F. Rights Act does not bar mercy killing. The Times. October 26th 2000 p14.
Oderberg D. Applied Ethics. Blackwell, Oxford 2000.
Tyrer v United Kingdom (1978) 2EHRR 1 at Para 31. As quoted by Oderberg.
Oderberg D. Starved to death by order of the court. Human Life Review (USA) Summer 2001 p 103-112.
Kingsley David. Memorandum (MIB 731) to the Joint Committee. Draft Mental Incapacity Bill. Session 2002-03. Volume ii: Oral & written evidence. Ev 318-326 at para 2.2.6. The Stationery Office 2003.
Dr. Gillian Craig, is a retired Consultant Geriatrician.
Footnote. We prefer to use the term
tube feeding rather than artificial nutrition. The primary medical decision
should be whether tube feeding is feasible in a given patient and will stabilise
or improve their condition. The next question, to be decided by the patient if
compos mentis, or by their LPA, should be "What would the patient want?" It is
at this stage that guidance in the form of an advance directive would be helpful
as an indication of the patient's previous wishes. Advance decisions, that are
immovable and fixed in concrete, are another matter and could prove fatal. The
need is for more patient advocacy and genuine consultation with all concerned,
rather than intervention by an LPA with no clinical expertise. Mindless
acceptance of an advance decision, made by the patient maybe many years ago,
could be unwise. Situations can change, medical advances are being made all the
time, illness that is now incurable may become curable. Peoples'attitudes to
disability also change with the years: life may become more precious, or more
burdensome, depending on circumstances. If doctors'hands are tied, they will be
unable to use their knowledge and professional expertise for the benefit of the
patient, and could be forced to act, or refrain from acting, against their
better judgement. As a consequence some patients, with the potential to recover
and enjoy life, will die.
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