The Law Reform Commission of Hong Kong

Decision-Making and Advance Directives

Sub-committee

Consultation Paper

Substitute Decision-Making and Advance

Directives in Relation to Medical Treatment

This consultation paper can be found on the Internet at:

<http://www.info.gov.hk/hkreform>

July 2004

This Consultation Paper has been prepared by the Decision-making and Advance Directives Sub-committee of the Law Reform Commission. It does not represent the final views of either the Sub-committee or the Law Reform Commission, and is circulated for comment and discussion only.

The Sub-committee would be grateful for comments on this Consultation Paper by 30 September 2004. All correspondence should be addressed to:

The Secretary

The Decision-making and Advance Directives

Sub-committee

The Law Reform Commission

20th Floor, Harcourt House

39 Gloucester Road

Wanchai

Hong Kong

Telephone: (852) 2528 0472

Fax: (852) 2865 2902

E-mail: hklrc@hkreform.gov.hk

It may be helpful for the Commission and the Sub-committee, either in discussion with others or in any subsequent report, to be able to refer to and attribute comments submitted in response to this Consultation Paper. Any request to treat all or part of a response in confidence will, of course, be respected, but if no such request is made, the Commission will assume that the response is not intended to be confidential.

It is the Commission's usual practice to acknowledge by name in the final report anyone who responds to a consultation paper. If you do not wish such an acknowledgment, please say so in your response.

The Law Reform Commission

Of Hong Kong

Sub-Committee on

Decision-Making and Advance Directives

Consultation Paper

Substitute Decision-Making and Advance

Directives in Relation to Medical Treatment

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CONTENTS

Preface

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Introduction

1. “Making decisions is an important part of life. It empowers people by allowing them to express their individuality. It enables people to control their lives and gives them a sense of self-respect and dignity. However, for some decisions to be legally effective, it is necessary that the person making the decision has a certain level of understanding. The reason for this is very simple: it is to protect against abuse or exploitation of a person who may be made vulnerable by impaired decision-making capacity. It also helps other people who may be affected by a decision to know where they stand.”¹

2. When an individual has the level of understanding sufficient to make a legally binding decision he is said to have the “capacity” to make that decision. In certain circumstances, the individual’s capacity to make decisions for himself may be impaired by his physical or mental condition. Decisions may still need to be made, however, particularly when they affect the individual’s health and wellbeing. There is therefore a need for the law to provide a mechanism for decision-making where the individual’s capacity is impaired.

3. This consultation paper is concerned with two specific circumstances, both relating to decision-making for persons who are unable to make those decisions at the time of execution of the associated action. The first relates to decisions made by a third party in respect of the medical treatment and the management of property and affairs of persons who are comatose or in a vegetative state. The second relates to advance decision-making by the individual himself as to the health care or medical treatment he wishes to receive at a later stage when he is no longer capable of making such decisions. The two aspects of the subject can perhaps best be distinguished or contrasted as being concerned with pre-incapacity decision-making (for persons in the second situation) and post-incapacity decision-making (for persons in the first situation).

Terms of reference

4. On 23 March 2002, the Secretary for Justice and the Chief Justice made the following reference to the Law Reform Commission:

“To review the law relating to:

(a) decision-making for persons who are comatose or in a vegetative state, with particular reference to the management of their property and affairs and the giving or refusing of consent to medical treatment; and

(b) the giving of advance directives by persons when mentally competent as to the management of their affairs or the form of health care or medical treatment which they would like to receive at a future time when they are no longer competent,

and to consider and make recommendations for such reform as may be necessary.”

The Sub-committee

5. The Sub-committee on Decision-making and Advance Directives was appointed in May 2002 to examine and to advise on the present state of the law and to make proposals for reform. The members of the Sub-committee are:

6. The Sub-committee considered the reference over the course of thirteen meetings between 31 May 2002 and 26 March 2004. The recommendations in this paper are the result of those discussions. They represent our preliminary views, presented for consideration by the community. We welcome any views, comments and suggestions on the issues in this Paper, which will assist the Sub-committee to reach its final conclusions in due course.

Acknowledgements

7. We wish to express our particular thanks to the following persons whose advice and assistance have proved invaluable:

Dr P S Shum (former Hospital Chief Executive of Kwai Chung Hospital)

Dr Hung Kin Cheung (Chief of Service, General Adult and Community Psychiatric Service, Castle Peak Hospital)

Professor Chin Hin Chew (former Chairman of the National Medical Ethics Committee, Singapore)

Chapter 1

The concept of capacity and decision-making

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Concept of capacity

1.1 It is presumed at common law that an adult has full capacity unless it is shown that he or she does not. The present law offers a number of tests of capacity depending on the type of decision in issue. Case-law provides answers in some circumstances, and individual statutes contain provisions on capacity in others. However, it is important to distinguish between the legal concept of capacity or incapacity and the medical concept of capacity or incapacity. They may well coincide for certain people in certain contexts, but sometimes they do not.

1.2 A legal incapacity arises whenever the law provides that a particular person is incapable of taking a particular decision, undertaking a particular juristic act, or engaging in a particular activity. Incapacity can arise from a variety of conditions. Historically, these included being under the age of majority, or a married woman, or of unsound mind. Under the modern law, a great many different approaches have developed to the question of capacity based on mental state, and capacity is judged in relation to the particular decision or transaction involved. There is also a basic common law test of capacity, to the effect that the person concerned must at the relevant time understand in broad terms what he is doing and the likely effects of his action. Thus, in principle, legal capacity depends upon understanding rather than wisdom; the quality of the decision is irrelevant as long as the person understands what he is deciding. However, the basic test has been adapted ad hoc to meet specific situations and the precise test now employed by the common law or statute may differ according to the situation. The English Law Commission pointed out in its 1991 Consultation Paper on mentally incapacitated adults that the Mental Health Act 1983 itself contains different approaches, with that adopted for compulsory admission to hospital differing from that applied to guardianship and the management of property and affairs.² The Commission said:

“Statutory tests for other purposes may resemble the diagnostic categories set out in the Mental Health Act 1983 or may follow the common law principles or may not greatly resemble either. For certain purposes, such as compulsory admission to hospital, a test may include people who are quite capable of taking the decision, in the sense that they understand what it is and what it will mean, but are nevertheless suffering from such a degree of mental disorder that it is thought appropriate to take the decision out of their hands, either in their own interests or for the protection of others. … A lawyer might say that such people were legally incapacitated from deciding whether or not to remain in hospital. Others, however, might draw a distinction between those who are unable to take any decision at all and those whose particular delusional system, lack of insight or otherwise abnormal mental state leads them to take irrational or unwise decisions.”³

1.3 Turning to the capacity required under the Mental Health Act 1983 for the management of property and affairs, the English Law Commission observed:

“The powers of the judge or Master of the Court of Protection are exercisable when the court is satisfied, after considering medical evidence, that ‘a person is incapable, by reason of mental disorder, of managing and administering his property and affairs [Mental Health Act 1983, s.94(2)]’. The definition of mental disorder is the very broad one … but the emphasis is on assessment of functional capacity rather than diagnostic categories. Specialist medical evidence is not statutorily required, although it may be necessary if the issue is disputed. Where conflicting medical evidence is presented, it is for the court to decide which to prefer.”⁴

1.4 Decision-making capacity is not a medical or psychological diagnostic category; it rests on a judgement of the type that an informed person might take.⁵ If the issue of capacity comes before a court because there is a dispute or because a legal determination of capacity is required for some purpose, the judge makes his determination not as a medical expert but as a lay person on the basis of evidence from the patient’s doctors, others who know him, and possibly from personal observation.⁶

Causes of mental incapacity

1.5 Mental incapacity may arise from a number of different causes. It may be caused by:

• a congenital intellectual disability

• brain damage brought about by injury or illness

• dementia

• a psychiatric condition

• substance abuse

Dementia

1.6 Dr Mavis Evans, Consultant Psychiatrist in Old Age of Clatterbridge Hospital in the United Kingdom, in her article Dementia⁷ described dementia as “a global impairment of intelligence, memory and personality, in clear consciousness”. Her view is that dementia can occur at any age but becomes more frequent with age, with a prevalence of 5% - 10% in persons over 65 and 20% in persons over 80. She has also listed various diseases which are associated with dementia. These include:

• Alzheimer’s disease

• Lewy Body disease

• Multi infarct dementia (arteriosclerotic dementia)

• Alcoholic dementia

• AIDS related dementia

• Parkinson’s disease

• Toxic or traumatic injury

• Malignant disease

Dr Evans adds that dementia is a descriptive name for the group of symptoms and signs seen in these conditions.

1.7 The 1999 report prepared by the Working Group on Dementia (the “working group”) set up by the Elderly Commission in Hong Kong has similar observations regarding the causes, signs and symptoms of dementia:

“[It] is a pathological state characterised by gradual decline in intellectual function that occurs in clear consciousness. It is not a process of normal ageing. It is a disease.

2. There are many causes for dementia. The commonest cause is Alzheimer’s disease, an irreversible degenerative disorder of the brain, followed by vascular dementia. Commonest reversible causes are drugs, depression and metabolic causes like hypothyroidism. Risk factors for Alzheimer’s disease include ageing, family history of dementia and Down’s syndrome. Other possible risk factors include head injury.

3. The typical clinical course in dementia is progressive decline in mental and physical functions, leading to total dependence on others and requiring multiple levels of services. The course is variable and can last up to 15 years. The average survival is 8-10 years.”⁸

1.8 The 1999 report further outlined four stages of the clinical course of dementia:

“(a) Very early stage – mild memory impairment, subtle personality changes, diminished interest and skills, emotional distress ….

(b) Early stage – more severe memory impairment (especially short-term memory for recent events), and deterioration in self control ….

(c) Middle stage – common problems include wandering, language impairment, disturbing behaviour, delusions and incontinence ….

(d) Late stage – loss of physical agility, becomes bed bound.”⁹

1.9 The 1999 report also remarked that up to 70% of persons suffering from dementia, apart from suffering from gradual cognitive decline, also develop non-cognitive symptoms of dementia. Such non-cognitive symptoms include personality changes, delusions, hallucinations, depression and behavioural problems.

Elderly dementia in Hong Kong

1.10 In line with global trends, Hong Kong’s population is rapidly aging. The 1999 report noted that the number of those aged 65 or above in 1981 was 334,000, and this elderly population had increased to 690,000 by 1998. This figure was said to represent 11% of the total population. The report further said that this rising trend was expected to continue. The working group projected that by 2016, the number of elderly persons in the population would reach 1,080,000, amounting to about 13% of the total population. This is in line with the population projections¹⁰ released by the Census and Statistics Department which show those aged 65 and above would rise to 24% of the total population by 2031.

1.11 The 1999 report referred to a 1997 study¹¹ which found that 25% of those aged 60 and above had some degree of cognitive impairment. The 1999 report further said that the findings of a survey at 57 care and attention homes conducted by the Hong Kong Council of Social Services in 1997 were that, out of the 6,116 residents, 2,261 (about 37%) had cognitive impairment. And another survey in 25 day care centres for the elderly conducted by the Hong Kong Council of Social Services in 1998 revealed that, out of the 1,111 clients, 251 (about 22.6%) had cognitive impairment. The 1999 report also indicated that the findings of these surveys of an overall prevalence of moderate to severe dementia in those aged 65 and above of 4% were similar to the rates found in other countries. The findings of these surveys, however, appear to be at odds with the analysis of the National Long Term Care Surveys (NLTCS)¹² in the USA, which revealed that dementia cases had decreased from 1.3 million (4.7%) in 1982 to 0.9 million (2.5%) in 1999, and that a million fewer cases were found in 1999 than had been predicted by the 1982 rate. The analysis concluded that more recent cohorts were less likely to suffer severe dementia in old age, despite their longer life expectancy.

1.12 Nevertheless, the rapidly aging population will mean that the needs of the elderly, in terms of welfare and health care, will become an increasingly important issue. The legal problems that stem from health care and medical treatment of the elderly will inevitably arise, particularly when the elderly persons are, or are becoming, mentally incapacitated by reason of illness or physical injury.

1.13 In the light of the observations made in the 1999 report, the working group¹³ recommended the promotion of Enduring Powers of Attorney and guardianship. It also suggested that the concept of Advance Directives be studied in the longer term.

Coma

1.14 In relation to the term “coma”, the Brain Injury Association of America provides this helpful explanation:

“Coma is defined as a prolonged state of unconsciousness. The person does not respond to external stimuli. There is no speech, the eyes are closed, and the person cannot obey commands.

When persons experience a brain injury, they can lose consciousness. When the unconscious state is prolonged, it is termed a ‘coma’. A coma is a continued unconscious state that can occur as part of the natural recovery for a person who has experienced a severe brain injury. While in a coma, a person can continue to heal and progress through different states of consciousness. Persons who sustain a severe brain injury and experience coma can make significant improvements, but are often left with permanent physical, cognitive, or behavioural impairments. A coma can last days, weeks, months, or indefinitely. The length of a coma cannot be accurately predicted or known.”¹⁴

Vegetative state

1.15 In 1994, the House of Lords Select Committee on Medical Ethics recommended that the acronym “PVS” (used to denote both “persistent” and “permanent” vegetative state) should be defined and that a code of practice should be developed relating to its management.¹⁵ A working group was subsequently convened by the Royal College of Physicians and endorsed by the Conference of Medical Royal Colleges and their faculties of the United Kingdom. Richard S Harper, a District Judge of the Principal Registry of the Family Division, made a succinct summary of the Working Group’s findings:

"The Working Group recognises that the commonly used acronym 'PVS' can denote either the 'persistent vegetative state' or the 'permanent vegetative state' and could thus lead to confusion. It is therefore recommended that the following terms and definitions should be used:

The vegetative state

A clinical condition of unawareness of self and environment in which the patient breathes spontaneously, has a stable circulation and shows cycles of eye closure and eye opening which may simulate sleep and waking. This may be a transient stage in the recovery from coma or it may persist until death.

The continuing vegetative state (CVS)

When the vegetative state continues for more than four weeks it becomes increasingly unlikely that the condition is part of a recovery phase from coma and the diagnosis of a continuing vegetative state can be made.

The permanent vegetative state (PVS)

A patient in a continuing vegetative state will enter a permanent vegetative state when the diagnosis of irreversibility can be established with a high degree of clinical certainty. It is a diagnosis which is not absolute but based on probabilities. Nevertheless, it may reasonably be made when a patient has been in a continuing vegetative state following head injury for more than 12 months or following other causes of brain damage for more than six months. The diagnosis can be made at birth only in infants with anencephaly or hydranencephaly. For children with other severe malformation or acquired brain damage, observation for at least six months is recommended until lack of awareness can be established."¹⁶

Judge Harper also set out the preconditions for diagnosis of PVS:

"There shall be an established cause for the condition. It may be due to acute cerebral injury, degenerative conditions, metabolic disorders or developmental malformations."¹⁷

Problems of decision-making disability

1.16 The Queensland Law Reform Commission pointed out the problems which decision-making disability may present:

“Where a person with a decision-making disability is unable to make a decision alone, he or she may be able to make that decision with an appropriate level of assistance …. However, some people have a decision-making disability which impairs their decision-making capacity to such a degree that they lack legal capacity to make some or all of their own decisions, either alone or with assistance …. It may mean that the person is unable to make legally effective decisions about matters such as personal welfare and health care, and financial and property management. Yet certain decisions may have to be made: the person concerned may need medical treatment, for example, or it may be necessary to sell the person’s home to arrange alternative accommodation. The problem that arises is that no one has an automatic right to make decisions on behalf of another adult, no matter how closely the two are related …. [A] decision-maker for an adult with impaired decision-making capacity must be legally authorised to act on behalf of the other person before the decision-maker’s decisions have any legal force.”¹⁸

1.17 The present law, which is examined in detail in chapters 3 and 4, is unclear as to who has authority to authorise medical treatment in the case of comatose or vegetative persons, or to manage the property and affairs of the individual in the absence of an enduring power of attorney (which is considered further in Chapter 3 of this paper). In relation to advance directives given by persons when mentally competent as to the form of health care or medical treatment which they would like to receive at a future time when they are no longer competent, there is at present no legal framework to give force to such advance decision making.

Chapter 2

The concept of advance directives

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Advance directives

2.1 The concept of advance directives has been explained as follows:

“An advance directive for health care is a statement, usually in writing, in which a person indicates when mentally competent the form of health care he/she would like to have in a future time when he/she is no longer competent. The development of advance directives is largely derived from the principle of informed consent and the belief in a person’s autonomy in health care decisions.”¹⁹

2.2 An advance directive about health care can also be explained as an “anticipatory decision” about health care which is intended to have effect even if a patient loses the capacity to make such a decision at some future time. Some commentators use the term “living will”²⁰. The key issue arising from this legal concept is the nature and legal effect of the views which have been expressed by the person concerned. It must be emphasised that there is a clear distinction between the legal effect of an advance expression of views and preferences on the one hand, and an advance decision on the other. If the patient has in fact made an advance decision then a further important distinction is to be drawn between the legal effect of a decision in favour of a particular (or all) treatment and a decision against such treatment.²¹

2.3 In his article in the British Medical Journal, George S Robertson (Consultant in the Department of Anaesthesia at Aberdeen Royal Infirmary) has the following comments:

“It is now accepted that a patient who is adequately informed and mentally competent has the right to refuse any proposed medical treatment provided that the refusal does not create a hazard to the health of others.”²²

And

“[b]ecause elderly people are living longer the incidence of illnesses that cause dementia is increasing, and commentators have singled out dementia as being ‘the most common condition for which an advance directive would be appropriate’. The greatest demand for advance directives will probably come from elderly people who are still competent.”²³

2.4 Dr Robertson made the following observations at the conclusion of his article:

“Decisions to limit treatment are an increasingly common feature in the clinical management of patients towards the end of life, and not necessarily only in hospitals with high technology facilities. Advance directives allow patients to influence these decisions by expressing a personal view of the balance between the quality and duration of life.”²⁴

2.5 Advances in clinical treatment and in life-sustaining technologies have prompted debate as to whether the use of life-supporting machines is justified in medically “hopeless” cases, such as those who are terminally ill, or in a persistent vegetative state. The relatives of some of those patients and individual physicians may feel strongly that they should do “everything possible” to prolong life whatever the circumstances, as long as adequate technology is available.

2.6 It is worth noting that in 1999 the Council of Europe adopted the following recommendation:

“… The Assembly … recommends that the Committee of Ministers encourage the member states of the Council of Europe to respect and protect the dignity of terminally ill or dying persons in all respects … by protecting the terminally ill or dying person’s right to self-determination, while taking the necessary measures … to ensure that a currently incapacitated terminally ill or dying person’s advance directive or living will refusing specific medical treatments is observed.”²⁵

2.7 The issues in the debate can be summarised as follows:

“No reasonable arguments have been made that medical professionals shall make final decisions about how long a patient shall live. But, then, who shall make those decisions? Should a professional culture, whether medical or legal, have the final word in making crucial decisions, and to what extent can the law ever have an effective steering function in areas of highly technical decision making and judgement?

Traditional physician ethics of beneficence mandated that the beneficent expert combine ethics and expertise in the craft, making life-and-death decisions without burdening others, particularly the patient, with conflicts in decision making. Such a position made much sense in times when medical possibilities were limited and views of life and death were more or less uniform within the community. But in modern societies, rich with diverse values and wishes manifest in individual expressions and convictions, there is no longer a uniform, general answer to the question of when life-supporting medical interventions should cease ….

All cultures and traditions accept that individuals should not be treated against their will, that is, without giving consent. Weaker and stronger concepts of ‘informed consent’ principles have made it into the textbooks of ethics and medicine and the paragraphs of law books and court decisions. But what about those who cannot give consent because of infirmity, anxiety, dementia, coma, or incompetence? Who shall decide for them, the physicians, the family, or procedural standards set up by providers or payees of medical services? Here is where advance health care planning and surrogates for health care decision making come in. The following question also arises: How much self-determination and power to direct care and treatment decisions can be entrusted to those who are no longer competent in the strict legal sense? …

... in cultures where self-determination and individual autonomy and choice play a primary role in day-to-day life, competent and risk-aware adults will favour the execution of medical care directives in advance just as they write wills and employ other strategies, legal and nonlegal, to reduce future risk that their wishes will not be carried out.”²⁶

Chapter 3

Mentally incapacitated persons: existing statutory provisions

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Introduction

3.1 In this chapter, we examine the existing statutory provisions which aim to provide protection for mentally incapacitated persons in respect of their health care, their consent to medical treatment, and the management of their property. The shortcomings and other areas of concern in the law in this context will be considered later in this consultation paper.

3.2 We have seen in chapter 1 that mental incapacity may be caused by disease or physical injury. As pointed out earlier, Hong Kong’s population is rapidly ageing and there is a significant incidence of moderate to severe dementia in those aged 65 and above. A survey conducted by Deloitte and Touche Consulting Group in 1997 found that in the elderly population, 25% of those aged 60 and above had some degree of cognitive impairment. These findings highlight the problem of decision-making for mentally incapacitated persons in respect of their health care, medical treatment, and the management of their property and affairs.

3.3 Obviously, the question of decision-making applies equally to persons who are comatose or in a vegetative state. The need for decisions to be made in relation to such persons’ health care and medical treatment, as well as the management of their property and affairs, arises almost daily. The Queensland Law Reform Commission has pointed out:

“The problem that arises is that no one has an automatic right to make decisions on behalf of another adult, no matter how closely the two are related. … a decision-maker for an adult with impaired decision-making capacity must be legally authorised to act on behalf of the other person before the decision-maker’s decisions have any legal force. …”²⁷

Mental Health Ordinance (Cap 136)

3.4 In Hong Kong, the statute law relating to mental incapacity is principally consolidated in the Mental Health Ordinance (Cap 136). The key parts of the Mental Health Ordinance for our purposes are:

• Part II, which deals with the management of property and affairs of mentally incapacitated persons.

• Part IVA, which provides for a Mental Health Review Tribunal.

• Part IVB, which provides for Guardianship.

• Part IVC, which regulates consent to medical and dental treatment.

3.5 The Mental Health Ordinance contains a range of provisions that deal with the property and affairs, as well as medical and health care, of persons who are mentally incapacitated. As stated in its Long Title, the Ordinance provides for the following:

(a) the care and supervision of mentally incapacitated persons;

(b) the management of the property and affairs of mentally incapacitated persons;

(c) the reception, detention and treatment of mentally incapacitated persons who are mentally disordered persons or patients;

(d) the guardianship of mentally incapacitated persons who are mentally disordered persons or patients, and for mentally incapacitated persons generally;

(e) the giving of consent for treatment or special treatment in respect of mentally incapacitated persons who have attained 18 years of age; and

(f) the removal of objectionable terminology relating to mental incapacity in other statutory provisions and to provide for matters incidental or consequential thereto.

3.6 “Mental incapacity” is defined in section 2 to mean “mental disorder” or “mental handicap.” Section 2 defines “mental disorder” as:

“(a) mental illness;

(b) a state of arrested or incomplete development of mind which amounts to a significant impairment of intelligence and social functioning which is associated with abnormally aggressive or seriously irresponsible conduct on the part of the person concerned;

(c) psychopathic disorder; or

(d) any other disorder or disability of mind which does not amount to mental handicap.”

“Mental handicap” means “sub-average general intellectual functioning with deficiencies in adaptive behaviour”.²⁸ Also relevant to interpretation is the meaning of “patient” in section 2, which is defined as “a person suffering or appearing to be suffering from mental disorder”.

Management of property and affairs of mentally incapacitated persons

Court’s power

3.7 Part II of the Mental Health Ordinance generally empowers the court, on application, to make an order directing enquiry as to whether any person who is alleged to be mentally incapacitated is incapable, by reason of mental incapacity, of managing and administering his property and affairs.²⁹

3.8 The other key provisions of Part II of the Mental Health Ordinance are:

• the application may be made by any relative of the person alleged to be mentally incapacitated, but if no such application is made by the relative, then it may be made by the Director of Social Welfare, the Official Solicitor, or any guardian of that person appointed under Part IVB,³⁰

• the application must be accompanied by two medical certificates and evidence from the mentally incapacitated person’s relatives or next-of-kin and such other evidence as may be required by the Court,³¹

• the Court may with respect to the property and affairs of a mentally incapacitated person, do or secure the doing of all such things as appear necessary or expedient for the maintenance or other benefit of that person, or