7.1 Introduction
The population of Hong Kong is ageing rapidly. Twenty per cent of the population was aged 65 or above in 2021, a percentage that is projected to reach 34% by 2066.Footnote 1 Hong Kong also has the highest average life expectancy in the world.Footnote 2 The increasing number of older people, coupled with rising life expectancy and the impact of chronic illness on physical, psychological and social well-being, suggests that the demand for high-quality end-of-life palliative care services will only continue to increase.
Despite the ever-escalating demand for long-term care, end-of-life care in Hong Kong remains underdeveloped. According to the Economist Intelligence Unit’s Quality of Death Index, an instrument used to highlight advances in, the challenges of and gaps in end-of-life care policy and infrastructure in 80 countries worldwide, Hong Kong ranks relatively low at 22nd.Footnote 3 A good example of the policy and infrastructure gaps in end-of-life care in Hong Kong is the poor uptake of the advance directive (AD), or a statement in which a competent person makes an advance healthcare decision that is to be implemented in the event that the person loses capacity in the future. This is despite the generally accepted view internationally, which is that the use of an AD can encourage discussions about patients’ care-related preferences and values, as well as provide clear documentation and facilitate regular review of such preferences and values.
This chapter first outlines the historical and current developments of ADs in Hong Kong. It then examines a number of legal and practical challenges in promoting the wider use of ADs in Hong Kong, including deficiencies in mental capacity law and inadequate promotion. The remainder of the chapter is divided into five parts. Section 7.2 traces the development of ADs in Hong Kong, leading up to the latest government proposal which is detailed in Section 7.3. Section 7.4 provides commentary on the legal obstacles that must be overcome for AD legislation to be successfully introduced in Hong Kong. Section 7.5 explores the local practice of ADs, as well as the sociocultural values and influences that shape this practice.
7.2 The Legal Framework: Historical Developments
Hong Kong currently lacks both a statute and local case law clarifying the legal status of ADs, although a legislative framework (discussed later in the chapter) has recently been proposed by the government. The common law principles in relation to informed consent with respect to medical treatment are generally applicable in making valid ADs to refuse life-sustaining treatment legally binding,Footnote 4 although, given the lack of relevant case law, it is unclear how such principles will be applied in individual cases. This is not to say that efforts to specify legal rules and/or guidance for ADs have not been made over the years. What follows is an outline of AD-related discussions and policy developments in the past two decades, which can be broadly divided into three stages.
7.2.1 Stage 1, 2002–2009: HKLRC Consultation
In 2002, the Hospital Authority, a statutory body that manages all government hospitals and institutions in Hong Kong, issued the first edition of the Hospital Authority Guidelines on Life-Sustaining Treatment in the Terminally Ill. This was primarily written as an elaboration of the section on “care for the terminally ill” in the Professional Code and Conduct of the Medical Council of Hong Kong,Footnote 5 but as part of its guidance, there was a brief discussion of ADs. In particular, it was stated that reference was to be made to the practice in the United Kingdom,Footnote 6 as detailed in section 10 of the British Medical Association Guideline on Withholding and Withdrawing Life-prolonging Medical Treatment (1999).Footnote 7 Apart from stating that a valid AD refusing life-sustaining treatment must be respected, section 10 provided various principles as to how validity of ADs were to be determined, as well as their legal effect.
In 2004, the Hong Kong Law Reform Commission (HKLRC) issued a public consultation paper entitled Substitute Decision-Making and Advance Directives in Relation to Medical Treatment,Footnote 8 the results of which were published in a report in 2006.Footnote 9 In this report, the HKLRC recommended that the government promote the concept of ADs under the existing common law framework instead of by legislation, as it was considered premature to legislate while the concept of ADs was still new to the community.Footnote 10 The government was recommended to review its position and reconsider the appropriateness of legislation once the community had become more familiar with the concept.Footnote 11 While noting that the lack of an agreed form of AD would likely lead to difficulties and uncertainty for both patients and doctors,Footnote 12 the HKLRC rejected the option of legislating a statutory form due to the prematurity of legislation at that stage.
In response to the HKLRC’s report, the Hong Kong Food and Health Bureau (FHB) issued a consultation paper in 2009 entitled Introduction of the Concept of Advance Directives in Hong Kong,Footnote 13 with stakeholders consulted on (i) the procedures for making, altering and revoking ADs, (ii) the content of the information package on ADs for the public, and (iii) the need to promulgate guidelines for handling ADs. The majority of views it received agreed that a non-legislative approach to AD promotion should be adopted in Hong Kong.
7.2.2 Stage 2, 2010–2019: Hospital Authority Initiatives
In 2010, the Hospital Authority issued Guidance for Hospital Authority Clinicians on Advance Directives in AdultsFootnote 14 for the reference of clinicians working in Hospital Authority hospitals.Footnote 15 This contained a model AD form that was based on that of the HKLRC. The guidance was then updated in 2014. The changes introduced included (i) the provision of a shorter version of the AD form for terminally ill patients refusing CPR only and (ii) the extension of the scope of application of ADs such that, in addition to (a) terminally ill and (b) in a persistent vegetative state or a state of irreversible coma, a new category of ‘other end-stage irreversible life-limiting condition[s]’ was added.
In 2014, the Hospital Authority also issued Guidelines on Do-Not-Attempt Cardiopulmonary Resuscitation (DNACPR). Under these guidelines, the doctors in charge of non-hospitalised patients could sign a DNACPR form on their patients’ behalf if there was a valid and applicable AD refusing cardiopulmonary resuscitation (CPR). The doctors signing this form would certify that the AD was valid, and that the patient was already in a condition in which the AD would apply.Footnote 16 This was designed to assist ‘emergency rescue personnel’ to respect the patient’s advance decision,Footnote 17 but this approach was not accepted by the ambulance services in Hong KongFootnote 18 due to concern over the ‘duty to resuscitate’ in the Fire Services Ordinance (FSO). This will be discussed further later in the chapter.
7.2.3 Stage 3, 2019–Present: Reforms
In 2019, the FHB issued a public consultation paper entitled End-of-Life Care: Legislative Proposals on Advance Directives and Dying in PlaceFootnote 19 to consult the public on several proposals, including (i) whether to codify the current common law position in respect of ADs and strengthen the safeguards attached to them and (ii) whether to remove the legislative impediments to AD implementation by emergency rescue personnel. In the consultation paper, the FHB acknowledged that the lack of AD legislation in Hong Kong had created practical difficulties in AD implementation and, in particular, posed two concerns.Footnote 20 First, as a result of the lack of legal guidance on ADs, healthcare professionals may be unwilling to initiate discussions with patients about ADs or implement their ADs owing to concerns that they may not have legal protection in doing so. Second, it is unclear whether an AD would supersede another statutory provision if the two were in conflict.Footnote 21 In July 2020, the FHB released a consultation reportFootnote 22 mapping out the way forward. Significantly, according to the report, the government considered that it was now an appropriate time to consider AD legislation. Introducing a consistent legal framework for ADs could remove conflicts with other laws and policies and afford protection to treatment providers (including health care professionals and emergency rescue personnel) acting in good faith and with reasonable care.
7.3 The Legal Framework: Legislative Proposal
The legislative framework proposed by the government in its 2019 consultation paper is built on four fundamental principles:
(i) The patient’s right to self-determination must prevail in the case of conflict between the wishes of the patient and those of his family members.
(ii) A valid and applicable AD overrides treatment decisions based on a treatment provider’s interpretation of the patient’s best interests.
(iii) Individuals have primary responsibility for ensuring that the original copy of their AD is presented to treatment providers as proof of a valid AD.
(iv) Sufficient safeguards need to be provided to preserve lives – if any grounds for doubt about the validity or applicability of an AD, treatment providers must continue to provide clinically indicated emergency life-sustaining treatments.
The key features of the legislative proposal,Footnote 23 which for the most part track the guidance issued by the Hospital Authority, are as follows:
7.3.1 Definition and Scope
An AD must be made by a mentally competent person who is aged 18 or above.Footnote 24 Life-sustaining treatments (including artificial nutrition and hydration) are considered a type of medical treatment that can be withheld or withdrawn from a patient in accordance with his AD. The pre-specified conditions of an AD include (i) terminal illness; (ii) a persistent vegetative state or state of irreversible coma; and (iii) other end-stage irreversible life-limiting conditions. An AD cannot include (i) a refusal of basic and/or palliative care that is essential to keep a person comfortable, such as nursing care and pain relief; (ii) a refusal of the offer of food and drink by mouth; or (iii) anything that is against the law, such as euthanasia.
In terms of the form of the AD, the government is proposing to use a non-statutory model rather than a statutory prescribed form.Footnote 25 However, ADs not made in that form would still be accepted if they contained statements that are clearly written and unambiguous. A person may choose to adopt other AD forms to set out other (additional) pre-specified conditions.
An AD will take effect when the person concerned no longer has the capacity to make healthcare decisions. An AD will not be applicable (i) if the patient has the capacity to make a decision at the time the treatment concerned is proposed; (ii) if the decision to be made concerns treatments or conditions not specified in the AD; or (iii) if there are reasonable grounds for believing that the patient did not anticipate the current circumstances and, if he had, he might have made a different decision.
7.3.2 Formalities
Turning to the formalities, the government proposes mandating that the making and modification of an AD must be in writing to be legally valid, which would also serve to reduce uncertainty and potential disputes concerning validity. In contrast, no unnecessary hurdles should be imposed upon those wishing to revoke an AD, and so it is proposed that both verbal and written revocations be considered valid.
As to witnessing, the government has proposed adopting the same arrangements as those currently practised by the Hospital Authority, of which there are two notable features. The first is that the making and modification of an AD requires two witnesses, one of whom must be a medical practitioner. As part of the witnessing requirement, a capacity test for the making of the AD is included, namely that the medical practitioner should be satisfied that the person has capability to make an AD, and has been informed of the nature and effect of the AD and the consequences of refusing the treatments specified in the AD.Footnote 26 The second is that revocation can be made verbally or in writing. No witness is required for written revocation, but at least one witness who has no interest in the estate of the person making the AD is required for verbal revocation, and a second witness is required for the report of verbal revocation made by a single family member or carer. A person can also revoke his own AD by tearing it up or otherwise destroying it or asking some other person to do so in his presence and by his direction.
There will not be any central registry for AD, but a flagging alert is currently set up within the Hospital Authority Clinical Management System (CMS) to facilitate communication, even though the information contained therein is used only as a reference. The government is currently considering the feasibility of leveraging the existing Electronic Health Record Sharing System (eHRSS) to store and allow access to AD records by designated healthcare professionals and of accepting certified true copies of ADs to ensure that a patient’s trusted family members or carers can produce the AD in timely fashion. Original AD documents would still be required as proof because storing records in the eHRSS is voluntary and there might be the possibility of a time lag between the latest status of the AD and its record in the eHRSS. Further, given that it may not be practicable to require emergency rescue personnel to first find out the eHRSS record of an AD while carrying out resuscitation at the same time, the government is also proposing that emergency rescue personnel may rely on the production of an original AD document attached to a signed DNACPR form, and it would be the responsibility of the individual/family to draw the attention of emergency rescue personnel to the existence of the AD.
7.3.3 Safeguards
The following safeguards are required to be implemented to ensure the validity of an AD. First, in normal circumstances, the original copy of the AD should be presented. If a valid AD is said to exist, but the original copy is not immediately available, the treatment provider should continue to provide emergency life-sustaining treatment while waiting for clarification. However, if the treatment provider (e.g. a clinical team) knows that a valid and applicable AD exists and the patient’s family members agree, then the patient’s advance refusal of such treatment should be respected.Footnote 27
Second, the AD should be sufficiently clear and not under challenge, for example on the grounds of undue influence or lack of capacity. If an AD is challenged at the scene, its validity must be regarded as in doubt, and the treatment provider should continue to provide emergency life-sustaining treatment while waiting for clarification. Third, the AD must not have been withdrawn. Finally, the person must not have done something that clearly goes against the AD, thereby suggesting that he has changed his mind.
Safeguards should also be afforded to treatment providers. They should not incur any civil or criminal liability (i) for carrying out or continuing a treatment if, at the time, they reasonably believe that a valid and applicable AD does not exist or (ii) for the consequences of withholding or withdrawing a treatment from an individual if, at the time, they reasonably believe that a valid and applicable AD exists. The same applies to CPR emergency rescue with/without a DNACPR form.
7.3.4 Non-hospital Settings
In an emergency situation, when an unconscious patient with impending cardiac arrest is seen by emergency rescue personnel, it can be difficult for them to tell whether the patient is in a condition specified in his AD. Accordingly, the Hospital Authority developed guidelines and a DNACPR form (specifying that CPR not be performed on a person when cardiac arrest is anticipated) for non-hospitalised patients in 2014. Doctors who sign the DNACPR form certify that the AD is valid and applicable. The government is now proposing the following: (i) that after ADs are legislated, emergency rescue personnel should respect a valid and applicable AD presented to them; (ii) to amend the FSO accordingly to enable such personnel to accept DNACPR forms (with or without an AD);Footnote 28 and (iii) to use a statutory prescribed DNACPR form for the sake of simplicity, instead of a non-statutory prescribed form.
7.4 Discussion
While the move to legislate on ADs is a welcome one, there remain legal obstacles to overcome. The government has stated that it is not prepared to enact all-encompassing legislation on mental incapacity, which would impact upon such areas as ADs, healthcare decision-making by attorneys and guardianship.Footnote 29 It is also unlikely for the government to overhaul the outdated mental health legal regime in Hong Kong. Consequently, the piecemeal attempt of the government at codifying the law on ADs is inadequate for two reasons. The first relates to inconsistencies or ambiguities in existing law. In addition to proposing separate legislation on ADs, the HK government is also currently proposing new legislation on continuing powers of attorney, which will cover health, welfare and other personal matters. These new laws will add to existing decision-making tools, such as enduring powers of attorney. Such a piecemeal approach to legal regulation fails to take into account the fact that these are all components in the overall promotion of autonomy of the individual concerned, and need to be viewed in this larger context. Without an overhaul of mental health law in Hong Kong that considers all of these tools in a holistic manner, there may be ambiguities in the definitions of legal terminology and unclear overlapping boundaries or even inconsistencies between different legal tools.Footnote 30
The second reason is that the lack of an overarching mental capacity test results in ambiguity as to what the test for mental capacity in relation to the making of ADs in Hong Kong should be. As discussed previously, the proposed formulation is that the medical practitioner must be satisfied that the person has the capability to make an AD, but what this capability entails is not further elaborated upon. There are several formulations of the capacity test that may apply, as detailed next.
Common law. The common law test for capacity that applies in Hong Kong is the test as developed by case law in the United Kingdom prior to the enactment of the Mental Capacity Act 2005. The steps of this test are generally taken to be the three steps as described in the foundational case of Re CFootnote 31, namely: (i) whether the patient is capable of understanding and retaining the treatment information; (ii) whether the patient believes it; and (iii) whether the patient is capable of weighing that information, balancing risks and needs. In the context of ADs, further principles as to the scope of anticipatory refusals can be found from the cases of Re T and BlandFootnote 32. Taken together, these cases and principles demonstrate how one’s capacity to make an AD should be assessed, looking at both (i) the individual’s ability to refuse a particular medical treatment and (ii) whether or not the individual intended for the anticipatory refusal to apply to the future circumstances in question.
Mental Health Ordinance. The MHO contains a different capacity test for the consent to treatment of mentally incapacitated persons, which, for this part of the MHO, is defined as either (i) a ‘patient’, or a person suffering or appearing to be suffering from mental disorder or (ii) a ‘mentally handicapped person’, or a person with sub-average general intellectual functioning with deficiencies in adaptive behaviour.Footnote 33, Footnote 34 The test, as contained in section 59ZB(2) of the MHO, is whether the person is capable of understanding the general nature and effect of the treatment or special treatment. Putting the flaws of this test to one side,Footnote 35 this is a different test for capacity to the consent of treatment that only applies to individuals defined as mentally incapacitated in the MHO, suggesting that, for such individuals, the section 59ZB(2) test should be used instead of the common law Re C test to assess the individual’s ability to refuse that treatment. If this is to be the correct approach, how do we justify and reconcile the fact that two different tests are being used in the same context?
Hospital Authority guidelines. In addition to the two legal tests described previously, other relevant capacity tests have been laid out in various guidelines issued by the Hospital Authority. While these tests are not legally binding, they constitute the practice guidance that doctors in the public sector follow when implementing the law, and thus are worthy of consideration. Two formulations of the test for capacity are laid out here:
(i) ‘A competent adult is defined as one with decision-making capacity, which consists of the elements of (i) the ability to understand the medical information presented; (ii) the ability to reason and consider this information in relation to his own personal values and goals; and (iii) the ability to communicate meaningfully.’ (from the Hospital Authority’s Guidelines on In-Hospital Resuscitation Decisions, issued in 1998).
(ii) ‘To demonstrate capacity to refuse treatment, individuals should be able to:
a. Understand in simple language what the medical treatment is, its purpose and nature and why it is being proposed;
b. Understand its principal benefits, risks and alternatives;
c. Understand in broad terms what will be the consequences of not receiving the proposed treatment;
d. Retain the information for long enough to make an effective decision;
e. Use the information and weigh it in the balance as part of the decision-making process;
f. Make a free choice (i.e. free from pressure).’ (Adopted from the British Medical Association in the Hospital Authority’s most recent Guidelines on Life-sustaining Treatment in the Terminally Ill (2020)).
Both of these formulations are notably different from the two legal tests described previously, with the 1998 and 2020 formulations additionally requiring a higher level of reflection and a voluntariness requirement, respectively, which are not generally required for decisional capacity as defined by the law. In addition to contributing to the chaos that is the definition of mental capacity in this context in Hong Kong, the fact that the Hospital Authority saw it necessary to lay out its own tests for capacity suggests that they felt that the current position was inadequate, or at least not clear enough.
Thus, while the legislative initiative for ADs is no doubt welcome, the importance of legislating a unified, statutory capacity test cannot be understated. The unwillingness of the government to deal with this issue may cause ambiguity and difficulty in the implementation of ADs by medical practitioners in the long run.
7.5 Local Practice, Value Commitments and Sociocultural Influences
Turning to the practice of ADs in Hong Kong, the number of ADs signed in recent years has been on the rise. The number of ADs signed by Hospital Authority patients between the years of 2012–18 is as follows:Footnote 36
| Year | Month | Number of ADs signed |
|---|---|---|
| 2012 | From August 21 to December 31 | 150 |
| 2013 | From January 1 to December 31 | 325 |
| 2014 | From January 1 to December 31 | 491 |
| 2015 | From January 1 to December 31 | 706 |
| 2016 | From January 1 to December 31 | 937 |
| 2017 | From January 1 to December 31 | 1395 |
| 2018 | From January 1 to December 31 | 1557 |
| Total number of ADs signed | 5561 | |
There has been some suggestion that this tenfold increase in the number of signed ADs is not indicative of an increase in awareness or acceptance of ADs generally, but rather a result of the changing demographic of service users of the Hospital Authority, who take care of a disproportionately high percentage of persons with life-limiting illnesses.Footnote 37 This is consistent with empirical research that has demonstrated both a low level of awareness and a low uptake of ADs in Hong Kong.Footnote 38
While the general lack of awareness about ADs may be readily explainable by inadequate promotion and education,Footnote 39 an interesting phenomenon that warrants further investigation is what appears to be a discrepancy between positive attitudes towards ADs and the actual making of ADs. For example, Chan et al.’s study (2019) found that, while only 368 of their participants (18.4%) had heard of ADs, the vast majority of those (80.2%, or 295 people) said they had made or intended to make an AD.Footnote 40 Out of these 295 people, however, only 11 of them had actually made an AD (i.e. only 3.7%). While not all studies have been able to demonstrate such a high level of positivity in attitude towards ADs,Footnote 41 there remains a significant discrepancy between reported attitudes towards ADs and actual uptake of ADs.
Although the reason for this discrepancy requires further study, some preliminary comments may be offered. There is of course the question of whether such positive attitudes towards ADs as reported by patients are reflective of their true preferences, but, assuming that they are, there appears to be some difficulty in the translation of that preference into action. This could be due to several reasons, two of which are briefly explored here. The first is resistance from family members and/or caregivers. Studies have shown that family members often feel compelled to maintain the patient’s life, and are unwilling to forgo life-sustaining treatment. This stems from a strong belief in Confucian filial piety, according to which ‘everything must be done’ to save the patient, even if this may not be in line with the patient’s own preferences.Footnote 42 This resistance from close family members can be a crucial factor contributing to the failure of the person to make an AD, because the unit of decision-making in Chinese culture, and in particular medical decision-making, is generally seen as the family.Footnote 43 As Fan and Li have argued, families are autonomous entities that are themselves the source of legitimating authority.Footnote 44 Because the family is the autonomous unit, medical decisions need to be made by the family as a whole, and not by the person herself.Footnote 45 This means that where there is strong objection from the family, the person will not likely proceed with an AD even if that is her preference. There is thus a need to encourage not only education and promotion targeted towards individuals who might wish to make ADs, but also their family members, such that open discussions between family members about one’s end-of-life preferences can be encouraged. This, in turn, will make it more likely that family support for a decision to make an AD can be obtained, making the individual more likely to proceed with the AD.
The second reason is the lack of effective communication and coordination on the part of healthcare and other professionals regarding the making of ADs. While a person may be inclined to make an AD, a number of institutional factors may have a large effect on whether this is put into action. Cheung et al., for example, present a compelling case of “unprepared healthcare professionals and healthcare system” as one of the barriers to advance care planning more generally.Footnote 46 One of the various examples of this was a patient’s experience with an oncologist, who kept persuading him to receive treatment despite an expressed reluctance to receive futile life-sustaining treatment. Chan et al.’s study also sheds some light on the importance of the role of healthcare professionals. When asked, the majority of their participants expressed that they would agree to making ADs (to varying degrees) in the following scenarios: (i) if healthcare professionals can provide a clear explanation and recommendation on ADs, (ii) if there is effective communication and coordination among healthcare professionals at different institutes to execute their decisions, and (iii) if they could have a thorough discussion and follow-up with health professionals about ADs. This demonstrates the importance of healthcare professionals in facilitating the process of making an AD, and is consistent with the significant trust that is placed in medical practitioners by patients in Chinese culture.Footnote 47
7.6 Conclusion
In light of Hong Kong’s rapidly ageing population, and the resulting, inevitable increase in the demand for high-quality end-of-life palliative care services, there is a crucial need to identify and examine policy and infrastructure gaps in end-of-life care in Hong Kong. One key area that needs to be addressed is the regulation and implementation of the AD, an important tool that encourages discussions about end-of-life care and allows for an individual’s wishes to be clearly documented and carried out. This chapter has first examined the legal and institutional framework of ADs in Hong Kong, in particular the government’s latest proposal in legislating ADs which is a positive step in the right direction despite some remaining legal obstacles to overcome. The chapter then highlighted the socio-familial influences that may hinder the government’s attempt to expand the take up of ADs. In a society where the family is often seen as the unit for healthcare decision-making, and Confucian doctrines like filial piety are a driving force behind the behaviour of family members at the end of life, the AD is perhaps even more important as a way to initiate end-of-life care discussions with one’s family, so as to make clear one’s wishes to the family and engender support from the family for one’s end-of-life care preferences.
Hong Kong has come a long way since the Hospital Authority first included a discussion of ADs in its 2002 Guidelines for Life-sustaining Treatment in the Terminally Ill. While the government’s proposal for AD legislation is a significant step towards facilitating large-scale uptake of ADs across Hong Kong, there remain both legal and practical obstacles that need to be confronted. In relation to the former, the validity and application of an AD rely heavily on a workable and consistent definition of mental capacity, which is something that Hong Kong does not currently have and will not likely have in the near future. In relation to the latter, the inadequacy of promotion and education about ADs needs to be tackled on a systematic basis, to address the clear gaps in awareness across Hong Kong society. This promotion and education needs to target not only individuals who may make ADs, but also family members and caregivers, whose insufficient understanding of ADs may currently prevent them from supporting the making of ADs by their family members.Footnote 48 Improvement of support from healthcare professionals at the institutional level is another key area that needs to be urgently addressed. Finally, because empirical research in this area in Hong Kong has mostly focused on the making of ADs, there is little to no information about the interpretation and implementation of ADs by healthcare professionals. This is a gap that needs to be addressed – a better grasp of how ADs are implemented after they are signed is crucial to our understanding of ADs in the Hong Kong context.
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