Casebook on Ethical Decision-Making in End-of-Life Care
of Older Adults
Advance Care Planning and Advance Directives in Hong Kong: Concepts and Developments
- Dr. Tse Chun Yan, Chairman, HA Clinical Ethics Committee (2005 to 2017)
With contemporary development in medical technologies, many life-sustaining treatments can still be offered near the end of life. However, some of these only prolong the dying process, doing more harm than good, and are against the patient's wishes. It is generally agreed that such futile treatments may be withheld or withdrawn in suitable situations.1 Firstly, when a competent patient decides not to receive a life-sustaining treatment (LST), the refusal must be respected. Secondly, for an incompetent patient, when the healthcare team and the family members consider that the treatment is not in the patient's best interests, the treatment can be withheld or withdrawn. However, deciding what is in the patient's best interests often involves not only medical considerations, but also quality of life considerations which can be value laden. If the prior preferences or values of the incompetent patient are not known, there could be difficulties for the healthcare team and family members to reach consensus.
Such difficulties could be alleviated if the patient, while competent, has made an advance decision refusing certain LSTs. The person may specify what LST one does not want under what situations (e.g. terminally ill or irreversible coma). In Hong Kong, the term Advance Directive (AD) usually refers to this. In some other countries, such advance refusal is called a "living will", and the term AD may also include appointment of a proxy decision maker on healthcare issues. Under the common law framework in Hong Kong, according to the Law Reform Commission of Hong Kong (LRC) Report on AD in 2006,2 a valid and applicable AD refusing medical treatment has the same effect as a contemporaneous oral instruction, and must be respected. However, a proxy directive on healthcare issues currently does not have legal status in Hong Kong.
Development of guidelines on AD
ADs were seldom discussed among healthcare professionals or among the public in Hong Kong until 2004, when LRC issued a public consultation paper on ADs. In 2006, LRC released her report on the issue, recommending ADs to be promoted under the existing common law framework instead of by legislation. LRC further proposed a model AD form, the scope of which is limited to the terminally ill, irreversible coma, and persistent vegetative state. But it is not the only format of ADs that can be used under common law. In 2009, Health and Food Bureau of the Government of HKSAR issued the Introduction of the Concept of Advance Directives in Hong Kong Consultation Paper.3 In the Paper, the Government expressed no intention to advocate the public to make ADs, but suggested to provide more information to the public about the concept of an AD, and to have guidelines for professionals. Furthermore, the Paper considered whether to promote the concept of advance care planning (ACP) in Hong Kong.
In 2010, the Hospital Authority of Hong Kong (HA) issued the Guidance for HA Clinicians on Advance Directives in Adults, and revised the Guidance in 2014 and 2016.4 The HA AD form was modified from the LRC model form. In its 2010 version, the scope of the HA AD form was limited to the terminally ill, irreversible coma, and persistent vegetative state. Upon revision in 2014, a new category "other end-stage irreversible life-limiting condition" (such as end-stage renal failure, end-stage chronic obstructive pulmonary disease, and end-stage dementia, etc.) was added. According to the Guidance, the validity of an AD may be doubted if:
- the AD is ambiguously drafted,
- the AD was not properly signed,
- there are claims or suggestions that the patient had been under undue influence at the time of making the AD,
- there is reason to suspect that the patient was not competent or was not properly informed when the AD was made, or
- the patient has done something that clearly goes against the advance decision which suggests that he/she has changed his/her mind.
An AD becomes applicable when the patient suffers from the pre-specified condition, and is no longer competent. A valid and applicable AD has legal status, and family members cannot override it. If there is doubt about the validity or applicability of an AD, the healthcare team should continue to provide all clinically indicated emergency LSTs, while waiting for clarification. Such treatments may be withdrawn after the validity and applicability of the AD becomes clear.
Making AD via advance care planning
The approach to the making of an AD varies among different countries. Currently in HA, ADs are usually made by patients with advanced irreversible illnesses via advance care planning (ACP). ACP is often defined as a process of communication among patients, their health care providers, their families, and important others regarding the kind of care that will be considered appropriate when the patient cannot make decisions.5 Some places adopt a broader definition and include discussions with family members of incompetent or minor patients within the scope of ACP. 6,7
In September 2015, HA updated her Guidelines on LST in the Terminally Ill, and added a new section on ACP. This section was further developed into an independent set of guidelines on ACP in 2019.8 The updated Guidelines recommend that the ACP process may be initiated in any of the following situations: following the diagnosis of a life-limiting condition with a rapid downhill course, early cognitive decline in dementia, significant disease progression, discontinuation of disease-targeted treatments, transition to palliative care, recovery from an acute severe episode of a chronic disease, following multiple hospital admissions, or when the patient becomes institutionalized. However, the approach must be individualized, and it is important to assess whether the patient is ready for such a discussion before embarking on it. The discussion should be made sensitively with good communication skills. A rigid, routinized or checklist approach is not recommended. The scope of the discussion may include anticipated progression and prognosis of the illness, treatment options available and the benefits and risks, the patient's preferences and values regarding medical and personal care, and views and concerns of family members. Outcomes of ACP may include decisions on preferences for future medical or personal care, making an AD, and assigning a family member for future consultation when the patient becomes incapacitated.
Respecting an AD in an emergency situation
Before deciding to respect an AD, a doctor has to judge whether the AD is valid and applicable. This is not easy in an emergency situation, especially if there is an out-of-hospital cardiac arrest, which requires an immediate decision. To overcome this difficulty, many states in the USA developed the "Physician Orders for LST" (POLST) system.9 In the UK, guidelines and procedures have been developed to enable compliance to a Do-Not-Attempt Cardiopulmonary Resuscitation (DNACPR) form by other health care providers, including ambulance staff.10 In Hong Kong, the HA DNACPR form for non-hospitalized patients promulgated in 2014 is along this direction.11 Unfortunately, the approach is not yet accepted by the ambulance crew, because of the concern over the "duty to resuscitate" in the Fire Services Ordinance.
Legislation for AD
While the HA guidelines may facilitate the use of ADs and ACP in the Hospital Authority, there have been questions raised by professionals and members of the public regarding ADs and ACP. One of the concerns is the lack of legislation on ADs in Hong Kong. Although the Law Reform Commission report of 2006 expressed that, under the common law framework, a valid and applicable AD refusing medical treatment must be respected, there could be grey areas. Under Section 59ZF of the Hong Kong Mental Health Ordinance Cap 136, a doctor may provide life-sustaining treatments to an incompetent patient without consent if this is in the best interests of the patient. The relationship with an advance refusal of treatment is not mentioned in the legislation. Some may argue that, based on the patient's best interests, a doctor can override his/her AD. Although, in the great majority of cases, the patient's advance refusal and the patient's best interests are in line, it will be useful to have legislation to clarify the relationship between this section of the Ordinance and an AD, to avoid controversies in difficult cases.
Healthy members of the public making an AD
The approach towards promotion of ADs among healthy members of the public differs among different countries, ranging from wide promotion in the USA,12 to a more judicious approach in the UK. Some consider that there could be problems in indiscriminate signing of ADs among healthy members of the public. There is not much controversy in making an advance directive for the condition of permanent severe neurological injury. Such injury may result from unexpected catastrophic events, for example massive stroke or trauma. Because the poor quality of life of permanent severe neurological injury per se is the same regardless of the underlying cause of the condition, the decision is more straightforward. However, an advance decision regarding future terminal illness can be problematic in several ways.13 Firstly, to properly cover a range of possible scenarios that can lead to a terminal illness in the future, the information needed may be overwhelming and distressing. 14 Secondly, the quality of life of different illnesses in the terminal phase can be quite different, and it may not be appropriate to make a broad brush decision without knowing what will be faced. Thirdly, a healthy person's perception of hypothetical illness states may be worse than the perception of a chronically ill patient,15,16 and the acceptability of treatments resulting in certain diminished states of health may increase with time.17 This implies that a person's preference for treatment may change when the person becomes ill.
Actually, when a serious illness is diagnosed, most patients still have the capacity to make appropriate decisions. It may be more useful for healthy members of the public to prepare themselves and their families for contemporaneous decisions that arise during future illness, rather than make premature advance decisions about LSTs.18,19 To get better prepared for such decisions, it is important for healthy members of the public to learn more about the dying process, and to understand the meaning of LSTs and ADs. While they may not necessarily sign an AD before the onset of a serious illness, elderly members of the public should be encouraged to discuss with their family about preparation for death, and to express personal values and preferences about end of life care. This requires concerted efforts in public education by healthcare providers, social agencies and the Government of Hong Kong. If an elderly but relatively healthy member of the public prefers to sign an AD, the AD can be limited to the goals of care in the event of permanent severe neurological injury. When the person develops a serious illness, the AD can then be extended to other relevant scenarios.
What should be done to reduce difficulties in end-of-life decisions in Hong Kong?
While the Hospital Authority should continue to promote ADs in patients with advanced incurable illnesses as part of ACP, more work needs to be done in other aspects. There should be more education among healthcare professionals about ACP/ADs to improve their knowledge and communication skills required to handle such issues. For the general public, more death education should be promoted, so that people can have appropriate knowledge and emotional preparedness to face their own illnesses, as well as illnesses of family members and friends that may be expected or unexpected.
To improve the quality of dying, we should look beyond ACP/ADs. The overall medical care and social support for end-of-life patients should be improved, without which there could be difficulties to achieve some of the expressed preferences and wishes of the patient, e.g. good symptom control, preferred place of death etc. The improvement should not be limited to specialist palliative care, but should also include all services that have a role in looking after dying patients. To make this happen, there is a need for a government policy on end-of-life care, revising/enacting relevant legislations as necessary.
After all, death is the common destiny of all human beings. It will be good if we can have some say about how to travel through this last journey of our life peacefully, and leave a fond memory among those we treasure in our lives.
- HA guidelines on life-sustaining treatment in the terminally ill 2015. Hong Kong: Hospital Authority; 2015.
- Substitute decision-making and advance directives in relation to medical treatment. Hong Kong: The Law Reform Commission of Hong Kong; 2006. 161.
- Introduction of the concept of advance directives in Hong Kong consultation paper. Hong Kong: Food and Health Bureau; 2009.
- Guidance for HA clinicians on advance directives in adults. Hong Kong: Hospital Authority; 2010/2014/2016.
- Teno JM, Nelson HL, Lynn J. Advance care planning: priorities for ethical and empirical research. Hastings Cent Rep 1994;24:S32-S36.
A national framework for advance care directives. Australia: Australian Health Ministers' Advisory Council; 2011. 10.
- Tsai E. Advance care planning for paediatric patients. Paediatr Child Health. 2008;13:791-796.
- HA Guidelines on advance care planning. Hong Kong: Hospital Authority; 2019.
Physician orders for life-sustaining treatment paradigm. USA: National POLST Paradigm. http://www.polst.org/.Accessed April 16, 2018.
- Decisions relating to cardiopulmonary resuscitation. London: British Medical Association, Resuscitation Council (UK) and Royal College of Nursing; 2014.
- HA guidelines on do-not-attempt cardiopulmonary resuscitation. Hong Kong: Hospital Authority; 2014/2016
- Kass-Bartelmes BL, Hughes R, Rutherford MK. Advance care planning: preferences for care at end of life. Rockville, MD: Agency for Healthcare Research and Quality; 2003. 3.
- Tse CY. Reflections on the development of advance directives in Hong Kong. Asian Bioethics Review 2016;8:211-223.
- Randall F, Downie RS. End of life choices: consensus and controversy. Oxford: Oxford University Press; 2010.
- Kass-Bartelmes BL, Hughes R, Rutherford MK. Advance care planning: preferences for care at end of life. Rockville, MD: Agency for Healthcare Research and Quality; 2003. 6.
- Patrick DL, Pearlman RA, Starks HE, Cain KC, Cole WG, Uhlmann RF. Validation of preferences for life-sustaining treatment: implications for advance care planning. Ann Intern Med 1997;127:509-517.
- Fried TR, Byers AL, Gallo WT, et al. Prospective study of health status preferences and changes in preferences over time in older adults. Arch Intern Med. 2006;166:890-895.
- Perkins HS. Controlling death: the false promise of advance directives. Ann Intern Med 2007;147:51-57.
- Sudore RL, Fried TR. Redefining the 'planning' in advance care planning: preparing for end-of-life decision making. Ann Intern Med 2010;153(4):256-261.