Medical Ethical Principles may Drive Improvement of Quality of Dying in Hong Kong

Euthanasia: Currently euthanasia has been legalized in the states of the Netherlands, Belgium, and Luxembourg under strict conditions to ensure valid consents, and the practice appears to have found acceptance in many Western European countries [3]. In Hong Kong, euthanasia has not been legalized, the conduct of which could constitute a criminal offence under Offences Against the Personal Ordinance (Cap. 212). The Medical Council of Hong Kong’s Code of Professional Conduct defines euthanasia as ‘direct intentional killing of a person as part of the medical care being offered’. It further states that euthanasia is ‘illegal and unethical’ (MCHK 2009, para 34.2).

Euthanasia may be considered an ultimate act of autonomy, with the patients choosing death over suffering from their terminal, irreversible diseases. There are safeguards to ensure that available known methods and services to minimize suffering have been exhausted, and that the decision is reviewed by more than one doctor before the administration of the lethal drug. Although there has been intense debate in recent years regarding euthanasia, particularly in Europe, the topic has seldom been raised in the public domain in Hong Kong. The only study addressing this issue was carried out over 10 years ago, where the attitudes of 618 members of the public from a general household survey and 1,197 physicians towards different types of euthanasia were surveyed. Over 60% of the public were supportive of active euthanasia, or wish to discuss this, while physicians were generally against it [4]. The general public’s support for active euthanasia may not be related to any ethical consideration of autonomy, but more guided by practical considerations, such as old age, and being a burden on families. Furthermore, more support for euthanasia was found with increasing age. A follow-up study through two focus group meetings with members of community centres for elders found that the main reason was fear of pain and suffering, fear of being a burden to the family, and the feeling of uselessness with old age [5]. These findings suggest that the support for active euthanasia was more related to cultural stereotypes in Hong Kong where being old equates with burden to family and society. Furthermore, knowledge of and provision of palliative care services were limited. The topic seldom appear in the media; yet there have been occurrences of older people suffering from debilitating chronic diseases committing suicide, as well as requests to doctors to administer an injection to end life (and suffering).

This may be a reflection of inadequate care provision, thereby raising the issue of possible inequity of healthcare resource prioritization in the context of limitation. It is notable that end of life care is ranked very low (10/12 items) in a general population survey in Hong Kong, in contrast to the United Kingdom where it was ranked second, among the same 12 items [6]. Prioritization of services in the context of resource limitation has not been acknowledged explicitly, or implicitly denied, so that these issues have not been debated either by professionals or the lay public.

Physician assisted suicide (PAS): On the other hand, there is another practice that is part of the same debate – physician-assisted suicides (PAS). It is defined as means of ending life prescribed by a doctor to the patient usually in the form of a lethal dose of drugs, to which the patient has autonomy over taking. In Hong Kong, a person who knowingly and intentionally aids another’s suicide commits a criminal offence that is punishable with imprisonment of up to 14 years. The secretary for justice must approve such prosecutions, although there is no publicly available policy guidance regarding this approval process and criteria. However, while PAS has been vigorously debated in recent years around the world, it has not been mentioned much among healthcare professionals in Hong Kong, although the media reported on PAS proposals in other countries. For example in 2014 in the UK, Lord Falconer proposed the Assisted Dying Bill, which if passed into law would allow adults who are expected to live six months or less to be provided with assistance to end their lives, when they are fully aware of all the palliative care options and make a fully informed decision in the presence of two doctors. A survey carried out in 2010 in the UK showed that 82% of people were in favour of a change in law on assisted dying [7]. The cardinal medical ethical principle underpinning the proposal is the respect for autonomy [8]. Eminent doctors argued for both sides, the debates being widely reported in medical journals. Although it was supported by the majority of peers, it fell due to lack of time before reaching the House of Commons. However the Bill will have a second reading debate in the House of Commons on 11th September 2015. The bill proposes to allow someone judged to have no more than six months to live, and has a ‘clear and settled intention’ to die, to be prescribed a lethal dose of drugs on the authority of two doctors and approval by a High Court Judge [9].

It is unclear why there is little discussion among healthcare professionals or the public about euthanasia or PAS in Hong Kong, in contrast to other countries. Possible reasons include avoidance of talking about dying, and the implied family obligation to take care of the sick or senile relatives, a feature of the Chinese culture, low level of awareness of medical ethical principles, and distorted perceptions of the curable nature of illnesses with overemphasis on technology and pharmacological solutions.

Advance directives and other legal issues: After a long gestation period, Advance Directives have been introduced (but not promoted) mainly in public hospitals. At the time of writing, there continues to be no statute or case law in Hong Kong governing the legal status Advance Directives. As the English common law is a key source of Hong Kong’s legal system, Common law has recognized that a dying adult person may refuse life-sustaining treatment and that a clear and validly made advance directive refusing such treatment to be legally binding. An Advance Directive is generally considered valid unless it can be challenged on the grounds of incapacity or undue influence. It should be noted that legislation on Advance Directives has been introduced in other countries such as the US, Canada, England, Australia, and Singapore.

In 2006, the Law Reform Commission released a report on ‘Substitute Decision-making and Advance directives in Relation to Medical Treatment’. The Commission concluded that ‘it would be premature to legislate on advance directives’ at that point in time ‘when the concept is still new to the community and is one on which most people have little knowledge’. The report recommended that the Government should work with other stakeholders such as the Medical Council and Hospital Authority to promote public awareness of advance directives, and should review the situation (of whether or not to legislate) once the community has become familiar with the concept. Subsequently the Food and Health Bureau undertook public consultation on Advance Directives in 2009/2010. Generally from the consultation, there did not appear to be a clear consensus among the respondents or public support for promoting the concept of advance directives by legislative means in Hong Kong [10].

The Hospital Authority took up Advance Directives from July 2010 onwards and issued a specific guidance on Advance Directives for its clinicians [11]. A model form was designed, based on the one developed by the Law Reform Commission, which allowed patients to choose or decline various types of life-sustaining treatment under three specific conditions: terminally ill, persistent vegetative status or a state of irreversible coma, and end-stage irreversible life-limiting conditions. The Hospital Authority has designed on form for Advance Directives, which covers the following three categories of treatment: cardiopulmonary resuscitation, artificial ventilation, artificial hydration and nutrition. The patient retains the option to change choices at a future date. The information is entered into the electronic medical record, and accessible by staff responsible for care of the patient. However the form is not legally binding, and in practice, not many patients have been asked to complete the form. There are no guidelines that require completion of this form. Many professionals, patients and carers are not aware of this form. Requests to complete this form by members of the public are met with uncertainty of what steps to take to make an advance directive, since the form requires a physician as a witness and is only available in public hospitals.

The wishes of the patient expressed in the Advance Directives may not necessarily be respected by the professionals providing care, or overridden by family members because it may be formulated without much discussion and deliberation.

In some cases certain laws and regulations may prevent wishes expressed by advance directives to be implemented. For example the ordinance governing the Fire Services Department (under which the Ambulance Command falls within) states that the duties of the Department to include assisting ‘any person who appears to need prompt or immediate medical attention by… resuscitating or sustaining his life’ (Fire Services Ordinance, Cap. 95). There is no provision in the ordinance regarding dying patients who do not wish to be resuscitated. This runs against the medical ethical principles of autonomy and futility of treatment. A similar situation applies to the Coroner’s Ordinance (CAP 504), which states that if a person residing in residential care homes for the elderly (except nursing homes) dies, the police must be notified. For these ‘reportable deaths’, the Ordinance also requires persons within a stipulated list (including medical practitioners, hospital officials and police officers), who become aware of the death to make a report of it as soon as reasonably practical. Failure to discharge this duty imposed upon him under the Ordinance renders him liable for conviction punishable by a fine and/or imprisonment for 14 days. It has been shown in a survey that up to 33% of residents expressed a wish to ‘die in place’ rather than be admitted to hospitals at the end of life [12,13]. Currently many residents living in such homes are under the care of Hospital Authority Geriatric outreach teams, who are able to provide much of the end of life care, even for those who expressed a wish to die in the care home. However, effectively the law is depriving residents of old age homes (and their relatives) of the choice in the place of dying, as well as depriving them of dignity and creating much discomfort as well as distress in their relatives during the process of dying. We suggest that an amendment of the above ordinances would enable such wishes to be respected, especially given the legally ambiguous status of Advance Directives in Hong Kong at this point in time.

Without a chance to elicit the patient’s end-of-life care wishes and realize their right to self-determination, their voices are often being ignored by the professionals providing care or family members in the medical decision-making process. US experience has showed that advance directives are only a means to document the patient’s wishes and the advance care planning process that engages individuals, their family members and health care providers in an open communication about the end-of-life care goal would be more important. To support this notion, an advance care planning programme was developed for the local socio-cultural context. The programme was entitled Let Me Talk that highlights the importance of frank communication and included components to elicit individual personal values underpinning end-of-life care wishes [14]. The programme was initially tested among old age home residents with multiple morbidity. Although they generally perceived the medical paternalistic culture, the programme significantly empowered the residents to indicate their end-of-life care wishes and the commonest preferred goal of care was comfort care. Establishment of a dedicated pathway to allow the implementation of advance care planning has been piloted and hopefully can contribute to improving the quality of the dying process. While it is possible to engage frail older people living in residential care homes to implement advance care planning [14], much education of staff working in long term care settings needs to be carried out. A recent survey showed that among the staff working in these homes, knowledge gaps exist in the areas of mortality relating to chronic diseases, pain and use of analgesics, feeding tubes, dysphagia, sputum management, and attitudes towards end of life care issues. Staff highlighted lack of knowledge in dealing with refusal to eat, management of feeding tubes, managing the dying process, advance directives and advance care planning [15].

The medical ethics of end of life care for those who have dementia have largely been neglected, since few would discuss advance directives early on in the disease. It is uncertain what role medical ethical principles play in the making of decisions regarding care for patients in the late stage of dementia. A major ethical dilemma in the care of people with dementia in Hong Kong is the widespread use of tube feeding for poor feeding and aspiration risk at the advanced stage of dementia. While it is clear that most non-demented older people do not wish to have tube feeding when they have advanced disease [12], and that tube feeding is poorly tolerated by older people with dementia, tube feeding is routinely used and enforced by physical restraints in hospitals and nursing homes in Hong Kong.

The predominant view by health professionals and the lay public in Hong Kong is that life-sustaining treatments should be standard practice, unless they are refused by the patients. As people with dementia are mentally incapable, they cannot refuse life-sustaining treatments. The beneficence and futility principles do not necessarily support the withholding or withdrawal of tube feeding in advanced dementia if one believes that preservation of life per se is of paramount importance. Consistent with this view, in a survey of primary family caregivers of older people with advanced dementia in nursing homes in Hong Kong, 45% of the respondents would still opt to have tube feeding for their loved one in the extreme hypothetical scenario of irreversible coma, even after having been told that the poor outcomes of tube feeding [16].

A counter-argument against tube feeding in advanced dementia is the lack of evidence that it prolongs life [17,18]. Careful hand feeding has been suggested to be an effective alternative [19]. But few would dismiss tube feeding as a life saving measure of the last resort even if they accept that the practice is not evidence based. Moreover, careful hand feeding is often dismissed by health professionals as impractical because of its resource implication and the risks of complaints and litigation.

The limitations of the contemporary focus on autonomy in medical ethics in the care of people with dementia have been recognized. Some have proposed to consider the personhood of people with dementia within the social context of the individuals. When one considers life sustaining interventions, beneficence should be the guiding principle, and the burden experienced by the person with dementia should be taken seriously. The negative responses to the intervention e.g. repeated attempt to withdraw nasogastric tube, should be interpreted at face value as an indication of refusal by the body of the person. Such form of “bodily autonomy” should be respected [20]. Without this alternative vision of personhood, it is not almost impossible to deliver palliative care for people with advanced dementia.

Alongside public education in palliative care in Hong Kong, there has been some shift in the public and professional opinion on the use of tube feeding in advanced dementia. But the shift has not been enough to ensure a consensus among the health professionals and the families in the great majority of cases. In reality, it only takes one person in either party to shift the decision towards tube feeding.

Therefore, it is clear that much more work needs to be done to shift the emphasis on the preservation of life to the preservation of quality of life and personhood of people with incurable diseases in Hong Kong. In addition, care professionals should be proactive in discussing end of life issues with people with early dementia or mild cognitive impairment, as advanced directive may still be feasible. This is undoubtedly a challenging exercise as people with early dementia are often in the state of denial and uncertainty. Moreover, it is uncertain if their advanced directives will be honored in the years ahead. But this kind of discussion, preferably with their family members, and probably in conjunction with advanced planning of other caring issue, may influence the attitudes of family members when end of life care decisions are called for.

Advance care planning is recommended for patients with early signs of cognitive impairments, including patients with Mild Cognitive Impairment. A recent qualitative study with 7 older people in Hong Kong that assessed older people’s readiness for advance care planning in dementia care found that the majority of them agreed with the need for advance care planning. But they also entertained some common concerns: such as the worry that no one understood their care wishes or needs, no or not enough number of health proxy and the fear of no family consensus [21].

Recently a research project promoting and evaluating advance care planning to improve end of life care in patients with advanced disease supported by the government had started, with the primary outcome of whether the patients’ end of life care preferences were known, documented and respected [22]. This is the first study to engage both patients and their family members in the advance care planning process. Patients with a wide range of diseases are included. With the experience of repeated hospitalization and increased severity in symptoms, they are generally aware that their conditions are deteriorating irreversibly and thus many of them have some forethoughts about their end-of-life care. However, rarely have they shared their thoughts with their family members. As aforementioned that end-of-life issues are deemed as complicated, the concepts of advance directives and advance care planning have not been promoted much in the society and thus nearly all participants have not heard about them. Despite this, during the study, many of them clearly indicated that they would opt for comfort care at the end of life. What they fear is the suffering induced by futile treatments, especially if they have witnessed patient being placed on these treatments in the hospital setting previously, rather than death itself as they accept it as a natural part of life. Qualitative interviews with the patients found that they value the chance to share their care wishes with their families and that brought peace in mind. Though some family members may be distressed by discussing these issues, many family members agreed that open discussion can help to prepare them for the difficult decision and they will respect the patient’s wishes.