Considerations for Introducing Legislation on Advance Decisions in Malaysia
Despite significant advances in medicine, death remains a certainty for every living human being. End-of-life care decision-making is not made easier in a multi-cultural and multi-religious society like Malaysia. As such, planning for one's death by making Advance Decisions can be immensely valuable as it can help healthcare providers in Malaysia to understand better the preferences and wishes of their patients. However, compared to other countries, there is currently no specific legislation on any form of Advance Decisions in Malaysia despite many doctors voicing a need for them. Unlike the Mental Capacity Act 2005 in the UK, the Malaysian Mental Health Act 2001 does not cover all instances of incapacity and only applies to those who suffer from a mental disorder as defined in the Act. In the absence of legislation, one could look to ethical guidelines, especially from the Malaysian Medical Council, but find that this can sometimes be problematic. It is argued that a concerted effort involving all relevant parties is required to develop a pragmatic and viable Advance Decisions frameworkl in Malaysia.
KeywordsAdvance decisions End-of-life care Medical law Malaysia
Despite significant advances in medicine, death remains a certainty for every living human being. Because the medicalisation of health has also led to the medicalisation of death, death is now deemed as a failure of modern medicine (Gawande 2014; Nuland 1995).
Already difficult in itself, end-of-life care decision-making is not made easier in a multi-cultural and multi-religious society like Malaysia. Both the healthcare provider and recipient may come from different ethnicities and religions, and adhere to different sets of values. As such, end-of-life decision-making in the Malaysian context is not “confined to clinical assessments as to what would be in the best interests of the patient from a purely medical perspective, but involve due consideration of a patient’s religious beliefs, customs and values, which ultimately have significant influence on a patient’s response to illness, suffering and dying” (Jahn Kassim and Alias 2016, p.120). As a result of this, planning for one's death by making Advance Decisions can be immensely valuable as it can help healthcare providers in Malaysia to understand better the preferences and wishes of their patients.
In order to successfully do this, two crucial steps need to be implemented. The first being that patients need to have a conversation, be it between themselves and their doctor or their family members, about their wishes, and the next equally important step is to have some form of record of these wishes. The omission of either step will result in delayed decision-making when the crucial moment arrives and possibly lead to futile treatment or other treatments that are inconsistent with the patient’s wishes being observed, at least as an interim measure (Wilmott et al. 2016).
This has led to the popular use of various forms of advanced decisions both in the oral and written forms being utilised. However, unlike countries such as the United Kingdom (UK) and Singapore that have legislations regarding advance decisions, there are, unfortunately, currently no specific legislations on any form of Advance Decisions (the term is used here to represent all the different variations of advance decisions that are identified using varying terminology) despite many doctors in Malaysia having voiced a need for it to assist them in managing their patients in a more effective manner (Jahn Kassim and Alias 2015). The current lack of legislation means that any Advance Decisions used by patients in Malaysia is technically not legally binding and in the event of a dispute, there may be a possibility that doctors may be able to overrule the decisions made previously if they are not in line with his or her practice.
Efforts to promote the introduction of such legislations require many factors to be taken into account including those from a medical, legal, ethical and cultural viewpoint in order to critically evaluate the best possible means by which they can be introduced. Due to the complexity of the issue at hand, this article will only attempt to highlight some of the issues with the current Malaysian legal perspective, contrasting this especially to the Mental Capacity Act (MCA) 2005 in the UK.
Mental Capacity Act 2005
Before focusing on the issues faced in Malaysia, we provide a brief overview of the MCA 2005 for easier comparison. The MCA 2005 is the main legislation in the UK that legitimises Advance Decisions for end-of-life care and came into force on 1 October 2007. It is to be read together with the MCA Code of Practice 2007. The Code of Practice supports the legal framework provided by the MCA and acts as guidance as to how the provisions of the latter are to be implemented. Reference must also be made to the Explanatory Notes to the MCA 2005 that are intended to assist the understanding of some provisions of the statute.
The principle of respect for autonomy applies to patients with capacity even if the decisions chosen do not coincide with the opinions of the medical team (Keown 2015). The MCA 2005 states that if the patient still has legal capacity, then it is entirely up to that individual to decide if they want their relatives and carers to be involved in determining their care and the extent to which this should be done (Wyatt 2015). It also spells out the legal framework to be followed when assessing capacity that consists of applying a two-stage test alongside a prohibition against making superficial judgments about capacity.
determining the past and present wishes and feelings of the patient,
determining the beliefs and values that would be likely to influence the patient’s decision if they had capacity and
determining any other factors that the patient would be likely to consider.
The Malaysian Context
Having achieved independence from the British in 1957, present day Malaysia comprises of 13 states and 3 federal territories in total and the entire population is estimated to be approximately 28 million (Department of Statistics (Malaysia) 2010).
Being multi-ethnic and multi-religious, Malays (67.4%) represent the largest ethnic group, followed by Chinese (24.6%), Indians (7.3%) and other ethnicities (0.7%) (Leong 2003). Islam (61.3%) is the majority religion in the country, followed by Buddhism (19.8%), Christianity (9.2%) and Hinduism (6.3%) while 3.4% of Malaysians practice other or no religions (Department of Statistics (Malaysia) 2010). While the Federal Constitution enshrines Islam as the state religion, it also guarantees the freedom of other religions. With this in mind, a unique dual justice system that comprises the civil courts and the Syariah courts exists. It is important to note that the Syariah law is only binding on Muslims and deliberates on matters regarding Islam such as its teachings on marriage, inheritance, divorce and apostasy among others (Dahlan and Faudzi 2015). The legislative power is divided between the federation and the states, while the executive power is given to the Federal Ministerial Cabinet, led by the Prime Minister.
The Medical (Amendment) Act 2012 and the Medical Regulations 2017 are the main legislations that govern medical practice in Malaysia. Additionally, the Mental Health Act (MHA) 2001 contains provisions for decision-making in instances of incapacity.
With regard to medical decision-making by a competent adult patient, the Malaysian position is similar to that of the UK, as it adopts respect for autonomy as the guiding principle. The standard is however less clear for those without the capacity to consent.
In the case of minors, parents or guardians of infants are given powers to make decisions for those under their care under Section 3 of the Guardianship of Infants Act (Malaysia) 1961 which stipulates that the guardian of an infant shall be responsible for his “support, health and education”. However, while there is no specific mention about what these constitute, Kaur (2011) suggests that these will include decisions made regarding healthcare matters, including those at the end-of-life.
On the other hand, determining who should be allowed to make healthcare decisions for mentally incapacitated adults is not as straightforward. According to Kaur (2011), the Mental Disorders Ordinance 1952 only provided for the care, reception and detention of persons of unsound mind in mental hospitals and is silent on matters relating to proxy decision-making. However, this Ordinance, with the Mental Health Ordinance (Sarawak) 1961 and the Lunatics Ordinance (Sabah) 1951 have since been repealed and replaced with the MHA 2001.
While the provision in the old Ordinance regarding the courts’ power to appoint a committee and estate of a person following a determination that such a person is mentally disordered has been retained in Section 58 of the new MHA 2001, Section 77 now provides guidance on how consent can be sought for care of patients without capacity, but these are only specific to consent for surgery, electro-convulsive therapy or clinical trials. It also mentions that consent is not required for other forms of conventional therapy.
In addition, unlike the MCA 2005, the Malaysian MHA 2001 does not cover all instances of incapacity and only applies to those who suffer from a mental disorder as defined in the Act. The provisions set forth in the MHA are “not meant to cover situations in which a person temporarily loses consciousness or where his cognitive functions are impaired due to medical conditions other than mental illness” (Jahn Kassim and Alias 2015, p.13).
The MHA is also silent on issues such as if Advance Decisions can be applied to mentally disordered patients who do not have capacity to consent or if persons authorised to consent on behalf of these mentally disordered patients are required to utilise the best interest principle. This limited guidance provides a strong reason for the introduction of legislation on Advance Decisions in Malaysia.
In the absence of specific legal provisions for Advance Decisions, it can be viewed that the legal and ethical positions on these decisions will rely on the ethical codes and that are currently available. The Code of Medical Ethics (CME) 2001 of the Malaysian Medical Association (MMA 2001) in Section 2.5 briefly alludes to the use of Advance Decisions for dying patients. It states that “one should always take into consideration any advance directives and the wishes of the family in this regard.” However, the MMA functions solely as a medical association (albeit the largest) in the country, and has no statutory powers. As such, the promulgated code of ethics would merely provide guidance for its members and would not be legally binding.
On the other hand, the Malaysian Medical Council (MMC), by virtue of the powers extended to it through the Medical (Amendment) Act 2012 and the Medical Regulations 2017 to regulate medical practice in the country, may produce guidelines that need to be adhered to by all doctors who wish to practice medicine in Malaysia. Although these guidelines do not have the full force of law, the MMC may decide not to issue or renew the Annual Practising Certificate of a Registered Medical Practitioner who refuses to abide by the guidelines it issues.
One such guideline is the MMC guideline on Consent for Treatment of Patients by Registered Medical Practitioners, with the latest version being updated in 2017. It mentions the use of ‘Advance Care Directives (ACD)’ or Living Wills in Section 18. It further divides care that is given into either emergency or non-emergency treatment and advises medical practitioners to provide treatment for the patient in accordance with their professional judgement of the patient’s best interests in the emergency setting “until legal advice can be obtained on the validity or ambit of any ACD that may have been given by the patient” (Malaysian Medical Council 2017, s.18). If doubt regarding treatment arises in a non-emergency setting, consultation with the patient’s spouse or next-of-kin should take place (ibid.).
The provisions in this guideline are however worrying on three accounts. The first has to do with the difficulty in establishing the validity of an ACD. It presumes that advanced directives exist and are made available, or attention of their existence and therefore their contents are made available to the treating doctors at the time the patient seeks treatment, including in an emergency situation. This of course does not happen in everyday practice. The second, and more worrying fact is that even if an ACD exists, it may be disregarded in both an emergency and non-emergency setting even though the guidelines do suggest that “a medical practitioner should refrain from providing treatment or performing any procedure where there is an unequivocal written directive by the patient that such treatment or procedure is not to be provided in the circumstances which now apply to the patient” (ibid., my italics). Thirdly, the provision for the ACD will only be considered if it is in the written form, and no mention is made regarding verbal requests which may be more common in the Malaysian setting.
In addition to all this, the provisions presuppose that patients present to hospitals for care. No provision is made for care in a non-hospital setting, be it in a care home or a hospice. This becomes important as the number of elderly people in the population is constantly increasing, as are the number of care homes.
Efforts to promote Malaysia as a destination for medical tourism also contribute some legal considerations. How will Advance Decisions made in other countries, both by foreign patients who come to Malaysia for treatment and by Malaysians who have been residing in places where provisions for these are in place (for example in Singapore) affect their care when they are in a Malaysian setting? Are these Advance Decisions applicable or are the patients required to make a new one in Malaysia?
It is clear that in Malaysia, where no legislation currently exists on Advance Decisions, introducing legislations on Advance Decisions is a complex task where many factors need to be evaluated before these suggestions can be implemented. We have discussed how this lack of Advance Decision legislation in Malaysia can be problematic. We have also explored the possibility of relying on ethical codes and guidelines in the absence of legislation but have found that it remains unclear how these guidelines, in the absence of any written legislation, can be effectively carried out in practice due to the paucity of clear, precise and enforceable legal standards on the matter in Malaysia (Jahn Kassim and Alias 2015).
Comprehensive enforcement of such guidelines will only be attainable when affirmed and backed by the law and will serve to regulate end-of-life decisions and provide clear guidance to doctors to ensure that their actions do not culminate in unwanted legal repercussions. Therefore, “there needs to be a concerted effort involving doctors, academicians, lawyers, religious authorities and relevant government agencies to contribute their knowledge and expertise towards the development of a pragmatic and viable advance directive model in Malaysia, as well as to educate legislators and the general public on the importance and use of advance directives so as to facilitate statutory reform.” (Jahn Kassim and Alias 2015, p. 20).
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