12.2.1 Adult Voluntary Guardianship: Chinese Version of Power of Attorney

The enforcement of China’s Civil Code which adopted provisions on adult guardianship law began on 1 January 2021. The code is not entirely new, however, as it was initially introduced in 2017 by another piece of legislation, the General Provisions of Civil Law,Footnote ⁶ as part of a project preparing for the final Civil Code.

Adult guardianship authorises a third party (i.e. the guardian) to make legally binding decisions on behalf of another person under their guardianship. The legitimacy of adult guardianship and other forms of substitute decision-making arrangements have been the subject of considerable debates and controversies since the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)Footnote ⁷ and the first General Comment No.1 on article 12 – Equal recognition before the law.Footnote ⁸ China has been a State Party to the UNCRPD since 2008, and the reform of the law regarding adult guardianship is arguably a step towards maximising the autonomy of persons with disabilities, who are often made subjects of adult guardianship.Footnote ⁹ Although the chapter focuses on the current applicable law, it acknowledges the visible gap between domestic law and the relevant requirements made by the UNCRPD.

Before embarking on a closer examination of the adult voluntary guardianship system, it should be noted that the role played by guardians on behalf of those they are responsible for goes beyond mere decision-making. Guardianship in the Chinese context includes the extension of a combination of both rights (or powers) over the person under guardianship, in addition to having a duty of care to ensure the protection of personal rights, property rights and other rightful interests of the person.Footnote ¹⁰ In practice, guardians also have a duty of responsibility for many aspects of the life of the person under guardianship, such as caring for the person on a daily basis. A guardian may also be liable for the actions of the person under guardianship, for instance, if the person under guardianship causes injury to a third party or their property, and the guardian is deemed not to have fulfilled their oversight duty.Footnote ¹¹

In such a context where guardians have a significant responsibility and power over the life of the person under guardianship, the Civil Code allows the person under guardianship to be involved in the process of choosing the individual who will be appointed as guardian, while the person retains the mental capacity to make rational decisions.Footnote ¹² Before moving to the specific arrangements of voluntary guardianship, it is equally important to briefly examine the provisions on mental capacity and adult guardianship in general.

The Civil Code adopts the term of “capacity for performing civil juristic acts” that is based on the assessment of whether an adult can “comprehend his own conduct”.Footnote ¹³ For adults who are considered as going to lose or having already lost full or partial capacity for performing civil juristic acts, guardians could be appointed in three major methods. The first one is appointing guardians by a legal order of close relatives,Footnote ¹⁴ where the spouse of the person is the most prioritised candidate of guardian, followed by one’s parents and adult children; if all the candidates are inapplicable or unable to take the responsibility, other close relatives or other willing and approved individuals or organisations would also become eligible.Footnote ¹⁵ Guardians may also be appointed by agreement among eligible candidates of guardianship,Footnote ¹⁶ and by voluntary or prearranged guardianship.Footnote ¹⁷ In circumstances where conflict arises over the choice of guardian, the law states that the local village, neighbourhood committee or local government’s civil affairs department should intervene, or the issue be resolved in a court of law.Footnote ¹⁸ As a last resort, in instances where there are no eligible family or others who can take on the responsibility, the local village or neighbourhood committee or local government’s civil affairs department would take on the responsibility of guardianship.Footnote ¹⁹ Since guardianship in the Chinese context consists of both decision-making rights as agent and a duty of care, the legal order prescribed in article 28 of the Civil Code serves the purpose of ensuring that the person believed to be in need of such will ultimately be assigned a guardian.

Given that the state does not generally provide guardians with sufficient financial remuneration or other resources to enable them to carry out their guardianship responsibilities efficiently and effectively, to be appointed as a guardian requires a significant psychological and financial commitment.

Voluntary guardianship, or prearranged guardianship, since guardianship can hardly be genuinely voluntary, was introduced in 2017 by the General Provisions of Civil Law, and it reflected the principle of maximum respect for the autonomy and wills of persons under guardianship.Footnote ²⁰ An official English translation of article 32 of the Civil Code reads:

The provision suggests that the appointed guardian will serve the function of a power of attorney, as happens when a competent person appoints a representative to make future healthcare decisions on their behalf, in the event they lose the capacity to do so themselves at some future time. In the context of Chinese civil law, entering a contract of healthcare services with a healthcare service provider, such as a hospital or clinic, deciding on a treatment plan, and, perhaps more controversially, signing on the informed consent documentation are often considered as the so-called civil juristic acts mentioned previously.

It is clear that voluntary guardianship and its terms and conditions must be agreed in writing,Footnote ²² but less transparent are the mechanisms to ensure its enforcement. The Civil Code does not elaborate on which aspects of decision-making capacity should be assessed and how the capacity for performing civil juristic acts should be assessed and declared. In the context of healthcare services, it seems reasonable to assume that relevant medical professionals are best suited to make such an assessment. However, the Civil Procedure Law contains a section detailing the special procedure for declaring full or partial loss of capacity, a decision which must be made by a court.Footnote ²³ A careful reading leads one to infer that this procedure applies in assessing capacity, since the Civil Code is silent on this issue. On the other hand, it has been common practice that public notarisation is sufficient to activate voluntary guardianship, in which case, the aforementioned court proceeding is bypassed or simply ignored.Footnote ²⁴ This uncertainty in activating voluntary guardianship might be a factor influencing its utilisation in practice, an issue which will be explored later in the chapter.

Once the guardianship is established, the guardian’s action must be based on the Best Interest Principle of the person under guardianship.Footnote ²⁵ The Civil Code does not elaborate on what actions the guardian is required to fulfil under the Best Interest Principle. One interpretation of this provision given by the Leadership Unit for implementing the Civil Code of the Supreme People’s Court provides an example of this principle:Footnote ²⁶ the guardian may dispose of the property of the person under guardianship only for the express purpose of defending his or her interests, an eventuality that is also provided for in the Civil Code. Interestingly, however, such an interpretation also provides that the essence of the Best Interest Principle is to fully respect the wishes of the adult under guardianship, another principle that governs the guardians’ actions.

Article 35 of the Civil Code obliges guardians to give maximum respect to the true wishes of the person, by supporting the person to undertake matters that are appropriate to their capacity, while refraining from intervention.Footnote ²⁷ The principles of “Best Interest” and “maximum respect for true wishes” have the potential to come into conflict with each other; however, the practice as reflected in judicial proceedings and published medical studies seems inadequate to form a basis on which to examine the actual tension, as will be discussed later. These principles might be admittedly more relevant to the daily decision-making for persons with intellectual disabilities or mental health problems than ADs in end-of-life care or healthcare generally. At the very least, however, the principle of maximum respect for autonomy, as well as other provisions examined previously, demonstrates a clear direction in law that the autonomy of the persons whose mental capacity might be in question should be given serious consideration and respected as far as possible.

12.2.2 Code of Ethics: Respecting for Living Wills at End-of-Life Care

The Chinese Medical Doctor Association, representing 2.3 million members, issued the CoE on 25 June 2014. The association claims that the binding force of the CoE lies between non-binding declaration and formally binding regulation,Footnote ²⁸ the exact implication of which warrants further clarification.

The CoE is comprehensive in content, consisting of 40 articles that are divided into the following sections: basic principles, doctor–patient relationship, the relationship with fellow doctors, doctor–society relationship and doctor–enterprise relationship. Patient autonomy is one of the key themes. Article 1 requires doctors to give adequate respect to their patients,Footnote ²⁹ and article 9 asks medical professionals to listen to the patients and to strive to build relationships of mutual trust.Footnote ³⁰ In doing so, doctors are required to communicate with their patients in a manner that is understandable to the patient.Footnote ³¹ An example here would be the procedure of obtaining informed consent before a surgical operation; it is expected that a special examination or treatment would not be conducted as a mere box-ticking exercise or an excuse for avoiding possible liability.Footnote ³²

It is also evident that the framework is grounded in paternalism. The CoE allows doctors to conceal information considered to be potentially harmful should it become known to the patient.Footnote ³³ Guided by arguably competing approaches, some provisions read less clear. For example, article 23 of the CoE requires doctors to respect patients’ “reasonable” requests and choices, including their right to accept or decline any medical recommendation.Footnote ³⁴ Yet there remain the problematic questions of how to assess “reasonableness” in this context as there is no standard measure, or what consequences should follow when patients decline medical recommendations, both of which requires further research.

The most relevant provision relating to ADs is article 20, the first sentence of which requires doctors to take seriously patients’ life-sustaining decisions.Footnote ³⁵ It is followed by the second sentence which states that doctors should also respect any wishes expressed by patients through living wills and substitute decision-making arrangements made while patients lost their mental capacity.Footnote ³⁶ The text is unclear on whether the endorsement of living wills is limited within the scope of maintaining or withdrawing life-sustaining arrangements. Nonetheless, even for patients whose capacity for performing civil juristic acts is in question, their doctors should facilitate their maximum participation in all aspects of medical decision-making.Footnote ³⁷ There does not appear to be any empirical research on how these articles operate in practice, or how doctors have implemented any such living wills (if at all), so it remains unclear whether article 20 has been put into practice and, if so, how this was done, the circumstances, and with what consequences.

12.2.3 Summary

The normative framework governing mental capacity and professional ethics in China represents a mixed package which endorses both paternalistic benevolence and personal autonomy. Maximum respect for autonomy and involvement in healthcare decision-making goes hand in hand with the Best Interest Principle in the Civil Code and the “reasonableness” assessment in the CoE.

That said, it is equally evident from this discussion that both the voluntary guardianship in the Civil Code and the living wills provision in the CoE offer at least a possibility that ADs could become functional in China. From a historical perspective, the current normative framework demonstrates a step towards respecting patients’ autonomy in healthcare decision-making. For all stakeholders who have concerns about ADs, they at least have something to start with, albeit there remains considerable uncertainty. On the other hand, however, the fact that adult guardianship has undergone recent reform may imply that legally binding ADs are not likely to be introduced in the foreseeable future. The adult guardianship system may reinforce the pre-existing practice and culture which prioritises substitute decision-making arrangements over giving consideration to patients’ wishes expressed through living wills. Given these possibilities, the form in which these will ultimately be adopted depends on how this will be practiced on the ground.

12.3.1 Legal Uncertainty and Practical Unnecessity

In the previous discussion of the normative framework, I briefly touched on the matter of legal uncertainty. The Civil Code does not specify who should be appointed to assess the extent of incapacitation, or the procedure for activating voluntary guardianship. Moreover, the CoE fails to clarify the determination of the concept of reasonableness in patients’ wills, or whether the respect for living wills applies only in end-of-life decisions. Even though awareness of ADs has been growing, it would be reasonable to assume these uncertainties do not encourage patients or doctors to invest their time and energy in these matters. This would be particularly the case when they are unsure of the legal or practical consequences that will follow.

Risks exist in the application of ADs in light of other relevant rules. For example, faced with a living will that outlines a refusal of life-sustaining treatment, the doctor will be placed in a dilemma: on one hand, the CoE imposes an ethical duty on the doctor to respect the living will, if they are convinced that the patient’s refusal of treatment is “reasonable” and all other conditions are met.Footnote ³⁹ On the other hand, the doctor has a legal obligation to save lives, and, moreover, the law does not appear to allow exceptions, even where living wills specify the patients’ refusal of life-saving treatment. For example, the Law on Practicing Doctors (LPD) explicitly requires doctors in China to adopt emergency treatment measures, and stipulates that doctors cannot refuse to give emergency treatment.Footnote ⁴⁰ The penalties for non-compliance range from suspension for 6–12 months, to having their medical license revoked, to facing even criminal prosecution if their (in)actions result in delays in the rescue and treatment of patients in emergency and critical condition, and serious consequences due to negligence.Footnote ⁴¹ Similar provisions are also to be found in lower-ranking regulations, such as the Administrative Regulations on Medical Institution in 1994Footnote ⁴² and The Guiding Opinions on the Establishment of an Emergency Relief System for Diseases in 2013.Footnote ⁴³

It could be argued that respecting the refusal of life-sustaining treatment through a living will does not violate these general rules. Front-line practitioners, however, appear to feel assured when they are explicitly guided by clear rules that support their legal and ethical obligations to comply with the living will.Footnote ⁴⁴

In addition to these legal uncertainties in the rules and their legal consequences, substitute decision-making by formal voluntary guardianship may be seen to be unnecessary in practice. It has been widely acknowledged that the procedural requirement established by the Civil Procedure Law for declaring the capacity for performing civil juristic acts, the precondition for validating adult guardianship in theory, is facing significant practical difficulties.Footnote ⁴⁵ More importantly, family members are granted considerable rights to information and decision-making in healthcare services.Footnote ⁴⁶ Since in most cases, it is family members who serve as the substitute decision-makers, proceedings before the court would not be regarded as necessary.Footnote ⁴⁷

12.3.2 Attitudinal and Cultural Factors

In addition to the previous analysis, there also exists a body of literature that explores attitudinal and cultural factors that drive the slow translation of ADs into practice. For example, the low awareness-rate of ADs among all stakeholders (including the persons themselves, their family members, and doctors and nurses), the tradition of avoiding discussions about death, and the parent–child relationship under Confucianism are widely believed to be the main social and cultural factors relevant to the promotion of ADs.Footnote ⁴⁸ This proposition appears to be supported by empirical studies conducted in China in recent years.

Although there are no available national studies, some medical research papers have explored stakeholders’ attitudes towards ADs with relatively small samples or at the local level. For example, a study on the acceptance of ADs consisting of 280 senior patient-participants with chronic disease living in the community suggests that educational level and attitudes to death have the most significant influence on acceptance level.Footnote ⁴⁹ Those patients with higher educational levels indicated a higher acceptance level towards ADs in their responses. Participants who indicated that they had a higher level of acceptance of death as a natural consequence of life also had a higher level of acceptance of the use of ADs (mainly being more open to the idea of and use of ADs).Footnote ⁵⁰

Another study of 249 family members of stroke patients investigated their attitudes towards setting up ADs.Footnote ⁵¹ Only 40% of participating family members agreed with the idea of setting up ADs; a quarter of participants explicitly disagreed and the remaining 35% preferred not to answer for a variety of reasons. The reasons for family members’ disapproval of ADs included the following: “the patients’ choice is not necessarily reasonable” (33.3%), “family members cannot accept that their relatives would be left to die” (25.2%), “our family cannot afford a free choice among different types of cares” (14.3%), “the medical decision should be made by me (or other family members)” (12.9%) and “family members concern that doctors would not actively rescue the patients with ADs” (13.6%). Interestingly, the study also asked whether participating family members would themselves have ADs. Of 128 family members who answered “no”, 67 respondents believed doctors and family members were capable of making wise decisions on their behalf, while 60 respondents stated that they did not have adequate information to make ADs. In addition to the low awareness, it also reflects an evident attitudinal and cultural preference that favours substitute decision-making arrangements over respect for patients’ autonomy by ADs. Such a cultural preference likely also stems from what has been described as the family-based decision-making model prevalent in Confucian Chinese societies, where the family, rather than the individual patient, is seen as the primary unit of medical decision-making.Footnote ⁵²

A study in 2020 explored attitudes of 530 healthcare professionals towards ADs.Footnote ⁵³ Its findings revealed that awareness of ADs among healthcare professionals is still low; only 44.5% of the participants knew about ADs. That study adopted a broader definition of ADs, including both types of living wills and powers-of-attorney. Of the participating professionals, 84% and 70.4% approved of living wills and powers-of-attorney respectively. Regarding living wills, the reasons for approval include respect for patients’ right to choose (98.2%), reducing unnecessary suffering (91.7%) and over-treatment (77.3%), avoiding conflict of opinions among family members in resuscitation (74.4%), reducing family members’ financial (74.4%), psychological/ethical (73.7%), and caring (72.6%) burden and improving patients’ quality of life (73%).

Similar considerations shaped reasons for approving of powers of attorney, but, interestingly, some other reasons were also mentioned, for example, “avoiding the difficulties among different choices faced by doctors” and “saving time for treatment”. Among those who disapprove of ADs (16% for living wills and 29.6% for powers of attorney), legal uncertainty represented the shared reason, 68.2% and 66.2% respectively. Regarding living wills, other major reasons for disapproval include losing opportunities for resuscitation, depriving the patient’s right to life, conflicts of opinions between patients and family members, violating professional ethics, being uncomfortable discussing the topic with patients, hindering technological progress and lack of time for doctor–patient communication. Among those who disapproved of powers of attorney, there were concerns that “the patients’ decision to refuse treatment could be changed by their agents” and “the patient might lose autonomy if the power-of-attorney is signed under pressure”. A particularly potent reason was that “family members would become the agent in decision-making automatically”, meaning powers of attorney are unnecessary.

While further empirical research is needed, particularly at the national level, existing studies provide a glimpse into the role that ADs may be able to play in China. Although resistance from family members to the idea of ADs is likely to pose a challenge to the uptake of ADs, healthcare practitioners appear surprisingly supportive of living wills in particular, which may be a positive factor in facilitating further awareness and support of ADs in China over time.

12.4.1 Promotion by Beijing Living Will Promotion Association

Beijing Living Will Promotion Association (BLWPA) was established in 2013 as a non-governmental organisation with the ultimate goal being to promote the idea of “die with dignity” and living wills.Footnote ⁵⁴ In addition to distributing information booklets and public advocacy through mass media, one of its key works is supporting more people in thinking about their end-of-life decisions and making their living wills.

BLWPA’s official website (www.lwpa.org.cn) provides a tool by which people can complete a form indicating their wills and preferences regarding their end-of-life decisions. Informed by “My Five Wishes” in the United States, BLWPA guides its users to consider their wishes for wanting (a) certain elements involved in medical treatments (such as “I do not want any treatment or examination that would increase pain even when doctors and nurses believe it to be beneficial” and “I do want to keep my body clear all the time”); (b) life-sustaining treatment (including applying Cardiopulmonary Resuscitation, feeding tube, or expensive antibiotics); (c) how other people will treat me (such as “I want to die at home if possible” and “I do not want to be disturbed by volunteers”); (d) what I want my family members and friends to know (such as “I want my family to know I love them” and “I do not want any memorial service”); and (e) who will help me (appointing a substitute decision-maker to ensure these wishes would be respected as much as possible). Users need to register with BLWPA’s website to access the form, which requires that the contact information of relevant family members or friends be provided. The default setting is that the wills are activated only when two medical professionals believe the person concerned has become incompetent. BLWPA also recommends its users to notarise their wills, the purpose of which is most likely to enhance the wills’ legal status, so that doctors are more likely to follow the directives set out within the wills. That said, BLWPA acknowledges that the wills are not legally binding, as China has not enacted any law that clarifies the doctors’ roles and responsibilities in acceding to the directions stipulated within the wills.

It remains unknown how many people have used BLWPA’s service. However, arguably due to BLWPA’s advocacy, directly or indirectly, the Chinese Government initiated a pilot project on palliative care in 76 cities or districts nationwide in 2019.Footnote ⁵⁵ Legal recognition of living wills is not mentioned in the policy document of the pilot project. Nonetheless, the development of such services would be expected to have an impact on the social attitudes towards end-of-life care and surrounding legal arrangements.

12.4.2 Active Use of Voluntary Guardianship by the LGBT Community in China

The process of civil law reform in China has provoked deep concerns from among interest groups and stakeholders, among these groups being China’s lesbian, gay, bisexual, and transgender (LGBT) community. In the final text of the Civil Code, neither same-sex marriage nor civil partnership is legalised. Thus, there exists the need for other legal tools or formal arrangements that would help to ensure a legal bond between homosexual couples in China. Voluntary guardianship, therefore, has become a heated topic within the community and has raised some scholarly concerns.Footnote ⁵⁶

Yanhui Peng, a community leader from the group LGBT Rights Advocacy China, shared in an online panel in 2020 that they are exploring whether voluntary guardianship could be helpful in gaining control in a variety of issues faced by the LGBT community in China. By setting up voluntary guardianship, community members seek to make their partners legitimate agents or decision-makers on medical treatment, living arrangements as they become older, property and litigation.Footnote ⁵⁷

Facing the legal uncertainty discussed here, Peng also recommends notarising the voluntary guardianship documents. To promote voluntary guardianship among the community members and to advocate for equal rights of the LGBT community, LGBT Rights Advocacy China actively works with notary agencies in different areas. Through their active engagement, Nanjing Public Notary Office has publicly promoted their services in setting up voluntary guardianships for medical decision-making to the LBGT community in their social media accounts.Footnote ⁵⁸

How these voluntary guardianship arrangements function in practice, especially in the healthcare setting, requires further observation. The efforts from the community, nevertheless, are creating or expanding the possibility that the normative framework of ADs could be activated, thereby changing social attitudes and awareness of ADs.

13.6.1 Family-Centred Decision-Making

In Japan, family-centred decision-making is prioritised because people remain influenced by the family-centric beliefs inspired by Confucianism.Footnote ⁴⁴ In a study examining the facilitators of and barriers to the completion of ADs from the patient perspective, the participants regarded such completion as a parental responsibility owed to children.Footnote ⁴⁵ Amongst the views they expressed were that written ADs allow for a death without any futile life-prolongation and free their children from a caregiving burden should they become disabled. These views motivated the participants to complete ADs. However, some participants expressed negative views concerning how ADs function in actual decision-making. They were aware of the decision-making norm in Japanese society whereby family consensus typically overrides patient autonomy. The study’s authors suggested that the participants understood family-centredness to constitute values shared across the generations, as they themselves had fulfilled the responsibilities expected by their families throughout their lives.

Similarly, Nakazawa et al. found that, in addition to concerns over uncertainty and propriety with respect to successful AD implementation, the involvement of cultural preferences in family-centred decision-making near the end of life also influences AD practice by physicians. Whilst the physicians in their study generally expressed positive attitudes towards ADs, their practices with respect to ADs, for example, recommending that patients complete ADs, did not reflect those attitudes.Footnote ⁴⁶

13.6.2 Character Traits

According to some studies,Footnote ⁴⁷ there are several character traits in Japanese culture that may contribute to the low AD completion rate in Japan. First, omakase (when someone asks family members, close friends or medical doctors to take responsibility, it is called omakaseFootnote ⁴⁸) is commonly seen in elderly Japanese patients. These patients feel unburdened by not having to make difficult decisions for themselves even when they are capable of making their own decisions.Footnote ⁴⁹ This omakase character trait is based on the Japanese psychological factor of amae. Amae in medical practice is manifested in the attitude of patients who do not wish to make any decisions regarding their course of treatment, but instead have someone else decide what is best for them. Patients can thus both avoid making a difficult decision and taking responsibility for it. If patients ask someone else to decide what is best for them, they can live as usual without thinking about their death, and hence they also do not need to think about an AD. In this sense, omakase is a likely cultural factor contributing to the low AD completion rate in Japan.

Second, the “reticence” of many elderly Japanese people, which causes them to hide their real thoughts, may also affect the end-of-life decision-making process. This character trait often interacts with the importance of the family in Japanese culture, as discussed previously. Reticence is often observed in people who, for example, want to avoid overburdening their family members, be it financially, physically or emotionally.Footnote ⁵⁰ In addition, Japanese people tend to consider it important to have good family relationships at the end of life.Footnote ⁵¹ For example, even if elderly patients would prefer to die at home, they often hide their true wishes and agree to a hospital stay recommended by family members or medical providers because they do not want to be a burden or disrupt family harmony. Patients with this character trait are hesitant to write ADs, as the presence of an AD can constrain family decision-making and impose a burden.

13.6.3 Pursuit of a Good Death

The pursuit of a good death is also an important goal in Japanese culture. Interestingly, this goal has both a positive and negative effect on the making and implementation of ADs. On the one hand, Tsuda et al. found that participants regarded ADs primarily as a means to pursue their ideal death. On the other, the “Good Death Study” targeting Japanese people found one of the most common answers to the question “If you were dying, what would be the most desirable or good thing for you to do?” was “not being aware of death”.Footnote ⁵² As a result, ADs and ACP are considered “bad luck”, and many people avoid writing ADs or talking about the end of life.Footnote ⁵³

15.2.1 Governance Structure

Healthcare was a federal matter in the 1973 constitution, but the 18th constitutional amendment in 2011 transferred healthcare to provincial health departments.Footnote ⁵ Accordingly, the four provinces of Balochistan, Punjab, Sindh and Khyber Pakhtunkhwa assumed legislative and executive responsibility for healthcare in their provinces.Footnote ⁶ The federally administered territory of Islamabad was left to the federal mechanism even though the federal Ministry of Health (MoH) was dissolved.Footnote ⁷ After dissolution of the federal MoH, its remaining functions were dispersed across several other federal institutions, including the Planning Commission, Federal Bureau of Statistics and newly established Inter-Provincial Ministry.Footnote ⁸ This decentralisation of the healthcare system created a plethora of issues, including national coordination of global health commitments, drugs licensing and the regulation of medical and nursing professionals.Footnote ⁹ To mitigate the challenges being faced at the federal level, the Ministry of National Health Services Regulation and Coordination (MoNHSRC) was created in 2012.Footnote ¹⁰ However, the MoNHSRC has struggled to establish legitimacy, as its creation has been contested by both provincial governments and the other federal entities to which its functions were originally assigned.Footnote ¹¹ Further, not having a federal MoH means that there is no federal health minister. Pakistan is likely one of the few countries in the world to lack a permanent health minister at the federal level.Footnote ¹² The devolution of healthcare to the provincial level has created a vacuum, as the lack of a federal health minister has resulted in the absence of coordination and advocacy on health-related issues in the federal cabinet or two upper houses: the National Assembly and Senate. The absence of a federal minister for health has created unsurmountable challenges for the healthcare system. Even though legislative and executive authority now lies with the provinces, the lack of a central authority leaves a significant gap in the development of overarching policy norms, provision of health information and management of interprovincial regulation and coordination, which are roles ascribed to the federal government.Footnote ¹³

15.2.2 Healthcare Structure

In addition to governance issues, Pakistan has a convoluted healthcare system. The system is multi-tiered and multifaceted, comprising a large network of government health facilities, private individual practitioners, philanthropic organisations and private medical entities.Footnote ¹⁴

Public sector healthcare service delivery is organised into three tiers: Basic Health Units and Rural Health Centres form the core of primary healthcare, whereas Tehsil Headquarters and District Headquarters are the spine of the secondary care structure.Footnote ¹⁵ Both primary and secondary healthcare are supported by tertiary care from teaching hospitals.Footnote ¹⁶ Although public sector hospitals are the lifeline of the underprivileged and provide critical and tertiary care, a large percentage of the population, approximately 78.08 per cent, depend on private healthcare facilities.Footnote ¹⁷ Healthcare delivery in the public sector, although free, is not the preferred choice of most, as it is basic and of mediocre quality.Footnote ¹⁸

Private sector healthcare facilities are generally favoured over those in the public sector owing to the latter’s poor performance.Footnote ¹⁹ Private facilities also offer a swifter service,Footnote ²⁰ although the service provided can be placed on a continuum ranging from extremely low to very high quality.Footnote ²¹ Private healthcare fees are unregulated and depend on the physician, infrastructure and quality of care.Footnote ²² A number of private philanthropic organisations also offer reasonable quality treatment to the underprivileged segment of society.Footnote ²³

15.2.3 Laws and Legislation

In light of the aforementioned issues with governance and the unsatisfactory healthcare system, it is perhaps unsurprising that there are currently no laws in Pakistan that deal with ADs.Footnote ²⁴ The concept of respecting patient autonomy in a healthcare setting, however, can be seen in two pieces of legislation: the Mental Health Ordinance 2001 and the Transplantation of Human Organs and Tissues Act 2010. Both are noteworthy because they espouse to a certain extent the concept of individual autonomy in the healthcare context. They are briefly described here to provide a sense of what that concept means in Pakistan.

Mental Health Ordinance 2001 – Prior to our discussion of this legislation, it should be noted that the Mental Health Ordinance 2001 is in fact a lapsed ordinance. Ordinances do not become valid laws in Pakistan if they fail to pass Parliament; they remain presidential orders and lapse after three months if left idle.Footnote ²⁵ This was the case for the Mental Health Ordinance 2001, although, unlike in other jurisdictions where lapsed ordinances hold no value in the legal landscape, in Pakistan ordinances form a crucial part of the law, so much so that they carry the same weight as any Act passed by Parliament.Footnote ²⁶ Accordingly, the Mental Health Ordinance 2001 can still be said to be of influence.

The purported purpose of the ordinance was to consolidate the laws pertaining to the care and treatment of mentally disordered persons and to make better provisions for their care and treatment and the management of their property and affairs and matters connected therewith or incidental thereto.Footnote ²⁷ Although the Mental Health Ordinance 2001 was a step towards giving individuals autonomy by affording mentally disordered persons the right to make decisions about their care, specifically the course of their treatment, the mental health legislative framework remains fragmented and ineffective.Footnote ²⁸ The ordinance assumes that such persons have the capacity to comprehend their diagnosis and prognosis.Footnote ²⁹ It also fails to define capacity or specify how it should be measured, leaving it open to debate and discretion,Footnote ³⁰ which may in turn raise concerns in relation to mentally disordered persons’ right to access healthcare. Nevertheless, the granting of the right to make their own decisions about healthcare constitutes an important step towards recognising the value of individual autonomy in the context of medical treatment decisions.

The Transplantation of Human Organs and Tissues Act 2010 – This Act is a major milestone for two reasons: firstly, it is a step towards recognising individual autonomy, and, secondly, it goes against long-standing Islamic ideology. The Act facilitates individual autonomy by granting the right to donate one’s organs after death.Footnote ³¹ Whilst this legal regulation is not directly relevant to ADs, as the decision takes effect only after a person dies, the Transplantation of Human Organs and Tissues Act 2010 affords individuals the autonomy to decide what is to happen to their body after death. Most people in Pakistan believe that performing any kind of medical procedure on a dead body constitutes mutilation of the body.Footnote ³² Some Muslim sects even discourage the performance of an autopsy or post-mortem, as the removal of organs is believed to be unIslamic.Footnote ³³ This legislation thus demonstrates the significance of respecting individual autonomy in relation to one’s body even when doing so may conflict with established religious principles.

Thus, although AD legislation does not yet exist in Pakistan, respect for individual autonomy, upon which the concept of ADs is typically predicated, is gaining recognition. This suggests that despite the factors discussed in this chapter that may make AD implementation difficult, there may well be room for the development of ADs in Pakistan. Having considered the laws and healthcare structures in place in Pakistan, we now turn to its religious, socioeconomic, cultural and medical contexts.

15.3.1 Influence of Religion on Legislation

The Islamic Republic of Pakistan is a majority Muslim state that is guided by Islamic laws. In the Constitution of Pakistan 1973, Part IX: Islamic Provisions, Article 227 states that

According to this provision, all laws enacted, or legislation promulgated, have to be in accordance with Islamic teachings. Although there are many sects in Islam, and each sect interprets the religion according to its own understanding, there is consistency of interpretation amongst most Islamic jurists in the belief that life is sacred. As interpreted by some and believed by many, refusing invasive treatment is tantamount to hastening death, which is contradictory to the teaching of the Quran.Footnote ³⁵ Saving lives is a duty, and taking lives unjustifiable.Footnote ³⁶ In addition, clerics, who exert a strong influence on society, believe that the withholding or withdrawal of treatment is contrary to religious ideology. In fact, according to the Council of Islamic Ideology in Pakistan, “life is sacrosanct and one should do everything possible to save it”.Footnote ³⁷ This directive to sustain life at any cost can be understood to be in direct conflict with the concept of ADs, as ADs give individuals the right to refuse life-sustaining treatment. There are, however, interpretations consistent with the concept that do not run contrary to the sanctity of life. For example, some believe that life is given and taken by God and that the provision or withdrawal of treatment cannot prolong life or hasten death because the time of death is preordained; hence, death will occur irrespective of the treatment choice.Footnote ³⁸ The religion may thus allow a person to make decisions on their course of treatment based on personal choice.Footnote ³⁹ Given these differences in interpretation, families often rely on the advice of religious scholars before making decisions about end-of-life treatments for terminally ill patients because they lack confidence in their own knowledge of what is permissible in the Quran. In hopeless situations, religious scholars may allow families and patients to take decisions regarding the course of treatment, not with the intention to hasten death but to refuse treatment that is emotionally and financially exhausting and painful, in addition to being of no benefit.

Another aspect worth exploring is the assignment of responsibility for the elderly and women in the Quran. Some Quranic injunctions place such responsibility on the male members of the family. Islam encourages a sense of obligation towards caring for elderly parents and being responsible for women while also emphasising the inherent goodness of looking after the sick. Chapter 17 of the Quran, Al-Isra’, states: “Allah has ordered you to worship none except Him, and to be good to your parents. If either or both of them attain old age with you, do not say ‘fie on you’, nor rebuke them, but speak to them with words of respect”. Chapter 4, An-Nisa, discusses the husband’s role as “protector and maintainer”. Verse 34 of An-Nisa states: “Men are the caretakers of women, as men have been provisioned by Allah over women and tasked with supporting them financially”. A hadith (saying of the Prophet Mohammed) narrated by Muslim [2699] on caring for the sick reads as follows: “The one who stays with the one who is sick, and takes care of him and looks after him has done good by serving him and caring for him, and Allah, may He be glorified and exalted”.Footnote ⁴⁰ These Quranic verses and hadith are indicative of the responsibilities of male family members.Footnote ⁴¹ Whether those responsibilities are limited to specific situations or extend to all matters is unclear.Footnote ⁴² However, prevailing religious values give male members of the family the right to make decisions on healthcare matters for the elderly (primarily parents) and women. This automatic assignment of rights suggests that ADs have little role to play, as the male members of the family are essentially substitute decision-makers in end-of-life situations.Footnote ⁴³ Hence, issues related to patient autonomy, ADs, end-of-life medical treatment and other matters have perhaps not been addressed by the legislature based on the assumption that such decisions lie with male members of the family.

This section thus demonstrates that whilst religion generally has a guiding influence on legislation in Pakistan, different interpretations of Islamic teachings result in varying attitudes towards ADs. It is perhaps for this reason that no AD legislation has thus far been discussed. Legislators may well feel that they are in no position to make decisions on such a controversial subject rooted in religious ambiguity.Footnote ⁴⁴

15.3.2 Economic, Social, Cultural and Medical Landscape

A medley of religious values, social and cultural norms, and economic stratification has resulted in a distinct economic, social, cultural and medical landscape in Pakistan. Both patriarchy and hierarchy feature heavily in Pakistani society, owing to which the family takes centre stage as opposed to the individual. The patriarchal system is supported by religious beliefs, traditions, and local social and cultural values, which in turn result in extended families that expand horizontally and vertically across generations. These beliefs and values further reinforce familial prioritisation and solidify the role of the family in undertaking decisions on terminal illness for competent and incompetent patients alike. Familial hierarchy, patriarchy and, as mentioned previously, religious teachings all select the oldest or most competent male family member as the pivotal decision-maker.Footnote ⁴⁵ As a result, all healthcare decisions, including end-of-life care and treatment, are generally made by the selected male family member, leaving little space for individual autonomy and eroding the need for ADs. This power imbalance in itself reflects inadequate representation of the interests and perspectives of female family members, who, ironically, are often the primary caregivers in such situations. The patriarchal system is likely also rooted in socioeconomics, with limited resources often dictating that the survival of the family as a whole takes precedence over individual autonomy.Footnote ⁴⁶

Furthermore, many patients themselves refuse to discuss death or terminal illness, and thus the responsibility falls on the family members who decide whether patients are to be informed of their diagnosis or prognosis.Footnote ⁴⁷ Families channel their love and compassion by hiding painful realities or cloaking diagnoses in abstraction. Medical professionals accept this state of affairs as well, respecting family decisions and refraining from revealing the diagnosis to the patient.Footnote ⁴⁸ Disease and death are viewed as happening to families rather than individuals, with the family of the individual in question playing a significant role in decision-making and responsibility.Footnote ⁴⁹ For example, children are socialised to believe that caring for parents and grandparents is their duty, with sons often expected to live with their parents and take care of them in their old age.

This emphasis on the family in end-of-life decision-making may make it difficult for individual-oriented ADs to be accepted and used, as demonstrated by a study on advance care planning conducted amongst 57 South Asian individuals (including Pakistanis), which found that many of the participants considered planning ahead to be unnecessary because of close family ties and predefined familial roles and trust in the context of medical decision-making.Footnote ⁵⁰ Most participants believed that one should focus on concrete activities, with advance care planning thought to be irrelevant, vague and unnecessarily worrying.Footnote ⁵¹

In addition to the role of the family, that of healthcare professionals is also relevant. A substantial number of people in Pakistan are uneducated and lack the ability to comprehend complex medical conditions, meaning that they depend on the advice of physicians. Physicians and nurses in Pakistan are often drawn towards taking on a decision-making role owing to a combination of factors. In line with the centrality of the family in Pakistan, healthcare providers are often symbolically “inducted” into the family in such a way that they end up directing rather than facilitating medical interventions and care.Footnote ⁵² In addition, physicians hold an esteemed position in Pakistani culture owing to their knowledge and expertise. Perhaps as a result of this status, as well as a lack of training in communication skills and ethics education, healthcare professionals assume responsibility for making decisions, often sharing limited information with family members and refraining from fully disclosing a diagnosis or prognosis to patients or doing so only in ambiguous terms, as they do not want to convey bad news to patients. Deeply entrenched in cultural values, medical professionals often ignore ethical values.Footnote ⁵³ Undoubtedly, accepting cultural norms is easier and less exhausting than critiquing them or forging an alternative involving patients’ informed consent.Footnote ⁵⁴ According to one study, nurses and physicians often adopt the role of care provider, counsellor and, most commonly, decision-maker.Footnote ⁵⁵ Most physicians view themselves as independent decision-makers, particularly with regard to patients in a critical condition, assuming that they are best equipped to understand the needs of an incapacitated patient.

Recognising this practice as unethical, several healthcare organisations across the nation have formulated and implemented do-not-resuscitate, end-of-life care and withdrawal of life support policies and practices at an institutional level.Footnote ⁵⁶ Palliative care services have been established in many of the leading tertiary care hospitals and comprehensive cancer care centres in the nation. Palliative care providers tend to have lengthy discussions with patients and their extended families to explore the goals of such care.Footnote ⁵⁷ These discussions are often transcribed and documented in the patient’s medical record. Although such records serve to facilitate patient care, they hold no validity in the courts.Footnote ⁵⁸ It is also unclear whether the goals transcribed in these informal records are met.

It can thus be seen that the economic, social, cultural and medical landscape of Pakistan erects numerous obstacles to the introduction of ADs. In addition to the role of the family in end-of-life decision-making, healthcare professionals in Pakistan have also taken on the role of decision-maker even in situations where doing so may not be ethical. We consider possible solutions to these issues in the following section. Whilst some steps are being taken to involve patients and their families in processes akin to advance care planning, their effectiveness cannot be ensured without a more formalised regime.

16.2.1 Healthcare Context: Lessons for the End of Life

Emphasis on the sanctity of life, as demonstrated by the importance the Quran places on the saving of a life, is particularly significant in the healthcare context. As with all other religions, life is sacred in Islam and Muslims are obliged to safeguard it, and the preservation of life is amongst the highest purposes of Shariʾah. Moreover, life is believed to be given and owned by Allah, and hence only He can take it. In other words, no Muslim is allowed to take his or her own life, or to help anyone else, Muslim or not, to take his or her life, although, as we shall see, there are instances in which the withdrawal or withholding of futile treatment is permitted or even required.

Illness is generally believed to be a test from Allah, a test of His servants’ patience and a means of helping them to erase some of their sins. Whilst all suffering and death is determined by the will of Allah,Footnote ⁵ however, that does not mean that suffering and death should be sought or tolerated unnecessarily, with many hadith encouraging Muslims to seek remedies for their illnesses. Examples include the following:

Scholars have proposed differing views in relation to the treatment that should be sought. For example, a very prominent scholar, Imam Ahmed ibn Taimiya (who died in ad 1328), stated that seeking treatment can itself fall anywhere on the aforementioned scale of permissibility based on the weighing of its benefits and harms, as follows:Footnote ⁶

1. 1. If the treatment is more harmful than the disease or the person believes that he will be cured by the medicine (not by the will of Allah), then it is forbidden (haram);

2. 2. If the treatment has equal value to no-treatment, then it is permissible (mubah);

3. 3. If the treatment is likely to be beneficial, then it is favoured (mustahab); and

4. 4. If the treatment is necessary to stop the harm to oneself or others, then it should be done (wajib).

Other scholars have divided the seeking of treatment into three categories: obligatory (where the disease is treatable or is a communicable disease that could be harmful to others), optional (where the treatment is experimental or the overall benefit is unclear) and abstinence (where the treatment would be futile or even harmful).Footnote ⁷ It thus appears that in situations in which a treatment could be futile or harmful, Islamic law principles would generally dictate that the individual not seek treatment, which is consistent with the withholding or withdrawal of futile or burdensome life-sustaining treatment at the end of life. This view is also in line with the concept of death in Islam. Muslims believe that death is like crossing a bridge between this temporary life (of action) and the eternal hereafter life (of judgement and rewards).Footnote ⁸ In other words, Muslim patients should not expect to be immortal or believe that they can delay death, which further supports the idea that the artificial and futile prolonging of life is not consistent with Islamic principles.

In addition to such principles and interpretations, fatwas are also a source of guidance in the healthcare context. Most of the leading fatwas related to organ donation, blood transfusion, cardiopulmonary resuscitation (CPR)Footnote ⁹ and many others were the result of doctors or patients submitting questions in pursuit of religious fatwas from the Council of Senior Scholars.Footnote ¹⁰ Arguably, this is a unique feature of the Saudi context in that clinical/medical decisions are not made solely within the confines of the doctor–patient relationship, as the scholars who are expected to rule by way of fatwas are mainly non-medical by profession. It is important to acknowledge the challenges associated with this feature of the Saudi context: because it is essential in Islamic jurisprudence for Islamic scholars to fully comprehend an issue in order to judge its suitability, they require a healthcare expert to explain the issue to them in lay terms and to answer their questions. That expert is usually a medical doctor. Whilst this is entirely understandable, the problem is that those providing the requested explanations are usually physicians, who may have their own preferences in the matter, which could result in experts advocating for what they think is right. The end result could be an indirect form of medical paternalism, aggravated by the religious cover it may have if the decision-making authority seems to have moved from a physician to a religious scholar.

The most relevant fatwa in the end-of-life context is likely the famous Fatwa No. 12086 issued on 28/3/1409 (H) (i.e. ad 1989) by the Presidency of the Administration of Islamic Research and Ifta’, Riyadh, KSA. This fatwa relates to do-not-resuscitate (DNR) orders and states that “if three knowledgeable and trustworthy physicians agreed that the patient condition is hopeless; the life-supporting machines can be withheld or withdrawn. The family members’ opinion is not included in decision-making as they are unqualified to make such decisions”.Footnote ¹¹ This fatwa is a good example of the unique role that fatawa play in the Saudi legal system: although they are not laws per se, they can be used as legal evidence in the absence of law. This is demonstrated by the fact that, despite there being no mention of DNR orders in any Saudi law, the practice of DNR in Saudi hospitals has been reported for more than 20 yearsFootnote ¹² and the only reference “legalising” this practice over the years is the aforementioned fatwa. Fortunately, there has not been a single case of the family of a patient who died while under a DNR order suing the patient’s doctor and/or the hospital at which he or she was admitted. It would be interesting to see how the Saudi courts would handle such a case and whether the fatwa alone would be sufficient to clear the doctor/hospital of liability.

16.2.2 Advance Directives

The foregoing discussion of the end-of-life care context in SA demonstrates the general permissibility of withholding or withdrawing futile or harmful life-sustaining treatment, as well as the very specific fatwa guidance in relation to DNR orders. Given that there are no laws or fatwas directly addressing the issue of ADs, however, how should we understand the permissibility of preparing and implementing ADs under Islamic law?

At least two sources of religious guidance can be drawn upon in understanding ADs under Islamic law. The first, which aids understanding of the individual’s own role in end-of-life decision-making, is a well-known hadith about the Prophet Muhammad’s illness and death:

This hadith demonstrates both a patient’s right to refuse treatment and the fact that this right cannot be overridden by the wishes of others, even his or her closest relatives. Al-Jahdali et al. further interpret the hadith as conveying three principles: (i) Muslims are permitted not to receive treatment, especially if they have an incurable disease; (ii) those taking care of patients are not permitted to force a patient to accept a certain treatment, especially when they know that the patient does not want it; and (iii) those persons will be held accountable for their actions if they do force the patient to do so,Footnote ¹⁴ or, in other words, a patient whose right has been unlawfully overridden has the right to seek retaliation for the (ab)use of his or her state of unconsciousness.

In the context of ADs, these principles can be understood as providing patients with the right to specify beforehand what they do not want to be done to them at the end of life, including choosing whether or not medication or other treatment options will be administered to them. In addition, they demonstrate that ADs should not be overridden and that those who attempt to do so can be held accountable for that attempt, even if made in good faith.

The second source of religious guidance comes from Fiqhi principles, which represent a practical framework for legal and moral decision-making through the categorisation of general rules under which there are sub-principles that are derived primarily from the text of the Quran and Sunnah.Footnote ¹⁵ Next, we discuss the five main Fiqhi principles agreed upon by most Sunni scholars, as well as some of their main sub-principles, and our interpretation of how they might be applied in the AD context.

1. I. The Principle of Intention (Qaidat Al Niyyah)

This principle states that actions are judged by (or based upon) their intentions. Any act of a human being must come from and is based on his or her will and intention. Under this principle, there is a sub-principle which states that “the means are judged as the ends”, or, in other words, the means are judged using the same criteria as those used to judge the intention. Thus, if the intention is wrong, the means will also be considered wrong. In the AD context, this sub-principle can be understood to mean that when a person writes an AD, he or she cannot request illegitimate interventions to achieve a legitimate purpose or legitimate interventions to achieve an illegitimate purpose. For example, even if further treatment would be futile, burdensome or harmful, and the patient would die from the legitimate withdrawal of life-sustaining treatment, he or she cannot in his or her AD request extensive doses of analgesics that could lead to death.

1. II. The Principle of Certainty (Qaidat Al Yaqeen)

This principle states that certainty cannot be removed by doubt; that is, what is known to be a fact cannot be overridden by what is doubtful. Under this principle, there is a sub-principle which states that what is proven by evidence is valid unless denied by contrary evidence of equal or better strength. In the AD context, this can be understood to mean that where an AD is considered to have been validly made (e.g. the patient was considered competent to make the AD at the time of its drafting) or is considered to apply (e.g. the patient has lost capacity), doctors should implement the AD unless they have contrary evidence of equal or better strength, such as strong evidence that the patient was not competent at the time he or she made the AD.

1. III. The Principle of Injury (Qaidat Al Dharar)

This principle states that harm may be neither inflicted nor reciprocated in Islam. Harm must be eliminated but not by means of another harm. Under this principle, there is a sub-principle stating that harm is to be prevented to the greatest extent possible. In the end-of-life context, where continuing treatment would be futile in terms of recovery and would be burdensome or even harmful in terms of pain and suffering, an AD can be seen as a way to prevent and limit the harm caused to the patient. That view would, of course, be based on the view that the infliction of such prolonged pain and suffering would bring greater harm than bringing about death more quickly by following a patient request in an AD to withhold or withdraw life-sustaining treatment. This is the case because another sub-principle states that an injury cannot be relieved by inflicting or causing a harm of the same degree, which suggests that any option that could inflict some kind of harm, such as the withdrawal or withholding of life-sustaining treatment that would ultimately result in death, would need to be assessed as to whether it might cause equal or greater harm to the patient than what he or she is currently suffering, as well as what the projected outcomes might be.

1. IV. Principle of Hardship (Qaidat Al Mashaqaat)

The basic principle here is that difficulty calls forth ease, and is the basis for allowing an exception to the rules where adherence to the rules would result in great hardship.Footnote ¹⁶ Whilst this principle deals primarily with what exceptions are permissible in situations of necessity, a sub-principle which states that “what is allowed for a cause (justification) goes with the cause” may be relevant in the AD context: if the AD’s validity and applicability are justified by the patient’s loss of capacity, they should become void as soon as he or she regains capacity.

1. V. The Principle of Custom or Precedent (Qaidat Al Urf)

This principle states that custom or precedent has legal force. What is considered customary is what is uniform, widespread, predominant and not rare. Customary practices are those that are acceptable to people of a sound nature and enjoy universal or general acceptance by a given country or generation. Custom in a given society can take the form of words, actions, abstinence or a mixture thereof. Under this principle, there is a sub-principle stating that only known customs, not rare ones, are recognised; in other words, transient customs are not recognised. In the wider healthcare context, this sub-principle could be understood as a form of norm-setting by clinical professionals, which in turn renders the customary practice legitimate. Thus, in so far as a practice is customary, it sets a precedent that should be followed. In the more specific AD context, it would mean that if healthcare professionals used ADs customarily, that usage would constitute a bottom-up approach to the legitimisation of the use and implementation of ADs as professionally acceptable, or even required, behaviour.

Another sub-principle states that things are defined by customs, not only by language, and that the way in which people use words can be used as evidence. In the context of ADs, this sub-principle can be understood as follows: where patients use terms in their ADs that are ambiguous or capable of being interpreted in more than one way, the most common, or public, interpretation should be used. For example, if a patient expresses a desire to have all care withdrawn in the face of a life-limiting diagnosis, it would be appropriate for the phrase “all care” to be interpreted in terms of medical treatment interventions rather than basic palliative care support that mitigates pain or suffering in the last moments of life. This is the case because despite the fact that “all care” could reasonably incorporate all healthcare interventions, laypersons would be unlikely to interpret the phrase in those terms.

With respect to the specific content of an AD under Islamic principles, Albar and Chamsi-Pasha have identified four elements that can be included: (i) a request to discontinue treatment; (ii) an instruction to switch off life-support equipment; (iii) the inclusion of organ donation; and (iv) power of attorney (wakalah).Footnote ¹⁷ In relation to the discontinuation of treatment, these authors argue that treatment can be discontinued if continuing it would not improve the patient’s condition or quality of life and the intention is not to hasten death but rather to refuse “overzealous treatment”. This argument is in line with the principles and interpretations discussed previously, which consider the withdrawal or withholding of treatment to be permissible where treatment is futile. Albar and Chamsi-Pasha also argue that palliative care aimed at maintaining personal hygiene and basic nutrition should not be discontinued, which is in line with the idea that only futile or harmful interventions can and should be stopped. Care that is beneficial, at least in terms of quality of life, should remain as a treatment or “remedy” that should be sought when ill.

The instruction to switch off life-support equipment pertains primarily to the case of brain death, for which several fatwas provide guidance,Footnote ¹⁸ and organ donation, which is beyond the scope of this chapter. In terms of power of attorney, or wakalah, Albar and Chamsi-Pasha contend that it would be prudent for Muslims to entrust someone (their wakil, or authorised representative) with the power of attorney in their living will. Should the person in question subsequently become incompetent, the wakil would be responsible for conveying the wishes stated in his or her living will. Accordingly, it can be seen that the term “power of attorney” as used here goes beyond the conventional sense of an individual being granted the power to make decisions on behalf of another, extending it to the role of the wakil as a conveyor or even interpreter of the content of an AD. It should be noted that the content of a living will should not include any clauses that contrast with or contradict the rulings of Shariʾah; as long as that is the case, there would arguably be no justification for ignoring the directive.Footnote ¹⁹ Moreover, the wakil is committed to following the instructions in an AD without any alteration or hiding.Footnote ²⁰ The wakil is considered a witness to the wishes of the person making the AD and is legally and morally bound to express and convey those wishes to others, including healthcare providers.Footnote ²¹

16.3.1 Role of the Family

Available empirical data suggest that the family plays a significant role in medical decision-making in SA. In a 2012 study on end-of-life practices in a tertiary intensive care unit in Saudi Arabia, it was found that in 88 per cent of their sample of 135 patients who had died after an end-of-life decision, the family or surrogates had been informed and were involved in these decisions.Footnote ²⁵ This finding is consistent with the description in Tayeb et al. of the distinct nature of the Saudi family and its composite interrelations and strong ties, whereby the patient and family are seen as one unit,Footnote ²⁶ as well as the view of Al-Jahdali et al. that illness is considered a “whole-family affair” in Muslim culture.Footnote ²⁷ Al-Jahdali et al. further argue that family members may even prefer that a patient not be directly informed of a life-threatening diagnosis or prognosis,Footnote ²⁸ and may demand to make end-of-life medical decisions for the patient, decisions that often involve heroic interventions that the patient may not have wanted.Footnote ²⁹

This is perhaps the reason why, despite the cultural significance of the family, studies have shown that a considerable percentage of patients prefer not to consult their family members on end-of-life decision-making. For example, in the previously described study by Baharoon et al., 25 per cent of the sample wanted to be the sole decision-maker, with 55 per cent wanting their family to participate in decision-making.Footnote ³⁰ In a 2009 study by Al-Jahdali et al. of advance care planning preferences amongst dialysis patients,Footnote ³¹ one survey question asked participants what they would wish to do if they were transferred to hospital and told by a doctor that their chances of survival were hopeless/dismal. One of the response options queried whether the participant would, in such a scenario, wish to consult their family members before making a decision, and 28 per cent of the sample stated that they would not.

Whilst it is interesting that a significant percentage of patients appear not to want to involve their families in end-of-life decision-making, the importance of the family in Muslim cultures such as that of SA and family participation in (or in some cases, takeover of) decision-making in the majority of cases may create difficulties for the use of ADs in SA, at least in a format that emphasises the role of the individual as the sole or primary decision-maker.

16.3.2 Difficulties Concerning Discussions about Death and Dying

Another relevant factor emerging from the limited empirical research available is the perception that death is not a favoured topic, with discussion of it sometimes avoided, which affects the willingness of doctors and patients to engage in advance care planning more broadly. For example, in the aforementioned study by Tayeb et al., the following was reported: “Some focus group members were concerned about our society’s tendency to consider death as taboo, something that human beings cannot interfere with. Participants informed us of cases in which healthcare providers avoided end-of-life discussions because they believed that it is beyond our control as humans”.Footnote ³²

This view aligns with the perception, mentioned by Baharoon et al., that Arab patients prefer not to discuss ADs owing to a fear of discussion of death and all news related to it,Footnote ³³ as well as with the problems of palliative care in SA discussed by Alshammaray et al., which include a general unwillingness to discuss issues of death and dying.Footnote ³⁴

There is, however, preliminary evidence from Baharoon et al. suggesting that Arab patients may be more willing to discuss end-of-life decisions, as well as ADs, than previously thought.Footnote ³⁵ Although the authors found the majority of their sample to lack knowledge and understanding of their illness and options, as discussed previously, they also found that their patients were generally willing to engage in end-of-life care planning with their doctors and to make decisions about end-of-life care.Footnote ³⁶ Despite their participants’ limited knowledge of CPR or mechanical ventilation, the majority were capable of making sensible judgements about end-of-life matters, and, when asked directly about their end-of-life preferences, 90 per cent of the sample had formulated opinions on whether resuscitative care would be desirable.Footnote ³⁷ Given the limited scope of the study, however, more research is required to substantiate the authors’ observation. Nevertheless, avoidance of discussions of death and dying may well contribute to the general lack of discussion surrounding end-of-life care and decision-making, which in turn renders the use of ADs in SA more difficult.

17.2.1 Well-regulated Jurisdictions

The well-regulated jurisdictions are those jurisdictions with a clear set of legal rules focused on, or encompassing, ADs. These jurisdictions are described as “well regulated” simply because the legal regulation of ADs in these jurisdictions is relatively formal, and not on the basis of any normative assessment of the quality of this legal regulation.

All of the jurisdictions in this category have detailed legal rules regulating ADs, but each jurisdiction faces its own problems in terms of implementing its framework. The over-specificity of Israel’s law, for example, has led to a paradoxical limiting of its application. The scope of the law in Singapore is arguably too restrictive, and replete with too many formalities, whereas Thailand’s legal framework lands on the opposite extreme. Despite South Korea’s principled attempts to endorse patient preferences, it is comparatively difficult to execute a patient’s wishes due to the need for verification of such wishes prior to implementation, and the relative ease with which they can be overridden by family. India’s framework, which is the only one in this category that takes the form of judicial guidelines, is overly complex and administratively burdensome.

Except for Taiwan and Thailand,Footnote ³ jurisdictions in this category have frameworks that are restrictively limited to patients with terminal illness and the withdrawal/withholding of futile treatment, a feature that, as will be discussed, appears to be common among the Asian jurisdictions in this book. In addition, despite the detailed frameworks in these jurisdictions, there generally appears to be a low level of awareness and take-up of ADs.

17.2.2 Semi-regulated Jurisdictions

The semi-regulated jurisdictions are jurisdictions with other forms of regulation on ADs. Iran falls between the well-regulated and semi-regulated jurisdictions given the legally binding nature of its Charter of Patient Rights and General Guideline of Professional Ethics, but was nonetheless placed in this category because these documents fall under the lowest, or tertiary, level of legal regulation in Iran. Turkey is also anomalous in that the guidance it has on ADs is significantly less than any of the other jurisdictions in this category, but it was nonetheless included due to the specific reference that the Turkish Medical Association’s Declaration on End-of-Life Decisions makes to ADs.

The jurisdictions in this category employ different approaches to the regulation of ADs, including the use of (i) professional guidelines in the Philippines, Hong Kong, Malaysia and Turkey and (ii) official regulations in Iran. Two additional points are worthy of note here. The first is that, interestingly, two of these jurisdictions, the Philippines and India, have a formal legislative framework for psychiatric ADs despite not having an equivalent framework for ADs governing treatment for physical illnesses, and end-of-life care in particular.

The second point is that, for some of these jurisdictions, in particular the Philippines and Malaysia, there is what can be called a “bottom-up” approach to regulation via guidelines issued by professional societies. In such jurisdictions, there are generally sociocultural and/or religious reasons why the state has not pushed to regulate ADs, or why AD legislation has failed to pass, but there is nonetheless taken to be a need for such regulation in practice. In the Philippines, for example, religious and sociocultural influences have resulted in failed attempts to pass AD legislation, but mounting pressure on healthcare resources, and the corresponding need for healthcare professionals to have the confidence to withdraw or withhold life-sustaining treatment in certain cases, have created a practical need for ADs – a need which has been further exacerbated by the onset of the COVID-19 pandemic. In response to this, hospitals have stepped in and drawn up their own institutional guidelines to regulate the making and implementation of ADs, in what can be considered a pragmatic and decentralised “bottom-up” regulatory strategy.

Similarly to the well-regulated jurisdictions, both awareness and utilisation of ADs appear to be low in these semi-regulated jurisdictions, where data are available. This is despite guidelines about ADs being in place. The authors often make the claim that sociocultural and religious influences have a sizeable effect on the acceptance and use of ADs, which indeed is a common feature across all jurisdictions, although there is a significant lack of empirical evidence about practice on the ground in the semi-regulated jurisdictions.

17.2.3 Non-regulated Jurisdictions

The non-regulated jurisdictions are jurisdictions with no AD-specific guidance, although broad principles generally exist within other regulatory spaces that pay regard to the importance of patient preferences at the end of life. The format and formality of such principles vary among the jurisdictions, although Japan is anomalous in the level of detailed official governmental guidance it has in the area of end-of-life decision-making.

Like the semi-regulated jurisdictions, there is a dearth of empirical evidence about the practice of ADs (if any) on the ground in these jurisdictions, and in some cases, evidence about attitudes towards ADs as well. In Pakistan and Saudi Arabia, the lack of sufficient empirical data on attitudes may have a particularly significant impact, given preliminary data suggesting that the perception that patients are unwilling to discuss death and end-of-life preferences may not in fact always be true, and that patients in these countries may be more willing to have end-of-life discussions and be informed of their prognosis and life-expectancy than previously thought. This, in turn, suggests that further research may support the goal of increased efforts in promoting end-of-life discussions with patients.

Once again, sociocultural and religious influences are similarly thought to have a significant effect on the acceptance and use of ADs in these jurisdictions, and, for some of them, this has resulted in a need for more training for healthcare professionals concerning ADs and end-of-life discussions with patients and family members. The latter observation is particularly important where there may be the aforementioned possibility of a misperception in patients’ willingness to discuss death and end-of-life decision-making.

17.3.1 Conservative Features

A clear trend across these jurisdictions is the conservative approach that has been adopted in relation to the governance and use of ADs. This approach is characterised by various overlapping features common to many jurisdictions. For example, while different forms of legal and/or professional regulation exist, the acceptability of ADs seems generally limited to patients with terminal illness, with the notable exceptions of Taiwan, Thailand and the proposed legislation for Hong Kong.Footnote ⁵ In some cases, such as Singapore, South Korea and India, this is further limited to instances of determined medical futility, which, as Chan suggests, “adds little deliberative value to the decision to withdraw life sustaining treatment”.Footnote ⁶

A conservative approach is also demonstrated by the requirements for further confirmation that exist in some of these jurisdictions prior to the implementation of the AD, and more generally, what appears to be a lack of concern for the implementation of the patient’s wishes in emergency situations. Thailand, South Korea and India, for example, all have procedures for further confirmation prior to implementation. Thailand and South Korea both require further verification of the patient’s wishes with the patient prior to implementation where the patient is conscious and retains capacity, and where the patient lacks capacity, South Korea requires the doctor to obtain the agreement of a second doctor, and the confirmation process typically involves a discussion with the family about the authenticity of the AD. In India, the procedures for confirming the AD are exceedingly lengthy and complicated, involving a Judicial Magistrate First Class (JMFC), the formation of a hospital medical board comprising multiple experts from various fields of medicine and the formation of a further medical board with the Chief District Medical Officer and other medical experts. While Malaysia does not have formal procedures in place, a similar lack of concern for emergency situations is demonstrated by the fact that the Malaysian Medical Council guidelines give physicians a wide scope of discretion to continue treating the patient in their best interests until they can obtain legal advice regarding the validity of the AD. This can be a lengthy procedure due to the lack of clarity surrounding how an AD can be demonstrated to be valid in Malaysia.

A further feature is the relative lack of duties and/or punishment imposed where there is a failure to implement an AD, in particular as compared to the presence of protections against liability where ADs are carried out.Footnote ⁷ Taiwan is the only jurisdiction with strict penalties for the violation of a patient’s AD, but only under its Hospice Palliative Care Act 2000. Under the more recent Patient Right to Autonomy Act 2019 (PRAA), there are notably no penalties for physicians, and a very wide scope to opt out of implementing ADs without a duty to refer the patient to someone else who will implement it instead.Footnote ⁸ Singapore also imposes a duty to implement an AD, but without mention of penalties if this is not complied with. India only imposes a duty on a physician to implement a psychiatric AD, with no similar duty in the case of end-of-life ADs. Not only is there no duty to implement, there are jurisdictions in which physicians are given significant discretion in deciding whether to implement at all. In Malaysia, for example, the Malaysian Medical Council guidelines only state that physicians “should” refrain from providing treatment contrary to an AD, and there is a flexibility not to comply with the AD if this decision is taken in consultation with the family. In Macao, physicians are required only to consider any patient wishes under Article 150/2 of the Criminal Code, and not necessarily to implement such wishes.

17.3.2 Lack of Awareness, Understanding and/or Utilisation

Another clear trend across the jurisdictions of this book is the general lack of awareness and understanding of ADs, even in jurisdictions where there is a clear, detailed and comprehensive legislative framework for ADs. All jurisdictions for which there were relevant empirical data indicated that there was a lack of awareness and understanding of ADs among the general public, and in several jurisdictions, such as Israel, Thailand, India, China and Turkey, there was evidence to suggest that there was an inadequate level of awareness and/or understanding of ADs among healthcare professionals as well. In some jurisdictions, there were statistics demonstrating that this had translated into low utilisation of ADs.Footnote ⁹

Two observations are worth making here. The first is that, while a lack of awareness and understanding of ADs is, in itself, a likely barrier to the use and acceptance of ADs, this may be a particular concern in jurisdictions where there are data showing that increased awareness may lead to a higher uptake of ADs. For example, there were studies from some jurisdictions in which a number of participants who did not previously know about ADs responded positively after being informed about them, and in some cases stated they would want to make one.Footnote ¹⁰ In Macao, there were data showing that the lack of information was a main reason deterring individuals from making ADs.

The second observation is that this lack of awareness and understanding is in some cases related to, or even a result of, the lack of communication about ADs by healthcare professionals to patients. In some jurisdictions like Pakistan, Saudi Arabia and Iran, this appears to be because of a more general reluctance to discuss issues of death and dying, or end-of-life decisions, with patients due to sociocultural factors or traditions in healthcare culture. In contrast, in Hong Kong the problem seems to be more of an institutional one, with a lack of effective and coordinated communication on the part of healthcare professionals regarding ADs, and in Malaysia, the professional guidance in relation to ADs is mostly reactive, without any encouraging of physicians or other healthcare professionals to initiate such discussions with their patients. The notable exception to this is the Philippines, where healthcare professionals are “instructed to carefully explain to patients how immensely useful an AD can be” as a necessary step in the delivery of healthcare.Footnote ¹¹

There is one final point to make here, connected to the point about the lack of understanding of ADs. Namely that, even at the state level, the way that AD regulation has been incorporated into existing legal and regulatory frameworks reflects that the procedural requirements to implement and enact ADs frequently do not appear to have been well thought out or understood. In jurisdictions like Singapore and Israel, there remains uncertainty about parallel regimes and how they apply.Footnote ¹² While the Philippines does not have end-of-life AD legislation, its psychiatric AD legislation has potential conflicts with existing next-of-kin laws, suggesting the practicalities of how the law is to be implemented have not been well considered. In Hong Kong, the introduction of the proposed legislation would further exacerbate the already very piecemeal approach that is employed in this area of the law.Footnote ¹³

In particular, many jurisdictions do not appear to have attended carefully to the mental capacity requirements for an AD, and how a person’s decision-making capacity is to be assessed. In some jurisdictions, there are mental capacity requirements and assessment criteria, but these are problematic. In Singapore, for example, there is inconsistency between two different legislative regimes, and therefore uncertainty regarding the mental capacity threshold to be applied in the Advance Medical Directive Act. The lack of an overarching mental capacity test in Hong Kong, together with the existence of various different tests in the common law, Mental Health Ordinance and Hospital Authority guidelines, similarly results in ambiguity as to what the test for mental capacity should be in relation to the making of ADs. In India, the court in Common Cause does not elaborate on how soundness of mind is to be assessed, even though a specific definition and assessment process exists for psychiatric ADs. Various jurisdictions, such as Malaysia, South Korea and Thailand, do not have guidance regarding how capacity in relation to ADs should be assessed. The assessment procedures in South Korea and Thailand raise particular concern. In South Korea, the lack of requirements on how capacity should be assessed has meant that it is not uncommon for this exercise to be left to nurses or even volunteers at the registering institution, who may not have any experience in this area. In Thailand, there is no requirement for the assessment of capacity at the time of making the AD at all, and physicians are only required to examine the patient at the time of receipt of the AD to see whether they were capacitous at the time the AD was made, something which is inherently difficult to do without an examination of the patient at that time.

17.3.3 Sociocultural and Religious Influences

The impact of sociocultural and religious factors on the regulation and practice of ADs is observable across all jurisdictions. The two most significant factors, the role of the family and the role of religion, permeated across some jurisdictions in complex ways, and so will be subjected to further analysis in Section 17.4.

Beyond these two factors, a cultural emphasis on deference to physicians was noted across many of the jurisdictions. For example, Tengaumnuay describes a paternalistic culture in Thailand where Thai people commonly allow physicians to make decisions for them, and are therefore less likely to make ADs. Similarly, there is a general deference to physician expertise in Malaysia, arguably also due in part to Islamic religious influence.Footnote ¹⁴ In Pakistani culture, Beg et al. describe physicians as holding an “esteemed” position. Physicians and nurses often take on a decision-making role due to various factors, including what is often a symbolic “induction” into families as directors rather than facilitators of care. There is a similarly greater role for doctors and medical paternalism in Indian culture as a result of the influence of Ayurvedic systems, although, interestingly, this has not resulted in a greater reluctance to make use of ADs. Instead, Dhru and Ghooi argue that this “preference for the role of the physician” has resulted in physicians being accorded a key role in overseeing and applying the AD regime.

17.3.4 Variations in Specificity of Regulation

In addition to the similarities observed previously, there were also important differences among the jurisdictions worthy of note. One such difference concerns the degree of specificity provided by AD regulations, where concerns were expressed regarding both over-specificity and under-specificity.

In relation to concerns about “over-specificity”, South Korea and Israel both define the terminal stage chronologically, and further make a distinction between two stages of dying. Israel distinguishes between a “dying patient” (who has no more than six months to live) and a “dying patient in the final stage” (who has no more than two weeks to live), whereas South Korea differentiates a “terminal patient” (who is expected to die within a few months) from a “dying patient” (who is going to die imminently). This distinction is important in both countries because the specific definitions shape permitted actions in different ways. In South Korea, for example, an Advance Statement for Life-sustaining Treatment (ASLST) cannot be implemented until the patient is a “dying patient”, and in Israel, while certain types of treatment can be withheld from a “dying patient”,Footnote ¹⁵ ventilator support, nourishment, palliative care and secondary/accompanying treatment can only be withdrawn or withheld from a “dying patient in the final stage”.

As the authors recognise, this level of specificity can be problematic. In the Israeli context, for example, Bentwich argues that the specificity of the timeline associated with these two stages of dying causes difficulty because of the ambiguity it paradoxically creates for physicians. This can be, for example, because prognoses often do not neatly fall into the categories of “less than six months” and “more than six months”, or because it is unclear whether an acute disease (like pneumonia) that can cause death within two weeks can be successfully treated, and therefore whether the designation of “dying patient in the final stage” is warranted.

On the opposing side of under-specificity (or over-flexibility), Ozeki-Hayashi et al. argue that the lack of a clear definition of when a patient would be considered to be in the “terminal stage” of illness in Japan’s process guidelines causes problems because it creates a reliance on the discretional judgement of the healthcare professionals assessing the patient’s condition, and because of the inconsistency in application which is likely to result. It is interesting to note that while the definition of “imminent death” in Singapore is similarly left to medical discretion,Footnote ¹⁶ there is a rigorous process of certification involving three medical practitioners, two of whom are specialists, and a separate panel of three other specialists if the initial three do not agree. While this complex process is likely to result in problems of its own,Footnote ¹⁷ it may safeguard against some of the concerns relating to inconsistency of application.

The possibility of variation in physician interpretation due to the flexibility in AD regulation is also problematised more widely. Kaur et al. argue in the Malaysian context that the wording of the Malaysian Medical Council guidance provides physicians with the flexibility to disregard explicit patient wishes. In Macao, even though there is no specific regulation on ADs, the fact that physicians are only required to take patient wishes into consideration means that physicians are given wide discretion to disregard such wishes and proceed as they see fit. In cases where life-sustaining treatment is to be rejected, Raposo and Iong hypothesise that physicians in Macao are likely to disregard such wishes due to the fear of potential litigation by family members.

17.3.5 Variations in Specificity/Complexity of Formalities

A further important but distinctive variation was observed relating to the specificity and/or complexity of the formalities placed upon the person making an AD. Here, there were jurisdictions on both ends of the spectrum of specificity and/or complexity, and the problems documented demonstrate how difficult it can be to obtain an appropriate and pragmatic balance between the two.

On one end of the spectrum, we have, for example, the jurisdictions of Singapore, India and Israel, which have very specific procedures and/or requirements in relation to making an AD, such as those relating to prescribed forms, safeguards or registration. The Singapore regime contains a number of formalities and safeguards, including a prescribed form, witnessing requirements, registration requirements, and a number of safeguards aimed at protecting the integrity and voluntariness of executing the AD. India’s judicial guidelines require an AD to be signed by two independent witnesses and to be countersigned by a JMFC, following which the JMFC must preserve the AD in both paper and digital form, send a copy to the Municipal Corporate or local village council for appointment of a custodian of the AD, inform the executor’s family of the AD, maintain a copy of the AD in their office and forward another copy of it to the relevant district court. This involvement of the JMFC renders the process particularly difficult, because, as Dhru and Ghooi argue, there are only a very small number of JMFCs in any given city, and these JMFCs will already be dealing with a significant backlog of cases. In Israel, it has been argued that the lengthy and complex prescribed form for ADs may be too difficult for laypersons to understand and use, in particular due to the inclusion of legal and medical jargon. Interestingly and also somewhat confusingly, it appears that this form also contains built-in options that allow individuals to include conditions (amounting to “unbearable suffering”) that do not comply with definitions under the law, and it is unclear what effect the specification of these conditions might have.

On the other hand, however, a regime which is flexible in terms of the formalities it requires presents difficulties of its own. A good example of this is in Thailand. Tengaumnuay claims that the regulatory procedures of this regime are so flexible that a number of specific practical problems arise, despite this approach being more supportive of patient autonomy in general terms. As there is no specific format for the AD, no requirement for medical or other witnesses and no registration system for ADs specified in the law, Tengaumnuay argues that physicians are less likely to be aware of the existence of an AD without a registry, and they are likely to be uncertain about the validity of the AD, especially whether the AD was made when the individual had capacity.

17.4.1 The Role of Religion: Sanctity of Life

The sanctity of life operates as a key principle governing jurisdictions with Christian, Jewish and Islamic influence. While in some cases, like Israel and the Philippines, this principle is given utmost importance, it does not appear to have precluded the development of ADs. In Israel, for example, ADs were formally included as part of the Dying Patient Law 2005, despite this legislation being primarily grounded in ultra-orthodox Jewish values, which include a “commitment to preserving and saving human life, regardless of the individual’s desires”.Footnote ¹⁹ The influence of such values does, however, appear to have resulted in a more restrictive scope for ADs. For example, Bentwich contends that the term “dying patient” has been defined very narrowly in the legislation, to the exclusion of patients with chronic illnesses such as dementia or amyotrophic lateral sclerosis (ALS) that do not have a clear prognosis, which appears to conform to the more orthodox view that the sanctity of life is a fundamental principle, and a key foundation of the Dying Patient Law. Similarly, Bentwich explains that the withdrawing and withholding of treatment and care is permitted in the Dying Patient Law in cases where the patients have reached the “final stage”, or where their bodies are undergoing acute systems failure, which corresponds to a Halakhic religious exception where refraining from treatments is allowed where “three or more systems in the human body have failed, and it is clear from a medical perspective that death is inevitable sooner or later”.Footnote ²⁰ Similarly, in the Philippines, de Castro et al. argue that there will likely need to be a finding of medical futility before an AD could apply.Footnote ²¹

Despite the heavy influence of the sanctity of life in these jurisdictions, however, there appears to be a tension between such overarching religious principles and the needs of practice on the ground, which has resulted, in some cases, in a bottom-up approach to ADs, as discussed earlier in this chapter. This is true of both the Philippines and, to a lesser extent, Israel. In Israel, Bentwich argues that there remains a tension between the Dying Patient Law, a law grounded in strict religious values, and the practice of the law on the ground, which is shaped extensively by medical professionals and the more secular perspectives of patients and their families. We might view this in terms of there being a recognised, pragmatic need for more “practical” solutions to work around the rigidity of the law. The 2014 case of Ploni [John Doe] v The Attorney General, where a patient with ALS requested to be disconnected from a ventilator, for example, appears to be a case where a practical “workaround” was devised by the Attorney General of Israel to try and resolve this tension.

In other jurisdictions where the sanctity of life is not necessarily of utmost importance but still a fundamental principle, such as the Islamic countries of Iran, Pakistan and Saudi Arabia, this principle (i) is subject to varying interpretations with different outcomes and (ii) is not the only major religious principle that is relevant in this area. In relation to (i), Syed et al.’s analysis demonstrates that the rule requiring the preservation of life can be interpreted using a three paradigm conception of death that views the last stage of life as part of a “dying” (al-ihtiḍār) phase, where the obligation to preserve life no longer exists because the individual “is now approaching (destined) death and therefore is not the intended subject of the obligation to preserve life”.Footnote ²² Beg et al. similarly argue in the Pakistani context that while life is considered sacred in Islam, there are interpretations of this principle that are not inconsistent with ADs, such as the idea that the time of death is determined by God and thus preordained, which means that death will occur as decided by God irrespective of the patient’s treatment decision. In relation to (ii), Syed et al. and Hussein and Adlan both describe a number of key Islamic principles in addition to the sanctity of life that are relevant in the discussion of ADs and end-of-life decision-making, such as the Rule of No Harm and the Principle of Hardship. Finally, while neither of these three countries have a clear legislative framework on ADs,Footnote ²³ it should be noted that the analyses of the relevant religious principles in these countries would suggest that if ADs were permissible, they would likely only be permitted where the treatment in question was an artificial and futile prolonging of death.

Thus, while the sanctity of life is recognisably a fundamental religious principle shared among many of these Asian jurisdictions, the principle does not appear to have a uniform effect on how ADs are regulated or implemented in these countries. It should also be noted that, in jurisdictions where religious traditions do not necessarily emphasise the need to preserve life, the influence of these traditions on ADs has also not been straightforward. On the one hand, Tengaumnuay has argued that the Buddhist contemplation and acceptance of death as part of the impermanence of life has led to the acceptance of the view in Thailand that individuals should be able to plan ahead to achieve a “good death”. On the other, Dhru and Ghooi argue that while death is seen in Indian religious tradition and philosophy as “a union with the Divine, the greater Self”,Footnote ²⁴ the desire to avoid pain and suffering is not celebrated, and the use of an AD to reject life-sustaining treatment in order to alleviate pain and suffering would thus likely not be in line with Hindu and Buddhist religious beliefs.

17.4.2 The Role of Religion: Variation in Interpretation

Beyond the principle of the sanctity of life, the authors reveal how the influence of religion on ADs more generally is not necessarily straightforward in their jurisdictions. In our view, one reason for this might lie in variations in the interpretation of relevant religious principles in the process of end-of-life decision-making itself. Bentwich demonstrates, for example, using Justice Elon’s judgment in the 1993 Yael Shefer case, that Halakhic law is capable of supporting different approaches to the withdrawal of life-sustaining treatment, and in particular the withdrawal of ventilators. Contrary to the ultra-orthodox view as represented in the Dying Patient Law, which does not permit the withdrawal of ventilators until the final stage, Justice Elon offered in that case an interpretation of Halakhic law that would support ventilator withdrawal if the patient was suffering.

Similarly, our sense is that there appears to be some room for interpretation in the application of key Islamic religious principles. As Syed et al. demonstrate by examining a number of rules that may either negate or favour the respect of an AD to limit life-sustaining treatments, such rules can often be subject to varying interpretations, and in some cases even used to support opposing contentions.Footnote ²⁵ Beg et al. argue that the study of relevant Islamic teachings has resulted in varying attitudes towards ADs amongst the interpreters of these teachings, which they hypothesise may be a reason why AD legislation has not been discussed. As they argue, “[l]egislators may well feel that they are in no position to make decisions on such a controversial subject rooted in religious ambiguity”.Footnote ²⁶

Related to the issue of interpretation is an interesting point concerning the role and significance of religious legal guidance, specifically fatwa, in Islamic countries. While the legal force of a fatwa may vary between countries,Footnote ²⁷ there is little question that fatwa are given primary importance in Islamic countries, in particular where there is no legislation on the topic. There appear to be, however, various institutional concerns with the obtaining of “reliable and accurate” fatwa on healthcare issues such as end-of-life decision-making. Syed et al. argue, for example, that the unreliability of fatwa may be due to several reasons, including the lack of stakeholder consultation or multi-disciplinary input that goes into the making of a fatwa and the fact that the derivative reasoning for medical fatwa are rarely published and therefore difficult to analyse. Hussein and Adlan raise another concern in the Saudi Arabian context, which is the fact that the Islamic scholars who issue fatwa are not generally medical professionals, and as a result, a healthcare expert will be relied upon to explain the relevant issues to them. Because this healthcare expert will usually be a physician, Hussein and Adlan argue that there is a risk that the physician may advocate for their own preferences in the matter, which may lead to an “indirect form of medical paternalism”, one with religious cover.Footnote ²⁸

Our examination of the role of the family in these jurisdictions, to which we now turn, gives rise to similar observations. It should first be noted that the literature on the role of the family in medical decision-making in Asia tends to focus on the fact that, as alluded to in the Introduction, individual autonomy is not accorded the same primacy in Asian jurisdictions,Footnote ²⁹ and that communitarian, familial models of decision-making are more common,Footnote ³⁰ which seem to be contrary to the idea of the individually based AD. The chapters in this volume, however, have demonstrated that the significance of the family, as well as its relationship with ADs, challenges this essentialist, one-dimensional picture in ways that are not often expressed. Although the role of the family is recognised as being highly influential in almost all of the chapters, the nature of, and justification for, this influence is much more nuanced and complex than is typically recognised. What we can see from the patterns of influence in these jurisdictions is that the family can play different roles in medical decision-making for different reasons, which in turn has varying effects on whether or not ADs are likely to be accepted and adopted.

17.4.3 Family-focused Decision-Making: The Authority to Decide

The most commonly described role, and the one referred to most in the literature, is a family-based model of decision-making in which the family is seen as the authority in, and unit of, decision-making. The family model of decision-making takes two main forms in this context: (i) an approach in which the patient does not possess sole decision-making authority, with the family making shared decisions with the patient as a communal unitFootnote ³¹ and (ii) decision-making directly by the family in ways that can exclude the patient entirely.Footnote ³² For example, the application of a family-based model means that, in some jurisdictions, physicians feel comfortable notifying only the family members (and not the patient) of the patient’s condition and prognosis.Footnote ³³ A more explicit example of direct family decision-making is found in Macao, where a family member, and not the patient, is responsible for signing the consent form required by the Hospice & Palliative Care Centre at the Kiang Wu hospital, which is the closest formally recognised mechanism to an AD in Macao. And, while not in relation to the making of the AD itself, Malaysian professional guidance permits a patient’s wishes to be overridden by a physician in consultation with family.

17.4.4 Family-focused Decision-Making: The Supportive Role

A very different family-focused approach to decision-making is one where family members are accorded specific supportive roles. In particular, one supportive role is where family members are relied upon to clarify the wishes and intentions of the individual in question. In the Philippines, for example, the details of a patient’s AD are verified by checking with their family members, and in South Korea, the family both assist with the verification process of an ASLST and bear witness to the patient’s preferences regarding life-sustaining treatment if no ASLST exists. In Macao, the physician has conversations with the family and takes these into account when determining whether the content of the AD reflects the patient’s current and authentic desires, and it is the family’s reaction that Raposo and Iong argue is most formative in shaping the doctor’s views on this. In Thailand, individuals can specify an individual, usually a close family member, who can clarify their intentions as laid out in the AD if there is any ambiguity or confusion. While the family plays an important role in all of these jurisdictions in assisting with the interpretation of the individual’s preferences at the end of life, the potential for abuse here must not be overlooked. Apart from the Thai context, where the individual selects their representative, there is potential, in particular where the individual does not have an amicable relationship with their family, for the individual’s wishes to be misrepresented or entirely overridden in these verification or clarificatory exercises.

17.4.5 Family-focused Decision-Making: The Carer Role

A third distinctive approach to family-focused decision-making is one in which family members adopt the role of a carer of the patient, with various implications for decision-making authority. For example, in some jurisdictions, this approach offers a justification for according an overarching decision-making responsibility to family members on the basis of a paternalistic rationale, or because doing so equates with the intrinsic expression of care within the relationship. De Castro et al. argue that, in the Philippines, it can be considered irresponsible for a family taking care of a vulnerable patient to let them make acute treatment decisions, and in jurisdictions like Pakistan and South Korea, families demonstrate their love and care by hiding the truth about poor prognoses from the patient. The family’s role as carer can also lead to a corresponding reliance on the family by the individual. In the Japanese context, for example, Ozeki-Hayashi et al. argue that the psychological factor of amae and the character trait of omakase in Japan can result in the individual preferring to leave the responsibility of making difficult decisions to their loved ones and/or physicians. Finally, related to this carer role is the importance of filial piety in jurisdictions influenced by Confucianism. This can mean that the children of the individual are less willing to initiate difficult end-of-life conversations with their parents,Footnote ³⁴ or that they feel the need to do everything to save their parents.Footnote ³⁵

17.4.6 Accommodating ADs in Family-Centric Societies: Some Potential Solutions

Given the significance of the place that the family takes with regard to ADs in these jurisdictions, how have different jurisdictions come up with solutions to accommodate the AD, in particular in light of these different roles that the family plays?

One solution that has been adopted is to incorporate family members officially into the decision-making process. This can be in terms of receipt of information,Footnote ³⁶ or in the decision-making process itself, or the wider advance care planning (ACP) process.Footnote ³⁷ A second solution gives family members an official supportive or clarificatory role. The Thai regime provides a good example of this, with the option to designate an individual, often a member of the family, to clarify any ambiguities in the AD, as mentioned previously. A third solution has been to go in the opposite direction, drafting legislation that constrains the heavy influence of the family. Article 4 of Taiwan’s PRAA, for example, specifically provides that the patient’s family are not to prevent the physician from acting on their treatment decisions, a measure which Tsai argues provides the patient with “a rights-based form of resistance against the common phenomenon of family-based decision-making in Chinese culture”.Footnote ³⁸ In Hong Kong, the government’s legislative proposal has stated explicitly that patient autonomy must prevail in case of conflict with family, and in India, a concern about potential abuse by family members has resulted in a judicial regime that relegates family to a secondary level of importance.

17.4.7 Reflecting on the Distinctive Role of Family

In light of the preceding discussion, what are the insights that can be gained in relation to the significance of the family in the AD context? Two related points can be made. First, as mentioned at the beginning of this section, the influence of the family, much like religion, is not unidimensional, and there are various ways in which the family can have a significant role to play in every aspect of the AD or its implementation. The second point is that, among these different roles, it is important to recognise an often neglected, supportive role that families play. This is in addition to, but separate from, the authoritative, decision-making role that is often taken as the norm in the literature on medical decision-making in the Asian context.

By the term “supportive role” as adopted as a family-focused approach to decision-making in this context, we envisage something much more complex than the general forms of emotional and other social and relational supports typically associated with the family in the healthcare context. Instead, this support, a kind of “support plus” as it were, is broad in scope. It might involve professionals taking steps to actively involve the family in order to bring about the best outcomes for the individual, or it could involve an individual-led approach where the person is encouraged to involve their family members in various kinds of ways. Such approaches typically involve a co-opting of family members into the decision-making process in a mediating role, as facilitators, to allow both the family and the individual to reflect on the kind of support the individual needs, and then also to identify what is best for the individual. Co-opting family members in this way takes different forms across different jurisdictions. For example, like with the Taiwanese regime, the family could be brought into the decision to make the AD as a part of the wider ACP process. As argued in the Hong Kong chapter, the AD itself might also be used as a crux upon which to engender family support for personal preferences. In this way, the making of the AD could be used to initiate family conversations about end-of-life wishes, in particular in jurisdictions where the topic of death and dying is considered difficult to broach, providing an important basis upon which meaningful and well-supported decisions about an individual’s end-of-life care can be achieved.

In this way, the construct of the “family”, as it features across these Asian jurisdictions in relation to ADs, does not need to be placed in direct contradistinction with the “individual”, as is typical in the Asian bioethics literature. The conception of the family as “support plus” renders a focus on the individual (rather than the family) as the decision-maker entirely compatible with a cultural emphasis on the family. In particular, this supportive account of the family’s role does not threaten the individual’s best interests as the goal of the decision-making process, though the identification and realisation of these interests will of course be heavily dependent on the family’s input and participation.