Part II - Semi-regulated Jurisdictions

7 The Proposed New Law on Advance Directives in Hong Kong: A Piecemeal Attempt at Codification?

Daisy Cheung & Rebecca Lee

7.1 Introduction

The population of Hong Kong is ageing rapidly. Twenty per cent of the population was aged 65 or above in 2021, a percentage that is projected to reach 34% by 2066.¹ Hong Kong also has the highest average life expectancy in the world.² The increasing number of older people, coupled with rising life expectancy and the impact of chronic illness on physical, psychological and social well-being, suggests that the demand for high-quality end-of-life palliative care services will only continue to increase.

Despite the ever-escalating demand for long-term care, end-of-life care in Hong Kong remains underdeveloped. According to the Economist Intelligence Unit’s Quality of Death Index, an instrument used to highlight advances in, the challenges of and gaps in end-of-life care policy and infrastructure in 80 countries worldwide, Hong Kong ranks relatively low at 22nd.³ A good example of the policy and infrastructure gaps in end-of-life care in Hong Kong is the poor uptake of the advance directive (AD), or a statement in which a competent person makes an advance healthcare decision that is to be implemented in the event that the person loses capacity in the future. This is despite the generally accepted view internationally, which is that the use of an AD can encourage discussions about patients’ care-related preferences and values, as well as provide clear documentation and facilitate regular review of such preferences and values.

This chapter first outlines the historical and current developments of ADs in Hong Kong. It then examines a number of legal and practical challenges in promoting the wider use of ADs in Hong Kong, including deficiencies in mental capacity law and inadequate promotion. The remainder of the chapter is divided into five parts. Section 7.2 traces the development of ADs in Hong Kong, leading up to the latest government proposal which is detailed in Section 7.3. Section 7.4 provides commentary on the legal obstacles that must be overcome for AD legislation to be successfully introduced in Hong Kong. Section 7.5 explores the local practice of ADs, as well as the sociocultural values and influences that shape this practice.

7.2 The Legal Framework: Historical Developments

Hong Kong currently lacks both a statute and local case law clarifying the legal status of ADs, although a legislative framework (discussed later in the chapter) has recently been proposed by the government. The common law principles in relation to informed consent with respect to medical treatment are generally applicable in making valid ADs to refuse life-sustaining treatment legally binding,⁴ although, given the lack of relevant case law, it is unclear how such principles will be applied in individual cases. This is not to say that efforts to specify legal rules and/or guidance for ADs have not been made over the years. What follows is an outline of AD-related discussions and policy developments in the past two decades, which can be broadly divided into three stages.

7.2.1 Stage 1, 2002–2009: HKLRC Consultation

In 2002, the Hospital Authority, a statutory body that manages all government hospitals and institutions in Hong Kong, issued the first edition of the Hospital Authority Guidelines on Life-Sustaining Treatment in the Terminally Ill. This was primarily written as an elaboration of the section on “care for the terminally ill” in the Professional Code and Conduct of the Medical Council of Hong Kong,⁵ but as part of its guidance, there was a brief discussion of ADs. In particular, it was stated that reference was to be made to the practice in the United Kingdom,⁶ as detailed in section 10 of the British Medical Association Guideline on Withholding and Withdrawing Life-prolonging Medical Treatment (1999).⁷ Apart from stating that a valid AD refusing life-sustaining treatment must be respected, section 10 provided various principles as to how validity of ADs were to be determined, as well as their legal effect.

In 2004, the Hong Kong Law Reform Commission (HKLRC) issued a public consultation paper entitled Substitute Decision-Making and Advance Directives in Relation to Medical Treatment,⁸ the results of which were published in a report in 2006.⁹ In this report, the HKLRC recommended that the government promote the concept of ADs under the existing common law framework instead of by legislation, as it was considered premature to legislate while the concept of ADs was still new to the community.¹⁰ The government was recommended to review its position and reconsider the appropriateness of legislation once the community had become more familiar with the concept.¹¹ While noting that the lack of an agreed form of AD would likely lead to difficulties and uncertainty for both patients and doctors,¹² the HKLRC rejected the option of legislating a statutory form due to the prematurity of legislation at that stage.

In response to the HKLRC’s report, the Hong Kong Food and Health Bureau (FHB) issued a consultation paper in 2009 entitled Introduction of the Concept of Advance Directives in Hong Kong,¹³ with stakeholders consulted on (i) the procedures for making, altering and revoking ADs, (ii) the content of the information package on ADs for the public, and (iii) the need to promulgate guidelines for handling ADs. The majority of views it received agreed that a non-legislative approach to AD promotion should be adopted in Hong Kong.

7.2.2 Stage 2, 2010–2019: Hospital Authority Initiatives

In 2010, the Hospital Authority issued Guidance for Hospital Authority Clinicians on Advance Directives in Adults¹⁴ for the reference of clinicians working in Hospital Authority hospitals.¹⁵ This contained a model AD form that was based on that of the HKLRC. The guidance was then updated in 2014. The changes introduced included (i) the provision of a shorter version of the AD form for terminally ill patients refusing CPR only and (ii) the extension of the scope of application of ADs such that, in addition to (a) terminally ill and (b) in a persistent vegetative state or a state of irreversible coma, a new category of ‘other end-stage irreversible life-limiting condition[s]’ was added.

In 2014, the Hospital Authority also issued Guidelines on Do-Not-Attempt Cardiopulmonary Resuscitation (DNACPR). Under these guidelines, the doctors in charge of non-hospitalised patients could sign a DNACPR form on their patients’ behalf if there was a valid and applicable AD refusing cardiopulmonary resuscitation (CPR). The doctors signing this form would certify that the AD was valid, and that the patient was already in a condition in which the AD would apply.¹⁶ This was designed to assist ‘emergency rescue personnel’ to respect the patient’s advance decision,¹⁷ but this approach was not accepted by the ambulance services in Hong Kong¹⁸ due to concern over the ‘duty to resuscitate’ in the Fire Services Ordinance (FSO). This will be discussed further later in the chapter.

7.2.3 Stage 3, 2019–Present: Reforms

In 2019, the FHB issued a public consultation paper entitled End-of-Life Care: Legislative Proposals on Advance Directives and Dying in Place¹⁹ to consult the public on several proposals, including (i) whether to codify the current common law position in respect of ADs and strengthen the safeguards attached to them and (ii) whether to remove the legislative impediments to AD implementation by emergency rescue personnel. In the consultation paper, the FHB acknowledged that the lack of AD legislation in Hong Kong had created practical difficulties in AD implementation and, in particular, posed two concerns.²⁰ First, as a result of the lack of legal guidance on ADs, healthcare professionals may be unwilling to initiate discussions with patients about ADs or implement their ADs owing to concerns that they may not have legal protection in doing so. Second, it is unclear whether an AD would supersede another statutory provision if the two were in conflict.²¹ In July 2020, the FHB released a consultation report²² mapping out the way forward. Significantly, according to the report, the government considered that it was now an appropriate time to consider AD legislation. Introducing a consistent legal framework for ADs could remove conflicts with other laws and policies and afford protection to treatment providers (including health care professionals and emergency rescue personnel) acting in good faith and with reasonable care.

7.3 The Legal Framework: Legislative Proposal

The legislative framework proposed by the government in its 2019 consultation paper is built on four fundamental principles:

1. (i) The patient’s right to self-determination must prevail in the case of conflict between the wishes of the patient and those of his family members.

2. (ii) A valid and applicable AD overrides treatment decisions based on a treatment provider’s interpretation of the patient’s best interests.

3. (iii) Individuals have primary responsibility for ensuring that the original copy of their AD is presented to treatment providers as proof of a valid AD.

4. (iv) Sufficient safeguards need to be provided to preserve lives – if any grounds for doubt about the validity or applicability of an AD, treatment providers must continue to provide clinically indicated emergency life-sustaining treatments.

The key features of the legislative proposal,²³ which for the most part track the guidance issued by the Hospital Authority, are as follows:

7.3.1 Definition and Scope

An AD must be made by a mentally competent person who is aged 18 or above.²⁴ Life-sustaining treatments (including artificial nutrition and hydration) are considered a type of medical treatment that can be withheld or withdrawn from a patient in accordance with his AD. The pre-specified conditions of an AD include (i) terminal illness; (ii) a persistent vegetative state or state of irreversible coma; and (iii) other end-stage irreversible life-limiting conditions. An AD cannot include (i) a refusal of basic and/or palliative care that is essential to keep a person comfortable, such as nursing care and pain relief; (ii) a refusal of the offer of food and drink by mouth; or (iii) anything that is against the law, such as euthanasia.

In terms of the form of the AD, the government is proposing to use a non-statutory model rather than a statutory prescribed form.²⁵ However, ADs not made in that form would still be accepted if they contained statements that are clearly written and unambiguous. A person may choose to adopt other AD forms to set out other (additional) pre-specified conditions.

An AD will take effect when the person concerned no longer has the capacity to make healthcare decisions. An AD will not be applicable (i) if the patient has the capacity to make a decision at the time the treatment concerned is proposed; (ii) if the decision to be made concerns treatments or conditions not specified in the AD; or (iii) if there are reasonable grounds for believing that the patient did not anticipate the current circumstances and, if he had, he might have made a different decision.

7.3.2 Formalities

Turning to the formalities, the government proposes mandating that the making and modification of an AD must be in writing to be legally valid, which would also serve to reduce uncertainty and potential disputes concerning validity. In contrast, no unnecessary hurdles should be imposed upon those wishing to revoke an AD, and so it is proposed that both verbal and written revocations be considered valid.

As to witnessing, the government has proposed adopting the same arrangements as those currently practised by the Hospital Authority, of which there are two notable features. The first is that the making and modification of an AD requires two witnesses, one of whom must be a medical practitioner. As part of the witnessing requirement, a capacity test for the making of the AD is included, namely that the medical practitioner should be satisfied that the person has capability to make an AD, and has been informed of the nature and effect of the AD and the consequences of refusing the treatments specified in the AD.²⁶ The second is that revocation can be made verbally or in writing. No witness is required for written revocation, but at least one witness who has no interest in the estate of the person making the AD is required for verbal revocation, and a second witness is required for the report of verbal revocation made by a single family member or carer. A person can also revoke his own AD by tearing it up or otherwise destroying it or asking some other person to do so in his presence and by his direction.

There will not be any central registry for AD, but a flagging alert is currently set up within the Hospital Authority Clinical Management System (CMS) to facilitate communication, even though the information contained therein is used only as a reference. The government is currently considering the feasibility of leveraging the existing Electronic Health Record Sharing System (eHRSS) to store and allow access to AD records by designated healthcare professionals and of accepting certified true copies of ADs to ensure that a patient’s trusted family members or carers can produce the AD in timely fashion. Original AD documents would still be required as proof because storing records in the eHRSS is voluntary and there might be the possibility of a time lag between the latest status of the AD and its record in the eHRSS. Further, given that it may not be practicable to require emergency rescue personnel to first find out the eHRSS record of an AD while carrying out resuscitation at the same time, the government is also proposing that emergency rescue personnel may rely on the production of an original AD document attached to a signed DNACPR form, and it would be the responsibility of the individual/family to draw the attention of emergency rescue personnel to the existence of the AD.

7.3.3 Safeguards

The following safeguards are required to be implemented to ensure the validity of an AD. First, in normal circumstances, the original copy of the AD should be presented. If a valid AD is said to exist, but the original copy is not immediately available, the treatment provider should continue to provide emergency life-sustaining treatment while waiting for clarification. However, if the treatment provider (e.g. a clinical team) knows that a valid and applicable AD exists and the patient’s family members agree, then the patient’s advance refusal of such treatment should be respected.²⁷

Second, the AD should be sufficiently clear and not under challenge, for example on the grounds of undue influence or lack of capacity. If an AD is challenged at the scene, its validity must be regarded as in doubt, and the treatment provider should continue to provide emergency life-sustaining treatment while waiting for clarification. Third, the AD must not have been withdrawn. Finally, the person must not have done something that clearly goes against the AD, thereby suggesting that he has changed his mind.

Safeguards should also be afforded to treatment providers. They should not incur any civil or criminal liability (i) for carrying out or continuing a treatment if, at the time, they reasonably believe that a valid and applicable AD does not exist or (ii) for the consequences of withholding or withdrawing a treatment from an individual if, at the time, they reasonably believe that a valid and applicable AD exists. The same applies to CPR emergency rescue with/without a DNACPR form.

7.3.4 Non-hospital Settings

In an emergency situation, when an unconscious patient with impending cardiac arrest is seen by emergency rescue personnel, it can be difficult for them to tell whether the patient is in a condition specified in his AD. Accordingly, the Hospital Authority developed guidelines and a DNACPR form (specifying that CPR not be performed on a person when cardiac arrest is anticipated) for non-hospitalised patients in 2014. Doctors who sign the DNACPR form certify that the AD is valid and applicable. The government is now proposing the following: (i) that after ADs are legislated, emergency rescue personnel should respect a valid and applicable AD presented to them; (ii) to amend the FSO accordingly to enable such personnel to accept DNACPR forms (with or without an AD);²⁸ and (iii) to use a statutory prescribed DNACPR form for the sake of simplicity, instead of a non-statutory prescribed form.

7.4 Discussion

While the move to legislate on ADs is a welcome one, there remain legal obstacles to overcome. The government has stated that it is not prepared to enact all-encompassing legislation on mental incapacity, which would impact upon such areas as ADs, healthcare decision-making by attorneys and guardianship.²⁹ It is also unlikely for the government to overhaul the outdated mental health legal regime in Hong Kong. Consequently, the piecemeal attempt of the government at codifying the law on ADs is inadequate for two reasons. The first relates to inconsistencies or ambiguities in existing law. In addition to proposing separate legislation on ADs, the HK government is also currently proposing new legislation on continuing powers of attorney, which will cover health, welfare and other personal matters. These new laws will add to existing decision-making tools, such as enduring powers of attorney. Such a piecemeal approach to legal regulation fails to take into account the fact that these are all components in the overall promotion of autonomy of the individual concerned, and need to be viewed in this larger context. Without an overhaul of mental health law in Hong Kong that considers all of these tools in a holistic manner, there may be ambiguities in the definitions of legal terminology and unclear overlapping boundaries or even inconsistencies between different legal tools.³⁰

The second reason is that the lack of an overarching mental capacity test results in ambiguity as to what the test for mental capacity in relation to the making of ADs in Hong Kong should be. As discussed previously, the proposed formulation is that the medical practitioner must be satisfied that the person has the capability to make an AD, but what this capability entails is not further elaborated upon. There are several formulations of the capacity test that may apply, as detailed next.

Common law. The common law test for capacity that applies in Hong Kong is the test as developed by case law in the United Kingdom prior to the enactment of the Mental Capacity Act 2005. The steps of this test are generally taken to be the three steps as described in the foundational case of Re C³¹, namely: (i) whether the patient is capable of understanding and retaining the treatment information; (ii) whether the patient believes it; and (iii) whether the patient is capable of weighing that information, balancing risks and needs. In the context of ADs, further principles as to the scope of anticipatory refusals can be found from the cases of Re T and Bland³². Taken together, these cases and principles demonstrate how one’s capacity to make an AD should be assessed, looking at both (i) the individual’s ability to refuse a particular medical treatment and (ii) whether or not the individual intended for the anticipatory refusal to apply to the future circumstances in question.

Mental Health Ordinance. The MHO contains a different capacity test for the consent to treatment of mentally incapacitated persons, which, for this part of the MHO, is defined as either (i) a ‘patient’, or a person suffering or appearing to be suffering from mental disorder or (ii) a ‘mentally handicapped person’, or a person with sub-average general intellectual functioning with deficiencies in adaptive behaviour.^{33, 34} The test, as contained in section 59ZB(2) of the MHO, is whether the person is capable of understanding the general nature and effect of the treatment or special treatment. Putting the flaws of this test to one side,³⁵ this is a different test for capacity to the consent of treatment that only applies to individuals defined as mentally incapacitated in the MHO, suggesting that, for such individuals, the section 59ZB(2) test should be used instead of the common law Re C test to assess the individual’s ability to refuse that treatment. If this is to be the correct approach, how do we justify and reconcile the fact that two different tests are being used in the same context?

Hospital Authority guidelines. In addition to the two legal tests described previously, other relevant capacity tests have been laid out in various guidelines issued by the Hospital Authority. While these tests are not legally binding, they constitute the practice guidance that doctors in the public sector follow when implementing the law, and thus are worthy of consideration. Two formulations of the test for capacity are laid out here:

1. (i) ‘A competent adult is defined as one with decision-making capacity, which consists of the elements of (i) the ability to understand the medical information presented; (ii) the ability to reason and consider this information in relation to his own personal values and goals; and (iii) the ability to communicate meaningfully.’ (from the Hospital Authority’s Guidelines on In-Hospital Resuscitation Decisions, issued in 1998).

2. (ii) ‘To demonstrate capacity to refuse treatment, individuals should be able to:

   1. a. Understand in simple language what the medical treatment is, its purpose and nature and why it is being proposed;

   2. b. Understand its principal benefits, risks and alternatives;

   3. c. Understand in broad terms what will be the consequences of not receiving the proposed treatment;

   4. d. Retain the information for long enough to make an effective decision;

   5. e. Use the information and weigh it in the balance as part of the decision-making process;

   6. f. Make a free choice (i.e. free from pressure).’ (Adopted from the British Medical Association in the Hospital Authority’s most recent Guidelines on Life-sustaining Treatment in the Terminally Ill (2020)).

Both of these formulations are notably different from the two legal tests described previously, with the 1998 and 2020 formulations additionally requiring a higher level of reflection and a voluntariness requirement, respectively, which are not generally required for decisional capacity as defined by the law. In addition to contributing to the chaos that is the definition of mental capacity in this context in Hong Kong, the fact that the Hospital Authority saw it necessary to lay out its own tests for capacity suggests that they felt that the current position was inadequate, or at least not clear enough.

Thus, while the legislative initiative for ADs is no doubt welcome, the importance of legislating a unified, statutory capacity test cannot be understated. The unwillingness of the government to deal with this issue may cause ambiguity and difficulty in the implementation of ADs by medical practitioners in the long run.

7.5 Local Practice, Value Commitments and Sociocultural Influences

Turning to the practice of ADs in Hong Kong, the number of ADs signed in recent years has been on the rise. The number of ADs signed by Hospital Authority patients between the years of 2012–18 is as follows:³⁶

Year	Month	Number of ADs signed
2012	From August 21 to December 31	150
2013	From January 1 to December 31	325
2014	From January 1 to December 31	491
2015	From January 1 to December 31	706
2016	From January 1 to December 31	937
2017	From January 1 to December 31	1395
2018	From January 1 to December 31	1557
Total number of ADs signed		5561

There has been some suggestion that this tenfold increase in the number of signed ADs is not indicative of an increase in awareness or acceptance of ADs generally, but rather a result of the changing demographic of service users of the Hospital Authority, who take care of a disproportionately high percentage of persons with life-limiting illnesses.³⁷ This is consistent with empirical research that has demonstrated both a low level of awareness and a low uptake of ADs in Hong Kong.³⁸

While the general lack of awareness about ADs may be readily explainable by inadequate promotion and education,³⁹ an interesting phenomenon that warrants further investigation is what appears to be a discrepancy between positive attitudes towards ADs and the actual making of ADs. For example, Chan et al.’s study (2019) found that, while only 368 of their participants (18.4%) had heard of ADs, the vast majority of those (80.2%, or 295 people) said they had made or intended to make an AD.⁴⁰ Out of these 295 people, however, only 11 of them had actually made an AD (i.e. only 3.7%). While not all studies have been able to demonstrate such a high level of positivity in attitude towards ADs,⁴¹ there remains a significant discrepancy between reported attitudes towards ADs and actual uptake of ADs.

Although the reason for this discrepancy requires further study, some preliminary comments may be offered. There is of course the question of whether such positive attitudes towards ADs as reported by patients are reflective of their true preferences, but, assuming that they are, there appears to be some difficulty in the translation of that preference into action. This could be due to several reasons, two of which are briefly explored here. The first is resistance from family members and/or caregivers. Studies have shown that family members often feel compelled to maintain the patient’s life, and are unwilling to forgo life-sustaining treatment. This stems from a strong belief in Confucian filial piety, according to which ‘everything must be done’ to save the patient, even if this may not be in line with the patient’s own preferences.⁴² This resistance from close family members can be a crucial factor contributing to the failure of the person to make an AD, because the unit of decision-making in Chinese culture, and in particular medical decision-making, is generally seen as the family.⁴³ As Fan and Li have argued, families are autonomous entities that are themselves the source of legitimating authority.⁴⁴ Because the family is the autonomous unit, medical decisions need to be made by the family as a whole, and not by the person herself.⁴⁵ This means that where there is strong objection from the family, the person will not likely proceed with an AD even if that is her preference. There is thus a need to encourage not only education and promotion targeted towards individuals who might wish to make ADs, but also their family members, such that open discussions between family members about one’s end-of-life preferences can be encouraged. This, in turn, will make it more likely that family support for a decision to make an AD can be obtained, making the individual more likely to proceed with the AD.

The second reason is the lack of effective communication and coordination on the part of healthcare and other professionals regarding the making of ADs. While a person may be inclined to make an AD, a number of institutional factors may have a large effect on whether this is put into action. Cheung et al., for example, present a compelling case of “unprepared healthcare professionals and healthcare system” as one of the barriers to advance care planning more generally.⁴⁶ One of the various examples of this was a patient’s experience with an oncologist, who kept persuading him to receive treatment despite an expressed reluctance to receive futile life-sustaining treatment. Chan et al.’s study also sheds some light on the importance of the role of healthcare professionals. When asked, the majority of their participants expressed that they would agree to making ADs (to varying degrees) in the following scenarios: (i) if healthcare professionals can provide a clear explanation and recommendation on ADs, (ii) if there is effective communication and coordination among healthcare professionals at different institutes to execute their decisions, and (iii) if they could have a thorough discussion and follow-up with health professionals about ADs. This demonstrates the importance of healthcare professionals in facilitating the process of making an AD, and is consistent with the significant trust that is placed in medical practitioners by patients in Chinese culture.⁴⁷

7.6 Conclusion

In light of Hong Kong’s rapidly ageing population, and the resulting, inevitable increase in the demand for high-quality end-of-life palliative care services, there is a crucial need to identify and examine policy and infrastructure gaps in end-of-life care in Hong Kong. One key area that needs to be addressed is the regulation and implementation of the AD, an important tool that encourages discussions about end-of-life care and allows for an individual’s wishes to be clearly documented and carried out. This chapter has first examined the legal and institutional framework of ADs in Hong Kong, in particular the government’s latest proposal in legislating ADs which is a positive step in the right direction despite some remaining legal obstacles to overcome. The chapter then highlighted the socio-familial influences that may hinder the government’s attempt to expand the take up of ADs. In a society where the family is often seen as the unit for healthcare decision-making, and Confucian doctrines like filial piety are a driving force behind the behaviour of family members at the end of life, the AD is perhaps even more important as a way to initiate end-of-life care discussions with one’s family, so as to make clear one’s wishes to the family and engender support from the family for one’s end-of-life care preferences.

Hong Kong has come a long way since the Hospital Authority first included a discussion of ADs in its 2002 Guidelines for Life-sustaining Treatment in the Terminally Ill. While the government’s proposal for AD legislation is a significant step towards facilitating large-scale uptake of ADs across Hong Kong, there remain both legal and practical obstacles that need to be confronted. In relation to the former, the validity and application of an AD rely heavily on a workable and consistent definition of mental capacity, which is something that Hong Kong does not currently have and will not likely have in the near future. In relation to the latter, the inadequacy of promotion and education about ADs needs to be tackled on a systematic basis, to address the clear gaps in awareness across Hong Kong society. This promotion and education needs to target not only individuals who may make ADs, but also family members and caregivers, whose insufficient understanding of ADs may currently prevent them from supporting the making of ADs by their family members.⁴⁸ Improvement of support from healthcare professionals at the institutional level is another key area that needs to be urgently addressed. Finally, because empirical research in this area in Hong Kong has mostly focused on the making of ADs, there is little to no information about the interpretation and implementation of ADs by healthcare professionals. This is a gap that needs to be addressed – a better grasp of how ADs are implemented after they are signed is crucial to our understanding of ADs in the Hong Kong context.

8 The Law and Practice of Advance Directives in the Islamic Republic of Iran

Zain Abbas Syed , Ehsan Shamsi-Gooshki & Alireza Parsapoor

8.1 Introduction

Unlike other patient populations, end-of-life patients suffering a terminal illness often lose the capacity to make healthcare decisions. Advance directives (ADs) are one method for addressing such loss of capacity. They permit the decisions of competent patients about future treatments to be recorded for enactment if/when they lose mental capacity.

At present, physicians in the Islamic Republic of Iran tend to expend, often reluctantly, numerous resources caring for patients approaching the end of life. In fact, in a 2015 JAMA study comparing 16 Asian countries, Iranian physicians were among the least likely to withhold or withdraw treatment when presented with two scenarios of patients with no real chance of recovering a meaningful life.¹ Their response may have been influenced by the absence of ADs allowing the refusal of futile life-sustaining interventions in end-of-life patients, which are often demanded by relatives, as well as the lack of legislative and regulatory support for an alternative approach. A lack of hospice and in-patient/community palliative care services also provides Iranian physicians with few alternatives. The current situation imposes a significant financial burden on Iran’s predominantly publicly funded national healthcare system, as well as on patients and their relatives, and results in suboptimal patient-centred outcomes during terminal illness.

There is therefore reason to believe that ADs could play a useful role in reducing futile healthcare expenditure on and interventions for end-of-life patients, alleviating guilt among relatives for taking decisions to withdraw/avoid futile treatments and promoting patient autonomy in a healthcare culture that is largely family centric. AD implementation must, however, be sensitive to Iranian culture and social norms, including respect for the Islamic doctrine to which the nation and its infrastructure subscribe. Unfortunately, Islamic discourse on end-of-life healthcare ethics is rife with controversy, including on such issues as defining and determining death, the limits of personal autonomy and the freedom to refuse life-sustaining medical interventions even as a competent patient let alone once capacity has been lost. Therefore, the typical paradigm of honouring patient wishes, as expressed in an AD, to optimise patient-centred outcomes is not easily translatable in Iran.

Our discussion begins with a brief introduction to the history/culture of medical ethics and law in Iran. We then discuss the current legal status of ADs in Iran, including the criteria for their validity and their reliance on a surrogate decision-maker. We next reflect on the multitude of factors affecting the current (lack of) AD implementation in Iranian hospitals and community healthcare settings, including a critical-normative reflection on cultural, Islamic, legislative and infrastructural factors. We conclude by recommending a model for advance end-of-life decision-making in Iran. Although ADs can apply to a vast range of end-of-life treatment decisions such as artificial nutrition/hydration, resuscitation and hospital admission, our main example of AD application pertains to the withholding of life-sustaining treatment from terminally ill, mentally incapacitated patients. We also focus on ADs in the medical as opposed to psychiatric setting.

8.2 A History of Medical Ethics and Law in the Islamic Republic of Iran

Historically, the Iranian Zoroastrian medical tradition featured several commonalities with the Hippocratic tradition, although the latter’s influence took hold during the Hellenistic period following Alexander III of Macedon’s invasion of Iran and the subsequent migration of Nestorian Christians and Neo-Platonists to the interdisciplinary school of Gondhishapour in the then capital of the Iranian kingdom. Islam then entered the Iranian establishment in the seventh-century Sassanid period. The subsequent Golden Era of Iranian-Islamic medicine inspired the expansion of Hippocratic/Galenic medical ethical discourse, as seen in books such as Ādāb al-Ṫabīb (Practical Ethics of the Physician) by Al-Ruhawi, as well as Islamic medical theo-legal doctrine surrounding abortion, physician liability, patient consent and surrogate decision-making. However, owing to the prevalence of Ashʾariy thinking, which opposed the use of philosophical reasoning in the derivation of ethics, most Islamic works on medical ethics followed a virtue ethics-based approach without reference to theoretical/religious reasoning. That approach continued until the establishment of modern medical schools in Iran in the twentieth century. However, the Islamic Revolution of 1979 gave rise to a novel bioethical movement in Iran, with the [Shia] Muʾtazali approach demonstrating that a reason-based juristic methodology was effective in responding to sensitive, modern bioethical issues, cementing the role of religious reasoning and derivation (through theology, law and ethics) as a tangible objective and standard of medical practice.²

In 1979, Ayatollah Ruhollah Khomeini, a jurisprudent-cleric from the Holy City of Qom, spearheaded a popular revolution to depose the Pahlavi monarchy in Iran. Widespread public discontent led the nation to reject the monarchy and vote in favour of an Islamic theocratic democracy, at the heart of which lay the doctrine of the Guardianship of the Jurist,³ granting divine authority to said Islamic Jurist to establish a government serving the interests of the Muslim nation, including the protection and propagation of its religious identity and infusion of Islamic doctrine into its state and public institutions. In the years since, Iran has experienced major academic and technological advances, including multidisciplinary engagement in the rapidly expanding field of Islamic bioethics/law, which has led to the ratification and implementation of several medical laws, including laws on the therapeutic termination of pregnancy, assisted reproductive technology, organ donation and brain death, as well as the integration of bioethics teaching into undergraduate medical syllabi and establishment of hospital ethics committees and national bioethics research centres. Thus, medical ethics is now among the most rapidly expanding, topical and translational academic fields in Iran.

8.3 The Regulation of Biomedical Ethics in Iran

To appreciate the legal position of ADs in Iran, one must first appreciate the basic structure of the Iranian Government and legislative apparatus. Essentially, the public elects the President, Members of Parliament and the Assembly of Experts. The latter consists of a chamber of religious jurists tasked with appointing the country’s Supreme Leader (Waliy-i-Faqih), who must be a religious jurist. The Supreme Leader and Parliament together appoint the Guardian Council consisting of six lawyers and six Islamic jurists, whose tasks include the ratification (or rejection) of laws passed by Parliament based on whether they are in keeping with Shariah (Islamic law) and the Constitution. In the event of disagreement between the Guardian Council and Parliament, an Expediency Council appointed by the Supreme Leader mediates a resolution. Importantly, Iran has a Romano-civil legal system, although, unlike in other civil law countries such as France, Iran recognises the legally binding nature of a fatwa (edict/judgment) issued by an Islamic jurist in areas for which there is no statute or by-law (Article 167, the Constitution).⁴

Today, medical practice in Iran is governed at three levels: by statute laws, executive by-laws and official regulations/guidelines. The latter two gain legal standing through acts of legislation that empower state ministries/councils to implement by-laws or official regulations, as per Article 138 of the Constitution,⁵ which grants individual ministers the right to “frame regulations and issue circulars in matters within their jurisdiction”. This three-level hierarchy is demonstrated in the legal regulation of organ donation in Iran:

• Statute law: The Law on Organ Transplantation of Dead Patients or Patients in Whom Brain Death Has Been Confirmed (2000) -Parliament of the Islamic Republic of Iran-.⁶

• Executive by-law: Ratified by the Council of Ministers as per the recommendation of the Ministry of Health and Medical Education (MOHME), including particulars of the Statute’s implementation and standards.⁷

• Official regulation: Published by the National Clinical Ethics Committee (and ratified by MOHME) on the necessity to confirm brain death and implement do-not-resuscitate (DNR) orders for such patients regardless of organ donor status.⁸

Iran has several national ethics policymaking bodies responsible for composing guidelines and regulations at the tertiary level. The Supreme Council on Medical Ethics (SCME) is the highest such body and participates in approving MOHME frameworks. It is chaired by the Minister for Health and Medical Education and includes representatives of the Iranian Legal Medical Organisation (medical forensics, including regulation of pregnancy termination), the Islamic Republic of Iran Medical Council (IRIMC) (a physician licensing body) and other important health institutions/stakeholders. The SCME reviews and provides final approval for ethical guidelines produced by second-tier policymaking bodies, including the National Clinical Ethics Committee (NCEC), National Committee for Ethics in Biomedical Research (NCEBR) and National Committee for Ethics and Medical Education (NCEME). The NCEC was established for policymaking, supervisory and decision-making activity in the field of clinical ethics, whilst the NCEBR and NCEME are responsible for research ethics and medical education ethics, respectively.

8.4 Advance Directives in the Legal System of Iran

Although ADs are essentially unutilised in the Iranian healthcare system (see next section), the law provides for their potential use, albeit only as a guide to decision-making (an advance recommendation) rather than a binding advance directive. As there is no statute law regulating ADs, AD implementation is primarily governed at the tertiary level of official regulations under the SCME Iran Charter of Patient Rights (2009) and IRIMC General Guidelines of Professional Ethics (2020).

The Iran Charter of Patient Rights (2003, revised 2009) was composed to elaborate on Article 29 of the Constitution, which recognises health/treatment services and medical care as a “universal right”. The first version (2003) of the charter commented on classical issues such as the right to the best possible treatment, confidentiality and the consent/refusal of treatment except in emergencies. However, owing to its wording and lack of auditing and stakeholder consultation, it lacked effective implementation.⁹ Therefore, a revised version was spearheaded by Parsapoor et al. at the Medical Ethics & History of Medicine Research Centre at Tehran University of Medical Sciences.¹⁰ The 2009 version followed extensive stakeholder consultation, was developed with special attention to the cultural issues of Iran and avoided contradiction with Islamic law. It is also patient centric, and, in chapter 3, elaborates on the issues surrounding autonomy, decision-making, ADs and surrogate decision-making.

In addition, in 2020 Shamsi-Gooshki et al., under the auspices of the IRIMC, composed the General Guidelines of Professional Ethics to act as a subsidiary to the disciplinary by-law.¹¹ Currently, the IRIMC Disciplinary By-Law is a general document, which, in Article 6, instructs the IRIMC to develop professional ethics guidance, thereby explicitly stating the ethical obligations and standards of medical professionals, including extensive elaboration in areas such as respect for patient autonomy.

Importantly, both documents are legally enforceable, not just “best practice guidelines” unless retracted by the Court of Administrative Justice. The charter gains its status by merit of its endorsement by MOHME and Article 138 of the Constitution. In the case of the Professional Ethics Guidelines, the statute establishing the IRIMC grants it the authority to take disciplinary action against its members (licensed physicians) for noncompliance with its professional guidelines. Thus, noncompliance with these codes of practice is a matter of both professional and legal compliance. In fact, they have recently been referred to in official court rulings on physician liability/negligence.¹²

Chapter 3 of the charter specifies that “every individual has the right to a free choice and decision about receiving healthcare services”, including the right to “reject proposed treatments after being informed of the medical consequences of their decision except in cases of suicide or harm to others”. The charter also emphasises optimising capacity to make autonomous decisions: “[I]f the patient lacks sufficient capacity to make decisions, but can participate in some parts of decision making reasonably, their decision must be respected”.

Section 3-1-5 of the (original Persian language)¹³ charter stipulates that the scope of individual choice in healthcare decision-making includes “[a] patient’s registered advance directive made at a time when the patient retained capacity for decision making to be used to guide medical treatment when the patient lacks capacity for decision making, provided it is in keeping with the legal requirements of the healthcare team and the surrogate decision-maker [SDM]” (emphasis added). The first point to note is the essential loss of (legal) autonomy that is incurred upon a patient’s loss of mental capacity in Iran. In fact, the (legal) decision-making rights of an incompetent patient are passed in full to their SDM when they lose capacity (elaborated upon later). Therefore, the SDM is obliged to use a registered AD, if it exists, only to guide their decision on the patient’s behalf. The second point is that, in addition to the basic criteria for informed consent/refusal, the criteria for a valid AD include the following:

8.4.1 Registered

There is currently no national/regional registry for ADs in Iran, and therefore no clear mechanism for healthy patients to register their wishes in advance. Thus, the mechanism for potential AD registration envisaged by the charter is currently limited to an inpatient environment in which an unwell patient is consulted regarding their prognosis and future treatment decisions, and their wishes are documented in the patient’s notes. This constitutes “registration”, that is, documentation. The charter does not elaborate on any procedural requirements for such documentation, such as the necessity for witnesses or multidisciplinary team involvement.

8.4.2 In Keeping with the Legal Requirements of the Healthcare Team

In broad terms, an AD is invalid if it requests a physician to carry out a treatment that contradicts their professional obligations or expected standards of practice, as outlined in the Professional Ethics Guidelines. Thus, ADs are void if they request illegal procedures or those deemed negligent/liable, including euthanasia. By extension, ADs must also respect the usual standards of consent in competent patients, including not requesting treatments/procedures outside “options deemed scientifically/technically reasonable/authentic” (Chapter VII Article 67, the Professional Ethics Guidelines). Importantly, the charter obliges physicians to deliver “appropriate healthcare”, which includes consideration of the justice of healthcare resource allocation, respect for patient dignity, the avoidance of unnecessary pain and palliation approaches.

Currently, there are no clear guidelines on how to address situations in which patients express their wish, via an AD, to refuse an intervention but are likely to die or suffer serious harm due to the refusal. Interestingly, however, the Professional Ethics Guidelines, in the case of patients possessing capacity, oblige doctors to make their “best effort to convince the patient” and, if unsuccessful, to “refer the case to the hospital ethics committee”. As ADs are not currently practised in Iran, it is unclear whether the same approach, attempting to convince the patient and referring him/her directly to the hospital ethics committee, applies to the patient’s SDM. What is clear, however, is that patient autonomy does not by default trump the preservation of life in the current Iranian-Islamic legal system, and the issue remains controversial in Islamic legal discourse.

8.4.3 In Keeping with the Legal Requirements of the Surrogate Decision-Maker

According to the charter, “[i]f the patient is not able to make decisions for any reason, all patient rights mentioned in this charter apply to the [SDM]”, irrespective of whether an AD exists. The SDM (the valiy or “guardian”) is a phenomenon rooted in the Islamic Guardianship Law.¹⁴ Essentially, the legal guardian (and SDM) of a child (defined in Islamic law as a person below the age of puberty) is the child’s father or paternal grandfather. After puberty (and “mental maturity”), a person becomes their own legal guardian. If during adulthood, a patient loses decision-making capacity, Iranian law recognises the patient’s father or paternal grandfather as their guardian. In the absence of a father/paternal grandfather (which is the case with the majority of elderly patients admitted to hospital), the Islamic Jurist becomes the default guardian (and SDM) tasked with making best-interest decisions on the patient’s behalf in all walks of life, including health. In theory, the Islamic Jurist in question is the Supreme Leader, although in practice such authority is indirectly transferred to a regional/local judge in a Court of Islamic Governance. The judge should then vet and appoint an individual (usually a family member) to act as an SDM/guardian on his behalf. However, if an adult has never possessed “mental maturity”, owing, for example, to a syndrome/disability since childhood, then the guardianship of their father/paternal grandfather continues by default into the person’s adulthood without intervention from the Islamic Jurist. If the father/paternal grandfather passes away, then guardianship (and SDM) rights pass to the Islamic Jurist (i.e. the courts) and follow the process outlined previously for appointing a relative as SDM.

SDMs are a necessary part of the healthcare system in Iran, as a legal decision-maker is required for an incapacitated patient. The Islamic Jurist is obliged to appoint the party who is best placed to protect the patient’s best interests and make decisions on their behalf (usually a close relative). An AD is not a legally binding decision in this context because there is no recognition of precedent autonomy in Iranian-Islamic law. Thus, it can at most serve as a guide for the SDM’s decisions.

There is currently no official guidance on the procedure for an SDM who wishes to act in opposition to a registered AD. However, according to the charter, where “the surrogate decision-maker is opposed to treatment, against the physician’s advice, the physician can refer to related authorities [e.g. the hospital ethics committee] for reconsideration”. This clause essentially exists to safeguard patients when there is suspicion that an SDM is making decisions that are not in the patient’s best interests or when there is a conflict of interest (e.g. avoiding treatment costs to maximise personal inheritance). However, the more likely situation is that of an SDM requesting a futile intervention, such as continuing antibiotics for a dying patient, in opposition to that deemed appropriate by the treating physician. In this situation, the physician would be advised to consult the hospital ethics committee if efforts to negotiate the issue on the ward were unsuccessful.

8.5 Advance Directives in Practice

Whilst Iranian law provides for the potential use of ADs, in our experience they are essentially non-existent in Iranian hospitals and community healthcare settings. That said, there is some evidence that Iranian doctors and nurses support the use of ADs for decisions about resuscitation,¹⁵ with one study demonstrating nurses’ explicit support for honouring the previously declared wishes of patients, including the wish not to receive life-prolonging treatment.¹⁶ However, the authors are unaware of any other studies in either English or Persian on AD usage rates or the implementation of or barriers to ADs in Iran. We are also unaware of any best-practice/clinical guidelines specifically on AD implementation from Iranian medical associations or hospital ethics committees.

Nonetheless, efforts are being made to develop the practice of appropriate end-of-life decision-making in Iran. For example, many cancer patients with progressive/terminal prognoses benefit from advance care plans (ACPs) to limit futile interventions such as cardiopulmonary resuscitation (CPR).¹⁷ The Shahid Beheshti University of Medical Sciences, Tehran, also recently published detailed clinical practice guidelines on palliative care for end-stage cancer patients, including recommendations for ACPs and the avoidance of futile interventions such as CPR.¹⁸ It would be fair to say, however, that the practice of avoiding CPR is not in widespread use nationally. Also, although ACPs constitute a beneficial approach for cancer patients, ADs aim to capture a much wider population, including those admitted to hospital without a known terminal diagnosis. In this context, the authors believe there is value in reflecting on current literature on the landscape of end-of-life decision-making in Iranian healthcare to better understand the context in which ADs could be practised. We draw in particular on the literature on DNR orders, of which there is a good amount, as a type of life-sustaining intervention withheld from end-of-life patients on the basis of practitioner-determined medical futility.

It is evident from the literature that there is support from both society and healthcare professionals in Iran for an approach that limits the use of futile, life-sustaining interventions in patients approaching the end of life. For example, studies show the practice of DNR orders to be present to some degree in Iranian hospitals,¹⁹ with the majority of doctors,²⁰ nurses,²¹ relatives²² and even patients supporting the practice.²³ The common reasons offered for such support include protecting the dignity of the patient,²⁴ reducing futile interventions,²⁵ economic costs and pain/suffering,²⁶ and relatives sacrificing their own use of health resources for others.²⁷ Most of the participants in these studies agreed that DNR decisions should be led by physicians²⁸ with the consent of the patient/relatives²⁹ and in conjunction with the wider healthcare team. Interestingly, physicians were found not to support DNR orders for those not at risk of imminent death (i.e. those with a 6–12 month prognosis),³⁰ a stance mirrored in one hospital’s palliative care guidelines.³¹

Whilst the relatives involved in the studies discussed here generally supported DNR orders, relatives can still play a key part in preventing their implementation. In contrast to the perception of healthcare professionals, patients’ relatives disagree that resuscitation is “undignified”.³² It is also a matter of conscience for Iranian families to feel that they have done their utmost for the patient to avoid guilt.³³ It may also be the case that families disagree with physicians’ suggestions for palliation and apply pressure for maximal intervention owing to poor communication on the latter’s part regarding patients’ poor prognosis.³⁴ Such poor communication may be related to the difficulties perceived by healthcare professionals of discussing dying/DNRs with patients/relatives,³⁵ as well as their expected role in prolonging life³⁶ and even providing hope to patients despite their imminent death.³⁷ It may also reflect a general weakness in communication skills and in the physician–patient relationship in Iranian healthcare culture. We will explore these issues further in the next section.

In sum, we can see that there is societal and professional support in Iran for restricting the use of futile interventions in terminally ill/end-of-life patients, as well as for the necessity of patients’ advance participation in such decisions. It is unlikely, however, that ADs could function outside the terminal illness/end-of-life context. AD implementation clearly requires management of the emotional and cultural dynamic of relatives’ perceived role in patient care, as well as of their expectation to receive comfort/hope from physicians in addition to physicians’ duty to deliver candid and honest information on prognoses.

8.6 Critical Analysis of the Reasons for the Lack of AD Use in Iran

In this section, we distil the literature to answer a simple question: What are the factors currently preventing the utilisation of ADs in the Islamic Republic of Iran?

8.6.1 Legal

Clause 295 of the Islamic Penal Code specifies that when a duty (e.g. of care) is neglected, a penalty is applicable to the person entrusted with that duty. This means that, by default, medical practice in Iran is often defensive, with the objective of avoiding liability by favouring life-prolonging interventions. Despite evidence of support for DNR orders among healthcare professionals, there is also evidence of ignorance and fear of legal retribution among physicians/nurses regarding commencing, signing or implementing DNR orders.³⁸ As mentioned previously, the fact that Iran has a civil legal system means that physicians look to and expect written guidelines at the least and executive by-laws or parliamentary statutes at best to govern the practice of ADs and DNRs. In the absence of clear statute law governing this area, it is difficult for Iranian healthcare professionals to abandon their defensive stance, particularly when faced with pressure from relatives to engage in maximal intervention. At the same time, the Professional Ethics Guidelines (Article 27, Chapter IV) forbid futile intervention for fear of litigation, although they fail to clarify the exemption from litigation in the case of ADs to refuse life-sustaining interventions. This creates a dilemma for Iranian physicians. For the sake of brevity, the authors refer readers to the PhD thesis of Shamsi-Gooshki,³⁹ who concluded that according to Islamic, civil, criminal, and professional liability standards and laws, DNR orders can be considered legal and judges may not hold a physician liable for implementing such an order.

Furthermore, the practice of surrogate decision-making in Iran has not taken place in the way envisaged by the charter, largely because it requires a lengthy legal process that conflicts with the obligation to provide timely care. Therefore, physicians usually consult the relatives/next of kin present at the bedside, which constitutes accepted practice in Iranian culture. This, despite being unlawful, has received little known opposition from the legal authorities. Nevertheless, Mirzaei et al. reported that “the people we usually consult for decisions concerning patient treatment are significantly different from the patients’ preferred substitute decision-maker”.⁴⁰ They also showed that there is no clear demographic predictor in Iranian society regarding preferred SDMs, for example, a wife choosing her husband, parents choosing their eldest son, and that the preference is highly subjective and based on the individual patient’s circumstances. That said, the lack of an official, legally appointed SDM would not be a reason to invalidate or devalue a registered AD, which would retain its place as a useful guide to patient preferences for whoever assumes the decision-making role, even if such decision-makers do not currently have authority according to the letter of the law.

8.6.2 Islamic

The three levels of the legal regulation of bioethics in Iran are all subject to the “sieve” of Islamic law, meaning that any laws, by-laws or official regulations/guidelines must be consistent with Shariah or face rejection by the Guardian Council (in the case of statutes) or the Court of Administrative Justice (in the case of by-laws and official regulations/guidelines). Thus, the Islamic legal stance on the issue of ADs is extremely important.

(Shia) Islamic law is derived from four canonical sources: the Koran, Hadith (verbal narrations from the Holy Prophet and his family, peace be upon them), ʿAql (logic) and Ijmāʾ (consensus of jurists). Shia Islamic jurists, referred to as Mujtahids or colloquially as Ayatollahs, receive several decades of vigorous training in religious seminaries in the traditional Islamic sciences, including Arabic grammar, logic, theology, philosophy, jurisprudence, history, Hadith, exegesis and many more in order to be able to independently derive law from primary canonical sources. Normative Islamic laws are divided into five types: Wajib (obligatory), Mustahab (recommended), Mubah (permissible), Makruh (not recommended) and Haram (impermissible). The avoidance of a wajib action or committing of a haram action warrants divine punishment; hence, much of an Islamic jurist’s work involves trying to understand these “red lines” of the Shariah and feeding such understanding into a practical legal system such as that functioning in Iran. The final edict of a Mujtahid is known as his fatwa, or ruling, on a specific topic; for example, the fatwa for abortion is impermissibility unless certain conditions are met. Importantly, within the Shia clerical institution, Mujtahids are arranged in a hierarchy. A Faqih is a higher level Mujtahid who has broad understanding of various Islamic legal disciplines and teaches others to become Mujtahids. Higher on the hierarchy is a Marjaʾ (colloquially known as a “Grand Ayatollah”) who is recognised as the most knowledgeable among the Fuqaha (pl. Faqih) and publishes a book of Islamic Edicts (Risalah ʿAmaliyyah) on day-to-day issues faced by Muslims in, for example, the areas of cleanliness, prayer, fasting, transactions/economics, marriage, divorce and medical issues. It is these Marajiʾ (pl. Marjaʾ) whom lay Shia Muslims are obliged to follow on day-to-day issues, including normative healthcare decision-making. There are currently several recognised Marajiʾ in the Holy City of Qom (Iran) and the Holy City of Najaf (Iraq), which are the two main religious seminaries of the Shia world. Naturally, having numerous Marajiʾ creates a diversity of opinion, which can create challenges for the Iranian legal system when deciding whether to accept or reject a parliamentary statute. However, the current practice of the Guardian Council and Court of Administrative Justice is to respect the viewpoint of the Supreme Leader (who is also a Grand Ayatollah) or, in areas where he has not issued a fatwa, to choose among the viewpoints of other Grand Ayatollahs.

Importantly, the accurate derivation of Islamic law requires not only mastery of traditional Islamic sciences but also an accurate conception of the subject matter for which the divine law needs to be derived. On this, there sometimes exist fundamental infrastructural limitations on obtaining reliable and accurate fatawa (pl. of fatwa) on medical issues from Grand Ayatollahs. For example, the fatawa on some medical issues lack reliability owing to the incorrect/lack of communication of facts by those who submit questions on the websites of the Marajiʾ. There is also often a lack of application of secondary laws/principles (al-ahkam al-thanawiyyah), which function to abrogate primary impermissibility. An example of a secondary law would be the permissibility of examining the private parts of a patient owing to the secondary principle of avoiding hardship, thereby abrogating the primary impermissibility of looking at this part of the body owing to the necessity of treatment for a physical ailment that is causing/could cause hardship. Many other opportunities exist in the medical arena for the application of secondary principles. Furthermore, there is often an inherent neglect of the role of a given medical issue in Muslim society (involving considerations of justice, economic factors and the public good), which could in turn affect a fatwa on it were these considerations taken into account.⁴¹ Much of this unreliability may result from the unilateral process by which fatawa are sought, as well as from a lack of stakeholder consultation or multidisciplinary input. The derivative reasoning for medical fatawa is also seldom published, resulting in the inability of ethicists, lawyers or clinical academics to analyse them. Admittedly, there are also tensions within some Islamic academic circles about the influence of “bioethics” (perceived as a Western secular movement) on the traditional Islamic legal approach to contemporary medicine, perhaps hampering engagement. The issue of ADs is also not immune from the consequences of this infrastructural limitation, as demonstrated later.

Furthermore, it is important to note that, in our view, “Islamic medical ethics” is not an accurate phrase, as in reality the only normative source in Islam is Islamic law (fiqh). However, within the field of Islamic medical law, traditional legal precepts have in recent times been organised into a system resembling something like the four-principle approach of Western clinical ethics.⁴² We therefore apply and critically analyse the application of these principles to the issue of ADs in the following:

8.6.2.1 Principles that May Negate Respecting an AD to Limit Life-Sustaining interventions

• The Rule of the Preservation of Life:⁴³ Islamic law grants fundamental importance to the preservation of life, as per the Koran 5:32, numerous hadith and ʿAql (logic), which is why decisions about forgoing life-sustaining interventions are treated with caution. However, it could be argued that the current conceptualisation of life and death as a two-paradigm phenomenon results in the misapplication of this rule to dying patients. Reality is in fact closer to a three-paradigm concept involving (i) life, (ii) al-ihtiḍār (dying) and (iii) death. Al-ihtiḍār is a noun that refers to a person who is approaching death, that is, for whom the dying process has begun. Implicit within it is the recognition that death (i.e. separation of the soul from the body) is a gradual process rather than a single event. It can be appreciated from the Islamic acts of worship associated with al-ihtiḍār (such as turning the patient’s feet towards Mecca, the recommendation to recite certain verses of the Koran, the recommendation to moisten the patient’s lips and avoiding placing heavy objects on the patient’s chest) that there is an acceptance that the time of death is approaching. From such appreciation, many legal precepts such as the obligation to “save life” can be dissolved, as it can be argued that the patient is approaching (destined) death and therefore is not the intended subject of the obligation to preserve life. Of course, not all patients to whom ADs can be applied are in a state of dying, thus limiting the utility of this solution.

• The Rule of No Harm (La Darar wa La Dirar fi al-Islam):⁴⁴ Based on a widely narrated hadith, this rule can be translated broadly as “non-maleficence” to the self/others. It could be argued that accepting a patient’s AD to withhold life-sustaining interventions would (whilst having established a duty of care) makes one complicit in harming the patient by not providing treatment. It also calls into question the original validity of such an AD, as the rule could be used to limit the scope of personal autonomy to instances of self-harm. However, one could also argue the opposite, as many life-sustaining interventions such as CPR are in fact futile for terminally ill patients and constitute harm without benefit.

• The Rule of Destruction and Causation (Itlaf wa Tasbib):⁴⁵ Derived from numerous hadith, this rule creates liability for a physician who either directly harms a patient or plays a role in the causality of that harm, for example, by ordering a DNR or even respecting an AD to refuse life-sustaining intervention where a duty of care exists. However, in our view, the rule is unlikely to cause liability, as the major potential application of ADs in Iran is to futile life-sustaining interventions, where a role in causing harm is difficult to prove.

8.6.2.2 Principles that May Favour Respecting an AD to Limit Life-Sustaining Interventions⁴⁶

• The Rule of Consent (Idn): It is generally accepted among Shia jurists that consent is required for medical intervention, and that not obtaining it can incur liability. Thus, if a patient has refused certain interventions via an AD, it would be unlawful to deliver them in opposition to said directive. That said, whether such a right extends to refusing life-sustaining treatment without contradicting the Rule of No Harm remains a matter of controversy among Islamic jurists. Some scholars are of the opinion that the duty of stewardship (and of not doing harm) to oneself is an act of worship as opposed to a transaction or law, and thus does not fall under the authority of state enforcement, just as the state has no right to enforce prayer or fasting upon Muslims, as these are acts of worship between each person and God. Thus, whilst it might be considered a “sin” to refuse consent via an AD for life-sustaining treatment (due to neglecting a wajib act of worship), a physician cannot act in opposition to such refusal owing to insufficient argument to abrogate the right of consent. However, this approach is not accepted by all scholars.

• The Rule of Acquittal (al-bara’at): Derived from numerous hadith, a physician can avoid liability when a patient has agreed to the risks of intervention, provided that the physician has not been negligent in their duty. Thus, if a patient provides both consent and acquittal, they are removing liability from the physician even if harm occurs (e.g. by not conducting CPR, where that is considered the standard). However, some jurists disagree with the exculpation of a murderer by their victim before the victim’s death, which could be applied to oppose the application of the Rule of Acquittal to life-sustaining interventions via an AD.

• The Rule of Beneficence (Ihsan): Based on the Koran 9:91, this rule broadly compares to “beneficence” and could be used to remove a physician’s liability for respecting an AD to avoid life-sustaining treatment such as CPR, provided that the intention behind such avoidance is to do good to the patient and that no financial reward is involved.

• The Rule of Respecting Persons (hurmat al-nufus): This rule, based on hadith, instructs respect for persons and could be applied to remove a physician’s liability for respecting an AD to refuse undignified interventions, such as intensive care unit admission or CPR. The rule would gain particular traction if it were also proven that such interventions would be futile for the patient in question.

• The Rule of No Hardship (La Haraj): Based on the Koran 22:78, the essence of this rule is to remove/avoid intolerable hardship when a Muslim is trying to follow the Shariah, as per the standard of acceptable hardship for the common layperson. If accepting life-sustaining interventions (as per one’s perceived religious obligation to preserve their life) in a terminal illness setting would create physical hardship (e.g. owing to the side effects of chemotherapy), then one is not obliged to do so, and an AD to refuse such treatment might be considered valid, although this remains a controversial viewpoint.

• The Rule of Iztirar (Difficulty/Desperation): Similar to the previous rule, this rule, based on the Koran 2:173, negates an obligation when fulfilling it would cause severe difficulty. It could be used, for example, to validate an AD to refuse a life-sustaining intervention if the case were made that accepting the intervention would, by prolonging life, subject the patient to intolerable difficulty.

• The Rule of Public Good (Maslaha):⁴⁷ When there is sufficient ambiguity among canonical sources on an issue, an Islamic jurist can resort to the Rule of Public Good, reasoning, for example, on the basis of considerations surrounding the just allocation of limited public health resources and/or the need to avoid wastage or futile expenditure on patients with a poor prognosis. The rule could aid the acceptability of ADs to refuse futile, life-sustaining interventions from an Islamic jurisprudential perspective.

In summary, there is currently no clear or authoritative fatwa on the validity of an AD to refuse life-sustaining interventions.⁴⁸ It remains the duty of Islamic jurists to weigh up the foregoing principles against one another, while also considering other evidence from the canonical sources, to come to an accurate conclusion.

8.6.3 Social

For many, the non-binding nature of an AD on a patient’s SDM could be viewed as undermining autonomy. However, it is worth considering how this approach, in our opinion, functions relatively comfortably within the family-centric patient autonomous healthcare culture of Iran. Here, “family-centric patient autonomous” is used in opposition to “patient-centric patient autonomous”, the latter being a more representative construct for Western cultures. In our experience in Iran, the family is an integral part of a patient’s healthcare decisions, and is what most patients autonomously want/prefer, as their decisions affect not only themselves but also their family, emotionally, spiritually, financially and practically. This is not to say that healthcare professionals should put the interests of family members on par with the interests of patients when making decisions (which would contradict the Professional Ethics Guidelines); rather, it is acceptance of the fact that Iranian patients intentionally wish to consider their family’s interests and seek their active involvement in healthcare decision-making, particularly at the end of life. Therefore, respect for patient autonomy requires the inclusion of family members in the discussion. The complete exclusion of the patient at the expense of their SDM in healthcare decision-making, however, is obviously problematic. Hence, ADs can arguably play an essential role in Iran for the purpose of optimising the delivery of appropriate medical interventions at the end of life. It would be fair to say then that ADs in Iran would not function as an opportunity to defend an extreme liberal individualistic right of autonomy,⁴⁹ but rather as a way to provide appropriate, patient-centric healthcare in a culture that currently functions using a family-centric patient autonomous model. Furthermore, the current system almost always “works” by merit of the fact that the family members who could take legal action against a physician are involved in the decisions being made for the incapacitated patient. Obviously, this does not necessarily translate into the best outcomes for the patient, and it also cannot be assumed that all patients want to include their family members, as will be mirrored in our recommendations at the end of the chapter.

On a separate issue, much of the motivation for end-of-life care planning is a direct product of each individual patient’s health reflexiveness and of society’s need to plan for death. The broader inclusion of the public within healthcare discourse is also required to normalise such planning and address the anxieties associated with it.

8.6.4 Cultural

It is not uncommon in Iran for cultural beliefs to be expressed using the language of religion even when not necessarily endorsed by Islam. For example, whilst it is the case that Islamic doctrine exerts a significant influence on the beliefs of healthcare professionals,⁵⁰ relatives⁵¹ and patients⁵² about DNR orders, such beliefs are in fact cultural (non-religiously substantiated) beliefs about not intervening in divine fate⁵³ by trying to plan for/give in to what might be an end-of-life event or expectations that God will perform a miracle for end-of-life patients (shafa). Families often interpret this to mean “doing everything possible” until the patient’s heart stops, an approach that makes it difficult for both Iranian healthcare professionals and families to engage proactively in future end-of-life planning. In addition, theological beliefs about illness being a source of forgiveness for sins are sometimes misapplied, resulting in a contradiction in the case of interventions that reduce suffering (which God had destined) at the end of life for the person’s salvation. In Iranian culture, when someone suffers from illness at the end of life, it sometimes provides their families with solace, knowing that their loved one’s sins may have been forgiven and that they may enjoy a peaceful life in the grave, on the Day of Judgement and thereafter. Despite the relatively institutionalised nature of the Shia Islamic clergy in Iran, the aforementioned beliefs remain prominent in society, implying a lack of adequate intervention by the clerical establishment, despite relatives often expressing a need for help from clergymen in healthcare decisions.⁵⁴

8.6.5 Infrastructural

The current literature reveals evidence of concern regarding the association between DNR orders and reduced quality of care.⁵⁵ Given the underdevelopment of palliative care services outside the cancer arena in Iran, it may feel uncompassionate for doctors to implement DNR orders without a viable alternative treatment approach using palliative services. If one is not to resuscitate a dying patient without a clear plan for symptom control, for example, sedation, antipsychotics, anti-emetics and pain relief, then it may seem more uncompassionate to abandon the patient (at home or in hospital) without some intervention, even if futile, which reflects broader cultural issues. Furthermore, relatives may not expect maximal intervention for a patient being cared for in a hospice but may expect it while the patient is still in a hospital, where the predominant approach is to provide active treatment.

In addition, the current system of documentation in Iran is inadequate for advance end-of-life decision-making. For example, although nurses and doctors prefer a written DNR or DNR sheet/card, DNR orders often take the form of informal or verbal orders, creating operational challenges,⁵⁶ and are often not considered. The end result is often futile or “slow-code”/tokenistic resuscitation for the benefit of relatives. However, Iranian doctors and nurses generally agree that DNR orders should ideally be signed before admission.⁵⁷

8.6.6 Medical Education

It has been suggested that the culture of healthcare delivery in Iran is in some areas “stereotyped”, with physicians not encouraged to think critically and analytically about their treatment decisions, leading them to adopt a one-size-fits-all approach for their patients.⁵⁸ This situation results in a lack of thought regarding the appropriateness of resuscitation for patients with extreme frailty suffering from multiple comorbidities compared to healthier, functionally independent patients. In fact, there are currently no clinical practice guidelines that explicitly pertain to the practice of DNR orders in Iran, which prevents healthcare professionals from proactively inculcating them into their specialist training and practice.

8.6.7 Professional Considerations

The issue of defensive medical practice in Iran remains a prominent barrier to ADs, as in many countries debating appropriate end-of-life care. Therefore, considering a shift towards the avoidance of harm to patients through futile interventions may optimise the provision of more appropriate healthcare. Much of the aforementioned paradigm of defensive practice is a result of the inappropriate application of the beneficence used in living patients to the context of dying patients, whereas a greater focus on autonomy, the avoidance of harm and justice would be more appropriate for the latter patient group.

Ways of developing and strengthening the physician–patient relationship in contemporary Iranian healthcare are also needed. Patients need to feel empowered to request information on their prognoses and be able to understand that information to play their essential role in the process of shared decision-making. Similarly, Iranian physicians need to recognise that seeking greater patient involvement is in no way a demotion of their experience or insight into optimal treatment, but in fact represents an approach towards optimising the delivery of patient-centric care.

8.7 Future Directions

In summary, it can be said that according to contemporary interpretation, the law in Iran recognises “advance recommendations” as opposed to “advance directives”. The limits on personal autonomy also remain hotly debated in Islamic and legal circles. Whilst ADs have the potential to play an important role in improving end-of-life healthcare decision-making in Iran, several factors must be addressed to improve their implementation, including the following.

• A clear fatwa on the issue of ADs, including clarification of the scope of personal autonomy to refuse life-sustaining medical interventions that may be futile or otherwise: as with the majority of contemporary biomedical ethical issues in Iran, legislative/regulatory change often starts with an authoritative fatwa from a Grand Jurist, particularly the Supreme Leader, creating momentum within the governmental apparatus to address the issue as a priority. As the phenomena of precedent autonomy and ADs are new to Islamic law, an innovative approach may be required to provide an appropriate solution. Such a fatwa must also seek multidisciplinary input, be based on the best available evidence and appreciate the role of ADs in the broader healthcare system, including considerations of optimising patient outcomes and the just distribution of limited healthcare resources.

• Legal documents or official guidelines on ADs: although the charter mentions the role of ADs, more elaboration is required in the form of a focused, comprehensive law or official guidelines with legal standing ratified by the Iranian parliament or MOHME/SCME of IRIMC to provide clarity for physicians who wish to incorporate ADs into their practice and to help service providers to create the necessary infrastructure to support their implementation. Such guidelines should also include recommendations on best practice, as well as multidisciplinary team and family involvement.

• Reform of the SDM system in Iran: current practice does not reflect the law (and vice versa), including the lack of an officially appointed SDM, the impracticality of seeking a court-appointed SDM, the lack of patient participation in the appointment of SDMs and the limitation of SDM status to fathers/paternal grandfathers, where they are still alive.

• Statute legislation to clarify a physician’s liability when limiting futile life-sustaining interventions, including DNR orders, which could also incorporate articles on ADs.

• Development/empowerment of local hospital ethics committees to oversee the implementation and regulation of ADs in Iranian hospitals and community healthcare settings via clear official guidance and protocols for dispute resolution between relatives and healthcare professionals.

These recommendations constitute a set of first steps that the authors believe have the potential to stimulate legal, cultural, educational and social change in end-of-life decision-making in Iran, which, as per the foregoing discussions, is essential to improve patient outcomes while respecting the nation’s Islamic doctrine and family-centric healthcare. Without such change, ADs will remain an underutilised tool with neglected potential.

9 The Law and Practice of Advance Directives and End-of-Life Care in Malaysia

Sharon Kaur , Thomas Tan Hooi Wang , Jenny Ka Yan Yau & Richard Boon Leong Lim

9.1 Introduction

Malaysia is a multicultural and multifaith society. Although Islam is recognised¹ as the religion of the Federation of Malaysia, the country’s legal system is most accurately described as a hybrid system comprising both secular and Islamic laws. Islamic law is primarily limited to family law matters,² whereas most areas relating to the provision and regulation of healthcare are governed by secular laws. In general, there is little tension or overlap between the two legal systems. However, in a number of situations,³ the courts have had to navigate a difficult path between the two, a task made all the more difficult by social, political and religious forces. Whilst there have to date been no legally contested cases involving advance directives (ADs) or end-of-life decisions in Malaysia, it is probably only a matter of time before cases involving these issues are raised.

At present, there is no specific legal regulation that addresses ADs or care at the end of life in Malaysia. However, in 2019, the Ministry of Health (MOH) published the National Palliative Care and Care Policy and Strategy Plan 2019–30,⁴ which is meant to serve as a road map towards the achievement of good palliative care nationwide and the integration of palliative care into the national healthcare system. It has been estimated that 100,034 of the Malaysians who died in 2014 required palliative care, with that number slated to rise to approximately 230,000 by 2030.⁵ Although the policy does not address the issue of ADs specifically, strategy 2 focuses on ensuring that all people should have “their needs recognised within the healthcare system and community they live in”,⁶ forming the basis for incorporating individual interests and values into palliative care. The implementation of training in advance care planning (ACP) as part of Malaysia’s national palliative care strategy also constitutes a positive development, as advance care plans (ACPs) are commonly viewed as an important element of end-of-life care as a means of respecting the wishes of patients even once they have become incapacitated. Of course, the effective and meaningful implementation of ACPs depends on how well such plans are drawn up and the extent to which they are honoured. An important aspect of both is the development of good governance mechanisms. With respect to ADs in particular, both the Malaysian Medical Council (MMC) and MOH have published guidance documents in recent years.

Given the lack of formal legal recognition of ADs and ACPs and moves to embed the latter into palliative care practice in Malaysia, it is worth considering how the law potentially applies in situations in which particular decisions need to be made at the end of life and when the individual in question no longer has the capacity to decide.

This chapter considers the role of ADs in Malaysia, beginning with a discussion of the legal principles that are likely to apply in the end-of-life decision-making context. Section 9.2 then examines the professional guidance that has thus far been issued on ADs and highlights points of concern that such guidance has failed to address. Section 9.3 turns to consideration of the limited empirical data on AD awareness in Malaysia, followed by a discussion in Section 9.4 of the various sociocultural factors that may influence the acceptance of ADs, with a particular focus on the significant roles played by the family and physicians. Religion as a key influence is also explored in relation to Malaysian attitudes towards ADs.

9.1.1 Relevant Legal Principles in End-of-Life Decision-Making

Malaysia’s legal system is made up of the Federal Constitution, or the “supreme law” of Malaysia,⁷ acts enacted by Parliament and case law. In some circumstances, English common law and equity principles may also apply. More specifically, the Civil Law Act of 1956 provides that common law principles may apply in cases “as the Circumstances of the States permit”, with attention paid to the necessity of applying such principles in “local circumstances”.⁸ It is important to note, however, that the Civil Law Act stipulates that common law developments after 7 April 1956 cannot be considered by the Malaysian courts.⁹ The language used in the Civil Law Act also indicates that “common law” refers to principles developed and followed in common law cases, not to common law statutes.¹⁰ Thus, the only way in which such principles can be directly incorporated into Malaysian law and applied by the courts is for Parliament to enact laws that take into account common law developments subsequent to the aforementioned cut-off date.¹¹ However, the courts have allowed for the consideration of current common law principles in certain cases as being of persuasive authority, which suggests that Malaysian judges have the discretion to apply the common law principles of other Commonwealth jurisdictions to local cases if deemed necessary, even if said principles were developed after 1956.

Given that there are currently no statutes or regulations in Malaysia that specifically address the issue of ADs, it is possible that common law principles, particularly those on advance refusals and the right to refuse treatment more generally,¹² may be applied in cases concerning ADs.

In cases in which there is no evidence of advance decision-making, there is also no specific law in Malaysia that deals with the issues of incapacity and surrogate health decision-making. The only statute that makes some provision for surrogate decision-making is the Mental Health Act 2001 (MHA). The main purpose of the MHA is to provide for the compulsory detention and treatment of mentally ill persons who are deemed to pose a risk to others or to themselves.¹³ Accordingly, in situations involving surrogate healthcare decisions, the Act is limited in its application¹⁴ and is usually considered a blunt instrument that does not engage with the challenges of trying to meet the needs of incapacitated individuals in a meaningful way.

Two additional points are worthy of note. The first is that individuals are not permitted to choose their own health proxies under the MHA because surrogate decision-makers are prescribed under section 77 of the Act and the courts are responsible for appointing a committee of the person under section 58.¹⁵ Whilst the mental health context admittedly differs from the end-of-life decision-making context, the inability to choose one’s own health proxy is in direct opposition to the philosophy of the AD, wherein individuals are afforded the freedom to choose healthcare proxies who are likely to share their values and interests.

The second point is that there is no oversight of surrogate decision-making under the MHA, and it appears that surrogates have unfettered discretion in making decisions on behalf of incapacitated individuals. There is nothing in the MHA that requires either the relatives or physicians of persons declared incompetent to make any sort of inquiry regarding those persons’ interests. The only protection afforded a mentally disordered person is found in section 86,¹⁶ which renders it an offence to ill-treat or wilfully neglect a patient. The section fails to recognise that it is possible to make a decision against the interests of a person, that is, to fail to respect his or her wishes and interests without being considered to have ill-treated or wilfully neglected him or her. The ethos of the MHA thus again appears to run contrary to the underlying tenets of ADs and ACP more generally, that is, to allow individuals to take control of decisions that affect their care and to promote patient autonomy.

9.2 Advance Directives: Professional Guidance

Although ADs are not subject to legal regulation in Malaysia, and whether common law principles apply remains unclear, there are professional guidelines in the country that touch upon ADs. This section discusses the professional guidance issued by the MMC and MOH.

9.2.1 Guidance from the Malaysian Medical Council

The MMC is constituted under the Medical Act 1971 as the regulator of physicians in Malaysia, and therefore has disciplinary jurisdiction over all registered physicians in the country.¹⁷ Whilst guidelines issued by the MMC are not legally binding, a physician who fails to comply with them may be subject to the council’s disciplinary jurisdiction.¹⁸ The Medical Act provides the MMC with wide disciplinary powers that range from reprimanding practitioners to striking their names off the Malaysian Medical Register.¹⁹ The MMC may also refuse to renew physicians’ annual practising certificates.²⁰ Two of the guidance documents issued by the MMC touch upon ADs: (i) the Guidelines on Consent for Treatment of Patients by Registered Medical Practitioners 2017²¹ and (ii) the Code of Professional Conduct 2019.²²

9.2.1.1 Guidelines on Consent for Treatment of Patients by Registered Medical Practitioners (2017)

Clause 18 of the 2017 Guidelines states that doctors “should refrain from providing treatment or performing any procedure where there is an unequivocal written directive by the patient that such treatment or procedure is not to be provided in the circumstances which now apply to the patient (Advance Care Directive)”.²³ However, the clause does not apply when the directive contains instructions for such illegal activities as euthanasia or the termination of a pregnancy. In addition, medical practitioners are advised to consider the following:

1. (i) Whether the directive is sufficiently clear and specific to the circumstances that have arisen;

2. (ii) Whether the directive was made in contemplation of the current situation; and

3. (iii) Whether there is any reason to doubt the patient’s competence or voluntariness at the time of making the directive (in terms of being subject to undue pressure).²⁴

Clause 18 also goes on to provide the following:

In an emergency, the medical practitioner can treat the patient in accordance with his or her professional judgment of the patient’s best interests, until legal advice can be obtained on the validity or ambit of any Advance Care Directive that may have been given by the patient. Where there are concerns about the validity or ambit of an Advance Care Directive in a non-emergency situation, the medical practitioner should consult the patient’s spouse or next of kin or legal guardian and the medical practitioner should also consider the need to seek legal advice and to discuss the issue with his or her Colleagues, or other clinicians involved in the patient’s care. Such discussions should be documented in the patient’s medical case notes.²⁵

9.2.1.2 Code of Professional Conduct 2019

Clause 1.14 of the 2019 Code of Professional Conduct states that a practitioner may be confronted with a living will (or advance medical directive (AMD)²⁶), which is a written statement detailing a person’s desires regarding future medical treatment in circumstances in which he or she is no longer able to express informed consent.²⁷ Such circumstances may be imminent death, terminal illness or severe and irreversible conditions.²⁸ Any decision made by the practitioner to comply or not comply with the AMD must be made in consultation with the patient’s relatives and next-of-kin.²⁹

9.2.2 Guidance from the Ministry of Health

9.2.2.1 Guidelines for Resuscitation Training for Ministry of Health, National Committee on Resuscitation Training 2016 (NCORT Guidelines)

Part 6.4 of the NCORT Guidelines³⁰ contains a discussion on the ethics of resuscitation and end-of-life issues. Notably, in relation to resuscitation, the NCORT Guidelines recognise that there has been a shift in emphasis from a doctor-centred (beneficence) approach to a patient-centred (autonomy) approach.³¹ Furthermore, they place the onus on healthcare providers to “equip themselves with sound knowledge in resuscitation and ethical issues pertaining to it in making end of life decisions”.³²

Paragraph 6.4.2, entitled “Advanced directives”, specifically addresses the issue of ADs, stating that “Advanced medical plan and directives when made, should be clearly documented and visible in [the] patient’s notes for other healthcare personnel to recognize on the spot. However, over time the situation or perspectives of [the] patient might change and do not attempt resuscitation (DNAR) orders should be revised accordingly. Exemption from DNAR should also be clearly specified”.³³

9.2.3 Discussion

The fact that the foregoing professional guidance exists despite the lack of a clear legal framework for ADs in Malaysia suggests that there is acknowledgment that ADs are being practised on the ground and that practice guidelines need to reflect that reality, as well as offer guidance on how healthcare professionals should deal with ADs even if the law does not do so. Thus, whilst the guidance documents discussed here are not legally binding, they can arguably play an important role in establishing the professional requirements of health professionals in practical settings even if those requirements are not underpinned by a formal regulatory framework. It is worthy of note, however, that none of the guidelines require healthcare professionals to take a proactive approach in encouraging patients to make an AD, or supporting them in doing so, as part of their responsibility to fulfil quality end-of-life care requirements. Instead, the guidelines appear to be entirely reactive, focusing only on what healthcare professionals should do if they encounter an AD in their practice.³⁴

Of the three guidance documents, the 2017 Guidelines provide the most detail on what medical practitioners should do when provided with an AD. They highlight several important factors that medical practitioners should consider, namely, clarity, applicability and whether there was voluntary consent, although there are no definitions of the terms “competence”, “voluntariness” or “undue pressure”.³⁵ The absence of such definitions is likely to render the operationalisation of the guidelines more difficult given the lack of guidance on how the aforementioned factors should be properly assessed. The need for clarity is emphasised by the requirement that any AD be “unequivocal”,³⁶ although no such requirement is explicitly stated in the 2019 Code of Conduct. Both that document and the 2017 Guidelines indicate that doctors should implement an AD only when it is in a written format,³⁷ and the NCORT Guidelines suggest that ADs should be clearly documented in patients’ medical records.

Both the 2017 Guidelines and the 2019 Code of Conduct also emphasise the importance of family involvement when it comes to the acceptance and implementation of a patient’s AD. The former requires that a medical practitioner “consult the patient’s spouse or next of kin” in a non-emergency situation, and the latter requires that the decision to implement an AD be made in consultation with the patient’s family.^{38, 39} Whilst these requirements reflect the family-oriented approach in medical decision-making that is still very much followed in Malaysia, as further discussed in Section 9.4 of this chapter, none of the guidelines make reference to persons who may be nominated by patients as their healthcare proxies. Individuals who are estranged from their families or who are in same-sex partnerships (which are not legally permitted in Malaysia) may prefer not to have their relatives involved in decisions about their care, which renders the requirement to consult family members problematic.

It is also notable that although the 2017 Guidelines ask medical practitioners to respect unequivocal written directives provided by patients, practitioners are also given a wide scope of discretion in the case of an emergency to treat the patient as they see fit until they can obtain legal advice on any directive in place.⁴⁰ Given the lack of clear legal rules on ADs, it is unclear how the validity of an AD could be demonstrated, although it is conceivable that common law principles on advance refusals would be relied upon in legal advice. More importantly, whilst obtaining legal advice may be feasible in non-emergency cases, permitting medical practitioners to treat patients as they see fit until such advice can be obtained in emergency cases in effect allows them to override what may be the unequivocal, written wishes of the patient. Tan further argues that a patient’s wishes may be disregarded not only in emergency cases but also in non-emergency cases given that the wording of clause 18 states that medical practitioners “should” refrain from providing treatment contrary to an AD,⁴¹ which suggests some flexibility in the requirement. The same can also be said of the 2019 Code of Conduct. The last line of clause 1.14, which states that “any decision by the practitioner, to comply with or not to comply with the AMD, must be made in consultation with relatives and next-of-kin of the patient”,⁴² suggests that medical practitioners have the flexibility not to comply with the explicit wishes of a patient, as written in his or her AD, as long as that decision is made in consultation with family members.

Tan additionally points out that, contrary to usual practice, the 2017 Guidelines unrealistically assume that the physician treating the patient will be aware of the existence of his or her AD and that the content thereof will be available to the physician at the relevant time, including during an emergency.⁴³ Furthermore, the 2017 Guidelines do not consider care in non-hospital settings, such as care homes or hospice facilities, which is problematic given that both the number of elderly people and the number of care homes are increasing in Malaysia.⁴⁴

Thus, whilst the professional guidelines discussed previously provide some level of guidance for medical practitioners who may encounter ADs in their practice, there remain a number of concerns that need to be addressed. In particular, the phrasing of the guidelines suggests that the explicit wishes of the patient, even if clearly documented in a written format, are not necessarily given priority. Hence, the views of the physician, in consultation with family members, are still likely to take precedence, which is contrary to the principle of respect for patient autonomy.

9.3 The Practice of Advance Directives in Malaysia

There are no official statistics on the number of ADs in Malaysia, and there is a lack of empirical data on AD implementation in the country. However, a number of studies have demonstrated a very low level of awareness of ADs amongst the elderly. For example, a study conducted in 2007 by Htut et al. involving 15 elderly patients representing different ethnic and religious groups in Malaysia discovered that none of the respondents had heard of ADs or ACPs, although most agreed after discussion that plans for future medical management were something they should consider, with 5 expressing eagerness to make an AD for themselves.⁴⁵ Ten years later, a similar study carried out with a larger pool of respondents reported that only 8 out of 70 had heard of ADs, with none having drawn one up.⁴⁶ In this 2017 study, 70 per cent of the respondents (49 out of 70) said that they were open to the concept of using ADs.⁴⁷

A recent study on end-of-life care in nursing homes found that none of the respondents had any ideas about or had discussed their end-of-life preferences with anyone.⁴⁸ After being afforded an opportunity to discuss their end-of-life plans and the AD concept for the first time with the researcher, nine respondents expressed positive feelings about the experience and reported being motivated to initiate such a discussion with family members.⁴⁹

Although empirical data remain limited, the data from these studies suggest that Malaysians previously unfamiliar with the concept of ADs may still be open to their use once informed of them. Additionally, although the studies sampled only a small pool of elderly individuals, they suggest a continuing lack of awareness in Malaysia about the existence of ADs and how they might be implemented. Knowledge deficiency concerning the purpose and use of ADs in Malaysia appears to constitute a very strong barrier, one that needs to be overcome if they are to be encouraged. This lack of knowledge and awareness is further discussed in Section 9.4 in the context of the physician’s advisory role in ADs.

Taken together, the preliminary data presented in this section suggest that if more Malaysians were made aware of the AD concept and the use of ADs was encouraged to a greater extent, by the medical community for example, then a greater number of Malaysians would be likely to make ADs. Nevertheless, there are a number of factors related to Malaysia’s sociocultural context that may exert an adverse impact on AD acceptance in the country. These factors are explored in Section 9.4.

9.4 Sociocultural Factors Influencing the Acceptance of Advance Directives in Malaysia

9.4.1 Influence of Family Members in Decision-Making

Much that has been written on the regulation and use of ADs in Malaysia highlights the key role that the family plays in medical decision-making. Malek et al. describe the family as an important aspect of a patient’s attitudes towards making an AD, similarly to other Asian countries with a family-centred culture.⁵⁰ The concept of ADs is based on the principle of patient autonomy, a type of autonomy that is considered to still be in a “nascent stage” in Malaysia given the prioritisation of family-based, collective decision-making and deference to physician expertise.⁵¹ According to Malek et al., the idea of patient autonomy “seems to clash with local practice” because most patients are heavily influenced by their families and doctors,⁵² especially in situations involving end-of-life care. Patient autonomy is usually considered in conjunction with family-centred decision-making and professional medical expertise in this context.

The aforementioned studies conducted on ADs in Malaysia also support the claim that the family plays a significant role in the context of medical decision-making. For example, the majority of participants in the 2007 study by Htut et al. had nominated family members as their surrogate decision-makers, and even those participants who expressed an interest in ADs indicated that they would discuss the matter with their families.⁵³ A 2016 study on ACP conducted by Lai et al. found 87 per cent of participants preferred a “family-based decision-making process” pertaining to end-of-life care.⁵⁴ The authors argued that such a preference was likely the result of Malaysia’s collectivist society, which “reverses the role of the individual” and “places more importance [on] family” for decisions, indicating that the opinions of family are far more influential for most patients than their own wishes.⁵⁵

The aforementioned 2020 study on end-of-life care in nursing homes echoes this argument, with its authors stating: “Malaysia is very much a collectivist society. As such, most decisions related to elderly nursing home residents are influenced by the residents’ family and friends”.⁵⁶

Whilst this emphasis on a family-oriented decision-making model may seem problematic for the acceptance and implementation of ADs, which tend to be conceived of as an individual expression of preference, that does not appear to be straightforwardly the case for at least two reasons. The first is that there are cases in which individuals wish to make an AD precisely because of their strong family ties, as demonstrated in the 2007 study conducted by Htut et al.,⁵⁷ wherein some respondents indicated that their interest in pursuing an AD stemmed from a desire not to be a burden on their families. The second reason is that even when a family-based decision-making approach is adopted, that approach does not automatically exclude ADs. For example, in the 2017 Koh et al. study,⁵⁸ only 6 of the 70 participants stated that they opposed ADs because they preferred to leave medical decision-making to their families. Furthermore, 26.5 per cent of the participants stated that they preferred to have a family member act as a power of attorney to execute their ADs,⁵⁹ suggesting that the family may still have a role to play even if an individual wishes to make an AD and, further, that in a sociocultural context that emphasises the role of the family, the two can in fact be complementary.

Thus, whilst it is clear that the family plays a significant role in the context of end-of-life decision-making, the ways in which that role affects an individual’s desire to make an AD may differ. On the one hand, those who wish their family members to make decisions on their behalf may be less likely to consider it necessary to make an AD. On the other, data suggest that others may not perceive a family role in decision-making to exclude the making of an AD, with some even likely to view family members as having a role in the making thereof.

9.4.2 The Role of Physicians

9.4.2.1 Important Advisory Role

Medical professionals play an important advisory role in the process of end-of-care decision-making in Malaysia because discussions about end-of-life decisions often involve complex medical issues on which medical professionals are considered best placed to provide advice. Additionally, some evidence suggests that patients prefer to have such discussions with their treating physicians. In their 2007 study, Htut et al. found that when respondents were asked who they should discuss ACP with, the majority cited their attending doctors. Interestingly, they preferred hospital-based specialists to regular general practitioners. They expressed confidence in hospital specialists because “they know me better”, “they have more experience” and “they are more appropriate to discuss this [issue] with”.⁶⁰

The key advisory role played by physicians can have an adverse effect on the acceptance and implementation of ADs in two ways. The first relates to whether physicians provide information on and encourage their patients to make ADs as part of their advisory role. Limited data from the 2016 Lai et al. study suggest that they do not. Lai et al. found that 89 per cent of their respondents who were against ACP stated that they had not been given enough information to make an informed choice and that that lack of information had influenced their objections.⁶¹ The respondents also stated that if doctors were to provide sufficient information to patients regarding ACP, that would facilitate their acceptance of both ACP and ADs.⁶² This finding is supported by the aforementioned fact that the professional guidelines issued by the MMC and MOH do not in fact require or even encourage physicians to initiate conversations about ADs or ACP more generally.

The second way in which physicians’ key advisory role could potentially have an adverse effect is that individuals may prefer to rely on their treating physicians for medical decision-making rather than make their own ADs. There are limited empirical data supporting this possibility: in the 2020 study on end-of-life care in nursing homes, over half of the 13 respondents indicated that they would prefer to let their doctors handle decision-making for them and communicate with their families regarding end-of-life care.⁶³

9.4.2.2 Public Interest versus Private Interests and the Important Role of Experts in the Islamic Context

It would appear that the key role of the physician is even more significant in the context of Islam, which can be attributed to the Islamic emphasis on the public interest rather than the interests of individuals. Salleh argues that physicians who possess the requisite training and are charged with saving lives may be deemed to be in a better position than the patient to ascertain the right choice, which he explains as follows:

Generally, Muslim scholars view that there is a limit to [a] patient’s autonomy in choosing the forms of medical treatment and care, as [a] doctor’s professional advice should also be considered. This is because choices made to satisfy personal interests and satisfaction are contrary to Islamic values. The emphasis in Islam is more on public interest compared to personal interest. Furthermore, Islam puts the emphasis on doctor[s’] efforts in saving lives. However, Islam also recognises the limitation of human endeavour, and as such all efforts must be followed by tawakkal. Having said that, doctors should exhaust all possible avenues in order to save a patient’s life.⁶⁴

In the specific context of ADs, Malek argues in a similar vein:

In general terms, Islam does not disapprove [of] the application of AMD[s] [advance medical directives] in end-of-life decision-making. However, the application of [an] AMD may have certain limitations that must be addressed… Besides that, respecting autonomy via AMD[s] should not diminish the physician’s role in decision-making as an expert in the medical field. Many Islamic views stress the necessity of taking the judgment of experts into account. Before any medical procedure is executed, it must undergo thorough medical evaluation and [the] judgment of experts. Therefore, patients must consult doctors before they can carry out their right to self-determination.⁶⁵

Thus, whilst Malek is supportive of the right to autonomy and self-determination, he argues that patient autonomy should be “contextualised” according to Islamic values.⁶⁶ This contextualisation includes the prioritisation of the physician’s views, as physicians are generally regarded as the “decision-making authority for patient care” in Malaysian society.⁶⁷ Malek further suggests that such deference to physicians confirms the influence of medical paternalism in healthcare decisions within the context of Islam.⁶⁸ Physicians must use their experience to judge whether a patient’s choice “would bring more harm than good”,⁶⁹ demonstrating that they have the authority to override any decisions made by their patients in order to follow Islamic principles. According to this reasoning, physicians should have the final say as to whether a patient’s choice is implemented even when the patient has made an AD.

9.4.3 The Role of Religion

In addition to the significance of Islam in providing a context for the prioritisation of medical expertise, studies also indicate that religion is an important factor that comes into play when individuals are deciding whether or not to make an AD. The 2007 study of Htut et al., for example, reported that “the majority of respondents believed that their views on ADs were influenced by their religion”, especially those of Islamic faith.⁷⁰ Most of them thought that it was best to leave matters pertaining to end-of-life care to either God or fate. Similarly, in their 2016 study, Lai et al. also identified fate and religion as two of the main justifications against ACP for participants who disapproved of it, with the majority of participants choosing fate and religion as reasons for not making an AD.⁷¹

Not all of the reported data are consistent. For example, in the 2017 study conducted by Koh et al., only 7.4 per cent of respondents (5 out of 70) said they would leave the decision-making process up to God or fate,⁷² whereas 3 of the 13 respondents in the 2020 study on end-of-life care in nursing homes cited religion as playing the most important role in end-of-life care.⁷³ This evidence does not necessarily contradict the significance of religion, although it does suggest that even when religion is a factor that is taken into account, or a perspective through which many view the end-of-life process, it may not necessarily have an adverse effect on the use and acceptance of ADs.

9.5 Conclusion

ADs and end-of-life planning are not specifically regulated in Malaysia. This lack of regulation and what appears to be a low prevalence of ADs are influenced by many factors, including low levels of public awareness of ADs, dependence on family and physicians to make end-of-life decisions collectively (or in some cases on patients’ behalf) and religious factors. Studies show, however, that patients are willing to consider ADs once they have been informed of them, suggesting that higher levels of awareness may lead to more people using ADs. The National Palliative Care and Care Policy and Strategy Plan 2019–30 has established a well-designed road map for embedding ACP services in hospitals and the community by training palliative care professionals and creating greater awareness within the profession and society, which is the first step towards recognising the value of ADs and ACP more generally in Malaysia. Well thought out governance mechanisms and legal regulations should also be put in place to ensure that the rights of patients are preserved, and patient autonomy is promoted.

10 Advance Directives in the Philippines: In Search of a Legal Framework

Leonardo D. de Castro , Renato B. Manaloto & Alexander Atrio L. Lopez

10.1 Introduction

The Philippines is a country located in Southeast Asia with a land area of around 300,000 square kilometres distributed across more than 7,000 islands in the western Pacific Ocean. Its population of 110 million is the second largest in the region and the 13th largest in the world. The country’s archipelagic layout partly accounts for the inequitable distribution of healthcare resources across the population and for the concentration of large populations in under-resourced centres.

Many situations have arisen in the Philippines that suggest a possible role for advance directives (ADs) or similar instruments in that they give healthcare professionals and relatives the confidence to withdraw or withhold life-saving interventions from incompetent patients. The mounting cost of healthcare for people with chronic diseases and conditions associated with advancing age puts pressure on the resources that can be allocated for the care of all people in general. At the individual level, increasing healthcare expenses put pressure on ailing persons and their families to reconsider their “treat-at-any-cost” stance and explore ways of coping that are consistent with autonomous decision-making in anticipation of the point at which a person has lost mental competence.

Nevertheless, previous attempts to pass AD legislation have met with little success in the Philippines owing to religious and sociocultural influences. Given the practical need for ADs, as discussed previously, and highlighted by the pressures of the ongoing COVID-19 pandemic, hospitals have stepped in with their own institutional guidelines.

This chapter begins with an exploration of the religious and sociocultural factors that may account for the limited success of AD legislation in the Philippines. It then considers the specific context in which the country does have such legislation, namely, psychiatric ADs, and the difficulties that legislation faces. Lastly, the chapter examines the ways in which healthcare professionals have adopted alternative ways to offer greater legal certainty, such as the creation of specific guidelines at the institutional level, to avoid the pitfalls created by the gaps in AD legislation.

10.2 Religious and Sociocultural Influences

Religion and culture exert significant influences on the conception and practice of ADs in the Philippines. The country has long been known for its status as the only predominantly Christian country in Asia, and Christian values are enshrined in the Constitution of the Republic of the Philippines, the basic law of the land.¹ In addition to Christianity, Filipinos are also strongly influenced by cultural attitudes in relation to disease causation and family. The influence of religion and culture on ADs in the Philippines can be seen in two ways: through the Filipino understanding of what Christian values mean for ADs and what Filipinos’ cultural attitudes towards disease, such as bahala na (what will be will be), and family mean for the end-of-life context.

The Christian faith frequently exerts an impact on legal developments in the Philippines, with the heated debates surrounding legal proposals often resulting in the upholding of Christian (often specifically Catholic) values to the point of violating human rights or disregarding essential human interests. Whilst there have been no significant public debates over ADs in the country, and there is a lack of high-quality empirical research on attitudes towards ADs or on how they are practised on the ground, there appears to be a general lack of sympathy for a legal framework for ADs. This lack of sympathy is likely due to ADs being seen – rightly or wrongly – as a rejection of the Christian commitment to upholding the value of a life that God has given and that only God can therefore take away.

With regard to cultural attitudes, the key theme in the characterisation of Filipino psychology concerning diseases and their causation has been the idea that people do not find it necessary – or useful – to prepare documents indicating their future treatment preferences because uncertainty generally does not worry them. It has been posited that Filipinos attribute unexpected negative or positive events in their lives to the grace of God, as doing so enables families to cope with challenges and accept their life experiences.² As well as being a coping mechanism, such an attitude also brings hope to families. It allows Filipinos to feel able to surrender their problems to a higher being who is all knowing and almighty, and exercises sovereign will, thus rendering ADs redundant for situations in which a patient is mentally incompetent. Rather than manifesting weakness on the part of the patient, readiness to offer his or her predicament to God allows the patient to experience a level of personal empowerment that reflects spirituality and is not incompatible with the concept of self-determination.

The phenomenon can also be explained in terms of the Filipino attitude of bahala na, which involves resignation to whatever may happen without any active participation in making it happen.³ A person does not have to document treatment preferences for future contingencies through an AD because there is nothing to fear about a situation to which one is resigned. Recognising that human skills are not sufficient to overcome difficulties, the Filipino patient seeks the intercession of a higher being and resolves to accept whatever happens.

Many academics see the situation as a historical given, something that is especially highlighted, for example, by Filipino migrants in a country like the United States, where they have “built ‘bonds’ and ‘bridges’ with religious, civic, governmental, business and social institutions by means of… (1) transnational influence, (2) adaptive spirit, and (3) intergenerational cohesion…as they Filipinize elements of the cultural, political and economic arenas within the San Francisco Bay Area … in which they have settled … Because of the prevalence of religious practices in everyday life, daily discourse, verbal and written, is also influenced by religion”.⁴ The expression bahala na captures something essential about the cultural values that influence the way in which Filipino Catholics perceive and interact with society.⁵ In addition to helping to explain the importance of religiosity and spirituality in the way that many Filipinos approach decisions about health and healing,⁶ the expression also helps us to understand why it is often difficult to convince a Filipino patient of the utility of ADs.

An example of such difficulty can be found in studies of Filipinos who have migrated to other countries, as the multicultural context allows observations of cultural differences. In a study of Filipino American patients in the United States, for instance, it was reported that “Filipino Americans who believe that the future is in God’s hands may refuse to sign advance directives, even though they may recognise the need for hospice support. That is because signing advance directives would take the decision out of God’s hands and would not be acceptable in their belief system”.⁷

In addition to disease causation, Filipino cultural attitudes towards the role of the family are also relevant, as can be observed in the way that Filipinos prefer palliative care to be administered. Some academics have observed that “when the patient’s condition becomes terminal, the home is usually the preferred place of care [and] … many Filipinos take a passive role when they become ill and expect the family to care for them”.⁸ In fact, decision-making tends to fall upon the eldest male in the family as a matter of responsibility,⁹ and it may even be considered irresponsible for the family to allow a vulnerable patient to make acute treatment decisions even when he or she still has decisional capacity. Self-care is generally frowned upon for being contrary to the best interests of the patient.

Thus, we can see that there are pervasive religious and cultural traits that are incompatible with Western notions of individual patient autonomy. In Filipino society, families decide as a unit on matters of healthcare, with the eldest male taking the key responsibility, rather than leaving such decision-making to the individual alone. In addition, decision-making takes place within a context characterised by acceptance of an unforeseen fate (bahala na), and people choose to surrender their future to God’s will when faced with difficult healthcare decisions. Reliance on these traits provides an explanation for the historically minimal discourse on ADs in the Philippines. Whilst the absence of a specific legal framework for ADs may be seen by the broader healthcare community as a deviation from the ideal scenario wherein individual patients’ rights are protected, what is being manifested is in fact partiality towards an approach that is family rather than individual oriented and that is informed by religious and cultural sensitivities.

In the next section, we turn to an examination of laws that may be relevant to this discussion, with a brief consideration of ADs in the psychiatric context, which, unlike end-of-life ADs, have been legislated in the Philippines.

10.3 Philippine Legislation on Advance Directives

10.3.1 Advance Directives at the End of Life

Since the current constitution was ratified in 1987, numerous attempts to pass end-of-life AD legislation in both houses of the Philippine Congress have ended up in the archives. In a highly positivistic legal system like that of the Philippines, if there is no explicit law on end-of-life ADs (whether in the form of a statute, case law/jurisprudence or executive issuance), no such law can be considered to exist.¹⁰ However, in situations in which an end-of-life AD is said to exist and needs to be ruled upon, the courts may invoke the following in their decision-making.

1. 1. Cases in foreign legal jurisdictions (particularly those in the United States because of the Philippines’ colonial history)

2. 2. Philippine medical societies’ codes of ethics

3. 3. International documents to which the Philippines is explicitly or implicitly a signatory

Owing to the influence of the US legal system (its common-law tradition in particular) on the history and development of the Philippine legal system, US court decisions have a persuasive (as opposed to mandatory or binding) effect on legal decisions in the Philippines. In the absence of the country’s own court decisions in cases involving ADs, the Philippine courts may borrow US court decisions in interpreting or applying a provision, especially an unclear one.

Whilst the lack of legislative success with end-of-life ADs paints a murky picture concerning whether such instruments are effective, there are certain situations in which an end-of-life AD may be able to apply. In order for an end-of-life AD to be effective, there will likely need to be a finding of medical futility, as determined by a healthcare professional. However, two further conditions likely also need to be confirmed before an end-of-life AD can become operative: (1) the patient lacks decisional capacity and (2) the patient is unlikely to regain such capacity in the near future (i.e. the loss of decisional capacity is associated with the patient’s underlying medical condition and will persist along with it).

10.3.2 Advance Directives in the Psychiatric Context

The closest the Philippines has come to legislative success in relation to ADs is a number of provisions in the National Mental Health Act (NMHA) 2018 (Republic Act No. 11036),¹¹ which defines ADs and the general conditions under which they may be expressed and implemented. The NMHA was signed into law on 20 June 2018 and took effect on 5 July 2020 after publication of its Implementing Rules and Regulations (IRR). In the chapter on treatment and consent, Section 9 makes specific reference to psychiatric ADs, stating: “A service user may set out his or her preference in relation to treatment through a signed, dated, and notarised advance directive executed for the purpose. An advance directive may be revoked by a new advance directive or by a notarised revocation”.¹² The same wording is found in the IRR, where a psychiatric AD is held to be important for establishing the service user’s or patient’s consent, legal representative and supporters.¹³

With regard to consent, a psychiatric AD is important for documenting the authentic preferences of the patient. In Chapter III, Section 9 of the NMHA, it is indicated that the patient’s expressed consent in an AD will also guide the healthcare team on what treatment options can be applied to the patient when he or she suffers a temporary impairment of decision-making capacity, such as in a neurologic or psychiatric emergency.

With regard to legal representatives, Chapter I, Section 4 states that a representative of legal age may be appointed by a patient in his or her AD. Some of the functions of a legal representative specified in Chapter III, Section 11 are to be consulted on the patient’s therapy, to assist the patient in various capacities and to act on the patient’s behalf, especially when decision-making is impaired. If the patient fails to appoint a legal representative, the following people shall act as one in the specified order: spouse, children of legal age, parent, a medical director of the mental healthcare facility or someone appointed by the courts.

Finally, with respect to supporters, the patient can appoint up to three people in addition to his or her legal representative, as stipulated in chapter III, section 12 of the NMHA. Supporters may access the patient’s medical information, consult the patient regarding treatment and be present during the patient’s medical appointments. Appointing supporters can be seen as a way of keeping family members involved in the AD process.

Despite the aforementioned provisions in the NMHA, there is little clarity on how the psychiatric AD regime operates in practice. In a way, what has happened in the Philippines is a case of putting the cart before the horse: the NMHA¹⁴ mentions ADs without the benefit of prior legislation specifically defining and describing the procedures for ADs. For this reason, many challenges can arise from disagreements in interpretations of when ADs are due for implementation after a patient loses mental competence. We explore some of these challenges next.

In situations in which patients appoint (in their written psychiatric AD) someone other than their next-of-kin as their legal representative, the NMHA may come into conflict with next-of-kin laws. Under the Philippine next-of-kin regime, the relative nearest in degree is usually the next of kin, with more distant relatives excluded. The Supreme Court of the Philippines describes this determination of the next of kin in the absence of a spouse as “[F]irst descends, then ascends, and finally, spreads sideways. Thus, the law first calls the descendants, then the ascendants and, finally, the collaterals, always preferring those closer in degree to those of remoter degrees”.¹⁵

The next of kin may decide on the patient’s behalf in any kind of case, psychiatric or not. By not observing the Philippine next-of kin laws, the decision-making granted by a patient to a legal representative who is not his or her next of kin may be held invalid. Accordingly, the legal representative and anyone else who implements the AD may be sued criminally (for physical injuries, assistance of suicide, homicide or murder) or civilly (torts and damages).

In the event that no next-of-kin is appointed, the appointment of a legal representative may still be questioned because of next-of-kin laws,¹⁶ even in psychiatric cases, and the court will, after a trial, appoint a guardian for the patient. In all cases, regardless of whether any next of kin is appointed and who holds the decision-making power, the court has the power to veto choices made by physicians, parents, legal representatives, agents or guardians. The absence of pertinent jurisprudence regarding whether and how legal representatives trump next of kin in ADs makes it unclear whether the provisions in the IRR allow the appointment of legal representatives to make decisions on patients’ behalf.¹⁷

Despite the potential legal complications, health practitioners and institutions have formulated legal instruments and procedures in the hope of providing themselves with legal protection while offering guidance to all, including patients and their families. Such a hope led to the formulation of guidelines relating to ADs by various Filipino hospitals, as well as guidance points pertinent to emergency healthcare practice during the current pandemic, both of which will be explored in the following section.

10.4 Advance Directives in Hospital Practice

Many hospitals in the Philippines have formulated their own guidelines for allowing, documenting and implementing patient preferences as part of a broader advance care planning process in scenarios that would ideally require ADs owing to patients’ loss of decision-making abilities. Although these guidelines are not explicitly supported by AD legislation, they are considered part of good professional practice and are taught to medical practitioners and students who work or rotate in clinical settings. There is also long-standing government recognition of professional self-regulation, and the medical community has codified its respect for a patient’s right to refuse medical treatment in advance. Professional guidelines are also consistent with the contention that whatever their legal status may be, “advance directives are ethically valuable because they give a voice to patients at a time when their decision-making capacity has been lost” and that “such a voice is essential”¹⁸ in the face of a proliferation of medical technologies that can prolong the process of dying almost indefinitely.

Because the practice of ADs has taken place in the absence of a clear legal framework, it is understood that the instruments are being used without the stakeholders being legally protected from any controversies or liabilities that may arise.¹⁹ However, the guidelines could still have the effect of giving patients and their families confidence in the decision-making process, thereby forestalling legal suits. Thus, they continue to be offered routinely to patients. In the next part, we explore some of the AD guidelines and instruments implemented by various Filipino hospitals.

It is important to note briefly here that the concept of an AD is predicated on the idea that a patient has the right to refuse medical treatment or have it withdrawn by the doctor. Although that right is generally recognised, some hospitals impose conditions and limitations. For example, some imply that the right to refuse treatment is possessed by competent individuals alone,²⁰ and some explicitly stipulate that the refusal of treatment is permitted only to the extent allowed by law.²¹ Such a stipulation is obviously problematic because, as already highlighted in this chapter, existing laws fail to provide a sufficient legal framework. Further, even when legal provisions are in place, there appears to be room for conflict, for example, in relation to next-of-kin laws.

10.4.1 Types of Advance Directive

Taking their cue from their foreign counterparts, including those in the United States, many hospitals in the Philippines explicitly mention “advance directives”, “advanced medical directives”, “advance care”, “living wills” and/or “do-not-resuscitate” (DNR) orders in promoting the services they make available to patients.²² For example, The Medical City,²³ a well-known private hospital in the Philippines, provides a detailed discussion on its website, defining an AD as a “written document (form) that tells what a person wants or doesn’t want if he/she in the future can’t make his/her wishes known about medical treatment”.²⁴ The hospital further describes an AD as detailing what a patient’s wishes are depending on his or her condition in the future, for example, in the event that he or she is in an unconscious state, a coma or a state that is likely to be terminal.

Hospitals recognise ADs of different kinds: (1) a living will, (2) declaration to withdraw or withhold treatment and (3) a DNR order.

10.4.1.1 Living Will and Declaration to Withdraw or Withhold Treatment

A living will details a patient’s preferred treatments in the case of a serious or terminal illness.²⁵ The patient’s stated wishes may include such details as “comfort measures only”, “Do not transfer to ICU” or “Do not give IV antibiotics”.²⁶ A living will does not allow a patient to appoint someone to make decisions on his or her behalf; such appointment is instead enabled by a “special power of attorney for healthcare”.²⁷ A “declaration to withdraw or withhold treatment” is a type of AD mentioned by the Makati Medical Center on its website.²⁸ Such a declaration is useful in cases where a patient suffers from an incurable condition and life-sustaining treatments would only prolong dying. It seems to be similar to a living will.

The fact that different hospitals offer different types of documents to patients reflects the absence of AD legislation, as well as the expectation that, by giving patients and their families a sense that their decisions are being respected, legal controversies can be minimised. Patients and their families are generally expected to make use of whatever documents are on offer at the institution in question.

10.4.1.2 Do-Not-Resuscitate Order

In addition to a living will and declaration to withdraw or withhold treatment, a DNR order can be implemented in the context of a specific AD. Unlike DNR or do not administer cardiopulmonary resuscitation (DNACPR) orders, which are typically instigated by healthcare professionals on the grounds of futility, a DNR order in this context indicates that the patient does not want CPR if his or her heart or breathing stops.²⁹ Further, as part of an AD, a DNR order is decided by the patient while competent or by his or her next-of-kin in the event of incompetence.

A cancer-related statement issued by the Tumour Board of Ospital ng Maynila Medical Center Hospital gives doctors four criteria to help them decide when to advise terminally ill cancer patients and/or their guardians to make a DNR order: (1) when there is a high probability of the patient going into cardiopulmonary arrest because of cancer, (2) when the patient is in a vegetative state, (3) when the treatment burdens outweigh the benefits and (4) when the patient and/or guardian wants a DNR order.³⁰ Such an order is important because in the absence of one, healthcare professionals will continue to administer life-saving treatment.³¹ A DNR order instructs healthcare providers not to perform CPR but to continue other treatments.³² The cessation of other treatments can be specified via a declaration to withdraw or withhold treatment. In the next section, we explore some of the instructions relating to ADs that are typically given by various hospitals to their patients.

10.4.2 Instructions Regarding Advance Directives

This section presents a synthesis of the kinds of instructions on ADs that various hospitals give to their patients.³³ To make an AD, a patient may simply write down his or her preferences, use a doctor-provided form or consult a lawyer.³⁴ Aside from consulting a lawyer, a patient may also want to talk to his or her doctor, loved ones, caregivers and spiritual advisers.³⁵ The inclusion of spiritual advisers in the preceding list attests to the importance of religious beliefs in the experience of disease discussed earlier. Doctors usually advise patients to talk to religious authorities to obtain advice and comfort.

Instructions are given that an AD should be made when a patient is still competent to anticipate what decisions ought to be made if he or she loses mental competence.³⁶ Understandably, the absence of a formal legal framework, even within the NMHA, for determining when decisional capacity has been lost makes it absolutely necessary for the healthcare team to explain how it will be assessed to avoid legal controversy should the family become dissatisfied with certain aspects of the treatment given to the patient.

A DNR order can also be mentioned by a patient to his or her doctor, upon which the doctor writes the order in the patient’s medical records.³⁷ A DNR can also be written on a piece of paper, kept as a card in a wallet or worn as medical jewellery such as a necklace or bracelet.³⁸

Patients and their families are also told that any changes made to an AD should ideally be signed and notarised.³⁹ Notarisation provides legal documentation that the AD has been issued upon the patient’s authority. Otherwise, the attending physician or family members should be informed of the changes early on.⁴⁰

Patients are told to bring all of their AD documents with them to every hospital admission, with copies provided to all members of the healthcare team.⁴¹ Some hospitals also tell patients to bring their ADs with them if they want them to be applied during a particular admission.⁴² There are also hospitals that stipulate that it is patients’ responsibility or obligation to bring their ADs or notify their doctor that they have one.⁴³ More specifically, notifying healthcare personnel of an AD is part of a patient’s responsibility to provide complete and accurate information on his or her health status.⁴⁴ Details of an AD are usually verified by the healthcare team by checking with the patient’s family, a practice that is very much in line with the emphasis on family in the sociocultural context of the Philippines.

Healthcare professionals are instructed to carefully explain to patients how immensely useful an AD can be. Owing to the lack of AD discourse in Filipino culture, such a careful explanation is a necessary step in healthcare delivery. For example, patients are told that preparing an AD can reduce the stress on their family members and doctors in future healthcare decision-making.⁴⁵ It is interesting to note that the detailed instructions provided by various hospitals regarding ADs do not appear to align well with the aforementioned bahala na philosophy. One potential reason for this lack of alignment is that hospitals see a practical need for such instructions, perhaps to shield themselves from potential liability, a need that is driving education and awareness of ADs despite the absence of a formal legal regime for ADs and the concept being contrary to bahala na.

10.4.3 The COVID-19 Context

The onset of the pandemic provided an opportunity for stakeholders such as healthcare professionals, ethicists, social scientists, policymakers and administrators to underscore the importance of ADs in anticipation of situations requiring quick decision-making by healthcare professionals when patients lack competence and their relatives are not readily accessible. In the knowledge that the triage mechanisms in hospitals need to take patients’ autonomous choices into consideration and that relatives were barred from hospitals, internists took the initiative to propose guidelines that were then vetted by other stakeholders committed to promoting ethical decision-making in the face of the existing challenges.

The resulting document, known as the Ethics Guidelines on COVID-19,⁴⁶ consists of 30 guidelines, including 4 that address situations that could require the use of ADs. The participants in the consultation recognised that healthcare professionals would soon be swamped with emergency cases for which they needed to be armed with documentary evidence of patients’ preferred treatment options.

Guideline 2 recognises “the rights of patients to autonomy, transparency, privacy, and confidentiality of personal information” and provides that ADs should be considered upon admission.⁴⁷ Consistent with such recognition, Guideline 6 urges that “advance care planning should be initiated at the earliest appropriate time and preferably even before hospital admission … and that the patient … [be] encouraged to accomplish an Advance Directive”.⁴⁸ The Ethics Guidelines also provide an AD template that is sufficiently specific to offer patients a reasonable indication of possible treatment scenarios and enable specific decisions to be made regarding such options.

The Ethics Guidelines also include a template for a substitute decision-maker form for use in cases where the patient lacks the competence to accomplish the equivalent form, which implies that an AD is not meant to address disagreements between patients and their families but rather those between patients (and families) and healthcare providers. The guidelines relating to ADs pertain to situations in which timely communication between patients and their families is impossible because relatives are not allowed to join patients in confinement and treatment or medication has to be given very quickly by a healthcare team that may have no opportunity to obtain consent from a patient who lacks mental alertness or competence. Accordingly, decision-makers have to be guided by what they consider to be medically useful or futile while also hoping that ADs will offer them some protection in the event of legal proceedings.⁴⁹ In the remote likelihood of legal proceedings (which are rare in the Philippines), healthcare decision-makers can look forward to being protected by acting on the basis of what is professionally determined to be medically useful or medically futile without having to depend on the existence of ADs.⁵⁰ This is probably true even with the preponderance of various legal forms in use in medical institutions.

10.5 Conclusion

Although various Filipino hospitals have developed their own guidelines relating to ADs, professional self-regulation is no substitute for a legal framework providing reliable guidance for patient rights claims and professional accountability. In the absence of a clear legal framework that defines the exact parameters for what can be regarded as acceptable documents, ADs are open to inaccurate interpretation and inconsistent application. Legislating a proper framework for ADs would provide consistency in interpretation and, more importantly, greater confidence in the accuracy of the message that incompetent patients are trying to convey to medical professionals and to their families. A legal framework acquires moral significance not simply because it exists and serves as a reliable document in the event of disputes but also because, once it has been sufficiently publicised, people can be presumed to understand that when they write an AD, they know that it will be interpreted in light of the ground rules laid out in the legal framework. The NMHA has signalled to healthcare stakeholders that a legal framework for ADs could serve a useful purpose. In addition to filling a gap in mental healthcare practice, the Act also sends the clear message that legal documents are incomplete without the specific guidance that a legal framework can provide. Moreover, it also provides a legal precedent against which ADs of various kinds in non-mental health contexts can be judged by courts of law in the future. These significant effects of legislation are all the more needed in light of the discussion provided in this chapter regarding the cultural stances to which Filipinos default in healthcare decision-making. The presence of legislation could prompt Filipinos to consider alternative or complementary ways of thinking about such decision-making by themselves or their families.

After all, the importance of the kind of decision-making advocated by ADs is already evident in the way in which hospitals have devised their own ways of justifying and encouraging the use of ADs. In addition to the guidelines of various hospitals, the COVID-19-inspired AD and substitute decision-maker templates constitute initial steps towards formalising and disseminating the use of ADs. However, the Philippines needs to push through with legislation if the full benefits of ADs are to be realised by healthcare professionals and patients alike.

11 Advance Directives and the Turkey Context

Yesim Isil Ulman

*

11.1 Introduction

Caring for a patient who is at the end of life should ethically be in accordance with human rights and dignity based on the value of life, in the concept’s secular sense, meaning that life is a basic good that possesses intrinsic value ranging from the right to life to the avoidance of overly burdensome and futile medical interventions to achieve a death with dignity. It encompasses caring for others with due respect paid to their own choices and preferences on the basis of human rights and dignity.

One way of respecting patient preferences is via an advance directive (AD), the main underlying ethical principle of which is respect for patient autonomy. Such respect is honoured by executing the AD when the person concerned has the capacity to make informed decisions and give consent. Respect for patient autonomy requires that patients have an opportunity to make their own moral choices and achieve their own wishes and preferences. Doing so is a universal and even existential component of being human in compliance with the concept of human dignity, regardless of geographical borders, cultural factors and sociological differences. Such an approach supports the process of advance care planning as a way to improve end-of-life care when decisions are taken openly and straightforwardly in a pluralistic manner with the support of family and relatives, and the role of ADs is to ethically implement and legally document the process.

In the end-of-life context, respect for human dignity, whereby all human beings possess equal and inherent worth, and therefore ought to be accorded the highest level of respect and care,¹ entails paying particular attention to the decision‑making process regarding medical treatment at the end of life as a high-quality procedure, especially for particularly vulnerable patients. Respecting people’s views on how they would like to be treated should be considered in terms of the value of life and dying in dignity, both of which extend beyond national borders and cultural features. Palliative care and high-quality end-of-life care are also important components when considering an ethical and legal framework for legislating ADs.

11.1.1 The End-of-Life Context in Turkey

Turkey’s life expectancy at birth is comparable to global figures. Whilst the country’s birth rate and newborn mortality rate have declined, the elderly proportion of the total population rose by 21.9 per cent over the 2014–19 period.² As life expectancy for the elderly has lengthened in Turkey, health problems have changed, and there is greater demand for long-term care and control. According to public health specialist Reyhan Uçku, mortality and morbidity rates have increased in line with global statistics on such non-communicable diseases as cardiovascular diseases, cancer, respiratory diseases and Alzheimer’s disease, which has resulted in a rising need for end-of-life care. She has, as a result, called attention to the deficiencies in healthcare delivery for the elderly and end-of-life care in Turkey.³

Turkey’s low ranking in the Quality of Death Index, 47th amongst 80 countries worldwide according to an Economic Intelligence Unit report, is quite alarming, raising questions about the quality of end-of-life care in the country.⁴ Whilst a government-led strategy is in place for the development and promotion of national palliative care, the strategy’s milestones are loosely defined, with no targets specified, and the mechanisms for achieving them are also limited. Furthermore, the degree of correlation between Turkey’s overall Quality of Death score and per capita healthcare expenditure is also rather low. It is stated in the aforementioned report that Turkey falls into the category of government subsidies or programmes being available for individuals requiring access to palliative care services, but the qualification criteria are unclear, and subsidy funds and programmes are limited and/or difficult to access. Moreover, Turkey has a shortage of specialised palliative care professionals, and accreditation for specialist palliative care training is not the norm.⁵

Although end-of-life care is available in Turkey in both the private and public sectors, in accordance with a 2014 regulation, Uçku comments that such care services are far from prevalent, are often poorly organised and are not coordinated or integrated with other components of the healthcare system. There are also shortcomings in capacity. The number of trained, competent healthcare staff is far from sufficient, and health coverage in the field is also insufficient. There is a need for efficient policies that are responsive to needs on the ground.⁶ The Ministry of Health has initiated a 2013–23 target plan to increase palliative care capacity by establishing new centres and hospices in Turkey. Medical experts, however, are of the view that palliative care coverage should be expanded. They also recommend that a system whereby certain types of healthcare expenses can be refunded should be realistically implemented and that multidisciplinary healthcare staff, including psychologists, social workers, physiotherapists, spiritual support personnel and volunteers, should be put in place to meet the needs of patients and improve their access to end-of-life care.⁷

In addition to the need for improved end-of-life care, there have also been calls for the development of AD legislation amongst academics and professionals as part of a growing emphasis on patient preferences.⁸ Such legislation is a particularly important issue for Turkey, given its ratification of the Council of Europe’s Convention on Human Rights and Biomedicine (“Oviedo Convention”), as discussed later. This chapter considers ADs in the Turkish context, beginning with a consideration of the possible legal bases for such directives in Turkey. It then explores the relevant professional guidance from medical associations, as well as empirical data relating to the level of awareness of ADs amongst patients and healthcare professionals. The sociocultural factors that pose potential obstacles to the introduction and implementation of ADs in Turkey are also discussed, and the chapter concludes with some thoughts about the way forward.

11.2 The Legal Framework

Although Turkey does not have any specific laws dealing with ADs, there are several sources of law that are relevant in considering this issue, as well as end-of-life decision-making more generally.

11.2.1 Oviedo Convention

The first source is the Oviedo Convention. International treaties are one of the sources of written law in Turkey; once such treaties have been adopted by the Grand National Assembly of Turkey, they have the force of law and are hierarchically above national laws.⁹ The Oviedo Convention was ratified by Turkey on 4 April 1997, adopted in 2003 and entered into force in 2004 with the name Insan Haklari ve Biyotıp Sozlesmesi (Convention on Human Rights and Biomedicine).

The Oviedo Convention provides an ideal framework for the ethical and legal aspects of treating patients with dignity and preserving human rights. With regard to persons lacking capacity, the convention clearly states in Article 9 that “previously expressed wishes relating to a medical intervention by a patient who is not, at the time of the intervention, in a state to express his or her wishes shall be taken into account”.¹⁰

The Guide on the Decision-making Process Regarding Medical Treatment in End-of-life Situations issued in 2014¹¹ by the Council of Europe elaborates on the formal legal arrangements for previously expressed wishes, including as one of the options ADs, or “written documents drawn up by a person having legal capacity (who has attained majority and is able to express a free and informed wish) containing provisions relating to medical treatment in the event that he or she is no longer capable of taking part in the decision‐making process”.¹² It further states that written ADs are the most direct means of reflecting patients’ wishes and, as long as requirements to ensure validity and accessibility are fulfilled, they should take precedence over all other non-medical opinions expressed in the decision-making process.¹³ The guide, however, leaves it up to ratifying states to decide whether to give legal binding force to previously expressed wishes.¹⁴

Although the Oviedo Convention is considered a part of Turkey’s internal law, and although its first provision requires signatories to make their domestic law compatible with the convention by making any necessary amendments, Turkey has not yet fulfilled this requirement in full.¹⁵ This is particularly true in relation to Article 9. There remains a lack of legislation on or formal legal regulation of ADs in Turkey, which means that the legal efficacy, content and limits of such documents remain uncertain.¹⁶ Moreover, the Council of Europe’s aforementioned guide, which has been translated into Turkish and widely adopted within Turkey, has not been formalised into legal governance requirements concerning how end-of-life care ought to be provided or what role ADs have.

11.2.2 Additional Legal Frameworks

Whilst there is no local legislation that deals directly with the subject matter of ADs, there are a number of local laws that sit alongside the Oviedo Convention in Turkish domestic law and that could potentially be interpreted to provide an additional legal basis for ADs.

The first is the 1982 Constitution. Section 2, Article 17 on Personal Inviolability and Material and Moral Existence of the Person states the following.

Everyone is entitled to right to life, to protect and develop her/his material and moral existence. Personal integrity is inviolable unless there exists any medical necessity and legally binding situation stated by law; no one can be subject to scientific or medical trials without her/his consent. No one can be subject to torture or degrading treatment that is incommensurable with human dignity.

Although not specifically addressing the topic of end-of-life care, the constitutional principles of human rights and dignity contained within this section of the Constitution could provide a foundation for the introduction of ADs.

The second local law is the Civil Code, which some jurists have suggested could potentially be amended to cover ADs in accordance with the Oviedo Convention and Turkish Constitution. For example, Cetinel proposes that Article 23 of the Civil Code, which “protects the personal rights of the individual and states that such rights are indefeasible”,¹⁷ could be amended to cover ADs.¹⁸ It has also been suggested, however, that Article 23 might pose difficulties for the refusal of life-saving treatment, which could be seen as a waiver of the rights to life and bodily integrity.¹⁹

The third local law possibility can be found in the Patient Rights Regulation, which came into effect in 1998. This regulation was issued by the Ministry of Health in light of international covenants, the Turkish Constitution, and other legal documents and legislation with the purpose of allowing patients to exercise rights in healthcare settings in accordance with human dignity and of protecting patients from violations of their fundamental rights.^{20, 21} The Patient Rights Regulation states that a patient’s previously expressed wishes should be taken into consideration during any medical intervention and, if the patient’s capacity is lost intermittently, that his or her informed consent should be obtained prior to the intervention at a time when he or she is conscious and sane (Article 24). A patient also has the right to reject or withdraw a treatment that is planned or being carried out for him or her except in legally binding situations or when negative consequences may arise from such rejection/withdrawal (Article 25).

Although the aforementioned articles currently provide only for the requirement to obtain informed consent prior to medical interventions, not to prepare ADs with patients,²² the Patient Rights Regulation is the only document that explicitly refers to the right to refuse treatment.²³ Accordingly, it has been argued that Article 24 provides an appropriate basis for AD legislation in Turkish law.²⁴ It should be noted, however, that the language of Article 24 contains significant limitations on the exercise of the right to refuse treatment:²⁵ (i) in cases where treatment has already begun, consent can be withdrawn only if there are no “medical drawbacks” of doing so and (ii) consent cannot be withdrawn in “emergency situations threatening the life or one of the vital organs [of the patient]”.²⁶ It thus appears doubtful that these articles could serve as the basis for ADs without significant amendments. Unfortunately, owing to the low normative status of the Patient Rights Regulation in Turkish law, as a document issued by the Ministry of Health rather than Parliament, provisions contained in higher status laws, including the Constitution and Civil Code, would need to be clarified before the regulation could be amended in any meaningful way.²⁷ In a similar vein, Irmak elaborates on the refusal of treatment in light of medical paternalism and proposes reforms in the legal documents defining and regulating patient rights in Turkey to strengthen such rights in relation to patient autonomy.²⁸

11.3 Professional Guidance

Given the lack of a specific legislative framework regulating ADs, the professional guidance issued by various professional organisations should also be considered. In addition to the Council of Europe’s guidance discussed previously, several Turkish professional organisations have also issued guidance in relation to the end of life.

In 2016, the Turkish Society of Medical and Surgical Intensive Care issued a guidance document entitled “Problems and Possible Solutions Faced by Terminally Ill Intensive Care Patients: Views from the Turkish Society of Medical and Surgical Intensive Care”,²⁹ which affirms the importance of a patient’s right to make medically informed, autonomous decisions, as well as the importance of a patient’s right to refuse futile treatment. In the document, the society specifically calls attention to the role of ADs in actualising patients’ wishes and in respecting patients’ self-determination, as expressed in advance with decision-making capacity concerning the withholding or withdrawal of treatment in the circumstances of worsened quality of life at the end of life with a prolonged dying process. Interestingly, the society expresses cultural reservations about euthanasia and physician-assisted suicide, but advises that improved palliative care services and pain control be provided and fostered by psychological and social support via a multidisciplinary approach. Dying with dignity in a peaceful and compassionate way surrounded by loved ones is stated in the document to be the right of everyone at a terminal stage.³⁰

The Turkish Society of Intensive Care has taken a similar stance. In its “Opinions and Suggestions of the Turkish Society of Intensive Care on Healthcare during the End-of-Life Period”,³¹ also issued in 2016, it calls for public engagement to be conducted through multilateral dialogue amongst social actors, professional expertise bodies, the Turkish Medical Association, university law faculties and policymakers to enlighten the Turkish people on medical, legal and ethical issues in order to remove the cultural factors that may hinder the acceptance of refusals of futile treatment.³²

Most recently, and perhaps most importantly, the “Declaration on End-of-Life Decisions” issued by the Turkish Medical Association in 2020 contains two sections that appear relevant to ADs.³³ The first states that, where life support is envisaged, the patient’s primary physician should seek the patient’s opinion on life support and suggest that the patient express his or her will in advance in situations wherein he or she may lose decision-making ability.³⁴ Whilst this provision refers to the prior expression of wishes, it is similar to Article 24 of the Patient Rights Regulation and may thus be seen as focusing primarily on the obtaining of informed consent ahead of time in cases in which the patient may lose capacity. It does, however, encapsulate to some extent the normative ethical value of prioritising patient choices in such cases. More importantly, in the second relevant section, which appears under the heading “Living Will”, the association provides a clear definition for what appears to be the equivalent of an AD:

A living will is the patient’s verbal, written, and sometimes even witnessing statement about what he wants or does not want to be done, at any stage of the treatment of his chronic disease, after he loses his decision-making ability. These decisions are mostly about terminating treatment that will not provide any benefit to the patient, asking for “Do-Not-Resuscitate” [DNR] when he is unable to regain lost functions, or not continuing life support treatments or artificial nutrition.³⁵

This definition demonstrates that the association is supportive of the promotion of an individual’s decision-making and self-determination capacity to determine his or her preferences as to whether treatment should be withheld or withdrawn, particularly in the form of an AD. The declaration concludes with an affirmation of the right of every person to die with dignity. These guidelines have been drafted on the basis of systematic, well-planned, multilateral discussions amongst experts in human sciences, medicine, biosciences, law and social sciences.³⁶ What is needed at this stage to take steps to implement these principles in practice is the engagement of policymakers.

11.4 The Sociocultural Context of Advance Directives in Practice

Despite the clear endorsement of ADs in professional guidance, available empirical data suggest that there is a relatively low level of awareness of ADs amongst both patients and healthcare professionals. In Koşar et al.’s study of 300 patients in outpatient clinics, 70 per cent of patients were found to be unaware of ADs prior to the survey.³⁷ Tekpınar and Uludağ’s study of 372 healthcare professionals found that more than half (53.8 per cent) had inadequate knowledge of ADs.³⁸

Interestingly, however, these studies also found that, upon understanding what ADs are, the majority of participants were in favour of the concept, reflecting the outcomes of similar empirical studies conducted in the United States and China.³⁹ Of the 300 patients in Koşar et al.’s study, 78 per cent agreed that ADs were useful and necessary.⁴⁰ Of the healthcare professionals in Baykara et al.’s study, 77.9 per cent stated that ADs should be clearly legislated, whilst 70.3 per cent supported consideration of the previously expressed wishes of incapacitated patients during a medical intervention, and 52.9 per cent agreed that patients who had signed DNRs should not have their decisions interfered with.⁴¹ These findings suggest that raising the awareness of the population in relation to ADs is likely to have a positive impact on the use of ADs in practice if they are legislated or otherwise formally introduced and, prior to that being accomplished, on the likelihood that end-of-life wishes will be clearly expressed by patients.

There are, however, certain sociocultural factors that may affect the implementation of ADs in practice. Most prominently, paternalism appears to be a core feature of the Turkish healthcare context. In their comparative analysis of differing approaches to ADs in Europe, Andorno et al. noted that despite Turkey’s ratification of the Oviedo Convention, the use of ADs in the country was practically non-existent in medical practice owing to the strong paternalism that dominates the doctor–patient relationship⁴² and that this “culture of paternalism” is in direct contradiction of the Oviedo Convention.⁴³ Sert and Guven provide further support for this claim, arguing in particular that paternalistic interventions, as well as paternalistic interpretations of provisions that deal with emergency situations, which do not require informed consent, in cases where there is a wish to refuse treatment are often the norm owing to the lack of clear definitions and guidelines on whether patients have a right to refuse treatment.⁴⁴

There are also empirical data that support the claim. In their study of 207 physicians presented with case studies involving the fundamental principles of bioethics, Ersoy and Gündoğmuş found that 83.6 per cent of the participating physicians would try to save the life of a patient who had indicated prior to losing consciousness that he or she did not want to live with the aid of artificial respiration; only 13 per cent said they would respect the wishes, living will or previous consent of the patient.⁴⁵ On the basis of these results, the authors concluded that the participants in their study had a low degree of sensitivity to ADs.

This paternalism is manifested not only in approaches towards medical intervention, but also in the choice of whom to communicate with in relation to end-of-life measures. Sert and Guven argue that discussing death with patients at the end of life still appears to be taboo amongst healthcare professionals in Turkey, who often choose to discuss such issues with the family instead of the patient.⁴⁶ Sert and Guven’s claim here is that professionals aim to shield patients who are close to death from the difficulties associated with making decisions about their care for their own good, turning to the family as a protective mechanism to relieve patients of any distress resulting from conversations about their care at the end of life. Whilst this behaviour can be seen as in line with the importance of family in Turkey, where familism and collectivism continue to be the leading values, as demonstrated by cross-national value surveys,⁴⁷ and where the family is frequently involved in medical decision-making,⁴⁸ Guven and Sert argue that simply attributing it to the role of the family in the Turkish social structure “fail[s] to acknowledge the effect of the authority and influence of the paternalist healthcare professional”.⁴⁹ Thus, professionals’ motivation to rely on the family for decision-making in this context is paternalistic rather than grounded in a commitment to patients’ meaningful relationships with family members or in the family’s status as a decision-making authority independently of a specific patient. Setting the reasons for this behaviour aside, removing the patient from discussions about end-of-life care can result in a patient’s desire to refuse life-sustaining treatment being overlooked or disregarded, particularly as anecdotal evidence suggests that families are likely to demand heroic measures in such situations.⁵⁰

11.5 The Way Forward

Whilst paternalism remains a key feature of healthcare professionals in Turkey, it has been argued within Turkey that there should be a move towards a more patient autonomy-centred approach, an argument that reflects the broad consensus in Anglo-American bioethical discourse. Accordingly, the concept of patient rights has become more popular following the issuance of the Patient Rights Regulation by the Ministry of Health.⁵¹

As the evolution of professional guidance over the past few years demonstrates, there is also considerable support for ADs and the valuing of patients’ wishes at the end of life from the disciplines of medicine, law and ethics, as well as from medical specialty societies and medical associations. From the viewpoint of family physicians, for example, Kahveci argues that considering patient involvement in the decision-making process and respecting patients’ wishes would render healthcare delivery more democratic.⁵² Guven and Sert, as discussed previously, have criticised paternalistic practices in the healthcare setting and emphasised the need for coordinated efforts to achieve legislation on ADs and living wills.⁵³

In their paper on the ethical approach to end-of-life preferences and decisions, Akpinar and Ersoy argue that fulfilling a patient’s previously expressed wishes is an ethical responsibility for healthcare professionals and that it is thus ethically permissible and appropriate for a physician to withdraw or withhold life-sustaining interventions owing to such wishes if they are formulated in a living will.⁵⁴ İmamoğlu draws particular attention to the function and effectiveness of living wills and ADs and proposes that they should be expressly regulated by law in order to guide patients, relatives and healthcare professionals in the provision of high-quality end-of-life care to terminally ill patients.⁵⁵ Finally, Kalkan and Mirici, two intensive care clinicians, remark in their survey of DNR decisions that the principle of patient autonomy should encompass respect for a patient’s previously expressed wishes, namely, in the form of living wills, and that such respect should be promoted to a greater extent to both doctors and patients. They call for consensus to be reached amongst medical, ethical and legal disciplines on the evaluation of living wills in terms of patient autonomy.⁵⁶ Importantly, this approach to justifying and developing a more robust AD regime in Turkey, one built on respect for human dignity and personal autonomy, would also bring Turkey more closely into alignment with other countries.

In practical terms, internationally ratified and legally binding conventions offer an appropriate infrastructure for Turkey in terms of reforming end-of-life decision-making, as well as the inclusion of ADs in legislation on the basis of human rights and dignity. They are an important and necessary starting point for further legislative developments and the formalisation of a legally ratified regime for ADs in end-of-life care. What is also urgently needed is for policymakers to take responsible steps forward to represent the public’s views on how the international consensus surrounding end-of-life care and decision-making processes should be tailored to the contemporary norms of Turkish society. However, it is also important to gather the collaborative efforts of medicine, ethics, philosophy, sociology and law in evaluating ADs and designing legislation specific to them. Promoting ethical consultation would be highly valuable to enhancing the end-of-life decision-making process in clinical practice and to addressing some of the paternalistic practices documented previously. Training healthcare professionals in both the concept of ADs and the discussion of end-of-life preferences with patients is also crucial.⁵⁷

In order to develop a legally robust and practically applicable approach to ADs, legislators and professionals in Turkey need to address concerns about how ADs have been put into practice elsewhere. Such concerns include worries about the stability of patient preferences over time, necessitating an ongoing review of any directive made and ensuring an ongoing conversation between the patient and doctor to ascertain any changes that may need to be captured in a revised statement timed in an appropriate manner.⁵⁸ As Lo and Steinbrook have argued, it will also be important going forward to not see ADs simply as the fulfilment of a legal process, where the emphasis is on documentation and process. Instead, ADs should be embedded in good clinical practice, where communication between doctor and patient creates a space for a meaningful exchange about the patient’s values, perhaps as part of a broader care-planning process, and within which a discussion about the appropriateness of an AD takes place.⁵⁹ Finally, as Brock argues, it is vital that concerns relating to the proper assessment of a patient’s competence and his or her full understanding of relevant treatments, consequences and alternatives prior to the AD being made are properly addressed.⁶⁰

There is also a need for in-depth studies exploring social and cultural factors to promote public engagement and public participation led by academe, civil society actors, specialty societies and professional associations. Such studies are likely to aid the development of more patient-centred healthcare provision while simultaneously clarifying the role of family members in the enactment of an AD and in shaping their loved one’s end-of-life care more broadly. They might also function to challenge, and subsequently diminish, paternalism and to trigger a public conversation leading to improvements in patient-physician interactions on the basis of trust in balance with patient autonomy and beneficence. This pluralistic way forward, focusing on open dialogue, can ensure that new laws and practices are supported in ways that are feasible, pragmatic and underpinned by a fundamental respect for the values of human dignity and personal autonomy.