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.Footnote ¹ Hong Kong also has the highest average life expectancy in the world.Footnote 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.Footnote 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,Footnote 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.

7.3 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,Footnote ²³ which for the most part track the guidance issued by the Hospital Authority, are as follows:

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.Footnote 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.Footnote 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 CFootnote ³¹, 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 BlandFootnote ³². 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.Footnote ^33, Footnote 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,Footnote 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:Footnote ³⁶

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.Footnote 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.Footnote ³⁸

While the general lack of awareness about ADs may be readily explainable by inadequate promotion and education,Footnote 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.Footnote 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,Footnote 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.Footnote 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.Footnote ⁴³ As Fan and Li have argued, families are autonomous entities that are themselves the source of legitimating authority.Footnote 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.Footnote 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.Footnote 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.Footnote 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.Footnote 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.

8.1 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.Footnote 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.Footnote 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,Footnote 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).Footnote 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,Footnote 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-.Footnote 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.Footnote 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.Footnote 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.Footnote 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.Footnote 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.Footnote 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.Footnote 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)Footnote 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:

8.5 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,Footnote 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.Footnote 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).Footnote 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.Footnote 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,Footnote ¹⁹ with the majority of doctors,Footnote ²⁰ nurses,Footnote ²¹ relativesFootnote ²² and even patients supporting the practice.Footnote ²³ The common reasons offered for such support include protecting the dignity of the patient,Footnote ²⁴ reducing futile interventions,Footnote ²⁵ economic costs and pain/suffering,Footnote ²⁶ and relatives sacrificing their own use of health resources for others.Footnote ²⁷ Most of the participants in these studies agreed that DNR decisions should be led by physiciansFootnote ²⁸ with the consent of the patient/relativesFootnote ²⁹ 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),Footnote ³⁰ a stance mirrored in one hospital’s palliative care guidelines.Footnote 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”.Footnote 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.Footnote 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.Footnote ³⁴ Such poor communication may be related to the difficulties perceived by healthcare professionals of discussing dying/DNRs with patients/relatives,Footnote ³⁵ as well as their expected role in prolonging lifeFootnote ³⁶ and even providing hope to patients despite their imminent death.Footnote 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?

8.7 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.

9.1 Introduction

Malaysia is a multicultural and multifaith society. Although Islam is recognisedFootnote ¹ 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,Footnote 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,Footnote 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,Footnote 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.Footnote 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”,Footnote 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.

9.2 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.

9.3 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.Footnote 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.Footnote 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.Footnote 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.Footnote 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.Footnote 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

9.5 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.

10.1 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.Footnote 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.Footnote 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.Footnote 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”.Footnote 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.Footnote 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,Footnote 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”.Footnote 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”.Footnote ⁸ In fact, decision-making tends to fall upon the eldest male in the family as a matter of responsibility,Footnote 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

10.4 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”Footnote 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.Footnote 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,Footnote ²⁰ and some explicitly stipulate that the refusal of treatment is permitted only to the extent allowed by law.Footnote 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.

10.5 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.

11.1 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,Footnote 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.

11.2 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.

11.3 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”,Footnote 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.Footnote 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”,Footnote 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.Footnote 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.Footnote 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.Footnote 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:

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.Footnote 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.Footnote ³⁷ Tekpınar and Uludağ’s study of 372 healthcare professionals found that more than half (53.8 per cent) had inadequate knowledge of ADs.Footnote 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.Footnote ³⁹ Of the 300 patients in Koşar et al.’s study, 78 per cent agreed that ADs were useful and necessary.Footnote 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.Footnote 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 relationshipFootnote ⁴² and that this “culture of paternalism” is in direct contradiction of the Oviedo Convention.Footnote 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.Footnote 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.Footnote 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.Footnote 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,Footnote ⁴⁷ and where the family is frequently involved in medical decision-making,Footnote 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”.Footnote 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.Footnote 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.Footnote 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.Footnote 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.Footnote 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.Footnote 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.Footnote 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.Footnote 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.Footnote 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.Footnote 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.Footnote 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.Footnote 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.