2.2.1 The Advance Medical Directive

The first advance directive introduced into Singapore law is the AMD, so named to make clear that it pertained only to medical decisions.Footnote ¹ The impetus for enabling legislation was the need to address difficult ethical and legal issues related to the use and withdrawal of new medical technology that eventually proved futile in preventing death. Affording a patient the ability to indicate her treatment preferences in advance would better guide her physicians in making difficult medical decisions, especially in the face of differences of opinion amongst family members. It was also recognised then that various other jurisdictions facing the very same issues had introduced and legalised advance directives to allow patients the means to be spared futile medical treatment that only prolonged the dying process, and avoid placing such decisional burdens on their families.Footnote ²

At that time, the Singapore courts had not yet addressed the legality and operation of advance directives as a matter of common law. Waiting for a sufficient body of precedents to build up to provide sufficient legal guidance was unpredictable and would take too long. Furthermore, the reception of common law precedents from other jurisdictions may not adequately take into consideration the principles and beliefs of the local community. The NMEC therefore recommended that legislation be introduced to remedy this deficit in the legal framework pertaining to advance medical decisions.Footnote ³

2.2.2 The Common Law Advance Decision

Although Singapore has adopted the model of the United Kingdom’s Mental Capacity Act 2005 as its framework for handling the care and treatment of mentally incapacitated adults, it chose to omit sections 24 to 26 of that Act which deal generally with advance decisions to refuse specified treatment, which may relate to all medical treatment including the provision of artificial nutrition and hydration.Footnote ³⁰ The drafter of the MCA 2008 chose to omit these sections presumably because the prior AMDA already deals with advance decisions in medical situations. However, because of the restrictive nature of the scope and operation of the statutory AMD, it is often asked if other advance decisions that fall outside the AMDA are legally recognised and enforceable at common law.

Although the provisions of the AMDA do not address this issue explicitly, it seems reasonably clear that the Act is not meant to preclude advance decisions under the common law. Section 13(1) states that that Act shall not affect the right of any person to refuse medical or surgical treatment, without attempting to restrict it to contemporaneous decisions. This standing common law right to make advance decisions concerning medical treatment is well recognised.Footnote ³¹ In the local case of Re LP, the High Court recognised that “[g]enerally, a person who is sufficiently matured is entitled to give or withhold consent to any medical treatment and the doctors are entitled, if not obliged, to respect that person’s decision”.Footnote ³² Although the court left open the question of whether living wills or American-type advance directives distinct from an AMD were applicable here,Footnote ³³ its reasoning in authorising the amputation of the patient’s gangrenous legs held that the patient’s earlier statements to her doctors did not amount to a clear, express refusal of treatment presently proposed.Footnote ³⁴ This appears to be an implicit endorsement of the right of a patient to refuse treatment in advance at common law. Furthermore, the NMEC’s proposals to legislate on AMDs made clear that the intention in doing so was to provide a clear and certain legislative route, while allowing for the continued development of ethical principles and common law in relation to advance directives and related issues.Footnote ³⁵

Therefore, patients dissatisfied with the limited ambit of the statutory instrument could have recourse to a common law advance directive.Footnote ³⁶ There are no prescribed formalities for this, although the common law places the burden on anyone seeking to rely on the terms of an advance decision to satisfactorily prove its existence and validity. However, where life is at stake, “clear and convincing” proof is required of its existence and continuing validity.Footnote ³⁷ The ethical guidance from the Singapore Medical Council on end-of-life care stipulates that a patient’s wishes not to receive specific treatments must be respected,Footnote ³⁸ while its Handbook on Medical Ethics states that, apart from an AMD, “any advance statement made by patients on care or treatment that they might accept or refuse in particular circumstances” is helpful in determining a patient’s values, concerns, wishes, and ultimately what is in their best interests.Footnote ³⁹ Although the SMC’s Handbook on Medical Ethics pronouncements are more likely intended to assist in the determination of a patient’s overall best interests under the MCA,Footnote ⁴⁰ the NMEC envisaged that discussions on ACP could lead to the drafting of an advance directive.Footnote ⁴¹ In particular, the committee described advance directives in broader terms than an AMD, encompassing “oral and/or written instructions that convey treatment preferences in the event of a loss of decision-making capacity”.Footnote ⁴²

However, this flexibility of form gives rise to potential evidentiary and interpretational uncertainties concerning the implementation of a common law advance decision. For example, there is no independent witness requirement at common law, and there is no equivalent statutory protection against civil or criminal liability or professional disciplinary proceedings in determining the validity of a common law directive. This may impede the respect for and implementation of such advance decisions. Unlike the AMD, there is also no statutory registration mechanism that might provide assurance that the terms of a written common law directive will be brought to the attention of attending physicians in the appropriate circumstances – but access to the AMD registry is an unwieldy process to begin with.Footnote ⁴³

The Specific Licensing Terms and Conditions on Medical Records for Healthcare Institutions instead requires that a patient’s medical record include documents pertaining to her advance care plan if prepared.Footnote ⁴⁴ As ACP may result in the documentation of an advance decision to accept or refuse medical treatment, which could arguably amount to a valid common law directive,Footnote ⁴⁵ this must therefore be captured in the medical record as well. The National ACP Steering Committee and Agency for Integrated Care have also rolled out an ACP information technology system that captures key decisions on care options, and catalogues conversation transcripts and other supporting documents into a single record. Since April 2017, this system has been integrated with the National Electronic Health Record (NEHR), thus enhancing accessibility and availability across different institutional care settings.Footnote ⁴⁶ It therefore becomes more likely that any common law advance directives made by a patient in the process of ACP will be brought to the attention of attending physicians throughout the public healthcare system with access to the NEHR. Nevertheless, under the Living Matters ACP initiative, the emphasis has been to deemphasise the completion of legal directives and promote iterative conversations and regular opportunities to review care plans to adapt to changing health and care circumstances.Footnote ⁴⁷ There nonetheless seems to be less concern that any documentation on end-of-life planning will adversely influence the clinical care of the patient. In any case, the proscription on enquiring about the existence of an AMD does not apply to such instruments.

However, unless there is some standardisation of the language and intent behind such common law advance directives, uncertainties as to interpretation and circumstances of implementation will remain. In this respect, individual healthcare institutions are in the process of developing and implementing policies on how ACP documents are recorded and implemented.Footnote ⁴⁸ ACP documents preferences and values on types of treatment depending on the stage of illness. Some of these preferences may be stated in directive terms, such as “DO NOT attempt CPR [cardiopulmonary resuscitation]”,Footnote ⁴⁹ or indications that proxy decision-makers are to strictly follow the patient’s wishes.Footnote ⁵⁰ On the other hand, the terms advance directive or decision are eschewed, and standard forms begin with the overarching statement that physicians “will always act in the patient’s best interests…”.Footnote ⁵¹ This reference perhaps alludes to the best interests standard of proxy decision-making in the MCA 2008, where prior statements of wishes and feelings are to be considered but have no binding authority.Footnote ⁵² This leaves some uncertainty about whether ACP documented preferences and wishes that are sufficiently precise and directive will be treated as having the binding effect of a common law directive. Nevertheless, the uncertainties in interpretation and confidence in implementation by healthcare professionals that originally concerned the NMEC in its 1995 report appear, to some extent, to have been addressed by the development of ACP policies, documents and protocols at the institutional level. Information technology has also afforded the means to overcome barriers to access for common law advance directives that are produced as a result of ACP. What is needed is clearer professional guidance on the recognition and implementation of common law advance directives, otherwise any documented preferences may simply be overridden by professional medical judgement of the patient’s best interests or family objection on similar grounds.

3.2.1 End-of-Life Decisions in the Courts

Whilst ELDA 2016 represents the most significant legal development concerning end-of-life care in Korea, a full understanding of the trajectory of legal developments in this area requires that we first look at two landmark court cases that preceded the law and played an important role in motivating legal reform and changes to professional practice: the Boramae Hospital case (1998) and Severance Hospital case (2008). The latter was a civil lawsuit brought against the hospital concerned to force it to forgo life-sustaining treatment (LST), and the former was a criminal case against surgeons who had discharged a patient at his wife’s request. The current legal regulation on end-of-life care decisions took its shape from the Supreme Court’s decisions in these two cases. It is important to note that both cases pertained to the forgoing of LST, not to euthanasia.

3.2.2 Consensus Building Process (2009–2012)

The period prior to ELDA’s passage saw the Government set up various consultation bodies to facilitate social consensus-building in relation to end-of-life decision-making issues.Footnote ⁵

3.2.3 Legislation

Before the successful legislative attempt in the 19th session of the National Assembly (2016), there had been seven bills drafted since 2006, namely, the Revision of the Medical Practice Act (2006), Hospice-Palliative Care Act (2008), Death with Dignity Act (2009), Law on the Right to a Natural Death at the End Stage of Life (2009) and three additional bills drafted during the 18th session and then again in the 19th. These draft bills, each of which had a different emphasis, were unsuccessful, perhaps because the public was unclear about the nature of futile treatment and there was insufficient societal pressure to engage with such issues more actively. It is noteworthy, however, that the Death with Dignity campaign subsequently took hold within Korean society.Footnote ⁸ Owing to newspaper coverage of the Severance Hospital case and to the “dying well” campaign, the broader population gradually began to understand the importance of the right to self-determination and the possibility of dying free of any unnecessary medical interventions.

In 2015, a National Assembly member submitted a bill based on the recommendations of the National Bioethics Review Committee, and three other competing bills were also submitted. At a later stage of the legislative process, the bill on end-of-life decision-making and the bill on hospice palliative care were merged. In a sense, palliative care and end-of-life decision-making are closely related, and both had hitherto received less attention than they deserved. The new law came into force in July 2017, and its executive orders – a presidential decree and enforcement regulation – were legislated thereafter.Footnote ⁹

As noted at the outset of this chapter, ELDA was passed on 8 January 2016. The Supreme Court had in the Severance Hospital case recommended legislation on the issues concerned in 2009, and thus the Act took many years to execute. ELDA’s goal is “to secure the patient’s best interest and to protect … human dignity and value by respecting self-determination” (Article 1 of ELDA). To achieve that goal, the Act is equipped with two mechanisms: the provision of hospice palliative care to terminal patients and clarification of the end-of-life care decision-making process. With respect to the former, ELDA declares the right of patients to hospice palliative care and the responsibility of healthcare providers and states to provide it. With respect to the latter, the legislation provides clinicians and patients with a decision-making framework, as well as the interpretation and application of relevant principles, which can potentially remove the confusion and settle the debate amongst Korean society.

3.3.1 Principles of End-of-Life Care and the State’s Responsibilities

3.3.2 Scope of the Application

Article 2 of ELDA provides definitions and defines the subjects of application. Interestingly, the law distinguishes the terminal stage of disease from the dying stage and terminal patients from dying patients. A “terminal patient” is defined in Article 2 as

He or she is also regarded as a potential hospice palliative care beneficiary, but one who is unable to elect the termination of LST. The article originally listed four diseases as terminal illnesses: cancer, AIDS, chronic obstructive pulmonary disease and chronic liver cirrhosis. However, other diseases were added by ordinance of the Ministry of Health and Welfare following the 2018 revision. Patients at the dying stage, or in the “end-of-life process”, are defined as in “a state of imminent death, in which there is no possibility of revitalisation or recovery despite treatment, and [whose] symptoms [are] worsen[ing] rapidly” (Article 2 of ELDA).

Article 2 of ELDA also originally limited the potential LSTs that could be foregone to four specific medical interventions: CPR, haemodialysis, anticancer chemotherapy and artificial ventilation care. This narrow definition was designed as a safeguard against the possible hasty withdrawal of LST but was criticised for ignoring clinical realities. It was thus subsequently revised to include (i) extracorporeal life support, (ii) transfusions, (iii) the infusion of hypertensors and (iv) any procedures medically assessed by the physician to be withheld or withdrawn in the patient’s best interests. It can thus be seen that the legislative approach moved away from narrow definitions towards leaving the determination of whether a given treatment constitutes a futile LST to clinical judgement. As for how such judgement should be exercised, there is published professional guidance that suggests, for example, how a patient’s vital signs should be interpreted. This approach demonstrates an understanding that not everything can be specified by law, and hence that the application of the law should be left to professional guidelines.

3.3.3 Institutionalisation of End-of-Life Care Decisions

According to ELDA, the state can establish several institutions to support the making and executing of end-of-life decisions on LST. Three official institutions have accordingly been established: the National Agency for the Management of Life-Sustaining Treatment (established under Article 9), the Agency for the Registration of Advance Statements for Life-Sustaining Treatment (ARAS) (established under Article 11) and Institutional Ethics Committees (IECs) (established under Article 14).

The National Agency operates the national end-of-life infrastructure, provides certified education and handles public relations. It works as a national AD registry, identifying and confirming LST plans (LSTPs) and ADs, and is accountable for producing and managing databases of ADs for LST, which cover both AD and LSTP registries. The National Agency also provides research and statistical information on end-of-life decision-making and the execution thereof and is responsible for granting licences to institutions such as hospitals to become registering institutions.

ARAS oversees the private and public institutions that are the focal point of end-of-life decision-making services for the public. These institutions, which can be healthcare institutions, public health centres or qualified non-governmental organisations, provide information to patients (see Section 3.4.2 for further details) and transfer the documents that patients create.

Finally, IECs have similar functions to clinical ethics committees. Their various functions include (i) deliberation (including the review of consulting requests from patients and physicians and requests to change the attending physician) and the review of ADs (although they do not decide on them); (ii) the education of professionals; and (iii) reporting and referral to the National Agency. Physicians may also consult an IEC on a particular prognosis or to seek legal clarification. Whilst IEC recommendations carry some weight, they are not technically binding. In light of the IECs’ wide range of functions, they are expected to become the focal point of reporting and communication with the National Agency.

3.4.1 Life-Sustaining Treatment Plans

According to Article 10 of ELDA, an end-of-life care plan takes the form of an LSTP. Under this regime, a doctor may supply the patient with the information required to prepare a plan to terminate LST or, at the patient’s request, prepare an LST plan for a terminal patient at a medical institution. Although the process can be initiated by a patient or the doctor in charge, physicians are seen as playing the leading role.

The process of preparing an LSTP under ELDA is akin to advance care planning, but is limited to LST during a terminal patient’s last days of life. The patient may in his or her LSTP specify matters relating to the termination of LST, as well as matters concerning the use of hospice care (Article 10(4) of ELDA). As safeguards, Article 10 of ELDA prescribes formalities for LSTPs and provides requirements for the registration of POLSTs at a medical institution, record-keeping and notification of the National Agency.

3.4.2 Advance Statement for Life-Sustaining Treatment

In Korea, an ASLST can be viewed only as evidence of a person’s preferences regarding LST until and unless it has been verified, as discussed in further detaillater. At the point of verification, it becomes binding on the doctor. An ASLST is a document similar to a living will. It is written when a person is relatively healthy and independent. It contains the person’s decisions regarding (i) the termination of LST and (ii) the use of hospice care where necessary (Article 12 of ELDA). There are no legal requirements in relation to either witnessing or how the person’s mental capacity is to be assessed. ELDA does, however, mandate that personnel from the registering institution meet with the person to confirm that he or she understands the following matters before the ASLST can be considered valid.

1. i. Matters concerning the methods of implementing LST and making a decision to terminate such treatment.

2. ii. Matters concerning selecting and using hospice care.

3. iii. Matters concerning the validity and invalidity of ASLSTs.

4. iv. Matters concerning the preparation, registration, keeping and notification of ASLSTs.

5. v. Matters concerning amending and withdrawing ASLSTs and subsequent measures.

6. vi. Other matters prescribed by ordinance of the Ministry of Health and Welfare.

The definition of registering institutions is construed narrowly under Article 11(1) of ELDA as a safeguard, limiting them to regional healthcare institutions under the Regional Public Health Act; medical institutions; public institutions under the Act on the Management of Public Institutions; and non-profit corporations registered with the Government that have the proper qualifications and trained personnel to provide services related to ASLSTs. Although registering institutions must be licensed, their personnel need not be medically or legally trained and may be representatives of the medical institution concerned or even volunteers. As they may have only a basic understanding of ASLSTs, it is not uncommon for the assessment of whether a person is mentally capable of making an ASLST to be left to the institution’s nurses or volunteers. After the ASLST is prepared, it has to be registered and kept at the registering institution (Article 12(4) of ELDA), and the National Agency must be notified of the registration (Article 12(5) of ELDA). Licensed healthcare professionals will then be able to access this ASLST when a decision regarding the use of LST or hospice care needs to be made.

As noted, although a registered ASLST is valid under ELDA, it can serve only as evidence regarding the patient’s LST preferences. For an ASLST to be binding, the doctor must verify the patient’s intentions with him or her when the ASLST is retrieved for use (Article 15 of ELDA). When the patient is in the “end-of-life process” but is still of sound mind, the requirement to verify the patient’s intentions does not pose much of a hurdle. In situations where the patient becomes incapacitated and is unable to verify the ASLST, however, the doctor needs to obtain the agreement of a second doctor (Article 17 of ELDA), and during this confirmation the doctors typically have a discussion with the family about the authenticity of the document. An additional complexity arises when a patient in the “dying stage” becomes incapacitated and has no ASLST. The current law does not provide for the designation of a proxy for LST-related decision-making, although it is worded such that the patient’s family members can bear witness to his or her LST preferences, which means that they are effectively able to make LST-related decisions on behalf of the patient in the event of incapacity. In such a situation, the doctor will consult with family members, and if they unanimously bear witness to a consistent expression of the patient’s preference, then that preference will be regarded as the patient’s will (in other words, his or her presumed will), and the doctor will need to follow it (Article 17, Clause 2 of ELDA).

3.4.3 LSTPs versus ASLSTs

There are thus two legal mechanisms by which individuals can indicate their preferences in relation to LST under ELDA, with LSTPs having priority over ASLSTs. That priority explains much of the confusion surrounding the force and application of ASLSTs. If an LSTP is made, any ASLST made prior to it becomes invalid. There are also many more hurdles to overcome before an ASLST can be made and/or implemented, including confirmation of the six matters listed previously and verification of the patient’s intentions (where the patient is capacitous), which reflects a rather reserved attitude towards ASLSTs.

There have been attempts to give more weight to ASLSTs, but there seems to be no appeal in legislation. In fact, the original objective was for LSTPs to support the implementation of ASLSTs, with an AD being a small but important component of giving a patient full control over a key decision within the larger process of planning his or her end-of-life care. However, that objective appears to have been lost in the legislative process. ASLSTs have yet to move past being an overarching statement of patient preferences that assists physicians in deciding on the use of LST. We will likely have to wait for another legislative opportunity for ASLSTs to reach their full potential. In the meantime, it is likely that they will remain marginalised or perhaps become even further marginalised given the reality of decision-making by patients and families in the Korean context, as we will see in the following section.

3.5.1 Low Utilisation Rate

Equipping patients with the power to decide what end-of-life care, LST in particular, best suits them is closely tied to the general well-being of the population. Such end-of-life decision-making mechanisms as LSTPs and ASLSTs enable patients to communicate their preferences regarding the use of LST and hospice care, allowing sufficient planning for a death with dignity and reducing the need for futile LST. However, as of January 2020, 85,076 LST decisions (LSTD) had been implemented, with the number of decisions made through family statements or agreements (55,775) nearly twice as high as the number made using an LSTP or ASLST (29,301). The LSTD system thus appears to be based on family decisions, which may or may not be based on patients’ preferences or wishes, rather than on direct records of those preferences/wishes, and less than 20 per cent of dying people seem to be benefiting from the legislation. One potential reason is the age and health status of those who currently make an AD, and the situation should improve as awareness of AD use grows and more healthcare professionals gain experience and knowledge of using ADs for end-of-life decision-making. Other reasons for the low utilisation rate of LSTPs and ASLSTs may be linked to the sociocultural context of Korea, which is explored in further detail next.

3.5.2 Sociocultural Context

The two key sociocultural factors that play an important role in end-of-life decision-making in Korea are the role of the family and the role of Confucian values.

In relation to first factor, as in other Asian countries, the life of the individual in Korea is strongly tied to the family. Individuals live for the family and by its support. The dignity of the individual is seen to come from the family, especially from generational relations. Accordingly, decisions regarding end-of-life care tend to be taken collectively. A study of end-of-life communication amongst elderly Koreans found that less than 20 per cent of patients prefer making treatment decisions alone,Footnote ¹³ with over 90 per cent of cancer patients and their caregivers preferring family involvement in treatment decision-making.Footnote ¹⁴ Family members do not perceive their involvement as infringing the patient’s autonomy, but rather as a means to show support and alleviate the patient’s burden.Footnote ¹⁵ There is thus less emphasis on the individual in end-of-life decision-making in Korea than in the West: patients generally do not express their preferences for a given treatment, and the family can be expected to take an active roleFootnote ¹⁶ or even decide on the patient’s behalf when it comes to life/death decisions.Footnote ^17, Footnote ¹⁸

In relation to the second factor, the current underutilisation of LSTPs and ASLSTs reflects the ethos of a traditionally Confucian society such as Korea,Footnote ¹⁹ particularly with respect to the elderly. Confucian values dictate that the care of elderly parents is the duty of children,Footnote ²⁰ and the elderly are, in turn, often dependent – financially and physically – on their children for healthcare and are expected to follow the decision of the family, particularly with respect to decisions pertaining to such value-laden issues as birth, marriage and death. The concept of Hyo (meaning filial piety) is also a cardinal Confucian virtue that plays a role in end-of-life decision-making. For example, it is common for children to feel obliged to continue LST for their family members because they equate providing medical treatment with being filial.Footnote ²¹ Furthermore, filial piety requires children to keep their parents comfortable for as long as possible. As many Koreans consider knowledge of a poor prognosis to be painful and even unbearable, information relating to their condition is often concealed from patients until the very end of their illness trajectory.Footnote ²² Given that research demonstrates a strong association between a patient’s understanding of his or her condition and his or her preference for making an AD,Footnote ²³ such concealment of information likely contributes to the low utilisation rate of LSTPs and ASLSTs.

3.6.1 Limited Autonomy

Although patients have opportunities to express their preferences to the people who care for them, such as their doctors, family members and other caregivers, the current law may limit their ability to exercise their autonomy, for example, by viewing an ASLST only as evidence of a person’s preferences rather than a binding statement and permitting surrogate decision-making by family members when the person is incapacitated. The result could well be too much emphasis on the family’s opinion at the expense of the patient’s. In addition to the risk of family members misinterpreting patients’ preferences, there is also the possibility of family members putting forth statements contrary to the ASLST if they do not agree with it and the patient is incapacitated. Revising ELDA in such a way that a valid ASLST always trumps the family’s decision-making authority would be one way to ensure that patients’ autonomy is strengthened in incapacitation scenarios.

In addition, the scope of ELDA’s application is overly narrow. For example, it applies only after a patient’s condition has been confirmed by two physicians to be irreversible and not responsive to treatment. Moreover, there are just four types of LSTs that can be withdrawn, namely, CPR, haemodialysis, the administration of anticancer drugs and mechanical ventilation (Article 2 of ELDA). These restrictions leave little space for patients’ preferences to be afforded much significance.

3.6.2 ELDA’s Inability to Reflect Societal Changes

ELDA adopts a narrow definition of “family members”, requiring them to be of the same bloodline (lineal ascendants, descendants and siblings) as the patient with the single exception of the patient’s spouse. In reality, not only are unregistered partnerships on the rise in Korea, but indirect family members (e.g. nieces and nephews) are also increasingly becoming patients’ primary or sole caregivers. As discussed previously, family members have a role in bearing witness to the patient’s preferences regarding LST, and, under the current legislation, that role is limited to family members as narrowly defined in ELDA to the exclusion of other caregivers who might be better able to offer evidence of those preferences. Furthermore, recent studies have shown a decrease in the younger generation’s perceived duty to take care of elderly parents.Footnote ²⁴ This shift in perceived responsibility and levels of involvement may also affect the feasibility of verifying a patient’s preferences through their family members. To adapt to Korea’s changing needs, it is worth considering whether ASLSTs could be implemented without further verification, particularly given that there are already procedures in place to confirm a patient’s understanding prior to the making of an ASLST.

In terms of the way forward, patient empowerment should be the first priority. The current legislative framework permits too large a role for the family in end-of-life decision-making. This is not to say that the family should not be engaged in the process at all, but rather that enabling patients to exercise their right to know and have their preferences respected should come first. From a legislative point of view, ELDA currently leaves many matters relating to ASLST validation open ended, and the legislative framework would thus benefit from a more systematic, well-planned validation process for ADs.Footnote ²⁵

4.2.1 Legislative Background

Although the first hospice (安寧病房, or palliative care ward) in Taiwan was established in 1990 in a Christian hospital (MacKay Memorial Hospital),Footnote ¹ and many academic medical centres have begun to establish palliative medicine wards, only a small portion of terminally ill patients are able to receive hospice care owing to the limited service volume and such care being an unfamiliar concept. Because the “doctor’s duty to rescue” was emphasised in the earlier version of the Medical Care ActFootnote ², many terminally ill patients received painful and burdensome CPR and other forms of LST in their final days in hospital. There was no definitive regulation or protocol concerning the withholding or withdrawal of LST from terminally ill patients prior to the HPCA’s enactment in 2000.

In response to the increasingly urgent need for Taiwan to establish clear legal procedures in relation to end-of-life care, a joint effort by healthcare professionals, social and religious leaders, legislators, and government officials was launched in 1993, with the HPCA finally being passed in 2000 after years of discussion and negotiation.Footnote ³

4.2.2 Hospice Palliative Care ActFootnote ⁴

The goal of the HPCA is to ensure that patients who are terminally ill have the freedom to choose hospice palliative care and refuse LST,Footnote ⁵ as demonstrated by Article 1, which states that the Act’s aim is to respect the wishes of terminally ill patients in relation to medical treatment and to protect their rights. A terminally ill patient is defined in Article 3 of the HPCA as an individual (i) who suffers from serious injury or illness, (ii) who has been diagnosed by a physician as incurable and (iii) for whom there is medical evidence showing that the inevitable prognosis is death within the near future.

Whilst the term “advance directive” is not used in the HPCA, Article 4 establishes a mechanism called the “letter of intent” by which a terminally ill patient can make a decision about whether he or she wishes to receive hospice palliative care or LST. To make a letter of intent, an individual needs to be a capacitous adult (Article 5).Footnote ⁶ The letter, which should state the individual’s wishes regarding the receipt of hospice palliative care or LST, should also contain his or her personal information and the date on which the letter was written (Article 4). The signing of the letter of intent should be witnessed by two individuals with full capacity. However, neither healthcare workers who are affiliated with medical institutions that provide hospice palliative care nor the individuals who will carry out the individual’s wishes with respect to LST are permitted to act as witnesses to avoid conflicts of obligations or roles (Article 4). Individuals can withdraw their wishes in writing at any time, either on their own or via their medical surrogate agent (Article 6), who can be appointed as part of the letter of intent (Article 5).

Once the letter of intent has been signed, the relevant competent authority (as defined in the HPCA) will note the letter’s existence in the individual’s national health insurance certificate, and the letter will be stored as an electronic file in the central competent authority’s database. If the contents of the letter of intent are inconsistent with the written wishes specified by the individual during the consent process prior to clinical treatment, the contemporaneous written consent, or refusal of consent, will prevail. In terms of application, where there is a signed letter of intent refusing consent to CPR or other forms of LST, these interventions cannot be administered as long as two physicians have confirmed that the patient is terminally ill (Article 7). If CPR or other LST has already begun, and the foregoing conditions have been satisfied, Article 7(5) allows such treatment to be terminated or withdrawn.

Where there is no letter of intent, and the patient is unable to express his or her wishes clearly, Article 7(3) of the HPCA provides that consent can be given instead by his or her closest relative, or by the physician in the patient’s medical best interests, although it is explicitly stated that neither of these decisions can contradict the patient’s previously expressed wishes. Article 7(4) provides a list of “closest relatives”, which are defined broadly to include third-degree relatives and first-degree relatives by marriage. In the event of disagreement between a patient’s closest relatives, the order in which the relatives are listed in Article 7(4) determines their priority. Article 7 defines the essential elements and practice of ADs for the withdrawal/withholding of CPR/LST from terminally ill patients. It also indicates the priority ranking of decision types: first, the patient’s personally signed AD/letter of intent; second, an AD/letter of intent signed by the patient’s surrogate or closest relative; and, third, a doctor’s medical order when the patient has no close relatives. In the third condition, the doctor’s decision must be made in the best interests of the patient after consultation with a palliative care specialist. None of these surrogate decisions should be contrary to a patient’s formerly expressed wishes.

The HPCA stipulates strict penalties for the violation of Article 7, which provides for the circumstances in which CPR or LST should be withheld. Article 10 states that physicians who violate Article 7 will be fined a sum between NT60,000 and NT300,000, and will either be suspended from practice for a period of between one month and one year or have their licence revoked completely. In terms of individuals who choose to end the lives of their family members without following the procedures laid down by the HPCA, court decisions suggest that such actions will be considered homicide.

4.2.3 Concerns with the HPCA

After the HPCA’s passage in 2000, clinical practice relating to end-of-life care in Taiwan changed gradually but remarkably. Both patients and doctors began to embrace the concept of respecting patients’ autonomous decisions at the end of life and to recognise that refusing CPR and LST was acceptable as long as the relevant procedures and documentation required by the HPCA were followed.

However, the HPCA has a number of limitations. First, it has been argued that the Act’s protection of patient autonomy is insufficient. For example, Article 8 requires that physicians inform terminally ill patients or their family members of the patient’s condition, hospice palliative care treatment and LST choices. Article 8 further stresses that patients are to be informed if they explicitly express the desire to be informed of their condition. Although this stipulation, on the one hand, protects a patient’s legal right to know about his or her own diagnosis, on the other hand, it also seemingly permits the traditional practice of information (bad news) being shared only with a patient’s family members but not the patient. Owing to such a vague zone of who can or should be informed of a diagnosis, some have argued that the individual’s right to informed consent is not fully protected under the HPCA.Footnote ⁷ However, such criticism lacks understanding of the fact that medical practices must progress over time with the evolution of social conceptions of patient autonomy. In a family-oriented model of end-of-life care practice such as that which prevails traditionally in Taiwan, the patient’s right to informed choices is made clear and affirmed through efforts to advance legal frameworks.

Second, the HPCA applies only to terminally ill patients. It does not cover individuals who cannot be described as having a terminal illness, such as those in a permanent vegetative state, those with severe dementia, those in an irreversible coma or those with motor neuron impairment arising from such rare diseases as amyotrophic lateral sclerosis. In response to this concern, representatives of rare disease patient groups and Legislator Yu-Shin Yang of the Legislative Yuan (the unicameral legislature of Taiwan) have launched efforts to meet the needs of these groups by advocating for a more fundamental solution through a legislative framework aimed at protecting a patient’s right of self-determination.

4.2.4 Patient Right to Autonomy Act

The PRAA was passed in December 2015, announced in January 2016 and became effective in January 2019. Its aims, as stated in Article 1, are to respect patient autonomy in the healthcare context, to safeguard patients’ right to a good death and to promote a harmonious physician-patient relationship.

The scope of the PRAA is wider than that of the HPCA. It no longer limits the withdrawal or withholding of CPR and LST to cases of terminal illness assessed by two specialist physicians. The LST category has also been broadened to include such interventions as artificial nutrition and hydration and antibiotics where they are being used to sustain life. Moreover, the PRAA expands the clinical conditions in which CPR and other forms of LST can be withdrawn or withheld beyond terminal illness: (1) irreversible coma; (2) a permanent vegetative state; (3) severe dementia; or (4) other disease conditions announced by the central competent authority (as defined in the PRAA) that meet the requirements that the condition or suffering is unbearable, the disease is incurable and no other appropriate treatment options are available given the medical standards at the time of the disease’s occurrence. The patient’s condition must also be diagnosed by two physicians in relevant specialties and confirmed through at least two consultations convened by the palliative care team (Article 14).

In terms of decision-making, the PRAA provides for an “advance medical decision” (預立醫療決定), defined as “a prior written and signed statement expressing the willingness of a person to accept or refuse life-sustaining treatment, artificial nutrition and hydration or other types of medical care, and their wishes relating to a good death, when they have been diagnosed with specific clinical conditions” (Article 3). As noted previously, the scope of this AD is wider than that of the letter of intent under the HPCA, which covers only decision-making with respect to hospice palliative care and LST.

The PRAA also provides more comprehensive protection for a patient’s right to informed consent. Article 4 states that patients have a right to be informed of their diagnosis and treatment options, as well as the potential effectiveness and risks of those options, and the right to choose and make decisions regarding treatment options. Moreover, a patient’s legal representative, spouse, relatives, healthcare agents and other closely related people (defined in the PRAA as “parties concerned”) are not to prevent a medical institution or physician from acting on the patient’s treatment decisions. This measure arguably provides patients with a rights-based form of resistance against the common phenomenon of family-based decision-making in Chinese culture, discussed further subsequently, and physicians with a way to preserve their authority to carry out a patient’s decision free of family influence. Accordingly, there is much greater emphasis in the PRAA on both enhancing and protecting patients’ autonomous decision-making, as expressed through an AD and other legislative requirements.

This is not to say that the PRAA does not envisage a role for the family in the end-of-life process, and indeed there are implicit tensions between the value of maximising respect for patient autonomy and the value of involving the family in identifying patients’ best interests within some of the PRAA’s articles. For instance, after specifying the list of items about which a medical institution or physician must inform the patient (in other words, the scope of the physician’s “duty to inform”), Article 5 states that “in the absence of clear objections from the patient, the parties concerned may also be informed”. Thus, unless the patient explicitly objects, his or her physician is permitted to share this information with his or her family. It is noteworthy that instead of requiring consent from the patient before such information is shared, the presumption is that the family is to be informed. Therefore, it is important to recognise that this requirement could be interpreted such that it does not mandate the physician to initiate a discussion with the patient about sharing information with his or her family during which the patient may or may not express an objection.

Another notable feature of the PRAA is the way in which it embeds the process of making an AD in a wider legal requirement to instigate advance care planning (ACP; 預立醫療照護諮商). The procedures for establishing an “advance decision” through ACP consultation must fulfil the following requirements: (i) a medical institution has provided consultation on ACP to the declarant and affixed its seal on his or her advance decision; (ii) the advance decision must be notarised by a notary public or witnessed by two or more persons with full disposing capacity; and (iii) the advance decision must be registered in the declarant’s national health insurance IC card. Furthermore, ACP must take place with the participation of at least one relative of a first or second degree of affinity (Article 9).

The Taiwanese Government has not yet taken any steps to cover ACP through the national health insurance system, which means that ACP participants currently need to pay a small out-of-pocket fee, generally in the region of US$80–150, depending on the standard set by the individual hospital. Some have thus argued that financial incentives may be necessary to increase the public’s willingness to embark on ACP consultation.Footnote ⁸ This author argues, however, that because ACP is resource-demanding and time consuming (as with any counsel of a psychologist or social worker), if the patient in question lacks motivation and understanding of the value and importance of ACP, then a fee-waiver policy would simply place an unnecessary burden on ACP consultants and waste scarce resources.

Other components of Article 9 are also worth noting. For example, it is expressly stated in Article 9(3) that at least one relative of a first or second degree of affinity must participate in the ACP process, which is in line with the emphasis on family-oriented decision-making in the Taiwanese context.Footnote ⁹ The rationale for such a legal design is that when tough end-of-life choices need to be made, family members must often act as patients’ surrogate decision-makers. The purpose of requiring close relatives to participate in the procedures of ACP consultation and AD signing is to build understanding of and consensus on a patient’s informed choices among family members to ensure that when the time comes to execute the AD there will be less disagreement and conflict.

4.2.5 Differences between the HPCA and PRAA

Whilst the HPCA and PRAA both concern a patient’s advance expression of his or her wishes in relation to end-of-life care, there is a significant difference between them in terms of physician liability. As discussed previously, the HPCA includes strict penalties for physicians who violate end-of-life procedures. The PRAA, in contrast, contains no such punitive measures, which were removed during the legislative process. The Ministry of Health and Welfare has explained that “since patient autonomy involves ethics, professional judgement, personal belief and other variables, using penalty or compulsory means to force physicians, patients or families to comply with the law would be non-beneficial to the promotion of such legislation”.Footnote ¹⁰

One of the difficulties that arose during the legislative process concerned physicians’ unwillingness or refusal to withhold or withdraw LST and/or artificial hydration or nutrition from non-terminally ill patients due to conscientious objection.Footnote ¹¹ Indeed, Article 14 allows very wide space for professional autonomy in that it permits a physician to refuse to implement a patient’s AD on the basis of his or her “professional expertise or wishes”, a wider scope of opt-out for a professional than reliance on his or her personal values or beliefs. In such a case, the physician is required only to inform the patient or parties concerned (Article 14), and the patient may then turn to other healthcare professionals who are able to assist.

Article 14 further protects physicians from liability by stating that they will not be subject to criminal or administrative liability if they terminate, withdraw or withhold LST and/or artificial nutrition and hydration in accordance with the article and that they will bear no responsibility to compensate for any damage incurred unless intentional or grossly negligent conduct is involved and the action is in violation of the patient’s AD. These detailed, comprehensive guarantees of protection from liability for physicians, which resulted from negotiation during the legislative process, are arguably a way to reduce the pressure and burden involved in forgoing LST and/or artificial nutrition and hydration and to provide reassurances to mitigate the tensions that may arise.

4.4.1 Insufficient Awareness and/or Understanding

There are data suggesting that there is insufficient awareness and understanding of the concepts of ADs and palliative care among the general public. In 2016, Lin et al. reported that the majority of the elderly individuals and their family members whom they had surveyed in the intensive care unit of a medical centre in central Taiwan had an insufficient understanding of ADs.Footnote ¹⁷ In a more recent study conducted in 2021 that compared the differences in AD acceptance between millennials and baby boomers, Liang et al. found that, despite the Ministry of Health and Welfare of Taiwan announcing measures associated with the PRAA to assist the general public in understanding ADs, participants from both generations were still unfamiliar with ADs and who was able to accept palliative care.Footnote ¹⁸

The data from these studies align with commentary suggesting that the general public has misconceptions concerning the nature of advance decisions to refuse LST such as CPR and of hospice care. Among the misconceptions are that signing up for either effectively means that they have “given up” or that they are giving up all treatment.Footnote ¹⁹ Liang et al. similarly found the low willingness among their participants to sign a letter of intent under the HPCA to be “associated with their erroneous perception that signing the intent [letter] means giving up all medical treatment”.Footnote ²⁰

In relation to medical professionals, the data are slightly less clear. Preliminary data from Chen et al. suggest that the PRAA has had a significantly positive impact on the knowledge of healthcare practitioners, with concepts such as “informed consent” and “decision-making directives” becoming more widely accepted in 2018 (as compared with 2013).Footnote ²¹ In a study conducted among healthcare professionals in the field of nephrology, Chiu et al. found that when asked about their knowledge of laws related to ADs, there were three particular areas in which the respondents achieved relatively low scores: (i) understanding of the scope of the HPCA following its revision; (ii) understanding of the matters that one should be aware of when intervening with an AD; and (iii) the difference between an AD and a do-not-resuscitate order.Footnote ²² Whilst the latter study does not provide us with sufficient information to properly interpret its results,Footnote ²³ taken together the findings of the two studies seem to suggest that although efforts to promote the PRAA appear to have had a positive effect on healthcare professionals in Taiwan, there are still specific areas in which their knowledge and understanding remain weak and require further training.

4.4.2 Emphasis on the Role of the Family

In addition to insufficient awareness and understanding of ADs, particularly among the general public, the low uptake of ADs may also be explained by certain sociocultural characteristics of Taiwan. In addition to the taboo associated with death, which results in the avoidance of conversations about end-of-life care,Footnote ²⁴ there is a significant emphasis on the role of the family in the medical decision-making context. Medical decisions in Taiwan are commonly seen as family decisions that should be made collectively between the family and the patient rather than decisions that patients should make on their own.Footnote ²⁵ In extreme cases (which were not uncommon as recently as one or two decades ago), the family takes complete responsibility for medical decision-making, with patients denied any opportunity to participate. Presumably, however, this type of collusion between physician and family will be made much more difficult by the regulatory requirement to inform patients of their diagnosis, treatment options and right to make autonomous decisions, as enshrined in the PRAA.

In addition, because of the strong influence of the Confucian doctrine of filial piety, which results in adult children remaining subordinate to their parents and being expected to provide care without question, in some instances adult children in Taiwanese society do not proactively engage in discussions about ADs with their parents or other elders.Footnote ²⁶

4.4.3 The Way Forward

What might be the way forward for Taiwan in light of these possible challenges to the acceptance and uptake of ADs? In terms of improving awareness and understanding, there are data suggesting that implementing ACP programmes containing education on palliative care and ADs has the potential to improve knowledge of and attitudes towards ADs in Taiwan.Footnote ²⁷ The lack of focused good practice guidelines emanating from within the healthcare profession on how to translate basic legal requirements into a complex, skilled and multidisciplinary process of making advance care plans and advance decisions across different health and community care settings should also be addressed.

Additionally, the 2018 study of Chu et al. on the factors associated with the completion of ADs found that patients were more likely to complete them if social workers participated in the ACP meeting required by the PRAA.Footnote ²⁸ The authors observed that social workers provide support in multiple ways, including offering patients more information about their rights, identifying the major decision-makers among family members and offering emotional support. Because of such support, they suggested that social workers have an important role to play in the ACP process. In light of these findings, the development and implementation of ACP programmes that provide education on ADs, as well as further research on the proper role of social workers in the ACP process, may be steps that can be taken to improve the uptake of ADs in Taiwan.

A thornier issue may be the cultural influences on the acceptance of ADs. For example, both the traditional emphasis on family-based decision-making in the medical context and the expectation that children will take care of their parents in their old age without question may make it difficult for families to support an individual-oriented form of decision-making through the practice of ADs. However, from the author’s experience and observations in clinical practice and ethics consultation, such traditional concepts and practices have changed gradually but remarkably in the past two decades, during which Taiwan has also undergone tremendous transformation in terms of political freedom and a democratic system.Footnote ²⁹ The young and even middle-aged adults who have grown up in a rapidly developing democratic society that emphasises personal freedoms and individual rights are likely to have little difficulty embracing patients’ right to autonomy in medical decision-making. The aforementioned cultural influences and traditional practices are increasingly being transformed into an endorsement of patient autonomy and self-determination, or at least “shared decision-making”, as more desirable standards. Portrayals of Chinese culture as characterised by “family-determinism” rather than “individual-determinism” are imprecise, dichotomised, unfeasible and inapplicable to the current Taiwanese context.Footnote ³⁰

The AD approach in the PRAA is family oriented to some extent. As discussed previously, whilst the Act protects individuals’ right to informed consent and to treatment in accordance with their wishes without familial interference, it also contains provisions that presume that information about a patient’s condition should be shared with family members unless otherwise explicitly indicated and, more importantly, that require a family member to attend the ACP meeting in order for the individual to be able to make an AD.

Hence, the PRAA preserves key features of family-based decision-making while advocating for respect for individual autonomy, and should arguably be promoted as such to emphasise its alignment with certain traditional cultural elements. In this sense, describing the Act in terms of a basic requirement to protect a person’s autonomy rights fails to do justice to the complex and multiple values that intersect within its regulatory requirements and that need to be negotiated by practitioners, patients and family members in practice. The Asian Delphi Taskforce for Advance Care Planning has done initial work on developing good practice in light of these tensions, in particular through its publication of the 2019 Taipei Declaration on Advance Care Planning, which recommends tasks for each role in ACP, taking into account Asian cultural influences.Footnote ³¹ Of particular note here is (i) recognising that family members and other caregivers have needs that should be attended to as part of the patient’s care; (ii) expecting family members to participate actively in ACP discussions; and (iii) co-opting family members in the ACP process to remind, help or accompany the patient in the process of sharing goals and preferences.

5.1.1 Background of Thai Laws on ADs

Since 2003, the notion that individuals may aspire to achieving a ‘good death’, aligned with the principle of a patient’s right to refuse medical treatment, has generated robust debate between medical professionals, legal scholars and practitioners. Before the introduction of Universal Health Coverage (UHC)Footnote ¹ in 2002, the high costs of medical treatment imposed considerable financial burdens on most Thai people. The ability to access medical and health services was therefore regarded as a matter of “luck”Footnote ²; few people therefore even considered the idea that in the event of a diagnosis of a terminal illness, they might wish to refuse medical treatment, or that such treatment might prolong the dying process and cause the terminally ill patient unnecessary pain and suffering. Unlike some other countries where health and human rights groups have been advocating for patients’ rights – especially the right to refuse medical treatment – most Thai people are unfamiliar with the principle of the right of patients to self-determination. Thailand’s Constitution recognises the principle of individual autonomy and the rights of human dignity, yet, the notion that some people might wish to refuse medical treatment has been characterised by some people – including some within the legal profession – of representing a threat to public order and morals; refusal of treatment was therefore void under Thai law.

The issue of patients’ right to refuse life-saving medical treatment was explicitly raised in 2003, when the Ministry of Public Health submitted a legal question to the Office of the Council of the State (OCS), a body which functions as a legal consultant for state agencies.Footnote ³ The question concerned a case involving a member of the Jehovah’s Witnesses faith community, who made an AD stipulating that they wished to refuse blood transfusions as part of any life-saving treatment. Medical professionals were undecided as to whether they should follow such a directive, or should prevail in providing the blood transfusion treatment to forestall any criminal liabilities. Responding to the concern of medical professionals, the OCS suggested that in cases where blood transfusion was a critical element of the life-saving treatment, doctors must provide the blood transfusion, even though doing so went against the patient’s expressed will. Medical professionals are dutifully and legally bound to save a patient’s life, so to follow the patient’s will, and to therefore cease to provide life-saving treatment, would be construed as having breached Thai law, and hence, they might be criminally liable for failure to provide life-saving treatment.Footnote ⁴ The OCS argued that implementation of the patient’s will – here specifically, allowing the patient to refuse treatment – could potentially ruin the existing positive relationships between doctors and patients. More so, to implement a patient’s AD to withhold life-saving treatment would represent an act of non-compliance with medical ethics, which stipulate that doctors must act to save life. And finally, it was argued that for doctors to observe patients’ right of autonomy would also conflict with the concept of the good Samaritan, a humanistic principle which holds that a person should help others – including strangers – who are in danger. Several doctors disagreed with the OCS’ legal advice, arguing instead that allowing the implementation of a patient’s AD in no way represented a threat to public order and morals, but should instead be respected as the exercise of a patient’s right to autonomy.Footnote ⁵

While not binding, the legal opinion of the OCS is the starting point for debates over which patients’ rights require legal protection. This legal issue was of particular concern to a number of public health professionals,Footnote ⁶ presumably because of the serious implications for their possible criminal liabilities. The debate led to much discussion about, and the drafting of specific legislation on ADs, in 2004, one year after the OCS had rendered its legal opinion. Notably, the drafting committee included representatives of the medical professions.Footnote ⁷ The subsequent introduction of the National Health Act in 2007 incorporates ideas that emerged from the drafting process, and Article 12 explicitly gives recognition to a patient’s right to self-determination in the context of ADs. The details of the AD regime were further clarified in a ministerial regulation of 2010.Footnote ⁸

5.1.2 Scope and Conditions of ADs under Thai Laws

Article 12 of the National Health Act 2007 states that a person has the right to make an AD setting out their desire “to refuse any futile health services which simply prolong death or cause suffering”. Public health professions are exempted from any liabilities arising from their actions taken in accordance with fulfilling the patient’s expressed will. Article 12 seeks to preserve the human dignity of a patient, as enshrined in the Constitution’s specific mandate for the protection of patient autonomy over their lives and bodies. It gives patients the right to refuse medical treatment and to have a “good death”, rather than to accept life-prolonging treatment involving the use of medical technologies that would likely cause further pain and suffering but which would ultimately prove futile.Footnote ⁹ The scope of an AD is therefore limited to ensuring that a patient has some control over their dying and can experience a “good death”.Footnote ¹⁰ In other words, an AD explicitly sets out the patient’s refusal of medical treatment. An AD will only be implemented if (i) the patient is in a terminally ill stage; or (ii) the patient has an incurable disease for which medical treatment will merely prolong an inevitable death, including a persistent vegetative state.Footnote ¹¹ In cases where the patient remains conscious and retains the capacity to communicate, the medical professional responsible for the treatment of such a patient must ask for the patient’s confirmation of their wish as expressed within the AD, prior to implementing their will.Footnote ¹² It must be noted that Article 12 does not allow for either “mercy” killing or active euthanasia, but is applicable solely within the context of a strictly defined “end-of-life” scenario. Its use is limited to the right to refuse to accept treatment when the disease has progressed to the stage where treatment is futile and/or causes further suffering.

Thai legislation does not prescribe a specific formal format for an AD; Article 12 merely requires a written statement to be made while the individual is conscious, of sound mental capacity and has full understanding of their actions and the consequences. There is no requirement that medical or legal personnel should be involved or present; a person can make an AD, alone, without having to consult public health professionals. The practical difficulties involved in establishing whether an AD was made when its maker possessed the mental capacity to make such a momentous decision is an issue to be discussed in a later section, but in theory or practice, Thai laws do not require an assessment of mental capacity at the time of writing the AD. Ministerial regulations merely provide guidelines on the information to be included in an AD:Footnote ¹³

• The personal biodata information of the person who makes the AD, namely name and surname, age, national identification number, and address or contact number.

• Date the AD was made.

• Name(s), surname(s), and national identification number(s) of a witness/witnesses, and their relationship to the person making the AD.

• The specific medical services or treatment that the patient does not wish to receive.

• In cases where individuals have requested another person to write or type the AD on their behalf, the surname and national identification number of that person should be stated.

• The signatures or fingerprints of the person who makes the AD and that of the witness/witnesses.

It must be noted that the ministerial regulations require only that the intentions of the patient making the AD are clearly stated; other requirements, such as stating the name of the witness and their signature, are solely intended as guidance on how to make a clear AD. It is an illustrative, rather than an exhaustive list, and as such, the AD is valid whether it provides less – or more – information than the AD guidance suggests. It stipulates only that the AD be in the form of a written statement and clearly indicates the individual’s will.

Since the clarity of intention of an AD is required, in order to ensure the precise understanding of their intention, a patient can specify the name of a person who is able to clarify their intention as stated in the AD. Generally, the patient chooses a family member with whom they share close relationship, and who has been (unofficially) informed by the patient of their will.Footnote ¹⁴ The option to enlist the help of a trusted and familiar person is particularly helpful in cases where there is some confusion or ambiguity, and the person who made the AD is no longer in a state where they are able to explain their will. As stated previously, it is imperative that a patient who makes an AD put their signature and national identification on the document,Footnote ¹⁵ so as to enable the later identification of such persons. In some cases, while the patient might believe that the terms used in the AD are unambiguous and clear, it is possible that the language or terms employed might be confusing to the reader. In such a situation, it is envisaged that the named person would be able to clearly and correctly articulate and explain the patient’s will to the doctor. The inclusion of this named person therefore serves to ensure that the AD conforms with the requirement for clarity; the named person is not authorised to make any decisions on behalf of the patient, and they play no part in proving the validity of an AD, their sole purpose being to help clarify the patient’s will.

The state does not require the registration of ADs with state officials; the ministerial regulation suggests only that a patient give their AD to public health professionals as soon as possible, when receiving medical treatment.Footnote ¹⁶ Article 12 exempts medical professionals from criminal liabilities for carrying out the patient’s will as set out in an AD. However, neither Article 12 nor the ministerial regulation imposes sanctions for non-compliance with an AD. In other words, if a doctor does not follow the patient’s request for termination or withholding of medical treatment, they will not face any particular liabilities under the laws regulating ADs. This then raises questions about the actual effectiveness of ADs in Thailand, as will be further discussed in Section 5.3.

In terms of implementation, practical problems can also result from the informality of the template of an AD. While the laws require the clarity of an AD, the inclusion of some important information – albeit, limited – to support the validity of an AD, such as the identification and signature of a witness, is merely a recommendation, and not mandatory. Flexibility may facilitate and perhaps encourage more people to make ADs, but an AD that does not contain sufficient information to support its validity can be the source of problems that might inhibit its implementation. When identification of witnesses is not required, the possibility arises that some people might choose to simply forgo a witness, an issue to be further discussed in Section 5.3.

The provision of palliative care, however, must continue even if medical treatment is refused.Footnote ¹⁷ There is no definition of “palliative care” within Thai laws; instead, Thai healthcare services employ the definition provided by World Health Organisation (WHO) to clarify the particular healthcare provision and duties of health professions for patients.Footnote ¹⁸ The obligation for healthcare professions to provide palliative care against the patient’s expressed will raises the question of how to balance the tensions between maintaining respect for individual autonomy and enabling the achievement of a good death. The concept of “patients’ rights” is conventionally based on the notion of individuals having decision-making autonomy over their own lives, in accordance with their own values. These tensions have long been the subject of debate; what, if any, are the limits to patient autonomy, and how can this be squared with medical knowledge and judgement on the best course of action (or inaction) for a patient?Footnote ¹⁹ Thailand has grappled with these tensions after the patients’ right to self-determination was recognised in Article 12 of the National Health Act, in a form of ADs. Some medical professionals were concerned about their possible criminal liability under this provision; it is they, after all, who generally shoulder responsibility for their patients’ healthcare, and the decision on whether to continue or terminate medical treatment should, they reasoned, be made by physicians, rather than by patients.

In 2011, a group of physicians brought a case to court, claiming that Thai legal regulations on ADs were against public order and morals, since such rules impose burdens on medical professionals who carried the weighty responsibility of deciding whether a patient had reached the terminal stage, before implementing an AD. They must also decide what forms and nature of treatment constitute palliative care. However, the law allows medical professionals to avoid any possibility of being held criminally liable if they are acting in accordance with the patients’ advance decisions. An AD was hence alleged to enable a patient to reject the evidence-based knowledge, expertise and decisions of medical professionals. The court decided that the legal rules on ADs did not impose any significant burdens on medical professionals, for under Thai law, the right to the use of an AD was not to be construed as allowing active euthanasia or mercy killing; it was instead to be interpreted as the patient’s right to refuse treatment in order to die a peaceful and dignified “good death”; medical professionals merely had to respect the patient’s decisions. The Thai legal rules on ADs are thus lawful and constitutional.Footnote ²⁰

Superficially, the court’s decision in this case appeared to emphasise the value of patient autonomy over medical judgement, by prioritising respect for the patient’s decision rather than privileging the doctors’ judgements of the best course of action and treatment for the patient. However, Article 12 does not leave all decision-making power with the patient. The mandatory provision of palliative care under the ministerial regulation demonstrates continued state intervention to a certain extent, in particular in relation to the imposing of normative values about what constitutes a good death. Moreover, this insistence on continued palliative care overrides the patient’s will. In practice however, such state intervention might not be harmful to most patients; should a patient decide to refuse what they consider to be ultimately futile treatment,Footnote ²¹ the palliative care regime usually coheres with the patient’s desire for less suffering.

5.1.3 Further Development of the AD Regime

Apart from establishing specific legal rules for ADs in the form of the National Health Act and the ministerial regulations, the National Health Commission Office (NHCO) has published a manual (generally referred to as the NHCO Guide) which provides guidance for health service providers on dealing with ADs. Despite its 2007 introduction in the provisions of the National Health Act, the concept of an AD is not well understood among health professionals. The aforementioned court case brought in 2011 provides a salient and instructive example of the limited knowledge of some public health professionals as to the proper scope of palliative care.Footnote ²² It also revealed their prominent anxieties about the possibility of facing criminal liability should they fail in their professional and ethical duty to provide medical treatment. The claimants in this case (whom it will be recalled were medical professionals) had misinterpreted the regulations and believed that an AD enabled a patient to request a “mercy killing”. The basis of their claim indicates the paucity of their knowledge and understanding about ADs, as well as a degree of uncertainty about the correct meaning of some terms (such as palliative treatment and futile treatment that simply prolongs death) contained within the ministerial regulations. Acknowledging this problem, the NHCO responded with efforts to enhance understanding of ADs, including the publication of a web-based manual which provides clarity to the concept of an AD, the conditions framing their use and implementation, as well as clarifying the definition and processes of palliative care.Footnote ²³

The NHCO’s guidance manual also suggests the proper practice of public health professionals when faced with a situation where a patient has written an AD. When informed of the AD, public health professionals must first observe and confirm the mental capability of the patient to ensure that they had created the document while fully conscious of its intended outcome and were of sound mental capacity at the time of writing. It must be noted that this action constitutes guidance rather than an actual directive mandating a public health professional to conduct a preliminary assessment of the patient’s mental capabilities. Such an approach is inherently problematic, however, for the mental capability of a patient at the time they provide the AD to the doctor generally does not always equate to the patient’s mental state at the time of crafting their AD. It is possible that while the AD was made when the patient was conscious and cognisant of their intentions, by the time the AD was submitted to the relevant medical professional, the patient no longer had capacity. Another possible scenario is where a patient did not have mental capacity when the AD was made, but subsequently regained their mental capacity at the time of submitting the AD. In such cases, the medical professional might face difficulty in verifying the patient’s capability at the time of making the AD, and therefore not be able to implement the AD.

After the preliminary assessment of the patient’s capacity, the patient’s will as indicated in an AD must be noted in their medical record. The physician then makes a copy of the AD and returns the original AD to the patient. Should the patient be later moved to another public health facility, another copy of the AD should be made and sent with the patient to the new public health facility.Footnote ²⁴ The NHCO also raises public awareness of ADs through the publication of information leaflets, guidance manuals, and samples of ADs, which can be easily found on an online website which provides specific information on ADs under the supervision of the NHCO.Footnote ²⁵

5.1.4 Child ADs

Does a minor have the autonomy to make an AD of their own? This troubling question has been the subject of much debate, since Article 12 does not specify any minimum age as one of the conditions of an AD. Some lawyers have referred to the Declaration of Patient’s RightsFootnote ²⁶ in seeking answers to this question. This declaration confirms parental rights to exercise a patient’s rights on behalf of their minor children below eighteen years of age, thus leading some scholars to argue that parents are therefore empowered to write an AD for their child.Footnote ²⁷ Meanwhile, the NHCO guidance mentioned previously states that a person below eighteen years of age can make an AD with the permission of their parents.Footnote ²⁸ The difference between the declaration and the NHCO guidance matters, in that in the former, parents may make an AD on behalf of their child, while in the latter interpretation, a child patient has the right to make an AD, but only with parental permission. In other words, the former assumes the patient’s will, while the latter directly reflects the patient’s will.

The matter of children’s capacity and right to make an AD remains undecided by the courts, and in fact, has not generated much debate, presumably because children are not usually expected to have fatal illnesses in their youth; it is rare indeed to find an AD made by or on behalf of a child patient. Nevertheless, it is still of theoretical interest that a minor might be interpreted as having the capability to make an AD, albeit with parental permission. Conventionally, Thai laws recognise the incapacity of a minor to make a juristic act, and prevents a minor from doing as such for the minor’s own benefit, though there are some exceptions including some personal acts that a minor must decide their own, and in which no other persons are permitted to intervene, or to pre-empt such decision, such as certifying a child’s birth.Footnote ²⁹ A minor is allowed to make a will when they reach the age of fifteen years.Footnote ³⁰ Any will made before that, even if it lasts until a minor becomes sui juris, are deemed void.Footnote ³¹ Parents cannot make a will on behalf of their child, nor can they give permission to a child below fifteen years of age to write their own will. An AD – usually called a living will – is comparable to a typical will. The limitations placed on the juristic acts a minor is able to make are justified on the grounds that they are intended to protect a minor’s benefits, and to safeguard them from those who might seek to take advantage of their young age. While the law allows a minor of fifteen years of age to make an enforceable will, there is currently no minimum age for the same minor to make an AD (even if parental permission is required), which could disadvantage rather than benefit a minor. What a “good death” means to a person is considerably subjective and personal, and the idea that parents can make an AD on behalf of their child expands parental powers over a child, which is not coherent with other legal provisions that preserve some rights solely for the individual, rather than the entire family. Even the other interpretation that imposes no age minimum but instead allows a minor to themselves make an AD raises doubts about the appropriateness of allowing a child to make such a grave and consequential life-concerning decision. Although the family relationship is of great importance within Thai culture, some legal rights are nevertheless personal, and should be reserved for one’s own decision. I explore further the tension between the principle of autonomy and the role of family in implementing an AD in Section 5.2.

6.2.1 The Legal Understanding of Life and Death

To understand the legalisation of ADs, one must first understand the Indian legal approach to life and death. Article 21 of the Constitution of India guarantees the right to life: “No person shall be deprived of his life or personal liberty except by a procedure established by law”.Footnote ⁵ Following the case of Maneka Gandhi v. Union of India,Footnote ⁶ Article 21 of the Constitution of India has been given a very expansive interpretation by the Supreme Court of India to embody dignityFootnote ⁷ and a meaningful, complete life worth living. Since then, Article 21 of the Constitution of India has also been the anchor of many welfare rights.

In the context of patients suffering from terminal illness, the pertinent question is whether the right to life includes the right to die and to die with dignity. The legalisation of end-of-life ADs has been by extension of the right to self-determination involved in the refusal of treatment and withdrawal of life support in this context. As the legal situation currently stands, ADs are seen as a mechanism to ensure death with dignity, as they involve self-determination. What the situation thus demands is translation of the abstract right to death with dignity into concrete regulatory processes to ensure realisation of that right. Accordingly, it is important to understand, as part of the AD context, the journey that led to the legalisation of death with dignity in the form of passive euthanasia.

6.2.2 The Aruna Shanbaug Case (2011)

The battle surrounding the legalisation of euthanasia took centre stage and garnered nationwide attention with the Aruna Ramchandra Shanbaug v. Union of India case.Footnote ⁸ The case concerned the brutal rape and assault of a nurse at KEM Hospital Mumbai by a ward boy, which left her in a persistent vegetative state. The Supreme Court held that passive euthanasia (understood here as the withdrawal of life-sustaining treatment) could be legalised only through an act of Parliament. The two-judge bench of the court made a distinction between active and passive, and voluntary and involuntary, euthanasia. The procedure it devised required that a high court be approached directly concerning every single case in which life-sustaining treatment was to be withdrawn.

Just as in the Airedale National Health Service Trust v. Bland case,Footnote ⁹ Aruna Shanbaug had made no express provision for an AD. In Aruna Shanbaug, a reference to ADs was made in the report submitted to the court by medical experts, who also stated that they had no information concerning the expressed views or wishes of Aruna Shanbaug.Footnote ¹⁰ The amicus curiae in the case also brought up the link between self-determination, used interchangeably with informed consent, and ADs.Footnote ¹¹ The court laid down guidelines on the withdrawal of life support, which were to remain in force until Parliament enacted a law. Under those guidelines, the decision to withdraw life support should be taken in the best interests of the patient if she is unable to make a decision for herself.Footnote ¹² Such a decision could be taken by a person or body of persons acting as “the next friend” and could also be taken by the patient’s doctors. However, the decision required the approval of the high court concerned.Footnote ¹³ The Supreme Court in this case limited itself to acceptance that there had been no expression of wishes without going into the question of the legality of ADs per se.

6.2.3 Law Commission of India Reports (2006 and 2012)

The next milestone in the development of end-of-life AD legislation was two Law Commission of India reports, specifically the 196th report published in March 2006,Footnote ¹⁴ which discussed the withholding of life support measures from terminally ill patients, and the 241st report published in August 2012Footnote ¹⁵ after the Aruna Shanbaug decision.

The 196th report recommended allowing passive euthanasia for both competent and incompetent patients. However, despite acknowledging the recognition of ADs in other countries, the report resisted recognising their legal validity, citing “complex legal and factual issues”, such as subsequent changes in circumstances, or changes in technology, and problems of proof in the event of a subsequent withdrawal.Footnote ¹⁶ The Law Commission, in the 196th report, seems to have been greatly influenced by Justice Munby’s considerations in HE v. Hospital NHS and Another,Footnote ¹⁷ which centred on the efficacy of ADs (in this case in the context of blood transfusions) and a test of their applicability being a matter of proof.Footnote ¹⁸ The commission seems to have been concerned about the problems of proof in oral ADs, particularly given the level of illiteracy in India. For policy reasons, it thus recommended that ADs not be legalised in India, fearing the huge amount of litigation stemming from conflicting evidence, even if the ADs were in writing.Footnote ¹⁹

The 241st report of the Law Commission upheld the findings of the previous report. Interestingly, some of the questions concerning the subsequent withdrawal of consent, for example, which are found in contemporary discussions of ADs, were cited as reasons for not accepting their validity. In light of these findings, Section 11 of the draft bill arising from the two reports (i.e. the 2016 draft Treatment of Terminally-Ill Patients (Protection of Patients and Medical Practitioners) Bill) considered ADs to be invalid.

6.2.4 The Common Cause Decision (2018)

The Common Cause case, which was referred to the Supreme Court with a request that it declare that the right to life includes the right to die with dignity and legalise ADs, dealt more generally with the end-of-life context in India. The court also considered the question of legalising ADs in the case. In light of international developments, in India too there had been repeated requests for the legalisation of euthanasia, many of which ended up on the doorstep of the Supreme Court. Advocacy groups had been writing about euthanasia and ADs and recommending legal sanction for the latter.Footnote ²⁰ Everything changed in March 2018, however, with the court’s ruling in Common Cause, which was heard by a five-judge bench comprising Justices Dipak Misra Chief Justice of India (CJI), Khanwilkar, Sikri, Chandrachud and Bhushan.

In the Common Cause decision, the court upheld the arguably problematic distinction between active and passive euthanasiaFootnote ²¹ and legalised passive euthanasia, which it understood as the withholding or withdrawal of life support, not as physician-assisted suicide. In relation to ADs, Justice Sikri stated that the fear of misuse cannot be grounds for a blanket ban on ADs.Footnote ²² The Court laid down a set of detailed guidelines, discussed later, which are the law in place until the Indian Parliament enacts legislation. The guidelines provide for a rather long procedure in the event that the executor of an AD develops a terminal or incurable illness.

In this case, we find at least a prima facie reiteration of the right to decisional autonomy in the five-judge bench decision, particularly Justice Chandrachud’s judgment.Footnote ²³ Even the CJI, just before giving the guidelines for ADs, quoted John Rawls from his book Political Liberalism, wherein he emphasises choice, holding that between best interests and decisional autonomy, it is decisional autonomy that triumphs.Footnote ²⁴ It could be said that the legal milieu for the recognition of ADs was established by the Supreme Court’s increasing focus on individual decisional autonomy, as is highly visible in the recognition of the right to privacy in 2017 by a unanimous decision of a nine-judge bench of the Supreme Court in Puttaswamy.

There has also been acknowledgement of the role that the right to privacy played in the court’s reasoning in the Common Cause case. Justice Sikri, for instance, when formulating the questions concerned states that “with [the] right to privacy now a fundamental right under Article 21 (right to life), the principle of self-determination in India stands on a higher footing than before”.Footnote ²⁵ In the Puttaswamy decision, which was quoted in Common Cause, Justice Chelameshwar said, “An individual’s right to refuse the life-prolonging medical treatment or terminate life is another freedom which falls within the zone of the right to privacy”.Footnote ²⁶ Hence, the domain of privacy has been extended to include end-of-life decisions.

6.3.1 PADs under the Mental Healthcare Act 2017

The recognition of PADs under Section 5 of the Mental Healthcare Act 2017 provides analogical strength in favour of the legalisation of end-of-life ADs. For example, Justice Sikri uses PADs in arguing against the Law Commission’s concerns that ADs might be misused, relying on the safeguards in the PAD regime as an example of the safeguards that could be implemented to prevent abuse.Footnote ³³

Under the procedure for PADs, the power to determine the manner of the directive’s implementation is delegated to the Rules and Regulations of the Mental Healthcare Act 2017, of which Part II deals with the same. An AD format is given in Form CR-A of the Mental Healthcare Rules 2017, made under the Mental Healthcare Act 2017. The AD is to be signed by two witnesses, and is to be registered with the Mental Health Review Board of the jurisdiction in which the person resides. There is also an obligation to make the AD available online within 14 days. According to Form CR-A, a person can appoint two or more nominated representatives in order of precedence to make decisions about mental healthcare treatment in the event of incapacity. In some regards, this stipulation renders a PAD more akin to a power of attorney than to an AD. There is also a need for certification by a medical professional that the capacity to make decisions exists at the time the PAD is made.

Whilst there appears to be no apparent basis for distinguishing between end-of-life ADs and PADs on the issue of capacity, there is an established procedure for assessing capacity under the Mental Healthcare Rules 2017, unlike under the aforementioned guidelines laid down by Common Cause. The determination of the capacity to consent for patients with mental illness is to be made by the expert committee appointed by the Central Mental Health Authority under Section 81 of the Mental Healthcare Act 2017.Footnote ³⁴

Although PADs were used to provide analogical support for the legalisation of end-of-life ADs in that decision, as discussed previously, there remain crucial differences between the procedures and powers concerning PADs and end-of-life ADs. For example, compared with an end-of-life AD, a PAD confers a duty upon the medical caregiver to follow the directive.Footnote ³⁵ Less discretion thus lies with the medical practitioner. The AD format is also specified by the Mental Healthcare Rules 2017, which constitute a much more detailed legislative scheme.Footnote ³⁶

The media attention surrounding euthanasia and ADs has been greater than that surrounding PADs. Because the legalisation of PADs generated little controversy, discussion or resistance in India, they may well have been easier than ADs to legislate. The law under which they were legalised, the Mental Healthcare Act 2017, received cross-party support, as it recognised the legal right to mental healthcare.Footnote ³⁷ There is also a greater role for the family under the PAD regime, which will be discussed in the next section.

It thus seems that whilst ADs in the psychiatric and end-of-life contexts both aim to provide individuals with the opportunity to exercise autonomy in relation to decisions about medical treatment if and when they lose capacity, the respective regimes are very different, although the differences (in relation to the assessment of mental capacity or enforceability, for example) do not appear to be based on principle.

6.4.1 The Role of the Family

Illness in India, scholars have argued, is a family matter, and hence the role of the family is the most crucial for healthcare decision-making.Footnote ³⁸ The role of the family is central in the epics that scholars often cite as creating the landscape for Indian ethics.Footnote ³⁹ In an interaction between the Indian legal landscape through personal laws and Hindu religious-cultural practices, the law itself allows for the fictional unit of the “Hindu Undivided Family”, particularly in the context of the ownership of family property and inheritance under the Hindu Succession Act 1956.Footnote ⁴⁰ Under this system, the eldest male of the family, that is, the father, husband or eldest son, has traditionally been considered to be the Karta or “manager” (or, by extension, the decision-maker). The definition of Karta has now been extended to include females.Footnote ⁴¹ Family lies at the heart of Indian society, and yet the treatment that ADs afford it is bittersweet. Under the Supreme Court guidelines, doctors have a greater role to play than family members. Nevertheless, the JMFC is to inform the family of the person making the AD that such a document has been made. How is one to interpret this apparent discrepancy?

Given the country’s huge young population and cultural norms against the abandonment of one’s parents in their old age, one would expect the family to play a crucial part in this context in India. Yet, the legal battles around who gets to make a decision on behalf of the patient in the case of ADs have centred on the roles of the courts and doctors. In light of the importance of the family in other law and ethics contexts, as demonstrated in the way decisions are to be made by the head of the family, and legal recognition of the Hindu Undivided Family, one can only wonder at the lack of any role for the family in the end-of-life context.

It is possible that the situation arises from concerns over the potential for abuse in that context. Such concerns are apparent in court decisions pertaining to ADs, as well as in the aforementioned Law Commission reports. Hence, one can argue that the main reason for the resistance is the potential misuse of ADs by family members. In light of this scepticism of the role of the family, the state or third-party agencies perceive themselves as having a crucial role in preventing such abuse and preserving the autonomy of the individual, even though that perception may be unwarranted given the lack of empirical evidence on such abuse.

Scepticism about the role of the family is also reflected in the Aruna Shanbaug decision. The hospital and her caretakers were considered to be the next of kin rather than Aruna Shanbaug’s family or even Pinky Virani, the humanistically intentioned person who filed the case. It was because of the decision of the staff and nurses at KEM hospital who had looked after Aruna Shanbaug in a persistent vegetative state for 37 years that she was kept on life support.Footnote ⁴²

In the Aruna Shanbaug decision, the role of the family in giving consent on behalf of the patient was also resisted. Justice Katju, for instance, said the following:

Justice Katju discussed the appointment of a guardian in the Aruna Shanbaug case. He cited chapter IV of the 196th Law Commission Report, which considers the family and relatives to be just one consideration, placing power with the High Court as parens patriae. As with the High Court’s authority to make decisions regarding the withdrawal of life support, there is strong jurisprudence on the role of the state, particularly that of the High Court as parens patriae. Somehow, the Supreme Court under Common Cause and Law Commission of India under the reports seem to view themselves as the protectors of individual patients from their own families. Under the new procedure resulting from the Common Cause case, the focus seems to have shifted from the role of the High Court to that of medical practitioners and the JMFC, with the family still placed in a secondary position. The sentiment remains similar: to protect the individual from his or her family.

Interestingly, concern over the potential for abuse is less evident in the PAD context, in which there appears to be a larger role for the family. In the PAD regime, for example, a relative or the caregiver of the person concerned can make an application to the hospital board to review, alter, modify or cancel the AD.Footnote ⁴⁴ The greater role for the family in this regime may be the result of dialogue with stakeholders, who expressed scepticism about PADs. The Standing Committee Report on the Mental Healthcare Bill, which resulted in the Mental Healthcare Act 2017, attributes PADs to the Convention on the Rights of Persons with Disabilities, to which India has been a signatory since 2007.Footnote ⁴⁵ In the report,Footnote ⁴⁶ which, as noted, resulted from dialogue with stakeholders, there is scepticism regarding the creation of PADs, as well as resistance on cultural grounds, namely, that they may be in conflict with the role of the family in decision-making in India.

Whilst there has been no similar dialogue with stakeholders in the end-of-life context, and it is therefore unclear whether a similar concern would be raised, the foregoing discussion of the importance of the family in Indian culture and other legal contexts suggests that despite court scepticism about that role, there may be cultural reasons for the family to be given a larger role in the context of end-of-life ADs.

6.4.2 Autonomy, Pain and Desire: The Role of Religions

Law operates in the context of its society, which, in the case of India, brings together the peculiarities of that society owing to its highly diverse, pluralistic nature. In fact, doubts have been expressed in the past concerning whether a unified “Hindu” bioethics can exist given the plurality of Indian culture. The management of patients at the end-of-life is also influenced by religious and cultural beliefs, although there appears to be little discussion of personal will and desire in the context of end-of-life treatment.Footnote ⁴⁷

For a significant number of people belonging to the Hindu, Buddhist and Jain faiths, amongst others, there is the concept of an ongoing cycle of birth, death and rebirth. In these traditions, societal existence, or Samsara, sees its outer boundaries in the pursuit of the attainment of Moksha or Nirvana. According to this view, death is not the end, and there are many ideas pertaining to renouncing all material desires, and eventually the body itself.

Interestingly, the judgment of the CJI and Justice Khanwilkar in Common Cause holds that although Buddhism, Jainism and Hinduism are against euthanasia in the strict sense, the concept of the “good death” in each of these religions can be seen as reflecting the concept of dying with dignity.Footnote ⁴⁸ More broadly, death can be seen within Indian religious tradition and philosophy as a union with the Divine, the greater Self.Footnote ⁴⁹ In the Hindu epic of The Mahabharata, Bhisma, who had decided to remain celibate owing to various circumstances, was given in return the boon of Iccha-mrityu, or “the death of desires”, meaning that he could choose the time of his death “as per [his] desire”. This example demonstrates that a good death is considered the highest of rewards.

What about alleviation of the suffering of the Self? As per the famous bhajan Bhaja Govindam quoted at the beginning of this chapter, whilst the individual is to embrace pain, it is left to God to save the individual from pain and suffering. In Hindu and Buddhist philosophy, suffering is considered to be an eternal truth about life, to the extent that it is one of the noble truths of Buddhism. Hence, the desire to avoid pain is not celebrated. Pain is to be embraced and may depend on past-life deterministic forces such as karma, and freeing oneself of pain is not sufficient justification for bringing about death. Accordingly, the rejection of life-sustaining treatment to alleviate pain and suffering, which will in turn bring about the person’s death, would not be seen as in line with these religious beliefs.Footnote ⁵⁰

6.4.3 The Medico-cultural Context

In ancient India, physicians took an oath after completion of their studies. One of the commitments they made was that they would not try to prolong life in end-of-life situations or resort to what is known today as futile treatment.Footnote ⁵¹ In the West, however, medicine evolved on different principles. The original Hippocratic oath placed two important conditions on the practice of medicine. The first was to disallow euthanasia, and the second was to never conduct an abortion, with no exceptions.Footnote ⁵² In India, the Indian medical tradition was replaced by an interpretation of the Hippocratic formulation of doctors’ duties in ways that stress the need to act paternalistically towards patients. Doctors in India, who may even have been favourably inclined towards self-determination at the end-of-life, were taught that life has to be preserved, at all costs if necessary.

The greater role of doctors and medical paternalism also have roots in Ayurvedic systems, where great faith is reposed in the medical community despite the issues of medical malpractice and institutional problems concerning hospital infrastructure. One can see a reflection of Ayurvedic ideas in doctors being seen as a rebirth of Dhanvantari, the lord of medicine. In Ayurvedic systems, there were codes of ethics, which can be found in the Sushruta Samhita and Charaka Samhita. The Charaka Samhita, for example, makes reference to autonomy and consent, although preference is afforded the physician in the case of, for instance, withholding the truth from the patient in his or her best interests, as opposed to full disclosure in order for him or her to make an informed decision.Footnote ⁵³ Although medical paternalism and a larger role for doctors may in some jurisdictions result in greater reluctance to accept ADs (as individuals would presumably expect to defer to doctors about decisions at the end of life), this has not been the case in India. Instead, preference for the role of the physician in overseeing and enacting a bureaucratic process of reviewing the place and applicability of an AD has interestingly been accepted as a key component of the AD regime laid down by the Supreme Court, wherein medical practitioners have the greatest say in decision-making. This situation may well result from the fear of abuse by family members, as discussed previously, but is also consistent with the Indian medico-cultural context.

6.5.1 Demographics

We conducted an online survey using Google Forms. The survey collected information from individuals who were internet users and had obtained at least a graduate degree in any field. Our respondents do not represent the Indian population in any way; rather the population we selected was a highly educated, elite group of people.Footnote ⁵⁵ Our final sample of 411 responses reflected a healthy mix of male and female respondents from the fields of medicine, science, the arts, engineering and law, with a mean 18.16 years of work experience. The responses were sorted by gender, qualifications and field of education for detailed analysis using simple statistical measures.

6.5.2 The Findings

In relation to their awareness of ADs, only 115 (27.9 per cent) of the respondents reported having some knowledge of ADs, meaning that 296 (72.1 per cent) had no such knowledge. Further questions about ADs were therefore not directed towards those with no knowledge of the subject matter. Amongst those who knew about such directives, 100 reported having thought about making them, but only 21 (18.2 per cent) had actually done so. Taking all respondents as a whole, only 5.1 per cent had prepared an AD.

We analysed the knowledge of respondents from the medical profession separately. Of the 147 medical professionals, 92 (62.6 per cent) had heard of ADs, whereas 55 (37.4 per cent) had not, and only nine (7.8 per cent) had actually made one. One question that we asked all respondents was whether, if they were unable to voice their preference about medical treatment, they would like to nominate someone as their proxy. We received a response from 226 respondents. Most (133, or 58.8 per cent) said they would want their spouse to act as their proxy. Seventy-one (31.4 per cent) chose their parents, and 18 chose family or their children. Only three said they would like a doctor to make decisions on their behalf if they were unable to do so. It is alarming that the doctors in our sample were only slightly better informed about ADs than our other respondents; roughly half were clueless.

Several findings emerge from these data. First, despite all of the benefits of ADs, not all are inclined to make them. Second, considerable effort is required to make ADs acceptable. Our survey revealed that although most of our respondents wanted autonomy over their medical treatment and the way in which they were treated, very few had an understanding of ADs, their legality or the process of making them.

The inference that can be drawn from our survey is that the likelihood of a well-educated Indian making an AD is rather slim. An added worry is that there appears to be little knowledge of ADs amongst medical professionals. Thus, the likelihood of a patient who has prepared an AD being treated by a medical practitioner with knowledge of ADs is remote. This situation, added to the fact that responsibility lies with the medical practitioner, makes AD implementation a challenge. There is thus an urgent need for a campaign by governmental and non-governmental organisations to spread awareness of ADs, their advantages and the need for them. The Indian courts seek legal grounding in other common law jurisdictions, and yet ground-level adoption is often neglected. Whilst the governments of other countries have put huge effort into popularising ADs, no such effort has been seen in India. Without knowledge of ADs, they will remain an unrealised right.