15.2.1 Governance Structure

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

15.2.2 Healthcare Structure

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

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

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

15.2.3 Laws and Legislation

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

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

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

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

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

15.3.1 Influence of Religion on Legislation

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

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

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

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

15.3.2 Economic, Social, Cultural and Medical Landscape

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

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

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

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

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

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