16.2.1 Healthcare Context: Lessons for the End of Life

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

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

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

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

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

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

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

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

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

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

16.2.2 Advance Directives

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

16.3.1 Role of the Family

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

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

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

16.3.2 Difficulties Concerning Discussions about Death and Dying

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

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

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