A Saudi Family Making End-of-Life Decisions in the PICU

In this “Ethics Rounds,” physicians must decide how far to go in respecting the wishes of a Saudi Arabian man whose infant is dying in the PICU. The man requests an approach to end-of-life decisions that is deeply rooted in both Saudi culture and the tenets of Islamic bioethics but at odds with prevailing US law and bioethics. We asked 3 physicians with expertise in cross-cultural issues to comment on the issues raised by this case. Dr Aasim Padela is an emergency medicine physician and a fellow in the Program on Medicine & Religion at The University of Chicago. Dr Sadath Sayeed is a neonatologist at Boston Children’s Hospital and on faculty in the Division of Medical Ethics at Harvard Medical School. Dr Maryam Naim is a pediatric intensivist at the Children’s Hospital of Philadelphia.A 2-month-old boy was found unresponsive in his crib after his mother heard him choke shortly after feeding. His parents drove him to the emergency department, where he was apneic and pulseless. He had return of spontaneous circulation after 30 minutes of cardiopulmonary resuscitation and was transferred to the PICU. On physical examination, the infant has intermittent respiratory effort over the ventilator, no withdrawal from painful stimuli, and no pupillary response to light. Over the next few days, his neurologic examination remained limited to intermittent seizures and irregular respiratory effort. There are no other signs of brainstem function on serial examination.The parents are young and had recently emigrated from Saudi Arabia. The mother is wearing a full black burqa exposing only her face. She speaks no English. The father is wearing a tee shirt and jeans and speaks fluent English.A meeting is scheduled with both parents, the neurologists, social workers, PICU team, and an Arabic interpreter to discuss the prognosis and plans. Before the day of the meeting, the father meets alone with the attending physician. He tells her that he understands his son’s dire condition and bleak prognosis and asks that the physician discontinue the ventilator and let his son die but not tell his wife that they stopped the ventilator. She will, he says, accept the fact that the boy has died, but knowing the details would be devastating to her. Is it permissible to stop the ventilator in this case after discussing it only with the father?Ethical dilemmas, and ethical choices, are socially produced. They are the products of context-specific interpretations of power dynamics, social practices, and cultural values.1 The field of bioethics tries to find areas of overlap among different moral traditions. By using this approach, we often find that peoples’ choices and preferences and values are often understandable even if we do not agree with them. So we must ask (1) why the father suggests his course of action, (2) whether it is appropriate within the family’s ethical framework, and (3) whether we can defend it ethically within our value system.This case has several morally relevant points: (1) our 2-month old patient is in a minimally conscious state with a relatively poor prognosis; (2) his family are recent emigrants from Saudi Arabia and can be reasonably assumed to be Muslim and thus informed, at least in some degree, by Islamic values; and (3) the father’s request to remove life support without informing his wife is controversial given the prevailing bioethical ideal within US culture of parental consensus when making such decisions. Importantly, in this case, the moral conflict over the father’s request lies not in his decision to remove life support but rather in his preference for providers’ to withhold information from, and potential decision-making authority allocation to, the mother.Several pieces of information are necessary to fully evaluate the father’s request. What is the exact boundary of his request to withhold information and his underlying rationale? Does he want providers not to engage in clinical prognostication with the mother or for providers not to relay to the mother the father’s request/decision to withdraw care? Does he want providers to lie?From a Muslim (separate from a normative Islamic tradition–based) bioethics perspective, there are several possible reasons that the father asks for the mother not to be told that life support is being withdrawn. He may feel motivated by a sense of responsibility to make the “tough” decisions within the family and shield others from the psychological distress of these decisions. This idea may be mediated by potential differences between the parents in their understandings of the clinical situation or acculturative factors (hinted at by the way the scenario is presented [eg, the differences in clothing and language proficiency between the parents]). In many Muslim societies, family unity is prioritized over individual autonomy. The father may be motivated by a desire to maintain family unity and feel a dual parental consent process may lead to familial discord.In my own research, I have found that many Arab Muslim families find the choice to withdraw life support to be especially burdensome within their cultural context. Family members are often paralyzed when faced with such a decision due to their fear of culpability in front of other family members, and in front of God, for withdrawing care upon a loved one.Moving from the Muslim cultural context to an Islamic bioethical perspective, several other factors are worth mentioning. It is possible that the husband is motivated, at least partially, by Islamic tenets. Seeking medical care is not always an obligation, and thus it is not always obligatory to continue life support, according to the majority of Islamic scholars.2,3 Hence, life support can be withdrawn when the burdens, social, personal, or otherwise, are considered to outweigh possible benefits. Furthermore, medical experts are given wide latitude in determining the risk/benefits of medical care. This “authority” allows for the advice of a “righteous” physician to be considered beyond reproach ethically and legally. Hence, the father here, in following medical advice, may be making a choice to withdraw life support that is consonant within the family’s Islamic tradition. In addition, in the Islamic tradition, he is accountable for his family, both legally in this world and ethically in the hereafter. He may feel that the responsibility and burden to decide are his solely.Given these religious and cultural considerations, some physicians who care for Muslim patients absolve family members of surrogate decision-making responsibility by couching the decision to withdraw life support as a purely medical decision. These providers do not ask families’ for formal consent to change code status. Rather, they use passive assent.Still, the question remains: is the father’s preferred approach tolerable to us as providers? I think that the best course of action should be to explore the reasons behind the father’s request and whether we feel that his actions are “ethically sound” according to the values of the family. My initial suggestion is for the health care providers, with or without ethics consultations, to inform the father of their medical ethics tradition and explain their moral, and potentially legal, concerns with his request. They could next offer to arrange a meeting with him, his wife, and, should the couple desire it, both an Islamic religious leader and a physician with insight into Muslim culture. Such a meeting would better elucidate his values and concerns. By entering into a dialogue, a middle ground may be found where neither side has to betray their moral positions all together.This case raises interesting questions that start at the clinical bedside but move to the meta-ethical. For the purposes of the initial discussion, I make 2 assumptions. First, I assume that the information conveyed to the father is that the child has irreversible, devastating global neurologic damage. Second, I assume that there is consensus among the medical teams that it is now appropriate to withdraw life-sustaining interventions. (In reality, we should recognize that it often takes weeks to be sure of the prognosis and to reach such consensus.)Given these assumptions, the ethical issue then moves toward consideration of what has popularly been termed “respect for cultural differences.” The case offers a predictable, even stereotypical, picture of a Muslim couple from the Middle East, with a male authoritarian figure prepared to make all decisions. It is likely that, in Saudi Arabia, the father’s request would be respected with little or no hesitation (certainly without the need for an ethics consultation). It is also plausible that, in Saudi Arabia, the mother might accept her son’s tragic death and, while suffering the expected grief, she would not, in the months and years that follow, ever question her own role in the decisions that were made. She also would not struggle with guilt or carry regret that she did not “do everything possible” to save her son. She would accept her role, just as the father would accept his.These are not trivial considerations. It may be that it is precisely these outcomes that our more paternalistic Saudi counterparts feel a moral obligation to promote.Finally, let us imagine that the father explains all of this to the PICU attending in the private meeting. He reminds the attending that he knows his wife and their culture better than do the team of US specialists. He even offers to bring in a female physician friend of his who works in the Middle East as a consultant.Even with all these assumptions, I suspect that many clinicians and pediatric bioethicists in the United States would not abide by his wishes. We would insist that the case be dealt with by using the values of our (US) modern legal tradition and professional clinical ethics. We would assert that the wife has a right to participate in medical decisions that the husband cannot take away.So, when the rubber hits the road, we resist the temptation to yield to the persuasive considerations that the father has put forward. We do so, we tell ourselves, because even if the father is right and the mother might be better off, we worry about the broader moral implications of endorsing an idea of parental moral standing that does not finally rest on equality for each individual.This scenario returns us to the challenge of what we might really hope to accomplish when we express a need for maintaining “cultural sensitivity.” Beyond listening to our patients’ parents in a way that sincerely acknowledges different values (not unimportant), do we really offer respect for those values? What might respect look like to the father in this case? Ultimately, it can mean only one thing: to do as he asks, for the reason that he asks, and accept that his love and concern for his wife lead him to different conclusions about his, and our, duties and obligations. If we are unprepared to go this far, then we need to accept that, when our value systems truly clash with those of our patients and families, we probably do not show much cultural respect. Instead, we assert universalism and insist that our own values are the ones that should be universalized.It is important to understand the context of this father’s request. To do so, it is necessary to understand gender roles in Saudi culture, which differ significantly from those in Western culture. Traditionally, women in Saudi Arabia live in a protected environment and are not part of decision-making in their family structure. Saudi women always have a male “guardian.” When unmarried, this is their father. After marriage, the responsibility of guardianship falls on a woman’s husband. The guardian is responsible for all decision-making for the woman, including decisions about whether she will be allowed to go to school, marry, or travel. The guardian also gives consent on her behalf for medical procedures.Guardianship is closely tied with the concept of “namus” relating to a woman’s modesty and honor. Namus is a cultural concept and is an important asset for a woman in Saudi society. A woman must maintain her honor and that of her family; to maintain this honor, women cover themselves from head to toe and do not associate with men who are not related to them. This practice is called “khalwa” or “purdah.” If a woman performs a “dishonorable” act such as associating with a man who is not in her family, serious repercussions can occur. Not only can the woman be shunned from society but, in rare circumstances, an “honor killing” can occur in which a man kills a woman who performed a dishonorable act to maintain the family honor.Legally, in Saudi Arabia, children belong to their fathers, who have sole guardianship. Although these practices are viewed by many in the Western world as violations of women’s rights, they are widely accepted by the majority of women in Saudi Arabia.In conclusion, it is important for the attending physician to understand that the father of the infant is trying to protect his wife by excluding her from the decision-making process, which is a Saudi cultural norm.The physicians decide that a family meeting is required and that the mother must know about the discussion to stop the ventilator. The medical team, including an Arabic interpreter, meets with both parents. They explain that the infant is only being kept alive by the ventilator, that his brain is injured beyond recovery, and that he has no chance of meaningful survival. The physician recommends that the ventilator be stopped. She asks the parents if they have any questions; neither parent does. The physicians and interpreter leave the parents alone in the room to talk together.A few minutes later, the father comes out of the room alone. He tells the physician that his wife understands that the infant is dying and will die after they leave the hospital. He says that he and his wife will leave the hospital now and do not want to be there when the infant dies. He asks the physician to disconnect the ventilator after they are gone. The physician wants to have a conversation with the mother to be sure that she agrees and understands. Stating that his wife is devastated by the loss of their son, the father pleads with the physicians to let them both leave without further discussion and to withdraw the ventilator after they are gone.Is it permissible to withdraw the ventilator based on the father’s assurance that the mother agrees? If her assent is required, what are the reasons? If her assent is not required, why not?After the family meeting with the interpreter, we can reasonably assume that the mother heard the facts and recommendations about her son’s condition and care. However, we cannot presume to know how much she understood or what her ultimate feelings are about the situation. Does our allegiance to a certain ideal of parental moral standing now obligate us to override the father’s latest request to simply let them be? Is it permissible to risk deep cultural offense for the sake of preserving our sense of ethical is where the case us beyond the to the can we know that our moral about parental roles and duties are to those of the moral that into clinical ethics truly or are they the of social and cultural and to certain of religious Before we further upon the private of this family, we to these about whether this mother is more about the of women in a society such as Saudi Arabia. I a in a of gender I fear such a to be one of to the father’s wishes in this case. are in my sense that certain moral values to the equality and of each individual are I also recognize that I really do not know if the mother wants a more role in the decision-making in this case. It is all to her in a way that only my about how her must be I may be her to live her life as she rather than her by that she live as I would have her are in This for on my as a as an ethics and as a about how each of us to one would abide by the father’s request in this case, because I not that my about parental moral standing that I risk the and psychological that might to this young I also not that my of moral value are and to those of this family that I to the the of a child is this and this father’s and not We go on to the next case, and they live with that we an role in that the mother her of the of life support to more than to our Western code of medical it is not permissible to stop the ventilator without from the information and decision-making from her is a of her parental autonomy. It her from in decisions that her of what is in the best of her this woman has been in a different culture where decisions are by male this case, her She in the family meeting and has heard about the prognosis of her The physician team should to with the father and talk to the mother and ask her whether she wants her husband to make these important decisions. This could be by a female of the that a or attending the father for to talk to the mother on her a female talk to the mother on her own the Saudi cultural tradition of The female physician could then the of the situation and whether she wants to decision-making to her husband. If she does not want to participate in this request should be by the physician is that the patient care team a family meeting with an Arabic interpreter, presented the clinical scenario to both parents, and allowed both parents the to ask questions and then the father agrees with the to withdraw life this I would that the medical ethical responsibility has been and they should in life the father a desire on behalf of both parents to not be when the support is to raises no ethical a loved one die is and if desire to not these of and psychological I find no with from the of physician a physician could such a may that the parents should be at the bedside when the of death that being would offer and the A of a who recommends that we should offer the family a chance to make their loved death a family where the physical of family the from this world to the hereafter. Such a course has and has within a Muslim cultural where family members often for or from the to the plausible Islamic of the role for families is also By this one should not a morally action to a moral obligation to There are some Muslim families who find withdrawing life support for those who are minimally conscious or brain to be do not a religious for brain some families to be from the bedside when life support is upon their loved one for psychological and moral I would not one approach over the other but simply the to the family and honor their more issue is whether it is necessary to a conversation with the mother to be sure that she agrees and I assume that the attending physician is about both her and her with the decision. might ask whether this is an appropriate concern for her or whether it the of Muslim women as and I would that the mother does not have to further She to assent to the decision by her husband. This decision is in with medical the mother does not offer any benefits. it could the between that family and the health care providers by a for their culture, their and their moral is appropriate to be for the autonomy. even within an an individual can to make decisions on his or her In this case, the of respect for should be considered to that of respect for autonomy. this framework, the providers would this family their own cultural and ethical value rather than a Western cultural with and on This in moral might a and that is to practice and does not the of a and need to with patients to find values and that us to ethical of medical When we do so, we may find that our of the and our may be the even if the process in there may are rooted in culture. We to think of our way of as the only way because it our own cultural and When with a different culture, we have to go to and ask we do the way we Is it because we are that our way is the right way for all in all at all is it because our way works for The way we these questions how we to for cultural I worry about of moral values in such as this about life support are in world to have been from a moral, or cultural I think to other is In this moral and ethical we need to from one