The Ethics of Brain Death: An Islamic Perspective

Bilal Arshadullah is a biology major and biotechnology minor and a 2023-24 health care ethics intern with the Markkula Center for Applied Ethics at Santa Clara University. Views are his own.

 

In 2013, Jahi McMath’s story shocked the world, as she was declared dead by neurologic criteria, and then proceeded to live another four years as a comatose patient. Her story led many to question the definition of brain death, including Muslim physicians and bioethicists who were already uneasy about how the existing definition related to Islamic beliefs. The term “brain death” was proposed in 1968, defining the point where the neurological criteria for human death is met by a patient’s condition. The neurological criteria for brain death according to the American Academy of Neurology states: “Brain death is declared if a person has a catastrophic brain injury, has no possibility of recovering any brain function, is completely unresponsive, does not demonstrate any brain or brainstem function, and does not breathe on their own.” Unfortunately, for nearly 3.5 million Muslims living in the United States, determining brain death is not quite as straightforward as ticking a few boxes. 

According to the Qur’an (the Islamic holy scripture), death is categorically defined as the nafs (“soul” in Arabic) departing from the body. However, no physiological markers of the departure are described. Traditionally, it was easy to determine when someone’s soul left their body–their breathing would stop and their heart would cease beating. Following death, multiple Islamic responsibilities get put into effect, such as the janazah (funeral) prayer, distribution of inheritance, and a waiting period by the widow prior to being remarried, which is why certainty in declaring death is so important. Now that respiratory and circulatory functions can be maintained by external devices though, death is no longer as clearly defined. As a result, the ulama (Islamic scholars of religion and law) have presented opposing opinions about what the right course of action is in situations of brain death. Does the soul depart, and therefore does life end, when the brain dies or when the body does?

Differing Perspectives

Many Muslim-majority countries and congregate Islamic organizations have worked to address the issue of brain death. The ulama have been unable to definitively determine which definition of brain death most aligns with the fundamental tenet that death occurs when the nafs departs. However, over the past few decades, three equally viable perspectives have emerged.

The first perspective, seen as the most “traditional” view, is that death only occurs when circulatory and respiratory functions fail. This is described as a “permanent, irreversible cessation of all biological functions that sustain a living organism.” This view is based on the belief that there are very few, if any, reliable physical indicators for the moment where the nafs leaves the body. We are only able to conclusively say that the nafs is not in the body when the body begins to irreversibly decompose, when the patient’s breathing and heartbeat stops. 

The second perspective describes brain stem death as it is commonly seen in Western health care, stating that death can be declared when a specific neurologic criteria is met. This standpoint comes from the belief that because the nafs is intertwined with personhood, certain physical and mental markers can serve as indicators for the nafs’ presence. Such markers include voluntary movement and higher brain functioning. A lack of these markers would suggest that the soul had departed, even if cardiopulmonary functions were artificially maintained. Scholars of this view emphasize that brain stem death can only be declared by experienced, specialized doctors who have found that brain function cessation is irreversible and that the brain has started to disintegrate.

The third perspective presented by the ulama introduces a gray area between the binary of life and death. In this view, brain death is an in-between state where life is unstable. This perspective is held by scholars who believe there are physical and mental markers of the nafs, but aren’t necessarily ready to give up the traditional criteria for death (ie. cardiopulmonary failure). In this “unstable life,” scholars say that life-sustaining treatment can permissibly be withdrawn, but death cannot be declared until breathing and heartbeats cease. This perspective doesn’t specify when exactly the nafs departs the body, instead focusing on the practical measures to take when a patient is in this transitory state.

Every Muslim can espouse one of these perspectives, some combination of the three, or none of them at all. To accommodate this range of beliefs, physicians should prioritize open communication with the patient’s family to avoid inflicting more emotional and spiritual trauma.

The Case of Ezadin Mahmoud

In 2014, a 13 year-old Muslim Somali boy named Ezadin Mahmoud was practicing backflips with his brothers in Portland, Maine, when he landed on his head and severed his brain stem. The medical team at Maine Medical Center found that his pupils were unreactive, his breathing was entirely dependent on a mechanical ventilator, and there was no blood flow to his brainstem. Tragic as it was, they ruled Ezadin dead and drew up a death certificate. Ezadin’s father was “upset…to see the already-prepared death certificate, finalizing his son’s death in print, when he had yet to reach a conclusion about what had happened.” He saw that Ezadin’s heart was still beating and that Ezadin was still breathing, so he wasn’t sure whether Ezadin’s soul had left his body yet. The family asked for time to think, and the medical team reluctantly gave them five days. A Muslim volunteer medical advisor arrived to help the family navigate these unfamiliar boundaries. Ezadin’s family took three days of ijtihad (rigorous examinations of the Qur’an, Islamic ethical and legal precedents, and individual critical thinking) before they found a way to proceed. They decided that they would ask the doctors to scan his brain one more time for any signs of life, and if there were no changes, they would take him off of life support. Before they could, Ezadin’s heart stopped beating.

Ethical Issues

Ezadin’s father struggled to accept that his son was gone because the Western idea of death that the medical team was working under was not aligned with his Islamic beliefs. While there are similarities between Western bioethics and Islamic medical ethics, there is an unparalleled emphasis placed on spiritual health in Islamic ethics that is nonexistent in Western frameworks. Muslims believe that physical, mental, and spiritual wellbeing are intertwined, and that each fortifies the others. While physical interventions are unarguably important, spiritual remedies have an equal role in helping a patient heal. Some Muslims believe that sudden injury is a test from God, so their spiritual interventions might include having family members recite Qur’an or speaking with an imam (Muslim community leader). Even if the doctors’ assessment is that the patient will not regain consciousness or normal functioning, spiritual actions are taken to help the patient and their family find peace before the nafs departs. If the patient’s family is denied the ability to facilitate spiritual healing as a result of a Western medical environment, they might feel that their loved one’s treatment was insufficient.

Unclear understandings of Muslim families’ values and beliefs can also greatly reduce their autonomy over health care decisions, and leave them with more distress about their loved one. This lack of autonomy results in clashes between the doctor’s medical assessment and the family’s religious beliefs, breaking down the physician-patient relationship over time. The doctor might feel like their credibility is being undermined, while the family may feel like they’re going unheard and, subsequently, lose trust in the doctor. This breakdown prevents the family from making a well-informed decision and ultimately decreases the family’s agency in caring for their loved one. Studies have found that worse physician-patient relationships have been associated with poorer health outcomes. Through the lens of narrative ethics, which focuses on the patient’s personal identity through their life story, doctors could explore the personal and religious background of their patient and their family to better understand why they might be supporting a certain decision. If, for example, a family believed that their loved one with a severed brain stem was in a state of “unstable life,” it would be prudent for the doctor to explore the life events that led them to that belief. Doing so would allow the doctor and the family to make treatment decisions together that best aligned with all of their values.

Solutions to Improving Cultural Competency

Muslims have been painted as the common enemy of the United States post-9/11 and as result of this harmful and baseless narrative, many of the religious considerations Muslims must make in health care situations are overlooked. Regarding brain death, we’ve seen that there is no broad Islamic consensus on when to declare death or how to treat patients in that situation. Instead of acting unilaterally, physicians should keep an open dialogue with the family to see what their views on brain death are, what resources they might need, and how best to support them. The physician’s role in explaining the patient’s medical situation and the risks of specific interventions is especially important in making sure that the family is able to make an appropriate decision for the patient that aligns with their Islamic beliefs and values. Oftentimes, families may request more modesty or privacy for the patient, health care providers of the same gender, or to speak with an imam about actions to take. Most importantly, physicians should ensure that family members have enough time to evaluate their personal and religious beliefs (along with the patient’s beliefs) and make a well-informed decision for their loved one. By implementing these changes, we can ensure that Muslim Americans are treated with considerate, competent care that aligns with their beliefs and values.

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