When Medicine and Faith Define Death Differently

In Portland, Maine, a counselor helps the city’s Somali Muslim community navigate the ethical complexities of U.S. health care.

Thirteen-year-old Ezadin Mahmoud was pronounced dead on August 27th, 2014, in Portland, Maine. His heart was beating and his breath was still warm, but his brain stem had been severed. He had been practicing backflips with his brothers when he landed on his head. If radioactive tracers were inserted in his veins, it would show his blood rerouting around the swollen brain stem, like water moving around a dead log. One might note how his pupils failed to respond to light. If removed from the ventilator, his breathing would slow to a halt.

The doctors broke the news and wrote the death certificate, a tragic but closed case. However, Ezadin’s father, Mahmoud Hassen, remained unconvinced of the doctors’ verdict. In Somalia, where Ezadin’s parents grew up, death was easier to define: No heartbeat. Breath that does not return. Skin that turns pale, then purple. Death was something you could see and feel.

Like any parent, Mahmoud did not want to believe that his son was dead, but he also was not sure if taking his son off life support was in accordance with his faith. He was dead according to the doctors, but was he dead—had his soul (nafs) departed—according to Islamic law?

The family asked for some time to think it over. The doctors complied, granting them five days, but warned that it was not productive to keep their son on life support. To the physicians at Maine Medical Center, this was not a complicated death. It upset Mahmoud 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.

The news of this tragedy spread quickly through Portland’s Muslim community, composed largely of Somali refugees. Soon Ahmed Abdirahman, a medical counselor and the director of the Maine Muslim Community Center, appeared at the hospital with two imams to guide the family through this process. They were all prepared to sit in the waiting room until they had reached an understanding of Ezadin’s condition, a task Abdirahman had taken on many times before.

Abdirahman, a respiratory therapist in the intensive-care unit of Portland’s Mercy Hospital, is called into local hospitals three to four times a week for cases where members of Portland’s Somali community need help navigating the complexities of the U.S. health-care system. Often, his role as volunteer medical advisor involves explaining patients’ options for treatment, working through confusion around what it means to die under Western care, or helping them to reconcile certain procedures with Islamic tradition.

The first wave of refugees came over to Maine from Somalia, which is predominantly Muslim, after the outbreak of the Somali civil war in 1991. The country’s health-care infrastructure is severely underdeveloped, meaning that many members Portland’s Somali community of the community are unfamiliar with the ethically complex medical decisions—particularly around end of life treatment and surgeries—that can come with being a patient in the U.S. health-care system.

Abdirahman summarized the general philosophy in Somalia around death as: “So you live as much as you can live on your own, and when you have to go out, you just go out”—a much more clear-cut view than the gray area between medically assisted life and death.

One of Abdirahman’s major roles as a counselor is to quell patients fears around surgical procedures. “Surgery is a big deal. Everyone is afraid of it,” he said. In the past decade, he’s witnessed two preventable deaths in women delaying or refusing a Cesarian section. Since c-sections tend to require a quick decision, Abdirahman often doesn’t have time to adequately counsel patients: “It will be very hard to convince her. She will say, ‘My mom had 10 children. She never had a c-section. Why do I have to?”’

Another element of his job as a counselor is working with doctors to train them in traditional Somali beliefs and cultural norms—things like not shaking the hand of the opposite sex, or taking care to pair female patients with female doctors. “[I] try to have doctors to understand the culture and patients to understand the system,” he said.

Abdirahman has a similar story to many of the patients he works with: After fleeing Somalia in 1991, he stayed in a refugee camp in Kenya until moving to Maine in 2004. He lost his father and two of his siblings in the Civil War, and helped his mother care for his six remaining younger siblings. He studied at University of Southern Maine in order to become a respiratory therapist, a job he works part-time so that he has time to do his counseling.

His work as a counselor is also bolstered by his knowledge of Islamic theology, which has led people to sometimes call him a Sheikh, an honorary title given to Islamic leaders or clerics. With fluency in medicine, Islam, and English, he says, “I was able to communicate to people in terms of faith and in medical terms. I became a man that fits very much everywhere.”

In Islamic theology, in cases where neither the Qur’an nor Sunnah (the record of Mohammed’s teachings) offer clear guidance, Muslim scholars and ethical experts will exercise a system of Islamic jurisprudence known as Ijtihad. The term, which means “the utmost effort an individual can put forth in an activity,” refers to a way of working through textual grey areas to form legal opinions.

The case of Ezadin Mahmoud takes three days of careful Ijtihad.  

Abdirahman believed Ezadin to be dead and suggested that they remove his oxygen, so that his family could bury him before the weekend, when the funeral home closed. (In Islam, the dead should ideally be buried before sundown on the same day of their death.) The family did not want to hear anything about the burial. The imams were equally at a loss for advice. They sat in the waiting room of Maine Medical, while combing the Qur’an and Sunnah for an answer. Although part of the Sunnah deals with the end of life, there was nothing that explicitly stated how to regard a brain-dead patient on life support.

Professor Abul Fadl Mohsin Ebrahim, a professor emeritus of philosophy at the University of Kwazulu-Natal in  South Africa, summarizes the ethical dilemma of brain-dead cases: “The Qur’an informs us that death occurs when the nafs (the soul) is separated from the body. Thus the moment of death would be at the time when the soul is separated from the body,” he said. “But one has to concede that the Qur’an does not in any way tell us anything about the nature of the soul nor of its location in the human body.”

The key question in cases like Ezadin’s, then: Does the soul depart—and the life end—when the brain dies, or when the body does?

A 1968 report from Harvard Medical School on the same question concluded that irreversible coma should be the criterion for death. The Uniform Declaration of Death Act, drafted in 1981 by a President’s Commission Study on Brain Death, reached a similar conclusion: Death was “irreversible cessation of circulatory and respiratory functions; or irreversible cessation of all functions of the entire brain, including the brain stem.”

According to those criteria, Ezadin Mahmoud was dead. To the doctors at Maine Medical, he was uniformly and irreversibly dead, for all practical Western purposes. His organs were ready to be harvested. His life insurance could kick in.

To understand how the medical criteria for death fit with the Islamic faith, Abdirahman, Ezadin’s father, and the imams reviewed the opposing decisions of two group of Islamic experts. One of the ruling bodies was the Islamic Fiqh Council, a group of Muslim jurists and scholars who meet periodically to develop a more formalized public opinion around issues concerning Islam. In October of 1987, this group met in Mecca to issue an opinion on the permissibility of removing life support:

The life-support instruments which have been installed upon the body of patient can be removed from him, when all the functions of his brain have stopped working finally, and a penal of three medical specialists and experts decides that this situation of the brain is irreversible, though the heart and breathing are still continuing due to the life-support instruments. However, he will not be declared legally dead unless heart and breathing fully stop working after removal of the life-support instruments.

But separately, the Religious Rulings Committee of the Kuwaiti government resolved on December of 1981 that, “a person cannot be considered dead when his brain has died as long as his respiration and circulation systems are functioning, even if that life continues through mechanical aid.” Classical Muslim jurists tend to hold that consciousness or the brain is not the source of life, but rather “it is the body which is involved in determining life and death, because it is the body that actually moves.”

Under this view, Ezadin Mahmoud, whose body thrummed with breath and moving blood, was still alive.

After three days of Ijtihad, on Friday, August 29th, Ahmed, Mahmoud, and the imams eventually decided the Islamic Fiqh Council’s opinion carried more validity because it took into account medical opinions along with religious knowledge. “If in these two groups […], one has medical knowledge and the other does not, and they both read through the same text,” Mahmoud said, “then we should respect the one who has the other information as well—not only religious, but also the medical.”

Mahmoud decided that he would ask the doctors to do one more screening of his son’s brain for any sign of life. If the results were the same, he would agree to take his son off life support on Monday.

They didn’t need to wait until Monday. By the following day, Ezadin’s heartbeat ceased, and there was nothing left to debate. In the end, the body had the final say. As quickly as they could, Ahmed and Mahmoud arranged for the funeral. In Somalia, they would have dug the grave themselves and had the body in the ground before sunset, but the more formalized procedures in the United States extend this process to at least 48 hours. Ahmed is currently spearheading the purchasing of a cemetery for the Somali community to quicken the burial process. For now, as often happens when navigating faith, medicine, and bureaucracy, they compromise.