The Moral Responsibility of Dying

At thirteen years of age, Jahi McMath was on the verge of redefining what it means to die. In 2013 the California teen had surgery to get her tonsils removed at her mother’s request. She was suffering from sleep apnea that often left her exhausted, which in turn affected her performance in school. It also affected her self-esteem.

Soon after the four-hour procedure was completed on December 9, 2013, Jahi went into recovery. When she started to spit up blood, nurses urged her to relax her throat. She bled through her bandages and Marvin, Jahi’s stepfather, demanded that a doctor see them immediately. He was dismissed from the room by a nurse. Nailah, Jahi’s mother, felt that her family’s requests weren’t being heard because they’re black. “If Jahi was a little white girl, I feel we would have gotten a little more help and attention,” Nailah said in recent New Yorker article.

Jahi was still bleeding abnormally three hours after the procedure. The nurses and physicians on staff were aware of this, as they noted it in their records. Frederick Rosen, the doctor who operated on Jahi, also noted that she had a congenital condition that put her at risk for hemorrhaging. However, Rosen had left for the day, and the nurses who cared for Jahi seemed unaware of this vital information.

Five and a half hours post-operation, Sandra, Jahi’s grandmother who came for support and is also a nurse, noticed that her granddaughter’s oxygen levels were extremely low. She alerted the medical staff who responded quickly by inserting a breathing tube. Jahi went into cardiac arrest in the process. After a few hours, her heartbeat was restored along with her breathing.

Jahi was declared brain dead two days later. An EEG test showed no brain wave activity. She could no longer breathe on her own, her pupils didn’t dilate, and she had no gag reflex. The only thing sustaining her was the ventilator. According to the hospital, the massive loss of blood circulation is what contributed to her brain death. According to the Uniform Determination of Death Act, someone who has “irreversible cessation of all functions of the entire brain, including the brain stem, is dead.” Common practice in hospitals allows a “grace period” of extended life-support accommodation. This is so that family and friends have time to visit their loved one for one last time, but not so long that other patients in need start to suffer.

Dr. Rosen expressed sympathy to Jahi’s family, but Sandra believed they hadn’t given Jahi the treatment she truly deserved. The family worked with a social worker who urged them to start thinking about taking Jahi off of the ventilator and to donate her organs. The family refused, demanding explanations and medical records before they decided anything. The hospital denied them the records as long as Jahi remained in their care. Nailah was in disbelief that her daughter was dead. Jahi still had warm, soft skin, and would move her limbs on occasion. These were signs of life, signs that Jahi could eventually recover.

A week passed by, and Jahi was still on life support. The family’s lawyer, Christopher Dolan, wrote a cease and desist order stating that removing Jahi from life support would violate her and her family’s civil rights. He also noted that the hospital was infringing on the family’s religious rights. Nailah, who is a Christian, believed that Jahi’s soul was still in her body. However, a judge ruled her legally dead by medical examination and ordered the hospital to release her body to the county coroner. In January 2014, Jahi was issued a death certificate.

With the help of their lawyer, Jahi’s family got the hospital to agree to release Jahi with a ventilator and intravenous fluid lines. She was airlifted to an undisclosed location in New Jersey, which is one of two states (the other being New York) where the religious rights of the family are protected in cases of brain death. The laws were originally implemented to accommodate Orthodox Jews, who sometimes believed that life is signified by the presence of breath. The hospital was also able to administer a feeding and breathing tube, a request previously denied at the Children’s Hospital in Oakland, California. This is because they believed Jahi to be dead, and providing time and medical care to a dead patient is morally irresponsible. The family estimated the cost of her weekly hospital care at $150,000 a week. That’s over half of the settlement money they could receive in a malpractice lawsuit if they accepted her death. Malpractice lawsuits for living children have no cap on settlement money in California—another reason to argue that she is alive.

Accepting Jahi as legally dead is the most ethical approach to this case, and perhaps the most difficult for the family. Providing continuing care to a patient who is brain dead, as it is defined in the Uniform Determination of Death Act, benefits no one. It impacts other patients who have a chance of recovery and are in need of medical staff, treatment, and resources.

Beyond the accommodation period of life support, continuing care may encourage “folie a famille,” a shared psychosis of the patient’s family. Nailah believes her daughter is only “sleeping.” She has videos of her moving a finger or toe on command, despite doctors dismissing the movements as Lazarus signs.

Challenging the status of death also raises concern for those in need of organ transplants. Several hundred thousand patients are on waitlists for transplants, most of which come from braindead patients. One of the only organs transplanted from a living person is the kidney. Several thousand people also die each year because the organs they receive are not successful enough, or they don’t receive organs at all. If brain death is challenged, more and more irreversibly brain-injured patients will remain on life support with harvestable organs that could be used to save another person’s life. Often times the decision against donating organs of a braindead patient is based on the religion of the patient’s family and the faith they cling to that they’ll recover. Brain death should be understood and accepted in the lay community in the same manner as cardiac death.

As court cases continue, including a malpractice lawsuit against Dr. Rosen, Jahi sadly remains “alive” but hardly living to this day.