The concept of death by neurologic criteria — the irreversible loss of the clinical function of the whole brain, commonly known as brain death — is at the center of a very public ethical debate after two tragic stories-turned-legal-battles took the media by storm in January.
The first case involves 13-year-old Jahi McMath, who was declared brain dead after complications from a sleep apnea surgery, and whose family took Children's Hospital Oakland in California to court for the right to move Jahi to a private facility that agreed to keep her on the ventilator despite the declaration. The second case of a 33-year-old paramedic, Marlise Muñoz, who was declared brain dead while pregnant, had the family and hospital at odds for entirely different reasons — with the hospital refusing to follow the family's wishes to take Marlise off the machines because of a misinterpreted Texas law. [See the sidebar “Two Cases of Brain Death” for more details.]
The cases, albeit different, may reflect the gaps in public understanding of brain death and the continued uncertainty about the role that families of loved ones with disorders of consciousness should play in determining their fate and care, neurologists and neuroethicists interviewed for this article told Neurology Today.
Brain death can be a difficult concept for family members and the public to understand, but all 50 states recognize it as a form of death by either case or statutory law, said James Russell, DO, vice chair of the neurology department at Lahey Hospital and Medical Center and clinical professor of neurology at Tufts University School of Medicine. “It's a generally well-accepted and documented concept, and no court has ever overturned a brain death diagnosis — although they have allowed religious exception in NY and NJ,” added Dr. Russell, who is also the vice chair of the Ethics, Law, and Humanities committee of the AAN.
THE NEEDS OF FAMILIES
Sometimes it just takes time for families to come to terms emotionally with the diagnosis of brain death, especially in situations that involve young and otherwise healthy people who experience a sudden brain injury or trauma. “The situation is further complicated by the media reports of patients in coma who recover unexpectedly. People are confused about what's coma, brain death, or the vegetative state,” said James L. Bernat, MD, professor of neurology and medicine, and Louis and Ruth Frank professor of neuroscience at Dartmouth's Geisel School of Medicine. “They see their relative who looks asleep, whose chest is rising with the ventilation and heart is beating with blood circulating. So the idea that their relative is dead is difficult for them to comprehend.”
Compassionate physicians have the option of waiting and trying to allow the family to come to terms with their loss, Dr. Bernat said; but, he asked, for how long? “That is the question. I think hours to a day or two may be reasonable. But it isn't the case that you can just keeping treating them indefinitely.”
Some physicians, for example, have suggested that family members be allowed to observe the neurological examination that determines brain death, particularly the apnea test — and that might help improve their understanding and acceptance of the concept. But one study exploring that strategy showed that it did not help as much as hoped.
MEDICO-LEGAL CONCERNS PENDING
“Whether the recent cases in the news reflect a broader public misunderstanding of the idea or a mistrust of the medical profession in general, I don't know. But I worry about it,” Daniel Larriviere, MD, JD, acting chair of the Ochsner Neuroscience Institute in New Orleans, told Neurology Today.
Referring to the case involving the 13-year-old Jahi McMath, Dr. Larriviere, chair of the AAN Ethics, Law, and Humanities Committee, and member of the Neurology Today editorial advisory board, said he did not understand “the legal reasoning that would support a decision to let the family transport a dead body across the country for further ‘care,’” or issue a restraining order that kept the hospital from removing the girl's ventilator.
As a stroke and neurocritical care specialist and neurohospitalist at Providence Stroke Center in Portland, OR, Archit Bhatt, MD, is on the front lines of these life and death scenarios. He often sees families who need time and reassurance before accepting a brain death diagnosis. But, he said he's never had a case like the one in California where the lawyer and the family are unable to comprehend the medical facts. “What takes precedence — the medical facts or personal beliefs? I think the legal system, the medical system, and the community have already made the determination a long time ago that brain death is actually death — and should be treated as such.”
Dr. Bhatt, who is a founding and associate editor of The Neurohospitalist journal, questioned why a legal system that has agreed to definitions of brain death would oppose the diagnosis in the McMath case. “If the legal system and the medical system were on the same page, the family would not have to bear this burden. We'd just let them know that the patient has passed away,” as they would with cardiac death
Dr. Larriviere is concerned, as well, about the impact these case decisions could have on clinicians and other health care personnel who will be essentially [in the case of Jahi McMath] providing care for a dead body. Treating physicians may feel the effects “emotionally and psychologically, in their roles as healers as well as in terms of using scarce resources for a deceased person,” he said.
And what do these cases say about patient autonomy? Particularly with the case in California, noted Dr. Larriviere, patient autonomy was used to make demands on the hospital rather than to protect the patient, or as “a sword rather than a shield. Permitting families to use autonomy in this manner changes the physician's role. In a sense, they are asked to suspend their role as physicians and counselors and instead to fulfill the orders of the family.” Dr. Larriviere added that he does not believe this is what people want from medicine. “They want someone who can guide them through an illness or through difficult medically related decisions,” he said. “I think it's a mistake to give so much weight to patient autonomy that it fundamentally changes the essential nature of the medical profession.”
Dr. Bernat said the recent cases also raise public policy questions. “For example, if the medical community and the legal community are in agreement that brain-dead people are dead, should society pay for further treatment of them if families insist on it? Or who should pay for it? I don't have the answer, but I think the insurance companies would not want to do that.” Dr. Bernat is a member of the Neurology Today editorial advisory board.
A MATTER OF TERMINOLOGY?
The experts largely agreed that to improve public understanding of “brain death” the terminology for brain death may need to change. They suggested using terms such as “death by neurologic criteria” or “determination of death by neurologic criteria.”
“I think ‘brain death’ confuses people and makes it seem like it's different than regular death,” said Dr. Larriviere. Dr. Bhatt agreed: “When a patient has a cardiac arrest and dies, we simply say the patient is deadÉ. Regardless of the way we determine death, I think we should have just one terminology for death. The only reason you want to know whether the patient is brain dead or not is for transplant purposes — and you can always explain that after pronouncing death.”
Dr. Larriviere told Neurology Today that ideally these cases will encourage earlier conversations between family members about end-of-life preferences, prompting “a formal advance directive, health care power of attorney, or oral instructions for their family members to follow should they be unable to speak for themselves.”
The unfortunate reality, said Dr. Russell, is that “when we are young, many of us don't think of these things. So when bad things happen to young people, they may not be in a position to express their wishes in terms of what they do or do not want for themselves,” which can make matters even harder for their families.
Dr. Larriviere said it is possible that more challenges likes those in California and, perhaps, Texas, could emerge. “Now would be an especially good time to educate the public on the meaning and protocol for determining death by neurologic criteria,” said Dr. Bernat, because people are already paying attention to the media reports and actively engaged in the discussion.
TWO CASES OF BRAIN DEATH
Two young patients who experienced sudden death by neurologic criteria (or brain death) spawned high-profile medico-legal battles in January between their families and the hospitals — with two very different purposes and outcomes.
The first case involved Jahi McMath, a 13-year-old girl, who was declared brain dead by at least three neurologists on Dec. 12, according to media reports, after suffering complications from sleep apnea surgery at Children's Hospital Oakland in California on Dec. 9. Jahi's family was unwilling to remove her from a respirator and took the hospital to court to forbid the doctors from doing so. After granting a temporary restraining order to keep the hospital from “pulling the plug,” the Alameda County Superior Court ruled that the McMath family could move Jahi on a ventilator to another facility that would be willing to provide further support, but absolved the hospital from any potential complications during the move, an article in the San Francisco Chronicle reported. At press time, Jahi remained in an undisclosed facility.
In the second case, a 33-year-old paramedic, Marlise Muñoz, was declared brain dead on Nov. 26 after collapsing in her kitchen in Fort Worth, TX. Her husband Erick, a firefighter, and her parents said Marlise had previously expressed wishes not to be kept on a ventilator in such an event, but the hospital refused to cut off support. Marlise was 14 weeks pregnant when the declaration was made, and administrators cited a Texas law that they said forbade removing “life-sustaining treatment” from a pregnant woman. But family members and ethicists argued that such a law should not apply to someone who was legally dead. So, a two-month legal battle ensued, ending finally on Jan. 25 when the judge ruled in favor of removing Marlise from the ventilator.
[Recently, another similar and still-developing story — also involving a young pregnant woman who was declared brain dead — has garnered considerable media attention. Thirty-two-year-old Robyn Benson was declared brain dead on Dec. 28 after suffering a cerebral hemorrhage in Victoria, British Columbia. However, unlike the Muñoz family, Robyn's husband Dylan has asked the hospital to keep his wife's body on ventilator support until the fetus may be delivered safely.]
TUNE IN, LISTEN UP: James L. Bernat, MD, professor of neurology and medicine, and Louis and Ruth Frank professor of neuroscience at Dartmouth's Geisel School of Medicine, discusses how to approach difficult conversations of brain death with patients' caregivers and family, as well as why two recent highly publicized cases of brain death may help improve public understanding of brain death determination: http://bit.ly/WzlC1O.