“Patients and even some doctors are mixed up about the proper use of concepts like coma, brain dead and persistent vegetative state,” said Art Caplan, a professor of bioethics at NYU Langone Medical Center. As a result, he said the terms are often communicated to patients' families in ways that are confusing and misleading. “The fact that physicians themselves don't fully understand the differences indicates that there is work to do to get these ideas clear,” he said.
When delivering news of brain death, physicians face the dual challenge of clearly conveying its irreversibility and that life support will be removed, while remaining compassionate and providing the family time to accommodate the loss. It's a slightly different conversation than explaining a patient remains in a coma or a vegetative state.
In Texas, a young pregnant woman, Marlise Muñoz, 33, was declared brain dead at the John Peter Smith Hospital in Fort Worth, at about 14 weeks of gestation. Muñoz's husband is fighting to remove life support, which the hospital refuses to do, citing a Texas law that prohibits the withdrawal of life-sustaining treatment from a pregnant patient despite an advanced directive or medical power of attorney. On Tuesday, the husband filed suit to have a judge order John Peter Smith Hospital to take his wife off life support.
Thirteen states have laws overriding the patients' directives if the hospital believes there is hope the baby will be brought to term, according to the legal website Nolo.com. But because of the paucity of cases of maternal brain death during pregnancy, there is also little research on measures to successfully keep the fetus alive until viability.
In California, the family of 13-year-old Jahi McMath fought to keep her on life support at the Children's Hospital & Research Center in Oakland despite her being declared brain dead following complications from tonsil surgery. The hospital refused, and on Jan. 5, per court order, the family transferred the girl to an undisclosed hospital in another state. Some bioethicists have called the second hospital's acceptance of McMath “crazy” and “irresponsible.”
In both of these cases, there is confusion over “'brain death' death,” Caplan said in an interview. More needs to be done to address how these terms are communicated to the patients' families, he argued.
“We like believing in miracles, that's just one of the cultural facts about Americans,” he said. “But hospitals have authority to stop treating the dead. If you're going to try to accommodate a family so they accept the fact that their loved one has died, you have to set firm limits on how that's going to happen.”
Dr. James Bernat, a professor of neurology at the Dartmouth-Hitchcock Medical Center, agreed that there are variations in how neurologists and neurosurgeons handle delivering the news to patients. Some are absolute and say the patient is brain dead and treatment will be discontinued, while others give the family time to accept the loss before discontinuing life support. But he said physicians should never provide false hope as long as they have done the exam correctly and determined brain death.
“In the case of brain dead, there is no hope,” Bernat said.
The American Academy of Neurology says brain death occurs when all brainstem reflexes have permanently stopped working. Once the brain's clinical functions are irreversibly lost, a human being is considered to be dead. Brain death is a medically and legally accepted determination of human death in the United States and most of the developed world, according to the AAN guidelines. There is no treatment. The only way to keep a brain-dead patient “alive” is through intensive life support, including ventilator care, which is what the two brain-dead young women are receiving.
The terms brain dead, coma, persistent vegetative state and minimal consciousness aren't as well understood by most doctors as they are by neurologists and neurosurgeons.
“For doctors who don't take care of these patients or make these diagnoses, they wouldn't have a working knowledge,” Bernat said. Consequently, the terms are even more confusing for families, who experts say may translate brain dead as “the brain has died but the body may come back” and hear only “life” when doctors talk about “life support.”
AAN guidelines provide clarity on the diagnosis of brain death, and include a checklist to guide clinicians. They note that through clinical neurological assessment, the patient must show, for example, a complete lack of responsiveness, be absent of brainstem reflexes and be unable to breath independently.
Brain death was originally coined in 1959 by French neurologists, and in 1968 the Harvard Ad Hoc Committee on Brain Death published a report that eventually led to the first national legislation around the diagnosis. The term is still relatively new, and determination of the condition “remains an amorphous and unfamiliar concept to most of the public and even to many within the healthcare profession,” wrote the authors of a 2010 report posted in the Virtual Mentor, a monthly bioethics journal published by the American Medical Association. The report argued that “urgent attention” needs to be given to the consistent application of the term.
Follow Sabriya Rice on Twitter: @MHSRice