What do We do Now? Family Members and the Brain Dead

When a patient is declared brain dead, what options are available for family members? Who decides his or her fate? A recent case in California triggered the interest of Syd Johnson, assistant professor of philosophy at Michigan Technological University.

Her article, “A Tragic Death and a Fight for Life,” was published in Impact Ethics: Making a Difference in Bioethics. 

In it, she addresses the California case and the many issues involved in it and similar cases.

“The 13-year-old girl went in for a tonsillectomy, had complications from the surgery, and was considered brain dead,” Johnson says. “The hospital wanted to withdraw life support, and the family disagreed on religious grounds. Taking to social media, the family raised enough money to move her to a facility to keep her alive.”

The definitions--and dilemmas--of brain death go back at least as far as 1968 and Harvard's Ad Hoc Committee to Examine the Definition of Brain Death, she says. At the time, there were two complications: if someone ended up in intensive care, they could be considered in an “irreversible coma,” from which they would not recover but could be kept alive, filling up hospital beds even though there was very little that could be done for them. Also, the growing successes with organ transplantation created pressures to remove them from life support. 

“In the four decades since, it has remained a controversy,” Johnson says. “Is brain death the same as death by cardiac arrest? Those are the two ways of being dead in all 50 states.”

Brain death is not, however, well accepted by the public, with many religious and moral objections.

“It’s hard for many to call them dead when the body is still warm and there are still some reflexes working,” she explains. “We wouldn’t put them in a box in the ground that way.”

One of Johnson’s main arguments is for “reasonable accommodations” for the family members. In the California case, the family was allowed to gather around the girl to say their goodbyes. Then the hospital was going to withdraw life support, according to state law.

Johnson favors a more tactful approach, at the very least.

“Some patients have been known to live on for another 20 years on life support,” she says. “When the heart stops beating, that is usually the point when even moral and religious objections disappear.”

New York has laws similar to California, Johnson says, but New Jersey is the only state that says you must use cardiac criteria to be considered dead, and that is important for medical insurance, which would continue to cover hospital care.

“Other states declare the person legally dead, and he or she must leave the hospital,” Johnson says. “And there is much discussion in the literature on brain death. Disagreement exists among doctors, neurologists and bioethicists.”

In following the California case, Johnson also says the hospital was quite insensitive and cruel, referring to the girl as a “dead body” and “deceased person” and implying that the family was crazy.

“It was an inappropriate way of talking to and about them,” she says. “Even when they finally moved the girl, the hospital transferred her to the coroner first; then the family had to move her to the long-term facility.”

So, the girl is alive by one definition and dead according to the state of California, Johnson says. The subject raises legal, medical, religious, bioethical and other issues.

“We need to talk about it as a society,” Johnson says. “What to accept, where do you give leeway to define death: when the heart stops and the body goes cold? We need to be reasonable to allow for broader definitions of it, even if it is a small number each year.”

The recent case in Texas where a pregnant woman was removed from life support is another prime example, she says.

“She was an EMT and so was her husband, and this is significant because they both really understood brain death, and they had a clear understanding that they would not want to be kept alive if brain dead,” Johnson says. “However, Texas law prohibits removing life support from a pregnant woman. The husband had to fight to remove it, and the judge agreed with him.”

There can also be complications when the brain dead person wishes not to be kept alive, but a family member wants to do so.

“The precedent is that the family member is overruled, and usually a pastor or counselor helps the family work through the disagreement,” she says.

Johnson calls it a fascinating topic because brain death is not like traditional death, and the need for organs and tissues can complicate the issue.

“Organs can be donated to seven or eight people, but tissues can be used by as many as 50,” she says, including some tissues as important as corneas and heart valves.

The brain dead can be an important source of those donations, and we need to be more honest about what we are doing in those circumstances, Johnson says.

“Brain death does not equal traditional death, and it is hard to accept,” she says. “The difference can be as significant as your death versus the death of your child. It would be better public policy to look at how those families are treated.”

Michigan Technological University is a public research university founded in 1885 in Houghton, Michigan, and is home to nearly 7,500 students from more than 60 countries around the world. Consistently ranked among the best universities in the country for return on investment, Michigan’s flagship technological university offers more than 120 undergraduate and graduate degree programs in science and technology, engineering, computing, forestry, business, health professions, humanities, mathematics, social sciences, and the arts. The rural campus is situated just miles from Lake Superior in Michigan's Upper Peninsula, offering year-round opportunities for outdoor adventure.