You may recall the case of Jahi McMath, the thirteen-year-old who was pronounced brain-dead five years ago after excessive bleeding caused by complications from a routine tonsil surgery. According to Christopher Dolan, the family’s attorney, McMath died as the result of complications associated with liver failure on June 22, 2018.
After her initial surgery in 2013 at Children’s Hospital in Oakland, California, the teenager was alert and seemed to be recovering well. Her family noticed that she began to bleed excessively, but their warnings to the hospital staff were ignored. Soon after, McMath went into cardiac arrest and was moved to intensive care, where she was placed on a ventilator. Three days later she was declared brain-dead.
Children’s Hospital wanted to remove McMath from the ventilator as soon as the doctors and a judge declared her dead. McMath’s family refused to accept this information as she still showed signs of life, and fought to keep her on a ventilator.
McMath was released by the hospital in January 2014 and transferred to an undisclosed location, which later turned out to be a hospital in New Jersey. She was said to be doing well and even improving, according to Dolan.
The young woman’s death certificate lists the cause of death as “bleeding as a result of hepatic (liver) failure.” She was surrounded by her mother and stepfather, Nailah and Marvin Winkfield, in her last moments. Nailah said she is “devastated by the loss of her daughter who had showed tremendous strength and courage,” and that she “forced the world to rethink the issue of brain death.”
She has indeed awakened the death debate once again.
At what point does life end and death begin? With several artificial ways to sustain life, distinguishing life from death can sometimes fall outside the realm of science, according to Robert Veatch, professor of medical ethics at Georgetown University and senior research scholar at Kennedy Institute of Ethics. He says this debate reflects the “intersection of medical science and philosophy and religion.”
In McMath’s case, the debate was brain-death versus heart-death. She was declared brain-dead, referring to death of the brain stem—the body part that controls functions such as breathing, heart rate, and consciousness. But she was connected to a ventilator, so her heart still continued to beat and her family considered her alive.
In most cases with adult patients, they’ll have end-of-life wishes sorted out in the event that they can’t make their own medical decisions. Since Jahi McMath was just thirteen, her medical wishes were unclear; her family felt there was room for interpretation, even though death is usually determined by medical professionals.
The Uniform Determination of Death Act makes it pretty clear: “an individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead.” This definition is adopted in all fifty states.
You can easily determine if a person’s heart or breathing stops by feeling a pulse, even just seeing the rise and fall of their chest. Seeing brain activity or lack thereof is a bit more difficult to comprehend. In some cases, people live in vegetative states where their brain stem functions, but they don’t have higher-level thinking.
Bioethicists contend that there are a few different ways to define death, dependent on the accepted definition of what it means to be alive. There are three approaches, according to Veatch.
The first is that the functioning of our organs is what makes us alive, because we are organisms. You can have a non-functioning brain and still be alive. This is known as the “circulatory-based” approach, which McMath’s family chose to follow. Many religious people also follow this criteria. According to these terms, death is “ceasing to engage in the various biological activities by which it develops and perpetuates itself, things like respiration and blood circulation.”
The second approach is called the “whole brain view,” which contends that a person is alive as long as a part of their brain is functioning. This is the reason that people in persistent vegetative states are not declared dead. They don’t have any cognitive functions, but they have also recovered to partial or even full consciousness in some cases.
The third approach says that some parts of the brain are essential in making us human, but other parts are not as important. Our self-awareness, personalities, and our ability to think seem more important than lower level brain activity, such as a simple reflex. For example, if our cognition ceased to exist but we still had minimal brain activity, we would fail to recognize our own state of being. The essential self is gone, and all that’s left alive is a “human animal.” One problem with this view is the question of self-awareness. Is it consciousness, or are we conscious of our own consciousness? And how would we explain people with severe dementia who might not be self-aware?
Musings and debates on being, consciousness, and death have occupied our minds for hundreds of years. They certainly serve their purpose in the long run, but what should we be doing about cases such as McMath’s in the meantime?
Veatch believed that Jahi’s mother’s opinion should have trumped those of medical professionals. Similarly, if a patient in a persistent vegetative state can’t decide for themselves, a family member’s wishes for them to be taken off of life support should be granted.
In Veatch’s view, leaving the decision up to the family is the most practical, especially because there is no consensus among scientists, philosophers, and bioethicists on the definition of death. “In my view, when we have those fights over what’s valuable about human life, there’s no way they’re going to be resolved,” he says. “So we might as well let [families] make their own value judgments based on their views of what’s important.”
Family members also want their decision to be respected, regardless of religious beliefs. Since these cases can be so severe and irreversible, a family’s decision to maintain life support is likely not entirely about recovery, but about having time to grieve and adjust to a new reality. If there’s any consensus at all, it’s that families want a clear voice in the decision-making process when it comes to their loved ones.