By Alan Cassels
When reporting on aging, one complicated issue journalists eventually will encounter is “brain death.” Understanding the nuances of this issue is vital since media reporting shapes public perceptions and so can impact more than 120,000 Americans on a waiting list for a replacement heart, liver or kidney. Nearly two out of three Americans over age 50 are registered to be organ donors, according to the Department of Health and Human Services, but because of insufficient organ donations sometimes caused by the confusion around brain death, those who need a donation may not receive one in time.
Here is the issue in its simplest form: if a person is brain dead, that person cannot be considered “alive on life support.” It is true that human organs may be kept viable through mechanical ventilation and other means, but a person with no functioning brain activity is as dead as dead is. They cannot be “brought back to life.” Brain death occurs when the brain is totally and irreversibly non-functional, usually following oxygen starvation. There is a definitive test to determine whether there is no brain stem activity. Confusion around what constitutes “death” means that loved ones of a brain-dead person may not consider their loved one as a potential organ donor.
Basic facts
Brain death is considered the same as cardiopulmonary death under the law and is a distinct entity from patients who are either in a coma or a “persistent vegetative state,” in which organs can survive without medical intervention. Also called “death by neurologic criteria” (DNC), misunderstandings around what exactly constitutes brain death can have a profound effect on the willingness of relatives to consider donating organs from their just-deceased loved one.
Medically-speaking a brain death is determined after a series of tests reveals that a comatose patient has no brainstem reflexes, no movement in response to painful stimulation and is unable to breathe spontaneously.
Legally-speaking, according to study authors Ariane Lewis and colleagues: “The Uniform Determination of Death Act states that a person who is brain dead is legally dead in the United States. This act is incorporated into legislation in every state.” For a full explanation of brain death, this resource lays out the criteria in simple point form.
How well is the issue reported?
If media consumers in the United States rely on the media’s interpretation of “brain death” they may be exposed to a lot of misinformation. Those conclusions are the main thrust of a study that appeared in June 2016 issue of Clinical Transplantation. The study examined reporting around two high-profile U.S. cases that generated a lot of sustained news media coverage. The Jahi McMath case, covered by USA Today, the Washington Post and The Daily Beast, among others, featured the case of a 13-year old California girl who was declared brain dead following surgery to fix a sleep apnea problem. Her family struggled to maintain Jahi on “life support” even though the girl was considered clinically and legally dead. In California and most other states, the Uniform Determination of Death Act Criteria outlines cardiac and brain death, both of which are considered a legal and clinical death. Because of religious objections and the belief that Jahi could “come back to life,” the family sued to have her maintained on mechanical support.
The Texas case of Marlise Munoz was covered by CBC, ABC, CNN, NPR and the New England Journal of Medicine. Munoz, who was carrying a barely-viable 14-week-old fetus, was declared brain dead and her family wanted to remove her from organ support. But Texas state law states “life-sustaining treatment” cannot be removed from a pregnant woman. What resulted was a long series of court actions until a judge determined that not only was the pregnant mother brain dead, but her fetus was too – so there was no “life” to sustain.
Coverage of both cases included a lot of misinformation. Most importantly the use of the term “life support” implies that someone is alive. If a person is brain dead, they are dead, yet only about 4 percent of the stories provided proper definitions of these terms. A 2013 paper in the Journal of Medical Ethics reviewed 519 American media articles containing the words “brain dead” or “brain death,” and found less than 3 percent of the stories defined “brain death” and half of those contained incomplete definitions.
It’s important for journalists to remember that if brain death happens in a hospital setting and the person’s vital organs can be kept viable for transplantation, then there are many compelling reasons to do so since the organs can be used to keep others alive.
Important tips
Journalists who follow aging may be more likely than others to have to report on what is “brain death.” Here are some ways improve reporting of this important issue:
- Properly define brain death. A brain dead person is dead, although their organs may be kept alive. Emphasize that brain death is equal to cardiovascular death, even if the heart can be kept beating through mechanical means.
- Define the necessary terms properly and don’t say “life support” when you mean “organ support.”
- The term “persistent vegetative state” or “coma” is not the same as brain dead. As one expert explained, “Journalists should include the statement that ‘brain death is legal death’ and explain how this is distinct from a persistent vegetative state.”
- Don’t be scared of challenging the words of family members or even quoted experts who confuse the issues. Saying that “we are keeping her on life support” when she is already brain dead will continue to confuse the public.
Excellent sources
- Ariane Lewis at the departments of Neurology and Neurosurgery at NYU Langone Medical Center in New York. Email: ariane.kansas.lewis@gmail.com; phone: 646-501-0243.
- Arthur Caplan, Drs. William F. and Virginia Connolly Mitty Professor of Bioethics, Department of Population Health, Director Division of Medical Ethics 227 East 30th Street, New York, NY 10016. Email: Arthur.Caplan@nyumc.org; phone: 646-501-2739.
- The Brain Death Toolkit created by the Neurocritical Care Society is a useful media resource.
Why this matters
By not defining terms properly journalists are more likely to misinform than educate the public on brain death and this comes at a huge cost, hindering society’s ability to promote organ donation. Worse yet, by making the issue more confusing to the public, the news media can make it more likely that poor public policies will be made. This is very applicable to a family’s willingness to agree to organ donation. Ariane Lewis cites a study from Brazil that found “80 percent of people would agree to donation if they were told their family member died, but only 63 percent would agree if they were told their family member was brain dead.” In other words, by not knowing that “brain death” was irreversible and the same as any other “death,” people may make decisions that reduce rates of organ donation.
Alan Cassels (@AKECassels) is an author, blogger and drug policy researcher at the University of Victoria. He’s also an expert adviser with EvidenceNetwork.ca, a nonpartisan online resource designed to help journalists covering health policy issues in Canada.
