Alan Cassels is a drug policy researcher at the University of Victoria and a regular contributor to the blog. He is also the author, most recently, of The Cochrane Collaboration: Medicine’s Best-Kept Secret. He tweets as @AKEcassels.
“Brain death” is:
A. Considered the same as cardiopulmonary death under the law.
B. Not the same as a patient in a coma or “persistent vegetative state” where organs can survive without medical intervention.
C. Most likely to be reported in the media in ways that misinform.
D. Also called DNC or “Death by Neurologic Criteria,” the understanding of which can affect the rate of organ organ donations.
E. All of the above.
If you answered “E”, congratulations, because all those things are true about brain death. If you got the answer wrong, you’re probably like most people and not aware of the critical nuances of this issue. And further, if you rely on the media’s interpretation of “brain death” you are going to be exposed to a lot of misinformation. At least that is the main thrust of this study which appeared last month in Clinical Transplantation, yet itself barely made a ripple in the media.
Brain death is death; journalists need to make this clear
The study looked closely at how well brain death was reported by US news outlets, an issue that holds huge health implications for the 120,000 or so Americans on a wait-list for a replacement heart, liver or kidney. The results, drawn from examining two highly publicized brain death cases in 2014, are not flattering: 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 feeding more confusion to the public, the news media is detracting from consumer awareness and making it more likely that poor public policies will be made.
Here is the issue in its simplest form: if you are brain dead, you cannot be “alive on life support.” It is true that your 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. A brain death happens when the brain is totally and irreversibly non-functional, usually caused by a starvation of oxygen.
Medically-speaking a “brain death” is determined after a series of tests reveals that a patient who is comatose 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 has been incorporated into legislation in every state.” For a full explanation of brain death, this resource lays out the criteria in simple point form.
The good thing, however, is that if brain death happens in a hospital setting, and the person’s organs can be kept viable for transplantation, then there are many compelling reasons why they should be.
Only 4% of stories define “brain death”
The study looked at the reporting around two high profile cases in the US which generated a fair bit of news media coverage. The Jahi McMath case, which produced stories in USA Today, the Washington Post and the Daily Beast, featured the plight of a 13-year old California girl who was declared brain dead after a surgery to fix a sleep apnea problem. Her family struggled to maintain Jahi on “life support” even though the girl was 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 other story pertained to Marlise Munoz with reporting in CBC, ABC, CNN and NPR as well as a piece in the New England Journal of Medicine. The Texas woman was carrying a barely-viable 14 week-old fetus when she was declared brain dead and her family fought to remove her from organ support. There is a state law in Texas that says you cannot remove “life-sustaining treatment” from a pregnant woman. As you can imagine, then the courts got involved with much ensuing drama, counter claims, and media ink.
In both of these examples the reporting produced a lot of misinformation.
I spoke to the lead author of the study, Ariane Lewis in the Departments of Neurology and Neurosurgery at NYU Langone Medical Center in New York, and she told me about the vital importance of defining the terminology. She said: “The use of the term ‘ life support’ implies that someone is alive.” Even though many of the articles refer to brain death, her study found that “only 4% gave a definition of what brain death is.”
This seems to be a dreadful trend. 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% defined ‘brain death’ and of half of those contained incomplete definitions.
Lewis admitted to me that “Brain death is not something that gets written about on a routine basis,” but added that when it is, journalists “should include the statement that ‘brain death is legal death’ and explain how this is distinct from persistent vegetative state.”
How brain death is framed affects organ donation rates
This is very applicable to a family’s willingness to agree to organ donation. Ariane Lewis cites a study from Brazil that found “80% of people would agree to donation if they were told their family member died, but only 63% 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 would reduce the rates of organ donation.
For some perspective on this issue I spoke to Dr. Susan Molchan, one of our reviewers at HealthNewsReview.org and a geriatric psychiatrist and nuclear medicine physician. She used to do tests for brain death and told me that “one can be absolutely undeniably sure of brain death (which is death but for technology), by the tests that are done: a flat line EEG shows it, as well as an “apnea test,” in which the person is administered 100% oxygen, removed from the ventilator and still doesn’t breathe despite the rise in carbon dioxide level, which is an extremely strong stimulus for breathing, as when people black out for any number of reasons.”
While brain death might be definitively definitive, Dr. Molchan noted that “The stories that cite ‘miraculous recoveries’ are in patients with ‘persistent vegetative states.’” adding that if you looked closely at the articles or accompanying background information you’ll find that they had EEG activity for example.”
As for the stories this study team reviewed, lead author Ariane Lewis said they varied considerably in quality, with some being well-written and others, well, not so much. She said: “the general theme was focusing on the emotional and sensational aspects of the story, [where the] majority of stories veered away from providing any additional education or information.”
Tips for journalists reporting on brain death
Her paper makes some very helpful suggestions noting that experts in this area, including ethicists, neurologists and organ donation teams should make themselves available to the media to help clarify what a ‘brain death’ actually means.
I would add that journalists need to up their game and they could do so very easily by following these simple rules when reporting on “brain death.”
These stories obviously score high on the emotional thermometer, yet the implications of “brain death” in terms of organ donation is such an important issue that we shouldn’t be distracted by the heat. Journalists need to be part of the education game, not the misinformation game, and with twenty Americans per day dying while waiting on an organ donor list, there are real lives at stake, for the thousands of Americans waiting for a lung, a heart, a liver or kidney.