If you are “brain dead” you cannot also be “kept alive on life support.” An important nuance and the news media’s failure in emotionally-charged  “brain death” stories

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.

Today’s post starts with a pop quiz.

“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.”  

  • Properly define brain death.  A brain dead person is dead, though their organs may be kept alive.
  • Define the necessary terms properly and don’t say “life support” when you mean “organ support.”  
  • A persistent vegetative state is not the same as brain dead.
  • 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.

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.    

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Dan Richardson

August 3, 2016 at 9:12 pm

Brain Death is fundamentally difficult to understand in itself for the common person. In addition to this great article and important topic, please allow me to offer a personal perspective – Aside from how brain death is communicated in the media – add shock and raw emotion to the equation and I suggest the process loved one’s experience in accepting brain death is just as fundamentally difficult.
After a tragic automobile accident and when my 7-year old son Dylan was pronounced brain dead, my initial reaction was, “What? Brain dead? How could my son be brain dead? He’s just hurt really badly, he’s just resting and will eventually wake up”. And “Donate his organs? Are you kidding me?” I got angry. “I don’t want to donate his organs” I said – “I just want to know when we can take him home!”
I only know my personal situation however when my son was pronounced brain dead, he was warm, he had a heartbeat, although mechanically, he was breathing, and, at times, touching his feet would make a toe move.
Experiencing the shock and awe of sudden trauma and having your loved one appear as if he’s simply sleeping, regardless of the expert subject matter or scientific proof thrown at you, accepting brain death just isn’t natural.
Also please understand, accepting that your loved one is brain dead and agreeing to organ donation at that moment or, any moment, meant that we had to accept and acknowledge our little boy Dylan WASN’T coming home. We weren’t ready for that.
That was so incredibly HARD.
For us, the reality of Dylan not coming home finally sank in and, the ultimate decision to donate Dylan’s organs was easy. It was easy because we knew it was the right thing to do. How we got there was the hard part.
The next day, little Dylan became a superhero and saved lives through organ donation. In October of this year, in 10 short weeks, were going to Kansas City to meet the man that received my little boy’s kidneys!
What a bittersweet yet wonderful day that will be. We can hardly wait!
Thank you

    Joy Victory

    August 4, 2016 at 12:09 pm

    Thank you for your perspective, Dan. Your personal experience with your son’s brain death is valuable to our readership.

Kristi Cress

August 4, 2016 at 11:53 am

Our son Keith was 23 when he took a test ride out in front of our home on 3.9.2012. My husband and I were there when the freak accident happened. As I went to turn to walk into the house to get a jacket I heard my husband’s blood hurling scream, The one you just now … I immediately called 911 and asked for a medic helicopter stating I my son was in a serious accident. I am one of those people who can stay calm under chaotic circumstances. As I did not know what the outcome was going to be, I was prepared for the worst. While in route to the trauma center I knew when they turn the helicopter around to the regular hospital that it wasn’t good. My husband, and myself and his fiancé, arrived at the hospital while they were still working on him trying to get a heartbeat. As the doctor came to me, he told me they have been working on him for 15 minutes … As he looked me in the eye he said I don’t think we’re going to get a heartbeat. I asked him if he would give me five minutes. He said yes. I got down on that hospital floor … And told God “he’s yours Lord, you can have him back but I can’t do this without you”! “You have to help me”! As I got up off that floor, I remember telling the Dr. (his name was Corey) do you mind turn anything down the sound so that I don’t have to hear the machine when you turn it off? And he nodded yes. I asked him, where are the documents that I need to sign to donate his organs because he’s in the system. He said I’ll get those to you right away . As we all went in there to say her goodbyes they had Artie had a match for his heart for somebody in San Diego, CA. waiting. I am so thankful that I said something. It’s so important not just to put that.on your drivers license, but to be in the system. My son is my hero! His heart is still beating and his love is still so alive within me me!

    Joy Victory

    August 4, 2016 at 12:08 pm

    Thank you for sharing your story, Kristi. Our hearts go out to you.

Bob Moss

August 4, 2016 at 6:31 pm

I am a very fortunate and thankful heart and kidney transplant recipient. Part of thanking my donor and his family is the volunteer work I do for Donate Life West, the organ procurement organization in the San Francisco Bay Area. I was very curious about, and have followed, the Jahi McMath case. Here is a sad case of brain death confirmed by three physicians, yet the mother prevailed in demanding the hospital release a deceased patient to a treatment facility in New Jersey. That state allows denial of brain death if it conflicts with the religious beliefs of the family. Jahi has been on a ventilator for over two years. Her mother has petitioned the court to rescind the death certificate, claiming Jahi responds to touch and voice by moving her feet and hands. The hospital malpractice award is limited by the State of California to $250K for a wrongful death, but unlimited lifelong care if the patient is permanently disabled. I am disturbed by all of this for several reasons. The attorney for the family is an overly-dramatic defender playing on public emotion for the mistreated child. Social media was full of support and encouragement, many citing personal stories about friends, relatives and perfect strangers who “came back from the dead”. In my volunteer assignments, I often speak to high school classes about the need for donor registrations, and during the Jahi controversy it was difficult to establish that brain death is death. In many ways, I am sure this situation hindered registration during the time it was front-page news. The family even accused “the transplant people” of sending a security guard to the quiet room to demand a donation decision. Nothing could be farther from the truth, of course. But this could and did suggest to the public that organs could be aggressively pursued, even if the patient was not, in public opinion, deceased.