Doctors Face Scrutiny About Defining Brain Death

Most people who sign organ donor cards believe what organ donation campaigns tell us, such as:

“A person who has sustained a severe brain injury, such as from an accident, stroke or lack of oxygen is put on artificial support.

Doctors work hard to save the patient’s life, but sometimes there is a complete and irreversible loss of brain function. The patient is declared clinically dead. Only then is donation an option.” (Emphasis added)

This is termed “brain death” and organs are harvested while the patient is still on a ventilator (breathing machine) and has a heartbeat.

But as a May 29, 2018 Wall Street Journal article Doctors Face Scrutiny About Defining Death- As families challenge the determination of brain death, physicians are changing their approach.”, the assumptions about brain death are now being challenged because of cases like Jahi McMath, a 13 year old girl who suffered complications after a 2013 tonsillectomy in California and was declared “brain dead” but who is still alive in New Jersey after her parents refused to allow the ventilator to be removed.

With this article as well as a February 5, 2018 New Yorker magazine article titled “What Does It Mean to Die?” about the McMath case, the public is now becoming aware of the ethical, legal and medical controversies surrounding “brain death” and questions are being asked.

One doctor quoted in the Wall Street Journal article stated:

“Dr. Ross believes states should adopt laws that would allow people to choose their preferred definition (of death). One likely consequence would be that physicians wouldn’t do the brain-death examination if an individual doesn’t want death determined based on neurological criteria, she says.

For some of us, it is more about the quality of life rather than quantity of life,” she says.” (Emphasis added)

Alarmingly, the use of “quality of life” determinations as a basis for withdrawal of treatment decisions expected to end in death are already a serious problem when it comes to people with brain injuries or disabilities.

And doctors like Dr. Doyen Nguyen are writing articles like Brain Death and True Patient Care” that cite encouraging results regarding survival and even some good recoveries when severely brain-injured patients received newer treatments like body cooling and neuro-intensive care.

MY JOURNEY TO DISCOVER THE FACTS ABOUT BRAIN DEATH

Back in the early 1970s when I was a young intensive care unit nurse, no one questioned the new innovation of brain death organ transplantation. We trusted the experts.

However, as the doctors diagnosed brain death in our unit and I cared for these patients until their organs were harvested, I started to ask questions. For example, doctors assured us that these patients would die anyway within two weeks even if the ventilator to support breathing was continued, but no studies were cited. I also asked if we were making a brain-injured patient worse by removing the ventilator for several minutes for the apnea test to see if he or she would breathe since we knew that brain cells start to die when breathing stops for more than a few minutes.

I was told that greater minds than mine had it all figured out.

It was years before I realized that these doctors did not have the answers to my concerns either. After more investigation, I found that my questions were valid.

I also discovered that some mothers declared “brain dead” were able to gestate their babies for weeks or months to a successful delivery before their ventilators were removed and that there were many cases of “brain dead” people who lived for months or years and even grew proportionally and achieved puberty.

If the legal definition of brain death is “irreversible cessation of all functions of the entire brain, including the brain stem” (Emphasis added), these cases would seem to be impossible.

And when I served on a hospital medical ethics committee, I was horrified when one doctor found a less rigorous set of brain death tests at another local hospital and proposed that we adopt this standard so that more of our patients could be declared “brain dead” for organ donation.

Investigating further, I also found “near-miss” cases like Zach Dunlap’s. Zach Dunlap is a young man who was declared brain dead after an accident in 2007. Testing showed no blood flow to his brain and he was being considered for organ donation when a relative discovered a physical response. Four months later, Zach was making plans to return to work. In an interview, he said he heard a doctor say he was dead and it “just made me mad inside”.

CONCLUSION

As I pointed out in my Spring, 2016 NCBC Quarterly journal article titled “Brain Death: Do We Know Enough?” :

“When cases like those of McMath and Dunlap are routinely dismissed instead of rigorously investigated to establish the facts, medical certainty is not achieved and medical integrity is undermined. In addition, when hospitals set their own standards and policies for determining brain death without external accountability, lives—as well as the essential and necessary trust in the health care system—can and possibly will be lost.” (Emphasis added)

Personally, I am not against all organ donation.

In the past, I have offered to be a living donor for a friend who needed a kidney, watched my grandson cured of a rare disease through a bone marrow transplant and told my family that I wanted to donate my corneas and any other tissues that can be taken after natural death.

I am open to new facts but, until then, I refuse an apnea test or any other test to specifically determine brain death if I have a severe brain injury.

And I will not sign an organ donor card.

 

 

Do We Know Enough About Brain Death?

Just last month, there were two major developments reported on the controversial issue of brain death. One was an article about a lawsuit to revoke the death certificate of Jahi McMath, a California teenager who was declared brain dead 2 years ago but is still alive and apparently showing some signs of improvement.

The other was a December 30, 2015 article in Medscape, a website for medical professionals that requires subscription, titled “Not All Hospital Brain Death Policies Comply With Guidelines” . The article reports on a medical journal study titled “Variability of Brain Death Policies in the United States.”

Jahi McMath

Jahi McMath, a 13-year-old girl, underwent a routine surgery for sleep apnea in December 2013 at a California children’s hospital. That night she started bleeding and eventually her heart stopped. Her heart was restarted and she was placed on a ventilator to stabilize her condition, but soon the doctors declared her brain dead and prepared to remove the ventilator. However, the family insisted that the ventilator be continued, hoping that Jahi might eventually get better.

The doctors disagreed, insisting that Jahi was legally dead by brain death criteria. The parents went to court to keep the doctors from removing her ventilator but after a series of legal battles lasting weeks, a judge eventually gave Jahi’s family permission to transfer her to another facility that would continue the ventilator.

Virtually all the ethicists and other experts contacted by most media outlets condemned the family’s actions as denying the reality of brain death. In a January 10, 2014 USA Today article, ethicist Arthur Caplan, head of the bioethics division at New York University’s Langone Medical Center, criticized the judge’s decision for Jahi’s family, declaring that Jahi’s new doctors are “trying to ventilate and otherwise treat a corpse,” Caplan said. “She is going to start to decompose.”

Now, 2 years after Jahi was declared brain dead, her family is in federal court suing to revoke her death certificate because as their experts contend

“At this time, Jahi does not fulfill California’s statutory definition of death, which requires the irreversible absence of all brain function, because she exhibits hypothalamic function and intermittent responsiveness to verbal commands.”

A future ruling revoking Ms. McMath’s death certificate would be groundbreaking.

“Variability of Brain Death Policies in the United States.”

In this December 28, 2013 Journal of the American Medical Association Neurology article, a study was done of 508 US hospital policies on brain death determination.

Alarmingly, the article states that hospital brain death criteria requirements “are not 100% compliant” even with updated 2010 guidelines by the American Academy of Neurology which require only one examination to determine brain death.

And of the total 508 hospitals, the article states that only

“about a third of policies (33.1%) required specialist expertise in neurology or neurosurgery, but 150 policies had no mention of who could perform the determination. Many policies still allow for more junior physicians to determine brain death, the authors noted.” (Emphasis added)

Also disturbing, the article noted that some policies didn’t require testing of lower brainstem function (required for a finding of irreversible loss of all brain functions) with less than 80% of the policies requiring the absence of a cough reflex. Only 57.2% of hospital brain death policies required that oxygen be given to maintain oxygenation during the critical apnea test to determine if a patient can take breaths off a ventilator, even though low a low oxygen level can lead to more brain damage.

In an effort to reassure, Gene Sung, MD, past-president, Neurocritical Care Society, and director, Division of Neurocritical Care and Stroke at UCLA claims that he

agreed that there have there have been no documented reports of regaining function after a declaration of brain death. “But still, we don’t know for sure; maybe mistakes happened and they weren’t reported,” he said. (Emphasis added)

Actually, there have been multiple reported cases of people regaining at least some function after a brain death declaration such as Zach Dunlap (who fully recovered) as well as Jahi McMath.

If as Dr Greer, the lead author of the study, states “This is one of those diagnoses where we need to be correct 100% of the time”, must we not rigorously examine such cases to determine if or why there was a misdiagnosis to ensure that current brain death guidelines really hold up to scrutiny?

Besides the potential premature loss of lives, our medical integrity is at stake and we medical professionals must prove worthy of the trust society gives us.