Doctors Face Scrutiny About Defining “Brain Death”

This article was originally posted on the author’s blog (https://nancyvalko.com) and is reprinted with her permission. Nancy Valko has been a registered nurse for 47 years and is a spokesperson for the National Association of Pro-Life Nurses (www.nursesforlife.org). She is also a speaker and writer on medical ethics and other health issues, and a legal nurse consultant.

 

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. (Emphasis added.) The patient is declared clinically dead. Only then is donation an option.[1]

 

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

 

As is revealed in a May 28, 2018 Wall Street Journal article–“When Are You Dead? And Who Decides? As more families challenge doctors who declare a loved one brain-dead, physicians are changing their approach”–the assumptions about brain death are now being challenged because of cases like Jahi McMath.[2] At age 13, Jahi suffered complications after a 2013 tonsillectomy in California and was declared “brain dead,” but she is still alive in New Jersey because her parents refused to allow the ventilator to be removed.[3]

 

With this article as well as a February 5, 2018 New Yorker magazine article about the McMath case titled “What Does It Mean to Die?”[4], the public is becoming aware of the ethical, legal and medical controversies surrounding brain death and questions are being asked.

 

The Wall Street Journal article cited one doctor’s remarks:

 

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.”

 

Alarmingly, the use of “quality of life” determinations as a basis for withdrawal of treatment decisions which are expected to end in death are already a serious problem when it comes to people with brain injuries or disabilities. This is particularly disturbing in light of articles by physicians, like Dr. Doyen Nguyen’s “Brain Death and True Patient Care,” which 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. [5]

 

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. [6]

 

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 [7] and that there were many cases of “brain dead” people who lived for months or years and who even grew proportionally and achieved puberty. [8]

 

Since the legal definition of brain death is “irreversible cessation of all functions of the entire brain, including the brain stem,”[9] these cases would seem to be impossible.

 

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. 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

 

In my article in the Spring 2016 NCBC Quarterly journal, “Brain Death: Do We Know Enough?” [11], I pointed out,

 

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.”

 

Personally, I am not against all organ donation. In the past, I have offered to be a living donor [12] for a friend who needed a kidney, watched my grandson cured of a rare disease through a bone marrow transplant [13] 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.
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*Apnea test: There are many different sets of criteria used to determine brain death. “Every set of criteria includes an Apnea Test. (“Apnea” means the absence of breathing.) This test is done by taking away the life-supporting ventilator for up to 10 minutes. This is medical suffocation. The patient can only get worse with this test. This test is commonly done without requesting permission.”-Paul A. Byrne, MD, “Do Your Organs Belong to the Government” http://www.lifeguardianfoundation.org/pdfs/organbelonggov_web.pdf