New Guidelines for Determining Brain Death – But Will Hospitals Actually Follow Them?

From USA Today – “When is someone brain dead? Experts revise guidelines“:

Determining brain death is a complex process that requires dozens of tests to make sure doctors come to the correct conclusion.

With that goal in mind, the American Academy of Neurology has issued new guidelines — an update of guidelines first written 15 years ago — that call on doctors to conduct a lengthy examination, including following a step-by-step checklist of some 25 tests and criteria that must be met before a person can be considered brain dead.

The goal of the guidelines is to remove some of the guess work and variability among doctors in their procedure for declaring brain death, which previous research has found to be a problem, said guidelines co-author Dr. Panayiotis Varelas, director of the Neuro-Intensive Care Service at Henry Ford Hospital in Detroit.

According to the U.S. Uniform Determination of Death Act, brain death occurs when a person permanently stops breathing, the heart stops beating and “all functions of the entire brain, including the brain stem” cease.

While no one disagreed with that description, a 2008 study that included 41 of the nation’s top hospitals found widespread and worrisome variability in how doctors and hospitals were determining who met the criteria, said Varelas, co-author of the 2008 review.

Dr. James Bernat elaborated on the findings of the 2008 review, the implications and the intent of the new guidelines.

Dr. James Bernat, a professor of neurology and medicine at Dartmouth Medical School, said the new guidelines will help to remove some of the variability in how doctors determine brain death.

“The 2008 study disclosed rather surprising and disturbing variations in determining brain death, and in some cases there were practices that were just plain wrong,” Bernat said.

The main risk is that a patient will be declared brain dead who really isn’t, Bernat said.

“The authors of this (new) study are experts in their field and have done an evidence-based, authoritative review,” Bernat said. “They are saying, ‘This is the way it ought to be done.’ The goal is to improve the uniformity and the quality of neurological practice.”

Maybe I’m missing something, but I don’t see how this will have a great impact on current practices.  These new guidelines are recommended guidelines, just like the old ones. In fact, when I read the 2008 study, it seemed clear to me that the biggest problem wasn’t a lack of specificity in the guidelines, but a virtual guarantee of widely varying practices built into the Uniform Determination of Death Act. Here’s a relevant excerpt from the abstract of the study:

In accordance with the Uniform Determination of Death Act, guidelines for brain death determination are developed at an institutional level, potentially leading to variability of practice.

So, again, unless I am missing something, individual hospitals still get to set their own practice standards in making a determination of brain death.  I don’t see them hopping up and embracing the new, detailed standards here, frankly.  From what I can see, the trend has been for hospitals to move toward standards that broaden the types of medical professionals that can make the determination, as was recently done in Virginia in a way that makes it possible to have a determination made without the involvement of a physician in a neurologically-related specialty. In the link above discussing Virginia, there is also information on a 2006 attempt by medical organizations in New Jersey to expand the range of professionals allowed to make a determination of brain death and dropping the two-physician requirement at the same time.

It seems – and not for any sinister reasons – that hospitals want to be able to make those determinations more quickly and with which ever medical professional is handiest.  They’re looking to save money and time – and time may be important when organ donation is a consideration.

I don’t see how – unless the Uniform Determination of Death Act is rewritten – these new guidelines will have much impact, especially since even one of the authors seems to be engaging in a bit of denial over what the widely varying practices have meant in life-and-death terms:

“We found no credible report of anyone who was brain dead and who woke up and survived,” Varelas said.

I have two issues with this statement.  First of all, any individual who is being evaluated for brain death is obviously in dire straits.  It’s highly unlikely that many would survive the removal of life support, even if they were capable of recovery – and obviously those who might have gotten falsely diagnosed as “brain dead” who were organ donors had no chance to recover at all.

Which brings me to the second issue.  In 2008, 21-year-old Zack Dunlap was determined to be brain dead in an Oklahoma hospital following an ATV accident.  As luck would have it, one of the two friends who accompanied him to be prepped for organ donation had some medical training – and got a “feeling” that Dunlap didn’t look “ready.”  The friend did some simple test for reactions to scraping his skin – and got them.  Organ harvesting was called off and he was evaluated further.  Dunlap eventually made close to a full recovery.

I don’t know what to make of the statement Varelas made.  The report on Dunlap was very credible.  Maybe Varelas would claim that Dunlap was never really brain-dead, so he doesn’t count.  That would be beside the point, though.

Because no matter how thoroughly or sloppily the determination was made, once Zack Dunlap was declared “brain dead,” he was corpse in the eyes of the State of Oklahoma.  And he stayed a corpse until the hospital realized it made a mistake (although they called it a “miracle” rather than a “mistake”).

So – someone tell me, please.  What good are the new guidelines if hospitals don’t have to follow them? –Stephen Drake