Written by: Dr. Kathy Gennuso

Vacation is a great time to catch up on some reading, and one of those pieces I would like to draw your attention to is an article by Nancy Valko, “Brain Death: Do We Know Enough?,” published in The National Catholic Bioethics Quarterly(Spring 2016). Not exactly lighthearted reading for sitting by the pool, but it contains important messages that all individuals, healthy or not, need to take time to consider. This article raises important issues everyone should become aware of before being faced with an emergency that brings the determination of brain death unavoidably close to home and horrifically all too real.

Valko, RN and legal nurse consultant, believes that the public generally trusts in a certainty (and probably standardization as well) among healthcare professionals regarding any diagnoses of brain death. If not, fewer organ donor cards would be signed. However, there may be times when that trust is unwarranted and the certainty questionable, especially when less than completely detailed guidelines are in place where a patient’s fate hangs in the balance.

Healthcare professionals who hold this trust deserve the support of the best tools available in carrying out such a weighty responsibility. Patients deserve the assurance that they do have and do use them.

Although the American Academy of Neurology (AAN) issued fairly specific guidelines in 2010 to help ensure against inaccurate determinations, Dr. David Greer’s study results published in Feb. 2016 issue of JAMA Neurology described the variability that still exists among various healthcare facilities’ determination of brain death policies and the deviation from the AAN’s recommendations. Furthermore, in a Dec. 2015 Medscape interview, Greer revealed some of the concerns he found most alarming, like the fact that not all facilities’ policies specify who can make the determination nor what the appropriate PCO2 level should be.  Some, according to Greer, don’t require comprehensive testing for cessation of lower brainstem function. (Isn’t that last one necessary to meet criteria for the definition of brain death since 1981′s Uniform Determination of Death Act?)

This puzzles (and scares!) me — as an ethicist, businesswoman, and a potential future patient — and I would love to hear a credible defense.

I understand that running healthcare facilities successfully is an enormous task, but I would imagine that this task like any other important one done well is done systematically, broken into parts, and consistently reevaluated. First identifying and understanding a problem, then creating, communicating, implementing, and overseeing all necessary policies and procedures – for the protection of both the practitioners and the patients – is a huge part of this responsibility. Huge, but doable, as many topnotch hospitals regularly demonstrate. Unfortunately, not all will face death in a topnotch facility—some hospitals are saddled with great obstacles and receive low Leapfrog ratings or less than optimal HCAHPS scores. But even in a challenged facility, an issue like how they diagnose brain death is so basic, so assumed valid, and so illustrative of that facility’s attitude towards their mission of care that there should be no opportunity for misdiagnosis by any individual physician who must interpret vague, incomplete, or loosely cobbled policies. Potential error caused by the lack of carefully measurable and clearly communicated direction is just not acceptable.

OK, I also understand that even 100% compliance with AAN guidelines will not remove all doubt from brain death determination – that has been acknowledged by medical professionals – but it would reduce the uncomfortable variability noted in Greer’s study. Those guidelines are probably a great starting point, maybe a floor not a ceiling, to crafting the best policies, and the process of thoughtfully going through them periodically to discuss and compare to current practices might benefit practitioners and patients alike. Doing so also might help flush out a general medical consensus regarding necessary revisions.

In any case, clear policies that stem from well thought out expert guidelines and the promotion of such are a necessity at all facilities at all times. Even challenged facilities can commit to working to create a culture of excellence and to choosing and implementing a system that supports easy access to crucial, facility-specific information when needed and accountability to following policies/procedures. Great affordable technology certainly exists to facilitate this!

Closing up some of the critical loopholes and eliminating inconsistencies can truly affect matters of life and death – those kinds of matters the public trusts healthcare professionals to be the best at. Who else can they put their trust in to protect themselves and their loved ones when most vulnerable?