Remember that pediatric brain death case?

[neglect]

It is back. And I suspect this might be the Terry Schriavo of our time. It currently takes the form of one of the worst NewYorker articles I’ve read since Jonah Lehrer wrote that the scientific method was dead. Here: What Does It Mean to Die?

Now let me pause before adopting my typical manner and state this is a tragedy. The family feels mistreated after a post-op complication. They have a strong belief system in religion, but have now entered a delusional state, a sort of reverse Cotard’s, in which they believe their deceased daughter is alive. They are the victims, but they are also their own perpetrators through medical illiteracy and ignorance and unwillingness to learn.

Sadly the article does them a disservice. As do the family’s theocratic enablers.

The article states, “Her case challenges the very nature of existence.” This is perhaps true, if your notion of human thought and cognition rests on the soul or on a resting heart rate. The article is so terrible that I’ll spare you. Cut to the chase and you see that her condition remains fully consistent with brain death, although there’s no firm exam at this time (such is the nature of things when she falls into the laps of the theocrat neurologists who told us Terry Schriavo was really minimally conscious) she likely has myoclonus and other weird movements. But who can tell, right? Perhaps she has ‘evolved’ to PVS. And, an aside, isn’t MCS even worse? Do loved ones and reporters lack imagination so they cannot consider the immense suffering from being minimally aware of pain, itches, annoyances, emotional problems like depression/anxiety/panic and be unable to communicate this?

OK, the article. The basic formulation of brain death is this: if you cut the brain out of the body, then we do not consider that body to be alive anymore than we’d consider my eyes to be alive after I cut them out because this article was so bad. Because all of one’s humanity is contained in the brain, without a brain, the body is no longer a living human. I’m Neglect. Put my brain into someone else, and that’s where you will find Neglect. Other tissues might be alive, but the entire creature, without a brain, is not. You will not find this simplistic and fundamental formulation in the NYer’s idiocy.

OK, I’m nearly done. But the article can’t even keep things straight within a paragraph. Check this out:

“Shewmon has given a diagnosis of brain death to roughly two hundred people. He is measured, formal, and precise. When I asked him what he thought of the media coverage stating that Jahi would die imminently, he paused and said, “I sit back and let it play out.” He laughed, harder than I would have expected, and said nothing more.”

He is “measured, formal, and precise.” Then when asked a question he answers with informal, imprecise laughter and nothing more. This is him being measured?

Bottom lines: make sure your brain death exams are in accordance with both local and national guidelines. Make sure you are clear. Make sure there are no confounders. Use supplementary tests liberally. This article WILL make a hard job even harder - there’s always one Fredo in any family and they will have googled their way into this case which “challenges the very nature of existence” and everything you say. And the litigation risk is real. Shrewmon is ready to testify. Sadly this will also VERY much reduce organ transplants and increase the burden of health care resources.

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[kitsunepixie]

I read the article because I followed the case. I was also unhappy with its conclusions. As a pediatric neurosurgeon, I've seen some similar cases over the years. I've cared for many patients with baclofen pumps after HIE who may not be brain dead but are in MCS. One memorable case was a young woman who had occipital-cervical dislocation as a child and survived as a vent-dependent quadriplegic and an intact brain who later developed sepsis, and wanted over many years to die and only stayed alive because her father did not want to let her go.

 

[neglect]

I read the article because I followed the case. I was also unhappy with its conclusions. As a pediatric neurosurgeon, I've seen some similar cases over the years. I've cared for many patients with baclofen pumps after HIE who may not be brain dead but are in MCS. One memorable case was a young woman who had occipital-cervical dislocation as a child and survived as a vent-dependent quadriplegic and an intact brain who later developed sepsis, and wanted over many years to die and only stayed alive because her father did not want to let her go.

Performing symptomatic interventions on patients who cannot convey symptoms is really hard. Especially seeing this much suffering that the families are blind to, but being unable to address it due to their denialism. This obviously weighs on doctors and can make one get cynical - some of which is appropriate in terms of gallows humor, but can excuse a type of pathological reaction formation. I've been a member of teams who have cared for future PVS/MCS patients in the setting of families like the McMaths: religiomaniacs who see miracles behind every corner and volition behind every spinal cord movement. It can be impossible to balance honesty with professional care, but we've got to try.

And that's my objection to this horrible article. The writer will never be responsible or accountable for declaring brain death, diagnosing and grading and prognosticating after irreversible damage to the brain. But from the sidelines this article has made our jobs much harder.

 

[neglect]

The other thing I'd like to highlight is the truly toxic effect on health care provider's mental wellbeing in cases like this. Obviously this goes for everyone involved, but doctors are the most closely studied. And the data is not good. Any surprise that neurology has a high burnout? One thing that comes across in that article is that the doctors well meaning intentions were later represented in the poorest possible light, that we get second guessed by other doctors, by the New Yorker, and by patients, even when being as kind and honest as possible.

Here's the last survey in satisfaction. https://www.aan.com/PressRoom/Home/PressRelease/1515

These cases, the stakes, the second guessing, the medical ignorance all conspire against us. One article I read (and these come out all the time, so forgive me if it is from a different survey) found that next to neurology in terms of burnout is critical care.

For me, my take home messages are: avoid the hospital, only take the hospital in small doses, tailor your practice to do what you find meaningful. Take a break! Exercise! At work find meaning and maintain professional autonomy.

 

[neglect]

The subject in this case went to body death. She was brain dead, thus by definition dead. Now that her heart stopped, the family can more easily accept reality. Jahi McMath, the Calif. girl in life-support controversy, is now dead

Again, the New Yorker is a fine magazine, but they are not technically sophisticated. The author did our field a major disservice. And shame on those who prey on victims, flame false hope.