Monday, January 6, 2014

The Girl is Brain Dead but the Emperor Has No Clothes

Oh, my, what a predicament.  Jahi McMath has been released from Oakland Hospital to the custody of the coroner and her family.  She has been issued a death certificate.  And she's being transferred to an undisclosed care center, where it is hoped she will begin receiving artificial nutrition.  This is the height of both irony and tragedy.

The comments by physicians and bioethicists in the CNN articles all harken to the idea that there appears to be no error, she meets criteria for brain death and thus she's "legally dead."  This misses the point.  Her parents don't care if she's "legally dead."  The legal definition does not comport with their own intuitions about death and her mother says as much.  She will accept that her daughter is dead only when her heart stops beating.  I can understand why a person may take this stance.


Consider that, if you didn't know how to do a brain death examination, you would have no way of distinguishing her from any other comatose person whom we send to a care center on life support.  Many people in the medical profession who are aware of this case appear to have misgivings because they perceive the family as being unrealistic about the girl's prognosis.  Personally, I consider this case no different, no more troublesome than so many other cases that we deal with all the time in critical care medicine, where the family's expectations are markedly divergent from medical professionals' expectations.  Is there more righteous indignation in this case because medical professionals feel that "the law has our back" in the case of brain death?  Is it unsettling that Jahi's family could go up against the law and win?   Does this represent a step backwards in the efforts of medical practitioners to educate the public about futile care?  Has the legal standing of "brain death" become precarious or vulnerable to future challenges?   Does legal backing and reinforcement serve as a surrogate for moral conviction and intestinal fortitude as regards prognostication and its communication in difficult or desperate cases?  Finally, can the outcome of this case cast doubt on the validity and certainty of a diagnosis of brain death? 

In regard to that last issue, we used to think that patients in persistent vegetative state (PVS) (another diagnosis along the spectrum between consciousness and coma) had no perception of the outside world - until we put them in an fMRI machine and told them jokes.  I was always taught that brain dead people all invariably die of complications within a few days or a week.  Jahi has lived three weeks after the diagnosis of brain death already.  I do not discount several possibilities that may explain her prolonged survival:

  • brain death leading to real death becomes a self-fulfilling prophecy if you never support brain dead patients for a prolonged time - thus our understanding of the prognosis of brain death is limited and potentially flawed
  • even if, in the past, brain death always lead to real death within a week or so, temporal changes in care could lead to changes in how long you can survive with "brain death"
  • the limited sample size of patients supported with brain death leads to confidence intervals around the survival estimates that are larger than we think, and outliers may surprise us
My devil's advocacy regarding this case has been misunderstood to signify that I have lost my own mind and am no longer a proponent of limitation of care in cases where care is of low, minuscule, or negligible value.  Not so, by any means.  But I am sympathetic to the notion that legal death based on a definition that was invented to enhance the supply of organs for transplantation may not comport with everyone's intuition about life and death; that individual value systems are sometimes markedly divergent and irreconcilable; and, most importantly, that if we are going to have any discussion that has a hope of understanding values that are divergent from ours, we need to open our minds.  Here, there has been no open mind on the part of the medical establishment.  It has been shouting "SHE'S DEAD, GODDAMNIT!  ACCEPT IT!"

Several questions I have not heard asked are: why did not the judge order life support to be withdrawn?  Why did not the practitioners simply exercise their legal rights and withdraw life support after the declaration of brain death?  What is the legal status of Jahi right now?  In what way does the law protect her or not protect her as a person or as a corpse?  Her existence appears to be legally ambiguous.

Finally, if the proponents of "brain death equals real death" are so confident in their construct of brain death, which leads to real death within days or weeks, then why do they care so much about this case?  If reality is as they conceive of it, Jahi will rest in peace (assuming she's not already resting in peace on the basis of brain death) very soon.  Why all the fuss?

I know only one thing for sure: in this Kafkaesque scene playing out before us, the emperor has no clothes.  And I think you know what the emperor is.

8 comments:

  1. Well I think this is the case that no one has seen before and therefore the sensationalism. If she doesn't herniate then we have all of the families who have pulled support second guessing the medical professionals and themselves, which they do in microscopic ways to work through their grief. Thereafter for years, you will now have families using this example and refusing to withdraw care in hopes for a little more time. You have the millions of dollars that will be spent in futile care, a fair amount of taxpayer money included. (The elephant in the room is that you will be strapped to a cross if you ever discuss cost, especially with family) And then you have the family second guessing their own motives when she actually does die, generating more anger and a need to sue everyone involved. Good point Scott, no easy answers, at least ones that will be heard.

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  2. Lenae I agree with your points.
    On a side note, notice in the CNN articles how the family objected to the hospital personnel referring to Jahi as a body or a corpse. The relationship was very strained. And the medical people just kept trying to foist the issue upon them

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  3. Here is a message I received and my response:

    Hi Dr. Aberegg,

    Thank you for writing about an alternative view in your post titled "The Girl is Brain Dead but the Emperor Has No Clothes." Can you please explain what you mean in the last paragraph with the "Kafkaesque scene" and the Emperor? At the expense of sounding ignorant, I will admit that analogy went over my head. Overall I found the post highly beneficial, and thanks again.


    Sincerely,
    Suleman

    Hi, Suleman -

    Thanks for contacting me.

    Franz Kafka wrote a book called "The Castle" which is a classic about a protagonist referred to as "K" who navigates a dreamlike world where things are just bizarre....

    "Kafkaesque" is a term to describe weird, dreamlike scenarios that are difficult to understand or ironic.

    Since there is a "dead" girl who is being transported about as though she is alive (and maybe she is, in some folks' opinions) I consider this a Kafkaesque or dreamlike scenario.

    "The Emperor Has no Clothes" is a reference to a short story by a Scandanavian writer that hinges on "pluralistic ignorance" - see http://en.wikipedia.org/wiki/The_Emperor's_New_Clothes . When everybody agrees that something is so (she's dead) when everybody also knows that it is false (she's alive), it conforms to this fable, which has become a common figure of speech, thus the title of the blog post.

    Please comment further on the blog if you have any more questions or comments or insights!

    Regards,

    Scott

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  4. It is not possible to withdraw life support from a deceased patient.

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  5. Hans Christian Andersen was the author of The Emperor's New Clothes.

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  6. There is a well-known (now retired) Australian brain injury specialist, Dr Ted Freeman, co-founder of the National Brain Injury Foundation.

    Treated as a heretic and forced to retire at the height of his career (publicly lambasted in parliament by the then national health minister), his theories of neural plasticity and his coma arousal techniques were eventually accepted, and became internationally recognised. He was later offered a public apology in parliament in an attempt to correct his professional status restore his reputation (once the theories of neural plasticity became more scientifically credible).

    Often, he would continue to work with patients that the medical community had given up on. This got him into a lot of hot water, as he disagreed with the prognosis of various neurologists. However, using his method, he achieved unthinkable outcomes, utilizing a collaborative approach fostering intervention from the patients’ family to facilitate in support and care.

    He was criticised for giving “false hope” (as I can see happening here). He justified this by demarcating between active hope and passive hope. (See links for details on this)

    Your point about outliers is salient. How can we rely solely on the central tendencies of a large group of people without taking into account individual dynamics and patient/family individuality? ...Together with the fact that we have to recognise the huge gaps in our current understanding of consciousness and death, and as you said “our understanding of the prognosis of brain death is limited and potentially flawed”.

    I guess my point is, you may be right, but not heard (or called mad).

    http://www.abc.net.au/local/stories/2011/01/25/3121098.htm

    http://bowralprobus.org/wordpress/wp-content/uploads/2010/09/Ted-Freeman.pdf

    http://apo.org.au/research/ted-freeman-and-battle-injured-brain-case-history-professional-prejudice

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  7. Still not dead from melted brains, as was predicted. The joke is on the establishment. Even Truog now has misgivings (probably because of his own biases - he thinks we ought to be able to take organs from living people). Oh, my. Oh, my Lord.

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  8. http://www.usatoday.com/story/news/nation-now/2016/03/21/jahi-mcmath-pronounced-dead-years-ago-healthy-new-photo-claims/82082798/

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