Brain death is still misunderstood by the public

On December 9, 2013, 13-year-old Jahi McMath underwent a tonsillectomy at a children’s hospital in Oakland, California. She suffered postoperative hemorrhage and became comatose. She was declared brain dead by doctors at that hospital on December 12th. This was later confirmed by a court-appointed outside consultant.

There are many issues surrounding this case. Was the tonsillectomy indicated? Some stories reported that it was done to improve her obstructive sleep apnea. Why wasn’t she successfully rescued from her complication of bleeding? I can find no discussion about how she could have bled so much without intervention in any article about the case.

But one of the most distressing aspects of this poor child’s demise is that despite many years of experience with brain death, it is still misunderstood by laypeople, the courts, and even some medical providers.

As of December 26th, 14 days after the brain death declaration, the child remains on a mechanical ventilator with apparently stable vital signs.

A lawyer for the family had petitioned the court for the outside expert’s consultation and to prevent the hospital from disconnecting the child’s life support.

After all this time, a judge has finally ruled that the hospital may remove the life support but not until December 30th to give the family time to appeal to a higher court.

What a shame. It is bad enough that this girl has died. But to realize that in 2013, society still cannot deal with the concept that brain death is “death” makes it sadder.

It may be a problem of terminology. When we say “brain death,” it somehow does not sound like real death.

The problem is compounded by other words used in this post such as “life support” and “vital signs.” These terms perpetuate the mistaken notion that life is still present.

The Harvard Criteria for brain death were written in 1968. That is 45 years ago. Why are we still debating this in court?

The answer is, we have failed to properly educate the public about this relatively straightforward fact.

It must be extremely difficult for this child’s family to accept that the girl is dead after what many have called routine surgery. I feel very bad for them.

Something that has not been mentioned in any report about this case is another issue that society has trouble handling — organ donation. Perhaps the family should consider this. Those who have been in similar situations say that donating organs gives them some comfort in that part of their loved one lives on and that someone else has been helped.

I hope the higher court does the right thing and declines to review the case and that the family can eventually find peace.

“Skeptical Scalpel” is a surgeon blogs at his self-titled site, Skeptical Scalpel.

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  • Skeptical Scalpel

    Well said. Real life medicine isn’t like TV medicine. We don’t always make the diagnosis in 43 minutes and sometimes people die.

    • Deceased MD

      It is a mystery how someone could bleed to death from a tonsillectomy. Did she have some rare bleeding DO? I am more interested in what happened here like you are. It is very sad whatever the reason.

  • PamelaWibleMD

    The intellectual discussion of brain death does little to help with emotional turmoil of sudden loss of a child.

    • Gibbon1

      I was going to say… I hosted a wake for an acquaintance who died suddenly. After it was over I went around tidying things up by myself before locking up. Her friends had set of a memorial with those Mexican votive candles. It was hard to blow out the last one. Personally I can’t imagine having a child in that twilight between life and death and being asked to blow it out.

  • FLMD

    This was not a routine tonsillectomy…. I really don’t like reading about hospital cases in the news. The family gets to say whatever they want and the hospital can say nothing due to privacy laws.

    Either way, the end result is tragic and I can only imagine what the family is going through.

  • Jason Simpson

    It is hard to fault the public for not understand what “brain dead” means when in fact many DOCTORS dont understand what it means either.

    Steven Thorpe (UK patient) was declared “brain dead” by 4 different doctors. Yet today he is very much alive.

    • FEDUP MD

      My understanding of the case is he had powerful sedatives on board during exam. If he really was declared brain dead than they completely ignored the criteria which excludes these being present. As you said, it is something which many doctors do not fully understand either.

  • Skeptical Scalpel

    It’s difficult to speculate on what caused the bleeding or why it wasn’t dealt with successfully. The facts will come out eventually.

  • Skeptical Scalpel

    You have a point, but now that the courts are involved, the hospital has lawyered up and everything will involve rulings and appeals. Common sense is out of the picture.

  • Deceased MD

    thanks for explaining that. It does seem like it will take a very long while before any facts come out on this and by then unfortunately the interest in the case will probably be forgotten by the public.

  • Skeptical Scalpel

    Thanks for the thoughtful comments. You raise many good points. So what course should we take? Should we just give up? Is civilization doomed? If this post enlightens one person, was it worth the effort?

    • Filo

      Sorry for the delayed response. Of course we shouldn’t just give up, I just think we may disagree with the source of the problem, thus we disagree with the effectiveness of education as a solution.

      What is the course of action that we should take? Education should always be a pursued and may those who are enlightened by it benefit from it. I just don’t believe education is the silver bullet.

      Why is it that physicians, the most highly educated and the foremost experts on these very topics, are highly discouraged form treating family members?

      Perhaps a certain amount of acceptance that people often respond and cope less than ideally in challenging and painful situations is the appropriate place to start.

  • FEDUP MD

    Your statement just proves the above title could also apply to physicians. It is perfectly normal for a brain dead person to do certain types of withdrawal from pain, even some more complex appearing movements. These are spinally mediated reflexes which never reach the level of the brain and are compatible with the cessation of whole brain function. I draw your attention to a very nice review accessible on pubmed where these are explained in detail for your further education. Perhaps you should have paid more attention to what the neurologists were trying to teach you rather than judging your perceptions of their motives.

  • FEDUP MD

    “Patients must lack all evidence of responsiveness.

    Eye opening or eye movements to noxious stimuli is absent. Noxious stimuli should not produce a motor response other than spinally mediatex reflexes. The clinical differentiation of spinal reflexes from retained motor responses associated with brain activity requires clinical expertise.”

    Evidence baed guideline update: determinining brain death in adults. Neurology, June 2010.

    One can withdraw from pain and be brain dead.

  • FEDUP MD

    I had my tonsils out 1 year ago tomorrow. I certainly was told by the ENT that life threatening bleeding was a possibility, albeit a very tiny one. Maybe he was just being exceptionally thorough as a fellow MD though.

  • guest

    Sorry, was it a UPPP or tonsillectomy?

    • rpachigo

      UPPP and tonsillectomy

      • guest

        Wow, I have never heard of that done in a child. Though I do know of catastrophic complications even from “routine” tonsillectomies.

  • querywoman

    I do not blame the family. At this point, blaming the hospital is pointless.
    People can die during or after any routine surgery.
    Brain death is a reasonably reliable diagnosis, but there are always a few exceptions.
    The family should not be badgered to donate organs.
    So her vital signs are stable? I’m not a doctor, but it doesn’t sound like she will blissfully die on the respirator any time soon.
    Sometimes society has to eat the cost of mistakes, and this may be one of those in which the courts rule we must.

  • Skeptical Scalpel

    I agree that the hospital has not looked good in this case. It would have been better if they had explained what happened, apologized, and offered a settlement.

  • Skeptical Scalpel

    I have no solution for the education problem. It is a very emotional topic and most people do not think about it ahead of time.

  • Rob Burnside

    An excellent post for many reasons, but primarily because it requires us to examine the source of our beliefs–medical and otherwise.

  • http://clarexanthos.com/ Clare Xanthos, PhD

    I think we have to look at the lesser of two evils here, and in my opinion, it’s far more unethical to prematurely switch off a machine without giving someone a fair chance of recovery. As I argue in my recent post, many mistakes have been made with brain death diagnosis. As such, I don’t agree with rushing to switch off life support in the name of ethics.

  • Jess

    That’s really fascinating, thanks for providing that link.

    What strikes me as the biggest shame is that all this is playing out in the public square, and I get the feeling the media is “feeding along” some of the controversy. In a more perfect world, this would be an intensely private matter handled between the family and the medical facility, and yes, a judge if required. But without the media circus.

    I’m just so sad for everyone concerned. I can’t see any winners here – except maybe the media, in winning ratings. Ugh.

  • KSEubanks

    How, exactly, do you ‘know’ the nurses didn’t check her vitals as they were supposed to? Mistakes were obviously made somewhere, but I’d be VERY surprised to find that the nurses simply didn’t do their jobs. This is not likely a case that deserves jail time or loss of licenses, it’s likely simple human error that caused this girl’s brain death. It’s easy to scream for revenge, especially when we (the public) getting ALL of our information from the media, but we might want to wait for actual FACTS before we point fingers and assign blame.
    And no, I am not a doctor or a nurse.

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