A small price to pay? The Jahi McMath case revisited

A few days ago I stumbled upon an article in the Huffington Post that somehow got under my skin (it’s called “Brain Death” at risk). It had to do with a story that made the headlines a couple of years ago, and that I had all but forgotten: the story of Jahi McMath, a thirteen-year-old who was left brain dead following a tonsillectomy. Still, seeing it pop back up reminded me of how even at the time the way in which the hospital had been pushing the girl’s mother to have her removed from life support had left me with a rather uneasy feeling, and the callousness of this new article –where there wasn’t an ounce of empathy to be found, and in which the author went so far as to propose turning to the Commerce Clause to enable Congress to take over– only served to compound that particular feeling, so I decided to do some catching up.

Now, before we go any further let me make it absolutely clear that I am as far from a pro-life zealot as you can get. In fact I am convinced that given the magnitude of the brain damage that child sustained, pulling the plug three years ago would have been an act of kindness. It’s just that I also believe in being honest, that as far as I’m concerned being pro-choice means respecting the right of others to make a choice that is different from my own, and that does include Jahi’s family’s reluctance to take the doctors at their word when they insisted on the fact that the girl was dead. Did I think they were right in their insistence that she was alive? No. Did I think that they should have been afforded a little more respect, and been given the time they needed to come to terms with their loss, rather than be dragged in front of a judge by the same team of doctors that had led to the girl’s questioned demise in the first place? Yes, but this is not so much about what happened three years ago, as it is about what is happening now because I have to say that, having spent the few days doing some research, my take on the matter has changed.

Does that mean I think that there’s any hope at all that Jahi will have any sort of significant recovery? Not really. What it means is that I am no longer quite so certain that her family doesn’t have a point when they claim she does not fit the narrowest definition of brain dead, the one the hospital was required to meet before attempting to remove her from life support against her family’s wishes. In fact I suspect it is the possibility that the girl’s family may actually have a point that has the medical/legal establishment shaking in fear.

To begin let me quote a from an earlier article that was published by the same Huffington Post, this one dating back to January 10, 2014 (you can find that one here):

[Laurence] McCullough [professor at the Center for Medical Ethics and Health Policy at Baylor College of Medicine in Houston] said he worries about the emotional, spiritual and financial damage that the parents will suffer. “Insurance doesn’t pay for dead people,” McCullough said. He also worries about the psychological effect of seeing the the girl’s body, which is already said to be deteriorating, continue to break down.

“Are there some living cells in the body? Not all the cells die at once. It takes time. But her body will start to break down and decay. It’s a matter of when, not whether.”

Jahi’s new doctors are “trying to ventilate and otherwise treat a corpse,” [Arthur] Caplan [head of the division of bioethics at NYU Langone Medical Center in New York City] said. “She is going to start to decompose.”

At another point in that same article McCullough is quoted as saying that there are no ethical issues in the care of someone who is brain-dead, because the patient is now a corpse. As for any facility that was willing to provide long term life support under such circumstances his exact words were :

Their thinking must be disordered, from a medical point of view. … There is a word for this: crazy.

Those are all rather categorical statements that leave no room for error, the problem is that three years later that same expert testimony comes across as utterly incompatible with the facts (and to that incompatibility we must add the family’s claims that in those years the girl began menstruating). That, I feel, leaves us with no choice but to call the diagnosis of death itself into question. So the next step would be to ask ourselves what is going on here. In that regard I can think of four possible explanations:

  • Jahi McMath is dead, but over the course of the past three years her body has behaved in a way that defies everything that is known to science (a situation that ought to elicit at least some scientific curiosity, but apparently doesn’t).
  • Brain death is not as irreversible as the experts quoted above would like us to think.
  • An honest mistake was made, and while it is undeniable that Jahi McMath sustained a catastrophic brain injury three years ago, describing her as being brain dead has been inaccurate all along.
  • A hospital made a very serious mistake that left a child in a vegetative state, and then did its best to bury the evidence by trying to talk the family into ‘doing the right thing’, and donating her organs, not really expecting them to fight back. When that failed said hospital found itself in an untenable position, and turned to the courts in a bid to get the girl off life support. To the horror of a complicit medical community, that too failed (her death is supposed to have been independently verified, but for obvious reasons that task fell on another member of the medical community).

Now, I do realize that option one calls for too big of a coincidence to be taken seriously (the one instance in which the family refused to follow medical advice turned out to be the one person whose body behaved in a way that was completely abnormal, and that’s without even taking the lack of curiosity into account); options two and three lead to some very uncomfortable questions as they cast some serious doubts on the doctors’ ability to accurately recognize neurological death in the first place, with option three being more plausible than option two; and option four sounds like something out of a conspiracy theory, not to mention that it depicts a scenario we would much rather not even consider, not when there is a very real possibility that someday we will have to entrust our own lives to that same medical community, but sticking with that one for a moment, I would like to quote the more recent article:

For a malpractice case originating in California, compensation is limited to $250,000 if the patient dies but there is no limit if the patient is still alive. For financial reasons, it would be in Ms. Winkfield’s best interest to have Jahi’s death declaration on neurologic grounds overturned.

That has been a recurring theme in the press’s coverage of this story: the portrayal of Jahi’s mother as either a desperate and deluded fool who is being manipulated by a cunning lawyer who has an agenda of his own, or a gold digger who is trying to profit from her daughter’s tragedy. Absent from those assessments is any reference to the fact that, if damages in a fatal case are capped, then the hospital has just a strong a financial incentive to keep that declaration of death from being overturned… and yet, while the greed issue seems to be at the heart and center of the attacks against the family, from its very title the “Brain Death” at Risk article points at a very different motivation, one that fits with the medical community’s stubborn refusal to even look into the matter pretty much from day one: what would happen to the transplant industry (and let’s not kid ourselves, it is most definitely an industry, one the author would like to see regulated by the Commerce Clause), if the current definition of brain death were to be successfully challenged, if a court of law were to rule that a person who had previously been declared brain dead by medical science was alive?

That is the nightmare scenario they don’t even dare to mention.

In fact while that article goes on and on about the family wanting a religious exception to be carved out for their sake, and how terrible an idea that would be, in an article dealing with the same case that was published by The Mercury News in July 13, 2016 (you can read that one here), there is no mention of a religious exception at all. It just says that the appellate court ruled that the child’s mother can try to prove to the court that Jahi is alive. That is the part of ruling that the medical establishment seems to be determined to fight with everything it has, not the straw man notion of a religious exception (after all, given that becoming an organ donor remains a matter of choice, there is no need for a religious exception).

The position that seems to be most prevalent among the medical establishment is that, if the finding of death were to be reversed, it would land a devastating blow on the transplant business, so much so that, the evidence be damned, the case shouldn’t be allowed to be reexamined. From their perspective Jahi is a pawn that must be sacrificed –or rather one that has already been sacrificed, so it doesn’t even count– but the thing is that, if that medical establishment wants people to become/remain organ donors, it has to be willing to be held accountable, and yes, that does mean that the it must be willing to take a long, hard look at itself when the possibility that a mistake may have been made emerges because at the end of the day creating the impression that they are cutting corners when it comes to ensuring that the donors are actually dead before they set out to harvest their organs is not the way to go if what they want to do is cut down on the number of people who die waiting for a transplant.

Three years ago they said Jahi McMath was dead, they said that her organs would soon decompose. According to the experts it was a matter of when, not whether. Back then I had no reason to doubt them. Three years later I think we owe it to that girl to find out what really happened.

14 Comments

  • acumenata

    Several corrections.

    1. Jahi’s family wasn’t dragged in front of a judge by the doctors. The mother dragged the doctors to court. She was the plaintiff in the 2013 court case and in all that have followed. The doctors and hospital were and are the defendants.

    2. There is no evidence that the doctors or hospital caused or contributed to her death. There are only allegations in a lawsuit that has made almost no progress in two years. Testimony in that case probably won’t be presented for at least another year.

    3. This does not defy everything known to science. There have been other cases of brain dead bodies kept on long-term somatic support. They have been thoroughly studied and reported in medical journals. The longest recorded case dragged on for 20 years. Comparing with those cases, Jahi’s body is behaving typically for a brain dead body artificially animated for this length of time.

    4. The documents submitted by the family’s legal team in their current court cases specifically state they do not dispute the original brain death diagnosis. Their claim is that the 2013 findings were correct but she has since improved. They have presented no admissable evidence to back up their claim that she has recovered from brain death. None of the practitioners who have submitted statements backing up thst claim have ever examined Jahi. They are individuals who do not believe in brain death and/or dispute the medically and legally accepted definition of life. The courts have rejected them as expert witnesses more than once. Their only other evidence is anecdotal claims by family members.

    5. No doctors involved in this case ever said her organs would decompose. The word they used was ‘deteriorate’. Medically, there is a big difference between decomposition and deterioration. Bodies in this state are never healthy or recovreing. However, they do not decompose unless infection or organ shutdown occurs.

    The mother is now claiming on social media that Jahi has been breathing above the vent for months, and is now holding a pen and attempting to write. If either were true, the alive-or-dead case would be immediately settled. Ask yourself: If Jahi were your child and you had bombshell evidence that would prove her alive today, would you sit on it for six months? Would you let your attorneys continue filing weak two year evidence to the court instead of the evidence that would win your case?

    The truth of her condition will come out if her heart continues to beat long enough for this to weave through the courts.The family has been granted a third opportunity to prove she’s alive. That gives the judge and the medical defendants the right to a conduct/order an in-person medical examination. One or both will.

    • cleasaal

      I really appreciate your in-depth reply, however you seem to have missed the main point of the post because the issue is not so much to defend Jahi’s mother’s position, as it is to express a deep discomfort with the media and medical profession’s attitude towards the case, where the prevailing attitude seems to be that any attempt to re-examine the question of whether the finding of neurological death was appropriate in the first place is unacceptable because it would pose a threat to the organ pipeline that fuels the transplant business. It is a position that is also openly acknowledged. The title of the Huffington Post’s most recent article is ‘Brain Death’ at Risk, a title that tells you everything you need to know about the author’s priorities. Those are the priorities I find so appalling.

      As you say, the case is currently making its way through the courts, and eventually that will lead to a new examination, though I admit that the fact that the medical community is fighting that examination with everything it’s got, and trying to delay it for as long as it can, combined with the fact that said examination will have to be conducted by members of that same medical community, makes me somewhat uneasy, as there seems to be a conflict of interest that cannot be fully resolved.

      As for me, and as I mentioned above, two years ago I didn’t question the medical findings at all, just the way in which the case was handled, but given how long it has been I do believe that the issue ought to be reexamined. I mean, what are we going to have here, a situation where Jahi’s heart stops beating when she is seventy-five and the medical community turns around and says ‘see, we told you she was dead all along’?

    • JBrown

      Thank you for a well put together article. You have shown compassion and respect for the family’s decision. I don’t know the true motive of either parties but as a mother and a genuine Christian, I believe that Jahi can rise again because God is able we just don’t know if He will or when He does wake that precious girl up
      As a mother I could not bring myself to give up on God or my daughters. I would fight like this family is until God give me the peace of mind and clear sign of what to do.
      I was faced with this decision with my birth mother. The Dr said to keep her on life support would extend her death, not her life. God gave me the peace to let go and tears ran FD from my mother’s eyes. That was the only time she responded to be us. I felt that was her way of saying goodbye because her organs were failing and she was not unresponsive to commands. They made her comfortable with morphine. She didn’t take her last breath until I left the hospital right before I boarded my flight.
      In contrast one of my sister’s suffered three seizures do to an infection she got following her surgery. A she went into a nursing home for rehab but they had t po rush her back to the hospital. Her voice rain went 30 minutes without oxygen. She was pronounced brain dead n I knew than she was gone because of our last conversation. I flew to NY from MO to say goodbye but my brother n be one other sister wanted to hold out so they fought with the medical staff. Again I am a practicing Christian n we have to recognize God’s decision on the matter. She was on a ventilator because she couldn’t breathe on her own, dopamine because she had no blood pressure and laying on a heated bed because she couldn’t raise her temperature on her own. Her fingers were black her toes were black n her eyes were literally melting away so it appeared as if she was crying. Fluid was leaking from her pores soaking her bed. My family wouldn’t listen to me because her heart was still beating so I prayed that God would give my family members peace. Her organs began to fail. Once her kidneys failed she went into cardiac arrest and her heart stopped. I was the only been one there from my family because it was on my watch. God put it to a stop and let her body go because her soul had already left to be back with God. I choose to pray for the family that God’s will be done and that God gives them peace be of mind and a clear undeniable sign as what to do. Jahi’s life is in God’s hand. Please stop being insensitive, cruel and judgemental. God bless that family.

  • Terri hodgin

    The only reason the mother wants her on vent is money! Did u see the things she got w the money people gave her on go fund me? Tattoo, expensive dinners, expensive watch! The reason docs described her body that way was because u have to give details in court. By the way have u been around the mom to see how she talks. This is a circus the mom created not doctors & she is still doing it by posting lies bout the girl moving, breathing on her own. My mom & dad were on vents & they had same reflex that she posted saying she moved on command which if I told my mom to move & kept camera going till she did then cut it down to exact time I said it I could have said my mom was alive. This woman has posted pics that are sic! Crossing kids leg sitting her up & saying my baby sat up today. That’s a sic person. She is no better than scamer in Africa who prey on people for money. And a brain dead is brain dead & the article describes what the writer seen in court papers! Truth hurts but in this case this lady nos the truth but is playing a sic game all for the name of money!

    • cleasaal

      I hesitated whether or not replying to this one was even appropriate, as I don’t want the tone of the comments to get too heated, and there is no nice way to say what I’m about to say, but at the end of the day I think your comment does go to the heart of the matter when you say that ‘she is no better than [a] scammer in Africa’ because that, I suspect, is the elephant in the room: the fact that Jahi is a black child, that this is an African American family we are talking about here, and that for the most part they don’t come across as particularly educated, which does play into the hands of way too many stereotypes.

      Now, let me make it perfectly clear, this is not an attack on either your person or your position, nor is it meant to be a defense of the family in question, or of the actions you describe, which I do find disturbing. It’s just that at times I do wonder if the media and the public’s responses would have been the same if Jahi had been blonde and blue eyed, if her family had been more savvy.

  • cleasaal

    Sorry it took me so long to approve your comments and reply to them. My net access has been extremely limited over the past two months.

    Anyway, what I find fascinating is not only the amount of venom that is directed towards Jahi McMath’s mother/family, but also the fact that most comments seem to ignore the main subject of the post above which was never meant as a defense of Jahi’s family but rather as a criticism of the behavior of the medical community in regard to that particular case. It’s about the fact that while the term ‘organ donor’ evokes all these altruistic notions the fact is that the transplant business is an extremely profitable one for both hospitals and drug manufacturers, and that there is a dread of anything that might be deemed a threat to that business model. That is why the Huffington Post’s article that prompted this post is entitled “Brain Death at Risk”, and it is that title, or rather the priorities it hints at that I find so disturbing (and keep in mind that what that article riles against is the fact that there’s even a case that might cause the facts to be reexamined, and call into question the initial diagnosis). Was a mistake made in this case? I don’t know, but I am willing to acknowledge the possibility that it might have been, and I do believe it is an issue that should be examined further. This has nothing to do with Jahi’s family –with whether or not they are likeable, or with what have they done with the money since– it has to do with the fact that doctors are human, and malpractice coverage wouldn’t be as expensive as it is if doctors were as infallible as we would like them to be.

    Let me reiterate that: this is not about Jahi’s family, it’s about the arrogance of a medical community that, in spite of the fact that their predictions regarding the imminent deterioration of Jahi’s body have clearly failed to materialize, refuses to reexamine the evidence for fear of threatening what is basically a business model, of putting the concept of brain death at risk. That is the part I find so troubling.

    You want to protect the organ pipeline? Then you have to make sure potential donors are confident in the fact that, should they face a catastrophic injury the doctors treating them will be doing what’s best for them, not seeing them as a bunch of spare parts.

    • Annette

      That’s a pretty insulting thing to say about doctors. I certainly hope you place more confidence in your general practitioners when you or your family members get sick.

      • cleasaal

        It’s not the doctors themselves I don’t trust, it’s the medical establishment as a collective, and the bureaucratic approach to hospital management in particular. It is an industry that treats patients as cattle, and in which profits reign supreme. Yes, the fear of malpractice is usually one that works for the benefit of the patient, helping prevent the most egregious of cases but there is a small subset of cases where the opposite may be the case, and one involving a child with a catastrophic brain injury –a child the doctors honestly believe would be better off dead than alive given her prognosis– as one possible outcome, and a dead child in a state in which the malpractice award would be capped at a relative pittance as the other would qualify. As I said, I do believe that Jahi would have been better off if her mother had agreed to let her go in light of the extensive damage she had suffered, and I don’t think the doctors expected her mother to fight them on that one to the extent that she did, but once they had said she was brain dead there was no turning back. The medical community was forced to go all in because they had too much at stake, and they knew they could show no signs of dissent. As the Huffington Post article put it, to admit that the question might not be as open and shut as it seemed would have put the concept of ‘brain dead’ at risk… and taken down the multi-billion dollar transplant industry with it.

  • Joan s

    My family was faced with a similar dilemma after an accident left my cousin with a damaged brain stem. He was not brain dead, but his brain could not communicate with his body and never would. They quickly made the difficult decision to allow him to die, a ten day process that was tough to watch. It was a very caring and generous act on their part: to allow him to pass on and give his small children closure. The selfish thing would have been to “help” him to live for perhaps years in limbo so they would not have to accept his death and suffer the loss.

    • cleasaal

      As I said, personally I think it would have been an act of kindness to let Jahi go three years ago, but being pro-choice means respecting the rights of others to make a different choice. The problem is that in the years since this whole situation has morphed into a monster with serious legal ramifications when it comes to the whole medical community and especially the transplant industry, and in that chaos Jahi herself has become little more than a footnote.

  • Deana

    Who are we to say what Jahi McMath’s family should do? I support their decision because it’s based on love for Jahi. Where others would walk away, they walk by faith. I pray for them as they struggle with the daily sacrifices. May God bless them!

    • cleasaal

      As I’ve said all along, being pro-choice means respecting the rights of others to make a choice different than your own, and as far as I am concerned that is basically what this case boils down to (that, and to some rather murky legal/medical issues that can have some serious implications in the long run)

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