Was Jahi McMath's Case -- Leading To Her Brain Death -- Preventable?
Terrific piece at the Pacific Standard by medical bioethicist Alice Dreger and Helen Haskell.
Dreger and Haskell note that though the attention for Jahi McMath's case typically focuses on what happened after her catastrophic brain injury, the risky surgery that led up to it warrants as much attention:
Jahi McMath was 13 years old when she was brought to Children's Hospital Oakland in December 2013 for a surgery to treat sleep apnea, a problem likely exacerbated by Jahi being overweight. Instead of beginning with less invasive approaches, such as prescribing a CPAP machine to facilitate breathing while asleep, an ear-nose-and-throat surgeon named Frederick Rosen recommended taking out Jahi's tonsils, her adenoids, the soft palate of her mouth, and other nearby tissues.This was a very invasive surgery, and Jahi began bleeding from the surgical wounds immediately following the procedure. Over the next five hours, apparently neither Rosen nor any other physician came to check on her, despite her family and nurses reporting continual and substantial bleeding. Jahi finally bled so much that she went into cardiac arrest. This is when doctors finally arrived at the girl's bedside, according to the lawsuit. Following two and a half hours of attempted resuscitation in which two liters of blood were drawn from Jahi's lungs, she was ultimately declared brain dead.
The hospital then pushed the family hard for organ donation and disconnection from life support. In the media, supporters of the hospital championed organ donation as a way to make this a story of salvation following a tragic outcome. Resisting disconnecting Jahi, the family came off looking scientifically naïve and selfish. Lost in many accounts was the uncomfortable fact that the hospital and surgeon would have to pay much less if Jahi were legally dead, because the hospital could not be held responsible for years of support for a disabled person.
Yes, this is true about the cost, but keeping a brain dead person alive is not a reasonable or sensible choice.
Dreger and Haskell write about the procedure -- which also left 8-year-old Rebecca Jiminez brain dead:
Tonsillectomy has traditionally been done for recurrent throat infections, but the efficacy of the procedure for this purpose has been seriously questioned for decades. Today it is increasingly used to treat pediatric sleep apnea. But it is not a well-tested treatment for that purpose, and the much more radical surgery Rosen opted to do in Jahi's case appears to be an extraordinarily invasive approach.
They want to see families informed about the rate of adverse events of a procedure.
I actually think that this is not enough -- that they need to be informed of our cognitive bias to believe things will turn out okay for us, so they can truly comprehend the risk.
Dreger and Haskell wind up with this:
And when [families] are harmed, they should have the right to quickly get the truth about that harm. Families like the McMaths need to be treated with compassion and justice, not branded by hospital public relations offices as abusers of a system of which they are, in fact, the victims.
Dreger has a terrific new book out, Galileo's Middle Finger: Heretics, Activists, and the Search for Justice in Science
My husband has sleep apnea (despite having none of the usual risk factors, sigh). When he was diagnosed, we looked into the various options and decided that the surgery just didn't make sense -- among other things, there was no real guarantee that it would work. It does work for some people, but we've known others for whom it didn't. So, on to the CPAP machine it was -- it adds some inconvenience, but zero risk and 100% reversibility.
Given the specific risk/benefit profile for the surgery AND given the existence of the CPAP, I can't imagine choosing it for a child, especially since there's no guarantee that if the child grows, the tissue won't grow back to some extent. Now, tonsillectomies/adenoidectomies themselves have relatively low risk profiles, and no one really needs tonsils/adenoids after a certain point -- but again, the older you are, the more you bleed, at least from tonsillectomies. My life was much improved by the removal of my tonsils and adenoids (though not for reasons related to sleep apnea!), and given my family history, I joked that I was going to check to see if my kids could have theirs removed before they left the delivery room -- but I can't imagine having that surgery done on a teenager PLUS soft tissue removal.
I can see why Jahi's family would have lost all trust in their doctors and hospital and anything that they recommended. It's a tragic case. Glad the details are being revealed. While I, too, know that true brain death is irreversible, it does look as though if the family had just gone along with having life support removed, which was the "sensible" option, all of the awful details of the case likely would have never come out. That also makes me wonder how many more of these cases have been swept under the rug. There's no way that this and the Rebecca Jiminez case are the only ones.
Also: In today's litigious environment, how moronic do you have to be to dismiss post-surgical complications in cases involving *children*? We're obviously not getting the whole picture here, but if the McMaths' allegations are substantially true, I'd argue that the doctors involved are too dumb to be counting rocks, much less performing complex surgeries. I feel sorry for the good doctors out there who get tarred by the idiocies of some of their colleagues.
marion at March 14, 2015 7:57 AM
My family has huge tonsils, consequently I and my siblings all had to have them removed as children due to recurrent infections. Both my children did too. Like could not leave them alone with a biter biscuit or a cheeto because they were gonna gag every time kind of tonsils. They were underweight and suffering from one infection after another. The difference post-surgery was remarkable. One thing that happened with them both - they quit snoring. The surgery that child had done, I saw a diagram that outlined everything removed including tonsils and adenoids - that was absolutely overboard. That's what happens when you go to a surgeon for a solution, they want to cut and cut. When in actuality that child needed a nutritionist to help her lose weight as a first line therapy.
gooseegg at March 14, 2015 8:12 AM
One of the problems with our litigious system, is the court is required to view any allegation as substantially true, for the purpose of filing a lawsuit.
One of the allegations going around the Internet was that Jahi's relatives were feeding her a Big Mac shortly after the surgery, when the doctors had ordered no solid food at all for a couple of days.
If this is true, ( and I am not saying that it is). It is most likely the proximate cause of the heavy bleeding that led to her death.
So however Ill advised the surgery was, if it was performed correctly, and of course, if the parents signed the required waiver because there is no such thing as *risk free* surgery, this may be a tough case to win.
Isab at March 14, 2015 8:15 AM
"One of the allegations going around the Internet was that Jahi's relatives were feeding her a Big Mac shortly after the surgery, when the doctors had ordered no solid food at all for a couple of days."
My dearest has a nursing degree, and one of her biggest peeves is the impenetrable stupidity of family members, who have no idea that some orders are not suggestions, that "it'll be all right" is almost never true and that rushing back to their idea of "normality" is about them, not the family member in recovery.
Grr.
Radwaste at March 14, 2015 8:49 AM
Marrion,
I have an uncle who suffocated to brain death in the ICU of a hospital. They pushed him into a corner and forgot about him till the next day. By then he was in an irreversible coma. Unfortunately since that is a state hospital there is no real legal recourse.
Ben at March 14, 2015 2:46 PM
In the months following the event I looked into all the details I could find since the story sounded extremely fishy. Everything that is in the press is from the McMath family since the hospital cannot comment (because of HIPPA reasons)--there is even a news bite from the hospital that they would love to share their side but the family will not sign the HIPPA release forms.
In short, I don't believe their narrative of the 'uncaring hospital docs/nurses who never checked on the patient' (although that is not to say this does not happen on a disturbingly regular basis).
I might understand if this were a small community hospital staffed with inexperienced workers. However, this is a Children's Hospital where the staff is vigilant about children. Additionally, post-operative bleeding is a known complication that nurses are trained to look closely for, surgeons will immediately bring to the OR and anesthesia will hasten to protect their airway from bleeding and establish good IV access. Also, Jahi did not just get her tonsils removed but also got a bunch of tissue cut out of the back of her mouth, called a UPPP, or cutting out the soft, dangly bits out of the back of your mouth. This too is known to bleed after surgery and is watched with equal attentiveness. Moreover, she was sent to the ICU afterwards which means the staff were already concerned about watching her even more closely (a typical patient will be sent to the floor after surgery since ICU beds are limited and expensive). Finally the Pediatric ICU is staffed with pediatric intensive care nurses who are some of the most caring and competent people I have ever worked with and will watch their patients like angry hawks.
What I think happened: post-operative bleeding happened, maybe after eating the apocryphal Big Mac, and was noted by the PACU/ICU nurse (and a post-tonsillectomy bleed with send a nurse screaming for help and make anesthesia and the surgeon crap their pants a little bit). This is always taken back to the OR as a life-threatening emergency; however, in this case there is a big black box in between what happened after leaving the OR and suffering cardiac arrest. I would wager the family disregarded some/all of the medical advice of the staff and either gave her solid food, initially refused a re-operation, and/or refused a blood transfusion, all of which would contribute directly to Jahi’s death. The family feels tremendous guilt about this and understandably does not want to ‘pull the plug’.
Doc Jensen at March 15, 2015 3:00 AM
It just goes to show that there is no such thing as a totally risk-free surgery. But some surgeries are a lot safer than others. Tonsils and adenoids, by itself, is pretty low risk. I'm of the age when it was done routinely when a child got to be 4 or 5. I had it done, all my friends had it done, and I don't recall anyone having any complications. It was so routine that children's books were written about it. (There was a big emphasis on the ice cream that you were supposed to get afterwards. In my case they brought me strawberry, which I didn't like. Really disappointing.)
Cousin Dave at March 16, 2015 11:11 AM
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