Thursday, December 26, 2013

Why do misconceptions about brain death persist?

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.

UPDATE: December 27, 2013

According to the San Jose Mercury-News, the family says it has found a facility willing to provide long-term care for the girl. They want doctors at the Children's Hospital to perform a tracheostomy and a gastrostomy (semi-permanent feeding tube), which they have declined to do because it is futile.

The child's uncle is quoted, "It looks like we may have found a miracle to keep Jahi alive and to give her another fighting chance to wake up." I'm sorry to say that is not going to happen.

Also, the original surgery was much more than just a tonsillectomy. The girl underwent a full obstructive sleep apnea operation consisting of the following: adenoidectomy, tonsillectomy,  uvulopalatopharyngloplasty (UPPP), and submucous resection of bilateral inferior turbinates of the nose.


Anonymous said...

Reading the reader comments on the website of the local major paper, it is obvious that many posters - an educated, well-read bunch - cannot distinguish among brain death, vegetative state, coma, or even just critically-ill on a ventilator.

About the cabin of events leading up to this partulilar case, from some of the news stories it sounds like the child had more than a tonsillectomy. She had UPPP and turbinectomies as well.

It is hard to say what happened in the PACU. Since the hospital will almost certainly settle, the details may never be made public.

My guess is that the airway was lost among the bleeding, edema, and probable preexisting difficult airway.

In general, and not necessarily related to this case, I think most clinicians are too slow to establish a surgical airway (the exception being trauma surgeons). Of course, they should be rare procedures, but when indicated: even non-surgeons should just do it.

Skeptical Scalpel said...

Anon, thanks for commenting. I agree with everything you said. I appreciate your letting me know about the extent of the surgery. I have updated the post to reflect that and the other disturbing development.

Skeptical Scalpel said...

This is from a surgeon. He was unable to post the comments himself:

""Ethics experts still have unfinished discussions about what is to decide whether someone is dead. In practice, however, things are different, and this case should raise no doubt.

"I had a thoracic surgery teacher, who performed lung transplants, that once said that after brain-death, in about 24-48h, systems starts to collapse, due to loss of control of several vegetative functions. I find it awkward that she still has vital signs 14 days after brain-death. I confess that's a subject I never studied deeply.

"Another interesting topic is naming it "routine" surgery. In all great series of all procedures there is always someone who suffered a very devastating complication and even death. Often we cannot tell which patient is the unlucky one. I never say to my patients things like "it's a very simple procedure", "it's very safe", "easy and/or quick", I always emphasize that there are risks - we are taking them for a specific benefit expected."

Thanks for the comments. I agree that there is no routine surgery.

Anonymous said...

I always tell my patients that there is no such thing as a routine operation when you are on the business end of the knife

Anonymous said...

Before everybody begins to scream at me, I'd like to ask, "Who is paying for this little girl's care?" What insurance company is supporting the actions of the continuing care of this poor child? Something tells me there is much more than "emotion" guiding these decisions.

I remember SO many cases of patients who would come to the ER with terminal disease (e.g., metastatic lung cancer with brain mets, s/p radiation--now presenting with perforated colon) who, because Medicare will pay, the family wanted "everything done."

Or another case, in residency, of a 73 year-old-veteran, bilateral LE amputee with multi-infarct dementia, a LARGE sacral decubitus ulcer, presenting with a rupturing abdominal aneurysm. The family INSISTED "everything" be done. The reason: This veteran, who'd never seen the inside of ANY of these relatives homes, and was confined to a veterans' care center, was receiving a $98K/year annual pension (this was in 1990's), and upon his death, the pension terminated. The FAMILY was spending this guy's funds like water.

A feeding tube and tracheotomy are awkward, here, in this child. I suspect we do not know the entire details of this case--as the media NEVER gets it correct--only contributing to society's misunderstanding of "death" and how we deal with it.

Anonymous said...

An interesting clinical question is how long a body can be supported after brain death. My ICU experience is that within a day or so, vasopressors are needed to maintain blood pressure. Of course, this was in the context of pending organ donation.

Google search shows that a pregnant woman was maintained for over 3 *months* after brain death (to allow fetal maturation).

Skeptical Scalpel said...

Good comments all.

It is unclear who is paying for her care. One article says her insurance is covering it. I doubt that is true, but who knows.

Regarding how long a brain-dead patient will last on the vent, it depends on the mechanism of injury. As you point out, it can go on for months. There's a similar case in Texas going on right now. A man wants his comatose pregnant wife removed from support. It's not completely clear to that she is brain dead, but that's what some reports say. Texas has a law that a pregnant brain dead woman must be kept on a ventilator for the baby's sake.

Vamsi Aribindi said...


We definitely did not study this at all in my neuroscience unit, and I suspect we will not truly cover it all that much on the wards either. From reading several sites, I learned that the family was hoping a Dr. Paul Byrne, a pediatric neurologist, would see Jadi. I looked him up, and found this article.

Granted, I'm not putting a great deal of stock in what Dr. Byrne due to his background and other views (he seems to oppose ALL cadaveric transplants and has a rather absolute 'right-to-life' viewpoint). Still, he does make some uncomfortable points about the changing criteria for neurological death (30 different guidelines since the Harvard criteria) and general lack of agreement.

I wonder what kind of medical interventions and support the girl's body is receiving. With brain death the hypothalmic-pituitary axis should collapse, and the lack of cortisol and ADH (among other things) would be lethal unless replaced artificially. If this girl is getting them, who's prescribing those medications? Can you prescribe medications to someone who has been declared dead?

One thing that does strike me though: if the girl's family was going for a malpractice lawsuit, they would have pulled the girl off of life support immediately for an autopsy. The signs of surgical malpractice would only grow more difficult and unclear with time and the healing process. Their lawyer must have informed them of this. It is to their credit that they choose to hope for their child's return over any expected payout, though granted that such a payout would be quite small in California with it's tort reform cap. Ironically, the trial lawyers' lobby (Consumer Watchdog) used the case in their e-mails for funding support. Since children do not have wages or dependents, the most the family could recover would be $250,000 for pain and suffering if Jadi died. If Jadi lived in a brain damaged state however, the hospital may be on the hook for millions for a lifetime of care. Consumer Watchdog was arguing that this gave Oakland Hospital an incentive to see Jadi 'die'.

Vamsi Aribindi

artiger said...

I'll also step out on the politically incorrect limb for a moment like one of the Anons above. This child had sleep apnea at 13, but does anyone know her BMI and overall health status (I haven't been able to find any details about that yet)? I am just asking because that seemed like a lot of surgery, and if the OSA issue could have been weight related, had that been addressed before surgery?

Certainly, it's tragic, and it must be difficult to give up on a child. Until we focus more on dealing with end of life issues during med school and residency, this is going to continue, unfortunately. That is, unless our celebrity crowd starts doing a lot public service announcements to "educate" our public.

thethingspatientssay said...

I have never heard of an insurance company that would be willing to foot the bill for such a thing. In my area, they give the family 24 hours of grieving before stopping payment for CCU care. Getting them to pay for an LTAC after THREE doctors declared brain death would be simply unheard of. The fact that no accepting facility name has been provided to the hospital makes me doubt the veracity of the claim. I suspect it a ploy by the family to buy more time. Sad situation.

NeuroTrumpet said...

"It looks like we may have found a miracle to keep Jahi alive and to give her another fighting chance to wake up"

Hmm. It seems to me that a miracle would be if she were to spontaneously wake up, fully neurologically intact, without the aid of intensive devices.

Anywho, here's a great 9and recent) post from Steve Novella at ScienceBasedMedicine that can shed some light on the above questions:

Anonymous said...

She seemed kinda chubby going by this picture here
I wish there was explanation why they chose to treat it with surgery as extensive as that in the first place. Did other treatments failed? Was the condition life-threatening as to necessitate immediate surgery?

Ganesh Puttu said...

hmmm...two issues are interconnected here....on the first - the unwillingness of the family to accept brain death....well, if think from a patient (layperosn) point of view- the fact that their daughter- a 13 year old kid dying in what they assumed was routine procedure must be a big given enough time to get over their shock and grief they might come to make the sensible decision....

which brings me to the second issue here? who was the as@@#$ responsible for convincing the parents that this is just another "routine" surgery? i keep saying and saying--literally shouting form the streets- a surgery/any surgery is an invasive procedure against a human body-- there is nothing "routine" about it.....things can go wrong sometime and for no easy reason we can explain.....a tonsillectomy unlike the popular misconception of being an easy procedure- is just about one of the riskiest ora-pharyngeal surgeries with its proximity to the carotids.....every youngster going through his ent rotation is told the scary stories about how tonsillectomy patient bled to death on the operating table.....and most remember it throughout their lives.....the few who take it easy often find out why.

and finally, obstructive sleep apnea has several non-surgical assisted breathing devices now.....why opt for such radical surgery? shouldn't that be explained too? for all said and done dont forget we have here a 13 year old child who is dead.....and as a doctor who fights for every life - it hurts when we read about preventable deaths

Skeptical Scalpel said...

Thanks for the series of great comments.

I chose not to address whether the surgery was indicated or not, because we have absolutely no information about it other than the fact that it was a rather extensive procedure.

I appreciate the info about Consumer Watchdog. When I googled that organization, I could not verify that it is solely backed by the plaintiffs' bar. It's unclear exactly who is funding it.

I don't think we have heard the end of this sad case yet.

Chuck said...

Damn, Doc, this is informative. You and other medical professionals draw sage conclusions about this. Unfortunately, I suppose, the chances of viable transplantation of her organs probably is lowering every day now. Truly a sad story. Thx especially for revealing what appears (to this engineer) to be the complex extent of the surgery. I take it that this part of the body is extremely "vascular" and hence prone to bleeding? Great blog. chuck

Anonymous said...

I have not seen massive bleeding from a tonsillectomy because the carotid was hit. Has that ever happened?

I am also unaware of any case in the modern era in which a tonsillectomy bled out in the OR.

Most of the bleeding complications occur post-op, including after discharge. The cause of mortality and severe morbidity is usually loss of the airway, not massive blood loss.

Tragically, the hospital in the current case had a case 2 years ago where a young girl (non-obese) also suffered hypoxic brain damage and now is alive with minimal brain function after a tonsillectomy (nothing else).

Beth said...

I have worked as a critical care nurse and as an organ procurement coordinator for an OPO. It's disheartening to see the public's inability to distinguish between brain injury/coma and brain death.

In practice, I found it was helpful for families to go see a brain flow study--it's very instructive and includes them in the process. I never wanted there to be any question or doubt in their minds which built trust. It was always fine with me if they stayed in the room for the apnea tests too and neuro complete exam.

In news footage I saw the Stanford neurologist's notes and paused my computer screen. Jahi's lab work looked normal and her ABG pre and post apnea test were what you would expect.

My guess is Jahi remains on IV fluid, electrolyte replacement and possibly vasopressin (Her mother made mention of a BP medication in an interview and vasopressin was our go to medication in donor cases). Like all of you, I'm surprised we haven't heard of any VS instability from her family-- I have to keep reminding myself this is a 13 year old heart and the vent management must be exceptional.

The only good to come from this is maybe people will discuss their wishes with loved ones and ask more questions as patients before consenting to a procedure.

Skeptical Scalpel said...

Chuck, thanks for the comments.

Anon, I'm not sure about the carotid injury question. Since just about anything can happen, it probably has. I saw that article about the previous case. That poor child is alive, but barely.

Beth, thanks for the update on Jahi's condition. I hope this sad case does raise awareness of the issues, but I doubt that it will.

Anonymous said...

Thanks for the comments. I've talked with others, and we understand that the girl is brain dead (or basically gone). What we aren't seeing a lot of is why it happened, and how she's still alive (ok for those of us more medical savvy). We would have thought that keeping her alive would give a better idea than an autopsy. That appears to be untrue here. I know this is going out on a limb, but would someone mind explaining why that would be so? As in a medical stance/POV. Certainly learned a lot more points here than lawyers and newspapers. Then again, sticking my nose in ClinicalKey, PubMed, UpToDate, certainly has helped more than anything else. :)

For the record, virtually everyone in my family knows or has written down instructions on what to do. I'm finding more hospitals and docs offices are doing that. My state does have a place where you can put that info and it be made available. Would be good for all states, Medicare/Medicaid, etc. do that.

Skeptical Scalpel said...

Anon, she is not "still alive." she is dead. Brain dead = dead. Her heart is beating which does not mean she's alive.

I agree we don't have any details on why she became brain dead. The story will eventually come out because California is very open about revealing why complications like this happen. It may take many months though. I am reluctant to speculate about that aspect of this case. I am not sure what an autopsy would contribute, but I hope it is done for the sake of completeness.

Anonymous said...

So in keeping with the theme of "skeptical" why don't we look at the brain death protocol. Does anyone know the sensitivty and the specificty of the protocol? (I understand this would be impossible to really determine) Does anyone think these are both 100%. These tests/procedures are conducted by humans and interpreted by humans, but are we to belive that they are free of error and bias? I think the general public thinks that the EEG is just a flat line like drawn with a ruler and that there is no movement by the body at all. I recall watching this being done as a med student (granted I had very little perspective, experience or knowledge of neurology or the issue of brain death at the time, not that I have a whole lot more now) and seeing a lot of spikes on EEG being written off as artefact, and a lot of movement written off as reflex (not that they weren't correct but my point is it not obvious to a casual/lay observer that the person is dead) I am not a "vitalist" by any means but sometimes the lunatic fringe has a kernel of truth in what they claim. Is there a possibility that the whole brain death concept was developed to help us feel better about harvesting organs for donation from a body with a beating heart.

Skeptical Scalpel said...

You make a point that some have raised. Not everyone agrees with all the criteria for brain death. However, in this case the child has been judged brain dead on several occasions. Society has lived with this concept for a long time. There does not seem to be a lot of sentiment to open a new discussion about the propriety or specific criteria for brain death.

Anonymous said...

Well, the circus continues.

The family now has until Jan 7 to file an appeal. At this rate we may revert to the medieval definition of death: putrescence.

Skeptical Scalpel said...

Anon, thanks. I had heard that news. How could one not have?

KevinMD cross-posted my piece on his site. There are about 10 more comments there if you haven't had enough of this story. Here's the link

Les said...

Now I'm confused. The hospital is saying Jahi is brain dead but her family is claiming she moves in response to their presence. However the hospital claims that these are involuntary movements. Can a brain dead person move? Do they have reflexes?

Les said...

"The girl's uncle told reporters Monday that Jahi moves when her mother speaks and touches her. Sealey also said that a pediatrician has seen Jahi and has sworn she is not dead.

When asked about the girl's possible movement, the hospital spokesman, citing privacy laws, said he would not comment directly on any claims the family makes.

However, Singer said it is "quite common" for the muscles of brain-dead patients to move, stressing it's "not a sign of life.""

Moving is not a sign of life? Are these movements some sort of spinal reflex?

Skeptical Scalpel said...

Les, yes, they can move and have reflexes.

Les said...

@Skeptical, thank you. I didn't know about this.

Isobel Carr said...

Google Lazarus Effect (but only if you have a strong stomach). It's entirely possible for a body to move after death. And Jahi is legally dead. The coroner's office has already issued a death certificate dated Dec 12th.

Skeptical Scalpel said...

Isobel, good points. Thanks.

atticus said...

I am angry at the lawyer for just prolonging this family's suffering. I am sure he understands what brain death means and if a miracle did happen..she would not be their daughter but a shell.
I was wondering if the family expects the doctor or hospital to pay for all her health care bills? It is not cheap for full care.
I also wonder if anyone brought up about donating long as her body is working will all or just some still be viable for some one else?
I blame the lawyer...he knows the child is gone. Movement happens in death!! Shame on the lawyer!

Skeptical Scalpel said...

Atticus, I agree about the lawyer. I wonder if he knows better and is just trying to make a name for himself or does he believe in what he is doing? The case goes on. I just read that a judge is allowing the family to move her to another facility.

Anonymous said...

From the pictures on TV, Jahi appears quite obese, perhaps morbidly so. This almost certainly played a role in her sleep apnea. I wonder if this was not pointed out to the family, and a weight loss regimen suggested, but it was unsuccessful. If so, this is another example of patients seeking a drug or a procedure to correct a medical problem that could be successfully addressed by changes in lifestyle. (ex., many cases of type 2 diabetes.) Thus, an admittedly-difficult lifestyle change with essentially no risk may have been foregone for a surgical procedure with low, but definite, risk.

The family's insistence on maintaining life support is either a case of denial still being a river in Egypt for them- not surprising if Jahi's weight indicates a family pattern of addictive behavior & codependence, and/or a general lack of education & knowledge regarding medical matters, including brain death. There may be a guilt component, as well, if they realize their failure in helping Jahi lose weight ultimately brought her to what proved to be a fatal surgical complication.

Skeptical Scalpel said...

Thanks for commenting. I am reluctant to speculate on whether the surgery was indicated. We simply do not have enough information.

I also don't know what is driving them to keep this going. It is very sad for everyone involved.

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