Yep. I'm jumping on the bandwagon.
Everyone and their mother has weighed in on this case. Medical people, religious people, higher education-type people, conspiracy theorists, analysts, pundits, specialists, and people who are just plain stupid and shouldn't breed.
Sprocket Trials has compiled an amazing list of all the relevant shit having to do with this trainwreck of a case. I don't plan to be that thorough. If you want to dig through case documents and such, that's the place to go. Well researched, accurate, and very well written blog, there. And not just about Jahi. They write about other shit too.
I also don't plan to argue endlessly whether she is or isn't brain dead. She's dead. I've read Dr. Paul Fisher's report and the supplemental report from Dr. Heidi Flori, and even the deposition of that quack Dr. Paul Byrne that clearly references another doctor discussing the fact that Jahi had Diabetes Insipidus which, while not in and of itself indicative of brain death, solidifies the fact that she was indeed brain dead when taken with all of the other evidence.
This is what I want to talk about: the clearly uneducated and medically ignorant** media perpetuating misinformation and the idea that laypeople know more than us about medicine.
**ignorant, in this case, meaning simply that they have no education or idea about the stuff they report on. Not in an insulting way, although I have to really restrain myself from angry name-calling sometimes.
Because as elitist and condescending as this sounds, we know more than you do. We can look at someone and see the likely progression of their illness based on sound medical evidence and experience, whereas you look at them and hope they get better. Hope that we make them better.
This doesn't mean that we know what decisions to make for you or your family member. No. You guys can choose whether or not to have a surgical procedure, or whether or not to go through chemo, or to remove the ventilator from your 80 year old grandma, or to elect for palliative or comfort care rather than curative treatment. You guys know better than us when it comes to making those decisions for your family. But it's up to us to educate you as far as your options go so that you can make rational and informed decisions, and sometimes intubating your 80 year old grandma with COPD exacerbation and CHF is not a reasonable option.
Sometimes-- no, actually all the fucking time-- it is NOT A REASONABLE OPTION to keep a brain dead 13 year old on a ventilator.
In the beginning of this debacle, nearly every news outlet and the McMath family continually discussed the removal of "life support" after the "routine surgery" she had. Don't journalists research anymore? Since when is a tonsillectomy/adenoidectomy, a uvulopalatopharyngoplasty and a bilateral turbinate resection on an obese 13 year old with prior surgeries and a high likelihood for comorbidities considered routine? Especially with a pre-scheduled stay in the Pediatric Intensive Care Unit at a world-class hospital?
People who undergo procedures at an Ambulatory Surgery Center or as surgical outpatients in a hospital are considered to have "routine surgeries." Jahi's wasn't routine. All of us medical professionals know this. But yet the public, lemmings as they are, hear from the media that this was supposed to be a simple in-and-out thing and form opinions based on irresponsible and incorrect reporting.
Then later on, the media started reporting on other people who supposedly were brain dead and miraculously came back to life. Again, media people. Do your fucking research. Or better yet, have medically trained people write news articles about medicine. One kid in England that the media and other laypeople wave around like a goddamned flag supposedly had a tragic horrific accident and was declared brain dead. Was he really? So, he fully met all the criteria for brain death and was diagnosed at the appropriate time under the appropriate conditions (because yeah there are set clinical criteria that have to be met for the diagnosis to be valid) and miraculously came back to life like Jesus?
So either one of two things happened:
1. The doctor came in and told the family that he could possibly be brain dead or the injury could progress into brain death and it might be a good idea to withdraw care because who knows even if he does survive how much function he would retain, and the family didn't understand fully and freaked out and found another doctor, OR
2. He was diagnosed as "brain dead" too soon after his traumatic brain injury and it was a mistake.
I've seen more of #1 than of #2. Here's an example: I had a little old guy being released from the hospital on Coumadin for his new-onset A-fib. I told him that he needed to remain consistent in eating things like green leafy vegetables, because eating those things would affect his weekly lab draws, which his doctor would use to adjust his Coumadin dose. And he understood and did the whole teach-back thing, and I felt confident that he had assimilated the information. But then I overheard him telling his wife that he was never allowed to have spinach again. People, especially adult learners, don't assimilate information well.
So do you think it's a case of a doctor making a mistake (slightly likely) or the family-- who are in an intense emotional state, highly stressed and worried about their child-- not understanding (really, really likely)?
Moving on. So later, the media starts talking about Terry Schiavo. Karen Ann Quinlan. Jesse Koochin. They start mixing up "brain dead" and "vegetative state" and "coma." They reported on these things with about the same accuracy as I would have if I wrote about carburetors and pistons and drive trains, which is fucking none. They are not all different words for the same thing. They are completely different, with different associated levels of functioning. And so people hear about Terry Schiavo and her vegetative state and think "Well, she got better!! Maybe Jahi will too!"
Yeah, no. Irresponsible fucking reporting. More irresponsible reporting is allowing the McMath family unrestricted airtime, during which they said that the hospital is starving her, they wanted to take her off the ventilator while she was alive, and oh hey look her foot is moving when it's touched with ice so she's clearly alive, so on and so forth. Did the media give any doctor or nurse as much air time to speak generally about brain death and coma and PVS, spinal reflexes, the futility of giving tube feeding to a dead person, the fact that the hospital didn't "starve" her because of TPN and normal saline and electrolyte replacement and the fact that I seriously have had septic post-op gut surgery patients with necrotic bowels who haven't gotten tube feeds for two weeks and didn't starve to death because, especially with intravenous nutrition, the body can go for a surprisingly long time without "food"?
No, they didn't. And so the media perpetuates this bullshit to the masses, who then go on to mistrust hospitals and doctors and nurses and then look to fucking nutjobs like Jenny McCarthy to get their medical advice.
Then here come the uneducated opinionated commentators. "Children's Hospital killed another little kid with the same surgery." "Children's Hospital wanted her for her organs." "The doctors wanted to kill her because racism." "Killing her was cheaper than keeping her alive, they're motivated only by money."
First of all, does anyone know if the same surgeon performed the exact same surgery on that 4 year old who died in her car on the way home? Did anyone look?
Did anyone mention that organ donation, at least in California, isn't even mentioned to families by the doctors or nurses caring for the patient and instead all donation is coordinated by an outside entity? And that the hospital doesn't get any kickbacks or perks or even a say in where the organs go? Did anyone bother to research this?
Did anyone bother to mention that Children's Hospital is in OAKLAND for Christ's sake?
I will venture to say that removing her from the ventilator would actually be cheaper. Yes. For each day that Jahi remained on that ventilator after her official diagnosis of brain death, the hospital was not getting paid because no insurance company is going to pay for futile care of a dead person. They had to eat the cost of all of her expensive and world-class ICU care. Money and resources which could have been better utilized in other areas. This part is true. Overhead is something we all need to be aware of.
But I'm telling you right now, if you come at me and tell me that my patient care is driven by money and not by my deep and steadfast emotional commitment to my patients as their fierce and loyal advocate, I will bust you in your motherfucking mouth. And so would 99% of every other medical professionals out there. Because fuck you.
Ok, deep breath, MoJo.
The problem now is the McMath family and their shyster lawyer will try and take this to court so that they can get some money from the hospital. And Children's Hospital-- ironically motivated by money but I guess it's ok when it benefits the family, huh?-- will probably settle out of court rather than stand up and say "No, goddammit, this shit is not okay." They allowed a family and the media to drag them through the mud, tarnish their reputation, and perpetuate mistrust of healthcare professionals and they will likely not do a thing about it.
So the one thing I want medical people to take away from this is, simply, STAND THE FUCK UP FOR YOUR PRACTICE. Be vocal in the face of misinformation, especially when it comes from The Almighty God of the People, The Media. Speak out against malinformation (h/t to Doc Bastard over in "Cameroon" for that one) (he's not in Cameroon, that's a joke) whenever and wherever you encounter it.
Because when a douchebag shyster lawyer says that families, not doctors should determine death and people AGREE? Abso-fucking-lutely not. Do not stand for that.
I am so very sad for the McMath family. Don't mistake my anger for lacking compassion. But I'm angry that this was allowed to go on for as long as it did. I'm angry that an Alameda County judge heard an argument that cessation of care for a brain dead patient violated a family's First and Fourteenth Amendment rights and agreed. I'm angry that a gag-order and federal privacy laws prevented a world-class hospital from defending itself. I'm angry that the media not only perpetuated bullshit information but capitalized on a family's suffering for ratings. I'm angry that a lawyer gave a family false hope. I'm angry that a shyster dickbag with zero medical knowledge is trying to set a precedent which would in effect make it so that I might possibly have to care for dead people.
I'm angry that some doctor- or more than one- put a trach and a g-tube in Jahi. I'm angry that she has a team of caregivers who are perpetuating this false hope. And I'm so insanely angry that a former hairdresser and a self-storage magnate are capitalizing on this family's grief and need for closure so that they can get money to open their inpatient facility.
I hope that once this is over, Nailah Winkfield can bury her daughter and finally grieve her loss.
Rest in Peace, Jahi.