"Your brother is only mostly dead."
One has to suspect the status of the patient - drug overdose - played some role in him being written off carelessly to organ procurement.
Why don't hospitals with dying, indigent patients just transfer the student debt of the junior employees to the dying?
That would doubly suck. "I'm alive! I'm alive! Don't cut into me and why do I owe $180K?!?"
I feel like there's got to be a better story here. Organ donation can proceed after brain death, but what kinds of automatic reactions compatible with brain death are thought to be common? If it's the case that acceptably-dead donors sometimes thrash, that's actually a much bigger epistemic problem than "there was almost a donor who we thought was dead who wasn't." Brain death, as I understand it, isn't something we can measure, so is this a case of mismanagement (scary) or that death is kind of vague (worse)?
If it's the case that acceptably-dead donors sometimes thrash, that's actually a much bigger epistemic problem than "there was almost a donor who we thought was dead who wasn't."
Yes, but even if the epistemology is clear, the latter can still be a horrifying managerial problem if management is primarily incentivized by organ shortage.
I didn't like the way that article was reported. Yes, a mistake like that is (or would be) horrifying. But also, organized organ-donation "watchdog" groups sound like organized anti-vax groups,* and I wouldn't want to feed them by playing up people's fears. Lack of donated organs is going to kill people. *no, I haven't followed up on my suspicion, but I'm not the NPR reporters and editors who published the story. Tell me!
How would you report it better? Well, back off the "everybody's worst nightmare" stuff where the quoted person implies that people would be awake and aware while their organs were being removed. Emphasize that this incident, and AFAICT all the other rumored incidents, were near misses, where, whatever the bumps along the way, the system worked and nobody living (for their definition) actually had organs removed.
And just follow up. "I receive allegations like that with alarming regularity" says the spokesman for the watchdog group. OK, NPR reporters, ask the obvious question: how often? Where are the reports? What is the evidence for that assertion and what is the background of this "watchdog group.?"
And for the named person in the case, are any of the deficits that mean his sister has to care for him due to the mistaken declaration of brain-death, or was he, in effect, partially brain-dead from the drug overdose and though he could live he was definitely already compromised? That seems relevant. Instead we get photos of him dancing at a wedding and very little followup on his deficits and their cause(s).
8 last vs. 9 Yeah, what are the motivations of the actors is an important. I didn't feel like I got much of a sense of that from the article.
Well, back off the "everybody's worst nightmare" stuff where the quoted person implies that people would be awake and aware while their organs were being removed.
OK, but do you dispute this nightmare really happened?
It seems it should be considered a never event, like amputating the wrong leg. Even if there are mitigations you can imagine, it happening even once is a big blaring warning sign.
"Really happened" in the sense of the living person handed from doctors to technicians, I guess, but the doctors not catching it also seems a big warning sign. Too few barriers in the way.
We had this episode like 20 years ago.
12, 13 I don't dispute that it happened as described. However, there was no point at which I thought "that person is conscious and aware that he's about to have his organs removed."
"This person, who doctors thought was brain-dead, drew a breath" or "this person thrashed on a table" are a different level of functioning than the Poe-esque "I see them coming for my heart with the knives but am unable to speak to stop them!"
I mean, I don't know, but a conscious, aware person is a long way from someone declared brain-dead and who much later still has substantial deficits. I don't think that person was conscious on the gurney.
Well, back off the "everybody's worst nightmare" stuff where the quoted person implies that people would be awake and aware while their organs were being removed
It's not really any more reassuring if they were fully anesthetized at the time
16 Well that's your opinion
Emphasize that this incident, and AFAICT all the other rumored incidents, were near misses, where, whatever the bumps along the way, the system worked and nobody living (for their definition) actually had organs removed.
The problem with that logic is that after a certain point, people stop looking into the matter. I have heard it said that no death row inmate who was actually executed has ever been proved innocent.
(But yeah, I take your point: There is a high human cost to discouraging organ donation.)
13 gets at the heart of it: what are the procedures in place to make sure taking organs from alive people doesn't happen, and what broke down here? Post-wrong-amputation case there are certainly a lot of checks on "which arm are we operating on today?" by every attendant. What's the check here? Mostly I'm annoyed because I think a good article would have tried to explain that.
But also: how bold is the line between brain-dead and almost-brain-dead-but-heavily-sedated?
Very timid. The possible punitive damages are quite unnerving.
9.last: I think the degree of deficits/brain damage suffered by the patient are categorically irrelevant if they're short of death. That's a bright line about who's eligible to have their organs removed.
But I do think 9.2 is right: this was a near miss. My sense is that the safeguard is that every doctor involved in the patient's treatment as they approach brain-death, and then the procurement process after death, is independently responsible for assessing the status (as in, dead or not) of the patient/decedent, and they're unlikely to all be wrong at once. And in this case, way too many of them were were wrong, but the last two surgeons were right and the guy was saved.
That doesn't mean there's no problem, but it's hard to tell from the horror story if this is the tip of the horrifying iceberg, or if this was a giant fluke and the unlikeliest worst thing that's ever happened. You'd need to know about all the other bad incidents, and how good reporting of bad incidents is, and all that kind of thing.
I agree that this story is irritatingly short on context!
But also: how bold is the line between brain-dead and almost-brain-dead-but-heavily-sedated?
Do we have to make everything about Trump?
The problem is twofold - The current definition of brain death is somewhat vague, and there is mismanagement. Brain death as a concept was created specifically for the purposes of organ donation, and is defined as the complete cessation of all brain function including brain stem function. There is no universal standard for how to do the testing, instead each hospital has its own set of policies which can include various neurologic tests as well as sometimes a cerebral blood flow test. Every test can have false positives or negatives, and the quality of neurologic testing can be very operator dependent. Even a brain dead person can have what are known as spinal reflexes, in which a limb can move without input from the brain, and this has been known to happen. it is extraordinarily unusual for a brain dead person to be continuously "thrashing around". I have probably done close to 1000 organ procurements in my career and I've never seen donor such as the one described.
The mismanagement aspect of this is much more frightening, and I believe it is due to a confluence of events that have happened in organ donation and in the wider medical community. Medicine in general has become much more contractor based, with an increasing percentage of personnel working as contractors for relatively short stints. Contractors tend not to participate in quality assessments and the standard feedback loops in which process errors can be identified and improved upon, and so process failures are often missed.
More importantly, about five years ago the organ shortage was brought to the attention of our illustrious President Trump, who charged CMS with fixing the problem. Their solution was to pit each organ procurement organization (OPO) against each other in a zero-sum game in which the losers would be sold off to more successful OPO's. This has lead to increasingly aggressive and poorly managed attempts to get more organs. OPO's have started hiring a lot of MBA's and Six Sigma black belts who only care about system efficiencies. Like every other part of medicine, organ procurement does not translate well into widget production methods, and fear of losing contracts is driving the OPO's into greater efforts of standardization at the expense of respecting the real tension between potential donors, their families, and those who need the organs.
In response to chill, we have no idea what is happening to donors who are not brain dead, and will never know because they are definitely dead at the end of it. Donors are not anesthetized, partially because to do so would admit that we are not sure they are dead (and yes, this was a conscious choice by the transplant community). I have had no problem with that in the past because I had great confidence in the care and pride OPO's took in their work, but I am no longer so confident.
Brain death testing requires the removal of all sedation - if you need sedatives you probably aren't brain dead. As to LB's comment about the last 2 doctors - the procurement surgeons, by design, are expressly not responsible for determining the condition of the donor, because they have a vested interest in saying the donor is dead so they can get the organs. So except in a case like this where the errors were dramatically apparent, there would be no reason for the surgeon to question the brain deadness of the donor. I am completely reliant on the accuracy of the information given to me by the OPO team, and generally have no access to their medical records unless I ask to see a specific result. I do check to see that the appropriate testing has been done, consents signed, etc, but generally do not know their full hospital course.
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NMM to Fethullah Gülen.
I wonder if he was an organ donor.
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the degree of deficits/brain damage suffered by the patient are categorically irrelevant if they're short of death.
I agree, and this is really important.
Thanks, Dr. Whoops - that's really interesting and helpful.
I personally have been involved in 3 instances in which a case has not been stopped, and I believe the donor was potentially not brain dead. These cases were somewhat different than the one in the story, but I think the pressures to continue the procurement despite questions are coming from the same place. (I would like to say that I was not aware of the problem until after the cases were completed, and I am currently blowing the whistle.)There is no way to know how many of these cases are not caught, because if they make it to the OR they are definitely dead by the end of it. The normal safeguards depend on patients complaining about poor care, and this does not happen here for obvious reasons. I agree that the story left too much to the imagination, and the watchdog groups are often religiously motivated, but I don't think this is much ado about nothing.
this does not happen here for obvious reasons.
Haunting could work? Has anyone been monitoring transplant services for signs of angry ghosts?
Haunting would explain so much of my life... Currently, it's my dead career that is haunting the rest of the transplant world. And apropos of nothing, is anyone hiring these days?
At least UPMC was awful longer than I've been here.
Wow, that is not at all how things went down with a donor close to us. There was extensive monitoring over the weeks he was in a coma, followed a couple of days of final testing after his last turn for the worse, and then a day between the determination of brain death and surgery to recover his organs. It was comprehensively awful, but not because there was any remaining hope that he was still in there.
I have a distant relative that just got two lungs. I had thought that lungs was one of those things where you were supposed to have two, but could live with one if you had to.
Perhaps there was some research and testing of whether you get more people surviving longer if you give one person two new lungs or two people one each?
Probably. The new lungs don't seem to be working very well. I've heard he hasn't left the hospital in five months.
There might be an issue with space.
Space not an issue with three.
Contractors tend not to participate in quality assessments and the standard feedback loops in which process errors can be identified and improved upon, and so process failures are often missed.
In the Unaccountability Machine, Dan Davies makes this point more broadly about privatization in government services.
39-44: I think the issue with lung transplants is that lung tissue degrades really quickly. So my guess is that it's quite common for someone with one u/s lung and one that's slightly wobbly but still more or less OK to get two completely new lungs, just because you might as well, and otherwise the spare transplant lung will just go to waste. And of course a lot of the time the heart is a bit wobbly too, so they get the full three-piece suite.
(in case anyone didn't know, when you get a kidney transplant they don't take the old kidney out first, which means that the mean number of kidneys per person is slightly more than two; also they don't put the new kidney up in the same place as the old ones, but right down in the pelvic region. As far as I know there aren't any other transplant ops in which the surgeons go "idk just wedge it in wherever there's room" but Dr Whoops, and never has a pseud been more grimly appropriate, would be the one to ask.)
Word of the day: "graith" meaning, basically, stuff. Equipment. Tools, possessions, apparel. Also an adjective meaning "prepared, ready, kitted-out", and a verb meaning "to prepare".
25: is there nothing the illustrious former president cannot improve? Honestly if anyone was in any doubt, just "would you trust this guy with organs" ought to solve it.
48: this line does rather leap out at one. Much like an employee of a successful OPO would!
Their solution was to pit each organ procurement organization (OPO) against each other in a zero-sum game in which the losers would be sold off to more successful OPO's. This has lead to increasingly aggressive and poorly managed attempts to get more organs.
The implication that the less successful organ procurers would be sold off to more successful OPOs which would then proceed to remove their organs and use them for transplant was I think unintended by Dr Whoops but still excellent.
To be honest that entire passage would do very nicely as the opening scroll of some sort of dystopian SF comedy.
46.last: That fact freaked me out a surprising amount when Dr. W told me. They tuck the newly transplanted kidney into the crease of your groin at the top of your thigh muscle: apparently there's space for it there. And you can poke someone with a transplanted kidney and feel it.
You can probably feel any organ if you press hard enough.
Fracturing ribs to that end seems a little over the top.
Sorry. Science is a harsh mistress.
Yes, thanks to Doc Whoopsie for weighing in and truly validating how macabre the underlying story really is!
Well, back off the "everybody's worst nightmare" stuff where the quoted person implies that people would be awake and aware while their organs were being removed.
"Everybody's second worst nightmare after the worst nightmare of being conscious and feeling pain while your organs are removed"