Last hours of an organ donor
aeon.co
aeon.co
> After we moved her from the gurney to the operating table, the doctors and nurses, so used to taking care of living patients, stared at one another stupidly, as if not knowing why they had come together or why they stood around the table.
Sorry this strikes me as embellishing for the case of writing a story.
Background: I was a neurosurgery resident at a level 1 trauma center. I was involved in determining brain death (though the final certification was by an attending surgeon). I worked closely with the transplant team. I declared (normal) cardiac death many times. I had many agonizing conversations with families about withdrawal of care.
Anesthesia is a 4 year residency. Even the 2nd year anesthesia residents I worked with had more of an awareness and lack of naivety that this author shows.
And the OR teams were much more prepared and professional than this. They knew what they had to do and why they had to do it.
If there are other physicians here, I would love to hear your opinions, but this whole piece strikes me as overwrought and full of embellishments to make a certain point.
“On the one hand, being in perfect health, unaccustomed to suffering and therefore easily disconcerted by the thought of death, I was horrified.”
When one is a medical student starting anatomy working on cadavers I remember such thoughts being common. But by the time one had gone through years of medical school and then years of residency I would be quite astounded that one would still have such a reaction.
I could see that affecting someone differently.
My own personal experience with deceased donor transplantation is the pre-donor screening imaging to make sure there’s not a surprise cancer hiding for the recipient…
This had the flavor of being written by one of those types who’d rather write breathless blog posts about taking care of patients than actually taking care of them.
If you’ve been to medical school, you know the type.
I saw that reaction to death exactly two times during morgue drop offs: once from a younger L&D nurse—although I think it was more the inside of the morgue walk-in creeping her out—and once from an ER nurse with a 9 year old (asthma attack). Never from any doctor, although granted I almost never saw any doctors at all at that shitty community hospital. I don’t think it really stops being weird, I think it’s baked into our brains just like arachnophobia in some people, but I’d be concerned if an OR team, let alone a transplant team, were sitting around in silence like that. Usually they listen to the radio.
It’s fairly common for people to be paid by special interest groups and lobbyists to put their names on ghostwritten articles. It’s what got Amber Heard in trouble. I could see it happening to doctors.
Yup, creative writing.
Newspapers (and employers in general) can now do similar filtering, if they want to, thanks to social media. If you're not committed to pushing a desired narrative, and willing to spin anything to fit it, then you're not getting hired. And given the state of society today, it's unclear if a newspaper with objective or diverse reporting would be able to compete against the current batch of confirmation bias delivery services.
The first half of your comment provides a sufficient reason why something resembling journalism stays alive: readers want these stories.
What does this have to do with democracy, and what's the causal chain that goes from democracy (or the zombie of democracy, I guess) to keeping journalism in suspended animation?
> Six hours she had been officially dead. Six times had the hour hand on the clock moved – and she had lain dead.
It all starts with the title. What they describe is not the "Last hours of an organ donor". The last hour of the organ donor was spent in a car. They had an accident. After the accident they were in pain, fear and distress. We don't know the exact details but after some time people trying to help arrived. There might have been firefighters extracting her and paramedics trying all they could to save her. They transferred her to a hospital where they might have tried even more advanced things to save her. They failed. That's the end for that person. That was the "last hours of the organ donor". The process described in the article is not the last hour of her. It is beyond that.
> Indeed, she might even wake up and look at us, I fantasised. She might be raised from the dead.
If this was written by a real doctor I'm concerned that they are not mentally fit to practice this speciality. This article reveals that they don't have the right emotional constitution to perform the job without harming themselves.
> Simply put, there was no risk of malpractice, as my patient was already dead.
This again is wrong on so many levels. You can still ruin the organs. You can in fact kill many people during this procedure. Not the one under the blade, for that person is already dead. But the ones waiting for the organs. Will they be able to sue you? Probably not. So they are right there is no "risk of malpractice lawsuit" , there is still a high risk of malpractice.
I am more familiar with the emotional toll organ donation takes on potential recipients who are basically waiting and hoping for someone young and healthy to die in a tragic accident that they might live.
Because of the focus of this piece, I will leave this link to two previous comments of mine:
https://hn.algolia.com/?dateRange=all&page=0&prefix=false&qu...
However a German study in 1992 of 47 heart transplant patients found no substantial personality changes[1].
If this was a real thing, then you would expect to find it fairly commonly.
Wonder if it could be prion transfer instead?
I doubt anything like that was the author's intent, but who cares? Theirs is the first, not the last, of the hands which shape the text.
[1] Source: A family member recently retired after working in the OR for more than three decades.
I have not had good experiences with doctors. More often than not, I have experienced doctors' being wrong about my health status, and recommending treatment that ultimately does me more harm than good. How could I trust that same class of people to make as important a decision as this, knowing it'll be luck of the draw which one I get the day of some fateful accident? Even if I can name the person finally responsible for authorizing taking my organs, they're going to be doing it trusting the judgment of whichever doctor happens to be on shift.
We also can't know if--and if so, how often--they get it wrong. As the author mentions repeatedly, we can't know when "brain death" is "real death," or whether the medications given to preserve organs prior to cardiac death actually cause "real death."
It's the most important set of dice I can possibly roll. How can I make that bet? How can I bet that these people will accurately assess when I'm dead, even if I were to remove potential conflicts of interest from calculation entirely and grant that they were purely well-meaning? Even if the chance of being wrong were miniscule, the consequence to me of being on the wrong end of it is total.
I wish we could find a way to revive organs after death rather than having to keep them in a quasi-alive state. I would love to donate parts of myself so other people can live, after I'm done using them to live.
After.
I feel mostly the same way, but kinda think that the doctors who decide if I live or die will do so whether or not I’m an organ donor.
It’s statistically more likely to die before the change of a shift, or before the weekend, or (more cynically, and less scientifically backed) before tee-time. People are people, and they make mistakes and have biases and get tired even if they went to med school for X years.
So, If I’m close enough to be an in someone else’s book for some silly reason, at least it means somebody gets to live if I’m an organ donor.
What if they're wrong and I'm not actually dead? I certainly would be after my usable vital organs are removed, but what if I wasn't before?
I can see the argument, what kind of life is it really if all you're doing is lying on a table, nit conscious and not moving for the rest of your life? Maybe you'd rather not live at that point anyway.
But on the other hand, what kind of death is it to be cut open and have all your organs removed?
For organ donation the organ removal doesn’t kill you. They take you off of life support equipment keeping you alive first. Basically it’s the same way you would have died if it weren’t for extreme modern medical intervention.
Either way, you should communicate with your loved ones about what you want to happen if you’re diagnosed as brain dead. Ideally memorializing it in writing. It’s hell to have to make that decision without knowing what the patient would have wanted.
It’s not the largest of the concerns involved but (if you haven’t) you might also want to consider the financial and mental/emotional cost to the people having to take care of you.
This sounds biased (because I hold biases) but it’s not intended to convince. We had a family member on a ventilator recently and it sucked. But at least there were plans put in place before it happened.
Is that not the case?
They absolutely do not do this. You're kept on life support until the very end because it's important to keep the organs oxygenated. You're also not given any anesthetic because it's presumed you're completely brain dead and unable to feel anything. Given our primitive understanding and testing for brain death, I'm not comfortable with that.
Edit: Accounts like this one do not comfort me: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6880062/
The linked article is about doing just that. Anesthesia for brain dead organ donors is the standard of care.
edit: I admit I didn't read the article, I get queasy reading about that sort of stuff.
Well, this is reassuring. I'll need to bring the subject up again as I was told they weren't and that I was being silly and wasteful wanting it.
I nominally have a Primary Care doctor that works for a large health care org - nonprofit that pays its CEO ~$18M/year. When he was new and had few patients, he took time and initiative. Since then and especially after Covid, his attention to detail has dropped and his bosses increasingly dictate what he can and cannot do. He has to refer specialists within the health care org if they have that specialty. On a couple of occasions he has suggested I go to a specialist but he has no names to recommend. He is perfectly happy to be a salaried employee where the nuts and bolts of running a practice are taken care of by his company. He won't say how many patients he has on his roster but given the time to get an appointment it must be in the hundreds. The front office pushes Urgent Care whenever they can which dumps the whole concept of a doctor who knows you into the toilet. Pay a premium (natch) for someone who doesn't know you and doesn't give a damn (see the reviews).
He is required to type 90wpm into the Epic system which prompts him on what to do during the 10-15 minutes he is authorized to spend on me. I am fortunately alert and functional when I have seen him but when that is no longer the case, I am well and truly hosed.
If by Direct Primary Care you mean "Concierge medicine" where one pays a private practice Doctor a yearly fee for improved access, I tried that as well before the guy above. The doctor was a big talker when selling his practice but he was scatterbrained, unfocused, and inept in actuality spending more time talking about his extreme politics than actually paying attention during the exam and my questions. I bailed after a physical exam and followup.
Before that I had Kaiser which is beneath contempt.
Every doctor, medical org, and insurance talks up the relationship between patient and primary care but once you're in, it's a f&*king joke. There are no success stories I can find among my coworkers and acquaintances. We're all on the same stinking sinking ship.
This year is my year of recovering from that experience. It's costing me tens of thousands of dollars.
I'm glad you really like your primary care doctor, really, but no it won't. They're still slaves to the broken system they work for (insurance) and they're still overworked and underprovisioned.
> Not only will that doctor actually care about your health continuously
I think "care" is being used too generously here. Their job is to _be aware of_ your health. They don't "care" about it, necessarily.
> but he will
I can't help but point out this use of "he"
> who will treat your issues with similar care once you mention that Dr. SoAndSo referred you as his patient
This is again not true, but again, really happy this is your experience.
> I can't help but point out this use of "he"
What about it?
There’s absolutely nothing wrong with using correct English.
Granted, if they want to refer you to anyone else, your insurance may be involved, but not a few of them also have arrangements with those "health sharing ministries" where the patient cash pays for any procedure with the assistance of other people in the health share, which again saves enormous amounts of money by skipping the insurance system.
I've also had both experiences that correspond to and directly oppose your take on the church donation plate, so I'm curious if you're aware of data about this, or if we're just comparing personal experiences.
Of course, you also need to be lucky enough to get a good one.
Culturally, we have made "science" and "scientists" everything (apparently losing sight of the fact that "science" used to describe a method for testing hypotheses, not a set of conclusions about the world that result). "Trust 'the science.'" "Scientists say..."
We also do not want to talk about death, ever, for any reason. We only make it through the day by ignoring the fact that we will all die.
If we tell ourselves the expertiest experts will be the ones who will take our lives into their hands, we can just barely stop worrying about death long enough to get on with life.
But if you point out that these are smart, methodical, but also fallible, ordinary humans who get things wrong sometimes and make mistakes when they're tired or hungry, it shakes people a lot more viscerally than when you say the same about, say, an accountant. You're questioning the dogma of the day, and you're shunned like a heretic.
Every doctor I've asked about this has dismissed my concern out of hand as if I'd just said vaccines cause autism. I simply cannot trust that my wishes would be honored, and thus my answer on the 'organ donor' question is no.
In the end we are all expendable, and whether we live another day doesn't really matter. I think some people forget that reality and get too wrapped up in their own survival. That's not to say we should just give up, but at some point it's time to move on.
There are several patients who have been declared brain dead--and even scheduled for organ harvesting--who later recovered. [0]
People who believe as a premise that brain death is real death can reply all day that these people were just misdiagnosed and were never actually brain dead--and maybe that's true!--but when I'm considering myself as potentially the person on the table, we're back to my original point, that we're trusting the doctor to decide whether I'm actually dead, and the risks are way too high that the doctor will be wrong for me to roll those dice.
I would like to assure the author that there is little to no risk that "AI" will perform that job any time soon, though. It's handy for certain things but those of us who use it every day know how limited it is, and will be for a long time.
1. a personal account of the procedural and philosophical weirdness of treating a body with a dead brain but otherwise-alive organs as simultaneously alive and dead
2. a criticism of the anticipated role of artificial intelligence and its perceived lack of bedside manner
Article #1 is compelling. One of my relatives is an anesthesiologist and I'm tempted to reach out to her to ask whether she's ever treated an ASA 6 patient and (if so) what her own thoughts are on that procedural and philosophical weirdness. Brain death is something that fascinates me on both those fronts - stark evidence that the line separating life v. death is fuzzier and more context-dependent than a lot of people would want to admit. The possibility for a body to be living while the organ responsible for what we usually call "personhood" is permanently dead is a centrally-shared influence behind my views on everything from abortion to animal rights to artificial intelligence to the afterlife. What even is death if pieces of us continue to live on separate from ourselves?
Article #2 doesn't feel as compelling. It seems to come out of nowhere, and I don't think its premises are particularly well-founded. In particular, the conclusion in the last paragraph:
> AI promises to elevate healthcare; but, to the degree that it replaces doctors and nurses, it also threatens to depersonalise patients and to wash off their distinctive colours until everyone has the same drab tint.
I don't perceive AI as the thing that's doing that. That depersonalization was a foregone conclusion the very moment someone came up the idea of privatizing healthcare. In the case of organ donation specifically, that depersonalization is more than offset by the repersonalization of those organs inside of someone who needs them; organ recipients and the loved ones of organ donors alike express all sorts of feelings of connectedness through those donated organs - as if the donor, at least in some sense, continues to live through the recipient. Indeed, a part of that donor's body does continue to live through the recipient, and there's a poignant beauty there that no amount of corporate-driven distillation of patients into insurance records and HL7 streams can ever hope to "wash off".
> I don't perceive AI as the thing that's doing that. That depersonalization was a foregone conclusion the very moment someone came up the idea of privatizing healthcare
AI is the apotheosis of that.
The shovel that digs a mass grave is, at the end of the day, just a shovel.
Sometimes doctors do perform whole blood transfusion which does not have the blood plasma removed. This has the chance of increasing hormonal levels temporarily in the recipient. However, the body will quickly compensate and bring levels back to normal. Even if not, the hormones will still degrade and lose their effectiveness over time.
Side note: everybody has both male and female hormones in their body, at different levels. These levels can change a lot depending on your age, genetics, menstrual cycle, or even the time of day. As long as there is no prolonged increase in the levels of a particular hormone, there won't be any abnormal effects.
The article has very emotive language, and not in my opinion the mindset of any doctor that has long left in their profession.
I can't speak for non-UK donation, but the bar is so high in order to be able to donate tissue. Maximum 4 hours from being declared DBD/DCD and retrieving tissue. Even then, if someone has expressed a lifelong wish to donate, ticked the box on their driving license registration, carries a tissue donor card... Their next of kin can say no, and that's final. 75% of potential donors don't get to be donors. With a growing list of ~3000 kidney recipients, 300 get donated annually. (I'll hold my hands up here, these figures are what it was in 2018 when I left)
It's still a morbid topic. The donation specialist nursing team (who do an incredible job) are called vultures as one of the nicer nicknames. Doctors [can] do bias training to improve patient family responses to the donation offer, and most of them haven't, and exhibit unconscious negative reactions when talking about it, putting them off.
But that person isn't alive; they're not being murdered. Instead, they have the chance to save lives through the use of a body part they can no longer use.
If you want to save lives: talk to your families about your wishes. If you're ever up for the chance to change 10, 15, 20 lives, it will be too late to tell them about it.
But on the topic of being an organ donor, I would be lying if I have not personally struggled with this. I fully understand the struggle and the need for it. But as someone who has a ton of anxiety about death, enough that I take medication to deal with it and it is regular topic with my therapist.
I am also an atheist, so I believe that when this body dies I am dead. So I also recognize that any thoughts about, "how will I feel once dead" or "fears of regrets once dead" don't make any sense whatsoverver logically.
But I say this because, I still have that voice in the back of my head saying. What if we are wrong about death. What if I am still aware of what is going on even at "brain death". I have the same thoughts about cremation. This causes me to spiral about being an organ donor.
I find myself almost every time I need to renew my license debating on switching back and forth, and have even done it a few times with this feeling of shame for even thinking that I wouldn't be one.
This feels like one of those things that logic and emotion really don't match up and I can tell myself all day long about how being an organ donor saves lives.
Even reading this and writing this is causing me to spiral a bit.
I am really, really grateful for the experience, because I have completely lost my fear of death. If I hadn't woken up, it wouldn't have mattered (to me) at all: I was gone. As an experience, it was easy - because it's a complete absence of experience - and as it relates to my day-to-day experience of life it's like a category error.
Naturally, I'm afraid of dying - I mean, like, debilitation; dependence; pain. Those sound unpleasant - and to the extent I've experienced them, really are. But the non-existence part of death? I won't be there to worry about it, so why should I worry about it now?
(When I've posted something about this on this board before, I've had push back about how I didn't really die, so my comments aren't relevant. All I can say is that my first-person experience (in contrast to my medical state, which, sure, not the same thing) was, in every way I can think of, indistinguishable from (thankfully temporary) death.)
So, I dunno if a third-party trip report would have meant anything to me ahead of time, but I hope it does you. It's caused my own emotion and logic, as you put it, to align. I hope, internet friend, that you can find a way to get to the same place.
The subject is interesting enough but I feel like I’m trying to find a recipe in one of those cooking sites also acting as chef’s diary.
That's almost certainly not what happened in the room but is the author blurring his almost literary account with reality. It's a very common almost manipulative style in newer journalism when writers want to contrast their emotional state vs an allegedly harsh reality.
I see where you're coming from and perhaps what I meant is something closer to 'build things up rather than tear them down'. You've got two conflicting opinions. Theirs and mine. Inquire inside the article to see which of us is a worthy recommender of casual content to consume on the internet
I would 100% sign up for organ donation if it could either add a score bonus to me or my immediate family if we should ever find ourselves on the waiting list. Heck, I'd even donate blood or plasma more often too if they'd have some minor bumps.
Profit motive seems to generally be counterproductive to health.
If people will donate plasma etc to get "points," this potentially encourages people to donate bad blood into the blood supply because they expect to need an organ someday.
I don't know how we might a/b test something like this to see what actually works, but people have good reason to be skeptical of profit-driven or personal-gain driven processes for things of this sort.
Ban the person from donating blood if the blood is bad.
It's a meme that homeless people sell plasma and are also alcoholic. You see jokes about stuff like that in TV shows or whatever.
I don't know about you, but I don't really want my blood supply to primarily come from homeless people or relatives of people with genetic disorders at high risk of needing an organ transplant. The relatives may not have the disorder but may be carriers and may have health issues they aren't disclosing if their goal is to get points for their deathly ill loved one.
Boy do I have news for you: today's the day you're going to save someone's life! https://learningcenter.kidney.org/spa/courses/resource/becom...
From them:
> If you donate at a transplant center that partners with the National Kidney Registry and for any reason, need a kidney after donation, you will be given priority for a living donor kidney.
https://www.kidney.org/transplantation/livingdonors/what-exp...
Sure I remember my relatives talking about that in some long ago conversation.
NOTA ruined the ability for an organ marketplace and created the resulting shortage. A lot of people have a visceral dislike for the idea of this stuff. They rationalize this with arguments that are easily rebuked.
Here's Matt Yglesias on the subject https://www.slowboring.com/p/solving-problems-by-letting-peo...
Selling organs sounds ghoulish and horrible to most people for a reason. They likely don't realize that's exactly what's happening behind the scenes - if they did, they'd think that was ghoulish and horrible as well.
Hospitals don’t build and staff themselves any more than grocery stores or utilities do. Organs don’t harvest and fly themselves to the point of need unaided…
If people can make a living (pun was accidental) doing this, it’s more likely to exist in a vibrant way when I or someone I love is in need of it.
Everyone in the organization transplant process except the donor benefits. And what do we have to show for that injustice? 8000 people a year dying waiting as the article states, not to mention insane costs alone due to dialysis.
tl;dr: you cannot crank the painkillers up to eleven and still donate.
What I'm doing instead: donating my body to a medical school, which they can then chop up (either the students, or to sell off pieces "for science"). This allows me to implement a custom and pain-free exit regiment (an organ-destroying cocktail of fentanyl, morphine, and ketamine).
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Sweet dreams, ya'll.
No one is denying painkillers in order to produce organ donors, nor is it even practical: you would have to be on intensive life support at the time of brain death in order for it to be even considered.
EDIT: Like your statement seems to read as though your mother wanted to donate, but couldn't have voluntary euthanasia if she did (except again, if she was that awake then it wasn't going to happen unless she suffered brain death and was on life support) so your conclusion was...in the event of a sudden, traumatic brain death on your part you instead don't want organ donation to be an option?
This is exactly what happened.
They don't crank the painkillers up - in fact no doctor will do this because it's legally murder.
People in comas aren't on painkillers unless they're medically induced (i.e. burn victims in recovery) because the goal is for the patient to wake up. You can always push morphince once they do.
Her [sudden, at 60] stroke was massive, but confined to only her left hemisphere. She was intubated (against her DNR). Through prior agreement, this was a "terminate me" condition. She was not in hospice care at the time, and still worked 50+ hours per week. "If you make me retire [because of my health], you might as well kill me," she had recently told me.
>if you're brain dead, you don't need painkillers and ... aren't on them
False. Prior to my arrival (as pre-arranged death angel), the hospital had induced knockout via massive sedatives. My first action (before viewing the PET scan) was to stop these, which caused her right brain to "wake up" — which is terrifying because she still knew who I was (her son, there to kill her), but could not speak. Upon reviewing her imaging, I decided that "she had met her criteria [to die]."
>they turn the machine off and you just die
I further helped this by instructing attending physician to turn up the fentanyl ("to eleven"), remove her breathing systems, and then I smothered her with my bare hands.
>They don't crank the painkillers up - in fact no doctor will do this because it's legally murder.
False. See above. Jurisdiction may very, as will each situation.
--
I wish you well in your enjoyment of life; Mom lived well, and you (and I) should try to, too.
Do you distinguish between "helping to die" and "killing (with consent)"? Or is the former a nicer way to say the latter?
I ask because I think most people would be viscerally uncomfortable making a statement like, "I killed my mother," even if "at her request" was added to the statement, but the way you say "smothered her with my bare hands" suggests you might not be as uncomfortable with such a statement, so I'm curious if there's a reason you framed it that way or if you just use a variety of descriptions interchangeably.
When I first read about donated bodies being exploded, I thought "wow that's really fucking noble of the deceased," cause I knew how many intelligent researchers (and society!) benefitted from this "abhorrent stuff." I still believe it's beneficial (and not disrespectful), however horrid.
My only real gripe is that third-party hackers make all the money off the cadaver parts, and not the begrieved family..." people should also IMHO be paid for their blood donations.
If it’s the longer variety I’m curious how you arranged that. I know hospice is about easing the pain to a certain degree but my understanding was that they wouldn’t go to the next level (accelerating the process) as that would seem to violate the Hippocratic oath.
Likewise I know there are places where assisted suicide is possible but that’s more the one-and-done variety.
Also since I’ve used the S word and had a (young and healthy) friend die by suicide, I’ll also say please reach out to a hotline if someone reading this is feeling suicidal.
Thank god we were, and had a plan for her unexpected demise.
Talk with your loved ones, nobody ought'a suffer unnecessarily.
I really balked at this and other similar statements. I for one don't want people to waste their time looking after my dead body; I'd prefer that doctors spend their limited time offering care to those still alive.
I am curious about this: what was behind the change in the definition of death? Is brain death actually the death of the brain — or was the definition of death changed in order to justify harvesting organs from the living?
Has anyone diagnosed as brain dead recovered?
Edit: for that matter, why are we so certain that consciousness and life exist only in the brain? The entire body is full of neurons, and as the article notes the body — which is to say, the human being — reacts to the trauma of organ harvesting in much the same ways one would expect a living human being to do.
The way AI is shoehorned in is just bizarre… let’s wait until the medical field has figured out “AI” to unfuck their phone trees before we wring our hands about sci-fi surgery robots.
What? AI does indeed "loom over" many parts of medical practice, but dissecting cadavers is not one of them.
However, the author is apparently an anesthesiologist, which does seem like one of those roles that could be mostly replaced by an AI (read signals in, write output out).
Anesthesia is probably one of the last specialties that would be replaced by robots and AI.