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I respect your feelings, I want to share mine.

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.

I think I'm more concerned about the cases when it's their actions that would cause my death. Like, when people are declared brain dead, it's common that the heart and other organs are still operating fine. As far as I understand, there isn't some hard and fast line where anything changes between "no detectable brain activity" and "let's take out the organs." Those events can be separated by minutes, hours, or days with minimal difference.

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?

One of my biggest fears is a “Johnny get your gun” (or Metallica’s ‘One’) scenario where I’m actually aware but cannot communicate it. That seems worse than death.

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.

The article made it sound like they actually don't turn the other devices off in case of brain death, because it's so much better for the organs that they be kept in as close to a living state as possible. If your lungs can keep moving air (even assisted by a ventilator) and your heart can keep pumping blood, it's better that they do so, right up until they're extracted.

Is that not the case?

>They take you off of life support equipment keeping you alive first.

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/

> You're also not given any anesthetic because it's presumed you're completely brain dead and unable to feel anything.

The linked article is about doing just that. Anesthesia for brain dead organ donors is the standard of care.

So they receive the same sort of anesthesia as a surgery patient? When I asked other doctors about this I was told the patient was given some things to control blood pressure, etc, but not anesthesia, as it would be 'wasted'.

edit: I admit I didn't read the article, I get queasy reading about that sort of stuff.

Yes, the same sort of anesthesia. You mention blood pressure in particular. Controlling pain, usually with opioids, is a huge part of controlling blood pressure.

>Yes, the same sort of anesthesia.

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 cannot strongly enough recommend you find and build a relationship with a Direct Primary Care doctor. It will totally change your relationship with modern medicine. Not only will that doctor actually care about your health continuously, but he will connect you with specialists in his own referral network, who will treat your issues with similar care once you mention that Dr. SoAndSo referred you as his patient. At the end of the day, for better or worse, doctors are people too.

My PCP is great but he isn't going to be the one deciding whether I'm dead enough or not dead enough.

Actually by far the worst experience I have had with doctors was the year I hired a DPC. I had such high hopes for that model, but she was just an awful, awful physician.

This year is my year of recovering from that experience. It's costing me tens of thousands of dollars.

I am very sorry that it cost you so much in pain and in dollars. I do sympathize with you that DPC/Concierge is a lot of hype along with the high costs.

As another point, my PCP moved to a concierge model a few years back. We stuck with him and couldn’t be happier with the situation. Finding a good doctor you trust and have a good relationship with can be hard, but very worthwhile.

I live in the greater Los Angeles area and could not agree less. Primary Care is in deep trouble and will only get worse.

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.

> It will totally change your relationship with modern medicine

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.

Don't know why you are getting downvoted. You are spot on.

I think the down votes are because "Direct Primary Care" doctors opt out of the insurance system. That's the point of the model. They collect monthly subscription fees instead dealing with your insurance company.

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.

Those "health sharing ministries" are a complete scam. They take your money and provide you nothing. Sort of like church and the donation plate, only they purport to provide a genuine service in the health care field.

Are there studies bearing this out? I and many of my friends have been part of them at various points and have had tens of thousands of dollars of care provided through them.

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.

> > but he will

> I can't help but point out this use of "he"

What about it?

Are all doctors men?

No, of course not — but the correct English third-person nominative singular pronoun for a human being of unknown sex is ‘he,’ just like the correct English third-person possessive singular pronoun for a building is ‘her’ and the correct German first-person nominative definite article for ‘Mädchen’ is ‘das.’

There’s absolutely nothing wrong with using correct English.

Ok buddy :)

> ... build a relationship with a Direct Primary Care doctor.

Of course, you also need to be lucky enough to get a good one.

I’ve been wronged by multiple doctors and nurses but I still get looks as if I’m saying that the world is flat when I say I don’t trust them

There's a quasi-religious aspect that's developed about the whole thing.

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.

My biggest issue with organ donation is that 'brain death' still isn't terribly well understood. There are sensors that can be used to determine blood flow, fine grained brain activity, etc, but they aren't universally widespread. Reading the accounts of patients with 'locked in' syndrome really spooked me. I wouldn't want to live like that, but I'd want to be anesthetized the same as any other surgery before organ donation.

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.

Brain death presents differently than locked-in syndrome. It’s diagnosed by weaning a patient off drugs that could impair breathing and then seeing if the patient breathes on their own. If they don’t breathe on their own, the assumption is that the brainstem is no longer functioning and that’s what’s meant by “brain death.”

My grandfather had a stroke which affected his ability to breathe on his own. He was placed on life support for a little while. I was told he finally indicated he did not wish to remain on it (somehow, I wasn't there), and he was disconnected and allowed to pass. My point isn't that he was 'brain dead', but that higher order cognitive function can remain even after someone loses the ability to breathe on their own. I'd have no desire to cling to life in his condition, but I'd want to avoid any possibility of being around for the final harvesting operation.

The test isn’t that someone can’t breathe effectively on their own, but that they don’t even try.

Please define what you mean by "real death" in terms of objective clinical criteria. Are there any recorded cases of a brain dead patient who later recovered consciousness?

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.

See but you've hit on exactly the problem, and the article mentions it. It is impossible to know when someone is really dead when some systems critical to life are still operational. Sure, there's a difference between a living person and a corpse, but there's not always a bright line that tells you when the change from one to the other happens.

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.

[0] https://www.medscape.com/viewarticle/902143