Monday, February 22, 2021

Bland stories that have horrific implications

 The BBC reports they are now doing non brain dead transplants. They pull the plug and wait for the person's heart to stop and then take the heart and other organs out... 

I support organ donation: it is life saving for many people. But to ignore that the need for organs is making elite ethicists to try to broaden the criteria of who is dead so they can get more organs is a dirty little secret.

This will not be the final step in broadening the way they "harvest" organs.

The "brain death" criteria in the UK is already broader than that used in the USA.

And if the "experts" are allowed to get their ideas into law, the criteria will be "cortical death" instead of whole brain death, meaning harvesting organs from those in "coma", or patients who are awake but in "persistant vegetative state" (which is frequently over diagnosed by "experts") will be considered "dead" so you can harvest their organs. So far, this has not been done legally in the USA... 

However, the BBC report about the increased use of "brain alive heart dead" criteria is just another way to muddy the discussion.

This is a very controversial practice, since for lay people, it confuses the difference between full brain death and what a lay person interprets as "Dead". There are already urban legends of people being declared brain dead and while arrangements were being done to remove their organs, the patients woke up... 

There are two reasons that these urban legends/fake news stories could be true: 

One: the diagnosis of brain death was not done properly

Two: The person had received sedation which confuses the diagnosis of brain death and then the sedation wears off.

But there is a need for organs, so what is a doctor to do?

But often you have someone who is profoundly brain damaged but does not meet the criteria for "brain death". So how can you harvest their organs?

You remove their machines and let the heart stop beating. Which is what the BBC article suggests they are doing.

Again often lay people get the impression that these people are brain dead (they are not). And again, there is that little problem of sedation, either by pain medicines, medicine given for seizures, etc. that can make a person look dead.

So there is confusion about what is going on.

As more cases of non brain dead people being taken off machines to get their organs, there will be more questioning of if doctors are killing people to get their organs. And this will have the unfortunate side effect of lowering the willingness of people to donate their organs when they die.

Twenty some years ago, when Dr Arthur Caplan, a famous bioethicist, moved to Pennsylvania where they had an option on the driver's license to check if they wanted their organs to be donated in case of death. When the clerk was instructing him how to fill out the forms for a drivers license, she warned him not to check this "or they will let you die".

I suspect the clerk was Afro American, since that community remembers the Tuskegee study and faces racism in hospitals and clinics, and of course, there is that matter of when a Pennsylvania governor needed a heart/liver transplant, he got it quickly... from a black donor who had died of a brain injury.

But most donors are not from the inner city minority community: in Western Pennsylvania, often brain damaged people from car wrecks (which were alas common on the winding dangerous back roads) were transferred to Pittsburgh, which is a big transplant center. The air ambulance guys would cynically call these transfers "body runs".

When I worked there, locals (mainly poor ethnic whites) still trusted the system, but this could change. And confusing brain death with stopping machines to kill the person so the donor's heart will stop so the docs can remove their organs is one way to increase the suspicion of the medical establishment, which is already losing it's trust due to the economic emphasis, with some of my relatives complaining that their doctor seems more interested in filling out the form on his computer than in actually listening to them.


In traditional brain death, if done properly, the entire brain and brain stem is dead, so the body is essentially brainless and will die the moment that you remove the machines. 

But if you stretch the criteria of whole brain death to "upper brain death", or worse, to people who are in a coma and will die when you take them off the machine, then you might be killing people who otherwise might survive... but with the pressure on the medical community to get organs for all those poor dying patients, you can see the problem of maybe being a bit lax in the diagnosis, or even helping the person along.

There was even a case where the patient didn't die fast enough for the doctor so he helped him along (but hey, the guy was mentally disabled to begin with so no the nice doc didn't get prosecuted).

and that is the dirty little secret that no one wants to discuss: If you are mentally handicapped, some people figure you are better off dead, and hey, if your death will help save another's life, why not?

(and this mind set isn't just seen in organ donation: There are too many disturbing stories of the mentally or physically handicapped who were denied full covid treatment because of their handicap, because hey, the hospital needed these resources for people who are not handicapped... except, as this NPR report reveals, there was no shortage of beds and equipment.)

The problem is even more complicated by the idea that all treatment, including food and water, should not be given to a person if they are "terminal" (where people often don't want to eat, just want to be pain free). 

In the UK, patients dying of painful diseases such as cancer were put on a "terminal sedation" aka Liverpool pathway that was originally devised to help control severe pain...except that this practice quickly started to be used for those who were not terminal, or in severe pain, just old and weak.

The UK has socialized medicine of course, so they have a "QALY" quality of life criteria that lets doctors decide if your quality of life is good enough for them to waste taxpayer's money by treating you... the organization that makes these decisions is called the N.I.C.E... an Orwellian name for a cold hearted bureaucracy.

Sarah Palin, whose son is both a minority (part Eskimo) and also has Down's syndrome, correctly labeled those using these criteria as a "death panel" and of course she was ridiculed. 

But the dirty little secret is that using "quality of life" criteria to decide if a person should get treated for an illness is a real danger, not just to the mentally and physically  handicapped, but the elderly, and minorities (including the poor whites and the AmerIndian communities, where I spent most of my time practicing medicine).

Minorities are also less likely to get transplants: We had an active "organ donor" drive at the local Indian festivals to encourage people to sign donor cards, because the need for transplants, especially kidney transplants because of genetic Kidney disease, auto immune renal failure and diabetes meant that kidney disease was a major problem for those of us working in the Indian Health Service.

But again, there is a need to trust the medical system.

and this is where the "slippery slope" to get sloppy in deciding who is not merely dead but really really dead comes in.

Brain death is accepted by most folks, but when the diagnosis is not done accurately, you confuse people.

You read of stories of prolonged life after "brain death"... this is especially true in children, whose brains are more able to regenerate. The Jahi McMath case is especially disturbing, not just because of her prolonged survival, (and possible regrowth of brain tissue that meant she no longer met the brain death criteria)...

but because her "death" was essentially due to a medical error, or rather a problem that happened that sometimes happens despite the best care, but could be considered malpractice in today's court system. A disabled child gets a much larger payment than a dead one, so the hospital involved had a monetary reason to declare her brain dead...

and the problem that Jahi's case revealed: That she actually had some brain recovery by the time she died of other complications.

So when you read the BBC article that they are making plans to use the "non brain dead" criteria for child donors, one does wonder how this can be done without people suspecting their donor child is not really dead, but you need her organs so you are lying.

And if you really want to be paranoid about doctors willing to kill children for organs: Well, here in the third world people actually sell organs to rich people. (Here it is illegal, but hey that never stopped anyone). And because it's common knowledge that people will buy organs, there is a persistent urban legend/ fake news story about gangs kidnapping street kids to remove their organs.


Trust is a delicate thing. The reason for the Hippocratic Oath was so people knew that their physician would not kill no matter what.

Since I graduated from medical school 50 years ago, much of that oath has been discarded by those who thought their newfangled ethics were wise than that old Greek guy. But I wonder...

Trust is a delicate thing, and when it's lost, it takes years to rebuild it.

And the BBC's happy story of saving lives by blurring the ethical line of who is dead and who is alive will have more negative influence on medicine in the future.

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