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Not sure why you're getting downvoted here—I disagree with you, but nothing you're saying is objectively unhelpful. > I find it very sad that the people that a

by rflrob 9y ago

Not sure why you're getting downvoted here—I disagree with you, but nothing you're saying is objectively unhelpful. > I find it very sad that the people that are making these critical decisions that could affect my life is some randomly appointed panel of "experts". Two things there—first, they aren't "experts", they're just experts. These are people who had access to the best literature on what is possible and were respected in the field for their opinions. This is evidenced by the fact that the report they issued was not forced upon anyone. The 27 states that issued new definitions of death were not under some external pressure to adopt those definitions. If there was some deep controversy about the report, then it doesn't have to lead to anything. These experts were empowered to do precisely one thing—issue their opinion. That so many states adopted their opinion suggests that it was pretty good. > Why should these people in particular have any say in the matter? Or have more say than I do about whether I live or die? If you are permanently comatose, then those experts, by virtue of having thought about the issues deeply and also having viable brain function should have more say than you do while you have no brain function. If you provide advanced directives about what should be done in case of catastrophic brain damage, then that should by all means be taken into account as well. > It's also sad how so much of the medical community tries to hand over the ethical decisions to others, and treats their words as inviolate truth instead of thinking for themselves. The medical community does this because they are in an emotionally compromised position. Because they have a relationship with the person their family, they might ignore what is medically possible or likely and attempt heroic measures that would lead to huge expenses and/or lead to an undesirable outcome. Asking dispassionate outsiders for their opinions should improve the overall outcomes. I also would

pmoriarty 9y ago
"Two things there--first, they aren't "experts", they're just experts. These are people who had access to the best literature on what is possible and were respected in the field for their opinions." What makes you think these people were respected in the field for their opinions? I see no evidence of that in the article. They're just described as "men who already knew one another: ten doctors, one lawyer, one historian, and one theologian." To me that doesn't make them any more an expert than anyone else. As for "access to the best literature on what is possible", who in this era of the internet doesn't have such access? Again, this is no indication that they're an expert. Then you say that the above qualifications are "evidenced by the fact that the report they issued was not forced upon anyone. The 27 states that issued new definitions of death were not under some external pressure to adopt those definitions. If there was some deep controversy about the report, then it doesn't have to lead to anything. These experts were empowered to do precisely one thing--issue their opinion. That so many states adopted their opinion suggests that it was pretty good." Legislators pass all sorts of stupid laws all the time, often without even reading them. I don't take the lack of "deep controversy about the report" (if there really was none) to be evidence of anything but just that. The reason for such a lack could be anything from lack of publicity to having hired a good PR agency, to having biased or ignorant legislators, etc. Anyway, there's a section of the article in which even one of the "experts" admitted that he was being disengenous: "The commission’s staff philosopher, Daniel Wikler, a professor at Harvard and the first staff ethicist for the World Health Organization, told me that he didn’t think the commission’s theory of death was supported by the scientific facts it cited. "I thought it was demonstrably untrue, but so what?" he said. "I didn’t see a downside at the time." Wikler told the commission that it would be more logical to say that death occurred when the cerebrum--the center for consciousness, thoughts, and feelings, the properties essential to having a personal identity--was destroyed. His formulation would have rendered a much broader population of patients, including those who could breathe on their own, dead. "Despite Wikler’s reservations, he drafted the third chapter of the report, "Understanding the ‘Meaning’ of Death." "I was put in a tight spot, and I fudged," he told me. "I knew that there was an air of bad faith about it. I made it seem like there are a lot of profound unknowns and went in the direction of fuzziness, so that no one could say, ‘Hey, your philosopher says this is nonsense.’ That’s what I thought, but you’d never know from what I wrote." You wrote: "The medical community does this because they are in an emotionally compromised position. Because they have a relationship with the person their family, they might ignore what is medically possible or likely and attempt heroic measures that would lead to huge expenses and/or lead to an undesirable outcome." Huge expenses? How much is a life worth? And if the person is already dead, in the eyes of the doctors, what "undesirable outcome" could their measures have?
- rocqua 9y ago
  Responding only to a small part, > And if the person is already dead, in the eyes of the doctors, what "undesirable outcome" could their measures have? Even if doctors believe someone to be dead, when family members disagree, doctors can reasonably extrapolate that those family members will be distressed when life support is stopped. Unless those doctors have no empathy at all, that would be an undesirable outcome for them. A slightly more cynical view would include doctors fearing media backlash and legal action.
  - AstralStorm 9y ago
    Media backslash and legal action is probably at some point cheaper than keeping a clinically dead person alive. Heck, even than cynical strong PR campaign to shut the controversy up. While nobody wants to do it, like layoffs, it sometimes has to be done...
janeroe 9y ago
> Two things there—first, they aren't "experts", they're just experts. These are people who had access to the best literature on what is possible and were respected Just 50 years ago or so "not 'experts' but experts" were practicing lobotomy as a great new cure that would save us all. They had access to the best literature, probably were respected. There was an article not so long ago here about a IIRC 12 y.o. boy who got lobotomized because his step mother decided that'd be a great idea. Rosemary Kennedy was lobotomized by the same doctor. American health care has always been great. > huge expenses Pretty much this.
- kelnos 9y ago
  > > huge expenses > Pretty much this. Maybe, but what's wrong with that? We don't have infinite resources. Let's assume for a second that we could keep this poor girl going for another few decades as she is now. Is it worth spending tens of millions of Medicaid dollars for that quality of life, when there are many other patients in need who could benefit much more from better care?
  - janeroe 9y ago
    > Is it worth spending tens of millions > We don't have infinite resources. You tell me why it costs tens of millions and yet the overall healthy girl after a minor procedure ended up in a condition like that. And why the butchers are still doing their butcher thing rather than being in prison for medical error and negligence?
dfee 9y ago
It reads better if you replace experts with “well trained technicians”. Having worked with hundreds of physicians, I’m confident in saying that expertise follows the power law in this field, too. Only 1-2% should rightfully be put on that pedestal our culture reserves for health workers, and the other.

by rflrob 9y ago

pmoriarty 9y ago

"Two things there--first, they aren't "experts", they're just experts. These are people who had access to the best literature on what is possible and were respected in the field for their opinions." What makes you think these people were respected in the field for their opinions? I see no evidence of that in the article. They're just described as "men who already knew one another: ten doctors, one lawyer, one historian, and one theologian." To me that doesn't make them any more an expert than anyone else. As for "access to the best literature on what is possible", who in this era of the internet doesn't have such access? Again, this is no indication that they're an expert. Then you say that the above qualifications are "evidenced by the fact that the report they issued was not forced upon anyone. The 27 states that issued new definitions of death were not under some external pressure to adopt those definitions. If there was some deep controversy about the report, then it doesn't have to lead to anything. These experts were empowered to do precisely one thing--issue their opinion. That so many states adopted their opinion suggests that it was pretty good." Legislators pass all sorts of stupid laws all the time, often without even reading them. I don't take the lack of "deep controversy about the report" (if there really was none) to be evidence of anything but just that. The reason for such a lack could be anything from lack of publicity to having hired a good PR agency, to having biased or ignorant legislators, etc. Anyway, there's a section of the article in which even one of the "experts" admitted that he was being disengenous: "The commission’s staff philosopher, Daniel Wikler, a professor at Harvard and the first staff ethicist for the World Health Organization, told me that he didn’t think the commission’s theory of death was supported by the scientific facts it cited. "I thought it was demonstrably untrue, but so what?" he said. "I didn’t see a downside at the time." Wikler told the commission that it would be more logical to say that death occurred when the cerebrum--the center for consciousness, thoughts, and feelings, the properties essential to having a personal identity--was destroyed. His formulation would have rendered a much broader population of patients, including those who could breathe on their own, dead. "Despite Wikler’s reservations, he drafted the third chapter of the report, "Understanding the ‘Meaning’ of Death." "I was put in a tight spot, and I fudged," he told me. "I knew that there was an air of bad faith about it. I made it seem like there are a lot of profound unknowns and went in the direction of fuzziness, so that no one could say, ‘Hey, your philosopher says this is nonsense.’ That’s what I thought, but you’d never know from what I wrote." You wrote: "The medical community does this because they are in an emotionally compromised position. Because they have a relationship with the person their family, they might ignore what is medically possible or likely and attempt heroic measures that would lead to huge expenses and/or lead to an undesirable outcome." Huge expenses? How much is a life worth? And if the person is already dead, in the eyes of the doctors, what "undesirable outcome" could their measures have?

rocqua 9y ago
Responding only to a small part, > And if the person is already dead, in the eyes of the doctors, what "undesirable outcome" could their measures have? Even if doctors believe someone to be dead, when family members disagree, doctors can reasonably extrapolate that those family members will be distressed when life support is stopped. Unless those doctors have no empathy at all, that would be an undesirable outcome for them. A slightly more cynical view would include doctors fearing media backlash and legal action.
- AstralStorm 9y ago
  Media backslash and legal action is probably at some point cheaper than keeping a clinically dead person alive. Heck, even than cynical strong PR campaign to shut the controversy up. While nobody wants to do it, like layoffs, it sometimes has to be done...

janeroe 9y ago

> Two things there—first, they aren't "experts", they're just experts. These are people who had access to the best literature on what is possible and were respected Just 50 years ago or so "not 'experts' but experts" were practicing lobotomy as a great new cure that would save us all. They had access to the best literature, probably were respected. There was an article not so long ago here about a IIRC 12 y.o. boy who got lobotomized because his step mother decided that'd be a great idea. Rosemary Kennedy was lobotomized by the same doctor. American health care has always been great. > huge expenses Pretty much this.

kelnos 9y ago
> > huge expenses > Pretty much this. Maybe, but what's wrong with that? We don't have infinite resources. Let's assume for a second that we could keep this poor girl going for another few decades as she is now. Is it worth spending tens of millions of Medicaid dollars for that quality of life, when there are many other patients in need who could benefit much more from better care?
- janeroe 9y ago
  > Is it worth spending tens of millions > We don't have infinite resources. You tell me why it costs tens of millions and yet the overall healthy girl after a minor procedure ended up in a condition like that. And why the butchers are still doing their butcher thing rather than being in prison for medical error and negligence?

dfee 9y ago

It reads better if you replace experts with “well trained technicians”. Having worked with hundreds of physicians, I’m confident in saying that expertise follows the power law in this field, too. Only 1-2% should rightfully be put on that pedestal our culture reserves for health workers, and the other.