I thought it was an interesting article - and there is nuance around determining what it means to die, the definition has changed over time and for anyone that has Alcor will hopefully keep changing.
That said, this paragraph about Shewmon caused me to basically dismiss his perspective about any of it:
> "When Shewmon was a college sophomore, at Harvard, he listened to Chopin’s Trois Nouvelles Études No. 2, in his dorm room, and the music lifted him into such a state of ecstasy that he had an epiphany: he no longer thought it possible that all conscious experience, particularly one’s perception of beauty, could be a “mere electrophysiological epiphenomenon,” he said. The music seemed to transcend “the spatial limitations of matter.” An atheist, he converted to Catholicism and studied Aristotelian-Thomistic philosophy. He went to medical school, in 1971, and then specialized in neurology, because he wanted to understand the relationship between the mind and the brain."
It seems the main tragedy here is that a family went in for a relatively routine (possibly inappropriate if the apnea was due to obesity) surgery and had their child die. That they don't trust the medical staff after that doesn't seem unreasonable to me, but it doesn't mean the medical staff is wrong.
The determination of death in this case seems less important than the determination of suffering or quality of life.
Alan Shewmon is a friend of mine and a highly respected neurosurgeon, ending a long career as the "chief of the neurology department at Olive View-U.C.L.A. Medical Center" (cf the article).
Disregarding his scientific opinion because he had a conversion experience in college is rather bigoted, don't you think?
Though when he's making statements about the mind and how it could define what 'death' means in a clinical sense, then nonsense like "The music seemed to transcend the spatial limitations of matter" which is contradicted by all existing evidence, reduces my respect for him on that topic and makes me nervous about his scientific/critical thinking in general.
If they can't get that right why would I think they have a good idea about something where there's less evidence that's even more controversial?
> he no longer thought it possible that all conscious experience, particularly one’s perception of beauty, could be a “mere electrophysiological epiphenomenon,”
Though for the music one the “transcend spatial limitations of matter” is the part I take issue with. It’s unclear what it even means, but seems to imply some supernatural specialness.
Ben Carson is a great surgeon. Doesn't make him qualified outside of his highly specialized area (as we've seen).
Same is true of Shewmon. It calls into question his evaluation of the subject when he's previously demonstrated questionable judgement in a similar - related - matter.
Not that it discredits the work itself mind you - if it's good, it's good - but right now the work seems mostly opinion based so calling into question is biases reaching conclusions on this subject is not only not bigoted and quite valid it is required to have an intellectual rigor.
Again, the work may stand by itself. That's not demonstrated yet however.
While I'm not religious, I don't understand what specifically in that paragraph warrants dismissing a person's perspective on the matter. Could you elaborate?
Well the rampant disregard for evidence instead favoring personal emotional experience is not exactly a good look if you want to be taken seriously scientifically.
You could point to all manner of quantum-woo that uses similar arguments (basically everything from the atrocious What The Bleep Do We Know "documentary" for example).
I understand, though I think you're throwing the baby out with the bathwater here, especially since unlike quantum-woo BS, the hard problem of consciousness or the essence of "matter" is nowhere near being solved, (and I would argue unsolvable using any scientific method), so I try to differentiate between people's subjective feeling about it vs their competence in the scientific realm.
With all due respect, I take the opinion of neuroscientists on the hard problem of consciousness as seriously as I'd take the opinion of a Zen master on issues in neuroscience.
The fact that neuroscientists might one day deliver an explanation of the soft problem of consciousness (i.e understanding exactly how the brain works and the exact correlation of every state and process to the corresponding subjective experience) will not bring any of us one iota closer to understanding the hard problem. In this case, the fact that one does not recognise there is such a problem implies ignorance more than anything else.
I'm not sure why you think this is a separate hard problem that can't be solved by understanding how things work.
History is filled with examples of problems thought to be unsolvable until they weren't. Many things were in a mysterious realm of non-explanation before being explained by science.
It could be that the current problem is poorly defined or the wrong questions are being asked, but nothing suggests it's an unsolvable problem 'using any scientific method'. You can also easily see the material nature of consciousness by looking out how physical things affect it (brain tumors, LSD, alzheimer's).
Particle physicists are also continuing to work on the building blocks of matter. You can use science to figure out the nature of reality in the state that it really is, not just how it appears to us in our mental models of it. The map is not the territory.
First, of all, it should not surprise you that there are limits to what can be achieved with reason or knowing how things work: Within the boundary of what can be thought about there are already problems that can be proven to be unsolvable, such as finding an algorithm that can tell whether a program will halt or not (undecidable problems), or finding a formal system of rules that is both complete and consistent (Gödel's incompleteness theorem).
Now regarding physics - you said it yourself: The map is not the territory. Physics is nothing more than an ever improving map. It will never be the territory. The mental models you speak of are exactly the ever changing map which attempts to fit reality (which is what exists prior to giving it a name) to concepts which make sense to us. It is crucial to understand that our concepts/thought about reality will only ever be a subset of reality. Equations are nothing more than a description - they are not the thing in itself. Consider the question Stephen Hawking phrased: "What is it that breathes fire into the equations and makes a universe for them to describe?"
The last thing is understanding the difference between the soft problem and the hard problem of consciousness. These two problems are not on the same level at all. The soft problem can be successfully used as the "God of the gaps" type argument and therefore I could in principle agree that it can be eventually be resolved (though I might argue regarding the time frame required to solve it). The soft problem is "simply" fully understanding the functionality of the brain, part of which includes an explanation of which physical processes in the brain are followed by which experiences. The hard problem asks a completely different question: how does a physical process give rise to a subjective experience? Saying that the subjective experience is just some illusion while the physical process is real is silly considering your only access to reality is via your subjective experience, followed by your theories on what that experience means (including the thought that there are such things as physical objects).
Now the reason the hard problem of consciousness appears solvable to many people comes from the mistaken view that consciousness is an emergent phenomena of physical processes, that the "subjective" is emergent from the "objective". These terms are of course necessary for science to exist, but as many wise people who have meditated long and hard on this matter have suggested, the nature of consciousness exists prior to concepts, prior to the division of reality by the mind into subjective and objective and therefore prior to (and so beyond the scope of) scientific inquiry.
The halting problem is a good example that I'd have to think more about. My initial feeling is that while the proof shows that you can't write an general algorithm to determine if a system halts you can still understand why that's the case from the proof itself. My claim isn't that understanding things allows you to do everything, but to find out what can be done. You're right though that knowing more won't let you violate the laws of physics or computability - it just lets you learn what the laws are.
For the physics point I think it's possible that the territory is math and that's why mathematical equations do such a good job of explaining it. I read about this idea in Max Tegmark's book: https://www.amazon.com/dp/B00DXKJ2DA/ - in that case we could be discovering pieces of it (though our syntax and such is still just a map to it). Until we have a grand unifying theory it seems worthwhile to keep working on the map. Maybe I'm just optimistic about this.
You lose me in the next section though - it seems like we agree on the soft problem, but I don't understand your classification of the hard problem.
Why is it difficult to think of a physical process leading to subjective experience? Natural selection towards a general problem solving organ that provides feedback etc. Visual inputs, audio, the ability to make predictions and act based on those - subjective experience seems like a natural outcome of all of that?
> "but as many wise people who have meditated long and hard on this matter have suggested, the nature of consciousness exists prior to concepts, prior to the division of reality by the mind into subjective and objective and therefore prior to (and so beyond the scope of) scientific inquiry."
I don't understand what leads to this conclusion - your last sentence seems to imply dualism which I think is generally pretty weak since poking someone in the brain, a brain tumor's affect on consciousness, and LSD's affect on it provide decent evidence that it's material. I don't think this is a real problem, it feels like one of those that disappears once we understand how things actually work.
Only noticed your reply now. Can continue discussion via email if you're interested, but will quickly refer to what you've mentioned:
I'm aware of Tegmark's view and was quite intrigued by it at the time, but I see it more as statement suggesting that mathematics can serve as the perfect map for physics to eventually uncover rather than that mathematics can be the territory itself (Max might disagree though). I don't think I can put it any better than the eloquent way Hawking stated it about what is it that breathes fire into the equations. Having a perfect description does not create a reality, and even if quantum mechanics, gravitation, dark matter, dark energy and whatever other mysteries that no doubt will surface in the future will be perfectly understood and unified under an elegant and perfect mathematical description, it still won't explain how existence exists (and I'm not referring to the big bang - I'm referring to the very current reality). Putting it simply, the "is-ness" of reality is not the same as the rules it adheres to, since rules don't create a reality. We attempt to understand reality by noticing consistencies in our interaction with it, and then somehow confuse these consistencies (which we label with certain concepts) with the reality that generates them - or worse yet, think that these consistencies that we notice create reality.
Glad we are in sync regarding the soft problem. In order to be in sync regarding the hard problem, we should agree on what it is. Basically to agree on what the hard problem of consciousness is, we must agree that a subjective experience of being conscious is a very real thing, but at the same time there is nothing physical about the experience - measurable physical things can be correlated to the experience or even cause it, but there is nothing measurable about the very real subjective experience. That's the problem in a nutshell.
By the way, if my explanation implied a belief in dualism then my explanation was obviously inadequate. However, my beef with dualism comes from a completely different angle than the scientific approach (or, more accurately, the approach of physicalism). The ironic thing is that physicalism, which is so opposed to dualism, is inherently dualistic by definition. Try and imagine what any physical object is other than being an interpretation of something from the point of view of a subject that experiences it. Science is so focused on the objects and the relations between them that it completely misses the fact that any conceptual explanation is only made possible by a very subjective explainer.
Not sure I managed to get the point across. There's an article that I liked which ties some of these ideas together in a nice way - perhaps it will do the subject more justice:
my favorite literature on the subject is Ernest Becker The Denial of Death. A great book. This article is (not that I ever had expectations from the newyorker.com but even for their low standards) total pish.
how do you provide evidence driven by personal disgust about writing style? Especially when that style of writing is only journalism which is the lowest form of writing.
Vox, Slate, Salon, New Yorker pretty much all the same, ... except a major difference (that makes it even more annoying). With the former I generally expect utter trash and am not surprised when it is trash, but the latter is trash dressed up in fancy pseudo-intellectualism.
Pretty sure he went through and downvoted all my recent comments. I'm guessing there's not much chance he's willing to suffer challenges to his viewpoint.
I have to wonder if our conception of death as a strictly one-way street is mistaken. When death meant cardiovascular death, this was reasonable — within minutes, the heart tissue itself dies from lack of oxygen perfusion, and thus this form of death is self-reinforcing.
For brain death, however, are we 100% certain that, given life support over a long enough period, the brain cannot heal from ischemic damage? At least enough to bring basic elements of consciousness back online? If so, it would be possible to be “dead”, and then subsequently “not dead”.
Is there any scientific understanding one way or the other on this?
(EDIT: I'm just reacting/responding to the last sentence of your post, btw. I'm generally pretty stoic about the process of life, so.)
I think the 'scientific understanding' would be that there's no such thing as 100% metaphysical certainty. However, that doesn't mean that all bets are suddenly off.
So, we should probably use statistical reasoning and evidence, science-based reasoning of the sort that tells us if there's at least a minimally plausible mechanism where X could possibly work. That sort of thing.
... and, if you're hungry enough for the answers to these -- and many considerably more niche questions -- become a scientist!
Somehow related to this, I came across today the very curious case (from 2007) of the normally functioning man who was discovered to be missing most of his brain.
"Beecher created a committee comprising men who already knew one another: ten doctors, one lawyer, one historian, and one theologian."
I find it very sad that the people that are making these critical decisions that could affect my life are some randomly appointed panel of "experts".
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?
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.
These are just my opinions, but you asked for them...
First, I'd recommend everyone (but especially people like doctors, who are in positions of trust and power) take philosophy and ethics courses so that they're better equipped to understand ethical arguments and make their own ethical decisions, without feeling that they must defer to the judgment of "experts".
Second, on the specific issue of when to end care, I think that living wills (when they exist) should be respected and otherwise the judgment of the family should be respected, though the necessary course of action becomes murkier when, for example, the family is estranged from the patient or can't be reached.
When other peoples’ money is at issue, as it almost always is, the wishes of the patient or family should be given no weight (unless they’re willing to pay).
That sounds callous, but it’s the humane thing to do. Money spent keeping someone alive who has no chance of recovery is money that’s stolen from the treatment of people who could benefit the most from it.
"Money spent keeping someone alive who has no chance of recovery is money that’s stolen from the treatment of people who could benefit the most from it."
There are people who everyone agree are alive (ie. no brain death, can communicate without problems etc) but who are suffering from a terminal illness and therefore have no hope of recovery. Should their medical care not be paid for by insurance? Would you characterize insurance money used for their care as "stolen"?
I think rayiner is talking about keeping braindead patients alive using life support.
Assuming that’s what he meant, your example of a terminally ill but otherwise conscious patient isn’t comparable. I’d also agree that it’s mostly pointless and wasteful to keep a braindead patient alive at the hospital’s expense.
If he thinks braindead patients without a chance for recovery should be treated differently than non-braindead patients without a chance for recovery, he should make the case for that.
I don’t really think that case needs to be made - you either agree with it axiomatically, or you don’t. My comment you just replied to nearly lays it out already.
A terminally ill patient cannot recover, but is functionally alive. A brain dead patient cannot recovery, and is not even functionally alive. I realize this comes across as harsh, but if you’re intubating a brain dead patient, you’re just circulating air through a warm corpse. One demonstrates obvious interiority, the other doesn’t exhibit anything except basic reactions that will permanently cease within minutes, if unaided.
If you want to reduce it to ethics, based on the definition of braindeath, one case involves the legitimate moral quandary of whether or not (and when) to allow a thing to die. The other case has no such moral quandary, because the thing is already (definitionally) dead.
Whether or not we like doing it, our medical system depends upon us making valuations about human life, even if only implicitly. If we allocate resources to keep a functionally dead object breathing the way a human being does, we’re taking away resources from a human being that is alive. It’s not rational if you accept the axiom that a braindead human is dead.
"The other case has no such moral quandary, because the thing is already (definitionally) dead. ... It’s not rational if you accept the axiom that a braindead human is dead."
This article and this case are getting attention precisely because people are disagreeing on the definition of death. If everyone accepted the definition of death axiomatically, there would be no controversy and nothing to argue about.
But people do disagree about it, so if you want to convince people you can't just appeal to axioms that there's disagreement about. You have to make a case.
And people can disagree with the case you have made or are unconvinced by your arguments. Additionally, they can be selfish.
What is your suggestion on how to reconcile that with any definition of death?
Taken to the extreme, this would mean that cryonics would have to be both refunded by state and by insurance companies since it can technically put off actual death (information theoretic) somewhat forever, much cheaper than critical care.
Though most families of people in PVS wouldn't want that.
The difference between terminally ill and 'brain death' people is interaction.
Terminally ill people can still act like a person. They can express their feelings to you, they can act on their feelings etc.
This contrasts with 'brain dead' people. Not only is their no hope for recovery, there is also no current interaction.
There are obvious questions raised in the above line of questioning about grey areas.
For example, people who are terminally ill and mute and bed-ridden. Or indeed the girl from the article who was 'brain dead' and yet seemed to have some way of expressing herself.
My point is that there is a basis for distinguishing between terminally ill and brain dead people. Though that raises hard questions regarding the gray area.
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
"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?
> 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.
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...
> 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.
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?
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?
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.
They weren't "random" they were experts. And their findings were never official policy which is part of the point of the story. They convened to update the medical understanding of death given new information and published their results. The official government definition came later and was less precise and has led to this current quandary.
It must be tremendously difficult for the parents. It's only natural that they would hold on to any chance of seeing their daughter again.
From the perspective of society, even assuming that someone declared brain-dead could be revived -- maybe with some future technology if they just keep the body functioning -- at what cost does it make sense to end the life?
Are there other cases where the unpleasant (edit: was "distasteful) subject of the cost of a life (as valued by society rather than Bill Gates) comes into play?
> Are there other cases where the distasteful subject of the cost of a life (as valued by society rather than Bill Gates) comes into play?
Each time there is a decision whether to spend some money or not to reduce risk to human life, it puts a monetary value on life.
These decisions can relate to how many doctors and nurses to employ, what and how much medical equipment to buy etc, but also more removed like investing into the reliability of infrastructure, the cost of education to become a doctor, deciding how much to value economic benefit vs. potential harm to humans through pollution, etc.
Each time you decide to spend the money, you put a lower boundary on the value of life. Each time you don't spend the money, you put an upper boundary on it.
Each time these boundaries become inconsistent, you could save more lives by spending money elsewhere.
I really wish society wouldn't treat the subject of the cost of life as distasteful -- more consistent decisions would arguably raise the quality of life.
I agree that this needs to be discussed more frankly. A better choice of words on my part would have been "unpleasant" rather than "distasteful".
In any case, I don't know of any modern political system in which this important issue can be addressed directly -- rather than letting each authority silently make decisions based on their own values.
It's also worth noting that the absolute value of people's lives (in terms of what's spent) changes depending on who's doing the spending. This is the same as saying "money is worth progressively less as you get more of it". That's unlikely to make the topic more approachable.
It is taboo to plainly talk about the value of human life, yet everybody is making such calculations every day, though almost entirely at the subconscious level.
Consider the following pairs of people. Imagine that you must choose death for one out of each pair.
A sick 90 year old man, a healthy 5 year old child.
A terminally ill mother, a middle aged man in jail for multiple violent felonies.
Your young child, a young child living in South Sudan.
A woman with a lifetime of schizophrenia, an undocumented worker who is trimming your trees.
Your spouse, your child.
These kinds of questions are uncomfortable to consider, and the answers are very personal.
I wonder: are the benefits of such conscious valuations greater than possible downsides?
Sure, we make those decisions every day. Everything we do has a risk to our lives and others, and we decide if it is "worth it" constantly. You can die playing baseball, skiing, jogging, etc. You can die from being vaccinated. Most deaths are caused by lifestyle choices.
Whenever some outfit says "safety is our top priority" that's marketing, not reality. A 100% safe automobile would never move an inch. You make a value judgement about life in the choice of car you drive, how you drive, where you drive, how often you drive, etc.
> No one was listening to us, and I can’t prove it, but I really feel in my heart: if Jahi was a little white girl, I feel we would have gotten a little more help and attention.
Their pain must be unbearable, I can't imagine. But we should not encourage or publish this kind of casual racism. If there is indeed a racial divide in deaths after tonsillectomy, then gather those statistics and publish them.
This isn't really an argument I want to wade into. But I just wanted to point out that there is a well-established racial divide in post-surgical mortality risk in the US, based on peer-reviewed studies [1] [2]. Hoping that may change your mind about the "casual racism" of the quoted comment, which looks perfectly reasonable to me.
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1448914/ ("Black patients have higher operative mortality risks across a wide range of surgical procedures, in large part because of higher mortality rates at the hospitals they attend.")
I have yet to find a study that accounts for confounding variables like hospital mortality rate, key biomarkers (blacks have a greater incidence of diabetes, for example), insurance status, financial standing, doctor ranking, educational level, patient compliance, etc., to arrive at a statistically significant conclusion there is a racial element in healthcare delivery outcomes. The examples you gave would feed into such a study, but are still not teasing out the complex socioeconomic factors that already plague blacks (which are another ball of wax to unwind for causes). Don’t have a dog in this fight either way; want to see more big data-driven analysis of policy questions now that it is more practical to do so.
The McMath family are (as far as I can see) not biostatisticians. The author's belief may or may not be accurate, but it is based on their experience in life. By your comment's reasoning, You are as "casually racist" as they are if you do not gather the statistics that you instruct the author to gather.
"Casual racism" is what the author perceives based on living their life and observing their surroundings; it is not their giving voice to their interpretation.
A couple jobs ago, my black coworker shared with me something along the lines of:
>Racism will make you crazy, man. (boss name) will walk into the room and shake everyone's hand, but not yours, and he's already walking out and so you're thinking "did he skip me on purpose cause he's racist? Maybe he just didn't see me cause I'm tucked back in here in the corner? Why am I tucked back here in the corner, anyway?" You're at starbucks and the barista shoots you a weird look - is it cause she hates black people? Maybe she just had some shit in her eye or maybe you're just imagining it.
He told me that while everyone knows racism is still alive, as a black man he's caught between detecting real racism and being an alarmist playing "the race card." It's an impossible fight, it "made him crazy."
I believe some women have similar feelings, but I have no way of knowing how true this is. It seems reasonable and semi-justified all things considered.
If the hospital staff are white and I conjecture that they rendered substandard service to a non-white patient because they're racist, I'm calling them racist due to their race. If you think that isn't racism, think again.
First of all, it isn't racism to believe that someone of another race would be treated better. Secondly, that family has no doubt dealt with a ton of racism in their lives, it certainly wouldn't be without precedent.
But she probably doesn't feel this way because of a history of patient care related discrimination. She feels like this because of pervasive racism at all levels of society, e.g. news coverage of kidnapped little white children vs minority children. Although in this case she may be wrong, I don't think we should sweep the far-reaching effects of endemic racism under the rug.
Racism involves believing that your race is superior to another race, which you believe to be inferior.
Expressing the belief that a person of another race would be treated better than you does not involve a belief in the inferiority of the other race or the superiority of your own, so is not racist.
It could be racist, for example if you believe you will get worse care because you believe the (some race) medical staff are inherently racist to your race.
If they expressed a belief that people of other races were inherently racist, then that would be a negative stereotype of that race and would be racist.
But no such belief was expressed in the article. They only said "No one was listening to us, and I can’t prove it, but I really feel in my heart: if Jahi was a little white girl, I feel we would have gotten a little more help and attention."
There's nothing in that statement expressing a view that the hospital staff was inherently racist because of the hospital staff's race.
It may not be racism, but it's still a largely-unsubstantiated accusation of racism designed to elicit support for their cause.
This story hits very close to home for me. I had my tonsils and adenoids removed 37 years ago at the same hospital in Oakland. Waking up from the surgery is still one of the most traumatic experiences of my life. I was strapped to my bed in the recovery room because they feared 3-year-old me would remove his IV. I tried to make a noise, but my throat was so swollen and in such pain that I couldn't vocalize. I lay there in agony for over 2 hours before a nurse realized I was awake. They sent me home a day later despite the fact that I couldn't swallow food beyond a couple of spoonfuls of ice cream. My mom had to take me back to the emergency room a week later to get an IV because I was basically starving.
All-in-all, I also feel I got substandard care there. And while 3-year-old me and the girl in the article likely shared some things in common--I'm guessing we both came from somewhat poor families with insufficient health coverage--race isn't one of those things.
So as a white person who went through a not-nearly-as-terrible-but-still-pretty-terrible version of what they went through, I think it's important that we acknowledge that the hospital may have had completely different reasons for supplying substandard care and that jumping straight to race as a root cause isn't constructive.
Usually either dumb reasons like "we thought so" - someone's incompetence that would be highly inconvenient to uncover, not to mention expensive in terms of lawsuits - or purely cost driven reasons.
I don’t know that “racism” is the right word to describe that, and in fairness you’re not going to capture its incidence in hospitals by gathering the mortality statistics for this particular surgery.
On the other hand, I do think that much of the racial tension described in this article can be more charitably attributed to, for lack of a better word, a bad hospital. The quality of care this family experienced is one of the reasons I (speaking as a white guy) won’t go to certain hospitals in my area unless it’s an emergency. In fact, most recently a relative of mine broke her femur and I was asking the EMTs if we could choose the hospital (we couldn’t, which is probably better for society, but unfortunate for my family).
On a broader note I dislike the New Yorker setting this article up to be about the medical concept of death in the headline, then making it a story of racial tension in medical treatment. The story explicitly mentions the races and professions of various people involved, even going so far as to refer to a sympathetic staff member as African American.
I was interested in reading a new perspective about brain death, but this just seems to be trying to develop a story.
I don’t know if it was so much of a race issue as a terrible hospital issue. My brother had lung surgery at a local hospital in NJ and when he needed it again we went to UPenn. UPenn laughed and said those local guys were medieval butchers. I don’t know much about Oakland hospitals but I can see this happening if they weren’t a great hospital.
This philosophy course on death by Shelly Kagan [1] - 26 lectures of 45 minutes - is one of the best courses on anything I have ever watched. It covers many aspects of death, from identity, minds and souls over eternal life to suicide, and I highly recommend it to anyone interested in the topic.
EDIT: To get a feeling for the course maybe watch lecture 14 first which is also quite close to the article. Not that the first lectures are not interesting, quite the opposite, but - at least if my memory serves me well - it takes quite a few lectures to establish and discuss fundamental concepts before the focus really shifts towards death. If you like that lecture, watch the entire course.
> I guess I feel that the medical profession is always going to be better off, in the long run, if we speak honestly and truthfully about what we know.
I couldn't agree more.
Although the case is different, I cannot help but remember Salvatore Crisafulli [1], which went into coma after an accident and entered Persistent Vegetative State (PVS). After two years he showed signs of conscience and was even able to begin communicate again using the movements of his own eyes. What is most striking is the fact that he was able to recall a number of events happened around him while he was in PVS (e.g., the nurses accidentally dropping him while moving his bed) [2]. This happened despite the fact that at the time a number of doctors kept repeating that he was completely unconscious.
The human body is so complex. We can try to gather some knowledge by means of experiments, models and statistical data, but we must realize that the scientific method is a human endeavour and is therefore imperfect by definition. Being a scientist (I study cosmology), I feel deeply embarrassed whenever I hear people professing their irreducible faith in «science».
> The human body is so complex. We can try to gather some knowledge by means of experiments, models and statistical data, but we must realize that the scientific method is a human endeavour and is therefore imperfect by definition. Being a scientist (I study cosmology), I feel deeply embarrassed whenever I hear people professing their irreducible faith in «science».
Hear, hear! And 'faith' in this case is indeed the right term... I have a similar reaction to those who are convinced there is a bright line between 'hard' and 'soft' sciences. Strictly speaking, you can never accumulate all the evidence.
> I feel deeply embarrassed whenever I hear people professing their irreducible faith in «science».
I have faith in the process of science in that I believe iterative addition to our knowledge based on evidence and ezperimentation is the best process we’ve found to adapt out understanding to changing circumstances and affect outcomes.
I don't think the parent is saying not to have faith in the scientific method, but that people should be aware of two things:
1) The scientific method will only validate (or fail to validate) predictions that you have made. If you haven't made a prediction about something, or fail to consider other effects, the scientific method often will not reveal those other things.
2) There are a lot of things we understand in many branches of science, but there's also a ton we don't understand. Death is one of many areas where we have a bunch of gaps, and many people don't realize that, or realize that some things that we take as established fact is more like established policy.
I agree: in fact, i earn my wages by applying this very method every day! But one must also be aware of the limits of this method. A few of the specialists consulted by Salvatore Crisafulli's family were too sure of their beliefs, up to the point of quickly dismissing any new evidence that might have turned their convinction.
Ignaz Semmelweis' sad story is very telling in this regard [1]; however, since i feel uneasy in talking of the scientific method applied to a discipline (medicine) that is alien to me, I'll present another case. In 1929, Edwin Hubble discovered what would have been called Hubble's law, which was the first strong evidence of the expansion of the universe predicted by Friedmann and Lemaitre [2]. The core of this law is a numerical factor, called "Hubble's constant", which quantifies how fast galaxies seem to recede as a function of their distance.
As year passed, several people improved the estimate of the Hubble constant, which moved from 600 km/s/mpc to the current estimate of 60-70 km/s/mpc. As plot [3] shows, the first estimates had confidence intervals (the error bars around each point) that were far too small: in fact, the best value found so far (70 km/s/mpc) is several sigmas out of the oldest one: therefore, Hubble's original confidence interval was blatantly wrong.
What happened is that Hubble relied on Cepheid stars to estimate distances, but he was unaware of the fact that there exist two groups of cepheids, with quite different characteristics.
When I used the expression "people with an irreducible faith in science", I meant that this sort of people would have dismissed any claim that the Hubble constant is far smaller than the estimate because they would have blindly stuck to the error bars found in Hubble's paper. Salvatore Crisafulli's and this girl's stories are in my opinion like the "true values" falling far out of the currently acknowledged "error bar".
I think that if the Oakland hospital was more kind to the mother, she would have accepted the death of her daughter. This would have allowed the mother to move on and not totally waste her life caring for - by all definitions - a dead teenage girl. I feel that the stories about her 'voluntary movements' are probably wishful thinking. And even so. What kind of quality of life does her daughter really have.
Not to mention: how will her other children fare under this whole ordeal. In some way her religious attitude has caused her to make a ton of bad decisions. And now to admit that her girl is actually dead is inconceivable. Because then she basically admits that the past years were for nothing. But the sad truth is that in reality, the mother lives in a fantasy world. Her girl is no more and for the sake of herself and her children, she should really move on and find a way - left or right - to come to terms with the fact that although her girl may seem to be alive, she isn't (anymore).
I feel terribly for the family and my condolences for their loss.
If a family wants to keep a brain-dead body alive, it should be their right. However the family is on Medicaid, and the article says the girl's body costs the state of NJ 150K per week for 24/7 nursing care. That's 8 million dollars a year the taxpayers are spending while this family lives in denial.
How many living kids could be helped with 8 million a year in Medicaid funding?
It's tragic to see a little girl die from a tonsil removal operation. And If the McMath family can arrange for private funding for this, then so be it, but millions of public tax dollars are sadly better spent on the living.
I am so so torn on this. It's hard to put a price tag on a human life. I imagine some people would even say that a life is literally priceless.
Given infinite resources, I would agree: if a life can be saved at any cost, then save it. But we don't have infinite resources. If the quality of other patient care was reduced because of attempts to keep this girl alive (if "alive" is indeed the right term), is that trade off worth it? I'm not sure. I mean, given the extraordinary results they've gotten so far, it's possible that, given more time (perhaps on the scale of decades), she'd get to a point where she'd be able to communicate more richly with people around her. Is it worth spending tens (hundreds?) of millions of (public!) dollars to get her there, especially if other people with better prognoses are getting worse care because of it? I'm not sure I can say yes to that. But I've also never been in a position where a loved one was in dire straits to the point where throwing heaps of money at the problem would help, so I don't know how that feels.
>“They are trying to feed us legal bull shit,” he wrote. “It’s not over until God say so.”
I reserved judgement on if this child is dead or not... But this makes absolutely no fucking sense for someone whose being kept alive on machines. If you remove the human element and unplug the machines, certainly, "God" will swiftly do his thing.
I had casual thoughts about death, never thinking about it particularly. I am an atheist so the whole afterlife thing was not there.
But of course I was not particularly comfortable with the thought.
I then had minor surgery which required full anesthetics.
I was looking at the anesthetist who said "ok, shall we start?" and I tried not to sleep. I blinked and opened my eyes in another room. I had a complete blackout, like if time did not happen during the surgery.
I thought "this is what death looks like". I am not afraid of death anymore. I will just close my eyes and this will be the end.
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[ 3.5 ms ] story [ 160 ms ] threadLove how casual racism is acceptable now.
That said, this paragraph about Shewmon caused me to basically dismiss his perspective about any of it:
> "When Shewmon was a college sophomore, at Harvard, he listened to Chopin’s Trois Nouvelles Études No. 2, in his dorm room, and the music lifted him into such a state of ecstasy that he had an epiphany: he no longer thought it possible that all conscious experience, particularly one’s perception of beauty, could be a “mere electrophysiological epiphenomenon,” he said. The music seemed to transcend “the spatial limitations of matter.” An atheist, he converted to Catholicism and studied Aristotelian-Thomistic philosophy. He went to medical school, in 1971, and then specialized in neurology, because he wanted to understand the relationship between the mind and the brain."
It seems the main tragedy here is that a family went in for a relatively routine (possibly inappropriate if the apnea was due to obesity) surgery and had their child die. That they don't trust the medical staff after that doesn't seem unreasonable to me, but it doesn't mean the medical staff is wrong.
The determination of death in this case seems less important than the determination of suffering or quality of life.
Disregarding his scientific opinion because he had a conversion experience in college is rather bigoted, don't you think?
Though when he's making statements about the mind and how it could define what 'death' means in a clinical sense, then nonsense like "The music seemed to transcend the spatial limitations of matter" which is contradicted by all existing evidence, reduces my respect for him on that topic and makes me nervous about his scientific/critical thinking in general.
If they can't get that right why would I think they have a good idea about something where there's less evidence that's even more controversial?
> he no longer thought it possible that all conscious experience, particularly one’s perception of beauty, could be a “mere electrophysiological epiphenomenon,”
https://lesswrong.com/lw/or/joy_in_the_merely_real/
Though for the music one the “transcend spatial limitations of matter” is the part I take issue with. It’s unclear what it even means, but seems to imply some supernatural specialness.
Same is true of Shewmon. It calls into question his evaluation of the subject when he's previously demonstrated questionable judgement in a similar - related - matter.
Not that it discredits the work itself mind you - if it's good, it's good - but right now the work seems mostly opinion based so calling into question is biases reaching conclusions on this subject is not only not bigoted and quite valid it is required to have an intellectual rigor.
Again, the work may stand by itself. That's not demonstrated yet however.
You could point to all manner of quantum-woo that uses similar arguments (basically everything from the atrocious What The Bleep Do We Know "documentary" for example).
Amongst neuroscientists it’s often called “the hard non-problem” for example.
The fact that neuroscientists might one day deliver an explanation of the soft problem of consciousness (i.e understanding exactly how the brain works and the exact correlation of every state and process to the corresponding subjective experience) will not bring any of us one iota closer to understanding the hard problem. In this case, the fact that one does not recognise there is such a problem implies ignorance more than anything else.
History is filled with examples of problems thought to be unsolvable until they weren't. Many things were in a mysterious realm of non-explanation before being explained by science.
It could be that the current problem is poorly defined or the wrong questions are being asked, but nothing suggests it's an unsolvable problem 'using any scientific method'. You can also easily see the material nature of consciousness by looking out how physical things affect it (brain tumors, LSD, alzheimer's).
Particle physicists are also continuing to work on the building blocks of matter. You can use science to figure out the nature of reality in the state that it really is, not just how it appears to us in our mental models of it. The map is not the territory.
First, of all, it should not surprise you that there are limits to what can be achieved with reason or knowing how things work: Within the boundary of what can be thought about there are already problems that can be proven to be unsolvable, such as finding an algorithm that can tell whether a program will halt or not (undecidable problems), or finding a formal system of rules that is both complete and consistent (Gödel's incompleteness theorem).
Now regarding physics - you said it yourself: The map is not the territory. Physics is nothing more than an ever improving map. It will never be the territory. The mental models you speak of are exactly the ever changing map which attempts to fit reality (which is what exists prior to giving it a name) to concepts which make sense to us. It is crucial to understand that our concepts/thought about reality will only ever be a subset of reality. Equations are nothing more than a description - they are not the thing in itself. Consider the question Stephen Hawking phrased: "What is it that breathes fire into the equations and makes a universe for them to describe?"
The last thing is understanding the difference between the soft problem and the hard problem of consciousness. These two problems are not on the same level at all. The soft problem can be successfully used as the "God of the gaps" type argument and therefore I could in principle agree that it can be eventually be resolved (though I might argue regarding the time frame required to solve it). The soft problem is "simply" fully understanding the functionality of the brain, part of which includes an explanation of which physical processes in the brain are followed by which experiences. The hard problem asks a completely different question: how does a physical process give rise to a subjective experience? Saying that the subjective experience is just some illusion while the physical process is real is silly considering your only access to reality is via your subjective experience, followed by your theories on what that experience means (including the thought that there are such things as physical objects).
Now the reason the hard problem of consciousness appears solvable to many people comes from the mistaken view that consciousness is an emergent phenomena of physical processes, that the "subjective" is emergent from the "objective". These terms are of course necessary for science to exist, but as many wise people who have meditated long and hard on this matter have suggested, the nature of consciousness exists prior to concepts, prior to the division of reality by the mind into subjective and objective and therefore prior to (and so beyond the scope of) scientific inquiry.
The halting problem is a good example that I'd have to think more about. My initial feeling is that while the proof shows that you can't write an general algorithm to determine if a system halts you can still understand why that's the case from the proof itself. My claim isn't that understanding things allows you to do everything, but to find out what can be done. You're right though that knowing more won't let you violate the laws of physics or computability - it just lets you learn what the laws are.
For the physics point I think it's possible that the territory is math and that's why mathematical equations do such a good job of explaining it. I read about this idea in Max Tegmark's book: https://www.amazon.com/dp/B00DXKJ2DA/ - in that case we could be discovering pieces of it (though our syntax and such is still just a map to it). Until we have a grand unifying theory it seems worthwhile to keep working on the map. Maybe I'm just optimistic about this.
You lose me in the next section though - it seems like we agree on the soft problem, but I don't understand your classification of the hard problem.
Why is it difficult to think of a physical process leading to subjective experience? Natural selection towards a general problem solving organ that provides feedback etc. Visual inputs, audio, the ability to make predictions and act based on those - subjective experience seems like a natural outcome of all of that?
I think you and I probably agree that 'emergent phenomena' is mostly hand-wavy nonsense (http://lesswrong.com/lw/iv/the_futility_of_emergence/).
> "but as many wise people who have meditated long and hard on this matter have suggested, the nature of consciousness exists prior to concepts, prior to the division of reality by the mind into subjective and objective and therefore prior to (and so beyond the scope of) scientific inquiry."
I don't understand what leads to this conclusion - your last sentence seems to imply dualism which I think is generally pretty weak since poking someone in the brain, a brain tumor's affect on consciousness, and LSD's affect on it provide decent evidence that it's material. I don't think this is a real problem, it feels like one of those that disappears once we understand how things actually work.
I'm aware of Tegmark's view and was quite intrigued by it at the time, but I see it more as statement suggesting that mathematics can serve as the perfect map for physics to eventually uncover rather than that mathematics can be the territory itself (Max might disagree though). I don't think I can put it any better than the eloquent way Hawking stated it about what is it that breathes fire into the equations. Having a perfect description does not create a reality, and even if quantum mechanics, gravitation, dark matter, dark energy and whatever other mysteries that no doubt will surface in the future will be perfectly understood and unified under an elegant and perfect mathematical description, it still won't explain how existence exists (and I'm not referring to the big bang - I'm referring to the very current reality). Putting it simply, the "is-ness" of reality is not the same as the rules it adheres to, since rules don't create a reality. We attempt to understand reality by noticing consistencies in our interaction with it, and then somehow confuse these consistencies (which we label with certain concepts) with the reality that generates them - or worse yet, think that these consistencies that we notice create reality.
Glad we are in sync regarding the soft problem. In order to be in sync regarding the hard problem, we should agree on what it is. Basically to agree on what the hard problem of consciousness is, we must agree that a subjective experience of being conscious is a very real thing, but at the same time there is nothing physical about the experience - measurable physical things can be correlated to the experience or even cause it, but there is nothing measurable about the very real subjective experience. That's the problem in a nutshell.
By the way, if my explanation implied a belief in dualism then my explanation was obviously inadequate. However, my beef with dualism comes from a completely different angle than the scientific approach (or, more accurately, the approach of physicalism). The ironic thing is that physicalism, which is so opposed to dualism, is inherently dualistic by definition. Try and imagine what any physical object is other than being an interpretation of something from the point of view of a subject that experiences it. Science is so focused on the objects and the relations between them that it completely misses the fact that any conceptual explanation is only made possible by a very subjective explainer.
Not sure I managed to get the point across. There's an article that I liked which ties some of these ideas together in a nice way - perhaps it will do the subject more justice:
http://nautil.us/issue/47/consciousness/is-matter-conscious
https://en.wikipedia.org/wiki/The_Denial_of_Death
Vox, Slate, Salon, New Yorker pretty much all the same, ... except a major difference (that makes it even more annoying). With the former I generally expect utter trash and am not surprised when it is trash, but the latter is trash dressed up in fancy pseudo-intellectualism.
reading Taleb's Black Swan might help also understand some peoples distaste for it: https://twitter.com/nntaleb/status/877259529196642306
I have to wonder if our conception of death as a strictly one-way street is mistaken. When death meant cardiovascular death, this was reasonable — within minutes, the heart tissue itself dies from lack of oxygen perfusion, and thus this form of death is self-reinforcing.
For brain death, however, are we 100% certain that, given life support over a long enough period, the brain cannot heal from ischemic damage? At least enough to bring basic elements of consciousness back online? If so, it would be possible to be “dead”, and then subsequently “not dead”.
Is there any scientific understanding one way or the other on this?
[0]: https://waitbutwhy.com/2016/03/cryonics.html
I think the 'scientific understanding' would be that there's no such thing as 100% metaphysical certainty. However, that doesn't mean that all bets are suddenly off.
So, we should probably use statistical reasoning and evidence, science-based reasoning of the sort that tells us if there's at least a minimally plausible mechanism where X could possibly work. That sort of thing.
... and, if you're hungry enough for the answers to these -- and many considerably more niche questions -- become a scientist!
https://www.newscientist.com/article/dn12301-man-with-tiny-b...
But this is a case where brain tissue is killed/removed over the course of decades, giving neuroplasticity time to work.
I find it very sad that the people that are making these critical decisions that could affect my life are some randomly appointed panel of "experts".
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?
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.
First, I'd recommend everyone (but especially people like doctors, who are in positions of trust and power) take philosophy and ethics courses so that they're better equipped to understand ethical arguments and make their own ethical decisions, without feeling that they must defer to the judgment of "experts".
Second, on the specific issue of when to end care, I think that living wills (when they exist) should be respected and otherwise the judgment of the family should be respected, though the necessary course of action becomes murkier when, for example, the family is estranged from the patient or can't be reached.
That sounds callous, but it’s the humane thing to do. Money spent keeping someone alive who has no chance of recovery is money that’s stolen from the treatment of people who could benefit the most from it.
There are people who everyone agree are alive (ie. no brain death, can communicate without problems etc) but who are suffering from a terminal illness and therefore have no hope of recovery. Should their medical care not be paid for by insurance? Would you characterize insurance money used for their care as "stolen"?
Assuming that’s what he meant, your example of a terminally ill but otherwise conscious patient isn’t comparable. I’d also agree that it’s mostly pointless and wasteful to keep a braindead patient alive at the hospital’s expense.
A terminally ill patient cannot recover, but is functionally alive. A brain dead patient cannot recovery, and is not even functionally alive. I realize this comes across as harsh, but if you’re intubating a brain dead patient, you’re just circulating air through a warm corpse. One demonstrates obvious interiority, the other doesn’t exhibit anything except basic reactions that will permanently cease within minutes, if unaided.
If you want to reduce it to ethics, based on the definition of braindeath, one case involves the legitimate moral quandary of whether or not (and when) to allow a thing to die. The other case has no such moral quandary, because the thing is already (definitionally) dead.
Whether or not we like doing it, our medical system depends upon us making valuations about human life, even if only implicitly. If we allocate resources to keep a functionally dead object breathing the way a human being does, we’re taking away resources from a human being that is alive. It’s not rational if you accept the axiom that a braindead human is dead.
This article and this case are getting attention precisely because people are disagreeing on the definition of death. If everyone accepted the definition of death axiomatically, there would be no controversy and nothing to argue about.
But people do disagree about it, so if you want to convince people you can't just appeal to axioms that there's disagreement about. You have to make a case.
What is your suggestion on how to reconcile that with any definition of death?
Taken to the extreme, this would mean that cryonics would have to be both refunded by state and by insurance companies since it can technically put off actual death (information theoretic) somewhat forever, much cheaper than critical care. Though most families of people in PVS wouldn't want that.
There are obvious questions raised in the above line of questioning about grey areas. For example, people who are terminally ill and mute and bed-ridden. Or indeed the girl from the article who was 'brain dead' and yet seemed to have some way of expressing herself.
My point is that there is a basis for distinguishing between terminally ill and brain dead people. Though that raises hard questions regarding the gray area.
> 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
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?
> 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.
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.
> 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?
> 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?
Only 1-2% should rightfully be put on that pedestal our culture reserves for health workers, and the other.
From the perspective of society, even assuming that someone declared brain-dead could be revived -- maybe with some future technology if they just keep the body functioning -- at what cost does it make sense to end the life?
Are there other cases where the unpleasant (edit: was "distasteful) subject of the cost of a life (as valued by society rather than Bill Gates) comes into play?
Each time there is a decision whether to spend some money or not to reduce risk to human life, it puts a monetary value on life.
These decisions can relate to how many doctors and nurses to employ, what and how much medical equipment to buy etc, but also more removed like investing into the reliability of infrastructure, the cost of education to become a doctor, deciding how much to value economic benefit vs. potential harm to humans through pollution, etc.
Each time you decide to spend the money, you put a lower boundary on the value of life. Each time you don't spend the money, you put an upper boundary on it.
Each time these boundaries become inconsistent, you could save more lives by spending money elsewhere.
I really wish society wouldn't treat the subject of the cost of life as distasteful -- more consistent decisions would arguably raise the quality of life.
http://faculty.haas.berkeley.edu/tetlock/Vita/Philip%20Tetlo...
In any case, I don't know of any modern political system in which this important issue can be addressed directly -- rather than letting each authority silently make decisions based on their own values.
It's also worth noting that the absolute value of people's lives (in terms of what's spent) changes depending on who's doing the spending. This is the same as saying "money is worth progressively less as you get more of it". That's unlikely to make the topic more approachable.
http://www.paulgraham.com/say.html
It is taboo to plainly talk about the value of human life, yet everybody is making such calculations every day, though almost entirely at the subconscious level.
Consider the following pairs of people. Imagine that you must choose death for one out of each pair.
A sick 90 year old man, a healthy 5 year old child.
A terminally ill mother, a middle aged man in jail for multiple violent felonies.
Your young child, a young child living in South Sudan.
A woman with a lifetime of schizophrenia, an undocumented worker who is trimming your trees.
Your spouse, your child.
These kinds of questions are uncomfortable to consider, and the answers are very personal.
I wonder: are the benefits of such conscious valuations greater than possible downsides?
Sure, we make those decisions every day. Everything we do has a risk to our lives and others, and we decide if it is "worth it" constantly. You can die playing baseball, skiing, jogging, etc. You can die from being vaccinated. Most deaths are caused by lifestyle choices.
Whenever some outfit says "safety is our top priority" that's marketing, not reality. A 100% safe automobile would never move an inch. You make a value judgement about life in the choice of car you drive, how you drive, where you drive, how often you drive, etc.
Their pain must be unbearable, I can't imagine. But we should not encourage or publish this kind of casual racism. If there is indeed a racial divide in deaths after tonsillectomy, then gather those statistics and publish them.
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1448914/ ("Black patients have higher operative mortality risks across a wide range of surgical procedures, in large part because of higher mortality rates at the hospitals they attend.")
[2] https://jamanetwork.com/journals/jamasurgery/fullarticle/401... ("Race and insurance status each independently predicts outcome disparities after trauma. African American, Hispanic, and uninsured patients have worse outcomes.")
"Casual racism" is what the author perceives based on living their life and observing their surroundings; it is not their giving voice to their interpretation.
>Racism will make you crazy, man. (boss name) will walk into the room and shake everyone's hand, but not yours, and he's already walking out and so you're thinking "did he skip me on purpose cause he's racist? Maybe he just didn't see me cause I'm tucked back in here in the corner? Why am I tucked back here in the corner, anyway?" You're at starbucks and the barista shoots you a weird look - is it cause she hates black people? Maybe she just had some shit in her eye or maybe you're just imagining it.
He told me that while everyone knows racism is still alive, as a black man he's caught between detecting real racism and being an alarmist playing "the race card." It's an impossible fight, it "made him crazy."
Expressing the belief that a person of another race would be treated better than you does not involve a belief in the inferiority of the other race or the superiority of your own, so is not racist.
But no such belief was expressed in the article. They only said "No one was listening to us, and I can’t prove it, but I really feel in my heart: if Jahi was a little white girl, I feel we would have gotten a little more help and attention."
There's nothing in that statement expressing a view that the hospital staff was inherently racist because of the hospital staff's race.
"White girl" seems to be a differentiating factor in their opinion, does whiteness not have anything to do with racism?
This story hits very close to home for me. I had my tonsils and adenoids removed 37 years ago at the same hospital in Oakland. Waking up from the surgery is still one of the most traumatic experiences of my life. I was strapped to my bed in the recovery room because they feared 3-year-old me would remove his IV. I tried to make a noise, but my throat was so swollen and in such pain that I couldn't vocalize. I lay there in agony for over 2 hours before a nurse realized I was awake. They sent me home a day later despite the fact that I couldn't swallow food beyond a couple of spoonfuls of ice cream. My mom had to take me back to the emergency room a week later to get an IV because I was basically starving.
All-in-all, I also feel I got substandard care there. And while 3-year-old me and the girl in the article likely shared some things in common--I'm guessing we both came from somewhat poor families with insufficient health coverage--race isn't one of those things.
So as a white person who went through a not-nearly-as-terrible-but-still-pretty-terrible version of what they went through, I think it's important that we acknowledge that the hospital may have had completely different reasons for supplying substandard care and that jumping straight to race as a root cause isn't constructive.
On the other hand, I do think that much of the racial tension described in this article can be more charitably attributed to, for lack of a better word, a bad hospital. The quality of care this family experienced is one of the reasons I (speaking as a white guy) won’t go to certain hospitals in my area unless it’s an emergency. In fact, most recently a relative of mine broke her femur and I was asking the EMTs if we could choose the hospital (we couldn’t, which is probably better for society, but unfortunate for my family).
On a broader note I dislike the New Yorker setting this article up to be about the medical concept of death in the headline, then making it a story of racial tension in medical treatment. The story explicitly mentions the races and professions of various people involved, even going so far as to refer to a sympathetic staff member as African American.
I was interested in reading a new perspective about brain death, but this just seems to be trying to develop a story.
EDIT: To get a feeling for the course maybe watch lecture 14 first which is also quite close to the article. Not that the first lectures are not interesting, quite the opposite, but - at least if my memory serves me well - it takes quite a few lectures to establish and discuss fundamental concepts before the focus really shifts towards death. If you like that lecture, watch the entire course.
[1] https://www.youtube.com/playlist?list=PLEA18FAF1AD9047B0
https://www.npr.org/sections/health-shots/2015/01/09/3760841...
I couldn't agree more.
Although the case is different, I cannot help but remember Salvatore Crisafulli [1], which went into coma after an accident and entered Persistent Vegetative State (PVS). After two years he showed signs of conscience and was even able to begin communicate again using the movements of his own eyes. What is most striking is the fact that he was able to recall a number of events happened around him while he was in PVS (e.g., the nurses accidentally dropping him while moving his bed) [2]. This happened despite the fact that at the time a number of doctors kept repeating that he was completely unconscious.
The human body is so complex. We can try to gather some knowledge by means of experiments, models and statistical data, but we must realize that the scientific method is a human endeavour and is therefore imperfect by definition. Being a scientist (I study cosmology), I feel deeply embarrassed whenever I hear people professing their irreducible faith in «science».
[1] https://it.m.wikipedia.org/wiki/Stato_vegetativo (Italian) [2] https://www.ibs.it/con-occhi-sbarrati-straordinaria-storia-l... (book in Italian)
Hear, hear! And 'faith' in this case is indeed the right term... I have a similar reaction to those who are convinced there is a bright line between 'hard' and 'soft' sciences. Strictly speaking, you can never accumulate all the evidence.
I have faith in the process of science in that I believe iterative addition to our knowledge based on evidence and ezperimentation is the best process we’ve found to adapt out understanding to changing circumstances and affect outcomes.
Why is that bad?
1) The scientific method will only validate (or fail to validate) predictions that you have made. If you haven't made a prediction about something, or fail to consider other effects, the scientific method often will not reveal those other things.
2) There are a lot of things we understand in many branches of science, but there's also a ton we don't understand. Death is one of many areas where we have a bunch of gaps, and many people don't realize that, or realize that some things that we take as established fact is more like established policy.
Ignaz Semmelweis' sad story is very telling in this regard [1]; however, since i feel uneasy in talking of the scientific method applied to a discipline (medicine) that is alien to me, I'll present another case. In 1929, Edwin Hubble discovered what would have been called Hubble's law, which was the first strong evidence of the expansion of the universe predicted by Friedmann and Lemaitre [2]. The core of this law is a numerical factor, called "Hubble's constant", which quantifies how fast galaxies seem to recede as a function of their distance.
As year passed, several people improved the estimate of the Hubble constant, which moved from 600 km/s/mpc to the current estimate of 60-70 km/s/mpc. As plot [3] shows, the first estimates had confidence intervals (the error bars around each point) that were far too small: in fact, the best value found so far (70 km/s/mpc) is several sigmas out of the oldest one: therefore, Hubble's original confidence interval was blatantly wrong.
What happened is that Hubble relied on Cepheid stars to estimate distances, but he was unaware of the fact that there exist two groups of cepheids, with quite different characteristics.
When I used the expression "people with an irreducible faith in science", I meant that this sort of people would have dismissed any claim that the Hubble constant is far smaller than the estimate because they would have blindly stuck to the error bars found in Hubble's paper. Salvatore Crisafulli's and this girl's stories are in my opinion like the "true values" falling far out of the currently acknowledged "error bar".
[1] https://en.m.wikipedia.org/wiki/Ignaz_Semmelweis [2] https://en.m.wikipedia.org/wiki/Friedmann%E2%80%93Lema%C3%AE... [3] https://www.cfa.harvard.edu/~dfabricant/huchra/hubble/h1920....
Not to mention: how will her other children fare under this whole ordeal. In some way her religious attitude has caused her to make a ton of bad decisions. And now to admit that her girl is actually dead is inconceivable. Because then she basically admits that the past years were for nothing. But the sad truth is that in reality, the mother lives in a fantasy world. Her girl is no more and for the sake of herself and her children, she should really move on and find a way - left or right - to come to terms with the fact that although her girl may seem to be alive, she isn't (anymore).
If a family wants to keep a brain-dead body alive, it should be their right. However the family is on Medicaid, and the article says the girl's body costs the state of NJ 150K per week for 24/7 nursing care. That's 8 million dollars a year the taxpayers are spending while this family lives in denial.
How many living kids could be helped with 8 million a year in Medicaid funding?
It's tragic to see a little girl die from a tonsil removal operation. And If the McMath family can arrange for private funding for this, then so be it, but millions of public tax dollars are sadly better spent on the living.
Given infinite resources, I would agree: if a life can be saved at any cost, then save it. But we don't have infinite resources. If the quality of other patient care was reduced because of attempts to keep this girl alive (if "alive" is indeed the right term), is that trade off worth it? I'm not sure. I mean, given the extraordinary results they've gotten so far, it's possible that, given more time (perhaps on the scale of decades), she'd get to a point where she'd be able to communicate more richly with people around her. Is it worth spending tens (hundreds?) of millions of (public!) dollars to get her there, especially if other people with better prognoses are getting worse care because of it? I'm not sure I can say yes to that. But I've also never been in a position where a loved one was in dire straits to the point where throwing heaps of money at the problem would help, so I don't know how that feels.
I reserved judgement on if this child is dead or not... But this makes absolutely no fucking sense for someone whose being kept alive on machines. If you remove the human element and unplug the machines, certainly, "God" will swiftly do his thing.
I then had minor surgery which required full anesthetics. I was looking at the anesthetist who said "ok, shall we start?" and I tried not to sleep. I blinked and opened my eyes in another room. I had a complete blackout, like if time did not happen during the surgery.
I thought "this is what death looks like". I am not afraid of death anymore. I will just close my eyes and this will be the end.