I don’t think it’s dishonest. Can you explain why you think it must be?
And I will add I think the word “dishonest” gets used a bit too much on HN in particular. It imputes intent when such is very difficult to guess reliably.
OP intentionally left out the context to discount this study and the team intentionally did not disclose exactly because of deniers like OP that will use the lung infection as a crutch for their main argument: any effort on vegetative state rehabilitation is bad.
The implantation of a vagal nerve stimulator is not a dangerous procedure. It is less invasive than for a pacemaker for example.
What most likely happened is that the patient recovered to the point where they were able to feed themselves, or at least to swallow food. They then inhaled some, which is a common occurrence in brain damaged patients, leading to the pneumonia and the subsequent death.
Even if the patient died, and even if only a subset of patients are eligible, this is still a major breakthrough.
Waking up after years in a vegetative state is extremely rare.
People with ischemic or traumatic brain injury severe enough to cause a coma, and who don’t die early, end up either in permanent vegetative state, or recover somehow.
People who recover must often deal with physical, cognitive and behavioral impairments that make them prone to complications such as infection, even when they wake up spontaneously.
Not excusing ethicality of the cover-up, but I would trade a vegetative eternity even for a day of consciousness. As a bonus point, you get to help advance the science.
>"a concern that people might have wrongly linked the therapy, which involved nerve stimulation, to the 35-year-old’s death from a lung infection."
The vagus nerve also innervates the lungs, and performing a surgery to stimulate it could impact the lungs or immune system in general... so there is definitely reason to suspect a link. I mean he was kept alive for 15 years apparently and then died relatively shortly after this procedure.
Just because there is no way to verify anything doesn't mean you can conclude "no link". If the doctors/researchers did actually make this claim (as opposed to the journalist), I would suspect this story about restored consciousness is more likely total BS than not.
EDIT:
There is a quote later on coming directly from the doctor, so looks like this study is probably BS.
I think you're wrong to link the implant to the lung infection on the basis that the vagus nerve "innervates the lungs" - which is a best an oversimplification. It's a very unlikely route for infection compared to standard hospital acquired or ventilator associated pneumonia.
I didn't "link" anything. I proposed a few possible links. And you don't think stimulating the vagus nerve could have some effect on the lung (eg secretions) which can result in infection?
I am going to have to agree with you and say that I too feel that it would be irresponsible for the study to conclude that there is "no" risk. I unsuccessfully tried to find out the side effects the clients experienced during this particular trial, but other patients who receive vagus nerve implants for conditions such as epilepsy or depression, they experienced many side effects such as coughing, breathing problems and difficulty swallowing. To me it seems that those three side effects alone could put a person in a coma at risk of aspiration and thus lung infection.
https://www.mayoclinic.org/tests-procedures/vagus-nerve-stim...
> We respected the family decision to not communicate about the event
You should know there's no "winning" when it comes to media. You'd have seen another article saying "Doctors don't obey family's wishes, broadcast death of patient".
But I can understand why the doctors wouldn't want to share this with the world. The general audience is 99.9% made up of title readers and googlers. And since public opinion matters in such cases they were all but guaranteed to blow the research.
And speaking of googlers, a word of advice for anybody who's not a doctor: finding "links" using Google and a handful of vague details in an article is a useless endeavor. You'll only conclude what you'd want/like the cause to be and even if you somehow get it right it will still be for the wrong reasons.
P.S. > there is "no" risk
I understood it as "there is no link between the study and the death". And one easy way to conclude this is to positively link the death to something else.
You've missed the entire point. This isn't about revealing that he died now. Its about them confidently proclaiming the death was unrelated to the procedure. There is no way this is justified if he died of "lung infection".
Even if it was that the family was horrified by the partial consciousness and asked for euthanasia, it is still linked to the procedure.
Treatment: from the perspective of the care provider the goal of treatment is to earn money by selling treatment in compliance with the relevant laws (just like anyone doing any job has the goal of earning money too)
Experimental treatment: the goal is to use the scientific principle to learn about and unbiasedly report the positive and negative potential effects of the experimental treament under study, in exchange for subsidies or research capital etc... where the subsidy is typically conditioned on actual research adherent to the scientific principles.
About consent for treatment: before selling a treatment informed consent must be acquired (depending on the laws, if not from the patient then from close relatives or assigned caretakers, ...)
About consent for experimental treatment: not only is informed consent necessary for the actual treatment, but also informed consent for reporting in an unbiased fashion on any potential effects and complications of the treatment. If such the relatives do not sign a contract consenting to publishing about any negative complications, then the patient under question does not qualify for experimental treatment! Go find another patient, whose relatives do sign in advance a contract illustrating informed consent to not just the treatment but also the publication of any complications!
So when you quote:
>> We respected the family decision to not communicate about the event
and then write:
>You should know there's no "winning" when it comes to media.
Then I don't see the relevance of "winning in the media" to scientific research. As a researcher you should merely simultaneously abide by the current laws on one hand, and abide by your own morals on the other, if any prevent you from performing an experiment you should simply refuse to participate.
> You'd have seen another article saying "Doctors don't obey family's wishes, broadcast death of patient".
That is impossible if the doctors had properly acquired in advance the informed consent for "experimental treatment" (including the consent for publishing complications). So someone somewhere did fuck up protocol to safeguard the scientific principles in this hypothetical case!
I don't know if they did or did not in advance acquire informed consent for publishing any potential complications but there are 3 options here:
1) They did acquired this consent, but actively suppressed the death from the report, and upon being called out they doctored a justification based on consent of the relatives.
2) They did not acquire this consent: they fucked up, and couldnn't publish as they claimed, but did not willingly suppress the information. After being called out on the suppressed death they claim their hands were tied (this is what is being circulated, the "gagged researcher" trope).
3) They did not acquire this consent AND they willingly suppressed the information. After being called on on the suppressed information, they correctly pointed out that they did not technically possess consent to publish about complications or death. This is like perpetrator justifying why he lied during interrogation, because he didn't have the deceased victim's consent to talk about the true circumstances of her death. This strategy is ultimately more and more incriminating, and harder and harder to climb out of the web of lies. You would expect most people to have learned this basic life lesson as a child at school...
>But I can understand why the doctors wouldn't want to share this with the world. The general audience is 99.9% made up of title readers and googlers. And since public opinion matters in such cases they were all but guaranteed to blow the research.
I call BS on this: you can find an endless amount of scientific articles in medicine openly describing death rates, the influence of doing or not doing something by randomly sorting people into control and hypothesis groups etc. Of these articles 99.9% do not generate controversy, even though anyone can read this article, decide to identify with a patient from group X and see that your outcome is inferior to those who were grouped in Y... Most people are too busy with cat memes to read the boring articles with greek or latinized terminology etc. The controversy was mostly by people who understand both the scientific principles, and the principles of informed consent and privacy...
>And speaking of googlers, a word of advice for anybody who's not a doctor: finding "links" using Google and a handful of vague details in an article is a useless endeavor. You'll only conclude what you'd want/like the cause to be and even if you somehow get it right it will still be for the wrong reasons.
Here I partially agree. It all depends on how acquainted the reader is with the scientific principles, with statistics, ... Doctors are valuable, their consideration time is valuable and scarce. In a libertarian economy the system is ideally geared for the best consideration per dollar (irrespective if the money comes from the patient or subsidized by government) by 1) optimizing the quality of consideration per unit of doctor time through education 2) optimizing doctor time per dollar by competition (supply and demand). So when you have a problem and visit a doctor that doctor does not have infinite time for you. Depending on your life and skills, you may be able to surpass the quality of hasty 20 minutes of consideration by investigating on your own. The bulk of the population is currently incapable of doing so, I certainly agree, and I think it would still apply to programmers, where statistics and the scientific principles aren't as emphasized as in the exact sciences. But people with a background in exact sciences are used to the scientific principle, and know how to search, find and navigate a new domain of knowledge. They know not to blindly assume they understand a new concept from context (as people do when learning a new language), but actually look up each new concept they encounter.
>P.S. > there is "no" risk
>I understood it as "there is no link between the study and the death". And one easy way to conclude this is to positively link the death to something else.
There is NO easy way to conclude !(A => C). You claim that finding any B => C implies !(A => C), but that does not follow, for example perhaps A => B => C, and A still causes C if indirectly so.
If a car driver hits a bicycle (A), and the driver of the bicycle falls (B) and breaks his neck (C), then identifying that falling from the bicycle (B) caused the breaking of the neck (C) does not mean the car driver hitting the bicycle did not cause the accident.
No matter which sample size you consider necessary for which level of suspected causation, this threshold should be independent of the positivity or negativity of the effect if you wish to be considered unbiased. If you consider sample size N=1 sufficient to consider the potential positive effect of kickstarting consciousness as causally resulting from the intervention, then sample size N=1 should be equally sufficient to consider the potential negative effects (such as death) as causally resulting from the intervention. If they didn't want "unfair bad publicity" due to stochastic nature of N=1, then they should have designed the experiment to have a higher N... otherwise it's just cherrypicking...
You suggested that the doctors were wrong to dismiss a causal relationship - I'll call that "link" and you can call or whatever you like. Don't weasel.
Could the implant have had an impact on the infection? Yes, sure. In medicine the answer to "is it possible… ?" is always "yes". But is it likely to be a significant factor, I'd say not.
>"You suggested that the doctors were wrong to dismiss a causal relationship - I'll call that "link" and you can call or whatever you like. Don't weasel."
Where did I weasel? I said you can't disprove a link based on that information. They concluded no link...
>'Could the implant have had an impact on the infection? Yes, sure."In medicine the answer to "is it possible… ?" is always "yes".'
Yes, exactly my point.
>"But is it likely to be a significant factor, I'd say not."
This is a totally different thing than concluding "no link", as did the original doctors.
But why not? They guy was kept alive for 15 years, they started doing this new procedure, and he was dead within a few months. Also, its reported elsewhere that vagus nerve activity, the mechanism by which this procedure is supposed to work, affects lung infection rates...
Of course there's always a reason to "suspect" a link. But what if this is later dismissed by the (potentially biased) doctors? If they linked the death to something else then the link to the study is strenuous at best. Do you have another reason to "suspect" other than "the doctors must be lying"? Or "it can't be a coincidence"? I'm not saying you're wrong, I'm saying your suspicions are based on sketchy details from an article. Pizzagate guy also saw a link after a cursory interwebs investigation. He was a smart one...
> There is a quote later on coming directly from the doctor, so looks like this study is probably BS
Mind giving that quote? And is it the same "I'm suspecting a link but I'm not linking" reasoning applied when you drew the "BS" conclusion? Give a man internet and he'll become an oracle.
1) There is no way to conclude there is no link from one guy. There are so many possible ways it could be linked. So anyone concluding no link cannot be trusted either due to maliciousness or ignorance.
2) He was apparently stable for 15 years until they started this vagal nerve stimulation, then was dead within months.
3) They don't mention anywhere how they ruled out any of these possible links.
Even only #1 is enough for me to not trust them. Note that my conclusion is not about any "link", my conclusion is that these are people who draw unwarranted conclusions for whatever reason.
>"Pizzagate guy also saw a link after a cursory interwebs investigation. He was a smart one..."
There seems to be a problem in this thread of people (not just you) confusing lack of evidence with disproving a link, or even proving a link. I am saying there is just "lack of evidence" as to what happened. Maybe it was fully or partially due to the procedure, maybe not.
> "Mind giving that quote?"
It was in the same article under discussion:
'Of the decision not to report the death, Sirigu told the Guardian: “The patient’s death was not linked to our protocol. He entered in our study in January 2016 and his participation ended [at the] beginning of September 2016. We respected the family decision to not communicate about the event. What was important for us was to keep the event in the privacy of this wonderful family.”'
Amazingly, ambien has had a similar effect for a small group of patients, returning them to consciousness for hours at a time after months or years of coma
Yup, basically the movie plot of Awakenings. Also, a family member of mine, whom was not catatonic, tried it for post-stroke fatigue/pain/neuropathy/brain fog to get away from gabapentin&pregabalin.
L-dopa, yup. I don’t think GP meant actually ambien.
Also GP if you check this - what are the downsides of gabapentin your relative was trying to get away from? I thought that was a fairly benign drug, even for long-term use.
I knew someone who took it for a while, and drowsiness, memory issues, balance issues, and depression were all pretty bad alone, much less combined. And getting off of it has to be gradual due to rebound pain.
The neuroimaging work is interesting from a research point of view, but what ultimately matters in a study like this are the clinical results. These were promising, but I think the headlines are over-optimistic. This is very much a preliminary study and the results seem mixed to me.
Yea, after learning that the patient died a few months later from a lung infection (after being kept alive for 15 years) yet the doctors/researchers claim there is "no link", it makes this whole story sound like BS. I could see "a link is unknown", or something like that but concluding "no link" from that info is impossible and even unreasonable.
I'll even allow that by stimulating the vagus nerve he had more unconscious movements than before and they misinterpreted it as responding to the environment, so its not totally malicious. But that team has given a very strong reason not to trust anything they say.
This serves as a reminder that I need to make sure my wishes are well documented and understood by my family that under no circumstances should they keep my body alive for 15 years in similar circumstances. And especially don't try to give me a tiny bit more consciousness, so that I may suffer.
If I had a choice between suffering and dying... I'd pick whichever had a greater chance of letting me achieve any of my goals. Maybe seeing my family one more time would be a worthy goal, or maybe sparing them some suffering would be a better one, but I'd rather make that choice myself.
Great. Please document how you'd like your family to think about it. Patients who aren't clear on what they care about make it harder on their physicians and much more importantly on their families. 'I think he would have wanted...' vs 'He says he wanted X, right here in this document.' Most physicians will bend over backwards to try to make it happen if its a realistic goal.
The thing is, I don't care what will happen when I can't think for myself anymore. If my family, or whoever, wants to think about what I would have wanted... that's not my problem anymore, I'll be out, and as far as I'm concerned they can do whatever they want.
That's why I'd rather not document anything: if I can make the decision, I don't want anyone or anything to make that decision for me, and if I can't, then I don't care.
This is 100% true in an absolute sense. You either choose life or death.
However, it misses a huge amount of nuance. Some of the nuanced questions include:
what qualifies as alive?
- brain dead?
- blood pressure only being maintained with medications?
- requiring permanent ventilator to breath?
- 'locked in' syndrome where you have literally no way of communicating with the world?
- combinations of the above?
what quality of life would you accept?
does how you die matter?
It's not as easy as deciding to just 'choose death'. Sure, most everyone would choose to live in a healthy body without pain, but that really isn't a realistic choice for most patients who are making that choice at that point in their lives.
Either way, whatever you choose, you should document what you prefer to make things easier on your loved ones.
Sure but they should be well aware of their choice. If they are paralyzed in your body unable to move and respond in any manner for 15 years, are they okay with that?
Because it was repeatedly and conclusively shown at that point that her brain had atrophied to half its size. She was gone. The reason the situation almost devolved into an armed stand-off between the courts and the executive branch is because every judge (Florida and Federal) who looked at the case--that is, those officials presented with all the evidence from both sides--quickly understood the reality; whereas the politicians hundreds and thousands of miles away who hadn't the first clue about the facts had other objectives in mind.
The subsequent autopsy confirmed what was already known. But there was never any accountability because by then the media had moved on.
Terry Schiavo is not the case to point to when questioning the science and treatment of PVS.
It was a fight between scientists and non-scientists. The scientists saw the scans of her head that showed a void where there should have been brain. The non-scientists looked at a handful of home movies where here random movements and facial expressions occasionally lined up to make her look aware. Such debate between scientific evaluation and layperson "gut feelings" predate so many of today's debates re climate.
It was also a generational fight. Her husband, the normal go-to for medical decisions was on one side, and her parents on the other. The parents wanted control over their daughter. They could not accept the widespread default that, for most all medical/legal matters, spouses trump parents. And this was Florida. So the "rights" of the older generation were given greater play in the courts than would have happened in other states.
>"The scientists saw the scans of her head that showed a void where there should have been brain."
People with "no" (very small) brains due to hydrocephalus have been discovered who are successful mathematics students and public servants. So, not sure the scientists are right here. As long as the brain is shrinking slow enough it may not be a huge deal in terms of mental ability.
Nope. She had a medical problem related to medication. Her brain went from normal to tiny in the course of perhaps 24 hours. This was not just a small brain, this was a normal brain in which huge areas died away due to lack of oxygen.
She suffered cardiac arrest from low serum potassium levels (hypokalemia) and she suffered massive brain damage as a result of the lack of oxygen to the brain. It was definitely a sudden, abnormal, and catastrophic change in brain size.
Years ago I ran across those extreme bilateral hydrocephalus cases you linked. As a neuroscientist, naturally they piqued my interest. I was skeptical then, and even moreso now. To my knowledge, in the years since those 2-3 cases popped-up, there has never been any follow-up on those original patients, and no similar bilateral cases have been found in the modern-era of brain imaging.
I will happily stand corrected if someone can provide any evidence from the last 10 years where any case like this has been documented and independently confirmed. Until then, I will continue to consider the brain important.
could you elaborate? Do you think they really didn't have the condition described? If they did then while more evidence would be helpful in establishing likelihood, it would not make a difference in establishing possibility.
I think it's possible that Lorber is misreading and misrepresenting the CT scan, and the actual state of the cortex is very different than what we are being shown.
These cases are extremely interesting, and any high-impact journal would immediately accept a quantitative MRI report or the simplest fMRI study on such a patient (if it were from a reputable source).
This would make the cover of Nature or Science mags, and would capture the attention of the entire neuroscience community. Yet as interesting as they are, none of these existing case studies conform to the standards of modern neuroscience reporting.
What happens when life support is discontinued for someone who has a normal sized brain? Are steps taken to make the end quick, or do they also starve? If the latter, then I'm not sure that it being provably not potentially horrible for Schiavo has any relevance to the underlying ethical question.
Quick Googling suggests that it's widely understood that starvation isn't, per se, painful. Presumably what might be painful is prolonged malnutrition.
As someone who has fasted for a week, I can attest that much of the physical discomfort disappears rather quickly. Though, I can't speak directly to near-death starvation, nor to dehydration.
I agree that it's ridiculous that doctors (in the U.S., at least) rarely have a way to quickly and legally dispatch people (or the shells of people). It happens informally, though. Being such a high-profile case, advocates for Terry Schiavo's parents all but ensured the doctors would follow the book--starvation.
>As someone who has fasted for a week, I can attest that much of the physical discomfort disappears rather quickly. Though, I can't speak directly to near-death starvation, nor to dehydration.
There are quite alot of reports from prisoners on hunger strikes, some of whom died. The ones I read about agreed with you. The discomfort disappears after the first week of so, after that you just get weaker and weaker to the point were you are no longer able to eat normal food.
Dehydration is much more problematic with slipping into a delirium and going into spasm. Sadly there are also examples of prisoners experiencing this, as some countries have had the concept of "dry cells". They were first used as punishment and later to break hunger strikers. Baader of the German Baader-Meinhof group for example retained kidney damage from his stay in such a cell during a hunger strike.
False equivalence. This is like showing a story about an arm amputee living a normal life, and using that to claim that someone who had just had their arm blown off would "be fine".
It doesn’t matter. Starving a bedridden patient to death is a passive activity, and is hence defined as “moral.” In contrast, giving them a morphine overdose so they die quickly and painlessly is an active measure and thus defined as “immoral.”
I'm not taking a position on this or trying to argue. I'm truly somewhat confused by it all. I'm not sure I agree with this, as I find it, honestly, rather frightening in practice, but it seems like painkiller administration is a kind of euthanasia loophole, even in places where euthanasia is not legal:
Passive euthanasia is the withholding of treatments necessary for the continuance of life. Whether the administration of increasingly necessary, albeit toxic doses of opioid analgesia is regarded as active or passive euthanasia is a matter of moral interpretation, but in order to pacify doctors’ consciences, it is usually regarded as a passive measure. Many people, therefore, regard it as an acceptable facet of good professional practice.
If patient is in pain (and we know because they tell us or because we think they look like they are in pain), we treat the pain. If treating that pain results in them having a shorter life, that's acceptable morally and legally. And I do not consider this active or passive euthanasia since there is a legitimate medical purpose for that medication.
If we gave someone an overdose for the purpose of ending their life, that is active euthanasia in the United States (I am unclear if it is different elsewhere and I agree it isn't so clear at the end of that abstract from a British author.)
> it seems like painkiller administration is a kind of euthanasia
It absolutely is. A relative of mine had a stroke and was on the way out. The nursing home staff told us they couldn't give him anything to help hasten the end but if you think he's in pain...? [expectant stare]
It took a few rounds of this before we twigged and completed the ritual. "Yes, I think he's in pain."
As caregiver for my grandfather, who had end-stage dementia and then pancreatic cancer, I can say this is true. In home hospice care basically instructed us to OD him on morphine to end his suffering.
I have heard of that sort of thing as well. It seems to be a sort of a wink and a nudge situation, where you up their painkiller dose and say, gee, that’s a lot of drugs, I sure hope it doesn’t have any bad effect on them, wink wink nudge nudge! And then: oh no, they died, how completely unforeseen!
The facade of what I said is maintained, but the reality is more complex, as usual.
This strange denial means things can get difficult in unusual circumstances, such as when your patient is making the national news. It’s hard to wink and nudge when not everyone is playing along.
Euthanasia is illegal in the US. The only thing you can do is remove artificial means of life support. It’s in humane. People should be able to die with dignity. We treat our pets better.
TL;DR: Assisted suicide approved and performed for woman suffering from depression and psychosis.
Actually, it wasn't the first non-terminal assisted suicide. I remember a 2009 story involving a man who decided to die with his wife. The wife had terminal cancer, he was healthy, albeit 80 years old. https://www.theguardian.com/society/2009/jul/14/assisted-sui...
That article also discusses another couple suffering from non-terminal but chronic illness and chronic pain. I don't remember reading about that couple at the time.
Yes. I don't mean to be critical of those decisions. But assisted suicide is often pitched to the public as a compassionate treatment to terminal illness. Being narrowly circumscribed is supposed to minimize the potential for abuse and coercion. So when I say those stories add complexity, I mean to say they create fodder for those opposing assisted suicide.
Not really, you just have to write the law to allow what you think should be allowed.
Some countries allow assisted suicide in non critical conditions, some allow it only for critical conditions, and some never allow it.
I don't see why it would give any weight to those opposing assisted suicide.
And TBH I don't understand what is the problem with assisted suicide for non critical conditions in the first place. People get to chose their life, and should be able to end it if they want to. The only alternative as I see it would be to put on the state the responsibility to make everyone so happy they would never want to die, which does not sound like something those opposing assisted suicide would want either.
Why would we force people to live miserable lives?
Please at least try to see the other side of the argument. Or we could replace a large chunk of depression treatment with firing squads and it would be fine your argument above.
As someone who suffers from depression for almost 20 years I would like to provide some thought:
Sometimes if you really just want to die and can not move out of bed, it would be REALLY(!) helpful if you would just be allowed to. If I could just go to my parents or my friends and say "hey, I love you all, but I have enough, I want to die" and if then nobody would be like "oh! you feel that bad? how can we help you? We are there for you" but just accept what I just said "I want to die", make an appointment at a doctor's office, give me some overdose and let me like. Act the same way as if I told them I want to move to another country, talk about it if you need, accept it and accept it as a life choice. If that would be really socially accepted–and I mean really accepted, not just some imaginary accepted by everyone just in order to treat the depressed–then I suspect a lot of depression would go away, because everyone who is depressed and fights to get out of bed everyday would have a real new choice, a real new option that is not looked down upon like "I want to die but everybody I love will be mad or sad". And having real options and choices you are free to take helps a lot if you are depressed. It's the feeling of having a lot of choices but being not allowed/accepted/able to take them that often stops one from finding the strength to fight back.
The way I see it is this: Suffering matters, and options to rid yourself of suffering should exist, including dying.
Dying wouldn't be the first course of action for most doctors (and it'd be doctors that would need to document). It is kind of like being in physical pain: You might think death is better right now, but when you heal a bit, you would rather not die, thank-you-very-much.
But for some folks, that healing doesn't really happen. Some folks go for years suffering and/or wanting to die. Same with physical pain. And if you've tried the cures available and have suffered, why wouldn't this be an option for folks? The same with any major, persistent mental illness honestly. Or any major illness that causes grief, pain, and/or disability. It isn't replacing mental health treatment, but it is adding another tool that replaces suicide that is hidden away. And honestly, I'm guessing it would give a few folks a light at the end of the tunnel. "If treatments don't work, I can eventually die painlessly if I choose".
You can have death available for non-critical patients alongside standards for getting such a thing.
https://www.theguardian.com/science/2017/oct/05/scientists-c...