Please be dying, but not too quickly, part 2: The patient's perspective
bessstillman.substack.com
bessstillman.substack.com
The people holding back telehealth should be uhhhhh asked to reconsider.
Sure, if something looks fishy you could then go through the appropriate legal channels to get a more exact location from the ISP, but false positives are going to happen so often, eventually everyone involved might get a bit cranky.
* Only the likes of Google have the scale and requisite information to keep more accurate and up-to-date databases, and even those are fallible.
You can't trust even that. There's an ISP which shares the IP pool between its child companies (? or some similar arrangement) in Crimea and Poland. We found out when Polish subscribers got affected by sanctions on business with Crimea.
Don't trust it for anything important ever.
The telemedicine visits themselves are conducted through MyChart. It's definitely not checking my IP or it would've caught me a long time ago, especially since I have to check the "I am currently in <x state>" checkbox every single time I see him :P
IE if I am a New Yorker being treated via telemedicine by someone in Alaska or Nigeria, should New York be concerned that I can be treated by someone it would not consider a “real doctor,” and may not even be a doctor in the jurisdiction they are in?
You can argue that the market would sort itself out eventually because those who didn’t know how to find useful teledocs would die out, but it’s up you you whether you are comfortable with that.
You’re using an edge case of a doctor in another continent to illustrate why we shouldn’t allow telemedicine appointment in the same country’s medical system across regions. That argument is classic false equivalence.
Imagine if we were restrictive in the first place... The luddites could teach us a thing or two.
No, it makes certification by State governments very difficult. The solution to that "problem" is obvious: stop the monopoly that State governments have on certifications. Let patients decide based on whatever information they deem relevant whether a doctor is "certified" to treat them. There are already many private sources of information about doctors.
Speak for yourself. I am at least as good as State governments at judging the competence of doctors to treat me. I suspect a lot of people are like me. I particularly suspect that a lot of people who have considerable experience dealing with doctors who were "certified" by State medical boards are like me. The question is not just how good or bad individuals are at it, but whether States are even worse.
But even if many are like you, I am not saying States cannot publish information about which doctors they think are certified. I am just saying that patients and doctors should not be restricted by that. Patients who want to rely on their State to do it can of course do that. But patients who want to make use of other information should be allowed to, and doctors should be allowed to treat them if the patients choose, without facing legal penalties.
Evidence, please?
What goes horrifically wrong if there are multiple certifying authorities for medical practitioners, with varying criteria, and various meta-organizations making recommendations about which certifying authorities are better than others, and people make informed decisions accordingly? Some people will absolutely make ill-informed decisions, and those should still be their decisions to make. That seems preferable to the world in which someone can't see the specialist they want to see because they're in another jurisdiction.
But for normal doc in the box telemedicine, it’s a recipe for disaster, as shitty doctors will shift or pretend to shift between state lines to avoid license disciplinary actions.
There’s so many NPs and PAs in practice now, the state requirements are unlikely to be a big burden for most cases.
There’s no need to risk death to drive to the doctor. There’s also no reason to risk death by getting ripped off or getting substandard care from a doctor of questionable ethics and ability. It’s pretty simple - you see an online provider in your state or a state with reciprocity.
I used to be familiar with medical frauds. Doctors who “see” 600 patients a day, etc. Online medicine is pretty bullshitty to begin with, but kneecapping the primary controls that we have to address fraud and abuse is not progress. Anything that undermines trust in the name of supposed convenience is a net negative.
I'm not on the inside of the family but I wonder if the author is pushing the trial much more than the patient. I hope not. I also hope that when/if this situation strikes my family, I am able to keep things in the patient's perspective. It seems like it may be very hard to do.
Desperation drives us all to be magical thinkers, even someone with a medical degree, and it's a natural error for hope to intensify into belief that somewhere out there is a magic potion that will solve all the health problems of the loved one they feel otherwise powerless to help.
Cue a billion words on substack.
The harsh part: just because you or someone you adore is (to use a medical term) circling the drain, doesn't make you/them more entitled to something. We are all already entitled (certainly morally, in many jurisdictions legally, and sometimes even financially) to the current standard of care, and sympathy besides, for any suffering or condition we are currently undergoing. We're all dying. Sorry. Some people carry the horrible knowledge that for them it will be soon, and from something specific. And at any given moment, that's actually quite a lot of people. Again, we can share a moment's sorrow.
The quiet part: if poor admission protocol fucks up the science for something that could extend or improve life for millions of others in future by advancing the standard of care, then it was the gatekeepers for that process that are culpable. Not even the hardest of hearts would seek to blame a patient, or their advocate, for trying something, anything. But they are nonetheless expected to default to a closed door.
The series is a look inside the Type A personality. I see it as the intersection of addiction and unshakeable self-assurance.
You needn’t wonder too much, you can satisfy your desire to know by simply reading Jake’s blog if you like.
Not sure if there was a link to it on the posted article, or if it was linked from one of the other parts in the series.
I'm cautiously hopeful that anti-aging related treatments will help improve this situation.
There are, and have been, a great many problems with the medical literature -- and in the way clinical trials are run. The article in OP highlights one potential problem, which would be difficult for researchers to fully account for. We shouldn't default to: "Surely they know what they're doing and it's no concern at all. Besides, how dare you cast doubt upon the good sense of those researchers."
That clinical trials are biased in favor of those who show up for them -- and that the ones who show up are, regardless of disease staging, in some sense subjectively "healthier" than those who can't summon the energy to deal with it -- is a legitimate concern. What evidence is there that it's routinely taken into account? We shouldn't take it on faith, and pointing to some framed credentials is no answer at all.
Make your own statement, sure, don't twist the words of mine to say something they didn't.
Edit to add, more bluntly: the assumption of incompetence seems to me as much a fallacy (perhaps of the general class of attribution bias) as any argument from authority. I will now be so bold as to make a claim, or even a series of claims: that humanity continues to push back the boundaries of ignorance, and that is what we call science, via the process of research, and it is a process driven by people, often well-meaning people many of whom put their heart & soul into it, and notwithstanding the myriad inefficiencies and inequities in the system, it is not depressing at all.
> "I merely ask you to imagine yourself in the shoes of someone that competent."
The principle of nullius in verba must apply regardless of how competent one imagines researchers are. If you've spotted a potential methodological problem, you can't just imagine it's solved or handwave it away. You should have a look for yourself and see how it was solved, if solved it was.
The exemplary individual I described earlier would undoubtedly also look backwards, at what mistakes were made, but also forward, to what improvements can be found. quo me cumque rapit tempestas. Again, this is not a depressing sentiment.
I agree about those doctors probably being competent but incentives are twisted and no one can extrapolate perfectly from an unrepresentative sample on an unknown drug, not even doctors or the drug creators.
The fact a bad outcome comes from well-meaning people doesn't make it less depressing.
a) Research has and continues to improve and lengthen life. That is not a bad outcome. Anyone thinking otherwise can fuck off to the prescientific luddite timeline they deserve. Can the system be better? Sure. Can we save everyone? Not yet.
b) It was clearly my comment being alleged to contain such an argument. I would not bother defending anything written in the article. Telling me my own remark is an argument in favour of something no-one even mentioned? Get real.
[Edited]: I should clarify that I mean phase 1/2 trials where there’s no efficacy data yet in humans. Phase 3 is a different matter.
* Search and filtering is very difficult
* After identifying the trial, it's hard to find if it's even open
* Need to establish care at the hospital conducting the study before determining eligiblity, but sometimes can rule out eligiblity earlier
* Can't usually establish care across state lines via telemedicine
It all seems very inefficient, or at least, not optimized for someone trying to find the most promising trial.
There are four pillars of medical ethics:
- Beneficence (doing good)
- Non-maleficence (to do no harm)
- Autonomy (giving the patient the freedom to choose freely, where they are able)
- Justice (ensuring fairness)
All of those factors need to be balanced.
If we’re honest this is optimized to kill people, especially poorer people or people without strong advocates.
It’s murder by the state when the state prevents you from receiving care that would otherwise be available to you, but for the law.
What conceivable purpose could a blanket ban on telehealth in the same country serve but protectionism. States can’t even opt in to allowing it — that is an ethics failure and desperately needs fixing.
I applaud anyone who chooses to participate in a trial because they want to contribute to advancing the frontiers of clinical knowledge, but I pity anyone who participates in a trial because they've got their hopes up about some shiny new treatment that is overwhelmingly likely to be a total waste of time. In my country, it's fairly common to see fundraisers for terminally ill young people to send them to America "for pioneering (i.e. completely unproven) treatment". My heart sinks every time I see it, because I know that the vast majority of those young people will end up dying just as quickly as they would have done without the trial, but with many of the last days of their life squandered in the pursuit of vanishingly thin odds.
https://slatestarcodex.com/2013/07/17/who-by-very-slow-decay...
https://slatestarcodex.com/2014/06/07/archipelago-and-atomic...
https://slatestarcodex.com/2014/07/30/meditations-on-moloch/
I can understand how attachment makes death a separation from everything, so a cause of dread for many; what I can't really understand is struggling to stay alive when the odds are heavily stacked against you. That must cause more pain and dread than just facing reality.
I hope I don't sound callous or mean.
Knowing that death is certain? Yup. In fact I never expected to live as long as I've lived.
> I think human instinct kicks in.
Well, there's some kind of motive, sure; but "human instinct" implies that all humans have it built-in. I'm a counter-example, and I'm not alone in that.
> It takes a true belief there is no hope to actually want to die rather than fight.
Oh, I don't want to die. I'd struggle, e.g. if I was faced with a murder; might as well have a go. But I wouldn't struggle like the folk in TFA to get access to unlicensed experimental cancer treatments.
I didn't read the first article, so I don't have the full context. It makes a huge difference if you have people counting on you. It makes sense to struggle for the sake of other people.
[Edit] Arguably, participating in a trial is struggling for the sake of other people; but that's not the attitude I got from TFA.
I _hate_ the vernacular of "fighting cancer". As a leukemia survivor, it wasn't a fight. You don't punch back. It's more akin to public flogging. My body was absolutely destroyed by the treatments, and as I watched myself turn from a human being to a not-yet-dead skeleton, I had to endure people calling me "brave" and a "fighter". It absolutely felt like public mocking (though the people around me certainly did not intend anything of the sort). I was forced to watch my loved ones struggle with my impending death. Only a couple people were able to actually discuss death with me, with everyone else dancing around the topic like I had nothing more than a bad sunburn.
I never lost hope, but I was expecting to die. The "fight" worldview kept my loved ones emotionally distant and distracted. Maybe that was good for their own mental health, but it certainly didn't help mine.
It seems like the two possible frameworks are fighting vs enduring? (Others?)
If I had to guess, we might choose to position the patient as a fighter because to fight against harsh odds requires courage, so what we're giving is the compliment that you are courageous. I think that's the intent at least.
I think a reasonable middle ground starts with acknowledging that being seriously ill is just a shitty situation, that over a long enough time frame death is inevitable, and that outcomes are often determined mostly by dumb luck. Not being in control can be very distressing, but the struggle to try and retain control often just compounds that distress. Willing someone to "fight" a cellular process within their body probably isn't going to help them in any meaningful way, but there are lots of things that can be done to make them more comfortable. Hope is valuable, but false hope is a kind of cruelty; we all need to be better at accepting the limits of medicine and recognising the threshold of futility.
I don't think believing in metaphysical beings provides any protection against depression. Espcially if you're facing problems you can't solve (i.e. helpless), and your chosen being doesn't come up with the goods. And "in the middle of cancer treatment" would be a bad time to lose your religion.
https://www.zocalopublicsquare.org/2011/11/30/how-doctors-di...
You have to remember that from the self's perspective, being dead is not an alternative to being alive. Being dead is the end where no alternatives exist. You are not choosing between life and death. You are choosing between immediate death or the continuation of experiences, followed by death.
He's got a lot behind him, all the chemo and meds probably screw up your kidneys and liver.
His face looks a lot like there's some allergy, or deficiency going on, if u want to take it to the extreme, try carnivore - it's an anti-inflamatory diet, that seemed to help a lot of people.
There was an article on hn a few weeks ago about seemingly unrelated conditions that can be visible on the skin.
Get well soon!