I have a very conscientious friend who used to drive across state lines to do a video visit from their car with an out of state provider. It's pretty wild to think about what a waste and time sink this is for families with complex illnesses.
At one point during the pandemic, I lived in a different state than two doctors who I saw virtually every few months (due to moving during the pandemic to a nearby city that happened to be just across the border). The state I lived in put fairly short deadlines on how long they'd allow out of state telemedicine, and whenever it came within a few weeks, they reiterated to the doctors I saw that they would _not_ extend the deadline...only to extend it at the last minute anyhow. By the time it finally didn't actually get extended, I had moved back, so I didn't need to actually make this decision, but the sense I got is that the ones who would have gotten in trouble would be the doctors, not the patients, and considering that I knew and liked these doctors (and obviously had a vested interest in them continuing to practice), I wouldn't have risked it for their sakes, despite the inconvenience.
I regularly see an out-of-state provider via telemedicine and no, nothing stops me from lying and saying that I'm in the same state as the provider. (He knows and doesn't care.)
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
You can just trust IP geo databases to be accurate down to the country* - and that's only most of them time and not even considering VPNs exist.
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 just trust IP geo databases to be accurate down to the country*
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.
My home IPs get placed into another country by geolocation all the time (it's probably more wrong than right). My VPN IPs (for which I always use either Finland or the Netherlands) have been geolocated to: three states in the US, Dubai, and several other EU countries.
I don’t totally know where I fall on this question but the obvious (isn’t it?) counter is that cross-jurisdiction telemedicine makes certification very difficult.
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.
> cross-jurisdiction telemedicine makes certification very difficult
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.
> people are never informed to make good decisions on this
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.
The number of people who are capable of judging the competence of doctors is dwarfed by the number of people who believe in quackery. We have a very real problem of people feeding their autistic children bleach in the belief that it will cure them ("miracle mineral solution"). Regulations inconvenience people like you and me, but they save a lot of people who need to be protected from the consequences of their own poor decision-making abilities. I consider that a worthwhile trade-off.
They are more often informed well enough to choose some endorsing body to delegate that decision to, and it's better that they have a choice of such endorsing bodies than a single one they may not agree with.
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.
How about we address problems with laws after we have a problem?
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.
Compact state licensure still requires you pay for other state licenses and go through their process, it’s just a lot faster since the states agree that your background check and data don’t need to be reevaluated from scratch. A doc would have to pay for every single state license in order to work nationally. But the VA and IHS already accept docs with any state license to work in their system at any site, basically creating a “national” license. It works just fine. It doesn’t increase risk of fraud, if someone is a fraudster they wouldn’t be able to practice anywhere after losing a national license.
In the context of clinical trials at cancer centers, sure.
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.
When you force people to come into the doctor for things they don't actually need an in-person visit for, you're making a lot of them drive there, and driving has risk of serious injury or death. You're also putting them in a room with other patients, some of whom will have contagious illnesses. Probably most importantly, you're causing some of them, who don't have the time or transportation to get to a doctor's office, to miss out on getting health care entirely.
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 feel sorry for Jake. This post is titled "The patient's perspective" but the only part that referred to his view was him saying he was too worn out to do more than a couple of flights.
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.
If you were here for part one, it opened with: "his only chance at survival is a miracle clinical trial drug".
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.
> I feel sorry for Jake. This post is titled "The patient's perspective" but the only part that referred to his view was him saying he was too worn out to do more than a couple of flights.
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.
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.
The system seems to select for people who are fit and healthy enough, and live long enough, to make the ordeal to get admitted to cancer trials. This means the results are not representative, and effectiveness of these trials is probably overestimated. Very depressing.
Imagine training for years in medicine, microbiology, biochemistry, statistical methods and so forth, then obtaining many more years of painstaking, mostly fruitless, and occasionally fruitful experience in designing and executing research and even entire research programs, correlating and validating results, sharing process improvement findings with equally capable peers, attending to ever more stringent regulation, worrying frequently over how to properly and carefully eliminate error and bias and the myriad sources thereof, only for some rando on the internet to dismiss your hard-won and nuanced understanding of how protocol and technique can lead to results that genuinely, in gestalt, improve the human condition, with "probably overestimated".
Your comment is a form of appeal to authority, and one which I think is unjustified under the circumstances.
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.
Actually it's a warning against making lazy assumptions, trite dismissals, and generally being an asshole, because of the human consequences. There's no appeal to authority, because that is an argument to support a claim, and no claim has been made. This here is rhetoric, subtype pathos: I merely ask you to imagine yourself in the shoes of someone that competent. If you've never met someone that competent and thereby doubt their literal existence, then I'm sorry for you.
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.
One part of either this post or the next one talks about how pharmaceutical companies are the ones making the entry criteria, and a doctor agreeing they were silly and telling the pharma that, but nothing changed.. the companies in turn have incentives to make results look good and have a known tendency to pick the healthiest possible subjects.
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.
What you were responding to was hardly a lazy assumption, and there was nothing rude about it.
> "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.
If that is your view then we are hardly in contradiction, except in our reading of the original remark.
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.
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.
The highly trained, nuanced, capable scientist you are describing is unfortunately only a small part of the bigger "system" I referred to, which also involves regulators, insurers, phone line operators, hospital staff etc (as described in the article). I don't think that the person who designs and evaluates the trial can control or correct for the biases introduced by all these additional factors. The only thing they can hope for is that the many errors average each other out, but the situation described by the article looks as though all errors point in the same direction...
This is probably true for most/all aging related conditions. Obviously, people can and do get such conditions while young - but for many, it's just a question of which condition becomes untreatable first.
I'm cautiously hopeful that anti-aging related treatments will help improve this situation.
It sounds like the system isn’t designed to enrol patients this way, via a systematic patient-driven search. Instead, it’s probably designed to identify and funnel eligible local patients in. From the prospect of the clinicians involved, they only need to fill the trial.
The system also appears to select for candidates with an organized, informed, highly motivated, support network. The patient the article was fortunate to have a full-time physician in their family to run the search, because nobody's doctor has weeks to spend on getting one patient into a study.
Right. Most clinical trials don’t work out. Even the ones that do often involve a placebo group. Participating in a trial is probably most suitable for someone interested in altruistically helping to advance medicine. Expecting to get a personal benefit from participating is probably misguided thinking in most situations, unfortunately.
[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.
The current approach does not seem suitable when dealing with rare conditions where the best patient/trial matches are geographically sparse. Efficient matchmaking would make this process far less taxing and miserable for the patients and families looking for options, even if the speedy answer is "sorry, but all the spots have already been filled with eligible patients in closer proximity to us".
It's definitely not optimized for someone trying to find the most promising trial, and IMHO it shouldn't be; if people are self-selecting into trials (and into different trials), then that adds confounders that can potentially make the whole trial useless at its core purpose, which is to establish the efficacy of a particular treatment, not to treat the patients - I mean, usually roughly half of the trial participants won't even get the treatment.
Fixing this problem doesn't imply patients getting to insert themselves into trials unilaterally. And surely the principal investigators of many of these "treatment for a rare condition" studies would similarly benefit from efficient matchmaking with compatible participants (obviously still at their discretion and subject to however the experiment is designed).
Medical ethics isn’t black and white like this though. Nor is the only purpose of trials to find treatments or cures. They have medical ethics review because they need to balance the risks and studies have controls by nature so you can get in to a study and not receive treatment.
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.
The vast majority of clinical trials fail - the majority of participating patients have to go through a barrage of inconvenient, risky and often painful procedures for no benefit whatsoever, or to their active detriment. The fact that seriously ill people seek out trials in the belief that it'll prolong their life is in itself an ethical failure. The reason we do clinical trials is so that we know which treatments actually work, to spare patients the cost and suffering of being subjected to a vast array of speculative treatments based purely on a hunch. Travelling across the country to be a guinea pig is not, for most people, how they would choose to spend their last days on earth.
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.
The current clinical trials system is designed to produce new scientific knowledge, and to satisfy FDA requirements for approving new products. Benefits to some patients are only a byproduct.
I wonder if making it easier for patients to find the most promising trial would improve the advancement of medicine. It's not strictly clear to me that this kind of self-selection would, although I suspect it would. I struggle to see the harm in letting patients do some kind of advanced filtering on studies they want to participate in.
My abiding fear is that the point where I'm sure I want no more life will arrive at the point where I have gone past the physical or mental ability to put that decision into practice. Like Lot's wife I'll be tempted to pause for one final look at the home I had, and so will all be lost.
Scott's writing is top notch. Wait 'til you read Archipelago and Atomic Communitarianism, and Meditations on Moloch for more perspective bending prose.
I'm OK with the prospect of dying (luckily). I have no serious responsibilties; nobody depends any more on me continuing to live.
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.
Have you ever been in a situation like you describe? I think human instinct kicks in. I've been in situations I thought I would rather be dead than in - but when in them you tend to want to fight even if the odds are against you. It takes a true belief there is no hope to actually want to die rather than fight.
I've been in those situations. Your description here does not match my experiences at all.
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.
Sorry for your experience. It was a bad choice of words. By 'fight' I simply meant choose to do everything possible to stay alive (even if that means simply enduring horrendous medical treatment despite the pain that comes with that) rather than deciding it's not worth it and choosing to die.
I'm sorry you had to go through that. Do you have any ideas on a better framework for society to approach this? As you allude, people intend the best for the patient, and this seems to be what we've come up with. "You are a fighter, you can do this."
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 the "fighter" rhetoric is specific to individualistic cultures that place a high premium on personal agency. Westerners in general and (liberal, college-educated) Americans in particular have a really hard time dealing with the idea that something might be largely or wholly out of their control. The opposite extreme would be fatalistic cultures, where one's death or survival is in the hands of god - deo volente, besiyata dishmaya, inshallah.
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.
Fantastic point - basically it'd be great to know how much it matters that the patient "fights". I do disagree that, "Willing someone to "fight" a cellular process within their body probably isn't going to help them..." in that we have some evidence that the mind can affect the body a fair bit, everything from the effectiveness of placebos to control of autonomic states. Who knows if one could rally better cellular defenses by feeling aggressive and active. One would be much more likely to stave off depression, which is caused by helplessness, especially if one doesn't have a higher power concept in their life that they could accept is in control.
> especially if one doesn't have a higher power concept in their life
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.
It also comes to mind that it is relatively uncommon in the human experience for things to just continuously get worse before they get worse. Most people have experienced things eventually getting better, teaching them perseverance and faith.
Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it.
> Have you ever been in a situation like you describe?
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.
Humans aren't logical beings. We don't continually evaluate the pros and cons of living and make our decision based on that. I think it's very human to want to live in even the most dire circumstances.
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.
Its possible that some people have a very strong "will to live", for whatever reason wanting to live on despite all circumstances. I would bet that people who have experienced extreme hardships but aren't satisfied with their life yet would not give up, even if it was the best thing to do.
it's weird to me, that food therapy hasn't come up yet. Most cancers thrive on sugar, might be one piece of hope. Also some patients reported that keto helped them get through chemo faster.
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.
The people holding back telehealth should be uhhhhh asked to reconsider.