8 ms·

Please be dying, but not too quickly, part 2: The patient's perspective

115 points by abecedarius 3y ago

sbierwagen 3y ago
[flagged]
- dang 3y ago
  "Eschew flamebait. Avoid generic tangents." https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html
mensetmanusman 3y ago
Just heads Gervais speak on this: https://youtube.com/shorts/Qyd3ErC5_io?si=vWUTBl6zVUQeRAoc https://youtube.com/shorts/Qyd3ErC5_io?si=vWUTBl6zVUQeRAoc
yellow_lead 3y ago
There seem to be several issues with the current trial system: * 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.
- jquery 3y ago
  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.
- nradov 3y ago
  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.
- PeterisP 3y ago
  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.
  - BHSPitMonkey 3y ago
    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).
  - happytiger 3y ago
    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.
    - jdietrich 3y ago
      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.
denton-scratch 3y ago
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. I hope I don't sound callous or mean.
- lionkor 3y ago
  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.
  - Trow83949 3y ago
    People with weak "will to live" are just depressed. There is no need to overthink it.
- basisword 3y ago
  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.
  - ip26 3y ago
    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.
  - denton-scratch 3y ago
    > 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.
optimalsolver 3y ago
Great essay on dying in the modern medical system by a psychiatrist: https://slatestarcodex.com/2013/07/17/who-by-very-slow-decay/ https://slatestarcodex.com/2013/07/17/who-by-very-slow-decay...
- thombat 3y ago
  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.
- dmbche 3y ago
  That was so powerfully written, I'm shocked that I found it in a small comment. It's perspective changing. Wow.
  - optimalsolver 3y ago
    Be sure to check out his other stuff. Quite a unique writer: https://slatestarcodex.com/about/ https://slatestarcodex.com/about/
  - reducesuffering 3y ago
    Scott's writing is top notch. Wait 'til you read Archipelago and Atomic Communitarianism, and Meditations on Moloch for more perspective bending prose. https://slatestarcodex.com/2014/06/07/archipelago-and-atomic-communitarianism/ https://slatestarcodex.com/2014/06/07/archipelago-and-atomic... https://slatestarcodex.com/2014/07/30/meditations-on-moloch/ https://slatestarcodex.com/2014/07/30/meditations-on-moloch/
sieste 3y ago
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.
- lumost 3y ago
  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.
- inopinatus 3y ago
  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".
  - tayo42 3y ago
    Your probably used to it. The most predictable comments on anything about a study are "mice" and "N ="
  - A_D_E_P_T 3y ago
    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.
lars512 3y ago
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.
- imglorp 3y ago
  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.
- BadCookie 3y ago
  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.
  - deleted 3y ago
    [deleted]
  - deleted 3y ago
    [deleted]
- BHSPitMonkey 3y ago
  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".
tehwebguy 3y ago
> Telemedicine? No: on May 11, the feds declared an end of the “public health emergency” that allowed telemedicine across state lines. The people holding back telehealth should be uhhhhh asked to reconsider.
- zetazzed 3y ago
  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.
  - zielmicha 3y ago
    Is there anything that stops patients from lying that they are in a different state (just temporarily)?
    - userinanother 3y ago
      No but insurance might not cover it
    - pdonis 3y ago
      If the telemedicine app can geolocate your IP address it can independently determine what state you are in.
      - chmod775 3y ago
        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.
projektfu 3y ago
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.
- sdwr 3y ago
  What I remember from part 1 is that his tongue was cut out and chemo made him want to die. The series is a look inside the Type A personality. I see it as the intersection of addiction and unshakeable self-assurance.
- inopinatus 3y ago
  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.
- derstander 3y ago
  > 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. https://jakeseliger.com/ https://jakeseliger.com/
aszantu 3y ago
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. Get well soon!

115 points by abecedarius 3y ago

sbierwagen 3y ago

[flagged]

dang 3y ago
"Eschew flamebait. Avoid generic tangents." https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html

mensetmanusman 3y ago

Just heads Gervais speak on this: https://youtube.com/shorts/Qyd3ErC5_io?si=vWUTBl6zVUQeRAoc https://youtube.com/shorts/Qyd3ErC5_io?si=vWUTBl6zVUQeRAoc

yellow_lead 3y ago

There seem to be several issues with the current trial system: * 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.

jquery 3y ago
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.
nradov 3y ago
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.
PeterisP 3y ago
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.
- BHSPitMonkey 3y ago
  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).
- happytiger 3y ago
  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.
  - jdietrich 3y ago
    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.

denton-scratch 3y ago

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. I hope I don't sound callous or mean.

lionkor 3y ago
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.
- Trow83949 3y ago
  People with weak "will to live" are just depressed. There is no need to overthink it.
basisword 3y ago
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.
- ip26 3y ago
  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.
- denton-scratch 3y ago
  > 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.

optimalsolver 3y ago

Great essay on dying in the modern medical system by a psychiatrist: https://slatestarcodex.com/2013/07/17/who-by-very-slow-decay/ https://slatestarcodex.com/2013/07/17/who-by-very-slow-decay...

thombat 3y ago
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.
dmbche 3y ago
That was so powerfully written, I'm shocked that I found it in a small comment. It's perspective changing. Wow.
- optimalsolver 3y ago
  Be sure to check out his other stuff. Quite a unique writer: https://slatestarcodex.com/about/ https://slatestarcodex.com/about/
- reducesuffering 3y ago
  Scott's writing is top notch. Wait 'til you read Archipelago and Atomic Communitarianism, and Meditations on Moloch for more perspective bending prose. https://slatestarcodex.com/2014/06/07/archipelago-and-atomic-communitarianism/ https://slatestarcodex.com/2014/06/07/archipelago-and-atomic... https://slatestarcodex.com/2014/07/30/meditations-on-moloch/ https://slatestarcodex.com/2014/07/30/meditations-on-moloch/

sieste 3y ago

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.

lumost 3y ago
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.
inopinatus 3y ago
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".
- tayo42 3y ago
  Your probably used to it. The most predictable comments on anything about a study are "mice" and "N ="
- A_D_E_P_T 3y ago
  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.

lars512 3y ago

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.

imglorp 3y ago
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.
BadCookie 3y ago
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.
- deleted 3y ago
  [deleted]
- deleted 3y ago
  [deleted]
BHSPitMonkey 3y ago
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".

tehwebguy 3y ago

> Telemedicine? No: on May 11, the feds declared an end of the “public health emergency” that allowed telemedicine across state lines. The people holding back telehealth should be uhhhhh asked to reconsider.

zetazzed 3y ago
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.
- zielmicha 3y ago
  Is there anything that stops patients from lying that they are in a different state (just temporarily)?
  - userinanother 3y ago
    No but insurance might not cover it
  - pdonis 3y ago
    If the telemedicine app can geolocate your IP address it can independently determine what state you are in.
    - chmod775 3y ago
      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.

projektfu 3y ago

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.

sdwr 3y ago
What I remember from part 1 is that his tongue was cut out and chemo made him want to die. The series is a look inside the Type A personality. I see it as the intersection of addiction and unshakeable self-assurance.
inopinatus 3y ago
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.
derstander 3y ago
> 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. https://jakeseliger.com/ https://jakeseliger.com/

aszantu 3y ago

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. Get well soon!