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The emotional trial of clinical trials: like online dating with death risk

jakeseliger.com

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Re: The emotional trial of clinical trials: like online dating with death risk

#111

Post by shiroiushi »

timr wrote: post #99
jseliger wrote: post #93

Earlier quoted context omitted.

Tell people that you don't know the answer I should probably clarify that point; oncologists are often dealing with small numbers and a lot of uncertainty. I'm also not sure how much they're supposed to say—I don't see the NDAs or other docs they sign with drug companies. That said, if they see tumors shrink in at least some patients, that's pretty good. I also have recurrent and metastatic squamous cell carcinoma or…

> I'm also not sure how much they're supposed to say—I don't see the NDAs or other docs they sign with drug companies. That said, if they see tumors shrink in at least some patients, that's pretty good. I mean, that's all they have to go on, so it's all they can say. But it's a long way from any sort of proof, and they really should only be saying "we don't know, and you're taking part in an experiment to find out".…

>there are sadly a lot of doctors who don't understand science

This is probably partly due to the history of medicine. It's not like engineering, which is fundamentally the practice of applied science. Medicine came from a very different path, basically like voodoo or witchcraft, and has been struggling to become more scientific. Many fields of medicine are fundamentally unscientific, such as chiropractic.

Also, doctors (mostly) aren't scientists or researchers at all: they're basically what non-medical engineers and scientists would consider "technicians". They use tools and knowledge the scientists and engineers have found or made, and apply them to individual problems (i.e. patients).

Of course, it doesn't help at all that the systems doctors work on (human bodies) are ridiculously complex, and themselves not at all a product of engineering. And on top of that, every human is somewhat different, so things that work on one don't work on others.

Personally, I think the entire field of western medicine, though it's still better than the ridiculously unscientific forms of traditional medicine it competes with, needs some work to improve its scientific foundations.

Re: The emotional trial of clinical trials: like online dating with death risk

#112

Post by m463 »

timr wrote: post #50

This was not what I expected to read, and therefore much sadder to me. I had expected to see an article about the emotional strain of not knowing if you're in the control arm or the treatment arm for a late-stage trial. You know that you're in an experiment, and you might get a new drug -- or existing standard of care -- depending on a roll of the dice. This was very different. The author is describing a mad scramble…

> the stress of not being well-informed

My experience with people working through a serious medical condition at the end of their life is - people are wildly trying to be informed, about themselves, the condition, the health care system, make good decisions, and...

...it is all just happening to you. You're in a wildly careening metal shopping cart, being banged up while bouncing down a long hill surrounded by speeding traffic, and no matter which way you lean, you're not quite steering.

Seeing this, I wish there were ways people could prepare for this, short of having to lose people in their life, or personally enroll in medical school.

I don't think anyone wants to plan for this stuff. I guess the ones who do have had a few close calls, or lived it vicariously, or really love the ones they'll outlive and are planning mostly for them.

Re: The emotional trial of clinical trials: like online dating with death risk

#113

Post by jcims »

jseliger wrote: post #93
timr wrote: post #50

This was not what I expected to read, and therefore much sadder to me. I had expected to see an article about the emotional strain of not knowing if you're in the control arm or the treatment arm for a late-stage trial. You know that you're in an experiment, and you might get a new drug -- or existing standard of care -- depending on a roll of the dice. This was very different. The author is describing a mad scramble…

Tell people that you don't know the answer I should probably clarify that point; oncologists are often dealing with small numbers and a lot of uncertainty. I'm also not sure how much they're supposed to say—I don't see the NDAs or other docs they sign with drug companies. That said, if they see tumors shrink in at least some patients, that's pretty good. I also have recurrent and metastatic squamous cell carcinoma or…

This article so clearly articulates the same chaos and uncertainty that I experienced in this exact same process with my wife’s cancer. The same experience that motivated my comment in the AskHN a couple of days ago asking how to engage the healthcare community to find opportunities to build something useful [1]

“Bess and I have learned not to wait. The healthcare system often moves slowly, and it’s good to be agentic. Insufficient agency is how people die while waiting for some indifferent bureaucrat to get back to them, or for some other bureaucratic process to spin up before the rapidly dividing cancer cells spin someone down”

So many little statements in that article ring true but I felt this deep in my core. Your notes about the onc being on vacation resurrected a little taste of the bile I had in my heart for the infuriating pace of everything.

I got to a point of deep, seething hatred for it all until one day my wife’s surgeon broke down crying on the phone. That little glimmer of humanity in what felt like a giant broken machine made me take a moment of pause and consider that some of the seeming indifference and immunity to the urgency might be self-protection. I have no idea what it’s like to work in a field where progress is so slow and the stakes are so high.

I wish you the best and thank you so much for sharing your journey so vividly. I think it really may be useful for those that find themselves in that same crucible.

1 - https://news.ycombinator.com/item?id=40089389

Re: The emotional trial of clinical trials: like online dating with death risk

#114

Post by short_sells_poo »

jcims wrote: post #113
jseliger wrote: post #93

Earlier quoted context omitted.

Tell people that you don't know the answer I should probably clarify that point; oncologists are often dealing with small numbers and a lot of uncertainty. I'm also not sure how much they're supposed to say—I don't see the NDAs or other docs they sign with drug companies. That said, if they see tumors shrink in at least some patients, that's pretty good. I also have recurrent and metastatic squamous cell carcinoma or…

This article so clearly articulates the same chaos and uncertainty that I experienced in this exact same process with my wife’s cancer. The same experience that motivated my comment in the AskHN a couple of days ago asking how to engage the healthcare community to find opportunities to build something useful [1] “Bess and I have learned not to wait. The healthcare system often moves slowly, and it’s good to be agenti…

I'm sorry for what your wife and you have gone through and I cannot imagine the frustration caused when being at the mercy of a seemingly uncaring bureaucracy and having little power to do anything.

I do think that more often than not, the doctors appear uncaring because they're under a very similar feeling that you experienced - but all the time. If they don't build emotional barriers, they wouldn't be able to cope. I feel this is doubly true for areas like oncology where death is a much more regular occurrence and can happen even when everyone has done everything right.

I cannot fathom the feeling of having to see people wither away, to see family after family lose their loved ones. Any doctor who doesn't learn to completely distance themselves from it all is probably not going to last.

Re: The emotional trial of clinical trials: like online dating with death risk

#115

Post by somenameforme »

jcims wrote: post #113
jseliger wrote: post #93

Earlier quoted context omitted.

Tell people that you don't know the answer I should probably clarify that point; oncologists are often dealing with small numbers and a lot of uncertainty. I'm also not sure how much they're supposed to say—I don't see the NDAs or other docs they sign with drug companies. That said, if they see tumors shrink in at least some patients, that's pretty good. I also have recurrent and metastatic squamous cell carcinoma or…

This article so clearly articulates the same chaos and uncertainty that I experienced in this exact same process with my wife’s cancer. The same experience that motivated my comment in the AskHN a couple of days ago asking how to engage the healthcare community to find opportunities to build something useful [1] “Bess and I have learned not to wait. The healthcare system often moves slowly, and it’s good to be agenti…

I think it's pretty easy to see things from the perspective of those in the medical field. You're treating a vast (and ever growing) number of people each year, you're overworked and buried in paperwork, and in the end - regardless of how much personal attention you dedicate (or don't) to somebody, their odds of survival are not going to change much. It's soul crushing work that's often paired with lots of quite dark humor. The more death you're around, the darker and more frequent the humor becomes, to the point I don't feel comfortable offering examples here. It's a coping mechanism.

And then after all of this you need to go to the next patient, smile, and do your best to make them feel comfortable and completely confident in everything you say, all the while they [understandably] see their or their loved one's case as the single most important thing in the world. If you want to create a tech solution for something, it would definitely be the paperwork. But it's mired in a million rules, regulations, and restrictions that alone probably make any sort of effort to streamline it probably unworkable if not unlawful.

Re: The emotional trial of clinical trials: like online dating with death risk

#116

Post by jcims »

somenameforme wrote: post #115
jcims wrote: post #113

Earlier quoted context omitted.

This article so clearly articulates the same chaos and uncertainty that I experienced in this exact same process with my wife’s cancer. The same experience that motivated my comment in the AskHN a couple of days ago asking how to engage the healthcare community to find opportunities to build something useful [1] “Bess and I have learned not to wait. The healthcare system often moves slowly, and it’s good to be agenti…

I think it's pretty easy to see things from the perspective of those in the medical field. You're treating a vast (and ever growing) number of people each year, you're overworked and buried in paperwork, and in the end - regardless of how much personal attention you dedicate (or don't) to somebody, their odds of survival are not going to change much. It's soul crushing work that's often paired with lots of quite dark…

It is when you sit and think about it of course. Our family has always had very dark humor and our daughter started her nursing career a year after her mom passed. No examples needed lol.

The challenge is maintaining that empathy in the face of an incredibly callous system.

Re: The emotional trial of clinical trials: like online dating with death risk

#117

Post by readyman »

VS1999 wrote: post #86
readyman wrote: post #44

Earlier quoted context omitted.

> The issue with the medical system is similar to the issue with prisons: It has no person that is motivated to care about it. Why prisoners must be able to vote or you cannot claim to have a democracy

Sounds good to me. We've been trying democracy for a while and I'd like to try something else.

For the reason above and many more, it is simply wrong that we have been trying democracy.

Re: The emotional trial of clinical trials: like online dating with death risk

#118

Post by timthelion »

I'm surprised and impressed at how much energy you have to deal with this and write about it. I'm a month out from having a squamous cell tumor removed from my tongue and a kneck disection and most of the time I just lie around in bed feeling sorry for myself and even that is pretty exhausting. I hope the trial drug works, both for you, and selfishly, for me in case I'll need it!

Re: The emotional trial of clinical trials: like online dating with death risk

#119

Post by s1artibartfast »

CogitoCogito wrote: post #110
s1artibartfast wrote: post #105

Earlier quoted context omitted.

I vehemently disagree that doctors should remain silent on their opinions. I think doing so would be very unethical and deceitful, by way of omission. However, they should be clear on what is option vs established consensus

> I vehemently disagree that doctors should remain silent on their opinions. I think doing so would be very unethical and deceitful, by way of omission. But do those opinions have any scientific basis? If there isn’t any evidence of efficacy yet, then should a doctor say there is because it’s his or her opinion?

No the doctors shouldn't lie.

However, rat studies, theory, experience, ect are all evidence.

If you are navigating uncharted territory, your should listen to the opinion of your local guide. "I don't like that drug because every one of my patients that took it died horrible deaths" might not mean much statistically, but if there isn't any other data, I would want to know. Same if my doctor thinks a treatment is crazy and will never succeed.

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