11–20 of 72 posts
A society must take care of its weak and old, unless you want these people to reneg on the contract and start being destructive. Marginalizing and neglecting a social group is step 1 towards fostering terrorism.
A much deeper & wider-ranging article that I'd assumed from the title. Though I don't see anything on whether "the cost of keeping me alive" should include a "...under America's dysfunction and greed-centric health care system" clause.
If that's what you got from the article you clearly missed the most important point.
> The big caveat to saying that I’m not worth keeping alive, though, outside the value the people who love me claim I provide, is that I’m also generating data for clinical trials helps move the state-of-the-art forward.
The FDA maintains an open database of clinical trials that is accessible over at https://clinicaltrials.gov and they have an API available as well[0]. A separate group called the Clinical Trials Transformation Initiative (CTTI) out of Duke maintains the AACT database[1] that is a nightly export of the FDA database to Postgres (useful for anyone that wants to do data analysis on clinical trials).
A writeup here about the background of this database for anyone interested: https://www.linkedin.com/pulse/bestworst-kept-secret-data-re...
There are a few companies in this space that provide patients a way to find clinical trials and most regional healthcare systems will have a web page dedicated to listing their ongoing clinical trials.
For my part, I've been building an AI agent that watches the daily change feed from clinicaltrials.gov and sends out a personalized newsletter that filters for specific trials and answers specific questions about those matched trials: https://zeeq.ai. Hopefully a useful tool for anyone that is interested in participating in or tracking clinical trials.
I recommend anyone who is interested in this area read "Being Mortal: Medicine and What Matters in the End" by Atul Gawande. Not just for the financial aspects, but an overall deconstruction of the broken end-of-life care system in the country. By making "extend one's life for a few days/weeks by any means necessary" as the gold standard for good medical care, we have lost sight of what healthcare should actually be…
Edit to excerpt a great review from Goodreads: "If you think you might get older as time goes by and/or think you might even die at some time (or have relatives or other loved ones to whom this might apply), I urge you to read this book."
That bit about Golden Rice is a crock. I'm not saying it couldn't play a positive role or that I think it is dangerous, but there are (1) many ways to get Vitamin A, (2) many problems in global nutrition other than Vitamin A. Trying to picture the developers like Prometheus getting their liver torn out every day just isn't helpful. The fact that they got 100 Nobel Prize winners to sign their petition is bunk because…
The thing that I haven't been able to really understand, is why aren't these areas able to grow other vitamin A rich crops? The climate and environment is usually fine for growing something - yams, mangos, cantaloupe, carrots, etc. I can see that sometimes it's a cost thing as those sell for higher prices or are more expensive to preserve than rice. But it seems that farmers stick with regular rice because that's wha…
Ignorance is a big part of why foods get fortified. Scurvy is making something of a comeback among wealthy kids eating an unhealthy diet because high temperatures destroys Vitamin C so you need to eat un/minimally cooked foods or have it added back in. https://www.timesofisrael.com/scurvy-makes-a-shocking-comeba...
A much deeper & wider-ranging article that I'd assumed from the title. Though I don't see anything on whether "the cost of keeping me alive" should include a "...under America's dysfunction and greed-centric health care system" clause.
It seems people are disagreeing with you, maybe because your statement is short and seen as political. However, you do have a valid point. Even in socially funded systems there has to be a cutoff on what care will be funded and what will not based on the views of society and the potential costs vs benefits (including probability of sucess). A very interesting example on how social views influence healthcare decisions…
It goes even further than that though, when you start to allow for the full force of real-world economics.
These types of discussions (end-of-life economics, life value) tend to make these idealistic assumptions, that actors (providers, payers) are rational and acting in the best interest of the patient against the constraints of reality. Often like the essay, this is probably accurate.
Where it gets messy, as the OP is pointing to, is when you start admitting that sometimes providers, payers, or other individuals or entities don't have your best interests in mind, are irrational, or something else. Canada, for instance, has a socialized health care system, but also has evoked a lot of criticism for scenarios where individuals seem to be counseled into euthanasia apparently because they're lower SES, or to avoid state responsibilities (not to pick on Canada, or to argue for or against their health care policies, only to point to it as an example of potential problems that arise).
We have enough problems accurately valuating lives while people are alive and healthy; doing so with passive or active killing (for lack of a better term) raises even more economic and ethical issues. We tend to think of people as fixed unchanging objects that can be perfectly measured, which is far from the case. I have acquaintances that I can think of, for instance, that spent years doing lower-paid jobs before getting into, and then graduating from, medical school. What is the value of that person and how should we valuate it at any given moment? Are standardized tests a perfect or even, really good, measure of ability? Not really. Why is someone's life situation the way it is? Is there something else that could be done?
In my opinion, before discussions of "life value" have any traction, there has to be an equally skeptical discussion about the value of those valuations to the entity doing so, and why. What incentives do the "valuators" have in making that valuation? Often in the US we even talk about incentives to providers and so forth for artificially prolonging life and providing pointless care, but incentives can just as easily work the other way too.
In a lot of ways this is what's meant by "you can't put a value on a human life". Clearly there's a lot to that statement, but I think in part it reflects the starkness not of death but everything wrong with the processes by which we value people in general.
One thing about keeping sick people alive that financials don't cover - keeping up the social contract. A society must take care of its weak and old, unless you want these people to reneg on the contract and start being destructive. Marginalizing and neglecting a social group is step 1 towards fostering terrorism.
In a society with limited resources, is keeping one old person alive worth 10 child/years of education? Worth heart surgery for a 50-year-old? Worth basic medical care for a dozen poor families?
Yes, the social contract says that we have to care for old people, including medically. It also says we have to educate children, and care for the poor, and provide medical care for everyone else. None of those claims on the social contract gets an unlimited budget, because the other claims are also out there, and society doesn't have unlimited resources.
> The big caveat to saying that I’m not worth keeping alive, though, outside the value the people who love me claim I provide, is that I’m also generating data for clinical trials helps move the state-of-the-art forward. Interesting perspective here. The FDA maintains an open database of clinical trials that is accessible over at https://clinicaltrials.gov and they have an API available as well[0]. A separate group c…
That bit about Golden Rice is a crock. I'm not saying it couldn't play a positive role or that I think it is dangerous, but there are (1) many ways to get Vitamin A, (2) many problems in global nutrition other than Vitamin A. Trying to picture the developers like Prometheus getting their liver torn out every day just isn't helpful. The fact that they got 100 Nobel Prize winners to sign their petition is bunk because…
I recommend anyone who is interested in this area read "Being Mortal: Medicine and What Matters in the End" by Atul Gawande. Not just for the financial aspects, but an overall deconstruction of the broken end-of-life care system in the country. By making "extend one's life for a few days/weeks by any means necessary" as the gold standard for good medical care, we have lost sight of what healthcare should actually be…