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 about. Choice, dignity, comfort are all thrown out of the window in favor of metrics and profit.
That bit about Golden Rice is a crock.<p>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 very few of them know about agronomy or the problems of marketing technology in the developing world.<p>Specifically: Golden Rice has to compete in terms of all the agronomic and gastronomic variables that matter to farmers and consumers. They aren't going to put up with worse yield, drought tolerance, etc. just for this one trait. The first version of Golden Rice didn't have a lot of Vitamin A, though the second version does.<p>There have been efforts across the last 50 years or so to get people in rural areas to switch to better cookstoves that are a great case study in just how hard it can be to get people in the developing world to adopt something new. It can be done, but Greenpeace is the least of the obstacles that they face.
<i>We humans really live for one another, and without other people and especially love, why bother?</i><p>Reading the essay I couldn't help but think that there was something missing from the author's calculations, and this quote really brought it home.<p>We <i>do</i> live for one another, and that brings not only personal benefits like the joy of loving and being loved, but societal benefits: it is part of what binds us together and makes us stronger in groups than we are alone.<p>The value of many actions is not purely in their direct effects, but also their performative value in demonstrating and reinforcing societal norms. This value is an externality in the calculations of the author. Spending enormous sums to add some small amount of time to a terminally ill person is a manifestation of a societal value for life, generally. When someone's life is in jeopardy, our societal norm is to try to save them if we can, without stopping first to count the cost. It is the same mentality that motivates expensive search-and-rescue operations. We don't abandon people to die at sea or on freezing mountaintops, even at enormous cost and when the person came to peril through their own foolishness. Not without at least trying, anyway.<p>These norms don't come from nowhere, though. Like all societal norms they must be taught and reinforced through action and demonstration. The author is only able to get away with counting the costs in the way he does because he is talking about his own life. If he wrote the same article about a stranger, it would seem to most people as a ghoulish violation of social norms. (Maybe not to some rationalists, I guess.)<p>But of course, in some sense he is right, at the aggregate level, we must think of these costs. And so -- in well functioning democracies, at least -- we delegate the aggregate decisions on these things to elected bodies, who make the aggregate decisions like deciding budgets for emergency services or subsidized health care, but not individual decisions about who will be saved.
"The future, which distinctly though barely missing, is going to be brighter than the present."<p>This one hit pretty hard. I am not a cancer patient who is missing a life saving treatment by 10 years, but it does feel like we are living in a sort of liminal space between religion and technology. Sure we have iphones and Netflix but we all still work 40-50 hour weeks. ChatGPT seems nifty but if I break my arm they will just throw a cast on it and tell me to wait it out.
<p><pre><code> > 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.
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Interesting perspective here.<p>The FDA maintains an open database of clinical trials that is accessible over at <a href="https://clinicaltrials.gov" rel="nofollow">https://clinicaltrials.gov</a> 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).<p>A writeup here about the background of this database for anyone interested: <a href="https://www.linkedin.com/pulse/bestworst-kept-secret-data-repository-life-sciences-charles-chen/" rel="nofollow">https://www.linkedin.com/pulse/bestworst-kept-secret-data-re...</a><p>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.<p>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: <a href="https://zeeq.ai" rel="nofollow">https://zeeq.ai</a>. Hopefully a useful tool for anyone that is interested in participating in or tracking clinical trials.<p>[0] <a href="https://clinicaltrials.gov/data-api/api#extapi" rel="nofollow">https://clinicaltrials.gov/data-api/api#extapi</a><p>[1] <a href="https://aact.ctti-clinicaltrials.org/" rel="nofollow">https://aact.ctti-clinicaltrials.org/</a>
A much deeper & wider-ranging article that I'd assumed from the title.<p>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.
Great NPR segment about the cost of a life, and who dialysis set a lin in the sand:<p><a href="https://www.npr.org/2010/09/24/130104047/who-decides-the-price-of-human-life" rel="nofollow">https://www.npr.org/2010/09/24/130104047/who-decides-the-pri...</a>
I’m so grateful for the author having written and shared this piece. I have similar thoughts - at what point is money to extend my life better applied to others? I don’t know how to decide that, but I know it’s a decision that is being made irrationally.
One thing about keeping sick people alive that financials don't cover - keeping up the social contract.<p>A society <i>must</i> 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.
Keeping anybody alive is worth it. The human species became a civilization only because it kept its then-unproductive weaker members alive - which allowed it to develop learning, technology, and all the things that revolve around them.<p>Even before that, it was able to survive and exist as a physically weaker species by taking care of and keeping alive its sick and wounded.<p>This shows how destructive capitalism is: In its pursuit of maximizing the profits to increase the hoards of imaginary wealth, it even destroys the most fundamental tenets that made humans a successful civilization.
This article circumscribes but fails to navigate the imperatives of life which sanity must regard as beyond the purvey of reason.<p>The question writ large but not asked is "What constitutes medicine?" versus all the other ways that we struggle to manage the messy and painful nature of life.<p>What hits me about the author's dialectic— and also the bulk of these comments— is the unexamined pre-disposition towards a calculus of life in place of a spiritual reckoning of its mystery. Such reckoning need be nothing more than a conscious observation of life's ultimate mystery; "conscious" in the sense of allowing this observation to inform the dialectic.<p>Regarding overt libertarian political jabs at Greenpeace or the FDA, the author fails to regard the the major purpose of policy is to restrain activity that causes general harm, not advance activity that leads to individual prosperity.<p>The author is facing the final conflict of every individual, that he shall meet his end in some fashion not of his own choosing with a dialectic of choice. This mode of discourse is internally unreconcilable.<p>If there's any credence to the observation of 5 stages of grief, this article is locked at the bargaining stage.<p>But so is the entire financial intelligence system: being incapable of recognizing nor authorizing the obvious dimensions of life beyond any calculus.<p>Here the true libertarian must acknowledge the limits of his discourse and turn attention to making the most of his circumstances, in which he has every right and responsibility to seek a path of his own, subject to a principle of freedom most succinctly stated as the liberty to do what you have to do, informed by a rich social tapestry of relationships all of which, if sane, must recognize the afore mentioned strange, yet obvious, dimension of life that manifests as a surplus beyond any a-priori design intention.<p>Where this article informs its readers of specific constraints in the author's experience and story of his path, it is truly valiant and valuable.<p>Where it digresses into observations about policy I find haphazard generalization from the specific.<p>What stands out is our culture's unrelenting bias towards reason over the unreasonable.<p>A mind wiser than mine has observed that today's science has quietly replaced any hope for an intelligible world with theories that are intelligible, with the attendant consequence to reason, that life may be beyond our "scope and limits" as grammatical creatures, and I will add to this my thought that we require a philosophy of the unknowable that let's us continue to explore the world's mystery in a way that nurtures a decent life, given our limits.<p>It's not paradoxical that social policy attempts to restrain us from the misfortunes that attend an "anything goes" California-ideology mindset in the interest of preventing harm from radical experimentation.<p>It's ok if the progress of the human condition takes longer than our own lives. We can become adapted to our nature.