One of my saddest, but also most powerful, raw, and formative memories was watching my grandmother die when I was 12. Her lymphoma had relapsed and she chose to put her effort and energy into preparing for her death instead fighting medically. She was a strong woman and fully prepared her estate. She collected every document, listed every account, and wrote detailed instructions (Later, my dad would still find things like the pinkslip pre-signed and in the glove box of the car when he went to sell it.)
When her time was close, my family pulled me out of school for two weeks and we went to stay with her until she passed. I mostly played in another room, but when it was time, I was called in and we held hands and watched her last breaths, and listened to her death rattle together, and cried together. That was the first time I saw my father cry.
It was tremendously sad, of course, but also beautiful, because it was the culmination of a life well lived. I learned a lot that day about the fleetingness of our short lives , the value of agency, and the human endeavor. It is the greatest gift my grandmother ever gave me and she did it from her deathbed. Sometimes when I lack motivation and struggle, I consider what I would want, think, and wish from my own deathbed. I consider the impact I want to have on my loved ones, and the cultural legacy I want to leave.
It taught me a lot too; that I want to be like your grandmother, and not like my family, when my time comes.
These aren't mutually exclusive. It's like saying "I think a huge part of the desire for fashionable clothing isn't even fashion, but the fear of being ostracized or left behind by one's social circle." A natural source of fear and uncertainty is stoked by people who find opportunity to make a buck off it.
"The American Way of Death" is a good book to read in that vein, although it's about the pointless, blindingly expensive ostentation of US burial rituals. The book was very successful and well-regarded; didn't change a thing.
Karl Ove Knausgaard starts one of his books off by talking about this exact thing. He made an interesting observation about how we seem to try to keep death at or below ground level (a morgue will never be on the second floor) - literally but also figuratively.
Bless you and her.
I saw this claim a while back and looked it up and it didn't seem true. Very few people actually refuse non-palliative treatment entirely for cancer. And the few who do refuse are usually not doctors but rather alternative medicine enthusiasts. Modern treatment can extend the lifespan of many of those with terminal cancers for a couple of years with good quality of life, and few say no to that; those years can be very meaningful for many.
What doctors do frequently decline is treatment near the end of life that's overwhelmingly likely to be futile or result in a low quality of life.
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."
Canadian Paralympian: I asked for a disability ramp - and was offered euthanasia
https://www.telegraph.co.uk/world-news/2023/09/02/canada-par...
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.
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.
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.
The additional obstacles you've listed all do seem less significant and more surmountable than not being allowed to grow the crop at all. And I can't find any evidence of the yield or drought tolerance actually being worse.
It's approved in the U.S., Canada and other countries but they don't sell it. Given that they are politicizing it so much you think they might grow 10 tons of it somewhere and sell small quantities of it so people could try it out ("get a $20 bag of rice and support its development") but (a) it defeats the narrative they're being victimized by Greenpeace and (b) people may or may not like the sensory characteristics.
I don't know how the GR2 trait itself impacts other agronomic characteristics but there is a principle that if an organism is spending energy on one thing it is going to have less for other things. A more definitely problem is that a small number of GR2 seed lines compete with a very large number of other rice lines. Even if the GR2 trait is neutral in other respects, the GR2 rice that is actually developed could be "ok" but not competitive with other seeds you could get.
In the US there is a staggering variety of Bt corn or Roundup-Ready soybean seeds because the technology has been licensed to and picked up by most of the big seed vendors so farmers can get seeds that perform well for them. Farmers want these crops because they help their bottom line. If somebody tries to ban them, they'll fight back.
PRRI doesn't have a lot of resources to develop a variety of optimized seeds, it doesn't have the deep relationships with seed vendors that (say) Monsanto has, it doesn't have a lot of enthusiasm from possible customers in the Philippines. If local farmers, public health authorities and such had organized to support it there could have been a different outcome. As it is PRRI comes across as another out-of-touch NGO.
There are all kinds of little silly things such as the fact that they will start charging you if you grow more than $10,000 worth of it. If they really are out to save people from illness, change the world, and normalize the idea of transgenic crops, they should be giving it away for free.
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...
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.
We do 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.
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.
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.)
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.
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.
> 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.
Thank you for making it. From what I've seen and experienced, the problem has been "garbage in, garbage out"—that is, there isn't sufficient data posted publicly on clinicaltrials.gov to figure out which trials are best and which are actually open and available. My wife wrote "Please be dying, but not too quickly: a clinical trial story. A three-part, very deep dive into the insanity that is the 'modern' clinical trial system" on using the system, and the actual experience of it: https://bessstillman.substack.com/p/please-be-dying-but-not-...
To figure out what's actually going on, we've had to make a lot of appointments and talk to oncologists to understand what is available and what isn't. The AI companies whose systems we tried missed the better treatments (e.g. BCA-101, or petosemtamab / MCLA-158), although we did not try yours, so perhaps it's capturing material others aren't. "Phone calls and appointments" are how I wound up learning about Seagen / Pfizer's antibody drug conjugate (ADC) PDL1V: http://jakeseliger.com/2024/04/22/the-emotional-trial-of-cli... (which appears to be working right now, albeit with side effects).
Right now, keeping a true system up to date would require a lot of phone calls, along the lines of VaccinateCA: https://worksinprogress.co/issue/the-story-of-vaccinateca/, which seems hard.
Your best bet in that case is the AACT database which is pretty accessible if you have a basic knowledge of SQL.
The main gap as you identified is that the trial information in CT.gov is quite sparse and not necessarily deep enough so a true system would need to perhaps also crawl first party sources (e.g sponsor websites) or research papers to find more information.
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.
A very interesting example on how social views influence healthcare decisions and costs can actually be seen in the US system via the Amish communities, the church health funding, and their views on medical interventions.
https://slatestarcodex.com/2020/04/20/the-amish-health-care-...
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.
https://www.npr.org/2010/09/24/130104047/who-decides-the-pri...
Depends on who the others are. If it's applied to my children, or other family, or even (possibly) really close friends... sane decisions result.
If on the other hand, it were you mihpdx (I don't believe we've ever met), then the money is always better applied to me. You could drop dead tomorrow, I wouldn't know, and I wouldn't much care if I did somehow find out. Our interests aren't even slightly aligned. Call me a monster if you like. But understand very carefully that most people are like me, even the ones pretending (mostly for social status) that they are the opposite.
> but I know it’s a decision that is being made irrationally.
It's not being made irrationally. Not even slightly. What's happening, is that some really big dorkwads are insisting that my interests (and many other people's) are different than they are. So when we act in ways that rationally move us towards our goals, these people start screeching that we're irrational. Or that "acting against our own interests".
Our collective actions are just some hodgepodge mixture of people acting and counter-acting against each other.
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.
Agreed, but taking care doesn't necessarily have to mean extending life as long as possible, all other factors be damned.
In some cases close to me, I believe people were kept alive through treatments that they were unable to consent to, and I believed they experienced a lot of extremely unpleasant things at the end of their lives for no benefit, and were robbed of the chance to say a peaceful and dignified goodbye.
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.
So reneging on the social contract with the old means reneging on the social contract with essentially everyone.
"Them" being destructive in response doesn't necessarily mean 85 year-olds burning things down, what it means is the 20, 30, and 40 year-olds seeing what's coming and burning things down.
The politics of infirmity always comes with some categories of who's allowed to be infirm, and who can safely be blamed for their own infirmity. Quite a lot of people advocate for worse treatment of the weak not to save money particularly but because they think it's ""deserved"".
Because I can think of none, at the individual level or societal level, excluding explicit mental illnesses which feel like a cop out.
Aside from Jigsaw, that is.
Of course real trade-offs exist here. It's a finite world, with finite resources.
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.
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.
Capitalism didn't lift anyone out of sh*t. In its heyday people were living and dying in industrial slums at a ripe old age of 40. Only after the USSR won Ww2 instead of 'crumbling down like a house of cards' how the capitalist press was expecting before the war that the sociopaths in the West had to give concessions to their people to compete with the Eastern Bloc so that the people wouldn't overthrow them.
When the USSR dissolved, they declared 'We won', and they started taking back all of those concessions. As a result, there are countries where people are killed if they cant pay for healthcare now.
> Cost/benefit analysis of medical treatment for the terminally ill does not suggest capitalism is "destructive"
It does.
This might be true on average. But if you need to spend $1 million keeping a death row inmate alive who tried to commit suicide, that money might be better spent on infants with heart defects. Money being finite (and being an abstraction of medical equipment/expertise/hours which are also finite), you ultimately have scenarios where you have to choose one or the other.
> This shows how destructive capitalism is: In its pursuit of maximizing the profits
If something costs more than you can afford, then it is unaffordable. This remains true even for those who despise capitalism. The great innovation of communism was the destruction of all the data that would allow one to have insight about whether or not something was unaffordable or not. In the United States, insurance companies are heavily regulated, and premiums must reflect how much it costs to pay out claims, plus some small percentage for overhead. Nor do the hospitals themselves strictly seek profit... their adversarial relationship with insurance companies compels them to overbill in the theory that if one claim fails, the next can succeed... so price it for both.
Profit-minimization isn't a very good strategy for long-term anything. If you want to be able to stay in business until next year so you can perform surgeries, you might have to, I dunno, at least break even.
These are fallacies of the capitalist ideology - it creates scarcities and then imposes these as truisms. There is more 'money' in the capitalist west than what's needed to treat every single person living there. Its just being hoarded.
> In the United States, insurance companies are heavily regulated, and premiums must reflect how much it costs to pay out claims, plus some small percentage for overhead. Nor do the hospitals themselves strictly seek profit... their adversarial relationship with insurance companies compels them to overbill in the theory that if one claim fails, the next can succeed... so price it for both.
You are talking literal nonsense. The most expensive healthcare with the worst results on the planet is in the US. Statistically. Every argument you made above is null and void.
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.
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.
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.
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.
If there's any credence to the observation of 5 stages of grief, this article is locked at the bargaining stage.
But so is the entire financial intelligence system: being incapable of recognizing nor authorizing the obvious dimensions of life beyond any calculus.
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.
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.
Where it digresses into observations about policy I find haphazard generalization from the specific.
What stands out is our culture's unrelenting bias towards reason over the unreasonable.
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.
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.
It's ok if the progress of the human condition takes longer than our own lives. We can become adapted to our nature.