[paxys]

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.

[s1artibartfast]

I think a huge part of it isnt even corporatism, but social and cultural avoidance and fear of death. US culture, the only one I claim to speak for, is in denial about death. We hide it away, pretend it wont happen, and then when it does, we lie to the children and try to suppress it ourselves. We drag death out medically, and then have no time to be with the dying. Doing this leads to not only neurotic choices from the living, but strips some of the poignancy, beauty, and urgency from life itself.

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.

[3523582908]

I had the opposite experience when my grandparents died -- I watched everybody in my family cling on to ventilators, invasive treatments, and chemotherapy, for both of them to die painfully attached to tubes in an emergency hospital ward. My aunt whispering maniacally to my grandma: "don't go towards the light!" Family members talking over my grandmother's last words.

It taught me a lot too; that I want to be like your grandmother, and not like my family, when my time comes.

[pessimizer]

> I think a huge part of it isnt even corporatism, but social and cultural avoidance and fear of death.

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.

[s1artibartfast]

I think trained consumerism is a big part of it. People are trained to think (usually erroneously) that the solution to every problem is a product or service.

X will make me happy, Im sad because I dont have Y. There are absolutely outside forces pushing this, but there is also a deficit of cultural forces and norms pushing back. Its not that people are being bombed by advertising for expensive burials, but that they have low experience with excellent and cheap alternatives. Human culture is slow to change, and usually does so on the order of decades or generations. Any impact from things like books will be at the margin, especially since most readers are already inclined to agree.

[foobarian]

I have every intention to do the same. The only thing that gives me nightmares is to lose mental capacity, which it seems your grandmother was lucky to keep to the end. My aging friend circle keeps throwing around ideas of various dead man switches to cut short any kind of mental decline.

[s1artibartfast]

Me too. She didnt have mental capacity all the way to the end, but her proactivity in confronting death allowed her to take actions and make her wishes clear before she mentally deteriorated.

That said, deterioration from dementia is a whole different beast. Fentanyl seems like a quick way to go, but it would be hard deciding when to pull the plug, and how long you have before you lose the option.

[pdfernhout]

Thank you for sharing that beautiful, insightful story about your grandmother's life and death.

[dpig_]

> culture ... is in denial about death. We hide it away,...

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.

[psychlops]

Thanks for sharing that story.

[iancmceachern]

I had a very similar experience with my grandfather and his lymphoma.

Bless you and her.

[javajosh]

A doctor friend of mine put it succinctly: let old people die; that's what they do. End-of-life interventions are not for benefit of the old, they are going to die anyway. It is an entirely perverse financial incentive that aligns with a positive "life preserving" incentive that fails to adjust to the nuances of natural human mortality. I believe this applies to the terminally ill as well. This is why most doctors refuse (non-palliative) treatment for terminal cancer diagnoses.

[pcwalton]

> This is why most doctors refuse (non-palliative) treatment for terminal cancer diagnoses.

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.

[llamaimperative]

And fear. Our culture is not good at death. Thanks for the book recommendation, definitely going to pick this up!

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."

[rqtwteye]

It would great if we had a better culture around dying. My parents are in their 90s. When I get to the senior home they live and talk to people it’s pretty clear that it would often be better if people could just say “enough is enough” and go out with dignity and respect. A lot of people there just live day by day and wait for it to be over.

[hirvi74]

> it would often be better if people could just say “enough is enough” and go out with dignity and respect

My father desires this. He was a nurse for much of my life. He is adamant about two points in regards to his death and the events leading up to it:

1. He will never become a burden.

2. He will not die in a hospital bed.

He believes that when it is his time to go, then it is his time to go. No point in delaying the inevitable. As a nurse, he has seen many patients receive treatments and the outcomes/prognosis that results from said treatments. Based on many of the stories I have heard through out my life, I think I can greatly sympathize with his views. Though, I myself am a bit too neurotic about death to have such a view.

My father has stuck to his guns though. He's in his 70s. Annual checkup? Doesn't do them. He doesn't even know nor care about his blood pressure, cholesterol, etc.. Routine colonoscopy? Never had one.

He's told me since I was young, "The day I can't tie my own shoes is the day I'm calling it quits." I seriously believe him and I have the utmost respect for him too.

[gadders]

It could be worse, you could be in Canada.

Canadian Paralympian: I asked for a disability ramp - and was offered euthanasia

https://www.telegraph.co.uk/world-news/2023/09/02/canada-par...

[n8henrie]

I'm a physician. I offered to buy a copy of Being Mortal for anyone in my family that promised to read it!