Scott Alexander: Who By Very Slow Decay: "After a while of this, your doctors will call a meeting with your family and very gingerly raise the possibility of going to 'comfort care only', which means they disconnect the machines and stop the treatments and put you on painkillers so that you die peacefully. Your family will start yelling at the doctors, asking how the hell these quacks were ever allowed to practice when for God’s sake they’re trying to kill off Grandma just so they can avoid doing a tiny bit of work. They will demand the doctors find some kind of complicated surgery that will fix all your problems, add on new pills to the thirteen you’re already being force-fed every day, call in the most expensive consultants from Europe, figure out some extraordinary effort that can keep you living another few days...

...Your doctors will nod their heads and tell your family they respect their wishes. It will be a lie. Oh, sure, they will carry out the family’s wishes, in terms of continuing to provide the care. But respect? In the cafeteria at lunch, they will–despite medical confidentiality laws that totally prohibit this–compare stories of the most ridiculous families. “I have a blind 90 year old patient with stage 4 lung cancer with brain mets and no kidney function, and the family is demanding I enroll her in a clinical trial from Sri Lanka.” “Oh, that’s nothing. I have a patient who can’t walk or speak who’s breathing from a ventilator and has anoxic brain injury, and the family is insisting I try to get him a liver transplant.”

Every day, your doctors will meet with your family another time, and eventually, as your condition worsens and your family has more time to be hit on the head with a big club marked ‘REALITY’, they will start to relent. Finally, they will allow your doctors to take you off of the machines, and you will be transferred to Palliative Care, whose job I do not envy even though every single palliative care doctor I have ever met is relentlessly cheerful and upbeat and this is a total mystery to me. And you will die, but not quickly. It takes time for the heart to give up, for the lungs to fill with water and stop breathing, for the toxic wastes to build up. It is generally considered wise for the patient to be on epic doses of morphine throughout the process, both to spare them the inevitable pain as their disease takes their course and to spare their family from having to watch them.

…not that they always do. It can take anywhere from a day to several weeks for someone to die. Sometimes your family wants to wait at the bedside for a week. But a lot of the time they have work and things to do. Maybe they live thousands of miles away. You haven’t recognized them in years, you haven’t spoken a coherent word in months, and even if for some reason your brain chose this moment to recover lucidity you’re on enough morphine to be well inside the borders of la-la-land. A lot of families, faced with the prospect of missing work and school to sit by what’s basically a living corpse day in and day out for weeks just to watch it turn into a non-living corpse, politely decline. I absolutely 100% cannot blame them. There is a national volunteer program called No One Dies Alone. Nice people from the community go into hospitals to spend time with dying people who don’t have anyone else there for them. It makes me happy that this program exists.

Nevertheless, this is the way many of my patients die. Old, limbless, bedridden, ulcerated, in a puddle of waste, gasping for breath, loopy on morphine, hopelessly demented, in a sterile hospital room with someone from a volunteer program who just met them sitting by their bed...


#noted

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