Sadly Hal Finney, who wrote many great posts here at OB, has ALS:
ALS … is only mostly fatal. When breathing begins to fail, ALS patients must make a choice. They have the option to either go onto invasive mechanical respiration, which involves a tracheotomy and breathing machine, or they can die in comfort. I was very surprised to learn that over 90% of ALS patients choose to die. And even among those who choose life, for the great majority this is an emergency decision made in the hospital during a medical respiratory crisis. …
Probably fewer than 1% of ALS patients arrange to go onto ventilation when they are still in relatively good health, even though this provides the best odds for a successful transition. With mechanical respiration, survival with ALS can be indefinitely extended. And the great majority of people living on respirators say that their quality of life is good. …
There are a number of practical and financial obstacles to successfully surviving on a ventilator, foremost among them the great load on caregivers. No doubt this contributes to the high rates of choosing death. But it seems that much of the objection is philosophical. People are not happy about being kept alive by machines. … I hope that when the time comes, I will choose life. …. Stephen Hawking, the world’s longest surviving ALS patient at over 40 years since diagnosis, is said to be able to type at ten words per minute by twitching a cheek muscle.
Medicine and health are strange and distorted in large part because of the misnamed “fear of death.” If we really feared death, we would think hard and critically about how to avoid death, and we would succeed a lot more. Instead, however, we fear thinking about our own death, especially in near mode. Near mode favors practical analytical reasoning, while far mode favors symbolic creative reasoning. When we are forced to think about our death we run screaming into far mode, placing us at a further psychological distance, but hindering our ability to think practically.
My best idea for reforming medicine is for us to each put our medical decisions in the hands of someone with expert knowledge and a clear financial incentive to make good health vs. cost tradeoffs. Unfortunately, this suggestion to put med choices in an expert hard-headed near-mode mind doesn’t hit the right symbolic chords in our far-mode avoiding-death-thoughts minds.