If You Had ALS, Which Option Would You Choose?
This is from Robin Hanson’s blog. It’s written by Hal Finney, who has learned that he has Amyotrophic Lateral Sclerosis or ALS, sometimes called Lou Gehrig’s disease:
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. … 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.
Wouldn’t it be easier for a Death Panel to make the choice for you?
Tough choice.
Having had this discussion with patients, this does not surprise me. When people are well informed, they often choose the less invasive option. The right offers no plan for people to have these discussions, so if they have their way, most of these decisions will be made in extremis.
Steve
Steve, why can’t people have the discussions without the government scripting the answers?
As people age and face diminished capacity, they often begin to accept their demise. I can easily understand how some people would resist the idea of indefinite life in a wheelchair tied to a breathing apparatus.
Religious/ethical scrupples once, and still for some, made the choice obvious. Now it is a matter of how much discomfort and inconvenience one is willing to put up with.
So much for the myth that people always want to extend life no matter what the cost. To bad so many people believe it. Worse is that that they think it is just fine to limit their supposed costs by supporting death panels.
That would be a very difficult choice for me. I can’t imagine being in that position.