His Brother's Keeper by Johnathon Weiner
His Brother's Keeper
, by Johnathon Weiner, tells the story of brothers Stephen and Jamie Heywood. When Stephen is diagnosed with ALS (Lou Gehrig's disease) Jamie leaves his job and home in California and dedicates his life to finding a cure for his brother. The story is much more than that, however. At the time Weiner was researching and writing his story on the Heywoods for The New Yorker
, his mother was slowly deteriorating from a degenerative neurological disorder.The story becomes deeply personal and leads the reader to think of issues of medical research, cutting edge experiments, and patient consent. One topic I had not thought of much before was that of terminally ill patients and consent to experimental medicine. The question was raised as to whether the very desperately ill are in a state of mind to consent to untried therapies that may do more harm than good. I emphatically say that they are, and should be allowed to do so on compassionate grounds. The book ends while Stephen Heywood is still alive, so I went on Google and found his obituary here.
A great read.
Labels: ALS, Jamie Heywood, Johnathon Weiner, Stephen Heywood