Susan was a successful journalist and the mother of three children when she was diagnosed with motor neurone disease, an irreversible condition that destroys the nerves that power the muscles. The symptoms had been gradual, and “subtle”, such as cigarettes slipping from her fingers. The diagnosis was a life expectancy of three to five years. Susan made an immediate decision to grasp every minute she had left.
“Many people don’t sign advance directives because they worry they’re not going to get any care if they say they don’t want [cardiopulmonary resuscitation],” said Courtright. “It becomes this very scary document that says, ‘Let me die.’”