Medical decision-making for people with disabilities

A recent Pennsylvania Supreme Court decision clarifies that health care providers – not family members – make the choice for life-sustaining care.

The Pennsylvania state supreme court ruled recently to require doctors to provide life sustaining care for patients who have intellectual disabilities. In other words, family members cannot step in to refuse treatment on the patient’s behalf.

Imagine you are in the hospital, not with a terminal condition, but unable to decide about the course of your care. You’ve never appointed someone to be your decision maker, so the hospital — and not your family members — makes the choice for you. And that choice must be to provide life-sustaining care.

That’s what the court decided recently in a case in which the parents of a man with intellectual disabilities didn’t want him put on a ventilator.

Josh Kershenbaum is a disabilities lawyer who was not involved in the case.

Kershenbaum: Some people view this decision as really protecting people with disabilities. They see it as making it so that the doctors don’t have a choice but to provide life sustaining care to people who are not competent to refuse it and who never were competent to refuse it.

Kershenbaum says the law applies to everyone who at the time of treatment cannot make decisions. That has special implications for those with disabilities.

Kershenbaum: That’s one thing if you’re a person who at one point in our lives could have been able to appoint someone to act on our behalf but there are people who suffer from disabilities that they have for their whole lives and as a result of those disabilities they were never legally competent to appoint an agent to act on their behalf.

Kershenbaum says the law also could be seen as discriminatory against people with disabilities. It never gives them a chance to have their family members make medical decisions for them. Kershenbaum says that while the law might have limitations, he thinks the court correctly interpreted it.