End-of-life decisions in a developmental center: a retrospective study.

Abstract

Residents of developmental centers deserve care at the end of their lives that is consistent with their wishes. When their wishes are unknown, as is often the case, the care that they receive should be in their best interests. One way of determining whether care is in a resident's best interests is to hold a formal discussion leading to a decision about end-of-life care, known as an “end-of-life decision.”1 We investigated the prevalence of end-of-life decisions in a modern developmental center. Our center provides long-term care, from youth to death, to 850 people with severe developmental disabilities, whose demographic features have previously been published.2 All residents are unmarried and childless; 20% have a family involved in their welfare decisions. The center's annual budget is $115 million, or $135,000 per resident.