On the road to reform: advocacy and activism in end-of-life care.

Abstract

This paper argues that the general public is, and should be, an important source of activity in end-of-life care reform. Two roles for the public are described: personal advocacy and public activism. The first relates to the role of private citizens in advocating on their own or a loved one's behalf at the end of life to secure quality palliative care. The second relates to the role of leaders in mobilizing reform efforts on behalf of the larger society. These roles overlap and often function to bolster one another. Numerous examples of how advocacy often transforms into activism and how activism relies on advocacy are given, drawn from the experience of directing Community-State Partnerships to Improve End-of-Life Care, a national program housed at Midwest Bioethics Center in Kansas City, Missouri.