Advocacy and Activism: Missing Pieces in the Quest to Improve End-of-life Care

Abstract

Increasing attention has focused on end-of-life care and has identified significant deficiencies in access and quality of care. When problems with quality or access to care have been identified for other diseases or conditions, the public has often responded vigorously. This paper describes two kinds of public action that have been effective in improving health care in other areas: advocacy and activism. However, a public response to improve end-of-life care has been muted. We discuss some of the reasons for this lack of response, and propose ways in which providers and funding agencies can work with patients and their families to improve end-of-life care.