End of Life in Nursing Homes: Experiences and Policy Recommendations

About one in four American adults died in a nursing home in 2001, a proportion that has been increasing in recent years. Despite the growing importance of nursing homes in caring for the dying, little is known about the experiences or care of terminally ill nursing home residents. In this AARP Public Policy Institute Issue Paper, a team of researchers from Brown University's Center for Gerontology and Healthcare Research describes end-of-life care in nursing homes from the perspective of bereaved family members or others close to the decedents, and identifies policy issues and makes recommendations for policy change and professional training.

The members of the Brown research team – Terrie Wetle, Ph.D., Joan Teno, M.D, M.S., Renée Shield, Ph.D., Lisa Welch, M.A., and Susan C. Miller, Ph.D. – have elicited the poignant voices of bereaved family members while skillfully drawing out important themes from their experiences. These themes are used to make recommendations for improving services to dying residents in nursing homes and to their families.

The primary data for this study are drawn from 54 in-depth telephone interviews with relatives and others close to people who had lived in a nursing home or assisted living facility during the last month of their lives. The qualitative interviews were conducted between November 2001 and October 2002, one to two years after the death of the family member. (63 pages)