Family perspectives on end-of-life care experiences in nursing homes

PURPOSE: The purpose of this study is to expand knowledge regarding end-of-life care received in nursing homes through the use of narrative interviews with family members close to the decedents. DESIGN AND METHODS: We conducted follow-up qualitative interviews with 54 respondents who had participated in an earlier national survey of 1,578 informants. Interviews were taped and transcribed and then coded by a five-member, multidisciplinary team to identify overarching themes. RESULTS: Respondents report that the needs of dying patients are often insufficiently addressed by health care professionals. Their low expectations of nursing homes and their experiences cause many to become vigilant advocates. Respondents report that physicians are often "missing in action," and they desire more and better trained staff. They indicate that regulations reinforce task-focused rather than person-centered care and add to patient and family burden. Although hospice services are reported to enhance end-of-life care, respondents also report late referrals and occasional misunderstandings about the role and scope of hospice. IMPLICATIONS: Sustained efforts on many fronts are needed to improve end-of-life care in nursing homes. Policy recommendations are suggested.