A pilot study to explore next of kin's perspectives on end-of-life care in the nursing home.

ABSTRACT

OBJECTIVES: To explore next-of-kin's (NOK's) perceptions of end-of-life (EOL) care in the nursing home setting and to compare these perceptions for residents receiving hospice care plus usual care versus usual care only. DESIGN: Mailed survey. SETTING: Three nursing homes in central Massachusetts. PARTICIPANTS: Nursing home decedents' NOK MEASUREMENTS Nursing home decedents' NOK were identified from nursing home records. Survey data were collected on NOK demographics and perceptions of decedents' EOL care. This care included nursing home care and services received by decedents, pain and symptom management, communication about decedents' care, and advance directives. RESULTS: Of 164 surveys mailed, 114 surveys were returned (70% response rate) with 100 completed (61% used for analysis). NOK reported that nursing home decedents had a high symptom burden, with at least 70% experiencing pain, agitation, and/or anxiety, and 60% having shortness of breath or depression. Most NOK reported good-to-excellent symptom control for decedents (88%), feeling well informed about the decedent's condition (91%), satisfaction with medical and nursing care (90%), and the decedent having advance directives in place (89%). Respondents' impressions of decedents' symptom control, communication about decedents' care, level of care, or advance directives did not differ significantly between the hospice plus usual care and usual care only groups. CONCLUSION: In this pilot study, NOK perceived that decedents' EOL care in the nursing home was of similarly good quality under hospice care plus usual care and usual care only. Our study provides an approach to assessing quality of EOL care in the nursing home setting.