Experiences of End-of-Life Care in U.S. Nursing Homes: A Qualitative Interpretive Meta-Synthesis (QIMS)

Background/Purpose: Currently 4% of Americans over the age of 65 years old live in a nursing home (NH). NH care is often inextricably linked with poor quality-of-life (QOL). Over one fourth of all deaths in the U.S occur in NH, making this the last place of residence for many older adults. This study examines end-of-life (EOL) care within the context of NH settings through the lens of residents and carers. For this study, “carer” is defined as health care staff and professionals, family members, guardians, and healthcare proxy.

Methods: This study utilizes a specific methodology analyzing qualitative research, a Qualitative Interpretive Meta-Synthesis (QIMS). The QIMS is a synergy of findings, merging qualitative research to enrich the knowledge base of qualitative studies. This QIMS specifically focused on EOL care among U.S. NH through the lens of residents and carers. In this study, a purposive sample was gathered using academic databases. Search terms used were “qualitative study”, “nursing home resident”, “qualitative”, “nursing home”, “ethnography”, “phenomenology”, “narrative”, “end of life”, and “death”. The preliminary search across databases produced a total of 1,343 articles. Of these 1,343 manuscripts, 1,296 were excluded as they were duplicates and/or deemed not relevant to the topic based on title and abstract screening. A total of 47 articles were retrieved for a full-text review meeting the inclusion criteria: 1) qualitative research of EOL care in U.S. NH with direct quotations of participants, 2) peer-reviewed published journal article, 3) perspectives or experiences of care for residents’ in NH. The final QIMS sample includes eight articles (N=8).  

Findings: This analysis generated the following overarching themes: 1) Care setting: agency missions, regulations, and stakeholders affect EOL care; 2) Health care staff: “frontline” personnel providing hands-on care impacts resident QOL; 3) Symptoms: symptoms experienced by residents; 4) Relationships: interpersonal connections between resident and staff are important for meeting daily care needs of residents; 5) Carers’ expectations: carers respond to the care delivery system by outwardly expressing expectations regarding poor quality care and report burden and stress related to substandard care by NH staff; 6) Resident care needs: residents nearing EOL need increased attention and care; 7) Communication: communication regarding EOL care and the care delivery system is reported as broken between residents, family members, NH staff, and physicians; 8) Unique to end-of-life: new emerging theme addresses the unique components to end-of-life care; 9) Negative cases: EOL care in NH is often reported as negative, however this was not consistent across the total sample.

Conclusions: Results of the QIMS suggest a need for continued improvements in the care delivery system as gaps remain in the current NH delivery model for EOL. NH social workers must continue with advocacy efforts for improved care and social justice in NH settings, particularly for EOL care. Results of this study highlight the need for equity in the care delivery system for older adults nearing EOL in NH. Recommendations for how carers and allied health care professionals can use this research to inform their care practices are offered.