End-of-life Expectations and Experiences Among Nursing Home Patients and Their Relatives--a Synthesis of Qualitative Studies

Objective: Synthesize research about patients' and relatives' expectations and experiences on how doctors can improve end-of-life care in nursing homes.

Methods: We systematically searched qualitative studies in English in seven databases (Medline, Embase, PsycINFO, CINAHL, Ageline, Cochrane Systematic Reviews and Cochrane Trials). We included 14 publications in the analysis with meta-ethnography.

Results: Patients and families emphasized the importance of health personnel anticipating illness trajectories and recognizing the information and palliation needed. Family members who became proxy decision-makers reported uncertainty and distress when guidance from health personnel was lacking. They worried about staff shortage and emphasized doctor availability. Relatives and health personnel seldom recognized patients' ability to consent, and patients' preferences were not always recognized.

Conclusion: Nursing home patients and their relatives wanted doctors more involved in end-of-life care. They expected doctors to acknowledge their preferences and provide guidance and symptom relief.

Practice Implications: High-quality end-of-life care in nursing homes relies on organization, funding and skilled staff, including available doctors who are able to recognize illness trajectories and perform individualized Advance Care Planning.