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End-of-life expectations and experiences among nursing home patients and their relatives—A synthesis of qualitative studies
Authors:Anette Fosse  Margrethe Aase Schaufel  Sabine Ruths  Kirsti Malterud
Affiliation:1. Research Unit for General Practice, Uni Health Research, Bergen, Norway;2. Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway;3. Department of Pulmonary Disease, Haukeland University Hospital, Bergen, Norway;4. Research Unit for General Practice, Copenhagen, Denmark
Abstract:

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.
Keywords:Attitude to death   Nursing homes   Doctor&ndash  patient relations   Terminal care   Family   Patient preference   Qualitative research   Meta-analysis
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