title: They know!-Do they? A qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes.
abstract: BACKGROUND
  Residents living in long-term care facilities are a vulnerable population. For many residents, a nursing home is their place of death. Palliative care and end-of-life decisions are important components of their care provision.
  
  
  OBJECTIVE
  To study the views of cognitively able residents and relatives on advance care planning, end-of-life care, and decision-making in nursing homes.
  
  
  METHODS
  A qualitative study with in-depth interviews with nursing home residents and focus group interviews with relatives of nursing home residents. Analysis is based on interpretive description.
  
  
  METHODS
  In total, 43 informants from nine nursing homes participated in the study (25 nursing home residents and 18 relatives). All included residents had capacity to provide informed consent and lived in long-term care.
  
  
  RESULTS
  The main findings of this study were the differing views about decision-making and advance care planning of residents and relatives. Residents do trust relatives and staff to make important decisions for them. The relatives are in contrast insecure about the residents' wishes and experience decision-making as a burden. The majority of the residents had not participated in advance care planning. None of the residents stated challenges connected to end-of-life care or mentioned the wish for euthanasia.
  
  
  CONCLUSIONS
  Although most residents seem to be satisfied with decision-making and end-of life care, there is a need for systematic advance care planning. Advance care planning could help to explore future wishes for care and ease decision-making for the relatives, physicians, and staff and should be offered to all cognitively able nursing homes residents.
authors.affiliation: Department of Clinical Medicine, University of Bergen, Bergen, Norway Sunniva Centre for Palliative Care, Department of Internal Medicine, Haraldsplass Deaconess Hospital Bergen, Bergen, Norway Department of Anesthesiology, Intensive Care, Palliative Medicine and Pain Therapy, HELIOS Klinikum Schleswig, Schleswig, Germany bollig.georg@gmx.de.
authors.forename: Georg
authors.initials: G
authors.lastname: Bollig
authors.affiliation: Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway Molde University College, Molde, Norway.
authors.forename: Eva
authors.initials: E
authors.lastname: Gjengedal
authors.affiliation: Department of Clinical Medicine, University of Bergen, Bergen, Norway Sunniva Centre for Palliative Care, Department of Internal Medicine, Haraldsplass Deaconess Hospital Bergen, Bergen, Norway.
authors.forename: Jan Henrik
authors.initials: JH
authors.lastname: Rosland
mesh_terms: D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D003657:Decision Making; D005190:Family / Q000523:psychology*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D009735:Nursing Homes; D010361:Patients / Q000523:psychology*; D036301:Qualitative Research; D013727:Terminal Care
keywords: Nursing homes; advance care planning; decision-making; end-of-life care; family; long-term care; palliative care; residential facilities