title: Hospice family members' perceptions of and experiences with end-of-life care in the nursing home.
abstract: OBJECTIVE
  Even though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members' perceptions of and experiences with end-of-life care in the nursing home setting?
  
  
  METHODS
  This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community.
  
  
  RESULTS
  Outcome measures for family members of nursing home residents were compared (n = 176) with family members of community-dwelling hospice patients (n = 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting.
  
  
  CONCLUSIONS
  These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process.
authors.affiliation: Curtis W. and Ann H. Department of Family and Community Medicine, University of Missouri, Columbia, MO. Electronic address: oliverdr@missouri.edu.
authors.forename: Debra Parker
authors.initials: DP
authors.lastname: Oliver
authors.affiliation: Curtis W. and Ann H. Department of Family and Community Medicine, University of Missouri, Columbia, MO.
authors.forename: Karla
authors.initials: K
authors.lastname: Washington
authors.affiliation: Curtis W. and Ann H. Department of Family and Community Medicine, University of Missouri, Columbia, MO.
authors.forename: Robin L
authors.initials: RL
authors.lastname: Kruse
authors.affiliation: MU School of Social Work, Columbia, MO.
authors.forename: David L
authors.initials: DL
authors.lastname: Albright
authors.affiliation: Curtis W. and Ann H. Department of Family and Community Medicine, University of Missouri, Columbia, MO.
authors.forename: Alexandria
authors.initials: A
authors.lastname: Lewis
authors.affiliation: Biobehavioral Nursing and Health Systems, School of Nursing and Biomedical and Health Informatics, School of Medicine, University of Washington, Seattle, WA.
authors.forename: George
authors.initials: G
authors.lastname: Demiris
mesh_terms: D000328:Adult; D000368:Aged; D005190:Family / Q000523:psychology*; D005260:Female; D017051:Hospice Care; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D011787:Quality of Health Care; D011788:Quality of Life; D013727:Terminal Care; D014481:United States
keywords: Hospice; end-of-life; family; nursing home; palliative care