title: Vigilant at the end of life: family advocacy in the nursing home.
abstract: BACKGROUND
  Increasing numbers of Americans die in nursing homes. Little is known about the roles and experiences of family members of persons who die in nursing homes.
  
  
  METHODS
  The authors conducted 54 qualitative telephone interviews of close family or friends of individuals who had spent at least 48 hours in the last month of life in a nursing home. Respondents had earlier participated in a national survey that found 587 of 1578 decedents (37.2%) received end-of-life nursing home care. In qualitative interviews respondents described the last year of life, focusing on the nursing home experience. Interviews were analyzed by a multidisciplinary team to identify key themes of areas of concern.
  
  
  RESULTS
  An important interview theme revealed families often felt the need to advocate for their dying relative because of low expectations or experiences with poor quality nursing home care. They noted staff members who did not fully inform them about what to expect in the dying process. Respondents reported burden and gratification in care they themselves provided, which sometimes entailed collaboration with staff. Interviews also identified ways hospice care impacted families, including helping to relieve family burden.
  
  
  CONCLUSIONS
  End-of-life advocacy takes on increased urgency when those close to the dying resident have concerns about basic care and do not understand the dying course. Enhancing communication, preparing families at the end of life, and better understanding of hospice are likely to increase family trust in nursing home care, improve the care of dying residents, and help reduce family burden.
authors.affiliation: Center for Gerontology and Healthcare Research, Brown University, Providence, Rhode Island 02912, USA. renee_shield@brown.edu
authors.forename: Renee R
authors.initials: RR
authors.lastname: Shield
authors.forename: Terrie
authors.initials: T
authors.lastname: Wetle
authors.forename: Joan
authors.initials: J
authors.lastname: Teno
authors.forename: Susan C
authors.initials: SC
authors.lastname: Miller
authors.forename: Lisa C
authors.initials: LC
authors.lastname: Welch
mesh_terms: D000368:Aged; D002908:Chronic Disease / Q000401:mortality*; D003657:Decision Making; D005190:Family / Q000523:psychology*; D005260:Female; D019538:Health Care Surveys; D017051:Hospice Care / Q000592:standards* / Q000706:statistics & numerical data; D006801:Humans; D007326:Institutionalization / Q000706:statistics & numerical data; D008297:Male; D009735:Nursing Homes / Q000592:standards* / Q000706:statistics & numerical data; D010344:Patient Advocacy / Q000592:standards*; D011368:Professional-Family Relations; D011795:Surveys and Questionnaires