title: Perspectives of family members on planning end-of-life care for terminally ill and frail older people.
abstract: BACKGROUND
  Advance care planning (ACP) is the process by which patients, together with their physician and loved ones, establish preferences for future care. Because previous research has shown that relatives play a considerable role in end-of-life care decisions, it is important to understand how family members are involved in this process.
  
  
  OBJECTIVE
  To gain understanding of the involvement of family members in ACP for older people near the end of life by exploring their views and experiences concerning this process.
  
  
  METHODS
  This was a qualitative research study, done with semistructured interviews. Twenty-one family members were recruited from three geriatric settings in Flanders, Belgium. The data were analyzed using the constant comparative method as proposed by the grounded theory.
  
  
  RESULTS
  Family members took different positions in the ACP process depending on how much responsibility the family member wanted to take and to what extent the family member felt the patient expected him/her to play a part. The position of family members on these two dimensions was influenced by several factors, namely acknowledgment of the imminent death, experiences with death and dying, opinion about the benefits of ACP, burden of initiating conversations about death and dying, and trust in health care providers. Furthermore, the role of family members in ACP was embedded in the existing relationship patterns.
  
  
  CONCLUSIONS
  This study provides insight into the different positions of family members in the end-of-life care planning of older patients with a short life expectancy. It is important for health care providers to understand the position of a family member in the ACP of the patient, take into account that family members may experience an active role in ACP as burdensome, and consider existing relationship patterns.
authors.affiliation: Nursing Science, Department of Public Health, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium; Department of Geriatrics, Ghent University Hospital, Ghent, Belgium. Electronic address: ineke.vaneechoud@ugent.be.
authors.forename: Ineke J
authors.initials: IJ
authors.lastname: van Eechoud
authors.affiliation: Department of Geriatrics, Ghent University Hospital, Ghent, Belgium.
authors.forename: Ruth D
authors.initials: RD
authors.lastname: Piers
authors.affiliation: Department of Geriatrics, Ghent University Hospital, Ghent, Belgium.
authors.forename: Sigrid
authors.initials: S
authors.lastname: Van Camp
authors.affiliation: Nursing Science, Department of Public Health, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium.
authors.forename: Mieke
authors.initials: M
authors.lastname: Grypdonck
authors.affiliation: Department of Geriatrics, Ghent University Hospital, Ghent, Belgium.
authors.forename: Nele J
authors.initials: NJ
authors.lastname: Van Den Noortgate
authors.affiliation: Department of General Practice and Primary Health Care, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium.
authors.forename: Myriam
authors.initials: M
authors.lastname: Deveugele
authors.affiliation: Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium.
authors.forename: Natacha C
authors.initials: NC
authors.lastname: Verbeke
authors.affiliation: Nursing Science, Department of Public Health, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium.
authors.forename: Sofie
authors.initials: S
authors.lastname: Verhaeghe
mesh_terms: D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D001293:Attitude to Death; D001530:Belgium; D003142:Communication; D003657:Decision Making; D005190:Family / Q000523:psychology*; D005260:Female; D016330:Frail Elderly; D006801:Humans; D008297:Male; D008960:Models, Psychological; D036301:Qualitative Research; D013727:Terminal Care; D019452:Terminally Ill
keywords: Advance care planning; aged; family; terminal care