title: Family experience with difficult decisions in end-of-life care.
abstract: OBJECTIVE
  The difficult decisions encountered by family caregivers in the process of care for patients with terminal cancer are seldom studied. Investigating their experiences with difficult decisions may help relieve their psychological distress. The purpose of this study was to determine the frequency and difficulty of decisions experienced in end-of-life care and to identify related factors.
  
  
  METHODS
  A cross-sectional study using questionnaires was conducted with family caregivers of patients who died of cancer in a university hospital. Difficulty of decisions and relevant influencing variables including demographic data, knowledge in palliative care and the Natural Death Act, and beliefs on the Natural Death Act were measured.
  
  
  RESULTS
  A total of 302 bereaved family caregivers were included in the final analysis. The most difficult decisions commonly encountered in both hospice and non-hospice wards related to truth telling, place of care, and alternative treatments. Logistic regression analysis demonstrated that older age (odds ratio = 0.92, 95% confidence interval = 0.89-0.95), not being the main family caregiver (0.20, 0.06-0.62), and less perception of burdens regarding the Natural Death Act (0.61, 0.37-0.99) were negatively correlated with the difficulty of decisions.
  
  
  CONCLUSIONS
  Families frequently encountered difficult decisions while caring for terminally ill loved ones. Better communication with family members, particularly the main caregiver, to diminish negative perceptions of the Natural Death Act could help to decrease psychological distress.
authors.affiliation: Department of Family Medicine, College of Medicine and Hospital, National Taiwan University, Taipei, Taiwan.
authors.forename: Hsien-Liang
authors.initials: HL
authors.lastname: Huang
authors.forename: Tai-Yuan
authors.initials: TY
authors.lastname: Chiu
authors.forename: Long-Teng
authors.initials: LT
authors.lastname: Lee
authors.forename: Chien-An
authors.initials: CA
authors.lastname: Yao
authors.forename: Ching-Yu
authors.initials: CY
authors.lastname: Chen
authors.forename: Wen-Yu
authors.initials: WY
authors.lastname: Hu
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001293:Attitude to Death; D017028:Caregivers / Q000523:psychology*; D016001:Confidence Intervals; D003430:Cross-Sectional Studies; D003657:Decision Making; D005190:Family / Q000523:psychology*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006785:Hospitals, University; D006801:Humans; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology / Q000628:therapy*; D016017:Odds Ratio; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D013624:Taiwan; D013727:Terminal Care; D019452:Terminally Ill