title: End-of-life discussions and preferences among persons with HIV.
abstract: BACKGROUND
  Deficits in advance care planning leave many patients and their physicians unprepared for decisions about end-of-life care. Even though the prognosis has improved for many persons with human immunodeficiency virus (HIV) infection, a need for planning remains.
  
  
  OBJECTIVE
  To evaluate prevalence of end-of-life discussions, use of advance directives, and preferences concerning end-of-life care and their relationship with patient demographics, clinical status, psychosocial variables, and practitioner characteristics among HIV-infected persons.
  
  
  METHODS
  Cross-sectional survey of a US probability sample of 2864, which represents 231 400 adults receiving care for HIV, conducted from January 1996 to April 1997.
  
  
  METHODS
  Communication with physician regarding end-of-life issues, completion of an advance directive, preference for aggressiveness of care, and willingness to tolerate future permanent adverse health states.
  
  
  RESULTS
  A total of 1432 patients (50%) discussed some aspect of end-of-life care with their practitioner and 1088 (38%) completed an advance directive. Patients were more likely to complete an advance directive after a physician discussion (odds ratio [OR], 5.82; 95% confidence interval [CI], 4.50-7.52). Practitioners discussed end-of-life care less with blacks (OR, 0.57; 95% CI, 0.39-0.83) and Latinos (OR, 0.74; 95% CI, 0.55-0.98) than with whites. Women (OR, 1.39; 95% CI, 1.05-1.84) and patients with children in the household (OR, 1.53; 95% CI, 1.12-2.10) communicated the most with practitioners about end-of-life issues. Patients infected with HIV via injection drug use (OR, 0.64; 95% CI, 0.45-0.89) and those with less education communicated the least with physicians about end-of-life issues. Less denial, greater trust in one's practitioner, and longer patient-practitioner relationship were associated with more advance care planning.
  
  
  CONCLUSIONS
  Half of all persons infected with HIV are at risk of making end-of-life decisions without prior discussions with their health care practitioners. Blacks, Latinos, intravenous drug users, and less educated individuals need advance care planning interventions in clinical HIV programs.
authors.affiliation: University of California at Los Angeles Department of Medicine, GIM/HSR, 911 Broxton Plaza, Los Angeles, CA 90095-1736, USA. nwenger@mednet.ucla.edu
authors.forename: N S
authors.initials: NS
authors.lastname: Wenger
authors.forename: D E
authors.initials: DE
authors.lastname: Kanouse
authors.forename: R L
authors.initials: RL
authors.lastname: Collins
authors.forename: H
authors.initials: H
authors.lastname: Liu
authors.forename: M A
authors.initials: MA
authors.lastname: Schuster
authors.forename: A L
authors.initials: AL
authors.lastname: Gifford
authors.forename: S A
authors.initials: SA
authors.lastname: Bozzette
authors.forename: M F
authors.initials: MF
authors.lastname: Shapiro
mesh_terms: D000328:Adult; D032722:Advance Care Planning; D016223:Advance Directives; D001293:Attitude to Death; D003430:Cross-Sectional Studies; D003657:Decision Making; D005260:Female; D015658:HIV Infections / Q000523:psychology / Q000628:therapy*; D006801:Humans; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D010358:Patient Participation; D017060:Patient Satisfaction; D010817:Physician-Patient Relations; D012044:Regression Analysis; D013727:Terminal Care / Q000523:psychology; D014481:United States