title: Communication between physicians and family caregivers about care at the end of life: when do discussions occur and what is said?
abstract: BACKGROUND
  Few studies have examined physician-family caregiver communication at the end of life, despite the important role families have in end-of-life care decisions. We examined family caregiver reports of physician communication about incurable illness, life expectancy, and hospice; the timing of these discussions; and subsequent family understanding of these issues.
  
  
  METHODS
  Mixed methods study using a closed-ended survey of 206 family caregivers and open-ended, in-depth interviews with 12 additional family caregivers.
  
  
  METHODS
  Two hundred eighteen primary family caregivers of patients with cancer enrolled with hospice between October 1999 and June 2002.
  
  
  METHODS
  Family caregiver reports provided at the time of hospice enrollment of physician discussions of incurable illness, life expectancy, and hospice.
  
  
  RESULTS
  Many family caregivers reported that a physician never told them the patient's illness could not be cured (20.8%), never provided life expectancy (40% of those reportedly told illness was incurable), and never discussed using hospice (32.2%). Caregivers reported the first discussion of the illness being incurable and of hospice as a possibility occurred within 1 month of the patient's death in many cases (23.5% and 41.1%, respectively). In open-ended interviews, however, family caregivers expressed ambivalence about what they wanted to know, and their difficulty comprehending and accepting "bad news" was apparent in both qualitative and quantitative data.
  
  
  CONCLUSIONS
  Our findings suggest that ineffective communication about end-of-life issues likely results from both physician's lack of discussion and family caregiver's difficulty hearing the news. Future studies should examine strategies for optimal physician-family caregiver communication about incurable illness, so that families and patients can begin the physical, emotional, and spiritual work that can lead to acceptance of the irreversible condition.
authors.affiliation: Department of Epidemiology and Public Health, Yale School of Medicine, New Haven, Connecticut 06520-8034, USA.
authors.forename: Emily
authors.initials: E
authors.lastname: Cherlin
authors.forename: Terri
authors.initials: T
authors.lastname: Fried
authors.forename: Holly G
authors.initials: HG
authors.lastname: Prigerson
authors.forename: Dena
authors.initials: D
authors.lastname: Schulman-Green
authors.forename: Rosemary
authors.initials: R
authors.lastname: Johnson-Hurzeler
authors.forename: Elizabeth H
authors.initials: EH
authors.lastname: Bradley
mesh_terms: D017028:Caregivers; D003142:Communication; D003237:Connecticut; D003625:Data Collection; D005260:Female; D006801:Humans; D007398:Interpersonal Relations; D008875:Middle Aged; D010166:Palliative Care; D010820:Physicians; D013727:Terminal Care; D019452:Terminally Ill