title: Communicating prognostic uncertainty in potential end-of-life contexts: experiences of family members.
abstract: BACKGROUND
  This article reports on the concept of "communicating prognostic uncertainty" which emerged from a mixed methods survey asking family members to rank their satisfaction in seven domains of hospital end-of-life care.
  
  
  METHODS
  Open-ended questions were embedded within a previously validated survey asking family members about satisfaction with end-of-life care. The purpose was to understand, in the participants' own words, the connection between their numerical rankings of satisfaction and the experience of care.
  
  
  RESULTS
  Our study found that nearly half of all family members wanted more information about possible outcomes of care, including knowledge that the patient was "sick enough to die". Prognostic uncertainty was often poorly communicated, if at all. Inappropriate techniques included information being cloaked in confusing euphemisms, providing unwanted false hope, and incongruence between message and the aggressive level of care being provided. In extreme cases, these techniques left a legacy of uncertainty and suspicion. Family members expressed an awareness of both the challenges and benefits of communicating prognostic uncertainty. Most importantly, respondents who acknowledged that they would have resisted (or did) knowing that the patient was sick enough to die also expressed a retrospective understanding that they would have liked, and benefitted, from more prognostic information that death was a possible or probable outcome of the patient's admission. Family members who reported discussion of prognostic uncertainty also reported high levels of effective communication and satisfaction with care. They also reported long-term benefits of knowing the patient was sick enough to die.
  
  
  CONCLUSIONS
  While a patient who is sick enough to die may survive to discharge, foretelling with family members in potential end of life contexts facilitates the development of a shared and desired prognostic awareness that the patient is nearing end of life.
authors.affiliation: Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital, 588 - 1081 Burrard Street, Vancouver, BC, V6Z 1Y6, Canada. mrnkrawczyk@gmail.com.
authors.forename: Marian
authors.identifier: http://orcid.org/0000-0002-8830-6236
authors.initials: M
authors.lastname: Krawczyk
authors.affiliation: Division of Palliative Care, UBC, Department of Family and Community Medicine, Providence Health Care, 1081 Burrard St., Vancouver, BC, V6Z 1Y6, Canada.
authors.forename: Romayne
authors.initials: R
authors.lastname: Gallagher
mesh_terms: D000368:Aged; D001364:Awareness; D003142:Communication; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010549:Personal Satisfaction; D011379:Prognosis; D013727:Terminal Care / Q000523:psychology*; D035501:Uncertainty
keywords: Communication; End of life; Family members; Prognostic uncertainty