Discrepant perceptions about end-of-life communication: a systematic review

Abstract

Little research has compared the perceptions of health professionals (HPs), patients, and caregivers about the communication of prognostic information. The objectives of this literature review were to determine 1) patient and caregiver perceptions of levels of information received about prognosis and end-of-life (EoL) issues regarding a life-limiting illness; 2) patient perceptions of and factors related to their understanding and awareness of prognosis; 3) HPs' perceptions of patients' wishes about disclosure of prognosis and factors related to their decision whether to disclose; and 4) concordance between HPs and patients/caregivers regarding the information given by HPs about prognostic and EoL issues. Relevant studies meeting the inclusion criteria were identified by searching computerized databases (MEDLINE, EMBASE, CINAHL, PsychINFO, Cochrane Register of Controlled Trials [Central]) up to November 2004. The reference lists of identified studies were hand searched for further relevant studies. Inclusion criteria were studies of any design evaluating communication of prognostic information that included adult patients with an advanced, life-limiting illness; their caregivers; and qualified HPs. Fifty-one studies were identified. There was a large discrepancy between patients/caregivers and HPs regarding the amount of information they believed had been given. Patients' understanding and awareness of information received conflicted with the HPs' perceptions of patients' understanding and awareness of the information that had been given. HPs tended to underestimate patients' need for information and overestimate patients' understanding and awareness of their prognosis and EoL issues. HPs need to repeatedly check patients' understanding and preferences for information.