Review Article
A Systematic Review of Prognostic/End-of-Life Communication with Adults in the Advanced Stages of a Life-Limiting Illness: Patient/Caregiver Preferences for the Content, Style, and Timing of Information

https://doi.org/10.1016/j.jpainsymman.2006.09.035Get rights and content
Under an Elsevier user license
open archive

Abstract

Evidence-based recommendations concerning how to discuss dying, life expectancy, and likely future symptoms with patients with a limited life expectancy and their families are lacking. The aim of this systematic review was to review studies regarding prognostic/end-of-life communication with adult patients in the advanced stages of a life-limiting illness and their caregivers. Relevant studies meeting the inclusion criteria were identified by searching computerized databases up to November 2004. One hundred twenty-three studies met the criteria for the full review, and 46 articles reported on patient/caregiver preferences for content, style, and timing of information. The majority of the research was descriptive. Although there were individual differences, patients/caregivers in general had high levels of information need at all stages of the disease process regarding the illness itself, likely future symptoms and their management, and life expectancy and information about clinical treatment options. Patient and caregiver information needs showed a tendency to diverge as the illness progressed, with caregivers needing more and patients wanting less information. Patients and caregivers preferred a trusted health professional who showed empathy and honesty, encouraged questions, and clarified each individual's information needs and level of understanding. In general, most patients/caregivers wanted at least some discussion of these topics at the time of diagnosis of an advanced, progressive, life-limiting illness, or shortly after. However, they wanted to negotiate the content and extent of this information.

Key Words

Systematic review
patient preferences
caregiver preferences
terminally ill
palliative care
communication
prognosis
end-of-life issues, patient-physician relations

Cited by (0)

This project was supported by a Strategic Research Grant from the Australian National Health and Medical Research Council. Dr. Clayton is supported by a Cancer Institute NSW Clinical Research Fellowship.

This paper contains results from a larger review, “Communicating Prognosis and Issues Surrounding End-of-Life in Adults in the Advanced Stages of a Life-Limiting Illness: A Systematic Review.” November 2006. Available at http://www.ctc.usyd.edu.au/research/publications/articles_2006.htm.