title: 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.
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.
authors.affiliation: National Health and Medical Research Council Clinical Trials Centre, University of Sydney, Camperdown, New South Wales, Australia.
authors.forename: Sharon M
authors.initials: SM
authors.lastname: Parker
authors.forename: Josephine M
authors.initials: JM
authors.lastname: Clayton
authors.forename: Karen
authors.initials: K
authors.lastname: Hancock
authors.forename: Sharon
authors.initials: S
authors.lastname: Walder
authors.forename: Phyllis N
authors.initials: PN
authors.lastname: Butow
authors.forename: Sue
authors.initials: S
authors.lastname: Carrick
authors.forename: David
authors.initials: D
authors.lastname: Currow
authors.forename: Davina
authors.initials: D
authors.lastname: Ghersi
authors.forename: Paul
authors.initials: P
authors.lastname: Glare
authors.forename: Rebecca
authors.initials: R
authors.lastname: Hagerty
authors.forename: Martin H N
authors.initials: MH
authors.lastname: Tattersall
mesh_terms: D000328:Adult; D001293:Attitude to Death; D003142:Communication; D006801:Humans; D010166:Palliative Care / Q000523:psychology; D010817:Physician-Patient Relations; D011379:Prognosis; D013727:Terminal Care / Q000523:psychology*; D019452:Terminally Ill / Q000523:psychology*