Advance care planning for cancer patients: A systematic review of perceptions and experiences of patients, families and healthcare providers

Abstract

Background Patients with advanced cancer may benefit from end of life (EOL) planning, but there is evidence that their willingness and desire to engage in advance care planning (ACP) varies. The reasons for this remain poorly understood. Previous reviews on ACP most commonly report outcome measures related to medical interventions and type of care. Synthesis of the literature, which aims to illuminate the salient characteristics of ACP and investigates the psychological and social features of preparation for the EOL, is required. Methods We searched Medline, EMBASE, PsychINFO, CINAHL, and the Cochrane Central Register of Controlled Trials for studies on perceptions or experiences regarding ACP of adults with cancer, family, friends, or professionals caring for this group. Databases were searched from earliest records to 19 November 2014. A thematic analysis of the literature generated conceptual themes. Results Of the 2483 studies identified, 40 were eligible for inclusion. Studies addressed the relational nature of ACP, fear surrounding ACP, the conceptual complexity of autonomy, and the influence of institutional culture and previous healthcare experiences on ACP. Conclusions The complex social and emotional environments within which EOL planning is initiated and actioned are not sufficiently embedded within standardized ACP. The notion that ACP is concerned principally with the ‘right’ to self-determination through control over treatment choices at the EOL may misrepresent the way that ACP actually occurs in cancer care and ultimately conflict with the deeper concerns and needs of patients, who experience ACP as relational, emotional, and social.