Aims: To systematically identify and review quantitative and qualitative studies which explore patient, caregiver and healthcare professionals experiences and perceptions of advance care planning (ACP) in cancer patients.
Methods: Data sources included Medline, EMBASE, PsychINFO, and Cochrane Central Register of Controlled Trials (1950 to October 2013), plus citation and author searches. All studies that described original data on perceptions or experiences of adults with cancer, family, friends or professionals caring for this group regarding ACP were included. A narrative synthesis was conducted following The Economic and Social Research Council’s (ESRC) Methods Programme “Guidance on the Conduct of Narrative Synthesis in Systematic Reviews”.
Results: Of the 2015 titles identified, 37 studies were included (18 quantitative, 14 qualitative, 5 mixed methods). Five conceptual themes were identified: advance care planning is relational (family as a motivator or barrier, the therapeutic relationship); ACP provokes fear and distress (timing, information giving, initiation, setting); stakeholder views regarding ACP vary (physicians as gatekeepers, patient, carer and health professional’s views); institutional culture is influential in ACP; knowledge and understanding of ACP is a motivator or barrier.
Conclusion: The complex social, intersubjective and institutional nature of ACP requires analysis of how all stakeholders approach ACP. We suggest that future research should include in-depth analysis of the social and cultural systems within which ACP is embedded. Examination of the philosophical foundations of ACP and the organisational influence of the healthcare setting on the implementation and efficacy of ACP may improve the understanding and utility of this complex process
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