Defining the palliative care patient: A systematic review

Abstract

Background: The lack of a clear definition of the palliative care patient hampers the comparison of results across different studies and impedes implementation of research findings in everyday practice. Aim: The aim of this article is to propose minimum characteristics that define a palliative care patient. Design: The design involved a systematic review of medical literature searching randomised controlled trials (RCTs) in palliative care for clear descriptions of their palliative care patients. We systematically describe relevant characteristics of the study populations of 60 eligible RCTs. Data sources: The data sources used were MEDLINE, EMBASE, CINAHL, and PSYCHINFO, including all non-cancer RCTs (1 January 1995–4 March 2010) and an equivalent number of the most recent cancer RCTs (1 January 2003–4 March 2010). Results: Half of the non-cancer studies were excluded because they did not relate to palliative care. We conclude that published RCTs have no clear definitions of their palliative care patients and illustrate the diversity of this patient, the lack of consensus concerning the attributes of illnesses needing palliation and the ambiguous use of the adjective ‘palliative’. Conclusions: We propose elements of the patients’ health status (e.g. a progressive, life-threatening disease with no possibility of obtaining remission or stabilisation, or modifying the course of the illness) and the care delivered to them (e.g. a holistic interdisciplinary approach that focuses on supporting the quality of the end of life) to be included in the definition of a palliative care patient. We also suggest considering the patients’ readiness to accept palliative care and a vision of palliative care shared by the patient and all caregivers involved as potentially important elements in this definition.