Palliative and Supportive Care

Original Articles

Advance care planning discussions in advanced cancer: Analysis of dialogues between patients and care planning mediators

Kelly A. Barnesa1, Cate A. Barlowa1, Jane Harringtona1, Karon Ornadela1, Adrian Tookmana1, Michael Kinga2 and Louise Jonesa1 c1

a1 Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, UCL Medical School, Royal Free Campus, London, United Kingdom

a2 Research Department of Mental Health Sciences, UCL Medical School, Royal Free Campus, London, United Kingdom

Abstract

Objective: Advance care planning (ACP) provides patients with an opportunity to consider, discuss, and plan their future care with health professionals. Numerous policy documents recommend that ACP should be available to all with life-limiting illness.

Method: Forty patients with recurrent progressive cancer completed one or more ACP discussions with a trained planning mediator using a standardized topic guide. Fifty-two interviews were transcribed verbatim and analyzed for qualitative thematic content.

Results: Most patients had not spoken extensively to health professionals or close persons about the future. Their concerns related to experiencing distressing symptoms or worrying how family members would cope. Some patients wished for more accurate information and were unaware of their options for care. Many felt it was doctors' responsibility to initiate such discussions, but perceived that their doctors were reluctant to do so. However, some patients felt that the time was not yet right for these conversations.

Significance of results: This article reports on the recorded content of ACP discussions. The extent to which patients want to engage in ACP is variable, and support and training are needed for health professionals to initiate such discussions. Our findings do not fully support the current United Kingdom policy of introducing ACP early in life-threatening disease.

(Received March 30 2009)

(Accepted September 10 2010)

(Online publication February 25 2011)

Correspondence:

c1 Address correspondence and reprint requests to: Louise Jones, Department of Mental Health Sciences, 2nd Floor, UCL Medical School, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, United Kingdom. E-mail: l.jones@medsch.ucl.ac.uk