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

Published online by Cambridge University Press:  25 February 2011

Kelly A. Barnes ,
Cate A. Barlow ,
Jane Harrington ,
Karon Ornadel ,
Adrian Tookman ,
Michael King  and
Louise Jones
Kelly A. Barnes
Affiliation:
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, UCL Medical School, Royal Free Campus, London, United Kingdom
Cate A. Barlow
Affiliation:
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, UCL Medical School, Royal Free Campus, London, United Kingdom
Jane Harrington
Affiliation:
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, UCL Medical School, Royal Free Campus, London, United Kingdom
Karon Ornadel
Affiliation:
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, UCL Medical School, Royal Free Campus, London, United Kingdom
Adrian Tookman
Affiliation:
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, UCL Medical School, Royal Free Campus, London, United Kingdom
Michael King
Affiliation:
Research Department of Mental Health Sciences, UCL Medical School, Royal Free Campus, London, United Kingdom
Louise Jones*
Affiliation:
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, UCL Medical School, Royal Free Campus, London, United Kingdom
*
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
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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.

Keywords

ACPEnd of lifeFuture careAdvance decisionsPalliative careTerminal illness
Type
Original Articles
Information
Palliative & Supportive Care , Volume 9 , Issue 1 , March 2011 , pp. 73 - 79
Copyright
Copyright © Cambridge University Press 2011

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