Patients with pancreatic cancer and relatives talk about preferred place of death and what influenced their preferences: a qualitative study
- 1Department of Primary Health Care, University of Oxford, Oxford, UK
- 2International Observatory on End of Life Care, Lancaster University, Lancaster, UK
- Correspondence to Alison Chapple, Department of Primary Health Care, University of Oxford, 2nd Floor, 23–38 Hythe Bridge Street, Oxford OX1 2ET, UK;
Contributors AC and JE conducted the interviews. AC and JE analysed the data. AC drafted the paper; AC, JE, SP and AMcP contributed to the subsequent drafts and final version. AC and JE will act as guarantors for the work.
Objective To explore reasons why people with pancreatic cancer, who are reaching the end of their lives, say they wish to die at home or elsewhere, and why preferences may change.
Design Qualitative study using semistructured interviews followed by thematic analysis.
Setting Respondents recruited from different parts of the UK during 2009/2010.
Participants 16 people with experience of pancreatic cancer (8 patients and 8 bereaved relatives) who discussed place of death in detail during an in-depth interview (from a total sample of 32 people with pancreatic cancer and eight relatives of others who had died of this disease).
Results People's preferences were affected by their perceptions and previous experiences of care available at home, in a hospice or hospital. Preferences were also shaped by fears about possible loss of dignity, or fears of becoming a burden. Some people thought that a home death might leave bad memories for other members of the family. People with pancreatic cancer and their relatives were aware that preferences might change (or had changed) as death approached.
Conclusions The National Health Service End of Life Care Strategy for England seeks to meet the needs of people who are dying and promotes better support for home deaths. More information is needed about why patients hold different views about place of care and place of death, why patients' preferences change and what importance patients attach to place of death. Health professionals should bear this in mind if the subject is raised during advance care planning.
Funding The actor Hugh Grant funded the work through the DIPEx charity. The views expressed do not necessarily reflect those of the funder.
Competing interests None.
Provenance and peer review Not commissioned; internally peer reviewed.
Ethics approval Ethics committee approval was given for this study by the Berkshire Research Ethics Committee, 09/H0505/66. All participants gave informed consent before taking part and have given written consent to their interview data being included in publications.
- Accepted 17 July 2011.
- Published Online First 25 August 2011
- Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions