Key challenges and ways forward in researching the "good death": qualitative in-depth interview and focus group study

doi:10.1136/bmj.39097.582639.55

BMJ 2007;334:521 (10 March), doi:10.1136/bmj.39097.582639.55 (published 28 February 2007)

Research

Key challenges and ways forward in researching the "good death": qualitative in-depth interview and focus group study

Marilyn Kendall, research fellow¹, Fiona Harris, research fellow¹, Kirsty Boyd, honorary clinical senior lecturer¹, Aziz Sheikh, professor of primary care research and development¹, Scott A Murray, St Columba's Hospice professor of primary palliative care¹, Duncan Brown, consultant in palliative medicine², Ian Mallinson, patient representative¹, Nora Kearney, professor³, Allison Worth, research fellow¹

¹ Primary Palliative Care Research Group, Division of Community Health Sciences: General Practice Section, University of Edinburgh, EH8 9DX, ² St Columba's Hospice, Edinburgh EH5 3RW, ³ Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling, Stirling FK9 4LA

Correspondence to: M Kendall Marilyn.Kendall{at}ed.ac.uk

Objective To understand key challenges in researching end oflife issues and identify ways of overcoming these.

Design Qualitative study involving in-depth interviews withresearchers and focus groups with people affected by cancer.

Participants An international sample of 32 researchers; sevenpatients with experience of cancer; and four carers in southeast Scotland.

Results Researchers highlighted the difficulty of defining theend of life, overprotective gatekeeping by ethics committeesand clinical staff, the need to factor in high attrition ratesassociated with deterioration or death, and managing the emotionsof participants and research staff. People affected by cancerand researchers suggested that many people nearing the end oflife do want to be offered the chance to participate in research,provided it is conducted sensitively. Although such researchcan be demanding, most researchers believed it to be no moreproblematic than many other areas of research and that the challengesidentified can be overcome.

Conclusions The continuing taboos around death and dying actas barriers to the commissioning and conduct of end of liferesearch. Some people facing death, however, may want to participatein research and should be allowed to do so. Ethics committeesand clinical staff must balance understandable concern aboutnon-maleficence with the right of people with advanced illnessto participate in research. Despite the inherent difficulties,end of life research can be conducted with ethical and methodologicalrigour. Adequate psychological support must be provided forparticipants, researchers, and transcribers.

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