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BMJ 2007;334:521 (10 March), doi:10.1136/bmj.39097.582639.55 (published 28 February 2007)
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
Design Qualitative study involving in-depth interviews with researchers and focus groups with people affected by cancer.
Participants An international sample of 32 researchers; seven patients with experience of cancer; and four carers in south east Scotland.
Results Researchers highlighted the difficulty of defining the end of life, overprotective gatekeeping by ethics committees and clinical staff, the need to factor in high attrition rates associated with deterioration or death, and managing the emotions of participants and research staff. People affected by cancer and researchers suggested that many people nearing the end of life do want to be offered the chance to participate in research, provided it is conducted sensitively. Although such research can be demanding, most researchers believed it to be no more problematic than many other areas of research and that the challenges identified can be overcome.
Conclusions The continuing taboos around death and dying act as barriers to the commissioning and conduct of end of life research. Some people facing death, however, may want to participate in research and should be allowed to do so. Ethics committees and clinical staff must balance understandable concern about non-maleficence with the right of people with advanced illness to participate in research. Despite the inherent difficulties, end of life research can be conducted with ethical and methodological rigour. Adequate psychological support must be provided for participants, researchers, and transcribers.
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