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

Marilyn Kendall, Fiona Harris, Kirsty Boyd, Aziz Sheikh, Scott A. Murray, Duncan Brown, Ian Mallinson, Nora Kearney, Allison Worth

    Research output: Contribution to journalArticlepeer-review

    77 Citations (Scopus)

    Abstract

    Objective To understand key challenges in researching end of life issues and identify ways of overcoming these. 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
    Original languageEnglish
    Pages (from-to)1-6
    Number of pages6
    JournalBMJ
    Volume334
    Issue number7592
    DOIs
    Publication statusPublished - 2007

    Keywords

    • Patient centred death
    • Death and dying
    • End of life care

    Fingerprint Dive into the research topics of 'Key challenges and ways forward in researching the "good death": qualitative in-depth interview and focus group study'. Together they form a unique fingerprint.

    Cite this