Key challenges and ways forward in researching the "good death": qualitative in-depth interview and focus group study.
OBJECTIVE
To understand key challenges in researching end of life issues and identify ways of overcoming these.


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


METHODS
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.
Kendall
Marilyn
M
Primary Palliative Care Research Group, Division of Community Health Sciences: General Practice Section, University of Edinburgh, EH8 9DX. Marilyn.Kendall@ed.ac.uk
Harris
Fiona
F
Boyd
Kirsty
K
Sheikh
Aziz
A
Murray
Scott A
SA
Brown
Duncan
D
Mallinson
Ian
I
Kearney
Nora
N
Worth
Allison
A
D001293:Attitude to Death; D035843:Biomedical Research; D004644:Emotions; D020793:Gatekeeping; D006801:Humans; D007258:Informed Consent; D010358:Patient Participation; D013727:Terminal Care / Q000458:organization & administration / Q000592:standards*; D019452:Terminally Ill; D013795:Thanatology