Assessing palliative care is difficultBMJ 2000; 320 doi: https://doi.org/10.1136/bmj.320.7239.942 (Published 01 April 2000) Cite this as: BMJ 2000;320:942
- Chris Salisbury, consultant senior lecturer (, )
- Nick Bosanquet, professor of health policy
- Division of Primary Health Care, University of Bristol, Bristol BS8 2PR
- Department of Primary Health Care, Imperial College School of Medicine, London W2 1PG
EDITOR—Keeley rehearses the problems of recruitment, attrition, data collection, and ethical concerns which make research on palliative care so difficult.1 We recently conducted a comprehensive systematic review of the evidence for the effectiveness of different models of palliative care, commissioned by the NHS Executive.2–4
Our team reviewed more than 800 papers, but despite this volume of literature it was difficult to reach clear conclusions about any of the questions we considered. In addition to those listed by Keeley there are problems in the use of inappropriate outcome measures, the unreliability of using carers as proxies to provide assessments, the heterogeneity of patients receiving palliative care, rapid fluctuations in patients' conditions, and the difficulty of generalising from local evaluations when other local support services vary so widely. These problems should now be familiar to, and anticipated by, researchers and funding bodies. Small scale, underfunded, and underpowered randomised controlled trials can no longer be supported. Well conducted observational studies, qualitative research, and a careful description of the process of care and the context may provide more useful information for evaluating local services.
At the national level, however, it would be possible to conduct a large scale trial of palliative home care teams. This would need to include several sites, with patients randomised by practice or by district.5 Although such a study would be expensive to mount, it would be a better investment than many small, inconclusive studies. It would also be fully justified in the light of the considerable national investment in different models of palliative care services, when evidence of effectiveness is lacking.