Why research palliative, supportive, and end-of-life care?

Currow, D.C. and Preston, N. (2025) Why research palliative, supportive, and end-of-life care? In: Research Methods in Palliative, Supportive, and End-of-Life Care :. Oxford University Press (OUP), Oxford. ISBN 9780192898203

Abstract

It is crucial that clinical practice and public policy in palliative care are based upon the most robust research. In palliative care, the benefits of interventions offered have been systematically overestimated, and their harms underestimated. High-quality evidence is needed that directly informs practice by understanding how patients and carers experience palliative care and how best to respond to their feedback. Every research methodology that has been used in social and health sciences can be applied to palliative and supportive care, and to end-of-life research-from laboratory studies to whole-of-population research. Quantitative and qualitative methodologies should complement each other, ideally in high-quality mixed methods approaches. Patients' voices should be given privilege, whenever possible, and there must be a systematic understanding of the experiences and consequences of caregiving. Community attitudes to dying and death are also crucial to understand as they evolve. Evaluation of models of care and of the impact of new interventions is a key area of inquiry in palliative and end-of-life care. Existing (big) data have already contributed to improved palliative and end-of-life care. Likewise, the availability of genetic data at reasonable cost will lead to changes in expectations from patients and their families. The advent of accessible artificial intelligence opens another way of working to understand better care that is offered and inform ways to improve care. Knowledge from other clinical disciplines may allow direct extrapolation to palliative or supportive care or be the basis of hypothesis-generating studies to inform future research.