Clinical research in palliative care: Patient populations, symptoms, interventions and endpoints

Abstract

Clinical trials in palliative care involve multiple issues relating to patient populations, interventions and endpoints. Careful data collection and analysis of variables are vital for good clinical research in this complex area.

What do palliative care patients and their relatives think about research in palliative care?—a systematic review

“…There has been controversy about the appropriateness of involving palliative care patients in research [2,16]. Research to date in the palliative care setting has suggested that patients are interested in participating in research, and may actually benefit from doing so [8,10,17,18].…”

A survey of the views of palliative care healthcare professionals towards referring cancer patients to participate in randomized controlled trials in palliative care

“…There has been controversy amongst HCPs about the appropriateness of involving palliative care patients in research [7,24]. However, where there is a lack of evidence, clinical practice may involve as great a degree of experimentation as a clinical trial [28].…”

“Please, I want to go home”: ethical issues raised when considering choice of place of care in palliative care

“…The opinions of proxies can be useful because they provide data about those who would otherwise be unrepresented 2 8. There will always be a cohort of patients unable to participate in studies, either because of their frailty or because of difficulties gaining consent for participation 9 10. There is also under-representation of the views of those with non-malignant terminal diseases and of other groups who tend not to access specialist palliative care services, including minority ethnic communities 11 – 14…”