Participation in research for patients with palliative care needs

Addington-Hall, 2002Casarett, 2000Oriani, 2021

Participation in a clinical trial may have benefits for a patient and their family (eg access to newer treatments, improved symptom management); some patients unlikely to benefit may wish to participate for altruistic reasonsWhite, 2010White, 2008. Similarly, parents of children with life-limiting illnesses and adolescents may also wish to be involved in research. Clinicians should be careful not to create unnecessary barriers to participation in research if the patient or family wish to participateLeBlanc, 2013.

Patients who do not wish to be involved in clinical trials may fear being abandoned by their treating team; they should be reassured that this will not happen.