'It's my pleasure?': the views of palliative care patients about being asked to participate in research

Abstract

Background There is a paucity of studies which explore palliative care patients’ involvement in research. The involvement of patients with a life-limiting illness in research raises numerous ethical concerns for researchers keen to take account of their views and experiences of service provision. Assumptions are readily made about whether participation is appropriate for this patient group due to their perceived vulnerability. Aim To explore the views of hospice users regarding their motivations for taking part in a study, designed to inform the delivery of care, and ensure ongoing service improvement. Methods Based on a larger pilot study to examine patients’ satisfaction with hospice care, and using a qualitative interview approach, twenty-one patients under the care of three hospices in the Auckland region of New Zealand took part. Interviews were recorded and transcribed verbatim. Data were analysed using a thematic analysis technique. Results The involvement of hospice users in research is important and has the capacity to produce a diverse, but significant impact on those involved. Not only does their involvement demonstrate the potential to shape service provision, it also reveals the therapeutic benefits to individuals with a life-limiting illness of simply taking part. Of particular importance is the view that participation enables a sense of personhood to be maintained circumventing the potential of a ‘social death’. Unless they are unable to consent, palliative care patients should be regarded as autonomous individuals and given the opportunity to participate in research.