Time, distress and the social good of palliative medicine research participation

Abstract

Research involving patients is often subject to demanding ethical review processes to protect research participants and prevent harm or fraud. While having a robust ethical approval process is necessary, in practice, within palliative care contexts, the ethical issues and challenges raised (eg, gatekeeping) can often be detrimental to the research and, ultimately, people in need of high-quality care. We draw on evidence from our own research and others to challenge one-time-suits-all approaches to 'protect the vulnerable' in research, which, we argue, makes people in end-of-life contexts more vulnerable as their voices are at risk of being excluded.

Keywords: Communication; End of life care; Ethics; Methodological research; Palliative Care.