3: Ongoing dilemmas and new approaches in palliative care and end of life care research: methods, ethics, and patient and public involvement in the United Kingdom

In this chapter we outline some of the key debates related to methods, ethics, and patient and public involvement in palliative and end of life care (PEoLC) research. With a focus on experiences in the United Kingdom, we reflect on the challenges of how we define and recognise PEoLC needs, and the implications of this for research. Trends and patterns in PEoLC research over recent years are outlined, and methodological challenges are discussed. Ethical issues are at the forefront of PEoLC research, and these are considered alongside the value of patient and public involvement in addressing ethical and methodological concerns. Interdisciplinary and participatory methods underpin effective research that allows us to understand what is happening, why, and in what circumstances, in order to inform future practice and policy. Further research must address how we cross disciplinary and institutional boundaries and break down the barriers to doing so.