Best practices in research methods: palliative care research in practice

From an initial focus on the care of people in the last weeks or days of life, the principles and practice of palliative care have been increasingly recognized as beneficial for people earlier in their disease trajectory, from the point of diagnosis (Ahmedzai & Walsh, 2000; World Health Organization, 2005). Yet the reality is that the majority of patients receiving care from hospice and specialist palliative services are in the last months, weeks, or days of life (Eve, Smith, & Tebbit, 1997; Lamont & Christakis, 2002). In addition, although the relevance of palliative care to people who die from conditions other than cancer is increasingly recognized (Addington-Hall & Higginson, 2001), the majority of patients currently receiving care in most settings have cancer, with most of the remainder having AIDS or neurological conditions such as motor neurone disease. This article focuses on the challenges of working as a researcher with people with advanced, progressive disease who are coming to the end of their lives. Our empathy with and compassion for our fellow human beings facing the end of their lives can cause us to find the idea of palliative care research rather unsettling, and to even question whether it is an appropriate pursuit. To address this satisfactorily we need, I think, a clear sense of the potential benefits of research in this area, the risks of not doing such research, and the ethical dimensions of such research