The Ethical Framework for End-of-life Care was developed over a three year period (2007-2010) as part of a national programme aimed at improving the culture of care and organization regarding dying, death and bereavement in Irish hospitals. Comprising of eight modules of learning, the Framework is a set of educational resources for health professionals, patients, families and the general public. It is the outcome of collaboration between University College Cork, the Royal College of Surgeons in Ireland and the Irish Hospice Foundation, with contributions from ethicists, legal experts, theologians, sociologists and clinicians.
What makes this project unique is its deliberate and conscious deployment of both empirical and philosophical research methodologies. Stage 1 was informed by extensive national and international empirical research on patients’, families’ and health professionals’ experiences and perspectives of death and dying. Stage 2 drew on a range of ethical and legal values, principles and arguments that have been identified as important considerations in end-of-life decision making in bioethics and in professional codes of conduct, policy documents and laws.
This paper charts the progress of the symbiotic relationship between this empirical and philosophical research from the planning stage of the project through to its final outcome. It critically considers both the advantages and the challenges involved in trying to work with these very different methodological perspectives involving as they do different skill sets, epistemological assumptions and implications for practice. Taking two examples, the principles of ‘patient autonomy’ and ‘truth-telling’, the paper illustrates how findings from the empirical research, for better or worse, prompted a radical reframing of these notions within the Framework.