Ethical decision making at the end of life: Recognizing a new right to palliative care

The aims of this presentation are to provide a description of an emerging social ecology of end-of-life decision making, the legal, ethical, social and cultural foundations for such ecological contexts, and the implications for individual, professional, systems and public policy decision making. A major focus of the presentation is explaining the central role and place of palliative care as a therapeutic model of care in meeting the needs of seriously ill individuals over the life course - even at the end of life, in developing population-level strategies for improving public health in communities, and in addressing ethical issues related to allocation of scarce resources including the urgent need for the development of a generalist-level palliative care workforce. Adopting a phenomenological epistemological stance, the author explores the meanings of lived experiences of pain and suffering among seriously ill individuals, advances a social and developmental perspective on suffering, and examines the significance of such meanings for understanding relational autonomy, relational rights, and relational approaches to communication as part of an "ecological turn" to shared informed decision making. The author also discusses conceptual frameworks of ethics that draw upon phenomenological-existential philosophy and psychology and how such frameworks inform praxis for interdisciplinary professionals across the continuum of care both as professionals and members of communities standing in ethical relation to those who are suffering and dying.