Variation in state policy on end-of-life care: Hospice policy and decision making – balancing fidelity to hospice ethics of care, patient autonomy, and interpretations of meaning in experiences of serious illness and dying

The history of hospice care is such that it is caught in the quandary of being artificially constrained at the federal level by virtue of the 6-month patient certification requirement imposed by the Medicare Hospice Benefit, yet also constrained by state policies that may create challenging ethical dilemmas. There is good evidence of the impacts of federal constraints in restricting access to hospice care, namely, more aggressive care at the end of life and unnecessary prolongation of suffering. However, the consequences of state policies are not well understood. Little research has been done evaluating the impact of state policies on intended beneficiaries of care, and in particular on end-of-life care options and end-of-life decision making.

The goal of this presentation is to examine variation in state policies and policy implementation in end-of-life care, and the impact of state policies on hospice design, policy and decision making. The researcher will explore three areas drawing upon administrative data and research findings from a qualitative study of end-of-life decision making: pain care; palliative and terminal sedation; and hastening death. Analysis will focus on hospice decision making in negotiating ethical conflict in the context of the foundational relationship between law and ethics. Factors that will be weighed in the analysis are balancing fidelity to hospice ethics of care and principles of non-abandonment of the patient, patient autonomy and shared decision making models and practices, and interpretations of meaning in experiences of serious illness and dying by and among patients, families, caregivers, staff and communities.