A tolling bell for public health: Palliative care as a civic practice

Approximately 2.5 million people die in the US each year. Despite recent gains in hospice and palliative care, there is still an epidemic of bad dying. Far too many die with inadequately controlled pain and suffering. Far too many experience a dying marked by fear, anxiety, loneliness, and isolation. Such dying effaces dignity and denies autonomy. The health and ethical harms of bad dying extend to families and loved ones. This paper argues that bad dying is a population and a systemic problem that requires a response drawing upon the knowledge base and practice expertise of public health. No matter how narrowly or broadly one defines the mission of public health and the concept of “health,” surely the relief of suffering and the preservation of human dignity are central to that mission. Poor care of the dying is not a private or a clinical issue alone. The paper also argues that a key part of an adequate public health response and orientation to bad dying is to understand and organize palliative care as what I will call a “civic practice” rather than simply as a clinical specialty. This argument places palliative care in the conceptual framework of the social determinants of health and community empowerment. I will illustrate the notion of palliative care (care of the dying) as a civic practice with a case study of the Missoula, Montana Demonstration Project active in the 1990s—a community capacity building project on end of life care.