Practicing solidarity with the sick: Palliative care and the ethics of chronicity

Most individuals in the US and other developed nations die of progressive diseases. These individuals usually live with these diseases for some period before their health care needs are identified in terms of end-of-life care. Across and within progressive diseases that are also chronic diseases, and also with respect to various disabilities, the language of chronicity may be used to mean medical management rather than curative treatment; the experience of living with symptomatic illness; the expectation that a patient will self-manage their health care; the delivery of care outside of the acute-care setting; or a combination of these definitions. While palliative care has long been associated with terminal illness and organized in terms of inpatient consultation or hospice care, individuals who live with some form of chronic illness, such as cancer pain, may benefit from access to palliative care but have difficulty securing it, paying for it, and coordinating it with their other health care needs. Health care systems may offer no clear pathway to access to palliative care for non-hospitalized, non-hospice patients, while professional, personal, and social attitudes and beliefs about the nature of chronic symptoms can impede diagnosis and management.

How we define and describe levels of accountability to chronically ill members of society, and how we use policy to create, or fail to create, structures and conditions that support the delivery of palliative care outside of inpatient and hospice settings, with a focus on cancer pain and symptoms, will be the subject of this paper.