239728 Practicing solidarity with the sick: Palliative care and the ethics of chronicity

Tuesday, November 1, 2011: 9:10 AM

Nancy Berlinger, PhD, MDiv , The Hastings Center, Garrison, NY
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.

Learning Areas:
Chronic disease management and prevention
Ethics, professional and legal requirements
Provision of health care to the public
Public health or related public policy
Systems thinking models (conceptual and theoretical models), applications related to public health

Learning Objectives:
Describe the concept of chronicity as it is used with respect to chronic disease, chronic illness, and/or chronic-care settings. Discuss the palliative care needs of individuals who live with chronic illness and the barriers to meeting these needs outside of inpatient or hospice settings, with particular reference to cancer care. Analyze the levels of social accountability required to integrate palliative care into chronic-care systems.

Keywords: Chronic Illness, Ethics

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am a scholar and nursing educator whose research and teaching focuses on ethical issues in health care systems, with particular reference to cancer care, palliative care, and end-of-life care.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.