Abstract
Dear Editor:
As readers of JPM know, the field of palliative care has evolved and expanded rapidly over the past few decades. Yet still, most patients, families and, indeed, many clinicians, remain unaware of or misinformed about the scope of palliative care and its services. The Center to Advance Palliative Care has assisted by providing a field tested definition:
“Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”
This definition highlights that in order to reach patients who may benefit from palliative care, we must focus on those with “serious illness” as opposed to those recognized as near the end of life. The latter approach relies on prognostication, which is frequently inaccurate, and much treatable suffering occurs beyond the bounds of the end of life.
Yet a major challenge remains. There is no consensus on the meaning of “serious illness” and therefore which populations of patients may be appropriate for palliative care. Palliative care research is limited by study populations that cannot be compared, and lack of a definition also impedes policy and health care service design.
This problem was highlighted at the 2013 National Palliative Care Research Center (NPCRC) research retreat. We queried the NPCRC community of palliative care researchers and interdisciplinary experts in the clinical, research, and policy arenas of palliative care:
“The National Palliative Care Research Center is committed to stimulating, developing, and funding research directed at improving care for seriously ill patients and their families. Yet no unifying definition of “serious illness” exists. Please take a few moments to let us know how you would define or identify people with serious illness for research and/or clinical programs.”
Anonymous responses were collected and reviewed for themes. Three key themes emerged. First, a serious illness is one that carries a high risk of death over the course of a year, but cure may remain a possibility, such as a person awaiting liver transplant. Second, a serious illness has a strong negative impact on one's quality of life and functioning in life roles, independent of its impact on mortality. Third, a serious illness is highly burdensome to a person and his or her family. This may be experienced as physical or psychological symptoms; time and activities dominated by the illness's treatment; and/or the physical, emotional, and financial stress on caregivers and family.
Based upon these comments, the following conceptual definition has emerged: “Serious illness” is a condition that carries a high risk of mortality, negatively impacts quality of life and daily function, and/or is burdensome in symptoms, treatments, or caregiver stress. Further research is needed to operationalize this definition and investigate its association with outcomes, including mortality and healthcare utilization. Once specified and validated, a uniform definition of serious illness will help to identify those patients who may benefit most from palliative care services.