By 2030, 20 percent of the United State's population will be over age 65. For most, the years after age 65 are a time of good health, independence, and integration of a life's work and experience. Eventually, most adults will develop one or more chronic illnesses with which they will live for years before death. These years are characterized by physical and psychological symptom distress; progressive functional dependence and frailty; and high family support needs. Recent studies suggest that medical care for patients with advanced illness is characterized by inadequately treated physical distress; fragmented care systems; poor communication between doctors, patients, and families; and enormous strains on family caregiver and support systems.
Palliative care focuses on relieving suffering and achieving the best possible quality of life for patients and their caregivers. The development of the specialty of palliative medicine has been a critical step in addressing the unmet needs of patients with serious illness and their families and the growth of this field has been remarkable. From 2001-2003, the number of hospital based palliative care programs has grown by over 60% such that now one in 4 U.S. hospitals has a palliative care program and all U.S. medical schools must provide training in palliative medicine.
Compared with other fields, palliative care suffers from a relative dearth of high quality evidence on which to make treatment decisions. The knowledge base to support the basic elements of palliative care clinical practice (i.e., pain and symptom management, communication skills, care coordination) is small and inadequate and systems of care that truly support the needs of patients and families have yet to be developed. Many studies have characterized serious challenges in care for individuals with serious advanced illness, including:
- problems with the accessibility of hospice and similar services;
- inadequate management of pain and other symptoms;
- existential and spiritual distress;
- caregiver burden;
- poor care coordination;
- mismatch of care with patient preferences; and
- inappropriate resource use.
PoPCRN was formed as a means for conducting on-going studies of care at the end of life. Specifically, our aim is to facilitate structured and rigorous exploration of issues of importance to patients, families, caregivers, and providers in palliative care and hospice settings, contributing to an evidence base from which treatment decisions can be made.