The National Palliative Care Research Center

What is Palliative Care?

Palliative care is specialized medical care for people with serious illnesses. It 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 together with a patient's other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

Palliative care is a healthcare specialty that is both a philosophy of care and an organized, highly structured system for delivering care. Multiple studies have demonstrated that palliative care improves health care quality in three domains: the relief of physical and emotional suffering; improvement and strengthening of the process of patient-physician communication and decision-making; and assurance of coordinated continuity of care across multiple healthcare settings – hospital, home, hospice and long-term care.

At the forefront of patient-centered care, palliative care affirms life by supporting the patient and family's goals for the future, including their hopes for cure or life-prolongation, as well as comfort and control.

Comprehensive palliative care services integrate the expertise of a team of providers from different disciplines in order to adequately assess and address the complex needs of seriously ill patients and their families. Members of a palliative care team typically include professionals from medicine, nursing, and social work, with additional support from chaplaincy, nutrition, rehabilitation, pharmacy, and other professional disciplines as needed.

Why is Palliative Care Research Needed?

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.¹

Unlike other areas of medicine, however, 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.  Over the past 8 years, reports from the Institute of Medicine (IOM) in 1997, 2001, and 2003;  the Research Task Force of the American Academy of Hospice and Palliative Medicine (the membership organization of palliative care physicians) in 2003;  and the National Institute of Health's (NIH) State of the Science Conference on End-of-Life Care in 2004 have called for the development of:

1. A cadre of palliative care experts whose numbers and talents are sufficient to organize and conduct biomedical, clinical, behavioral, and health services research for patients with serious and chronic illness, and
2. Research networks and multi-site studies to establish the knowledge base of the field and contribute to the goal of bringing an evidence-based approach to palliative care practice.

The NPCRC is a direct response to these reports and our purpose is to rapidly create the evidence base needed to improve care for seriously ill patients and their families.

¹Morrison RS, Maroney-Galin C, Kralovec PD, Meier DE. The growth of palliative care programs in United States hospitals. J Palliat Med. 2005 Dec;8(6):1127-34.