Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life : 8.1 What Is Palliative Care?

Palliative care, sometimes described as supportive care, means different things to different people. Even among health care professionals, there is not always consensus on what palliative care is or should be. Some clinicians question whether and how palliative care differs from hospice care; others wonder what distinguishes palliative care, with its focus on relieving symptoms and comforting patients, from basic, good medical practice.

Most often, palliative care is described as a way to meet the physical, mental, and spiritual needs of chronically ill and dying patients. The philosophy underlying palliative care, however, is not unique to any disease or illness. In fact, some claim that palliative care describes the kind of relief from suffering all patients need. But with its attention to relieving symptoms and meeting patient goals, palliative care is certainly an approach from which those near the end of life most benefit.

The World Health Organization defines palliative care as: “the active total care of patients whose disease is not responsive to curative treatment . . . [when] control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount.”

Clinicians tend to associate palliative care with oncology and believe that palliative care is what is given when aggressive, curative treatment no longer works. Many clinicians believe there is a demarcation line between when cure-oriented care ends and palliative care begins; others believe the transition is far more gradual and less clear-cut. Clinicians may believe that palliative care requires patients to forgo other treatments, such as radiation or chemotherapy. Although this is indeed the case with some traditional hospice programs, palliative care need have no such requirement.

Andrew Billings, MD (1998), director of the Palliative Care Service at Massachusetts General, describes palliative care as "comprehensive care, provided by an interdisciplinary team, for patients and families living with a life-threatening or terminal illness, particularly where care is focused on alleviating suffering and promoting quality of life." He adds, "Major concerns are pain and symptom management, information sharing and advance care planning, psychosocial and spiritual support, and coordination of care, including arranging for excellent services in the community."

Goals of Palliative Care Services
  • Assure that patients and families receive excellent pain control and other comfort measures
  • Give patients the information needed to participate in decisions about care
  • Offer emotional and spiritual support and practical assistance
  • Obtain expert help in planning care outside the hospital
  • Continue to received good services in the community (Billings, 1998)

What’s In A Name?

If defining palliative care itself is a difficult task, naming a program can seem almost impossible. One children’s cancer program tried to deal with a charged turf issue by calling its palliative care program the “advanced cancer support program.” The hospital’s oncologists objected, asking if their work was “just basic cancer support.” The group then tried to describe it as a comfort unit—and met with more objections. Finally, the group settled on palliative care, although most patients and families were not familiar with the term. Other groups have used “extensive” or “advanced illness” to describe their patient population. A few groups are calling their programs MediCaring.

Regardless of what they are called, programs offer patients and families the kind of comprehensive, supportive care so essential to people facing serious and complex diseases.

The Last Acts Palliative Care Task Force has released a booklet called "Precepts of Palliative Care," which can be integrated into end-of-life programs and services. The precepts (included in the Resources section on page 327 at the back of this book) focus on respecting patient goals, preferences, and choices; providing comprehensive care; using interdisciplinary resources; addressing the concerns of family and caregivers; and building systems and mechanisms that support palliative care programs, as well as research and evaluation of them.

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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.

For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].

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