lack of appropriate training, and a lack of research leadership, with no sustained programs for developing and disseminating palliative treatments. Despite the enormous health care expenditures for the dying, less than 1 percent of the National Cancer Institute (NCI) budget is spent on any aspect of symptom control, palliative care, or end-of-life research or training.

WHAT IS PALLIATIVE CARE?

The World Health Organization (WHO) defines palliative care in cancer as the “active total care of patients whose disease is not responsive to curative treatment.” The definition is extended in an important way with the statement, “Many aspects of palliative care are also applicable earlier in the course of the illness, in conjunction with anticancer treatment” (WHO, 1990). Palliative care focuses on addressing the control of pain and other symptoms, as well as psychological, social, and spiritual distress. In its recommendation to member governments, WHO states that any national cancer control program should address the needs of its citizens for palliative care. This National Cancer Policy Board report adopts the WHO definition and position, focusing on the importance of palliative care beginning at the time of a cancer diagnosis and increasing in amount and intensity throughout the course of a patient’s illness, until death.

In a practical sense, 6 major skill sets comprise complete palliative care:

  1. communication,

  2. decisionmaking,

  3. management of complications of treatment and the disease,

  4. symptom control,

  5. psychosocial care of patient and family, and

  6. care of the dying.

Some of these skills—communication, decisionmaking, psychosocial care of patient and family—are important throughout the trajectory of illness. Others emerge and recede in importance at different times. Treatment and prevention of complications caused by primary cancer treatments are generally episodic, though some require long-term management. Disease complications may require a variety of interventions (including surgery and radiation) that, for many, do not fit neatly into a palliative care definition. The need for symptom control unrelated to treatment generally increases as a person approaches death, but at least for some patients, it begins much earlier. Symptom control is never, however, a substitute for primary cancer care that is desired by a patient.



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