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

Sourcebook : Improving Care for the End of Life : 12.5 Advocate for Health Services and Basic Research on End-of-Life Issues

Many federal agencies, primarily the National Institutes of Health (NIH), the Agency for Healthcare Research and Quality (AHRQ), and the Health Care Financing Administration (HCFA), influence health care delivery, either by directing state-of-the-art treatment and research or by funding services. These organizations can be pushed to use resources to fund new research on relieving symptoms at the end of life, developing guidelines, and monitoring effectiveness. Health care services research can provide educational resources and revised approaches to health care delivery. Studies that determine how differences in costs and outcomes are related to problems in clinical care can point to directions for improving care.

The Institute of Medicine report Approaching Death suggests many avenues for study. Its recommendations can serve as a guide to those interested in conducting research or in advocating for increased research funding:

  1. People with advanced, potentially fatal illnesses and those close to them should be able to expect and receive reliable, skillful, and supportive care.
  2. Physicians, nurses, social workers, and other health professionals must commit themselves to improving care for dying patients and to using existing knowledge effectively to prevent and relieve pain and other symptoms.
  3. Because many problems in care stem from system problems, policymakers, consumer groups, and purchasers of health care should work with health care practitioners, organizations, and researchers to:
  4. Educators and other health care professionals should initiate changes in undergraduate, graduate, and continuing education to ensure that practitioners have the appropriate attitudes, knowledge, and skills to care well for dying patients.
  5. Palliative care should become, if not a medical specialty, at least a defined area of expertise, education, and research.
  6. The nation's research establishment should define and implement priorities for strengthening the knowledge base for end-of-life care.
  7. A continuing public discussion is essential to develop a better understanding of the modern experience of dying, the options available to patients and families, and the obligations of communities to those approaching death.

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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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