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:
- People with advanced, potentially fatal illnesses and those close to them should be able to expect and receive reliable, skillful, and supportive care.
- 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.
- 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:
- Strengthen methods for measuring the quality of life and other outcomes of care for dying patients and those close to them
- Develop better tools and strategies for improving the quality of care and holding health care organizations accountable for care at the end of life
- Revise mechanisms for financing care so that they encourage rather than impede good end-of-life care and sustain rather than frustrate coordinated systems of excellent care
- Reform drug prescription laws, burdensome regulations, and state medical board policies and practices that impede effective use of opioids to relieve pain and suffering
- 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.
- Palliative care should become, if not a medical specialty, at least a defined area of expertise, education, and research.
- The nation's research establishment should define and implement priorities for strengthening the knowledge base for end-of-life care.
- 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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