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Vol. LVIII, No. 5
March 10, 2006

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The Science of End-of-Life Care

NIH has funded many medical advances that help people live longer lives. But as the life expectancy of people with chronic and complex health conditions goes up, maintaining their quality of life becomes more difficult. A 1997 report from the Institute of Medicine, Approaching Death: Improving Care at the End of Life, found widespread dissatisfaction with end-of-life care and many gaps in scientific knowledge about the topic.

A conference on improving care was held at the end of 2004 to evaluate the field and help determine future directions for research. A special supplement of the Journal of Palliative Medicine now documents the event.

The conference, sponsored primarily by NINR and NIH's Office of Medical Applications of Research, brought together almost 1,000 health care practitioners from around the world, including nurses, physicians, social workers and others who work with dying people. After hearing from many experts, a panel found that many aspects of end-of-life care are poorly understood, leaving many American families to struggle through this life event.

The research is, in many ways, still in its infancy. To begin with, there's ambiguity about the term "end-of-life," which is usually defined by the regulatory environment rather than scientific data. Terms such as "palliative care," "end-of-life care" and "hospice care" are used interchangeably. Clear definitions of these terms could improve the delivery of care since good, consistent communication among patients, families and providers is crucial to high-quality end-of-life care. In addition, valid measurements of concepts such as quality of life would lay a better foundation for research.

Our understanding of what processes and interventions can improve outcomes is poor. Current end-of-life care includes some untested interventions that need to be validated. Beyond the field of pain management, the panel found, the quality of evidence on symptom management is limited. Race, ethnicity, culture, gender, age and disease states have some impact on the end-of-life experience. How these factors affect outcomes isn't well understood.

Many "system factors" are poorly understood as well. End-of-life care is often fragmented among providers and settings, leading to a lack of continuity in care. The panel cited the regulatory environment as a common barrier preventing people from getting the full range of interventions they need at the close of their lives.

End-of-life care can be an uncomfortable topic, but more research can improve all our experiences at this difficult juncture. NINR is the lead institute at NIH for such research; its portfolio in pain and other symptom management, care of the chronically and critically ill, family involvement in decision-making for incapacitated patients and family caregiving has provided a knowledge base to build on.

Future research priorities will be to develop biomarkers and other objective measures of impending death, to include end-of-life research in existing clinical trial networks, to recruit minority populations into research and to improve the use of technology in providing care. This research should lead to improvements in pain and other symptom management for the dying, better planning and decision-making in care and treatment and insights into how best to communicate with and involve family and friends.

The journal supplement, co-sponsored by NINR and NCI, is available free online at

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