End-of-Life Care and Outcomes: Summary

To evaluate progress in the field of end-of-life care and clarify research priorities, the National Institute of Nursing Research (NINR), with the Agency for Healthcare Research and Quality (AHRQ), commissioned this evidence report as the basis for a State-of-the-Science Conference in December 2004. The need for such an assessment is clear. More than 75 percent of Americans now live past age 65, and 83 percent of Americans now die while covered by Medicare. In 2000, the average life expectancy for Americans was 80 years for women and 74 years for men, compared to just 49 years in 1900. By 2050, life expectancy for women and men will likely increase to 84 and 80, respectively. A century ago, death came to most Americans suddenly. Today, many Americans live their last years with a chronic health condition, and about 40 million people, 15 percent of the adult U.S. population, are limited in activities from such a condition. 5 Population aging patterns suggest that in the coming decades, larger numbers of Americans will be coping with serious impairments late in life. For the relatively healthy, a care system focused on curing acute intermittent illness is adequate. For persons living with advanced, chronic disease, neither prevention nor cure are ordinarily possible. Instead, patients and families struggling with serious illness have other concerns, including managing pain and other symptoms, coordinating care among multiple providers and settings, ensuring that treatments reflect preferences and balance benefits and harms as well as medical appropriateness, achieving empathic communication and care, fostering well-being (including spiritual concerns), maintaining function, and practically supporting family and caregivers through illness and bereavement.