NIH State-of-the-Science Conference Statement on improving end-of-life care

Abstract

Objective: To provide health care providers, patients, and the general public with a responsible assessment of currently available data on improving end-of-life care.

Participants: A non-DHHS, non-advocate ten-member panel representing the fields of geriatrics, psychiatry, economics, health policy, nursing, philosophy, epidemiology, and oncology. In addition, 19 experts from fields related to the subject matter of the conference presented data to the panel and to the conference audience.

Evidence: Presentations by experts and a systematic review of the medical literature prepared by the Southern California Evidence-based Practice Center, through the Agency for Healthcare Research and Quality's Evidence-based Practice Centers Program. Scientific evidence was given precedence over clinical anecdotal experience.

Conference process: Answering pre-determined questions, the panel drafted its statement based on scientific evidence presented in open forum and on the published scientific literature. The draft statement was read in its entirety on the final day of the conference and circulated to the audience for comment. The panel then met in executive session to consider the comments received, and released a revised statement later that day at http://www.consensus.nih.gov. This statement is an independent report of the panel and is not a policy statement of the NIH or the Federal Government. A final copy of this statement is available, along with other recent conference statements, at the same web address of http://www.consensus.nih.gov.

Conclusions: (1) Circumstances surrounding end of life are poorly understood, leaving many Americans to struggle through this life event. (2) The dramatic increase in the number of older adults facing the need for end-of-life care warrants development of a research infrastructure and resources to enhance that care for patients and their families. (3) Ambiguity surrounding the definition of end-of-life hinders the development of science, delivery of care, and communications between patients and providers. (4) Current end-of-life care includes some untested interventions that need to be validated. (5) Subgroups of race, ethnicity, culture, gender, age, and disease states experience end-of-life care differently, and these differences remain poorly understood. (6) Valid measures exist for some aspects of end of life; however, measures have not been used consistently or validated in diverse settings or with diverse groups. (7) End-of-life care is often fragmented among providers and provider settings, leading to a lack of continuity of care and impeding the ability to provide high-quality, interdisciplinary care. (8) Enhanced communication among patients, families, and providers is crucial to high-quality end-of-life care. (9) The design of the current Medicare hospice benefit limits the availability of the full range of interventions needed by many persons at the end of life.