now experienced by most people. Except for the occasional newspaper feature or television documentary, the reality of dying as most often experienced in the United States has been largely shunned by the news, information, and entertainment media as distasteful or uninteresting. One result is an unhelpful combination of fear, misinformation, and oversimplification that contributes to a public perception of misery as inescapable, pain as unavoidable, and public spending as misdirected for people approaching death.

Recommendations and Future Directions

Seven recommendations address different decisionmakers and different deficiencies in care at the end of life. Each applies generally to people approaching death including those for whom death is imminent and those with serious, eventually fatal illnesses who may live for some time. Each is intended to contribute to the achievement of a compassionate care system that dying people and those close to them can rely on for respectful and effective care.

RECOMMENDATION 1: People with advanced, potentially fatal illnesses and those close to them should be able to expect and receive reliable, skillful, and supportive care. Educating people about care at the end of life is a critical responsibility of physicians, hospitals, hospices, support groups, public programs, and media. Most patients and families need information not only about diagnosis and prognosis but also about what support and what outcomes they should reasonably be able to expect. They should, for example, not be allowed to believe that pain is inevitable or that supportive care is incompatible with continuing efforts to diagnose and treat. They should learn—before their last few days of life—that supportive services are available from hospices and elsewhere in the community and that those involved in their care will help arrange such services. Patient and family expectations and understanding will be aided by advance care planning that considers needs and goals, identifies appropriate surrogate decisionmakers, and avoids narrow preoccupation with written directives. To these ends, health care organizations and other relevant parties should adopt policies regarding information, education, and assistance related to end-of-life decisions and services. For those who seek to build public understanding of dying as a part of life and to generate public demand for better supportive services, one model can be found in the perspectives, spirit, and strategies that have guided efforts to promote effective prenatal care and develop mother and family-oriented arrangements for childbirth.

The National Academies of Sciences, Engineering, and Medicine
500 Fifth St. N.W. | Washington, D.C. 20001

Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement