Resources

The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research was the first group to conduct a major government study on death. The Commission's reports, Defining Death: Medical, Legal, and Ethical Issues in the Determination of Death (1981), Making Health Care Decisions: The Ethical and Legal Implications of Informed Consent in the Patient-Practitioner Relationship (1982), and Deciding to Forego Life-Sustaining Treatment (1983) have set the standards for many medical and bioethical debates.

The National Center for Health Statistics (NCHS) of the Centers for Disease Control and Prevention (CDC), in its annual publication Health, United States, 2003 (2003), provides a statistical overview of the nation's health. The NCHS periodical National Vital Statistics Reports supplies detailed U.S. birth and death data for 2001 and 2002. The CDC reports on nationwide health trends in its Advance Data reports, Morbidity and Mortality Weekly Report, HIV/AIDS Surveillance Report, Trends in Health and Aging, and Longitudinal Studies of Aging. The Centers for Medicare and Medicaid Services (formerly known as the Health Care Financing Administration), Office of the Actuary, National Health Statistics Group, reports on the nation's health care spending.

The U.S. Census Bureau publishes a wide variety of demographic information on American life. U.S. Interim Projections by Age, Sex, Race, and Hispanic Origin incorporate the results of the 2000 census, and An Aging World: 2001 (2001) provides information on aging.

The Alliance for Aging Research (AAR) promotes scientific research in human aging and conducts educational programs to increase communication and understanding among professionals who serve the elderly. Particularly useful among its data are Seven Deadly Myths: Uncovering the Facts about the High Cost of the Last Year of Life (1997), One Final Gift: Humanizing the End of Life for Women in America (1998), and Great Expectations: Americans'Attitudes on Aging Research (2001).

In 2004 Partnership for Caring and Last Acts merged to create Last Acts Partnership. This organization provides education, service and counseling about end-of-life care. Its Web site provides free downloads of advance directives; a variety of consumer-oriented materials; and access to information, products and services for medical and health care professionals.

The United Network for Organ Sharing (UNOS) manages the national transplant waiting list, maintains data on organ transplants, and distributes organ donor cards. Valuable information on these topics is available in the 2002 Annual Report of the U.S. Scientific Registry for Transplant Recipients and the Organ Procurement and Transplantation Network.

The National Right to Life Committee can provide a copy of The Will to Live, an alternative living will, while End-of-Life Choices (formerly the Hemlock Society USA) provides news and bulletins on Oregon's Death with Dignity Act and other end-of-life legislation. The American Bar Association (ABA) Commission on Legal Problems of the Elderly publishes information related to advance directives.

The Hospice Association of America and the National Hospice and Palliative Care Organization both collect data about hospice care. For cancer statistics, a premier source is the American Cancer Society's annual report Cancer Facts and Figures.

Journals that frequently publish studies dealing with life-sustaining treatment, medical ethics, and medical costs include Annals of Internal Medicine (Philadelphia), Journal of the American Geriatrics Society (New York), Journal of the American Medical Association (Chicago), the Lancet (London, England), and the New England Journal of Medicine (Boston).

The Gallup Organization (Princeton, New Jersey), Harris Interactive (New York), and the Roper Center for Public Opinion Research (University of Connecticut) have all conducted opinion polls on various topics related to death and dying, as has the Polling Report, Inc.

The Henry J. Kaiser Family Foundation (Menlo Park, California) provides a wealth of information on Medicare, Medicaid, health insurance, prescription drugs, HIV/AIDS, and nursing homes.