The comprehensive study, known as the Commonwealth-Cummings Project on the End of Life, is the largest research effort on this subject conducted in the last decade and will provide information that reflects the big changes that have taken place in health care, including the growth of managed care, said Ezekiel Emanuel, MD, PhD, co-director of the study. Dr. Emanuel is chairman of the department of bioethics at the National Institutes of Health. The other co-director for the project is Linda Emanuel, MD, PhD, vice president of the Institute of Ethics at the American Medical Association.

New, comprehensive research on end-of-life issues was badly needed, according to Dr. Ezekiel Emanuel. Research conducted in the 1980s does not address issues and attitudes affecting dying patients and their caregivers today, and more recent studies have been limited in scope, he explained.

Dr. Emanuel joined forces with two private funding organizations to launch a broad research effort that would look at caregiving needs, the economic burdens of caregiving, euthanasia and suicide, the impact of managed care, pain management, suffering, and the inner life and spirituality of dying patients. "One of the major aspects of this study is that it focuses attention on the question of what we mean by a ‘good death,’" Dr. Emanuel said.

The study will produce a series of research papers that will look at end-of-life issues from new perspectives. For example, it will be the first to compare end-of-life treatment in managed care vs. non-managed care settings. Questions will include whether there are differences in quality of care, levels of pain, access to services, and patient-doctor relationships. The pain management report will go beyond the traditional question of whether patients receive enough treatment for their pain. Recognizing that patients have different levels of pain tolerance and different attitudes about pain, the study will focus on the extent to which pain treatment needs are, or are not, met by health care professionals, Dr. Emanuel said.

The end-of-life study is being funded by the Commonwealth Fund and the Nathan Cummings Foundation, both in New York. Eight research papers are to be published, one on each component of the project.

The first, looking at caregiving needs of dying patients, appeared in the September 23, 1999 issue of the New England Journal of Medicine. The second is scheduled to appear in the Annals of Internal Medicine in March. The article will look at the economic and other burdens on the caregivers of terminally ill patients. As the first paper revealed, these caregivers are family members in 96 percent of the cases. Interviews for the series of studies were conducted in 1996 and 1997 in six cities across the US.