DECISIONS NEAR THE END OF LIFE

Decisions Near the End of Life was a ground-breaking, institution-based, interdisciplinary continuing medical education program jointly sponsored by Education Development Center, Inc. (EDC), The Hastings Center, The American Medical Association, and The Hospital Research and Educational Trust, an affiliate of The American Hospital Association. The program was developed by EDC and The Hastings Center through the generous support of the W.K. Kellogg Foundation of Battle Creek, Michigan. From 1991 through 1997, it was disseminated by the program cosponsors in cooperation with the American Bar Association.

The Decisions program involved a commitment by a hospital or nursing home to help their professional staff and patients improve the way ethical decisions are made. It began by asking health care professionals to define their concerns and needs, and then helped them design their own solutions for improving care to the critically and terminally ill.

Two hundred and twenty-five hospitals and nursing homes in 32 states participated in this program. EDC staff directly trained more than 1000 physicians, nurses, social workers, and pastoral counselors, who in turn have trained approximately 40,000 colleagues at their institutions.

In 1996-97, through a generous grant from the Open Society Institute’s Project on Death in America, the program was adapted for interdisciplinary teams of clinicians working in comprehensive and community cancer centers. Decisions Near the End of Life: Focus on Cancer Care was piloted in 19 cancer centers nationwide.

PROGRAM ATTENDEES

The Decisions program focused on the institution as a whole, and involved teams of health care professionals made up of physicians, nurses, social workers, administrators, attorneys, pastoral counselors and other staff from the same hospital or nursing home.

PROGRAM GOALS

To improve clinicians’ understanding of medical ethics and their ability to integrate that understanding into clinical practice

To support the involvement of patients and their families in decisions about the ways in which they live and die

To strengthen institutional policies and procedures regarding the use of life-sustaining treatments

To improve communication among providers, patients, and families concerning the difficult medical ethics issues posed by the availability of life-sustaining technologies

To delineate appropriate roles and responsibilities for the various disciplines involved in critical and terminal care, fostering teamwork, conflict resolution, and mutual support.

PROGRAM COMPONENTS

Each component of the program is described below.

Leadership Training

A two and one-half day national or regional training conference prepared leadership teams from each participating institution to implement all phases of the Decisions program. Participants attended a series of lectures and seminars, developed the skills necessary for leading seminars on ethics topics, and gained practice in leading such sessions in preparation for delivering the Decisions program back at their own institutions. Distinguished faculty from The Hastings Center and Education Development Center, experienced leaders from previous Decisions institutions, and invited national experts provided information on the latest thinking in bioethics and assisted the teams in developing implementation plans specific to their own institution’s needs.

Institutional Profile

At each participating site, professional staff who worked with critically and terminally ill adults were invited to complete the Institutional Profile survey instrument, which was developed specifically for this program to assess health care providers’ knowledge, attitudes, and self-reported practice in decision making about end-of-life care. The results of the survey provided each institution with a means of identifying the attitudes and beliefs of their staff regarding ethical issues and practices. EDC analyzed the information collected at each site and provided easy-to-read summaries and charts that could be used as the basis for an institution’s own customized program.

On-site Program

After the Leadership Training and Institutional Profile survey were completed, the hospital or nursing home conducted grand rounds and teaching seminars on ethics, using the print and audiovisual materials provided. EDC provided technical assistance to the sites to help them implement the program, and a periodic newsletter, which linked participating institutions, reported on their program accomplishments, and analyzed developing ethical issues relevant to the Decisions program.