People with chronic or life-threatening illnesses often experience problems with their care, including confusion and conflict over how to make good decisions, poor communication with care providers, inadequate pain and symptom relief, and treatments with little or no benefit.

The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life  (Oxford University Press) updates and significantly expands the Center’s groundbreaking comprehensive ethics guidelines, first published in 1987. The original editionwas foundational in shaping the ethical and legal framework for medical decision-making in the U.S. It was cited in the U.S. Supreme Court’s 1990 decision in the case of Nancy Beth Cruzan, which established the Constitutional right of patients to refuse life-sustaining medical treatments and affirmed the authority of surrogate decision-makers for patients without decision-making capacity. 

The new book synthesizes the past 26 years of research and innovation in quality improvement, patient safety, and palliative care, with insights from more than 60 experts in medicine, law, nursing, and other disciplines, as well as from the disability community and patient advocates. Two important new features include guidance on making decisions for seriously ill or dying children and a discussion of the views of people with disabilities who face decisions about life-sustaining treatment. 

“This new resource comes at a time of many challenges in our health care system,” says Mildred Z. Solomon, president of The Hastings Center and a member of the Guidelines project working group. “As the population ages, more people are living with chronic diseases. Advances in medicine have created both benefits and burdens, including problems of quality, safety, access, and cost.  We need to help patients and families better navigate their choices, and physicians and health care leaders must build systems of care that are wiser and more compassionate.” Dr. Solomon discusses Guidelines in this video.

The authors are Nancy Berlinger, a research scholar at The Hastings Center who directed the Hastings Center project that produced the new publication; Bruce Jennings, a Hastings Center Fellow, director of bioethics at the Center for Humans and Nature, and a co-author of the first edition of Guidelines; and Susan M. Wolf, also a Hastings Center Fellow, who is McKnight Presidential Professor of Law, Medicine & Public Policy at the University of Minnesota and who directed the first Guidelines project and was principal author of the first edition.