Patients’ and residents’ declaring their legal and ethical rights to make decisions about their own care at the end of life has not been enough to alter treatment patterns; systemic issues remain, according to an article in a recent New England Journal of Medicine.
The article assesses 40 years of intensive effort to improve care of patients/residents as they approach death and identifies the successes achieved and lessons learned. The authors also share three strategies whereby the healthcare system might continue to improve end-of-life care:
- Train clinicians in the communication skills needed to help patients/residents and their surrogates make informed decisions about care near the end of life.
- Design systemic improvements to assist all professions involved in caring for patients/residents who are facing decisions about life-sustaining equipment or nearing the end of life. For example, clinicians should have access, at least, to generalist palliative care training.
- Enact systemic and financing reforms. Current incentives work against dying patients’ choices, interest and safety, according to the authors. As examples, they mention referrals of dying indiv to the intensive care unit for dialysis, the nonbeneficial use of feeding tubes in those with end-stage Alzheimer’s disease and late hospice referrals for those with cancer.
“More work is needed at all levels—to protect patients’ rights to choose care options, to improve the quality of clinical care and clinicians’ responsiveness to patients and families, and to create well-functioning healthcare finance and delivery systems that make high-quality care genuinely available,” the authors write. They call on federal, state and organizational authorities to formulate standards that support this progress, and for healthcare leaders, administrators and clinicians to identify and address persisting care problems within their organizations.
The article is written by Susan M. Wolf, JD, Nancy Berlinger, PhD, and Bruce Jennings. The three also are the authors of The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life, a revised and expanded edition of The Hastings Center’s 1987 guidelines.
Wolf is the McKnight Presidential Professor of Law, Medicine & Public Policy at the University of Minnesota and principal author of the 1987 guidelines; Berlinger is a research scholar at The Hastings Center and directed the multi-year research project that supported the revision of the guidelines; and Jennings is director of bioethics at the Center for Humans and Nature, a senior adviser to The Hastings Center and an author of the 1987 guidelines. Wolf and Jennings are also Hastings Center fellows.