After four decades of work -- first on patients' rights, then on family and caregiving relationships, and most recently on systemic reform -- we now know that it will take additional efforts in all three areas to improve care at the end of life, concludes an article in the New England Journal of Medicine.
Although there has been progress in improving care near the end of life, early "optimism that the establishment of patients' legal and ethical rights to make decisions about their own care would lead to more appropriate end-of-life treatment faded in the face of sobering data showing that declaring these rights was not enough to alter treatment patterns and that systemic issues loomed large," write three experts on end-of-life care in an article in the February 12 issue of the New England Journal of Medicine.
The article is by Susan M. Wolf, Nancy Berlinger, and Bruce Jennings, the authors of The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life (Oxford University Press, 2013). The book is a revised and expanded edition of The Hastings Center's groundbreaking 1987 guidelines.
Wolf is 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 who directed the multi-year research project that supported the Guidelines revision; and Jennings is director of bioethics at the Center for Humans and Nature, a senior advisor to The Hastings Center, and an author of the 1987 guidelines. Wolf and Jennings are also Hastings Center Fellows.
The article assesses 40 years of intensive effort to improve care of patients as they approach death, identifies the successes achieved and lessons learned, and proposes strategies for continued progress. "This history has demonstrated the need to attack the problem at all levels, from individual rights to family and caregiving relationships to institutional and health systems reform," the authors write.
They divide the history of work on improving end-of-life care into three stages:
The article concludes with recommended strategies to continue progress in improving end-of-life care:
First, clinicians can be trained in the communications skills needed to help patients and their surrogates make informed decisions about care near the end of life.
Second, systemic improvements can be designed to assist all professions involved in caring for patients who are facing decisions about life-sustaining equipment or nearing the end of life. For example, clinicians should have access to at least generalist palliative care training.
Third, systemic and financing reforms should be enacted. The authors cite current incentives that work against dying patients' choices, interest, and safety, such as referrals of dying patients to the intensive care unit for dialysis, the nonbeneficial use of feeding tubes in patients with end-stage Alzheimer's disease, and late hospice referrals for patients 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 health care finance and delivery systems that make high-quality care genuinely available," the authors conclude. They call on federal, state, and organizational authorities to formulate standards that support this progress, and for health care leaders, administrators, and clinicians to identify and address persisting care problems within their organizations. "The millions of Americans facing life-threatening conditions deserve no less."
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