Hastings Center Charts New Course for Dying Patients During Congressional Briefing

Hastings Center's research says new laws aren't needed and urges shift from treating patients in isolation to embracing patients' and families' collective needs.

By None, The Hastings Center, Dec. 7, 2005

On Thursday, November 10, 2005, The Hastings Center released the conclusions of its recent research project on end-of-life care at a Congressional briefing in the Rayburn House Office Building. The project described the progress made in the past decade on improving end-of-life care and identified challenges that remain.

Left: Congressman David Price opened the congressional briefing.

The conclusions are presented in a report Improving End of Life Care: Why Has It Been So Difficult? which contains 10 essays by some of the most influential thinkers who helped shape the ethical and legal framework for end-of-life care over the past 20 years. The essays provide a synoptic overview of the most important and influential developments in end-of-life care, take stock of their successes or failures, and provide a sense of what more needs to be done. The research project, publication, and briefing were supported by a grant from the Robert Wood Johnson Foundation.

Less than a year after Terri Schiavo's death exposed a deep divide about care at the end of life, this report concludes that too many Americans still receive poor end-of-life care and that improvements will occur only when whole families take collective responsibility at life's end. The conclusions run counter to the prevailing perspective that focuses primarily on patients and makes little room for involvement of doctors and families.

Left: Joanne Lynn, a scientist at the RAND Corporation, described the common trajectories people follow toward the end of their lives.

At the briefing, the research project co-directors Thomas H. Murray and Bruce Jennings outlined where the movement to reform end-of-life care should head, what challenges must be overcome to meet those goals, and what role there is for policymakers in the process. They were joined by Hastings Center Fellows Dr. Joanne Lynn and Alan Meisel, who offered perspectives on health care system reform and the role of law in end-of-life care.

Published as a special supplement to the November/December 2005 Hastings Center Report, the study lays out ideas for a new strategy to improve care for the dying. With the goal of building a better system of care, the authors recognize the collective needs of patients and families, suggest how to overcome the challenge of seeking broader input, and provide examples of ways to revaluate and improve advance directives and surrogate decision-making.

In the closing essay, Murray and Jennings conclude:

"Our understanding of what happens at the end of life has evolved over the past decade, reflecting the spiritual and medical matters most important to the American people. But there is still little knowledge on how end-of-life decisions should be made and the practice of how such decisions actually are made at the bedside. What we need is a system that strengthens the capacity of families and providers to be more effective decisionmakers, especially for patients who have lost the capacity to decide for themselves."

The authors call for investments over the next decades in public education campaigns that will lead to discussions in communities, at kitchen tables, and in health care settings about end-of-life care issues and decisions. If end-of-life care is to improve, Murray and Jennings say the American public will have to shift the focus away from procedure and process to substantive debates that will help "tell us what to decide, not just how to go about deciding" for dying Americans.

Electronic copies of "Improving End-of-Life Care: Why Has It Been So Difficult?" and of the executive summary of the report are available free.

Individual printed copies may be purchased for $15 each, plus $3.50 shipping (add $.50 for each additional copy). To place an order and inquire about bulk shipping discounts, please contact the Publications Department by phone: (845) 424-4040 ext. 234 or email publications@thehastingscenter.org.

Photos above by Aaron G. Marsh, National Association for Home Care & Hospice.

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