New Book “Having Your Own Say” Outlines End-of-Life Decision Making
A new book from the Gundersen Health System, Having Your Own Say: Getting the Right Care When It Matters Most, outlines health systems that have adopted programs for preparing families for end-of-life decisions. Featuring expert authors from across the U.S. and abroad, the book examines patient- and family-centered care models, how to improve support for families in advanced care planning, ways to reduce health care costs, and next steps for sustainably improving care. The book is published by the Center for Health Transformation, a collaboration of private and public sector leaders aiming to improve health care for Americans while keeping costs low. The Center was founded in 2003 by the Gingrich Group, a consulting firm of former Speaker of the House Newt Gingrich.
Read a review of Having Your Own Say in this post by Laura Landro in the Health Blog of the Wall Street Journal.
A primary example offered by the book is Gundersen’s Respecting Choices program. Based in LaCrosse, WI, Gundersen Health System is part of the Coalition to Transform Advanced Care, a movement to increase the number of health systems that offer care at home instead of hospitalization, avoiding unwanted treatments while providing comfortable pain and symptom management. Gundersen experts propose methods that would improve quality of life and satisfaction for individuals with advanced illness while cutting an estimated $25 billion in annual health care costs.
Other systems featured include Honoring Choices Minnesota, California’s Sutter Care at Home, Australia’s Respecting Patient Choices program, and the Aetna Compassionate Care Program. A chapter by palliative care experts R. Sean Morrisson and Diane Meier addresses the value of palliative care as it pertains to patient outcomes. The book also features individual perspectives on advance care planning from patients and families.
Reviews on the book from journalists, authors, politicians and experts in the field of end-of-life, hospice and palliative care:
“Our healthcare system routinely fails people facing the end of life. But the authors of this book offer hope that this can change. More than that, they show how. No one has been more effective in demonstrating how much better healthcare can be.” —Atul Gawande, New Yorker staff writer and author of The Checklist Manifesto
“In this transformative time for healthcare in America, these contributors and editors have given us a fresh and illuminating perspective. I would encourage every state and federal lawmaker interested in informed health policy to read this book carefully.” —Former Senator Tom Daschle
“We all experience it…an older loved one managing a number of complex health issues suddenly swept into the oft swirl of treatments and interventions that confuse and sometimes seem devoid of choice and voice of that person. The end result of this experience can produce inadvertent outcomes. This set of thoughtful and knowledgeable authors take a 360 degree view of the science, knowledge, policy, practice and personal experience that can help to improve the ‘system’ and enhance, if not assure, that our preferences and goals can be woven in the care to produce a net result of greater dignity, care quality and even mitigation of unneeded costs both personally and societally.” —Jennie Chin Hansen, RN, MS, FAAN, CEO, American Geriatrics Society
“Having Your Own Say is an eloquent guide from the pioneers who are leading us all on a more humane, sensitive, and sensible path through the final journey of life.” —Ellen Goodman, Washington Post longtime syndicated columnist
“When a loved one is seriously ill, our fragmented and impersonal healthcare system often fails to offer the kind of care we all would want. This important volume shows that there is a better way. I recommend it for everyone who believes, as I do, that we can do better in caring for those with advanced illnesses, and that we can afford to do this if we do it right.” —John Rother, president and CEO, National Coalition on Health Care
“Most Americans want to have control over decisions made regarding their care. This book provides proven solutions for making sure your voice is heard even when you may be too ill to speak for yourself.” —Frank Luntz,New York Times best-selling author
“There are few issues facing our country, our economy, our healthcare system, and our families that are more pressing than this one. We must take bold and decisive action to prepare ourselves to face this future – our futures – by doing what works, empowering the public, educating health professionals, and creating policy change. This book presents a blueprint for success that should be heeded.” —Nancy Brown, CEO, American Heart Association, and co-chairman, Coalition to Transform Advanced Care Steering Committee
“As the original provider of patient-centered, palliative care, hospice providers have found that high-quality care – delivered in all settings – begins with a conversation with the patient and their loved ones. This collection of articles demonstrates the essential character of knowing and then honoring the goals and desires of the patient as we provide interdisciplinary care that treats the whole person and not just the illness.” —Don Schumacher, president and CEO, National Hospice and Palliative Care Organization