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University of California Press

About the Book

Just a few generations ago, serious illness, like hazardous weather, arrived with little warning, and people either lived through it or died. In this important, convincing, and long-overdue call for health care reform, Joanne Lynn demonstrates that our current health system, like our concepts of health and disease, developed at a time when life was mostly short, serious illnesses and disabilities were common at every age, and dying was quick. Today, most Americans live a long life, with the disabilities and discomforts of progressive chronic illness appearing only during the final chapters of their life stories. Sick to Death and Not Going to Take It Anymore! maintains that health care and community services are not set up to meet the needs of the large number of people who face a prolonged period of progressive illness and disability before death. Lynn offers what she calls an "owner's manual for the health care system," which lays out facts, concepts, strategies, and action plans for genuine reform and gives the reader new ways to interpret information creatively, imagine innovative possibilities, and take steps to implement them.

About the Author

Joanne Lynn is Director of The Washington Home Center for Palliative Care Studies, Senior Scientist at the RAND Corporation, and President of Americans for Better Care of the Dying. She is the coauthor of Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians (2000) and Handbook for Mortals: Guidance for People Facing Serious Illness (1999), among other books. She has coedited several books, including A Good Dying: Shaping Health Care for the Last Months of Life (1998) and By No Extraordinary Means: The Choice to Forgo Life-Sustaining Food and Water (1986). She has also been a physician serving people living out the end of life in hospices, nursing homes, home care, and hospitals.

Table of Contents

List of Illustrations and Tables 
Foreword 
Acknowledgments 
Introduction 

1. JUST THE FACTS 
Serious Chronic Disease in the Last Phase of Life 
Living with Chronic Conditions . Shortcomings in Current Care .
The Baby Boom Grows Old . Who Will Provide Care? . “Dying” and
the Problem of Prognostication . Which Illness Will It Be? .
Costs and Who Pays . The Shape of Things to Come

PERSPECTIVE: THE LONELINESS OF THE LONG TERM CARE GIVER 
by Carol Levine 

2. SEEING THE WORLD DIFFERENTLY
Ideas to Shape Reform 
Life Span Perspective . Rethinking the Transition Model .
Misleading Words and Ideas . The “No Surprise” Question . Trajectories of
Illness across Time . Frequency of Trajectories . Anticipating Challenges .
Creating and Naming a Category . More Patients, Fewer Caregivers .Working
Out Patterns of Cost . Summary of Ideas to Shape Reform

PERSPECTIVE : QUALITY COMES HOME 
by Donald M. Berwick 

3. GOOD CARE FOR SOME PEOPLE SOMETIMES 
Hospice . Palliative Care at Home . Palliative Care in Hospitals . PACE:
All-Inclusive Care . The Chronic-Care Model . Coordinating and
Managing Care . Quality Improvement . Caregiver Programs . Practice
Guidelines and Audit Tools . Gems and Strategies for Change

PERSPECTIVE IN BRITAIN, PROGRESS IN CARE FOR THE LAST PART OF LIFE 
by Joanne Lynn 

4. SURVERYING THE TERRAIN 
Opportunities and Challenges
Key Features of Change . Caregivers as a Political Force . The Business
Case for Change . Promoting Coordinated Care . Barriers
to Reform . Avoiding Low-Impact Reforms

PERSPECTIVE: THE CASE FOR REFORMING U.S. HEALTH CARE
by the Committee on Quality of Health Care in America, Institute of Medicine 

5. GOOD CARE FOR US ALL
Building the Care System to Count On 
Reprise of the Current Situation . Trajectories Form a Basis for Achievable
Excellence . MediCaring: From Promises to Practical Program . Methods to
Achieve Reform . Reforms to Implement Right Away! . Forging the
Will to Make Improvements Happen

Appendix: An Agenda for Action 
References 
Index 
 

Reviews

“The provocative title of this book draws the reader into Joanne Lynn’s discussion of the multiple healthcare community services. . .” “Overall, Lynn makes an articulate case for the need to develop shared visions of change in a country that lacks the language to describe the experience of death and dying.”
Geriatric Literature
"Joanne Lynn is a national treasure—the most articulate, courageous, and scientifically-grounded voice in our nation for the improvement of health care for people approaching the end of life. For the public and professionals alike, her work provides motivation and sound guidance for building the care system we need, a system that we do not yet, by any means, have."—Donald M. Berwick, M.D., M.P.P., President and CEO, The Institute for Healthcare Improvement