Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life : Preface

This book aims to equip readers with the best available advice on how to make substantial improvements in the health care system so that it serves the seriously ill person who is coming to the end of life. Most of the examples here come from an extraordinary yearlong collaborative on improving end-of-life care. Cosponsored by the Institute for Healthcare Improvement and the Center to Improve Care of the Dying, the project included more than four dozen health care organizations committed to changing practices for the sake of real quality improvement. As care improved, groups found that they were often able to improve their systems' usual functioning as well. The Breakthrough Series teams tried changes in four critical areas: controlling pain and other symptoms; improving advance care planning; helping and comforting patients and families; and developing continuity of care. Almost all made gains, and what they did will inspire and guide others. Their innovative projects provide a wonderful template for other organizations interested in improving the way people die in America's health care system.

This sourcebook features strategies to improve care that any manager of any health care system can try, almost immediately - doctors in offices, nurse managers on hospital units, social workers for long-term care facilities, administrators of home care and hospice agencies, hospital chaplains, directors of volunteer services, and others. The gains organizations have made in improving care and the changes they attempted and the successes they achieved are described. Each chapter offers step-by-step stories of successful efforts that are models of how to close the gap between what is known about good end-of-life care and what is actually done for patients.

In describing others' experiences, this book highlights ideas and how-to information so that others can begin to make the small changes that lead to real gains and improvement. While the focus is on ideas that worked, this book also includes a few that taught us much in their failings. Ultimately, we hope to provide the insight and inspiration to address this major public health problem by creating reliably good health care for everyone facing serious illness.

Part 1 suggests quality improvement projects most organizations can attempt right now. These are based on the rapid-cycle breakthrough approach to quality improvement - the Plan-Do-Study-Act (PDSA) model, in which teams define problems, set goals, try changes, and see what happens. Throughout, readers will find examples of how Breakthrough Series teams used this model to improve not only their practices but also the lives of patients and their loved ones.

Part 2 focuses on changes patients and families often demand or would most benefit from - better and more reliable pain and symptom control, better advance care planning, and increased spiritual and psychosocial support.

Part 3 describes environments that encourage better practice. It describes the role and structure of palliative care services and their financing; ways to improve and integrate management information systems with clinical and financial systems; the human resources issues unique to this field; and opportunities for change in law and public policy.

Part 4 discusses opportunities for change in caring for patients with specific diseases: dementia and Alzheimer's, cancer, depression and delirium, and congestive heart failure and chronic obstructive pulmonary disorder. The last chapter, "Getting Started," gives specific tips on how to get something done - by next Tuesday. We also provide a glossary.

We are grateful for the opportunity to serve readers who are caring for seriously ill patients. We will appreciate your responses and suggestions, your stories, and the resources you find useful. We hope that when groups improve their own practices, they will share their programs, innovations, and successes with us by contacting the Washington Home Center for Palliative Care Studies and letting us share their stories with others. Please send them to Washington Home CPCS, 4200 Wisconsin Ave., NW, 4th Fl., Washington, DC 20016.

This book owes its existence to the Retirement Research Foundation of Chicago, Illinois, which gave a generous grant to enable us to work on it over two years. In addition, the Alfred P. Sloan Foundation of New York City has supported development of a companion book for patients, families and caregivers, Handbook for Mortals: Guidance for People Facing Serious Illness, and that simultaneous work has enriched this book. The Oxford University Press and especially our editor, Joan Bossert, have been most supportive, flexible, and efficient. We also note with gratitude the guidance and commitment of James Levine, our literary agent.

Proceeds from the sale of this book will support Americans for Better Care of the Dying (ABCD), a national charitable organization dedicated to public education and policy advocacy on behalf of improving care for the last phase of life. Updates and reference information will readily be found on the Web site: ABCD's monthly newsletter, The Exchange, which is available by subscription or on the Web, keeps pace with change and innovations in this field. We invite all readers to join ABCD to help raise a voice for good care at the end of life.

Just wanting to improve the way an organization provides end-of-life care puts health care managers and providers in excellent company. Some of the most prestigious and progressive hospitals, nursing homes, home care agencies, and hospices in America are undertaking the same task. And so too are some hospitals and home care agencies in the poorest and most disenfranchised communities in the country. All have found that improvement is possible. Although each approaches its problems differently, each has something to teach about improving end-of-life care.

Many people have been involved in writing and editing this book. Among us, we have cared for thousands of people who died. Also among us are some well-known leaders of quality improvement and managers of large care systems. We are grateful for all those who so graciously contribute to help improve care for us all when we face the end of life.

A Note About the Electronic Sourcebook

There are some differences between the printed and electronic versions of Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians. The Instruments and Resources sections are only available in the printed book. Due to size constraints some of the graphic figures did not translate well to web viewing. Please refer to the printed book if you have any difficulty viewing the figures here.

Thanks to Lisa Spear for her efforts in bringing the Sourcebook online. The electronic verson was developed using systems provided by Growth House, Inc.

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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ ] and Oxford University Press. All rights reserved.

For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ ].

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