Palliative Care E-Book

• Herausgeber: John Wiley & Sons
• Kategorie: Fachliteratur
• Serie: Public Health/Robert Wood Johnson Foundation
• Sprache: Englisch

Seitenzahl: 814

Veröffentlichungsjahr: 2011

Beschreibung

Palliative Care is the first book to provide a comprehensive understanding of the new field that is transforming the way Americans deal with serious illness.

Diane E. Meier, M.D., one of the field's leaders and a recipient of a MacArthur Foundation "genius award" in 2009, opens the volume with a sweeping overview of the field. In her essay, Dr. Meier examines the roots of palliative care, explores the key legal and ethical issues, discusses the development of palliative care, and presents ideas on policies that can improve access to palliative care.

Dr. Meier's essay is followed by reprints of twenty-five of the most important articles in the field. They range from classic pieces by some of the field's pioneers, such as Eric Cassel, Balfour Mount, and Elizabeth Kübler-Ross, to influential newer articles on topics such as caregiving and cost savings of palliative care. The reprints cover a wide range of topics including:

• Why the care of the seriously ill is so important

• Efforts to cope with advanced illness

• Legal and ethical issues

• Pain management

• Cross-cultural issues

• Philosophical perspective

The demand for palliative care has been nothing short of stunning—largely because of palliative care's positive impact on both the quality and the cost of care provided to seriously ill individuals. By providing a wide-ranging perspective on this growing field, this book will serve as a guide for developing meaningful approaches that will lead to better health care for all Americans.

Leseprobe

Table of Contents

Title Page

Copyright Page

Foreword

Introduction

Acknowledgments

REVIEW OF THE PALLIATIVE CARE FIELD - THE DEVELOPMENT, STATUS, AND FUTURE OF ...

CARE OF THE SERIOUSLY ILL: WHY IS IT AN IMPORTANT ISSUE?

EFFORTS TO COPE WITH DEATH AND PROVIDE CARE FOR THE DYING

SOCIAL, LEGAL, AND ETHICAL CONCERNS LEADING TO CHANGE IN THE CARE OF PERSONS ...

RESEARCH ON CARE OF THE SERIOUSLY ILL

PRIVATE SECTOR PHILANTHROPY AS CATALYST OF SOCIAL CHANGE

THE GROWTH OF PALLIATIVE CARE

THE FAMILY CAREGIVER

PAYING FOR PALLIATIVE CARE

EXPLAINING THE RAPID GROWTH OF PALLIATIVE CARE: QUALITY AND COST

THE WAY FORWARD

BACK TO BASICS: WHAT ARE THE ENDS OF MEDICINE? WHAT ARE THE ENDS OF A SOCIETY?

CARE OF THE SERIOUSLY ILL: WHY IS IT AN IMPORTANT ISSUE?

Chapter 1 - APPROACHING DEATH: IMPROVING CARE AT THE END OF LIFE

EDITORS’ INTRODUCTION

SUMMARY

CONTEXT AND TRENDS

CONCEPTS AND PRINCIPLES

CARING AT THE END OF LIFE: DIMENSIONS AND DEFICIENCIES

RECOMMENDATIONS AND FUTURE DIRECTIONS

CONCLUSION

Chapter 2 - DECISIONS NEAR THE END OF LIFE

EDITORS’ INTRODUCTION

DEFINITIONS

ETHICAL FRAMEWORK

WITHHOLDING AND WITHDRAWING LIFE-SUSTAINING TREATMENT

PROVIDING PALLIATIVE TREATMENTS THAT MAY HAVE FATAL SIDE EFFECTS

EUTHANASIA

PHYSICIAN-ASSISTED SUICIDE

CONCLUSIONS

REFERENCES

EFFORTS TO COPE WITH DEATH AND PROVIDE CARE FOR THE DYING

Chapter 3 - HOPE

EDITORS’ INTRODUCTION

Chapter 4 - THE NATURE OF SUFFERING AND THE GOALS OF MEDICINE

EDITORS’ INTRODUCTION

“PERSON” IS NOT “MIND”

AN IMPENDING DESTRUCTION OF PERSON

A SIMPLIFIED DESCRIPTION OF THE PERSON

THE NATURE OF SUFFERING

THE AMELIORATION OF SUFFERING

WHEN SUFFERING CONTINUES

REFERENCES

AUTHOR’S ACKNOWLEDGMENTS

Chapter 5 - THE NATURE OF SUFFERING AND THE GOALS OF NURSING

EDITORS’ INTRODUCTION

CASSELL’S FOUNDATIONAL WORK ON THE NATURE OF SUFFERING

THE NEED FOR A UNIQUE ANALYSIS OF NURSING AND SUFFERING

METHODS USED FOR THIS WORK

THE UNIQUE RELATIONSHIP OF THE PATIENT AND NURSE

THE CONTEXT OF CANCER

SUFFERING IN CANCER SURVIVORSHIP

SUFFERING IN ADVANCED CANCER

THE NATURE OF SUFFERING AND THE GOALS OF NURSING

REFERENCES

Chapter 6 - DEATH: “THE DISTINGUISHED THING”

EDITOR’S INTRODUCTION

Chapter 7 - ACCESS TO HOSPICE CARE: EXPANDING BOUNDARIES, OVERCOMING BARRIERS

EDITORS’ INTRODUCTION

CHALLENGES OF END-OF-LIFE SUFFERING

CHARACTERISTICS OF HOSPICE VALUED BY CONSUMERS

APPROACHING JUST ACCESS: RECOMMENDATIONS

SOCIAL, LEGAL, AND ETHICAL ISSUES

Chapter 8 - THE HEALTH CARE PROXY AND THE LIVING WILL

EDITORS’ INTRODUCTION

HISTORICAL CONTEXT

ADDRESSING THE LIMITATIONS OF THE LIVING WILL

THE MOVE TO DESIGNATE HEALTH CARE PROXIES

IMPLEMENTING LAWS REGARDING HEALTH CARE PROXIES

ADDING TO THE DOCUMENT DESIGNATING A PROXY

LIMITS OF THE CONCEPT OF THE HEALTH CARE PROXY

THE RESPONSIBILITY OF PHYSICIANS

APPENDIX: A MODEL HEALTH CARE PROXY FOR USE IN MASSACHUSETTS

REFERENCES

Chapter 9 - TERRI SCHIAVO

EDITORS’ INTRODUCTION

REFERENCES

RESEARCH INTO END-OF-LIFE CARE

Chapter 10 - A CONTROLLED TRIAL TO IMPROVE CARE FOR SERIOUSLY ILL HOSPITALIZED PATIENTS

EDITORS’ INTRODUCTION

METHODS

RESULTS

COMMENT

REFERENCES

ACKNOWLEDGMENTS

Chapter 11 - FACTORS CONSIDERED IMPORTANT AT THE END OF LIFE BY PATIENTS, ...

EDITORS’ INTRODUCTION

METHODS

RESULTS

COMMENT

CONCLUSIONS

REFERENCES

FUNDING/SUPPORT

DISCLAIMER

ACKNOWLEDGMENT

Chapter 12 - USE OF HOSPITALS, PHYSICIAN VISITS, AND HOSPICE CARE DURING LAST ...

EDITORS’ INTRODUCTION

INTRODUCTION

METHODS

DISCUSSION

REFERENCES

ETHICAL APPROVAL

CONTRIBUTORS

FUNDING

COMPETING INTERESTS

Chapter 13 - FAMILY PERSPECTIVES ON END-OF-LIFE CARE AT THE LAST PLACE OF CARE

EDITORS’ INTRODUCTION

METHODS

RESULTS

COMMENT

REFERENCES

CORRESPONDING AUTHOR AND REPRINTS

AUTHOR CONTRIBUTIONS

STUDY CONCEPT AND DESIGN

ACQUISITION OF DATA

ANALYSIS AND INTERPRETATION OF DATA

DRAFTING OF THE MANUSCRIPT

CRITICAL REVISION OF THE MANUSCRIPT FOR IMPORTANT INTELLECTUAL CONTENT

STATISTICAL EXPERTISE

OBTAINED FUNDING

ADMINISTRATIVE, TECHNICAL, OR MATERIAL SUPPORT

STUDY SUPERVISION

FUNDING/SUPPORT

ROLE OF SPONSOR

DISCLAIMER

ACKNOWLEDGMENT

AUTHOR AFFILIATIONS

PALLIATIVE CARE

Chapter 14 - THE TREATMENT OF CANCER PAIN

EDITORS’ INTRODUCTION

EPIDEMIOLOGY

TYPES OF PAIN

MANAGEMENT OF CANCER PAIN

THERAPEUTIC APPROACHES

SUPPORTIVE CARE

SUMMARY

REFERENCES

ACKNOWLEDGMENTS

Chapter 15 - RESPONDING TO INTRACTABLE TERMINAL SUFFERING

EDITORS’ INTRODUCTION

CASE PRESENTATION

THE CLINICAL PROBLEM

DEFINITION OF THE PRACTICES

MORAL AND LEGAL STATUS

CLINICAL GUIDELINES

CLINICAL PRACTICALITIES

CONCLUSION

REFERENCES

THE AUTHORS AND MEMBERS AND STAFF OF THE ACP-ASIM END-OF-LIFE CARE CONSENSUS PANEL

GRANT SUPPORT

Chapter 16 - RESPONSE TO QUILL AND BYOCK, “RESPONDING TO INTRACTABLE TERMINAL SUFFERING”

EDITORS’ INTRODUCTION

REFERENCES

Chapter 17 - CHALLENGES IN PALLIATIVE CARE

EDITORS’ INTRODUCTION

CHALLENGE I: COMMUNITY-RELATED CHALLENGES

CHALLENGE II. PATIENT-RELATED CHALLENGES

CHALLENGE III. FAMILY-RELATED CHALLENGES

CHALLENGE IV. CAREGIVER-RELATED CHALLENGES

Chapter 18 - OUTCOMES FROM A NATIONAL MULTISPECIALTY PALLIATIVE CARE ...

EDITORS’ INTRODUCTION

INTRODUCTION

METHODS

RESULTS

DISCUSSION

REFERENCES

ACKNOWLEDGMENTS

Chapter 19 - NEGOTIATING CROSS-CULTURAL ISSUES AT THE END OF LIFE: “YOU GOT TO ...

EDITORS’ INTRODUCTION

PERSPECTIVES

CULTURE AND MEDICAL CARE

PATIENT AUTONOMY: THE DOMINANT CULTURE, THE DOMINANT MODE

FINAL CHOICES BY AN ELDERLY AFRICAN AMERICAN COUPLE

FINAL CHOICES BY A CHINESE AMERICAN FAMILY

EVALUATING AND ADDRESSING CULTURAL ISSUES AT THE END OF LIFE

REFERENCES

Chapter 20 - VARIABILITY IN ACCESS TO HOSPITAL PALLIATIVE CARE IN THE UNITED STATES

EDITORS’ INTRODUCTION

INTRODUCTION

METHODS

RESULTS

DISCUSSION

CONCLUSION

ADDENDUM

REFERENCES

ACKNOWLEDGMENTS

AUTHOR DISCLOSURE STATEMENT

Chapter 21 - DO PALLIATIVE CONSULTATIONS IMPROVE PATIENT OUTCOMES?

EDITORS’ INTRODUCTION

METHODS

RESULTS

DISCUSSION

REFERENCES

ACKNOWLEDGMENTS

CONFLICT OF INTEREST

AUTHOR CONTRIBUTIONS

SPONSOR’S ROLE

Chapter 22 - COST SAVINGS ASSOCIATED WITH U.S. HOSPITAL PALLIATIVE CARE ...

EDITORS’ INTRODUCTION

METHODS

RESULTS

COMMENT

CONCLUSIONS

REFERENCES

CORRESPONDENCE

AUTHOR CONTRIBUTIONS

STUDY CONCEPT AND DESIGN

ACQUISITION OF DATA

ANALYSIS AND INTERPRETATION OF DATA

DRAFTING OF THE MANUSCRIPT

CRITICAL REVISION OF THE MANUSCRIPT FOR IMPORTANT INTELLECTUAL CONTENT

STATISTICAL ANALYSIS

OBTAINED FUNDING

ADMINISTRATIVE, TECHNICAL, AND MATERIAL SUPPORT

STUDY SUPERVISION

THE PALLIATIVE CARE LEADERSHIP CENTERS’ OUTCOMES GROUP

FINANCIAL DISCLOSURE

FUNDING/SUPPORT

CARE GIVING

Chapter 23 - THE LONELINESS OF THE LONG-TERM CARE GIVER

EDITORS’ INTRODUCTION

REFERENCES

Chapter 24 - UNDERSTANDING ECONOMIC AND OTHER BURDENS OF TERMINAL ILLNESS: ...

EDITORS’ INTRODUCTION

METHODS

RESULTS

DISCUSSION

REFERENCES

ACKNOWLEDGMENTS

GRANT SUPPORT

CONCEPTION AND DESIGN

ANALYSIS AND INTERPRETATION OF THE DATA

DRAFTING OF THE ARTICLE

CRITICAL REVISION OF THE ARTICLE FOR IMPORTANT INTELLECTUAL CONTENT

FINAL APPROVAL OF THE ARTICLE

STATISTICAL EXPERTISE

OBTAINING OF FUNDING

ADMINISTRATIVE, TECHNICAL, OR LOGISTIC SUPPORT

COLLECTION AND ASSEMBLY OF DATA

THE ENDS OF MEDICINE AND SOCIETY

Chapter 25 - FINDING OUR WAY

EDITORS’ INTRODUCTION

REFERENCES

THE EDITORS

Index

Copyright © 2010 by the Robert Wood Johnson Foundation, Route One and College Road East, Princeton, New Jersey 08543

Published by Jossey-Bass A Wiley Imprint 989 Market Street, San Francisco, CA 94103-1741—www.josseybass.com

With the exception of “The Development, Status, and Future of Palliative Care” by Diane E. Meier, no part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, scanning, or otherwise, except as permitted under Section 107 or 108 of the 1976 United States Copyright Act, without either the prior written permission of the publisher, or authorization through payment of the appropriate per-copy fee to the Copyright Clearance Center, Inc., 222 Rosewood Drive, Danvers, MA 01923, 978-750-8400, fax [phone], or on the Web at www.copyright.com. Requests to the publisher for permission should be addressed to the Permissions Department, John Wiley & Sons, Inc., 111 River Street, Hoboken, NJ 07030, 201-748-6011, fax [phone], or online at www.wiley.com/go/permissions.

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Library of Congress Cataloging-in-Publication Data

p. ; cm.—(Robert Wood Johnson Foundation series on health policy)

Articles previously published in various sources.

Includes bibliographical references and index.

ISBN 978-0-470-52717-7 (pbk.)

1. Palliative treatment. I. Meier, Diane E. II. Isaacs, Stephen L. III. Hughes, Robert G., Ph. D. IV. Series: Robert Wood Johnson Foundation series on health policy.

[DNLM: 1. Palliative Care-trends-United States-Collected Works. 2. Patient Care-ethics- United States-Collected Works. 3. Hospice Care-United States-Collected Works. 4. Terminal Care-United States-Collected Works. WB 310 T772 2009]

R726.8.T73 2009

616′.029-dc22

2009026290

PB Printing

FOREWORD

In the late 1970s and early 1980s, when I was a physician in training, the field of palliative care did not exist. More often than not, a very sick or dying patient was viewed as a failure—a failure of technology and know-how to cure disease, or at least to extend life. Too often I observed one of two equally inadequate responses to this perceived failure: apply more technology, more intensively, or withdraw completely, physically and emotionally. Performing heroic measures—chemotherapy, surgery, artificial life support—even when there was no hope for cure or significantly prolonging life was the standard of care.

Between 1989 and 1994, the Robert Wood Johnson Foundation funded a large study called SUPPORT—the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment—to improve the care given to seriously ill hospitalized patients by having patients and their loved ones discuss their wishes for treatment (or lack of treatment) with specially trained nurses, who would relay that information to the physicians and nurses in charge of the patients’ care. The evaluation of SUPPORT showed that despite the program’s work to improve communication among patients, family members, and those entrusted with their care, all too often these patients were subjected to aggressive life-prolonging treatment and spent their last days and weeks in significant pain and discomfort.

The failure of SUPPORT led the Robert Wood Johnson Foundation to embark on a multiyear, multifaceted effort to improve the care given to people with serious illness—an effort that was undertaken in loose collaboration with the Open Society Institute’s Project on Death in America.

Together, the two foundations were instrumental in nurturing the field of palliative care, which is the subject of this book, the fourth in a series that highlights and examines fields that the Robert Wood Johnson Foundation has nurtured over many years. Transforming Palliative Care is about the field itself, not the Foundation’s role in developing it. Like its predecessor volumes in The Robert Wood Johnson Foundation Health Policy Series—Generalist Medicine and the U.S. Health System (2004), School Health Services and Programs (2006), and Tobacco Control Policy (2006), Palliative Care: Transforming the Care of Serious Illness begins with a comprehensive review of the field. We are honored that Diane E. Meier, who co-edited this volume with Stephen L. Isaacs and Robert G. Hughes, wrote the introductory chapter. Dr. Meier’s leadership in and contribution to the field of palliative care were recognized by her selection as a recipient of a 2008 MacArthur Foundation “genius award.” Dr. Meier’s chapter is followed by reprints of twenty-five of the most important or influential articles in the field, written by its leading practitioners and analysts.

The combination of Dr. Meier’s review chapter and the reprints of key articles from books and professional journals will give readers the wherewithal to understand the evolution of palliative care and the movement for better care of the seriously ill. We hope that the wisdom contained in these pages will inform academics, students, and the American public, and that it will serve to guide policy makers in developing meaningful approaches that will lead to better bedside care for all Americans.

Risa Lavizzo-Mourey, M.D., M.B.A.President and CEOThe Robert Wood Johnson FoundationPrinceton, New JerseyMay 2009

EDITORS’INTRODUCTION

This book is intended as an introduction and guide to palliative care and, more broadly, to the medical care of the seriously ill. Although concerns about the suffering and pain that seriously ill people and their families endure is not new—the hospice movement in the United States can be dated to the mid-1960s, and Elizabeth Kübler-Ross’s seminal book, On Death and Dying, appeared in 1969—it was during the 1980s and 1990s that the American public began to pay serious attention. This attention has, if anything, increased during the 2000s.

Some of the heightened attention is related, no doubt, to demographics. More and more middle-aged children have been forced to watch helplessly as their parents undergo fragmented and often incomprehensible medical care from multiple specialists who communicate neither with each other nor with the patients and families they are serving. After years of roller-coaster hospitalizations, more than half of Americans still die among strangers, hooked up to a variety of machines in a hospital setting. The public’s attention has been riveted by high-profile legal cases, such as that of Terry Schiavo, by the intense controversy surrounding Dr. Jack Kevorkian, and by the legalization of physician-assisted suicide in the states of Oregon and Washington.

Away from the public spotlight, physicians, nurses, social workers, ethicists, attorneys, and laypeople have been working to make sure that people with serious illnesses are able to receive the kind of care that they want and the kind of relief from pain that they need—palliative care, in short. Those practicing palliative care serve the most ancient of goals in the practice of medicine—the relief of human suffering. Palliative care provides comfort and relief of pain to seriously ill individuals in a variety of settings and at various stages of illness. Hospice, one form of palliative care, provides comfort and pain relief specifically for people who are clearly dying, whereas palliative care in general provides comfort and pain relief for anyone with a serious illness regardless of their prognosis, whether they are expected to be cured or to live for years with a chronic disease. Palliative care is offered at the same time as medical care aimed at cure or life prolongation and is appropriate for all patients in need of it, whether they will live for years or days.

Palliative care has entered the mainstream of medical practice. More than half of U.S. hospitals reported a palliative care program in 2006, and many more programs are in the planning stages. Even so, as with other so-called cognitive specialties, it faces an uphill battle, due in part to the federal government’s and private insurers’ unwillingness to pay sufficiently for the kinds of medical care and social services needed by seriously ill people (many of whom are elderly and frail and have multiple chronic conditions). As a consequence of such inequities in reimbursement, fewer than 2 percent of graduating U.S. medical students choose to practice in a primary care (cognitive) specialty, and most leave their training with hundreds of thousands of dollars in educational debt, virtually forcing them to pursue training in procedural subspecialties that are much more generously reimbursed by payers. The growth of the palliative care field is limited by the difficulty of recruiting and retaining the necessary workforce under such adverse financial incentives.

Nonetheless, the aging of the population makes it unavoidable that health professionals will spend more of their time caring for older people, many of whom suffer from multiple chronic conditions, and the sickest of whom require palliative care. Moreover, because palliative care improves the quality of care and reduces costs for a key population of patients—those with serious and complex illness who, while accounting for under 10 percent of patients, drive more than two-thirds of health care spending—it ought to be a central part of the solution to America’s health care crisis. For these reasons, palliative care—as part of health care reform—is almost certain to rise higher on the nation’s health policy agenda.

The initial chapter, by Diane E. Meier, M.D., offers a comprehensive review of the field of palliative care, covering, among other topics, the history of care of seriously ill people; the religious, legal, and ethical issues; the evolution of views regarding relief from pain; the growth and current state of the field of palliative care; and the challenges confronting it.

In selecting twenty-five of the most influential or important articles to reprint—out of literally hundreds of superb pieces that the field has generated—the editors faced what proved to be a difficult, if not impossible, task. In making our selection, we looked for “classic” articles, such as Eric J. Cassell’s “The Nature of Suffering and the Goals of Medicine”; pieces written by the giants who founded the field, such as Elisabeth Kübler-Ross; and pieces that captured the most critical issues in palliative care. In making the selections, we first asked many of the field’s leading experts—listed in the acknowledgments—what they considered to be the most important, influential articles in the field. We owe each of them an enormous debt of gratitude for their thoughtful responses.

After receiving the guidance of these experts, we turned to the process of winnowing the reprint list down to twenty-five, which is all that space would allow. We are fully cognizant that a number of important articles were omitted, and that three different editors would have compiled a different list. Nonetheless, we believe that the articles we have chosen to reprint offer a reasonable selection of the most important, influential articles on palliative care.

Like Dr. Risa Lavizzo-Mourey, who wrote the foreword, we too hope that this book will inform the debate about health reform and efforts to improve the delivery of long-term care to seniors. The aging of the population, the increasing number of people suffering from chronic illness, the staggering cost of medical care, the great disparities in health care, and, simply, the human considerations in caring for seriously ill people make the issues addressed in this book of the highest priority.

Diane E. Meier, M.D.Stephen L. Isaacs, J.D.Robert G. Hughes, Ph.D.Editors

ACKNOWLEDGMENTS

We wish to express our gratitude to the many people whose counsel helped shape this book.

We asked some of the nation’s leading experts in palliative care what they considered to be the most important issues in the field and what articles they felt had been the most significant or influential. Their collective judgment guided our thinking, and we are grateful to each of the individuals listed below for their time and thoughtfulness:

• George J. Annas

• Robert M. Arnold

• Anthony L. Back

• Andrew Billings

• Margaret L. Campbell

• Arthur L. Caplan

• Christine K. Cassel

• Nicholas A. Christakis

• Constance M. Dahlin

• Betty R. Ferrell

• Kathleen M. Foley

• Rosemary Gibson

• Bruce Jennings

• Sharon R. Kaufman

• Jean S. Kutner

• Joanne Lynn

• Stephen J. McPhee

• Alan Meisel

• Sean Morrison

• Balfour M. Mount

• Chuck Mowll

• Steven Z. Pantilat

• Holly G. Prigerson

• Timothy E. Quill

• Steven A. Schroeder

• Thomas J. Smith

• Sharyn M. Sutton

• James A. Tulsky

• Charles F. von Gunten

• David E. Weissman

• Joanne Wolfe

We are indebted to Kathleen Foley and Christine Cassel, who reviewed the article that begins the book. Their comments were extremely helpful.

We would like to recognize the contribution of staff members at the Robert Wood Johnson Foundation. Particular thanks are due to Rosemary Gibson, who as a senior program officer at the Foundation played a key role in shaping and overseeing its end-of-life programming and who reviewed the introductory chapter. We are grateful as well to David Morse for his oversight of the Robert Wood Johnson Foundation Health Policy Series and his invaluable guidance on this book; Risa Lavizzo-Mourey for her many thoughtful ideas and consistent encouragement; Roshani Desai for her fine work organizing the collaborative efforts of the three editors; Hope Woodhead and Barbara Sherwood for handling the distribution; and Hinda Feige Greenberg, Mary Beth Kren, and Barbara Sergeant for conducting literature reviews and obtaining articles for the editors to consider as reprints.

We would also like to thank Pat Crow for copyediting the article by Dr. Meier, Carolyn Shea for fact checking it, Lauren MacIntyre for entering editorial changes, and Shirley Tiangsing for transferring printed material into electronic form. At Jossey-Bass, we acknowledge the efforts of Andy Pasternack, Kelsey McGee, and Seth Schwartz. At the Center to Advance Palliative Care, we acknowledge the design and communications guidance of Lisa Morgan. Lastly, we express our appreciation to Elizabeth Dawson, research and editorial associate at Health Policy Associates, for her excellent work overseeing the editorial and production process.

D.E.M.S.L.I.R.G.H.

REVIEW OF THE PALLIATIVE CARE FIELD

THE DEVELOPMENT, STATUS, AND FUTURE OF PALLIATIVE CARE

DIANE E. MEIER, M.D.

The constants of the human condition are birth and death. No research, no new technology, no prayer, and no divine intervention has ever changed these defining characteristics of our species, and nothing we can foresee is likely to change them. But the nature of the experience—how we are born, how we die—has changed profoundly in the last several hundred years. For most of human history, death was a near random event, due to injury, infection, starvation, or childbirth. Humans were at least as likely to die during birth, infancy, childhood, or young adulthood as they were during middle age or old age. The meaning and the ritual attached to illness and death were predicated on this fact—death was common and unpredictable; it afflicted old and young and rich and poor alike; and it played a central role in the life of the community and the family.

Between 1900 and 2000, life expectancy in the United States rose from forty-seven to seventy-seven years—equivalent to the gain in longevity between the Stone Age, more than ten thousand years ago, and 1900. A gain of this magnitude in the relatively short evolutionary time frame of a century has had dramatic effects on the human experience of illness and dying and death. Where illness and death were once central and routine community experiences, with rituals designed to heal and to reintegrate the bereaved into new roles and new relationships, modern medicine and technological innovations have removed them from their place of gravity at the close of each life and have made them seem to be accidental and almost unseemly failures, associated with the belief that they could and should have been prevented.

Yet in the last two decades Americans have begun to recognize the limitations of technology and modern medicine in meeting the needs of the chronically and seriously ill, and also to fundamentally restructure the care that people require during the last years of their lives. These developments have spawned a new field of medicine called palliative care—from the Latin palliare, to clothe. Palliative care focuses on the relief of suffering for patients with serious and complex illness and tries to ensure the best possible quality of life for them and their family members. It is delivered at the same time as other appropriate curative and life-prolonging treatments and is not limited to the terminally ill. In this respect, it is not limited to hospice care, a component of palliative care focused on the care of the terminally ill who have opted to stop life-prolonging treatments.

Palliative care has grown rapidly in the United States in recent years and is now poised to become a universally available approach to meeting the needs of the country’s sickest and most vulnerable patients. It is a central part of the solution to America’s health care crisis, since it improves the quality of care and reduces costs for a key population—those with serious, complex illnesses who, while they number less than 10 percent of patients, account for more than two-thirds of health care spending.

This chapter examines the field of palliative care. It begins by exploring why the care of seriously ill patients has become such an important issue in the United States, and why the current health care system (or lack of a system) is unable to cope with it. It then looks at past efforts to provide care for dying people, the way that treatment of pain has evolved, and the growth of hospice care. This is followed by an analysis of legal, social, and political concerns and of the research that has highlighted the problems and offered potential solutions, many of which have been tested and launched by private philanthropy. Finally, it reports on the state of palliative care in America and offers some thoughts on its future.

CARE OF THE SERIOUSLY ILL: WHY IS IT AN IMPORTANT ISSUE?

The unprecedented growth in the numbers and the needs of the chronically ill, especially the elderly; the availability and widespread use of costly medical technologies that may prolong life without restoring health or functional independence; exponential cost increases due both to larger numbers of persons turning to the health care system for help and to per-capita increases in health care spending attributable to technological advances and overuse; the crippling impact of employer-based health insurance on the American economy and the lack of government control over rising drug and device pricing; the failure to recognize and treat the pain and other distressing symptoms experienced by seriously ill people; and the consequent widespread dissatisfaction with and confusion about the medical care system—all form the context and justification for attention to medical care of the seriously ill and those approaching the end of life and the rapid recent growth of the field of palliative care.

America Is Aging, and More People Are Living with and Suffering from Years of Chronic Illness

From the standpoint of sheer numbers, the population of the United States is aging, and the odds of living a long life and dying during old age are far better than they were a hundred years ago. The average baby born in the United States today can expect to live to age seventy-eight, despite the fact that the United States is ranked forty-second in the world in life expectancy at birth, behind Jordan, Guam, and the Cayman islands.1 If a man survives to age seventy-five, he can expect to live ten years longer, on average; a woman living to age seventy-five can expect to live twelve years longer. As a result of this dramatic increase in longevity, about 20 percent of the American population will be over age sixty-five by 2030, as compared to less than 5 percent in 1900—a demographic shift unprecedented in human history, and one for which our society is unprepared. While many people died of acute infectious illness a century ago and for millennia before then, today the leading causes of death are chronic degenerative diseases such as heart failure, emphysema, stroke, dementia, and cancer—diseases with which people may live for years, and sometimes for decades, before they die.

During the twentieth century, the location of care for the dying shifted away from the home and into hospitals and nursing homes—institutional settings where more than 70 percent of American citizens now die. The reasons for this shift are complex and include financial incentives built into the health care system that favor institutional death as well as the burden that long-term chronic care of functionally dependent loved ones places on families.

In addition, the successes of modern public health and medical care have created an expectation that all illness can be treated, if not cured, and that ipso facto, with enough research, death itself is preventable. Hence family members’ worry that if they had just gotten another opinion, searched a little harder on the Internet, or pushed for an experimental treatment, they could have forestalled decline and death. This anxiety is part of the reason for overuse of health care services, and for costly and burdensome medical care near life’s end.

The Impact of Public Health Measures and Modern Medicine on Longevity

In the mid-nineteenth century, scientists began to develop the germ theory of disease based on observations of epidemic infections from unclean drinking water. The subsequent separation of drinking water from sewage led to dramatically reduced infant, child, and maternal mortality and a gain in life expectancy at birth from under fifty years at the start of the twentieth century to nearly eighty years at present. A smaller portion of the last century’s dramatic thirty-year gain in life span can be attributed to the discovery of antibiotics and the widespread use of vaccination during World War II. Most of the century’s gain in life expectancy predates the recent rise in preventive and high-technology medicine, such as the control of blood pressure and smoking and the effective treatment of heart disease, stroke, and cancer (see Figure 1).

Fully 75 percent of the gain in life expectancy occurring during the twentieth century is due to decreased mortality for persons under the age of forty, resulting in a much higher likelihood of living to old age. This large gain is both the context for and a contributor to our present challenge—how to understand the meaning of serious illness and death when it comes, and what our society owes us when we reach this stage in our lives.

FIGURE 1.Median Life Expectancy in Years.

Modern medical care and technology have also contributed to longevity in the United States. A recent study attributed roughly half of the 50 percent reduction in death from coronary heart disease during the last two decades in the United States to medical therapies and half to reductions in risk factors such as control of lipids, hypertension, and smoking.2

Consequences of an Aging Society The successes of public health and modern medical care have led to unprecedented growth in the number of older adults. The current generation of older people is healthier and less disabled than its predecessors, with additional gains in active life expectancy due to public health and biomedical research leading to new treatments for, and later onset of, chronic diseases.

But although the proportion of people with chronic disability is declining and more people are living longer and better, the sheer number of the elderly with chronic disability (seventy-seven million people will be over age sixty-five by 2040) means that an unprecedented number will experience prolonged functional dependency and frailty before they die. Some 57 percent of Americans age eighty and older report a severe disability.3 The probability of needing help from another person to get through the day because of functional dependency increases with age; more than 40 percent of persons over sixty-five report at least one functional limitation, and more than 70 percent of those over age eighty require personal assistance with one or more of their everyday activities.4 This functional impairment is due in great part to the rising prevalence of cognitive impairment after age sixty-five: more than 13 percent of the over-sixty-five population and 42 percent of those eighty-five or above have Alzheimer’s disease, the most common cause of dementia (prevalence is even higher if vascular dementia is included), a number projected to rise by more than 50 percent by 2030 with the aging of the baby boom generation. Not surprisingly, and as an unintended consequence of modern medical successes, as death rates from heart disease, cancer, and stroke have declined in the last few years, Alzheimer’s as a cause of death has skyrocketed, increasing by 33 percent between 2000 and 2004.

Caring for Seriously Ill People Is Very Costly

In 2007, health care spending in the United States reached $2.3 trillion (16.9 percent of the nation’s gross domestic production, or GDP), and it is expected to reach $4.2 trillion by 2016 (20 percent of GDP).5 Medicare spending (government health insurance for those over sixty-five and the disabled) is growing exponentially in tandem with the numbers, needs, and cost of care of its beneficiaries (see Figure 2).

Although nearly forty-six million Americans are uninsured, the United States spends roughly twice as much per person as other industrialized nations (more than $7,500 for every American, man, woman, and child), and those countries provide health insurance to all their citizens, and do so at under 11 percent of GDP (see Figure 3).

FIGURE 2.Growth in Medicare Expenditures, 1970-2015.

Source: The Commonwealth Fund; Data from 2006 Medicare Trustees’ Report. Reprinted with permission.

Despite our high expenditures, a 2008 Commonwealth Fund survey of chronically ill adults in Australia, Canada, France, the Netherlands, New Zealand, the United Kingdom, and the United States found that U.S. patients are more likely to forgo needed care because of costs (54 percent), run into problems with care coordination (34 percent), and experience a significant medical error (34 percent).6

The primary factors driving these high costs are both intensity and pricing of service delivery—the United States uses more of the newest (and costliest) technologies and delivers various invasive procedures (such as magnetic resonance imaging and coronary bypass procedures) at a rate several times higher than other developed nations.

In addition, prices for medical care services in the United States are significantly higher than those in other countries (see Figure 4), and Americans spend five times as much per person ($486) as the OECD (Organization for Economic Cooperation and Development) median ($74) on health insurance and administrative costs.7

Individuals with five or more chronic illnesses are the largest consumers of health care and account for two-thirds of all Medicare spending. This patient population represents about 20 percent of all Medicare beneficiaries and is the group most likely to benefit from palliative care services (see Figure 5).

The costs associated with the number and expense of new life-prolonging technologies (such as kidney, heart, lung, and liver transplantation, implantable cardiac defibrillators, drug-eluting stents for coronary artery disease, ventricular assist devices, and new drugs to battle cancer) have risen dramatically. Medical ethicist Daniel Callahan argues that the unquestioning commitment to medical progress, regardless of cost and no matter how marginal the benefit, threatens to swamp other social priorities, such as education, safe roads, clean air, and universal access to health care.8 Despite the acknowledged critical nature of the problem, little or no social consensus exists on the distribution of our finite resources among social goods, or on the place of death as a necessary and appropriate part of a healthy life in a healthy society.

FIGURE 3.International Comparison of Spending on Health, 1980-2006.

Source: The Commonwealth Fund; Data from OECD Health Data 2008 (June 2008). Reprinted with permission.

FIGURE 4.Magnetic Resonance Imaging (MRI) Units per Million Population, 2006.

Source: The Commonwealth Fund; Data from OECD Health Data 2008 (June 2008). Reprinted with permission.

FIGURE 5.Two-Thirds of Medicare Spending Is for People with Five or More Chronic Conditions.

Source: The Commonwealth Fund; from G. Anderson and J. Horvath, Chronic Conditions: Making the Case for Ongoing Care (Baltimore, MD: Partnership for Solutions, December 2002). Reprinted with permission.

The fact is that these numbers pose a threat to American economic competitiveness in the world market, and the current world financial crisis may help create the social consensus necessary for a reexamination of the current model of health insurance in the United States and also of the built-in financial incentives favoring hospitalization, procedural care, and more specialist intervention in the system.

Dissatisfaction with Care of the Seriously Ill

Despite uniquely high per-capita expenditures, Americans with serious illness, their families, and their doctors and nurses are not satisfied with the care system. According to the 2006 Health Confidence Survey, dissatisfaction with the health care system, specifically how much it costs, has doubled since 1998, with 28 percent of respondents rating it fair and 31 percent rating it poor because of rapid growth in out-of-pocket expenses.9 Of Americans responding to a national representative survey conducted by the Commonwealth Fund, 46 percent called for fundamental change and 30 percent for a complete rebuilding of the health care system; 42 percent reported experiencing inefficient, poorly coordinated, or unsafe care.10 Among family members of Medicare decedents, substantial percentages reported inadequately treated pain (24 percent), inadequate emotional support (50 percent), and poor communication from physicians (30 percent); interestingly, the hospice care given at home was ranked excellent by more than 70 percent, compared with fewer than 50 percent of those whose family members had died in a hospital or a nursing home.11

EFFORTS TO COPE WITH DEATH AND PROVIDE CARE FOR THE DYING

I don’t want to achieve immortality through my work.I want to achieve it by not dying.

Woody Allen

A Brief History

In The Hour of Our Death, published in 1981, author Philippe Ariès described death and the history of Western attitudes toward it as both a communal and an individual act, associated with the ritual and ceremony of any major life milestone.12 These rituals have been transformed in the last hundred years by the simultaneous decline of religious faith in many Western nations and the advent of the scientific revolution. The key components of this rite of passage are the individual’s role in the acceptance of his coming death; the opportunity to say goodbye; and the period of mourning and bereavement. Ariès divides his study into four overlapping historical periods: “The Tame Death,” “The Death of the Self,” “The Death of the Other,” and “The Invisible Death.”

The Tame Death roughly corresponds with pre-Christian through the early Middle Ages. Death was central, routine, and unpredictable and was tamed through social rituals and codes of behavior. From earliest recorded history, death was a central and common part of the life and rites of the community—“rites in the bedroom or those of the oldest liturgy express the conviction that the life of a man is not an individual destiny but a link in an unbroken chain, the biological continuation of a family or a line that begins with Adam and includes the whole human race. The community was weakened by the loss of one of its members ... it had to recover its strength and unity by means of ceremonies ... death was not a personal drama but an ordeal for the community, which was responsible for maintaining the continuity of the race.”

The Death of the Self begins in the Middle Ages, when mendicant Christian orders worked to convert a quasi-pagan population, with a corresponding rise in individuals’ fears about their own death and an afterlife of punishment for sin. A change in attitude developed with the rise in the sense of individual fate as opposed to collective destiny—an individual destiny in an afterlife that could be secured by good behavior, prayer, simony (purchase of divine favor), and control of what happens after death through the use of wills and testaments.

The Death of the Other corresponds to the subsequent (post-Middle Ages) rise in the centrality of the family and a few intimate relationships, and the associated Romantic Movement (the deathbed scene, ars moriendi [the art of dying], weeping, drama). After the Middle Ages, the rise of intimate family relationships replaced the community as the primary seat of loyalty and personal survival. The rise of the family, with the associated realization that there is good and bad in each person, reduced both the conceivability and the acceptability of punishment for sin through hell and eternal damnation and encouraged a vision of permanent reunion with loved ones after death.

Arguing that death has been banished as an unacceptable and unendurable truth in our own century, Ariès describes the Invisible Death, our current phase, as a period where death is unconsciously or theoretically believed to be avoidable with enough investment in research—an expectation strengthened by the successes of public health and modern medicine in allowing, for the first time in human history, most people in Western societies to live to old age. If the presumption is that science can defeat death, each death that does occur requires explanation, is something that could theoretically have been prevented, and hence must reflect a failure—a failure of the family to find the right doctor; of the patient to take proper care of himself or herself; of the doctors to know the latest protocols; of the hospital to prevent the unpreventable; of society to invest adequately in research. Despite the fact that over 80 percent of Americans report a religious affiliation, someone or something under human control must be to blame if death is preventable.

If death is avoidable and therefore a failure, it is unsuitable for everyday life—stigmatized, hidden, and avoided in polite conversation. Since each of us still dies, each person (and the family) may come to experience his or her own dying and death as a mistake, something that could have been prevented, a personal failing, or someone else’s fault—in a word, wrong.

Combining the stigma of death with the widely held belief that modern medicine and hospitals can perform miracles in the battle against death, the hospital and the nursing home have become the dominant sites for gravely ill, dying people (more than 70 percent of deaths in the United States occur in an institution). The health care institution offers families a break from the work of caring for a seriously ill person, a place to hide from prying eyes, and a respite from the shame and failure implicit in the dying process. The hospital is believed to have the professionals and the technology necessary to defeat disease and keep death at bay. The modern ritual of death involves several prolonged stays in a hospital—often in an intensive-care unit. This ritual allows the family to say to their friends and neighbors, “We did everything possible, we got the best care possible;” to keep the concrete and physically distressing aspects of the illness at a controlled and safe distance; and to avoid being labeled as a friend of death because of the acceptance of death. The physician becomes the agent of his society—battling death is the raison d’être of modern medicine.

Tolstoy was among the first to write about the stigma of death in his great novella The Death of Ivan Ilych. Ilych, a middle-class government functionary, is dying of cancer, but no one tells him the truth. His doctors and family all talk around the illness with euphemism, and the patient, desperate for genuine human relationship, experienced even greater suffering due to their denial of death’s reality.

What tormented Ivan Ilych was the lie, this lie that for some reason they all accepted,that he was only sick and not dying, and that if he would only remain calm andtake care of himself, everything would be fine; whereas he knew very well thatno matter what was done the result would be only worse suffering and death. Hesuffered because no one was willing to admit what everyone, including himself,could see clearly. He suffered because they lied and forced him to take part inthis deception. This lie that was being told on the eve of his death, that degradedthe formidable and solemn act of his death ... had become horribly painful to IvanIlych.

Leo Tolstoy, “The Death of Ivan Ilych”13

Hiding from the indecency of death extends to the mourning process. By the mid-twentieth century, the traditional community mourning rituals and codes of behavior that not only reintegrated the bereaved back into the world of the living but that also helped the group recover from the threat of death and loss in their midst—wearing black, avoiding social events—had all but disappeared in the United States and other developed nations. The loss of these codes and rituals of bereavement in the last two centuries has left us with little protection from the terror of nature and death. Hence the modern tendency to repress references to death and to suppress evidence of mourning. As Geoffrey Gorer wrote in Death, Grief, and Mourning in Contemporary Britain:

At present death and mourning are treated with much the same prudery as the sexual impulses were a century ago ... Today it would seem to be believed, quite sincerely, that sensible rational men and women can keep their mourning under complete control by strength of will and character, so that it need be given no public expression, and, if indulged at all, in private, as furtively as if it were an analogue of masturbation.14

Not only have the dying person and the grieving survivor been effectively banished from mainstream society but the reality of death itself has become taboo. It is treated as a contagious disease, something to avoid and to protect one’s children from. Reaction against the stigma and the isolation of the dying that accompanied the view of death as somehow optional or preventable is the foundation of the hospice and, subsequently, palliative care movements in the United States.

Growth in the Use of Opioids for Treatment of Pain

Pain is a more terrible lord of mankind than even death himself.

Albert Schweitzer, 192215

It has no future but itself.

Emily Dickinson, 189616

Pope John Paul II has issued an apostolic letter on suffering in which he says physical, mental and moral pain pose a mystery that can lead to spiritual growth and salvation.

Kenneth A. Briggs, The New York Times, 1984

Through much of the nineteenth century, pain was viewed as God’s punishment for sin and a means of spiritual purification through suffering; it was felt to have healing power in and of itself. Invoking the biblical injunction “In sorrow, thou shalt bring forth children” (Genesis 3:16) as justification, some believed that the pain of childbirth was necessary to transform women into appropriately self-sacrificing mothers. Morphine was first isolated from crude opium in 1803, though opium and its derivatives had been used for millennia. Queen Victoria began using general anesthesia during childbirth in 1853. By the late 1880s, surgical anesthesia was widespread, and an increased demand for surgery transformed hospitals from charitable asylums for the poor and the dying into purveyors of cures and the relief of suffering from disease.

The neurological underpinnings of pain were first studied in the late 1800s, and by the mid-twentieth century pain was understood as the body’s warning to avoid injury. “The evolutionary purpose of pain was no longer to heal, to punish, or to ennoble, but to provide a mechanical warning of actual or potential damage to cells and tissues in a specific body area,” according to the noted pain researcher Raymond Houde.17 The twentieth century also saw the earliest efforts to measure and assess pain in humans, and to attempt quantitative study of the effectiveness of analgesics. Henry Knowles Beecher, at Harvard, wrote about the inextricable role of emotion in the experience of pain in 1959, and he, Raymond Houde, at Memorial Sloan-Kettering Cancer Center, and Cicely Saunders, at St. Christopher’s Hospice in London, conducted the fundamental studies of opioid analgesia that led to modern opioid pharmacotherapy. Modern opioid pharmacology includes listening to the patient as the best source of information about pain intensity and impact. “I found that I got the same answer from just asking the patient as I did by going through a long series of testing,” Houde said. It also includes keeping pain under steady control with scheduled dosing (rather than waiting for a pain crisis before offering analgesia) and having “rescue doses” available to relieve unpredictable or breakthrough pain.18

Perhaps few persons who are not physicians can realize the influence which long-continued and unendurable pain may have on both body and mind . . . Under such torments the temper changes, the most amiable grow irritable, the bravest soldier becomes a coward.

S. Weir Mitchell, M.D., 187219

Understanding that chronic pain is actually harmful to the organism, as opposed to merely an unpleasant side effect of disease, was recognized as early as the 1870s and was well established by the middle of the twentieth century. John C. Liebeskind, a noted pain researcher at UCLA, provided evidence that pain actually leads to measurable immunosuppression and associated increased risk of death from cancer and other diseases. In 1943, W. K. Livingston wrote in Pain Mechanisms, “Pain is a sensory experience that is subjective and individual; it frequently exceeds its protective function and becomes destructive... If such disturbances are permitted to continue, profound and perhaps unalterable organic changes may result in the affected part ... A vicious circle is thus created.”20

Chronic pain is a symptom of many conditions and affects 76.2 million Americans, more than diabetes, heart disease, and cancer combined. Pain is a significant national health problem and is the leading cause of disability, suffering, and impaired quality of life.21 It is the most common reason individuals seek medical care, accounting for up to 80 percent of doctor visits.22 More than 25 percent of people in the United States report having had a chronic pain condition at some point in their life,23 and the associated disability is a major liability for workers, employers, and society. More than 70 percent of cancer survivors have significant pain, and fewer than 50 percent of these report receiving adequate treatment.24

In hospitalized and seriously ill patients, pain has been associated with increased length of stay, longer recovery time, and poorer patient outcomes, all of which have implications for health care quality and cost.25 A study of the experience of 9,105 seriously ill patients at five major American teaching hospitals reported moderate to severe pain in half of conscious patients during the last three days of life.26

Both patients and physicians agree about the extent of the problem of untreated pain. In a 1993 survey, 88 percent of physicians treating cancer patients reported that their own training in pain management was fair to poor; and 86 percent admitted that their patients were undermedicated for pain.27 Racial minorities, the poor, patients with HIV-AIDS, women, and the elderly are all less likely than white males to receive appropriate pain treatment.28

Translation of the growing body of evidence that pain is bad for your health, and that relief of pain improves clinical outcomes, into routine clinical practice falls short. The multidisciplinary pain clinic has emerged as the standard of practice, utilizing a range of approaches including pharmacology, physical therapy, behavioral therapies, acupuncture, hypnosis, and family education. Many Americans cannot, however, get insurance coverage for modern comprehensive multidisciplinary pain programs, and this has reduced access to and availability of these services in many communities.29

DEBORAH’S STORY

Deborah, as I’ll call her, is a thirty-seven-year-old mother of three young children, a practicing psychotherapist, and a breast cancer survivor. Despite state-of-the-art treatment from the best oncologists in New York City, her cancer spread to her bones, causing progressive and severe pain. Her oncologists focused on administration of chemotherapy and suggested ibuprofen and Tylenol, neither of which helped. Her pain got so bad that she was unable to take care of her kids and had to stop going to work. She spent most of her time curled on her side in bed, since the pain was much worse if she moved. She has been to the emergency room twice for the pain, but the doctors there were willing to give her only six tablets of Tylenol with codeine. When these were gone, she left messages for her oncologist, but three days later she had not received a call back. In desperation, she called her obstetrician, who referred her to a palliative care doctor. Her sister and her husband got her to the appointment and she was begun on oral morphine liquid in the office, with dose adjustments until the pain was reduced from 10 out of a possible 10 to 5 out of a possible 10 (with 0 being no pain and 10 being the worst imaginable pain). She went home with instructions for around-the-clock and rescue doses of the analgesic. Within three days, her pain was down to 2 out of a possible 10, and she was able to return to her family and work responsibilities and continue her pursuit of effective treatments for her breast cancer. Deborah wonders how she got through her illness without this kind of help, and she thinks that every patient with cancer should have not only an oncologist but also a palliative care doctor to manage all aspects of their illness.

The Hospice Movement

Origins and Growth The term “hospice”—from the Latin hospitium, the same linguistic root as “hospitality”—denotes a place to host, receive, and entertain guests or strangers. The term can be traced to medieval times, when it referred to a place of shelter and rest for weary or ill travelers. The original hospices, from the fourth to eleventh centuries, were houses of rest and shelter for pilgrims and crusaders traveling to and from the Holy Land; these hospices were usually kept by religious orders.

The earliest hospitals and hospices were one entity, again based in the church. St. Bartholomew’s Hospital, in London, was founded in 1123 and became a secular hospital in 1546 “for the ayde and comforte of the poore, sykke, blynde, aged, and impotent persones beying not hable to helpe themselffs nor havyinh any place certeyn whereyn they may be lodged, cherysshed, or refreshed, tyll they be cured and holpen of theyre diseases and syknesse,” wrote a surgeon, in a letter to Henry the Eighth.30 During the eighteenth and nineteenth centuries, religious orders established hospices to care for the dying in France, Ireland, and London. One of these—St. Joseph’s Hospice for the Dying Poor, established by the Irish Sisters of Charity—was Cicely Saunders’s first exposure to hospice care.

The modern hospice movement began with a few middle-aged women determined to bring attention to the medical and emotional abandonment of the dying: Cicely Saunders in London, Florence Wald in New Haven, and Elisabeth Kübler-Ross in Chicago. Building on the grassroots work of volunteers and religious orders who stepped up to care for dying people, these three women together were able to bring professional and public attention to the societal abandonment of the dying and their families: Saunders through the establishment of St. Christopher’s Hospice in London and the conduct of research and education in the clinical setting; Wald, under Saunders’s tutelage, established the first American hospice, in Branford, Connecticut; and Kübler-Ross by writing the revolutionary On Death and Dying.31

Saunders, who died in 2005, was a nurse, a social worker, and a physician. She is the acknowledged founder of the modern hospice and palliative care movements. In 1967, she launched the modern hospice movement by founding St. Christopher’s Hospice. She mandated the inclusion of education and research as a core component of the mission of St. Christopher’s and was one of a few pioneering researchers in the effective management of pain with opioid analgesics. “It appears that many patients feel deserted by their doctors at the end. Ideally, the doctor should remain the centre of a team who work together to relieve where they cannot heal, to keep the patient’s own struggle within his compass, and to bring hope and consolation to the end,” she wrote.32

Saunders visited Yale University in 1963 and gave a lecture to medical students, nurses, social workers, and chaplains on the concept of specialized care for the dying. Her lecture included before-and-after photos of cancer patients and their families, showing dramatic differences after good symptom control. Upon the invitation of Florence Wald, then dean of Yale’s School of Nursing, Saunders returned to Yale as a visiting professor in 1965. In 1968 Wald took a sabbatical at St. Christopher’s, returning to America to initiate the modern American hospice movement.

The greatest fear of the dying and their families is the fear of pain. Sadly, this fear has often been justified. Terminal pain is frequently treated ineptly and the public myth that death from cancer involves unremitting distress is perpetuated. There are many reasons why terminal pain has been so poorly controlled. Until recently, the care of the dying has rarely been included in the training of doctors and nurses. With a few notable exceptions, medical and surgical textbooks have ignored the problems of pain control.

Cicely Saunders, 199533

After studying the work of both Cicely Saunders and Elisabeth Kübler-Ross, Florence Schorske Wald established the Connecticut Hospice in 1974. This entity provided both home and inpatient care and served as a stimulus to the development of hospices across the United States. In an interview she said, “Hospice care for the terminally ill is the end piece of how to care for patients from birth on. It is a patient-family-based approach to health care that belongs in the community with natural childbirth, school-based health care, mental health care, and adult care... As more and more people—families of hospice patients and hospice volunteers—are exposed to this new model of how to approach end-of-life care, we are taking what was essentially a hidden scene, death, an unknown, and making it a reality. We are showing people that there are meaningful ways to cope with this very difficult situation.”34

An international best-seller, Elisabeth Kübler-Ross’s On Death and Dying brought attention to the Western “death-denying” culture and her theory about the five stages of grief (denial, anger, bargaining, depression, and acceptance) that a dying person typically goes through.35 Articulating an early version of what today would be called “patient-centered care,” she said in a 1975 radio interview, “The question is really, ‘What does it mean to die with dignity?’ To die with dignity to me means to die within your character. That means there are people who have used denial all their life long; they will most likely die in a stage of denial. There are people who have been fighters and rebels all their life long, and, by golly, they want to die that way. And to those patients, we have to help them, to say it’s O.K.”36

Financing Hospice Care A Department of Health, Education, and Welfare (HEW) task force reported in 1978 that “the hospice movement as a concept for the care of the terminally ill and their families is a viable concept and one which holds out a means of providing more humane care for Americans dying of terminal illness while possibly reducing costs. As such, it is the proper subject of federal support.” This was followed by funding of a demonstration program in 1979, the creation of a Medicare hospice benefit in 1982, and the establishment of eligibility criteria in 1986 meant to control costs by trying to restrict access. Specifically, eligibility for federal reimbursement of hospice care requires that two physicians certify that the patient will die within six months “if the disease runs its normal course” and that the patient agrees to give up regular insurance coverage for life-prolonging treatments related to the terminal illness. In part as a consequence of these criteria, hospice became associated with “giving up” the fight for life in the minds of both the public and health professionals.

The Current Status of Hospice Care As the number and the needs of the chronically ill elderly have grown in the United States, the number of hospice providers grew by more than 30 percent between 1997 and 2007 (see Figure 6). In 2007, an estimated 1.4 million patients were cared for in a hospice, accounting for approximately 39 percent of all deaths in the United States, a number that has steadily increased in the last decade. Overall family satisfaction with hospice care is high, with 75 percent rating care received as excellent. Reasons for growth in hospice utilization are many and include a rise in hospice services in nursing homes, growth in the population living with advanced and end-stage chronic diseases, and greater recognition of and familiarity with the benefits of hospice care. Growth of this magnitude is accompanied by quality challenges. Much of the recent increase in hospice providers involved small for-profit hospice organizations. Delivering high-quality care to seriously ill patients with complex conditions requires some financial economies of scale that are impossible to achieve by small hospices serving few patients. Only 16.2 percent of American hospices serve more than a hundred patients per day. Despite regulatory concerns about the rise in the numbers of patients turning to hospice and the increasing length of stay for some hospice patients, recent data demonstrate substantial cost savings to Medicare (averaging $2,309 per patient) among hospice patients served for several months, depending upon the diagnosis.37

FIGURE 6.Hospice Patient Growth, 1982-2006.

Source: National Hospice and Palliative Care Organization; hospice data (2008). Reprinted with permission.