National Academies Press: OpenBook
Suggested Citation:"Front Matter." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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DYING IN AMERICA

Improving Quality and

Honoring Individual Preferences

Near the End of Life

Committee on Approaching Death: Addressing Key End-of-Life Issues

INSTITUTE OF MEDICINE
        OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

www.nap.edu

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
×

THE NATIONAL ACADEMIES PRESS     500 Fifth Street, NW     Washington, DC 20001

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance.

Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the authors and do not necessarily reflect the views of the organizations or agencies that provided support for the project.

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Suggested citation: IOM (Institute of Medicine). 2015. Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press.

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
×

“Knowing is not enough; we must apply.
Willing is not enough; we must do.”    

                                                      —Goethe

htp

INSTITUTE OF MEDICINE
           OF THE NATIONAL ACADEMIES

Advising the Nation. Improving Health.

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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THE NATIONAL ACADEMIES

Advisers to the Nation on Science, Engineering, and Medicine

The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences.

The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. C. D. Mote, Jr., is president of the National Academy of Engineering.

The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Victor J. Dzau is president of the Institute of Medicine.

The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. C. D. Mote, Jr., are chair and vice chair, respectively, of the National Research Council.

www.national-academies.org

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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COMMITTEE ON APPROACHING DEATH:
ADDRESSING KEY END-OF-LIFE ISSUES

PHILIP A. PIZZO (Co-Chair), Former Dean and David and Susan Heckerman Professor of Pediatrics and of Microbiology and Immunology, Founding Director, Stanford Distinguished Careers Institute, Stanford University, Stanford, California

DAVID M. WALKER (Co-Chair), Former U.S. Comptroller General, Bridgeport, Connecticut

PATRICIA A. BOMBA, Vice President and Medical Director, Geriatrics, Excellus BlueCross BlueShield, Rochester, New York

EDUARDO BRUERA, Professor and Chair, Department of Palliative Care and Rehabilitation Medicine, The University of Texas MD Anderson Cancer Center, Houston, Texas

CHARLES J. FAHEY, Marie Ward Doty Professor of Aging Studies Emeritus, Fordham University; Program Officer, Milbank Memorial Fund, Syracuse, New York

PAMELA S. HINDS, Director, Department of Nursing Research and Quality Outcomes, Children’s National Health System; Professor of Pediatrics, The George Washington University, Washington, DC

KARLA F. C. HOLLOWAY, James B. Duke Professor of English and Professor of Law, Duke University, Durham, North Carolina

NAOMI KARP, Senior Policy Analyst, Office for Older Americans, Consumer Financial Protection Bureau, Washington, DC

JEAN S. KUTNER, Gordon Meiklejohn Endowed Professor of Medicine and Associate Dean for Clinical Affairs, University of Colorado School of Medicine; Chief Medical Officer, University of Colorado Hospital, Aurora, Colorado

BERNARD LO, President, Greenwall Foundation, New York, New York

SALIMAH H. MEGHANI, Associate Professor, Department of Biobehavioral Health Sciences, University of Pennsylvania School of Nursing, Philadelphia

DIANE E. MEIER, Director, Center to Advance Palliative Care, Catherine Gaisman Professor of Ethics, and Professor, Department of Geriatrics and Palliative Medicine, The Icahn School of Medicine at Mount Sinai, New York, New York

WILLIAM D. NOVELLI, Professor, McDonough School of Business, Georgetown University; Co-Chair, the Coalition to Transform Advanced Care, Washington, DC

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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STEPHEN G. PAUKER, Professor of Medicine and Psychiatry, Tufts University School of Medicine; Division of Clinical Decision Making, Informatics and Telemedicine, Tufts Medical Center, Boston, Massachusetts

JUDITH R. PERES, Clinical Social Worker and Policy Consultant, Chevy Chase, Maryland

LEONARD D. SCHAEFFER, Judge Robert Maclay Widney Chair and Professor, University of Southern California, Santa Monica

W. JUNE SIMMONS, President and CEO, Partners in Care Foundation, San Fernando, California

CHRISTIAN T. SINCLAIR, Assistant Professor, Division of Palliative Medicine, Department of Internal Medicine, University of Kansas Medical Center, Kansas City, Kansas

JOAN M. TENO, Professor of Health Services, Policy, and Practice, Brown University School of Public Health, Providence, Rhode Island

FERNANDO TORRES-GIL, Professor of Social Work, Professor of Public Policy, and Director of the Center for Policy Research on Aging, Luskin School of Public Affairs, University of California, Los Angeles

JAMES A. TULSKY, Professor of Medicine and Nursing and Chief, Duke Palliative Care, Duke University, Durham, North Carolina

Study Staff

ADRIENNE STITH BUTLER, Senior Program Officer

STEPHANIE H. PINCUS, Scholar-in-Residence

LAUREN SHERN, Associate Program Officer

BRADLEY ECKERT, Research Associate

JIM BANIHASHEMI, Financial Officer

THELMA COX, Administrative Assistant

Consultants

JUDITH A. SALERNO, President and CEO, Susan G. Komen Breast Cancer Foundation

NEIL WEISFELD, Writer

VICTORIA WEISFELD, Writer

RONA BRIERE, Editor

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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Reviewers

This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report:

Susan Block, Harvard Medical School

Christine K. Cassel, National Quality Forum

Myra J. Christopher, Center for Practical Bioethics

Don E. Detmer, University of Virginia School of Medicine

Kathleen A. Dracup, University of California, San Francisco, School of Nursing

Alexandra Drane, Eliza Corporation

Thomas Edes, U.S. Department of Veterans Affairs

Betty Ferrell, City of Hope Medical Center

Anita K. Jones, University of Virginia

Judith R. Lave, University of Pittsburgh

Joanne Lynn, Center on Elder Care and Advanced Illness, Altarum Institute

Willard G. Manning, The University of Chicago

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Charlie Sabatino, American Bar Association Commission on Law and Aging

Tracy Schroepfer, University of Wisconsin–Madison

Mark D. Smith, California HealthCare Foundation

VJ Periyakoil, Stanford University School of Medicine

James W. Vaupel, Max Planck Institute for Demographic Research

Joanne Wolfe, Children’s Hospital Boston

Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the report’s conclusions or recommendations, nor did they see the final draft of the report before its release. The review of this report was overseen by Bradford H. Gray, The Urban Institute, and Donald M. Steinwachs, Johns Hopkins University. Appointed by the National Research Council and the Institute of Medicine, they were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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Foreword

In spring 2009, bills for what eventually became the Patient Protection and Affordable Care Act were being drafted in the House and Senate. A bipartisan group of representatives sponsored a provision in the House version of the bill that would have authorized Medicare to pay doctors who counsel patients about living wills, advance directives, and options for end-of-life care. AARP endorsed the provision. However, pundits, bloggers, op-ed writers, talk show hosts, and other legislators claimed the provision would lead to government-sponsored euthanasia and heartless “death panels” that would adjudicate who shall live. The administration distanced itself from the proposal, which never found its way into the law.

Still, the specter of death panels had staying power. One 2011 poll of American adults found that 23 percent believed the Affordable Care Act gave government the power to make end-of-life decisions on behalf of seniors, and 36 percent were not sure. When Donald Berwick became commissioner of the Centers for Medicare & Medicaid Services, he attempted to authorize payment for counseling on advance care planning as part of annual wellness visits provided for under the Affordable Care Act. This provision was to go into effect on January 1, 2011. By January 4, the administration had withdrawn this provision. Doctors would still be free to talk with patients about living wills, hospice care, or other end-of-life concerns, but they could not bill Medicare for this service.

The controversy on this topic and the political desire to avoid it do not alter the fact that every person will face the end of life one day, and many have had hard experience with the final days of a parent, a spouse, a child, a sibling, another relative, or a dear friend. At a time when public

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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leaders hesitate to speak on a subject that is profoundly consequential for the health and well-being of all Americans, it is incumbent on others to examine the facts dispassionately, assess what can be done to make those final days better, and promote a reasoned and respectful public discourse on the subject.

With these goals in mind, the Institute of Medicine undertook the study documented in this report. A public-spirited donor, wishing to remain anonymous, came forward to support this study. We are grateful to this donor and to the outstanding and diverse committee, skillful co-chairs, and able staff who produced this comprehensive and compelling report. We hope it will stimulate the personal and public conversations and changes necessary to honor individual preferences and meet everyone’s needs at the end of life.

 
Harvey V. Fineberg, M.D., Ph.D. Victor J. Dzau, M.D.
Former President, Institute of Medicine President, Institute of Medicine
Suggested Citation:"Front Matter." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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Preface

Death is ultimately a deeply personal human experience that evokes different reactions, emotions, and perceptions from individuals, families, and communities throughout the life cycle. The perception of death is different for children, adults seen to be in the prime of life, and those in the later years of life, but it is also highly subjective and deeply personal irrespective of when it occurs along the life journey.

Perceptions and views about death are also influenced by a wide array of social, cultural, economic, geographic, spiritual, and religious beliefs and experiences. While most people have given thought to how they would like to die, many have found it difficult to communicate those views and choices to family and loved ones, and in many cases, family and loved ones have their own perceptions and views about death that can influence discussions about dying. Even when individuals and families are aligned, societal norms, expectations, and requirements are not always concordant with the patient’s wishes and choices. No one really knows whether, in the end, the death of a loved one occurred with the dignity that was hoped for, or to what degree the dying experience was marred by pain, fear, and discomfort, emotional or physical.

Unfortunately, the evidence demonstrates that even if one completes an advance directive or has a discussion on the subject with family and loved ones, it tends to be separated from the time of dying by months, years, or even decades. Most people envision their own death as a peaceful and an ideally rapid transition. But with the exception of accidents or trauma or of a few illnesses that almost invariably result in death weeks or months after diagnosis, death comes at the end of a chronic illness or the frailty

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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accompanying old age. Few people really have the opportunity to know when their death will occur.

Even though death is very much part of the cycle of life and the journey to physical dying begins with the inception of living, thinking and talking about one’s own death usually remains in the background, at least until its prospect become more probable or imminent. Of course, death can occur without warning, as it does with assaults and trauma, whether accidental or purposeful. Sudden death can also occur with certain illnesses, but death most often is more insidious and the result of a chronic illness or disease. And while it is true that the likelihood of death increases with age, it is also true that death occurs throughout the life cycle. As a discipline, moreover, medicine is filled with examples of faulty predictions offered prospectively, sometimes too tentatively and often too definitively. Humility about the inability to predict the actual time of death is an important attribute for the health care professional regardless of discipline or area of expertise.

As longevity becomes more common and disease leading to early and frequent death becomes less prevalent, it is easy to be lulled into the belief that death may be postponed or, as some prominent figures have forecast, even avoided. To be sure, advances in science and medicine and the burgeoning field of stem cell biology and regenerative medicine offer the prospect of delaying death to a much greater extent than previously thought possible. After all, in just one century, life expectancy in the United States rose from age 47 to 78, and individuals over 90 are now the most rapidly growing (albeit still a small) portion of the population. It appears probable that many children being born today will still be active at the turn of the next century. Still, death will inevitably occur.

While optimism about the prospect of continued life abounds, fears about death—or at least how it can happen or who governs it—can easily be stoked. Witness the impact of the unfortunate (although purposeful) choice of the words “death panels” during the heated debate surrounding the passage of the Patient Protection and Affordable Care Act in August 2009. Those two words conveyed that individual choice in how one faces dying and death could be supplanted by a distant and uncaring bureaucracy. While this fear was unfounded, its very presence and the ease with which it was evoked underscore the sensitivity of the topic of their personal mortality for many Americans, especially the elderly. That 20 percent of the U.S. population will be older than 65 by 2050 further demonstrates the importance of finding ways to improve the quality of the final days of life and honoring individual choices about end-of-life issues and concerns.

The Institute of Medicine (IOM) has played an important role in conversations and policies surrounding end-of-life care. In 1997, the IOM produced the report Approaching Death: Improving Care at the End of Life, and in 2003, it extended the conversation to pediatrics in its report When

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Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Each of these reports has had a major impact on end-of-life care, and a number of new programs, policies, providers, and systems of care have developed as a consequence. While many of the observations from these two major reports remain relevant, the United States has undergone many changes in its demography, in health care outcomes, and in the costs of health care delivery since these reports were published. Indeed, the past several years have witnessed a heightened focus on health care in this country, on what does and does not work, and on how systems of care vary across the population and differ from those of other developed countries. There is no question that while the cost of care in the United States is the highest in the world, the outcomes of care are not superior to those in other nations in any dimension or metric. And while cost should not by itself drive how high-quality, evidence-based care is delivered, it must be part of the dialogue. This applies to the care provided throughout the life course.

In 2012, the leadership of the IOM determined that another study on the end of life was needed given the intense ongoing dialogue surrounding health care reform in the United States. Dr. Harvey Fineberg, who was then president of the IOM, determined that this study should be conducted by a committee led by co-chairs whose collective expertise bridged the spectrum of the health care debate. One of us (Philip A. Pizzo) has spent decades caring for children and families with catastrophic disease facing the prospect of death. He has also been deeply steeped in biomedical research and the leadership of two major academic medical centers. The other (David M. Walker) has extensive experience in connection with fiscal responsibility and health care policy issues. His leadership experience spans all three major sectors of the U.S. economy. Of course each of us also brought personal history and experiences to the endeavor that resulted in areas of overlap, synergy, and sometimes difference in perspective. Our consensus committee included 19 other members, each with deep expertise related to various aspects of the medical, social, economic, ethical, and spiritual dimensions surrounding death.

Along with our highly competent study director, Dr. Adrienne Stith Butler, the committee held six meetings and hosted numerous discussions by phone, email, and other forms of communication. Those discussions generated both heat and light and gave witness to the strong and sometimes polarizing views that are engaged around the topic of the death and dying of vulnerable patients and families. Understandably, there were times when dialogues and debates seemed to reach an impasse, reflecting the larger public conversation (or the lack thereof) about various dimensions of the end of life. At the same time, those discussions helped sharpen our understanding of the issues involved and ultimately enabled us to reach consensus

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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on conclusions and recommendations that we hope will further shape the national conversation on dying in America.

As committee co-chairs, we owe a deep debt of gratitude to all the committee members for their time, energy, passion, commitment, and diligence. In the end, we share a common goal of improving the individual and highly personal experience of dying in America. We also want to thank the IOM members and staff who provided invaluable support for this study. Dr. Judith Salerno, who was Leonard D. Schaeffer executive officer of the IOM when our work commenced, left the IOM to become CEO of the Susan G. Komen Breast Cancer Foundation. Without missing a beat, she sustained her commitment and dedication to the committee’s work, as evidenced by her active and continued participation in committee meetings, discussions, and debates. We also want to thank Dr. Stephanie Pincus for her commitment and important insights, as well as Thelma Cox, Bradley Eckert, and Lauren Shern for their support. In addition, we were the beneficiaries of the writing and insights of Neil and Vicki Weisfeld, who enabled our discussion and debates to be framed in words with substance. Each of these many individuals exceeded expectations and enabled our progress to be sustained and successful. We also want to thank the numerous individuals who provided public testimony in person or in writing. The insights we received were invaluable and helped ground us in reality. It is our hope that this report will capture those insights and ultimately lead to improvements in end-of-life care and the experience of dying for all.

Philip A. Pizzo, Co-Chair
David M. Walker, Co-Chair
Committee on Approaching Death:
Addressing Key End-of-Life Issues

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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Acknowledgments

Several individuals and organizations made important contributions to the study committee’s process and to this report. The committee wishes to thank these individuals, but recognizes that attempts to identify all and acknowledge their contributions would require more space than is available in this brief section.

To begin, the committee would like to thank the sponsor of this study. Funds for the committee’s work were provided by a donor that wishes to remain anonymous. The committee gratefully acknowledges the contributions of the many individuals and organizations that assisted in the conduct of this study. Their perspectives were valuable in understanding critical topics with regard to end-of-life care. The committee thanks those individuals who provided important presentations and oral testimony at its open workshops. Appendix A lists each of these individuals and their affiliations. Written testimony received from hundreds of individuals and organizations also helped the committee understand the experiences of those who are likely approaching death and their family members and caregivers, as well as health care providers, and the perspectives of many stakeholder organizations. Appendix C provides a summary of this input. We would also like to thank the following Institute of Medicine (IOM) staff for their valuable contributions to this study: Jim Banihashemi, Daniel Bethea, Marton Cavani, Laura Harbold DeStefano, Chelsea Frakes, Greta Gorman, Jim Jensen, Nicole Joy, Abbey Meltzer, and Jennifer Walsh. The committee is grateful for the time, effort, and valuable information provided by all of these dedicated individuals and organizations.

The committee would like to thank the authors whose commissioned

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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papers added to the evidence base for this study: Haiden A. Huskamp, Harvard Medical School, and David G. Stevenson, Vanderbilt University School of Medicine; Melissa D. Aldridge and Amy S. Kelley, Icahn School of Medicine at Mount Sinai; and Chris Feudtner, Wenjun Zhong, Jen Faerber, and Dingwei Dai, Children’s Hospital of Philadelphia, and James Feinstein, Northwestern University. The committee is also grateful to Bryan Doerries, artistic director for Outside the Wire, and to T. Ryder Smith and Alex Morf, who performed at an event sponsored by the IOM and the committee at the Chautauqua Institution. Great thanks are owed as well to Sherra Babcock, who first extended the invitation for the IOM’s participation at the Chautauqua Institution, and George Murphy, who was instrumental in coordinating the logistics of the event. The committee is also grateful to Maureen Valenza from The University of Texas MD Anderson Cancer Center and Mira Engel from the Stanford University School of Medicine, who helped to coordinate the committee’s off-site meetings.

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Acronyms

AACN

American Association of Colleges of Nursing

AAHPM

American Academy of Hospice and Palliative Medicine

AAMC

Association of American Medical Colleges

ABIM

American Board of Internal Medicine

ABMS

American Board of Medical Specialties

ACA

Patient Protection and Affordable Care Act

ACC

associate certified chaplain

ACE

Aid to Capacity Evaluation

ACGME

Accreditation Council for Graduate Medical Education

ACL

Administration for Community Living

ACO

accountable care organization

ACOVE

Assessing Care of Vulnerable Elders initiative

ADL

activity of daily living

AGS

American Geriatrics Society

AHRQ

Agency for Healthcare Research and Quality

AoA

Administration on Aging

APACHE

Acute Physiology and Chronic Health Evaluation

APC

Association of Professional Chaplains

APHA

American Public Health Association

AP-NORC

Associated Press-National Opinion Research Center

AQC

Alternative Quality Contract

ARRA

American Recovery and Reinvestment Act of 2009

ASHP

American Society of Health-System Pharmacists

ASPE

Assistant Secretary for Planning and Evaluation

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BCC

board certified chaplain

BCCI

Board of Chaplaincy Certification Inc.

BCC-PCC

board certified chaplain-palliative care certified

BPCII

Medicare Bundled Payments for Care Improvement Initiative

BPS

Board of Pharmacy Specialties

CAPC

Center to Advance Palliative Care

CARE

Consumer Assessments and Reports of End of Life

CARING

Cancer, Admissions ≥2, Residence in a nursing home, Intensive care unit admit with multiorgan failure, ≥2 Noncancer hospice Guidelines

CBO

Congressional Budget Office

CCC

complex chronic condition

CCCC

Community Conversations on Compassionate Care

CCU

critical care unit

CDC

Centers for Disease Control and Prevention

CHCF

California HealthCare Foundation

CHF

congestive heart failure

CHIP

Children’s Health Insurance Program

ChiPACC

Children’s Program of All-Inclusive Coordinated Care for Children and Their Families

ChiPPS

Children’s International Project on Palliative/Hospice Services

CLASS

Community Living Assistance Services and Supports Act

CMS

Centers for Medicare & Medicaid Services

COPD

chronic obstructive pulmonary disease

CPR

cardiopulmonary resuscitation

C-TraC

Coordinated-Transitional Care

DNR

do not resuscitate

DO

doctor of osteopathy

DRG

diagnosis-related group

ED

emergency department

EHB

essential health benefit

ELNEC

End-of-Life Nursing Education Consortium

EMS

emergency medical services

EMT

emergency medical technician

ENABLE

Educate, Nurture, Advise Before Life Ends intervention

EPEC

Education in Palliative and End-of-life Care Program

EPSDT

Early Periodic Screening, Diagnosis, and Treatment

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Suggested Citation:"Front Matter." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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ER

emergency room

ESRD

end-stage renal disease

FDA

U.S. Food and Drug Administration

FFS

fee-for-service

GDP

gross domestic product

GRACE

Geriatric Resources for Assessment and Care of Elders

HCAT

Hopkins Competency Assessment Test

HCBS

home- and community-based services

HCUP

Healthcare Cost and Utilization Project

HEDIS

Healthcare Effectiveness Data and Information Set

HHS

U.S. Department of Health and Human Services

HIPAA

Health Insurance Portability and Accountability Act

HIS

Hospice Item Set

HITECH

Health Information Technology for Economic and Clinical Health Act

HMDCB

Hospice Medical Director Certification Board

HPM

hospice and palliative medicine

HPNA

Hospice and Palliative Nurses Association

HQRP

Hospice Quality Reporting Program

HRS

Health and Retirement Study

IADL

instrumental activity of daily living

ICD

implantable cardioverter defibrillator or International Classification of Diseases

ICU

intensive care unit

IHI

Institute for Healthcare Improvement

IPPC

Initiative for Pediatric Palliative Care

KFF

The Henry J. Kaiser Family Foundation

KID

Kids’ Inpatient Dataset

MA

Medicare Advantage

MEPS

Medical Expenditure Panel Survey

MMA

Medicare Prescription Drug Improvement and Modernization Act of 2003

MOLST

Medical Orders for Life-Sustaining Treatment

MSSP

Medicare Shared Savings Program

NASW

National Association of Social Workers

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NBCHPN®

National Board for Certification of Hospice and Palliative Nurses

NCCN

National Comprehensive Cancer Network

NCHS

National Center for Health Statistics

NCI

National Cancer Institute

NCOA

National Council on Aging

NCP

National Consensus Project for Quality Palliative Care

NCQA

National Committee for Quality Assurance

NDS

National Data Set

NEDS

Nationwide Emergency Department Sample

NHDD

National Healthcare Decisions Day

NHPCO

National Hospice and Palliative Care Organization

NIH

National Institutes of Health

NINR

National Institute of Nursing Research

NPCRC

National Palliative Care Research Center

NQF

National Quality Forum

OECD

Organisation for Economic Co-operation and Development

P4P

pay-for-performance

PACE

Program of All-inclusive Care for the Elderly

PACT

Patient Aligned Care Team

PaP

Palliative Prognostic score

PBRN

practice-based research network

PCLC

Palliative Care Leadership Center

PCORI

Patient-Centered Outcomes Research Institute

PCPI

American Medical Association-Physician Consortium for Performance Improvement

PCRC

Palliative Care Research Cooperative Group

PDIA

Project on Death in America

PDQ®

Physician Data Query

PEACE

Prepare, Embrace, Attend, Communicate, Empower Project

PEC

Pediatric Early Care program

PERCS

Program to Enhance Relational and Communication Skills

PHIS

Pediatric Health Information System

PIPS

Prognosis in Palliative Care Study

POLST

Physician Orders for Life-Sustaining Treatment

PPC

pediatric palliative care

PPCN

Pediatric Palliative Care Network

PPD

Premier Perspective Database

Suggested Citation:"Front Matter." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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QALY

quality-adjusted life-year

QIP

Quality Incentive Program

RWJF

Robert Wood Johnson Foundation

SGR

sustainable growth rate

SNAP

Supplemental Nutrition Assistance Program

SNF

skilled nursing facility

SUPPORT

Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments

UTD

Understanding Treatment Disclosure

VA

U.S. Department of Veterans Affairs

WHO

World Health Organization

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For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients, and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Dying in America is a study of the current state of health care for persons of all ages who are nearing the end of life.

Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes.

Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework, and makes recommendations to create a system that coordinates care and supports and respects the choices of patients and their families. The findings and recommendations of this report will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life.

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