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.
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.
International Standard Book Number-13: 978-0-309-30310-1
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Library of Congress Control Number: 2014959553
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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.
“Knowing is not enough; we must apply.
Willing is not enough; we must do.”
—Goethe
INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES
Advising the Nation. Improving Health.
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.
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
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
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
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.
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
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 |
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
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
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
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
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
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.
3 CLINICIAN-PATIENT COMMUNICATION AND ADVANCE CARE PLANNING
The Current State of Advance Care Planning and What It Achieves
Advance Care Planning and Treatment Preferences Among Specific Population Groups
Elements of Good Communication in Advance Care Planning
Model Advance Care Planning Initiatives
A Proposed Life Cycle Model of Advance Care Planning
Findings, Conclusions, and Recommendation
Annex 3-1: Advance Care Planning in the Context of Common Serious Conditions
Annex 3-2: Oregon Physician Orders for Life-Sustaining Treatment (POLST) Form
4 PROFESSIONAL EDUCATION AND DEVELOPMENT
Impediments to Changing the Culture of Care Through Education
Roles and Preparation of Palliative Care Team Members
Findings, Conclusions, and Recommendation
5 POLICIES AND PAYMENT SYSTEMS TO SUPPORT HIGH-QUALITY END-OF-LIFE CARE
Financing and Organization of End-of-Life Care
Perverse Incentives and Program Misalignment
The Gap Between Services Paid for and What Patients and Families Want and Need
The Changing Health Care System: Financing and Organization
The Need for Greater Transparency and Accountability
6 PUBLIC EDUCATION AND ENGAGEMENT
The State of Public Knowledge About End-of-Life Care
The Changing Climate for Discussion of Death and Dying
Considerations for Public Education and Engagement Campaigns
Annex 6-1: Selected Public Engagement Campaigns on Health-Related Topics
C Summary of Written Public Testimony
D Financing Care at the End of Life and the Implications of Potential Reforms
E Epidemiology of Serious Illness and High Utilization of Health Care
F Pediatric End-of-Life and Palliative Care: Epidemiology and Health Service Use
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| 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 |
| 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 |
| 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 |
| 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 |
| 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 |
