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Suggested Citation:"Appendix A: Data Sources and Methods." 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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Appendix A

Data Sources and Methods

The Committee on Approaching Death: Addressing Key End-of-Life Issues was asked to assess the current state of health care for persons of all ages with a serious illness or medical condition who are likely approaching death and who require coordinated care, appropriate personal communication, and individual and family support. The purpose of this study was to assess the delivery of health care, social, and other supports to both the person approaching death and the family; person-family-provider communication of values, preferences, and beliefs; advance care planning; health care costs, financing, and reimbursement related to end-of-life care; and salient education of health professionals, patients, families, employers, and the public at large. To respond comprehensively to its charge, the committee examined data from a variety of sources. These sources included a review of the literature since the release of the 1997 Institute of Medicine (IOM) report Approaching Death: Improving Care at the End of Life and the 2003 report When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families, public input obtained through a series of workshops and meetings, three commissioned papers, a public questionnaire soliciting experiences with end-of-life care, and written public comments on aspects of the study charge. The study was conducted over a 18-month period.

DESCRIPTION OF THE STUDY COMMITTEE

The study committee comprised 21 individuals with expertise in aging, palliative care, hospice, pediatrics, mental health, spirituality, caregiving,

Suggested Citation:"Appendix A: Data Sources and Methods." 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.
×

finance, health administration, public engagement, legal studies, health disparities, ethics, and health systems research. See Appendix G for biographical sketches of the committee members. The committee convened for six 2-day meetings in February 2013, May 2013, July 2013, September 2013, December 2013, and February 2014.

LITERATURE REVIEW

Several strategies were used to identify literature relevant to the committee’s charge. First, a search of bibliographic databases, including MEDLINE, EMBASE, and SCOPUS, was conducted to obtain articles from peer-reviewed journals. The keywords used in searches included advance directives, aging, bereavement, caregivers, chaplains, chronic disease, clinical and supportive care, communication, community engagement, continuing medical education, cultural barriers, death and dying, decision making, demographic shifts, disparities, epidemiology, ethics, ethnic groups, financing, fiscal realities, graduate medical education, health care delivery, health care quality, hospice, nursing, nursing home care, pain management, palliative care, patients, payment systems, pediatrics, pharmacy, professional education, professional standards, psychosocial care, public health, public-private partnerships, racial and ethnic differences, religion, social work, spirituality, team-based care, technology, vulnerable populations, and workforce development.

Staff sorted through approximately 4,500 articles to identify those that were relevant to the committee’s charge and created an EndNote database. In addition, committee members, meeting participants, and members of the public submitted articles and reports on these topics. The committee’s database included more than 1,500 relevant articles and reports.

PUBLIC MEETINGS

The committee hosted three public meetings to obtain additional information on specific aspects of the study charge. These meetings were held in conjunction with the committee’s February, May, and July 2013 meetings. Subject-matter experts were invited to the public meetings to present information and recommendations for the committee’s consideration. The committee also held open forums at each public meeting at which members of the public were encouraged to provide testimony on any topics related to the study charge.

The first public meeting was intended to focus on a discussion of the committee’s task, as well as provide a summary of the IOM’s two most recent studies in the topic area, which generated the two reports cited

Suggested Citation:"Appendix A: Data Sources and Methods." 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.
×

above—Approaching Death: Improving Care at the End of Life and When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. The second meeting focused on family caregiver experiences and needs, as well as national and state policies impacting caregivers. The meeting also featured representatives of community organizations focused on end-of-life care, as well as a detailed summary of state-specific programs and policies for individuals approaching death. The third meeting featured speakers who discussed clinical ethics, spiritual and religious needs of individuals near the end of life, and empirical and legal issues regarding advance directives.

At each public meeting, the committee heard testimony and comments from a broad range of stakeholders, including individuals living with chronic disease, family members of people approaching death, health care providers, and individuals representing national and regional advocacy groups. The committee found this input to be highly informative for its deliberations. Agendas for the three public meetings are presented in Boxes A-1 through A-3.

ADDITIONAL ACTIVITIES

After the committee’s third meeting in Houston, Texas, some members participated in mobile rounds. This activity was sponsored by the MD Anderson Cancer Center’s Texas Community Bus Rounds program. Committee members had the opportunity to visit patients enrolled in home hospice care and to observe the delivery of care provided by members of the palliative care team at the MD Anderson Cancer Center.

The committee also hosted a theatrical performance in August 2013 at the Chautauqua Institution in New York. The performance by Outside the Wire included a reading of the ancient Greek play Women of Trachis by Sophocles as a catalyst for a town hall discussion about death and end-of-life care as it touches patients, families, and health professionals. The event was facilitated by Bryan Doerries, artistic director for Outside the Wire, with performances by T. Ryder Smith (as Heracles), Alex Morf (as Hyllus), and Bryan Doerries (as the Chorus). The panel comprised Patricia Bomba, M.D., FACP, vice president and medical director of geriatrics at Excellus BlueCross BlueShield; Christine Cassel, M.D., president and CEO of the National Quality Forum; Harvey Fineberg, M.D., Ph.D., then-president of the IOM; and Philip Pizzo, M.D., professor and former dean at the Stanford University School of Medicine. The event included a discussion with the more than 500 attendees about their reactions to the reading and experiences and thoughts related to serious illness, aging, and end-of-life issues.

In addition to testimony at these meetings, the committee solicited public input on topics relevant to its charge through its website. More than

Suggested Citation:"Appendix A: Data Sources and Methods." 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.
×

500 individuals provided written testimony. A summary of these comments can be found in Appendix C.

COMMISSIONED PAPERS

The committee commissioned three papers from experts in subject-matter areas relevant to the study charge. These papers were intended to provide greater analysis and in-depth information on selected topics of interest to the committee:

  • A paper written by Haiden Huskamp of Harvard Medical School and David Stevenson of the Vanderbilt University School of Medicine provides a detailed analysis of financing and payment methods in end-of-life care, as well as possible reforms to federal eligibility and payment policies (see Appendix D).
  • A paper written by Melissa Aldridge and Amy Kelley of the Mount Sinai Icahn School of Medicine reviews the epidemiology of individuals approaching death, including demographics, clinical characteristics, and patterns of health care utilization. It also reviews current programs and models of care aimed at high-cost populations and suggests future research opportunities for evaluating this part of the population (see Appendix E).
  • A paper written by Chris Feudtner, Wenjun Zhong, Jen Faerber, and Dingwei Dai of The Children’s Hospital of Pennsylvania and James Feinstein of the Ann & Robert H. Lurie Children’s Hospital of Chicago reviews the challenges and opportunities of delivering pediatric end-of-life care and palliative care. The paper provides analysis on the epidemiology of children approaching death, in addition to potential implications for utilizing those data to make changes in pediatric end-of-life care (see Appendix F).
Suggested Citation:"Appendix A: Data Sources and Methods." 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.
×

BOX A-1
PUBLIC SESSION AGENDA

Wednesday, February 20, 2013

National Academy of Sciences
2101 Constitution Avenue NW, Lecture Room
Washington, DC 20418

1:00 p.m. WELCOME AND INTRODUCTIONS
Judith A. Salerno, M.D., M.S.
Leonard D. Schaeffer Executive Officer
Institute of Medicine
David M. Walker and Philip A. Pizzo, M.D.
Co-Chairs
Committee on Approaching Death: Addressing Key End-of-Life Issues
1:15 p.m. COMMITTEE PERSPECTIVES ON STUDY CHARGE
Committee members will discuss areas that should be considered during the course of the study.
2:15 p.m. STAKEHOLDER PERSPECTIVES ON STUDY CHARGE
Members of the public will have an opportunity to provide 3 minutes of comments/testimony in any area related to the study charge.
Susan Friedman
Deputy Director of Government Relations
American Osteopathic Association
Nneka Mokwunye, Ph.D.
Director
Center for Ethics, Washington Hospital Center
Evan DeRenzo, Ph.D.
Senior Clinical Ethicist
Center for Ethics, Washington Hospital Center
William Benson
Principal
Health Benefits ABCs and International Association for Indigenous Aging
Suggested Citation:"Appendix A: Data Sources and Methods." 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.
×
Mickey MacIntyre
Chief Program Officer
Compassion & Choices
Rosalind Kipping
President
Compassion & Choices National Capital Area Chapter
Lisa Culver, M.B.A.
Senior Specialist, Clinical Practice
American Physical Therapy Association
Barry Passett, M.D.
Physician
Joan Harrold, M.D.
Medical Director & Vice President of Medical Services
Hospice & Community Care
Kristen Santiago, M.S.
Manager, Strategic Initiatives
C-Change
David Longnecker, M.D.
Director
Association of American Medical Colleges
Sally Welsh, M.S.N., R.N.
CEO
Hospice and Palliative Nurses Association
Suggested Citation:"Appendix A: Data Sources and Methods." 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.
×
Marie Delvalle-Mahoney, M.D.
Physician
Canon Hospice and North Shore Hospitalists, LLC
Mollie Gurian, J.D., M.P.H.
Cameron Muir, M.D.
Executive Vice President, Quality & Access
Capital Caring/The Innovations Group
3:15 p.m. BREAK
3:25 p.m OVERVIEW OF 1997 IOM REPORT
APPROACHING DEATH: IMPROVING CARE AT THE END OF LIFE
Christine K. Cassel, M.D.
Former Chair of the Committee on Care at the End of Life
OVERVIEW OF 2003 IOM REPORT
WHEN CHILDREN DIE: IMPROVING PALLIATIVE AND END-OF-LIFE CARE FOR CHILDREN AND THEIR FAMILIES
Pamela S. Hinds, Ph.D., R.N., FAAN
Former Member of the Committee on Palliative and End-of-Life Care for Children and Their Families
DISCUSSION
5:00 p.m. ADJOURN and RECEPTION
Suggested Citation:"Appendix A: Data Sources and Methods." 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.
×

BOX A-2
PUBLIC SESSION AGENDA

Wednesday, May 29, 2013

Stanford University School of Medicine
300 Pasteur Drive, Always Building
Stanford, CA 94305

8:30 a.m. WELCOME AND INTRODUCTIONS
David M. Walker and Philip A. Pizzo, M.D.
Co-Chairs
Committee on Approaching Death: Addressing Key End-of-Life Issues
8:45 a.m. POLICIES AND CAREGIVING AT THE END OF LIFE
Lynn Friss Feinberg, M.S.W.
Senior Strategic Policy Advisor
Independent Living/Long-Term Care
AARP Public Policy Institute
Ms. Feinberg will provide an overview of policies that support family caregivers, including future policy needs at the end of life.
9:15 a.m. FAMILY CAREGIVER EXPERIENCES AND NEEDS
Barbara Sourkes, Ph.D.
Kriewall-Haehl Director, Palliative Care Program
Lucile Packard Children’s Hospital
Stanford University School of Medicine
Dr. Sourkes will provide an overview of critical issues that families face, both the universal themes that cross the life span and those that are specific to either adult or pediatric care at the end of life. She will moderate a panel of family caregivers who will provide their perspectives on challenges in communication, decision making, and obtaining optimal care for themselves as well as their loved ones.
Panelists:
Joanne Barr
Carla Reeves
Jim Santucci
Alyson Yisrael
Suggested Citation:"Appendix A: Data Sources and Methods." 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.
×
10:30 a.m. BREAK
10:45 a.m. COMMUNITY ORGANIZATIONS FOCUSED ON END-OF-LIFE CARE
VJ Periyakoil, M.D.
Director
Palliative Care Education and Training
Stanford University School of Medicine
Dr. Periyakoil will provide an overview of the opportunities and challenges related to providing culturally effective care for multicultural Americans. She will moderate a panel of representatives from community-based organizations effectively meeting the end-of-life needs of diverse populations. Panelists will describe the services they provide, the varied populations they serve, and lessons learned about effective strategies for facilitating access to quality end-of-life care.
Panelists:
Alex Briscoe
Director
Alameda County Health Care Services Agency
Marilyn Ababio
Hospice Systems Coordinator
Alameda County Health Services Agency
Sandy Chen Stokes, R.N., M.S.N.
Founder
Chinese American Coalition for Compassionate Care
Jean Yih
Board Chair
Chinese American Coalition for Compassionate Care
Barbara Beach, M.D.
Co-founder and Medical Director
George Mark Children’s House
12:00 p.m. LUNCH
Suggested Citation:"Appendix A: Data Sources and Methods." 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.
×
12:45 p.m. STATE-LEVEL PROGRAMS AND POLICIES
Panelists will provide an overview of programs, policies, and legislation pertaining to care at the end of life.
Susan Tolle, M.D.
Director
Center for Ethics in Health Care
Oregon Health and Science University
Myra Christopher
Kathleen M. Foley Chair for Pain and Palliative Care
Center for Practical Bioethics
Margaret Metzger, J.D.
Health Care Consultant
Wellesley, Massachusetts
2:00 p.m. PUBLIC COMMENT
Members of the public who register will have 3 minutes to comment on any topic related to the study charge.
Marilyn Golden
Senior Policy Analyst
Disability Rights Education & Defense Fund
Jeffrey Kaufhold, M.D.
Chair, Ethics Committee
Greater Dayton Area Hospital Association
Renée Berry
Chief Executive Officer
BeMoRe
Amy Vandenbroucke, J.D.
Executive Director
National POLST Paradigm Task Force
Suggested Citation:"Appendix A: Data Sources and Methods." 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.
×
Pat Dodson, M.A.
Advisory Board Member
Compassion & Choices
Paula Taubman
Northern California Executive Director
Compassion & Choices
Thomas White, Ph.D.
Member, Board of Directors
Compassion & Choices
Stephanie Harman, M.D.
Clinical Assistant Professor
Stanford School of Medicine
Devon Dabbs
Executive Director and Co-Founder
Children’s Hospice and Palliative Care Coalition
Heidi Engel, D.P.T.
Physical Therapist and Clinical Instructor
University of California, San Francisco Medical Center
L. Alberto Molina
Assistant Director of Interpreter Services
Stanford Hospital & Clinics
Angelica Villagran
VMI Coordinator
Stanford Hospital & Clinics
Johanna Parker
Lead Interpreter for Education and Training
Stanford Hospital & Clinics
3:00 p.m. ADJOURN
Suggested Citation:"Appendix A: Data Sources and Methods." 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.
×

BOX A-3
PUBLIC SESSION AGENDA

Monday, July 22, 2013

Baylor College of Medicine
One Baylor Plaza
Board Room, Room M-100
Houston, TX

1:00 p.m. WELCOME AND COMMITTEE INTRODUCTIONS
David M. Walker and Philip A. Pizzo, M.D.
Co-Chairs
Committee on Approaching Death: Addressing Key End-of-Life Issues
Paul Klotman, M.D.
President and CEO
Baylor College of Medicine
1:15 p.m. CLINICAL ETHICS
Jeremy Sugarman, M.D., M.P.H.
Harvey M. Meyerhoff Professor of Bioethics and Medicine
Johns Hopkins Berman Institute of Bioethics
Dr. Sugarman will present an overview of end-of-life decision-making principles, including respect for patients’ values, goals, choices, and dignity; advance care planning; surrogate decision making; the role of current best interests of the incompetent patient; conscientious objections by health care workers and institutions; justice; and allocation of limited resources.
Rebecca Dresser, J.D.
Daniel Noyes Kirby Professor of Law
Professor of Ethics in Medicine
Washington University in St. Louis
Former Member, President’s Council on Bioethics
Ms. Dresser will provide an overview of the President’s Council on Bioethics 2005 report Taking Care: Ethical Caregiving in Our Aging Society. She will focus on the importance of respect for human life and dignity and caring for persons who are disabled or enfeebled.
Suggested Citation:"Appendix A: Data Sources and Methods." 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.
×
2:00 p.m. DISCUSSION
2:30 p.m. BREAK
2:45 p.m. ADDRESSING SPIRITUAL AND RELIGIOUS NEEDS
Farr A. Curlin, M.D.
Associate Professor of Medicine
Co-Director, Program on Medicine and Religion
Faculty, MacLean Center for Clinical Medical Ethics
The University of Chicago
Dr. Curlin will examine the importance of spiritual needs and concerns for patients near the end of life and the value of religion as a source of support for many patients. He will consider the value of health care professionals inquiring about those needs and concerns; the benefits (in terms of patient outcomes) of addressing those needs as part of high-quality palliative care; the importance of the conscience and integrity of physicians and health care workers in end-of-life care; and ethical dilemmas that arise in a diverse, pluralistic society when the health care professional holds strong religious beliefs that differ sharply from the religious beliefs of the patient.
The Rev. Charles R. Millikan, D.Min.
Vice-President for Spiritual Care and Values Integration
The Methodist Hospital System
Houston, Texas
Rev. Millikan will discuss how in a multidisciplinary health care team in end-of-life care, the patient’s spiritual needs and concerns can be addressed in a respectful way. He will consider the role of hospital chaplains in helping patients address these issues in a nondenominational way, as well as the role of the patient’s own religious advisors.
3:25 p.m. DISCUSSION
4:00 p.m. ADJOURN DAY #1 PUBLIC SESSION
Suggested Citation:"Appendix A: Data Sources and Methods." 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.
×

Tuesday, July 23, 2013

Texas Children’s Cancer Center
6701 Fannin Street
Auditorium
Houston, TX

9:00 a.m. WELCOME AND COMMITTEE INTRODUCTIONS
David M. Walker and Philip A. Pizzo, M.D.
Co-Chairs
Committee on Approaching Death: Addressing Key End-of-Life Issues
9:15 a.m. EMPIRICAL AND LEGAL ISSUES REGARDING POLST
Susan E. Hickman, Ph.D.
Associate Professor, Indiana University School of Nursing
Co-Director, Research in Palliative and End-of-Life Communication and Training (RESPECT) Center, Indiana University-Purdue University Indianapolis (IUPUI)
Senior Affiliate, IU Health Fairbanks Center for Medical Ethics
Dr. Hickman will present a critical overview of empirical evidence regarding the impact of Physician Orders for Life-Sustaining Treatment (POLST) on clinical care and outcomes. Does POLST lead to fewer days in the intensive care unit in the last week of life, CPR before death, etc.? Do states that have robust POLST programs have different levels of specific medical interventions in end-of-life care? Does POLST reduce disputes regarding end-of-life decisions? Does POLST prevent complicated grieving by survivors or decision regret?
Rebecca Sudore, M.D.
Associate Professor of Medicine
University of California, San Francisco
Dr. Sudore will review challenges and limitations in advance care planning and POLST, with particular attention to vulnerable patients. She will consider the importance of conversations in advance care planning, as well as documentation of orders and the challenges entailed in improving these conversations.
Suggested Citation:"Appendix A: Data Sources and Methods." 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.
×
Alan Meisel, J.D.
Director, Center for Bioethics and Health Law
Dickie, McCamey and Chilcote Professor of Bioethics, and Professor of Law and Psychiatry
University of Pittsburgh
Mr. Meisel will discuss legal issues that might present challenges to a patient and family who wish to use the POLST form or other types of advance care planning. May a surrogate complete a POLST for a patient who has already lost decision-making capacity? Are there restrictions on using POLST to decline feeding tubes in patients with severe dementia or stroke? Are these limitations communicated effectively to patients and families using POLST? Have there been cases involving POLST in the courts? What other legal approaches to advance care planning have states implemented, such as default priority for surrogates and oral appointment of health care proxies, and how have they worked in practice?
10:00 a.m. DISCUSSION
10:45 a.m. BREAK
11:00 a.m. PUBLIC COMMENT
Members of the public who register will have 5 minutes to comment on any topic related to the study charge.
Diane Coleman
President and CEO
Not Dead Yet
Cynthia Taniguchi
Project Manager, Provider Implementation
McKesson Specialty Health
Donald Molony, M.D.
Professor of Medicine
University of Texas Houston Medical School
Robert J. Hesse, Ph.D.
Vice Chairman, Institute for Spirituality and Health
The Texas Medical Center
12:00 p.m. ADJOURN
Suggested Citation:"Appendix A: Data Sources and Methods." 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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Suggested Citation:"Appendix A: Data Sources and Methods." 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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Suggested Citation:"Appendix A: Data Sources and Methods." 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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Suggested Citation:"Appendix A: Data Sources and Methods." 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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Suggested Citation:"Appendix A: Data Sources and Methods." 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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Suggested Citation:"Appendix A: Data Sources and Methods." 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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Suggested Citation:"Appendix A: Data Sources and Methods." 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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Suggested Citation:"Appendix A: Data Sources and Methods." 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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Suggested Citation:"Appendix A: Data Sources and Methods." 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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Suggested Citation:"Appendix A: Data Sources and Methods." 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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Suggested Citation:"Appendix A: Data Sources and Methods." 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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Next: Appendix B: Recommendations of the Institute of Medicine's Reports *Approaching Death* (1997) and *When Children Die* (2003): Progress and Significant Remaining Gaps »
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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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