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,
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
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
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).
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 |
|
| 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 |
|
| 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 |
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 |
|
| 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 |
| 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 |
|
| 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 |
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. |
| 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 |
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. |
| 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 |
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