The IPPC Team includes:

• a core group of senior investigators involved in establishing the overall conceptual direction of the project;
• staff at Education Development Center, Inc. responsible for developing the curriculum and providing technical assistance in behavior change and evaluation methods;
• collaborating organizations responsible for substantive review of the curriculum's content and assistance with national dissemination;
• a national advisory group to EDC, which developed a consensus document on domains, goals and quality indicators for pediatric palliative care.
• a national pediatric palliative care advisory group to the National Association of Children's Hospitals and Related Institutions (NACHRI)

Each of the individuals involved in IPPC in these various ways is named below. Biographical sketches of the core project investigators and staff are provided at the end of this section.

Director

David Browning, MSW, BCD
Senior Research Associate
Center for Applied Ethics
Education Development Center, Inc.
Newton, Massachusetts
Email: dbrowning@edc.org

Investigators

Principal Investigator

Co-Investigators

Deborah L. Dokken, MPA
Consultant/Parent Advocate
Chevy Chase, Maryland

Karen S. Heller, PhD
Senior Research Associate
Center for Applied Ethics
Education Development Center, Inc.
Newton, Massachusetts

Marcia Levetown, MD
President
Pain and Palliative Care Education Consultants
Houston, Texas

Deborah E. Sellers, PhD
Director of Research and Development
Center for Applied Ethics
Education Development Center, Inc.
Newton, Massachusetts

Collaborating Organizations

National Association of Children's Hospitals and Related Institutions (NACHRI)
(Liaisons: Susan Dull, RN, MSN, MBA, and Melinda Johnson, RN, BSN, CIC)

The New York Academy of Medicine
(Liaison: Alan R. Fleischman, MD)

Society of Pediatric Nurses
(Liaison: Vicky R. Bowden, DNSc, RN)

Association of Medical Schools Pediatric Department Chairs
(Liaison: Debra H. Fiser, MD)

Staff of The Center for Applied Ethics at Education Development Center, Inc., Newton, MA

David Browning, MSW, BCD
Senior Research Associate

Laura Riegelhaupt, EdM
Senior Research Associate

EDC National Advisory Group

Betsy Anderson
Director, Family Voices PIC
Boston, Massachusetts

Ann Armstrong-Dailey
Founding Director
Children's Hospice International
Alexandria, Virginia

Vicky R. Bowden, DNSc, RN
Immediate Past President
Society of Pediatric Nurses
Pensacola, Florida

Chris Brown, MS, CCLS
Director, Child Life & Education Department
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania

Susan Dull, RN, MSN, MBA
Director, Child Health and Financing/Children with Special Health Care Needs
National Association of Children's Hospitals and Related Institutions
Alexandria, Virginia

Bruce Jennings
Senior Research Scholar
The Hastings Center
Garrison, New York

Beverley H. Johnson
President
Institute for Family-Centered Care
Bethesda, Maryland

Robert W. Wharton, MD
Project Director, Study Group for Health Care Planning for Families
Spaulding Rehabilitation Institute
Boston, Massachusetts

Joanne Wolfe, MD
Medical Director, Pediatric Advanced Care Team (PACT)
Pediatric Oncology Department
Dana-Farber Cancer Institute
Boston, Massachusetts

NACHRI Palliative Care Advisory Group

Nancy Bowering
Clinical Manager
Hasbro Children’s Hospital
Providence, Rhode Island

Del Farris, MDiv
Director of Pastoral Care
Arkansas Children’s Hospital
Little Rock, Arkansas

Sarah Friebert, MD
Director, Regional Palliative Care Services
Division of Pediatric Hematology/Oncology
Children’s Hospital Medical Center of Akron
Akron, Ohio

Emmie Gardner, LCSW
Administrative Director, Hem/Onc/Transplant Service Line
Primary Children’s Medical Center
Salt Lake City, Utah

Javier R. Kane, MD
Asst. Professor of Pediatrics – University of Texas Health
Science Center at San Antonio
Director, Supportive and Palliative Care Program
CHRISTUS Santa Rosa Children’s Hospital
Medical Director, Pediatric Hospice Program
CHRISTUS Santa Rosa Hospice
San Antonio, Texas

Maria Martin, RN, BScN,
Acute Care Nurse Practitioner, Palliative Care
Hospital for Sick Children
Room 8231 Elm
Toronto, Ontario

Karen Painter, LMHC
Community PedsCare
Jacksonville, Florida

Kate Winkler, RN, MA, PNP
Coordinator, Community PedsCare
Jacksonville, Florida

Biographical Sketches

Vicky R. Bowden, DNSc, RN

Dr. Bowden is an Associate Professor of Nursing at Azusa Pacific University, in Azusa, California. She is co-author of the text Children and Their Families: The Continuum of Care, and has two other texts in progress. Dr. Bowden is the immediate past president of the Society of Pediatric Nurses (SPN). SPN has 1700 members representing nurses serving in a variety of roles and settings in pediatric health care. SPN is involved in the Nursing Leadership Academy on End of Life Care, and is collaborating with the National Association of Neonatal Nurses (NANN) and the Association of Pediatric Oncology Nurses (APON) to work on initiatives to promote end-of-life care education among their association members. Dr. Bowden and a colleague are writing an article for the Online Journal of Clinical Innovation that will summarize the evidence-based literature on pediatric end-of-life care issues that has been generated over the past ten years.

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David Browning, MSW, BCD

Mr. Browning is Director of the Initiative for Pediatric Palliative Care. He is an educator and consultant in bereavement and palliative care, and has designed and implemented curricula for health care professionals nationally. He serves as senior consultant to the Program to Enhance Relational and Communication Skills at Children's Hospital Boston, an innovative educational project that helps health care professionals to engage in difficult conversations with children and families at the end of life. Mr. Browning is a current recipient of the Social Work Leadership Development Award from the Project on Death in America.

Mr. Browning brings 25 years of clinical experience to his teaching and consulting activities. He has been director of the Safe Passage Bereavement Support Program and founding partner of The Sturbridge Group, a bereavement training and consultation organization. He serves on the Massport Critical Incident Stress Management Team, and is a core faculty member in the End-of-Life Care Certificate Program at Smith College School for Social Work. His research and publications have focused on ethnographic approaches to clinical practice, developing grounded theory in bereavement and end-of-life care, and enhancing reflective practice among professionals who work with death, dying, and grief.

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Deborah L. Dokken, MPA

Ms. Dokken has many years of management experience in strategic planning, marketing, staff and volunteer development, and cross-cultural training.

Since the losses of two infants and the premature birth of her son, Jeremy, she has been involved for several years in programs and projects to improve family support and family participation in health care. She was the co-founder of a nonprofit community-based organization, Partners in Intensive Care, and was a founding member of the Parent Partners Group in the neonatal intensive care unit at The George Washington University Hospital in Washington, D.C.

Ms. Dokken has been actively involved with several health care projects, including the CALM Fever Management program, the Initiative for Pediatric Palliative Care (IPPC), End-of-Life Care for Children and Their Families: Ethical Dimensions, and the Pediatric Pain Awareness Initiative. She is co-author of several articles, published in Pediatric Nursing and the Journal of Child and Family Nursing, on issues related to family-centered care and pediatric health. At the Children's National Medical Center in Washington, Ms. Dokken is a member of the Institutional Ethics Forum. She has also served on the Boards of the Association for the Care of Children's Health and Parent Care, Inc.

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Susan Dull, RN, MSN, MBA

Ms. Dull is Director, Child Health and Financing–Children with Special Health Care Needs at The National Association of Children's Hospitals and Related Institutions (NACHRI) in Alexandria, VA. She received her Master of Science degree in Parent-Child Nursing at the University of Colorado and her Master of Business Administration degree from Cleveland State University.

Prior to joining NACHRI, Ms. Dull worked in children's hospitals for almost 20 years in a variety of clinical, administrative, and educational roles. She was the first recipient of the John Heinz Senate Fellowship, serving as a health policy analyst with the Committee on Finance of the United States Senate.

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Alan R. Fleischman, MD

Dr. Fleischman is Senior Vice President of The New York Academy of Medicine and Professor of Pediatrics and Professor of Epidemiology and Social Medicine at the Albert Einstein College of Medicine. He has written, taught, and lectured extensively about many aspects of the developing field of bioethics, emphasizing the rights of individual patients and the responsibilities of health care providers. His work in the field of infant and fetal ethics has resulted in more than one hundred publications. Dr. Fleischman was a member of the American Academy of Pediatrics National Bioethics Committee and the National Committee on AIDS. He is a member of the New York State Governor's Task Force on Life and the Law, which has proposed multiple legislative initiatives in the field of public policy related to ethical problems in medicine. He is a consultant to the March of Dimes, where he co-chairs its National Bioethics Committee, and is a member of the National Communications Advisory Council. He also serves on the National Human Research Protections Advisory Board of the U.S. Department of Health and Human Services. At The New York Academy of Medicine, he is responsible for initiatives in urban health, education, public policy, ethics and public health.

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Karen S. Heller, PhD

Dr. Heller is a Senior Research Associate in the Center for Applied Ethics at Education Development Center (EDC), in Newton, Massachusetts, where she is Co-Investigator on the national Initiative for Pediatric Palliative Care (IPPC) program. During the first phase of this project, when she served as Project Director, Dr. Heller directed the qualitative research, in which parents of deceased children and clinicians from a range of disciplines who care for children with life-threatening conditions at three geographically dispersed U.S. hospitals were interviewed about their perceptions of the needs of gravely ill children and their families. At EDC, Dr. Heller also serves as Associate Editor of an international, peer-reviewed journal, Innovations in End-of-Life Care, which is issued bimonthly online, as well as in two print versions: the quarterly Journal of Palliative Medicine, and the annual print compendium, Innovations in End-of-Life Care: Practical Strategies and International Perspectives, published by Mary Ann Liebert, Inc., New York. At EDC, Dr. Heller also was Project Director of the national continuing medical education program, Decisions Near the End of Life.

Dr. Heller is a medical anthropologist with extensive research experience in urban community and clinical settings. Her prior research experience includes managing a study on end-of-life decision-making among cancer and AIDS patients from diverse ethnic and cultural backgrounds being treated at a large, urban public hospital, and serving as a researcher on studies concerning the management of chronic illness in frail, elderly people living in the community, the impact of disability on social interaction among residents and staff of a nursing home, and factors influencing whether or not HIV-infected people seek early treatment intervention. Dr. Heller received her PhD from the University of California at San Francisco and Berkeley, and was a Post-Doctoral Research Scholar at the Stanford University Center for Biomedical Ethics.

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Melinda Johnson, RN, BSN, CIC

Ms. Johnson is an Assistant Field Director for the FOCUS Group Initiatives at NACHRI. With her 23 years in nursing, she brings expertise in the clinical, administrative and consultation arenas of pediatrics. Clinically Ms. Johnson worked in pediatric medical-surgical, hematology, oncology, and bone marrow transplant units. She also served in management roles including manager, director, and administrative supervisor. Ms. Johnson brings 13 years of infection control and prevention experience, concentrating her efforts in the pediatric population.

Prior to joining NACHRI, Ms. Johnson provided leadership in several hospital programs in the southeast. She has developed numerous courses for hospitals, state departments and university institutions and has conducted education and training courses for health care professionals around the country.

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Marcia Levetown, MD

Dr. Levetown is the principal and founder of Pain and Palliative Care Education Consultants. She is board certified in Palliative Medicine and Pediatrics. She received her medical degree at the Medical College of Virginia, completed a pediatric residency at Baylor College of Medicine in Houston, and a fellowship in Pediatric Critical Care at Children's National Medical Center in Washington, D.C.

Dr. Levetown's experience in the PICU led her to establish the award-winning Butterfly Program, a program designed to meet the needs of children living with life-threatening conditions and their families. She is a Project on Death in America Faculty Scholar and Chair of the Children's International Project on Palliative and Hospice Services. She is the Principal Editor of the Compendium of Pediatric Palliative Care and author of numerous articles, chapters and curricula on pediatric palliative care issues.

Dr. Levetown was a member of the ethics committees of the American Academy of Pediatrics, the National Hospice and Palliative Care Organization, and the American Academy of Hospice and Palliative Medicine. She is also a member of the Institute of Medicine's Committee on the Care of Children Who Die and Their Families, as well as a founding board member of the Texas Partnership for End of Life Care.

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Laura Riegelhaupt, EdM

Ms. Riegelhaupt is a Senior Research Associate in the Center for Applied Ethics and Professional Practice at Education Development Center, Inc., where she is currently developing curriculum materials in pediatric palliative care for the national project, the Initiative for Pediatric Palliative Care (IPPC). Ms. Riegelhaupt is an expert in the development and evaluation of curricula for adult learners. She has recently worked with the Federal Emergency Management Agency (FEMA) on several curriculum development projects, including a training program for engineers and Federal, state, and local government officials on the benefit-cost analysis of natural hazard mitigation projects. Ms. Riegelhaupt has also designed and evaluated curricula for the Federal Aviation Administration's (FAA) Office of Civil Aviation Security, including training programs in crisis management and hazardous materials handling. Ms. Riegelhaupt has developed training curricula for corporations in the financial industry as well as educational software for children. She holds a Masters in Education degree from the Harvard Graduate School of Education, Harvard University.

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Cynda H. Rushton, DNSc, RN, FAAN

Dr. Rushton is Assistant Professor of Nursing at the Johns Hopkins School of Nursing and Clinical Nurse Specialist in Ethics at the Johns Hopkins University and Children's Center in Baltimore, Maryland, where she is Coordinator of the Harriet Lane Compassionate Care program. She also is Faculty of the Bioethics Institute at The Johns Hopkins University. She served as Nurse Ethicist at the Children's National Medical Center in Washington, D.C. until 1996.

Dr. Rushton has held a variety of clinical positions specializing in pediatrics and neonatal care, and she is involved in several professional organizations. She has served as President and past-President of the Association for the Care of Children's Health, was a member of the Ethics Integration Work Group for the American Association of Critical-Care Nurses, and sat on the board of directors of the American Society of Law, Medicine and Ethics. She worked on the development of standards for bioethics consultation as a member of the Bioethics Consultation Task Force of the Society for Health and Human Values/Society for Bioethics. She served on the ANA Task Force on the nurse's role in end-of-life decisions and on the Maryland Nurses Association Council on Ethics and Human Rights. From 1996-1999, Dr. Rushton was a member of The Robert Wood Johnson Foundation Last Acts Campaign Provider Education Task Force. She has published articles in numerous professional journals, been featured in several educational videos on end-of-life care issues, and from 1993-1996 was the editor of the "Dialogues in Ethics and Law" column for Pediatric Nursing.

Dr. Rushton earned her doctorate in nursing at the Catholic University of America with a concentration in bioethics, her Master's of Science in Nursing, with a specialization as a pediatric clinical nurse specialist, from the Medical University of South Carolina, and her undergraduate degree in nursing at the University of Kentucky. In 1990, Dr. Rushton was awarded the National Nurse of the Year by the ANA Council on Maternal Child Nursing and March of Dimes, and that same year was inducted as a Fellow into the American Academy of Nursing. In 1999, she was selected to be a Kornfeld Fellow in end-of-life ethics and palliative care, with a focus on pediatric palliative care.

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Deborah E. Sellers, PhD, MS

Dr. Sellers is the Director of Research and Development in the Center for Applied Ethics at EDC, Inc. She is a doctorally-trained sociologist with a specialization in research methods, which included master's level training in statistics. Dr. Sellers has extensive experience in research, evaluation, and survey design as well as data collection, processing, and analysis in substantive areas ranging from end-of-life care to organ donation to adult and adolescent health promotion. At the Center for Applied Ethics at EDC, Dr. Sellers manages the data processing and analysis components of three projects that included administration of needs assessment surveys to some 30,000 healthcare providers in over 90 hospitals and nursing homes across the country. Prior to her work at EDC, Dr. Sellers was the Project Director of REACT, a multi-center evaluation of a community education program to reduce pre-hospital delay among persons experiencing heart attack symptoms. This national project, funded by the National Heart, Lung, and Blood Institutes, included telephone surveys in 20 communities and abstraction of medical records in more than 40 hospitals across the country.

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Mildred Z. Solomon, EdD

Dr. Solomon is Associate Clinical Professor of Social Medicine and Anaesthesia at Harvard Medical School and Vice President of Education Development Center, Inc., a non-profit organization of more than 600 social scientists and educators engaged in 300 health and education projects throughout the United States and in 25 countries. At EDC, she directs the Center for Applied Ethics, an interdisciplinary research group focused on facilitating the wise and effective use of biomedical technologies. At Harvard, she directs the Harvard Medical School Fellowship in Medical Ethics. An expert in health communications and behavior change, Dr. Solomon has more than 25 years' experience designing and evaluating a wide variety of education and quality improvement programs for patients, health professionals, health care organizations, and the public. Dr. Solomon co-founded the nationally acclaimed Decisions Near the End of Life program. Currently being adapted for use in Germany and Switzerland, Decisions has helped more than 225 health care institutions in 37 states improve the ways in which they approach decisions about the use of life-sustaining treatments.

Dr. Solomon is Editor-in-Chief of the international, peer-reviewed journal, Innovations in End-of-Life Care, which has been recognized as one of the outstanding health-related websites (www.edc.org/lastacts/) in the United States. Honored by the Association of Academic Health Centers for "a distinguished career in medical education and public health," she is a frequent consultant to government agencies, including the Institute of Medicine, the Environmental Protection Agency, and the Centers for Disease Control and Prevention. Dr. Solomon received her doctoral degree from Harvard University, where she focused on educational research methods, adult learning, and professional education.

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Robert D. Truog, MD

Dr. Truog is Director of the Multidisciplinary Intensive Care Unit at Children's Hospital in Boston and Professor of Pediatrics and Professor of Anesthesia and Medical Ethics at Harvard Medical School, Harvard University.

Dr. Truog grew up in Southern California and received both his undergraduate and medical school training at the University of California, Los Angeles (UCLA). After completing a residency and chief residency in pediatrics at the University of Colorado in Denver, he returned to UCLA for a residency in anesthesiology. In 1986, he completed his fellowship training in pediatric anesthesia and critical care at Boston Children's Hospital, and he joined its faculty in 1987. After developing an interest in medical ethics, Dr. Truog undertook a two-year sabbatical to complete a Master's Degree in Philosophy from Brown University and the Program in Ethics and the Professions at Harvard University.

In addition to his clinical and administrative responsibilities, Dr. Truog co-chairs the Children's Hospital Ethics Advisory Committee and is the Associate Director of the Office of Ethics. At Harvard Medical School, he is the Director of Clinical Programs in the Division of Medical Ethics. His academic work has focused on the ethical issues that arise in anesthesia and critical care, and in 1993 he was awarded The Christer Grenvik Memorial Award from the Society of Critical Care Medicine for his contributions and leadership in the area of ethics.

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