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March 2003

Hello!   Welcome to the second ChIPPS Newsletter! We are very pleased to report that there are over 200 folks who have already expressed an interest in receiving the newsletter. As you can see, this is proving to be a useful vehicle for enhancing communication among those interested in pediatric palliative and hospice care. 

In this newsletter, we want to encourage you to attend the upcoming conference in Denver, Colorado, introduce you to some of the members of the ChiPPS Executive Committee, and tell you about ChIPPS%27 involvement with the National Alliance for Children with Life–Threatening Conditions.

1. The 4th Joint Clinical Conference of NHPCO: This conference will be held in Denver, Colorado, from April 12-14th, 2003.  A Pre-conference Institute on Wednesday, April 9th focuses on “Essentials of Pediatric Palliative Care.” This daylong session will provide an introduction to pediatric palliative care and offer an account of the basic philosophy of care and principles of pediatric palliative care. Case examples will be used in discussions about pain and symptom management, decision-making and unique aspects of bereavement in childhood. Psychosocial and spiritual aspects will also be highlighted.  Links will be noted between the content of this session and the new Education and Training Curriculum for Pediatric Palliative Care. This pre-conference event provides an excellent opportunity to meet many of the members of the Executive Committee and others involved in pediatric palliative care.

2. Introducing the Executive Committee: We would like to introduce you to half of the members of the ChIPPS Executive Committee in this newsletter…you will meet the others next month!

Stephen R. Connor Ph.D. is Vice President at the National Hospice and Palliative Care Organization in Alexandria Virginia. I have been the internal staff leader for efforts to advance pediatric palliative care at NHPCO since 1998. I am a licensed clinical psychologist, with over 25 years experience in the hospice movement throughout the US. As a former hospice director, I appreciate the critical need for compassionate care for dying children.

Charles A. Corr Ph.D. is Professor emeritus, Southern Illinois University Edwardsville. I am an educator with a professional background in philosophy. I believe I taught the first full-term, credit-bearing, college course in the United States on Children and Death in 1977. I joined the ChIPPS project when it was first established hoping to contribute to improved education about pediatric palliative care.

Betty Davies RN, Ph.D. is Professor and Chair, Department. of Family Health Care Nursing, University of California San Francisco. I served on the original Steering Committee for ChIPPS and now co-chair the Executive Committee with Dr. Stacy Orloff. My original goal in helping establish ChIPPS remains important to me today: to work across disciplines to conduct meaningful research, educate, and advocate for optimal hospice/palliative care for children and their families

Bruce Himelstein MD is Palliative Care Program Director at the Children%27s Hospital of Wisconsin and an Associate Professor in the Department of Pediatrics, Division of Hematology/Oncology, at the Medical College of Wisconsin. As a reformed oncologist, I devote 150 percent of my clinical, educational and research life to children living with life-threatening conditions. I joined ChIPPS to be able to commune with some of the most dedicated, innovative healthcare professionals. Through my efforts in multiple organizations, I would like to see all of the voices in the choir representing the interests of life-threatened children singing the same tune, to the same audience, at the same tempo.

Stacy Orloff Ed D., LCSW is Program Manager for the Child and Family Support Program at The Hospice of the Florida Suncoast. Established in 1983, our program is one of the first pediatric hospice programs in the country. I am a licensed clinical social worker trained as a family therapist. I also hold a doctorate in organizational leadership. I%27ve been active with ChIPPS since 1998 and am currently co-chair of the ChiPPS Executive Committee with Dr. Betty Davies. I am involved in ChIPPS for two predominant reasons to increase access of hospice and palliative care for children/families and educate hospice staff.

Suzanne Toce MD, a neonatologist, is Professor of Pediatrics at Saint Louis University School of Medicine and Medical Director of FOOTPRINTS, an advanced care planning/care coordination model of pediatric palliative care, funded by the Robert Wood Johnson Foundation. I joined ChIPPS in 1997 with a goal of working in a collaborative interdisciplinary atmosphere to instigate and implement improvement in the palliative care of children, particularly in the perinatal period.  

3. The Children%27s International Project on Palliative/Hospice Services (ChiPPS) is collaborating with the Life Institute to support the development of A National Alliance for Children with Life-Threatening Conditions.

The Life Institute is an educational organization espousing collaboration between the VA Healthcare Network of Upstate New Yorkand several other national organizations to develop and implement programs such as wellness in aging, advanced illness, and end of life care.

One of their current projects is the development of The National Alliance for Children with Life-Threatening Conditions (NACWLTC). Initial development funds for NACWLTC have been provided by The Project on Death in America of the Open Society Institute, The Charitable Leadership Foundation, The Robert Wood Johnson Foundation, Last Acts, Rallying Points, NHPCO, and The Kirk and Anne Douglas Foundation.

NACWLTC%27s overall aim is to create a national resource and support center to aid every community in America to access, develop, implement and measure comprehensive palliative, end-of-life and bereavement care services for children and their families.

Liz Sumner, RN, BSN, Director of the Children%27s Program at San Diego Hospice has been appointed Director of the NACWLTC. The following is a short interview with Liz and will give you some insight into what the Alliance hopes to accomplish and how you may assist in this effort.

Question: What was the impetus that lead to the development of the NACWLTC?

Ms. Sumner: A steering committee was formed to represent leaders in the field of Pediatric End-of-Life Care. The concept for an Alliance sprung as a response to the Institute of Medicine report released in July 2002, When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. This group was formed with the hopes of being a “catalyst for change.” The Alliance is meant to mobilize both individuals and organizations working toward improving palliative and end-of-life care for children; and to create a unified voice and a centralized place to access information in this field of healthcare.

Question: What is the first goal the Alliance hopes to accomplish?

Ms. Sumner: In the short term, one goal is to create an inventory of current resources and to provide a venue to disseminate these resources. An example is: educational curricula. It is important to gather educational materials and then offer this information for professionals and the public; to identify gaps in care, research and education and to create solutions. However, there is also a higher purpose to the formation of this Alliance; that is, to create a way in which every community across America has access to resources to assure good end-of-life care for children. My role is to lead this charge and help create a National Model for integrating Palliative and End-of-Life Care in those communities.

Question: How will you accomplish this goal?

Ms. Sumner: We have developed five workgroups set forth as recommendations from the IOM report.   The five content areas for the work groups include:  Policy/Advocacy, Education, Research, Clinical Models, and Community Support Services. Conference calls take place within each group about every 4-6 weeks. The workgroups represent all disciplines and people from communities, including healthcare professionals, organizations, school teachers, parents, foundations, and any individual having interest in palliative and end of life care for children. We are looking for individuals who want to work towards creating change. Each group has had one conference call thus far. The second set of conference calls will be in February and March. 

Question: How can we access information regarding participation in the work groups?

Ms. Sumner: Additional information on NACWLTC is available on the website at www.thelifeinstitute.org. Executive Director for NACWLTC is Dan Tobin, MD, of the Life Institute. For more information on NACWLTC you may contact The Life Institute at (202) 336-8397 or by email your interest at nacwltc@thelifeinstitute.org.

Watch for next month%27s newsletter where we will tell you about the results of the recent survey we conducted about pediatric palliative care! If you have information to share, questions, or any input…please let us know!