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Thanks for bringing some healing into the medical community.
The Congress helped me feel like I had an avenue to bring my personal experience and beliefs into mainstream medical
care. Wow, what powerful stuff. I now have some hope.
-MIKE MARCOTTE, MD, TOLEDO, OH
Frankie Back, Joyce Murtha, and Ann Armstrong-Dailey
(left to right) at the CHI Lifetime Achievement Awards Luncheon |
Over 150 health care providers, parents, and volunteers from around the world came to Johnstown, PA
in November to discuss care for children with life-threatening conditions and their families. This was
Children's Hospice International's 14th World Congress and was held in conjunction with Windber Hospice.
Ann Armstrong-Dailey, Founding Director and CEO of CHI said the choice of Windber Medical Center for the CHI
14th World Congress was clear because, "Windber Hospice has a children's hospice program that is still in
development but Windber has been accepting all children in need for many years. Windber personifies our
mission."
U.S. Congressman John P. Murtha (D-PA), and Mrs. Joyce Murtha, welcomed the World Congress participants
and guests at a reception in the Joyce Murtha Breast Care Center at Windber Medical Center on Sunday,
November 3rd and Congressman Murtha gave the opening address on Monday, November 4th at University of
Pittsburgh at Johnstown. Later that morning we heard about the child's perspective through a CHI video of
Mattie Stepanek; a mother's perspective from Beth Westbrook whose daughter died of cancer in 2001 and told
of the complicated journey she and her daughter went through; and the father's perspective from Maria
Gudmundsdottir, PhD in Living in the Shadow of Dragons: Father's Experiences in Pediatric Palliative Care,
research speaking about the difficulties fathers face during this experience.
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Ed Hutton, PhD, Terry Pratt, and Melissa Harris of the Centers for Medicare & Medicaid
Services spoke about the CHI PACC® Model of Care |
During the three-day World Congress, the healthcare experts focused on the challenges today's healthcare
systems face to meet the needs of children. The purpose of the conference was to provide these hospice and
pediatric palliative care experts an opportunity to present and discuss findings of programs of all-inclusive
care for children and share related experiences. The program included discussions about a groundbreaking
model in children's healthcare known as CHI Program for All-inclusive Care for Children and their families®,
from the Centers for Medicare & Medicaid, CHI, and the current demonstration projects. CHI PACC® provides
a continuum of interdisciplinary care for children from time of diagnosis of a life-threatening condition
with hope for a cure, through bereavement if a cure is not attained.
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The kids on the Block performed a puppet show about pediatric hospice care.
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During the first day of the conference, Mrs. John P. Murtha and Children's Hospice International's Founding
Director and CEO, Ann Armstrong-Dailey, presented the 2002 Lifetime Achievement Awards to four extraordinary
individuals, Lisbeth Quesada Tristán, MD, Becky Bedore, MSN, RN, Chriss Nelson, and Toni James-Manus, M.Ed., MPH
(click here for more details). Everyone was honored to meet these outstanding and dedicated people.
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The International Panel spoke of cultural issues in Pediatric Hospice & Palliative Care.
From left: Carla Lamadora of Zimbabwe, Jeannette Osbourne of Japan, Nicoleta Grecu of Romania,
Veronica Dussel of Argentina, Gail Hessell of Australia, and Stefan Friedrichsdorf of Germany
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Leaders in pediatric healthcare from as far away as Africa and Australia spoke on the importance of
increasing the development and expansion of children's hospice programs and how to best serve these children
and their families. Barbara Sourkes, PhD, talked about the psychological impact of being a child with a
life-threatening condition or having such a sibling in her keynote address, Armfuls of Time. Three parents
discussed their experiences throughout their child's life with a life-threatening illness and how they did
(or did not) receive the care they needed. This panel session prompted one nurse to write that,
".the parents had the most valuable information for each one of us."
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Joyce Murtha (far right) honorary Chairman of the 14th World Congress, and Ann Armstrong.
Dailey, Founding Director & CEO of CHI, pose with this year's CHI Lifetime Achievement Award
Winners. From left: Toni James-Manus of North Carolina, Becky Bedore of Minnesota, Lisbeth Quesada
Tristan of Costa Rica, and Chriss Nelson of Illinois
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Participants and speakers came from a range of disciplines, including nurses, doctors, social workers,
chaplains, and volunteers. A forum was created where people felt comfortable exchanging experiences and
ideas, which allowed one physician to note that they liked the "camaraderie among the participants." The
panel of international speakers was "fabulous" according to one social worker. They traveled from Australia,
Argentina, Germany, Japan, Romania, and Zimbabwe to share their knowledge of Cultural Issues Surrounding
Death, Dying and Bereavement and the Implications for Children's Hospice, Palliative, and End-of-Life Care.
Other presentations included discussion on developing a pediatric hospice, pain management, caring for
children with neurodegenerative disorders, international aspects of hospice and palliative care, spirituality,
staff support, neonatal care, standards and core competencies in pediatric care, and more. The diversity and breadth of
information brought to the conference was remarkable! As the conference came to an end on Wednesday, Dr. Lisbeth Quesada
gave the closing address on The Rights of a Child with a Terminal Illness, with one right being,
"I have the right to have
my needs taken care of in an integral way."
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We, at CHI, hope that everyone went back to their homes strengthened in their resolve to provide this
integral care for every child, from time of diagnosis, with hope for a cure, through bereavement follow-up
if cure is not attained.
Thanks to all who helped make this 14th World Congress a success, especially Frankie Bock and Roxann Berkey
at Windber Hospice, Nick Jacobs, President of Windber Medical Center, and the three Programming Co-Chairs,
Paul Brenner, M.Div., Betty Davies, RN, PhD, FAAN, and Ron Levin, MD, FAAP. We hope to see everyone at our
15th World Congress in September 2003!!
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U.S. Congressman John P. Murtha
(D-PA) opened the CHI 14th World Congress |
The Inclined to Sing Chorus of Johnstown, PA pay a musical tribute to Joyce Murtha at the CHI
Lifetime Achievement Awards luncheon |
If you would like to order audio tapes from CHI's 14th World Congress, please complete the
Audio Tape Order Form or contact CHI office at 800-2-4-CHILD or info@chionline.org
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