Children's Hospice International

CHI Hosts 15th World Congress in Alexandria, Virginia, USA

Over 150 pediatric palliative and hospice care providers from around the world came to Alexandria, Virginia, USA in September to share information and insight about caring for children with life-threatening conditions and their families. Children's Hospice International (CHI) hosted the four-day event, which kicked off on Sunday, September 14, 2003 with a reception celebrating CHI's 20 th Anniversary. During the reception, CHI presented U.S. Congressman James P. Moran (D-VA) with the "Ray of Hope" Award for his ongoing support of children with life-threatening conditions and their families.

Led by a bag piper-accompanied procession, the World Congress officially began on Monday, September 15 at the Radisson Hotel Old Town at which Congressman Moran welcomed everyone to Alexandria. The Congressman also announced CHI's selection of the New England region as the recipient of the seventh Children's Hospice International Program for All-Inclusive Care for Children and Their Families (CHI PACC ® ) grant. This grant, chosen through a competitive Request for Proposal (RFP) process, will allow for the planning and development of a model of coordinated, comprehensive and compassionate care for children with life-threatening conditions and their families in the New England area (read more about the latest CHI PACC Demonstration Program). Following this announcement, Dr. Howard Zucker, Deputy Assistant Secretary of Health and Human Services, gave the keynote address in which he shared his own experiences as a pediatric cardiologist and expressed his understanding of the difficulties faced by the healthcare providers in attendance.

Another highlight from the Opening of this year's World Congress was a personal appearance by thirteen-year-old New York Times best-selling author Mattie Stepanek, author of Heartsongs and other poetry collections, and his mother Jeni. Mattie and Jeni spoke about the challenges they face in living with life-threatening conditions and the progress being made in caring for children and their families. Mattie read several selections from his poetry collections. Ann Armstrong-Dailey, Founding Director, CEO of Children's Hospice International, presented the Stepaneks with a special tribute on behalf of all children and their families. The Opening concluded with a showing of the video presentation "I am Shades of Life," a moving musical rendition of Mattie's poem by Billy Gilman, courtesy of Billy Gilman and rpm management.

Monday's World Congress program continued with a poetry reading by Shelly Wagner, who shared her perspective as a parent through her verse. The morning sessions that followed explored international themes in children's hospice and palliative care, including an overview by Dr. Stefan Friedrichsdorf, a pediatrician and medical Fellow in Paediatric Palliative Care at the Children's Hospital at Westmead (Sydney, Australia), and an international panel with healthcare providers from Australia, Belarus, Costa Rica, Germany and the United States. After lunch, Dr. Burton Grebin, President and CEO of St. Mary's Healthcare System for Children in Bayside, New York, presented a session on the lessons learned during the evolution of the St. Mary's pediatric palliative care program and the future opportunities for exploration. The Congress delegates then broke into smaller sessions to participate in workshops covering topics such as pain and symptom management, art, music, and play therapy, pediatric perspectives in palliative care, and funding resources.

Tuesday's session opened with a thoughtful discussion of the ethical issues in pediatric hospice and palliative care by Sister Carol Taylor of the Georgetown University Center for Clinical Bioethics. A panel session moderated by Melissa Harris-on assignment to CHI from the Centers for Medicare and Medicaid Services (CMS)-focused on the challenges of providing comprehensive neonatal care. On this second day of the Congress, several presentations reviewed the development of the CHI PACC model as representatives from the existing CHI PACC states: Colorado, Florida, Kentucky, New York, Utah, and Virginia, shared their insight and experiences. CHI also hosted an Awards Luncheon to recognize the 2003 Achievement Awards recipients on Tuesday (read more about CHI's 2003 Achievement Awards recipients).

On the final day, despite threats of impending Hurricane Isabel, delegates stayed on to hear Dr. Javier Kane from the University of Texas Health Science Center in San Antonio, Texas give a remarkable presentation on Medical Decision-Making in the Care of Children with Incurable Illness . A panel featuring representatives from The Institute of Medicine; Center for Applied Ethics and Professional Practices, Initiative for Pediatric Palliative Care; National Hospice and Palliative Care Organization; American Association of Colleges of Nursing, End-of-Life Nursing Education Consortium; and Children's Hospice International, convened to examine the various curricula being developed and implemented for pediatric hospice and palliative care workers. After the final group of breakout sessions concluded, the group rejoined for a farewell lunch and closing ceremonies. Chris Brown, MS, CCLS of Children's Hospital of Philadelphia, gave a moving tribute, reading bits of prose and song written by and for the children and their families, which was musically accompanied by Paul Hill and Jim Newton of Celebration Shop, Inc. Ann Armstrong-Dailey bid farewell to the Congress participants and announced that next year's World Congress will be hosted in Edinburgh, Scotland (details about the 2004 Congress).

CHI would like to thank the World Congress co-chairmen: Charles A. Corr, PhD, Pamela Melbourne, RN, MN, Lisbeth Quesada Tristán, MD, the review committee, faculty, participants, CHI staff, coordinators Jennifer Fenley and Sloane York, and volunteers. The CHI World Congress is made possible largely due to the efforts of these individuals and their willingness to share their wealth of knowledge. We hope that all who attended the Congress will return to their work with a renewed sense of joy and dedication, striving for our ultimate goal-improving the quality of life for children with life-threatening conditions and the families who care for them!

If you missed the 15th World Congress, audio tapes of the sessions will be available for purchase soon. Check back later for order information..

We hope to see you next year in Scotland!