January 12th, 2007 09:15 EST
Terminally ill children need support earlier than adults, group says
Washington – “We know from experience that although nothing will ever fill the void left by a child who has died,” says Children’s Hospice International founding director Ann Armstrong-Dailey, parents who use children’s hospice care can gain comfort from being involved in their child’s life to the very end and can learn valuable lessons for their own lives after their child’s death.
CHI is a U.S. nongovernmental organization that provides education, training and technical assistance to health care workers, people caring for children with life-threatening conditions and those children’s families. Founded in 1983, when only four of the 1,400 hospices in the United States were able to care for children, CHI collaborates with the U.S. Department of Health and Human Services and health care providers in the United States to find better ways to care for terminally ill pediatric patients.
Without the kind of help that hospice care can provide, parents often are not present emotionally for their children, a situation that can let children die feeling isolated and abandoned, Armstrong-Dailey told USINFO.
“Fathers feel they are being punished by God, mothers feel responsible for the glass of wine they might have had while pregnant, children blame themselves and even doctors sometimes feel a strong sense of failure when they are unable to cure a sick child,” she said.
Hospices are programs or facilities that provide palliative care and attend to the medical and psychological needs of the terminally ill and their families. They focus on easing symptoms and managing pain rather than curing the disease. Pediatric hospice care also addresses children’s questions about dying and what happens to them after they die.
“Families of terminally ill children need trained support from the beginning,” Armstrong-Dailey said, and children’s hospice care provides this support.
Hospice care designed for adults does not work well for children, according to Armstrong-Dailey, because the needs of children and the progression of their illnesses differ from those of adults. Hospices in the United States originally were designed for adult cancer patients who were able to track the progression of their disease and who knew when they were within the last six months of life.
By law, hospices can be used only by patients who have agreed to stop all curative treatment and who have fewer than six months to live. Both private insurance companies and federally funded health insurance plans, called Medicare and Medicaid, reimburse patients and their families for adult hospice-related expenses.
Terminally ill children, however, often go in and out of the apparently terminal phases of their diseases for many years, Armstrong-Dailey told USINFO. For this reason and because the hope of a medical cure persists, she added, parents usually are not willing to give up curative efforts for young children in order to take advantage of hospice care.
To overcome barriers to providing appropriate care to children with life-threatening conditions, CHI’s Program for All-inclusive Care for Children and Their Families (CHI PACC) was developed with government funding and technical assistance from the Centers for Medicare and Medicaid Services (CMS).
Using the CHI PACC model, state legislatures can obtain a waiver from CMS that permits hospice care to children from the time of diagnosis with hope for a cure through the bereavement period if a cure is not found. With CHI PACC, Medicare, Medicaid and a growing number of private insurers now reimburse families for comprehensive services throughout the health care system, whether care is provided to the child in the home, in the hospital or in a hospice or other appropriate facility.
Today, chiefly due to the efforts of Children’s Hospice International (CHI), most of the more than 3,000 hospices in the United States are able to accept children using the CHI PACC model. There are more than 450 programs with children-specific hospice, palliative- or home-care services.
Internationally, CHI has sent specialists to 42 countries to provide training. In summer 2006, CHI brought young cancer victims -- exposed to radiation after the 1986 Chernobyl nuclear accident -- and their health care providers from Minsk, Russia, to a hospice in Alexandria, Virginia. CHI also sent U.S. hospice workers to Minsk to train health care providers there.
The organization receives financial support from individuals and businesses, including initial funding by the Washington law firm Arnold and Porter and the accounting firm Price Waterhouse, and began receiving federal funding in 2000.
St. Christopher’s Hospice in London, founded in 1967, is considered the pioneer of the modern hospice movement, Armstrong-Dailey said. The first children’s hospice opened in 1982 at Helen House in Oxford, England, and in 1984, St. Mary's Hospital for Children in Queens, New York, developed the first children’s hospice program in the United States.
Additional information about Children’s Hospice International is available on the organization’s Web site.
See also “U.S. Nonprofit Group Is 'Nation’s Voice on Mental Illness’,” “America’s Second Harvest Feeds Millions of Hungry People,” “League of Women Voters Educates the American Electorate” and “Nonprofit Group Promotes Literacy by Book Distribution to Kids.”
(USINFO is produced by the Bureau of International Information Programs, U.S. Department of State. Web site: http://usinfo.state.gov)
This article is the fifth in a series on U.S. nongovernmental organizations.
By Carolee Walker
USINFO Staff Writer