CHILDREN'S HOSPICE INTERNATIONAL PROGRAM FOR
ALL-INCLUSIVE CARE FOR CHILDREN® AND THEIR FAMILIES
The U.S. Government Accounting Office estimates that, of the approximately 72 million children in the United States, an estimated 10 million children currently live with a serious chronic condition. Current models of care for seriously ill children through end-of-life care, including hospice/palliative care programs, are neither sufficient, nor sufficiently available to adequately address the needs of children with life- threatening conditions and their families.
Children's Hospice International (CHI), with technical assistance from the Centers for Medicare & Medicaid Services (CMS), Congressional Members, and healthcare leaders, developed the Children's Hospice International Program for All-Inclusive Care for Children® and their Families (CHI PACC®) to overcome existing barriers to appropriate care for children with life-threatening conditions and their families.
CHI PACC is broader than traditional hospice/palliative care models, a CHI PACC® program provides a continuum of care for children and their families from time of diagnosis, with hope for a cure, and through bereavement if a cure is not attained. CHI PACC provides care in the most appropriate setting based on family choice, rather than the funding stream.
The CHI PACC® initiative was undertaken to provide access to care for ALL children and their families meeting the criteria of diagnosis with life-threatening conditions. This access includes children and families whose medical care is reimbursed by any payer source-private insurance, workplace coverage, managed care, or Medicaid.
Through Congressional appropriations, CHI -- with technical assistance from the federal CMS -- has established CHI PACC® prograns in Colorado, Florida, and is working with states and providers in California, Illinois, Kentucky, New Jersey, New York, New England, North Dakota, as well as the US Department of Defense. The experience of the initial programs has demonstrated the CHI PACC® model's flexibility through the diverse approaches to implementation. Additional states are pending.
- Hospice programs generally must limit their populations to individuals within six months of death who have elected to forego curative care. However, health care providers often cannot state with any level of certainty that a child is within six months of death.
- Families of children with life-threatening conditions must cease curative care in order receive end-of-life palliative care according to current hospice/palliative care models.
- Adult hospice programs are generally not equipped, and their staff is not trained to address the needs of the children and their families.
- The present system of pediatric care leads to high-cost, crisis-driven access to medical care and excessive reliance on institutional. Accompanied by a social cost in the form of disruption in family life, isolation, loss, or reduction of employment, and removal of the child from the community.
CHI PACC® Model
- CHI PACC® offers a comprehensive continuum of care for children with life-threatening conditions and their families from the time of diagnosis, with hope for cure, through bereavement follow-up if cure is not attained.
- Families of children with life-threatening conditions are not forced to choose between curative care and hospice/palliative care, but instead the CHI PACC® model allows palliative care to be offered along with disease treatment.
- The CHI PACC® model provides early and continual intervention and case management functions to prepare families and health care providers to provide support for the seriously ill child.
- With respite care, provided by the CHI PACC® model, parents are able to continue functioning in the community.