donor available: he had no siblings, and there were no unrelated donors who matched sufficiently well. Nonetheless, the patient and his family continued to choose treatment with curative intent hoping that his leukemia would stay in remission while the search for a marrow donor continued. At the time of his fourth relapse, he was still refusing hospice services—but he was not in denial of reality. He had decided he wanted all medical interventions necessary to keep him alive for as long as possible, but he refused artificial life support, mechanical ventilation, and cardiopulmonary resuscitation. He had signed an out-of-hospital do-not-resuscitate (DNR) form and discussed advance directives, choosing his mother as a surrogate decisionmaker if he was unable to make his own decisions. At one point in this process, he was placed in a difficult dilemma: choose treatment for your leukemia (oral palliative chemotherapy, transfusion of blood products) or hospice services at home. Hospice refused to admit him because of the high cost of care related to palliative interventions necessary to prolong his life, which he believed continued to be of good quality. This young man eventually died in the hospital from a serious infection. He deserved the benefit of palliative interventions but never received hospice care. This seems to be the case for the majority of pediatric oncology patients who die from progressive disease.
Another problem encountered in pediatrics is the choice parents sometimes have to make between hospice care and home nursing services for their ill child. Children who are eligible for services under state Medicaid waiver programs for medically fragile children (potentially any child with a life-limiting illness) are generally not eligible for hospice benefits under Medicaid or private insurers. This reality puts parents in a no-win situation, forcing them to choose between hands-on nursing support hours versus the holistic family-centered care provided by a supportive care or hospice and palliative care program. Most chronically or terminally ill children would benefit from some hours of home nursing support, as defined by the Medicaid criteria. However, most hospice and palliative care programs do not provide continuous nursing support in the home, unless they’re paired in a contractual arrangement with a home care company or unless they have chosen to bear the high cost of maintaining a home care license within a hospice.
“Bridge programs” have attempted to circumvent this issue by covering a severely ill child in a home care model until the child is strictly “hospice eligible.” Reimbursement for these comprehensive services is sparse at best, and usually means that hospice and palliative care programs are following families as “self- pay” until the very end of the child’s life or until the child is placed in a residential facility when home care needs are too great. Under these circumstances, the only part of the multidisciplinary care plan that is potentially reimbursable is physician billing, and the myriad other impor-