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Hospice care for children differs from that for adults in a number of areas: patient characteristics, family concerns and decisionmaking, funding, and organizational resources. As discussed earlier, children’s needs are particularly variable, reflecting both developmental differences and differences in underlying medical problems and their course. In most situations, parents are legally responsible for decisions about their child’s care. Decisions to limit curative or life-prolonging efforts and focus exclusively on palliative care—as required for Medicaid and some private health coverage—are particularly difficult when the patient is a child.
Reflecting these differences, home hospice care for children builds on traditional hospice principles and practices but adapts them to accommodate the developmental characteristics and needs of children and the values and goals of their families (see, e.g., Goldman, 1996, 1999; ChIPPS, 2001; Armstrong-Daley and Zarbok, 2001; Sumner, 2001). Some hospices may develop special pediatric programs, but smaller hospices may make adjustments to incorporate children in programs that are adult-oriented or refer children to hospices with pediatric programs (Orloff, 2001). Hospice nurses and other personnel need special training to prepare them for the special requirements of working with young patients and supporting the families who are facing the exceptional stress of a child’s death. As noted earlier, even experienced pediatric and hospice nurses may have qualms about taking on this role. They may need moral support beyond that ordinarily recognized as necessary for the emotionally demanding work of hospice care.
Models and principles for pediatric hospice care are still being developed and tested. At a minimum, regardless of the patient population, turning palliative care principles into consistent, effective care at home involves certain core organizational capacities. These include
offering support for patients and families 24 hours a day, 7 days a week;
developing, evaluating, and improving organizational procedures and protocols for reliably and effectively meeting the physical, emotional, spiritual, and practical needs of terminally ill children and their families;
constructing interdisciplinary care teams that, taken together, have the necessary knowledge and skills needed to provide comprehensive and continuous care for a child at home under most circumstances;
providing reliable and immediate access to inpatient pediatric palliative care and other services for patients and families who require them;
training and assisting family caregivers; and
working, as appropriate, with the child’s specialist care team and general pediatrician.