Continuity is usually valued, but other considerations must also be weighed, for example, a family’s desire to bring a child home rather than stay at a distant, specialized treatment center. Further, hospital or hospice rules, health plan requirements, licensure restrictions, and other policies can limit continuity, although creative and persistent families, social workers, physicians, and other team members may find ways around some restrictions in individual situations. Nonetheless, unless institutions establish systematic processes and protocols for handling special situations, arranging waivers to rules, and, more generally, making continuity planning a part of the care process, it will be difficult to sustain continuity of care and keep the focus on the child and family rather than on institutional requirements and conventions.
When primary responsibility for a child’s care shifts, those who have cared for a child may still seek ways to maintain some degree of continued communication and involvement with the child and family. If a child has been appropriately referred to hospice after the failure of chemotherapy and other cancer treatment, the hospice team and the oncology team can encourage continued relationships, for example, through regular phone calls. Similarly, a child’s primary care physician can call to keep in touch while a child is under a specialist’s care.
As described by advocates, the movement for family-centered care targets the subordination of the needs of the child and family to the needs of the health care system (see, e.g., Shelton et al., 1987; Johnson et al., 1992; Shelton and Stepanek, 1994; see also Harrison, 1993). Although the ideas championed by this movement have roots that extend back to the 1970s and before, they were given particular emphasis in the late 1980s by advocates for families whose children have special health care needs (as defined in Chapter 2).
The commonly cited elements of family-centered care for children with special health care needs do not explicitly include informing children, involving them in goal setting and care planning, and respecting their individual values and concerns. One reason may be the movement’s focus on children who have cognitive limitations or serious emotional disorders. Also, parents have legal authority to make decisions for their child and are usually the child’s primary caregivers.
Beyond the special needs community, proponents of patient-centered care have argued for understanding care “through the patient’s eyes” (Gerteis et al, 1993). A child-adapted version of that perspective would