instruction should cover all organ systems, and must include the important aspects of preventive, acute, chronic, continuing, rehabilitative, and end-of-life care” (Accreditation Standards, 2000).
Although several academic centers have begun fellowship training programs in palliative care, there are no programs for pediatric palliative care. Reflecting this deficiency, the content outline for the AAHPM certification examination in hospice and palliative medicine lists children only as a special population under the subject heading “Death and Dying.”
Hospice and home nurse agencies care almost exclusively for adults, but in the absence of special services for children, by default, dying children are cared for by them as well. These providers need education to prepare them for children’s care or, at a minimum, ready access to consultation with experts in pediatric palliation. However, there are only a few programs that educate hospice providers in the unique aspects of caring for dying children (Brenner, 1993).
Although the regulatory language for hospice practice (from the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) does not specifically exclude children from consideration, there is a dearth of detailed information for programs that serve dying children (Accreditation Standards, 2000). A tool to address this problem is the Compendium for Pediatric Palliative Care, developed by the Children’s International Project on Palliative Care/Hospice Services (ChIPPS) and currently under review (Marcia Levetown, M.D.; personal communication, 2000). Once complete, it will be published by the National Hospice and Palliative Care Organization. The stated goal of the compendium is to “provide information that would enable a hospice with no pediatric experience to care for a child.” The effectiveness of this tool must be studied once it is released.
The American Society of Clinical Oncology surveyed adult and pediatric oncologists in 1999 regarding palliative and end-of-life care issues. Only 10 percent of pediatric oncologists who responded reported that they had formal courses in pediatric terminal care in medical school, and only 2.2 percent reported a rotation in a palliative care or hospice service. The most common method of learning about these topics reported by pediatric oncologists was “trial and error,” and many reported anxiety about having to work with dying children. These practitioners not only are treating children, but are the role models for future generations of both generalists and specialists, who often look to oncologists for expertise in end-of-life care.
Pediatricians and pediatric issues are underrepresented in national organizations and committees dealing with medical care and reimbursement. For example, although organizations such as the National Hospice and Palliative Care Organization-National Council of Hospice Professionals have some pediatric representatives on subcommittees, no subcommittee