inadequate relief of pain and other physical symptoms,
research issues, and
reimbursement and regulatory issues.
Improving the quality of care and quality of life for dying children depends on improving the quality of education in pediatric palliative care. However, there are some basic impediments to teaching about death in childhood, including prognostic uncertainty, the move of pediatric residents to more outpatient experiences, and most importantly, the relative rarity of death in childhood (resulting in less provider experience and fewer opportunities for mentoring trainees). Some of these barriers, however, may represent educational opportunities (Sahler et al., 2000).
Training programs in the health professions have begun to pay increased attention to end-of-life issues, but the focus is on adults, with little content applicable to pediatrics. Examples include the American Medical Association’s Education for Physicians on End-of-Life Care (EPEC) curriculum (Emanuel et al., 1999) and the American Academy of Hospice and Palliative Care Medicine’s (AAHPM’s) “UNIPAC” self-study program for physicians who care for terminally ill patients and their families (AAHPM, 1998). Philosophically, adult and pediatric end-of-life care have much in common, but practical applications are clearly different for adults and children. There is currently no comprehensive end-of-life curriculum for pediatric palliative care, although a UNIPAC module for pediatrics is in preparation.
The lack of curriculum content specific to pediatric palliative care exists at all levels and across health care professions. No national standards for curriculum content in pediatric end-of-life care exist for schools of medicine, nursing, or social work, although more medical schools are including some aspects in pediatric clerkships. The Residency Review Committee “Program Requirements for Residency Education in Pediatrics” does not contain any specific language referring to palliative care or end-of-life care. The End-of-Life Nursing Education Consortium (ELNEC) Project from the American Association of Colleges of Nursing also lacks specific pediatric language, although nursing management courses including those specific to pediatric practice would fall within its curriculum guidelines (Ferrell et al., 2000). Recent revisions to accreditation standards from the Liaison Committee on Medical Education (LCME) include a standard on end-of-life care, but it is very broad in its scope, stating that “clinical