Evaluate the effectiveness of educational materials and methods in pediatric palliative care. Curricula such as EPEC would be expected to be effective, but this cannot be assumed without appropriate evaluation. New outcome measures may be required to assess the skills of trainees and practitioners, incorporating assessments not only of knowledge about death and dying, but also of empathy, spiritual balance, educational capacity and effectiveness, or even business acumen.
Develop curricula that teach intact medical care teams the tenets of palliative care. Parents of seriously ill children have indicated that they strongly value the continuity of care achieved when the primary oncology team continues to care for their child through the time of death. While this delivers the desired continuity to parents, it has resulted in inadequate delivery of palliative care. Training of intact teams may improve the delivery of care as well as facilitate involvement of the necessary professionals.
Create and fund pediatric palliative care training and fellowship programs. Effective training in pediatric palliative care will depend upon many factors, including exposure to a wide array of clinical materials relevant to the field of study; good mentorship; well-defined evidence-based curricula; and the availability of a suitable academic environment to support the study of related fields such as bioethics, adult palliative care, epidemiology and biostatistics, or pharmacology. “Centers of Excellence” in pediatric palliative care should be created in which training and fellowship programs can offer education to adult hospice workers who care for the occasional dying child.
Add appropriate end-of-life content to general pediatric, pediatric subspecialty, and hospice and palliative medicine certifying examinations. Content on end-of-life care should be added not only to general pediatric board examinations, but also to subspecialty certifications such as intensive care, cardiology, neurology, and neonatology, which along with oncology have the most pediatric deaths. Hospice and palliative care practitioners must have a minimum fund of knowledge in order to provide comprehensive and compassionate care to dying children.
Add language to home health and hospice regulations specifically mandating competencies in pediatric end-of-life care. Providers should have a minimum fund of knowledge regarding medical, physiological, emotional, and developmental issues of the dying child. The pediatric UNIPAC curriculum (when available) could be made mandatory for providers who will care for children, and successful completion of the curriculum could be a criterion for individual and institutional licensure.
Develop national collaborative efforts to advocate for education in pediatric end-of-life care. To meet the educational needs of professionals caring for dying children, pediatric palliative care training sessions should