prepare a group of pediatric palliative care specialists to take lead responsibility for acting as clinical role models, educating other professionals, and conducting research that extends the knowledge base for palliative, end-of-life, and bereavement care.
Even for medical conditions that are invariably or often fatal, classroom lectures, clinical rotations, and medical textbooks focus almost exclusively on the pathophysiology of disease and the conventional or experimental interventions that might prolong life—often with little regard for the likelihood of success and with little attention to the burdens experienced by dying patients and their families. In one recent survey of pediatric oncologists, respondents reported that the most common way they learned about end-of-life care was “trial and error.” Experience in practice is an important and necessary teacher, but relying on such unstructured and unguided experience puts children and families at risk of much preventable suffering. Even in the crowded undergraduate medical curriculum, opportunities exist to use palliative care and end-of-life issues as powerful illustrations in didactic and clinical teaching.
Recommendation: To provide instruction and experiences appropriate for all health care professionals who care for children, experts in general and specialty fields of pediatric health care and education should collaborate with experts in adult and pediatric palliative care and education to develop and implement
model curricula that provide a basic foundation of knowledge about palliative, end-of-life, and bereavement care that is appropriate for undergraduate health professions education in areas including but not limited to medicine, nursing, social work, psychology, and pastoral care;
residency program requirements that provide more extensive preparation as appropriate for each category of pediatric specialists and subspecialists who care for children with life-threatening medical conditions;
pediatric palliative care fellowships and similar training opportunities;
introductory and advanced continuing education programs and requirements for both generalist and specialist pediatric professionals; and
practical, fundable strategies to evaluate selected techniques or tools for educating health professionals in palliative, end-of-life, and bereavement care.