Medical education about end-of-life care in the pediatric setting: Principles, challenges, and opportunities

Objective. To identify the opportunities for and barriers to medical educat ion about end-of-life (EOL) care in the pediatric setting. Methods. A working group of pediatric specialists and ethicists was convene d at the National Consensus Conference on Medical Education for Care Near t he End-of-Life sponsored by the Open Society Institute's Project Death in A merica and the Robert Wood Johnson Foundation. The charge to the working gr oup was to consider the unique aspects of death in childhood, identify crit ical educational issues and effective instructional strategies, and recomme nd institutional changes needed to facilitate teaching about EOL care for c hildren. Conclusions. Although providing EOL care can be challenging, the cognitive and psychologic skills needed can be taught effectively through well-planne d and focused learning experiences. The ultimate goals of such instruction are to provide more humane care to very sick children, enhance bereavement outcomes for their survivors, and develop more confident clinicians. Six specific principles regarding EOL care in the pediatric setting emerged as essential curricular elements that should be taught to all medical care providers to ensure competent patient-centered care. 1) Cognitively and de velopmentally appropriate communication is most effective. 2) Sharing infor mation with patients helps avoid feelings of isolation and abandonment. 3) The needs of the patient are served when the ethical principles of self-det ermination and best interests are central to the decision-making process. 4 ) Minimization of physical and emotional pain and other symptoms requires p rompt recognition, careful assessment, and comprehensive treatment. 5) Deve loping partnerships with families supports them in their caregiving efforts . 6) The personal and professional challenges faced by providers of EOL car e deserve to be addressed. These principles actually transcend patient age and can be used to inform m edical education about the care of any terminally ill patient. Similarly, t hese principles of effective communication, ethical decision-making, and at tention to the quality of life of patients, families, and providers apply t o the care of all children regardless of diagnosis and prognosis. With this in mind, teaching about EOL care does not require a new and separate curri culum, but rather taking better advantage of the many teachable moments pro vided by caring for a dying patient.