Neuropalliative Medicine in Pediatric Neurology

This article characterizes the unique aspects of neuropalliative care related to helping children with serious illness and their families live well in the face of health fragility and disability that may extend over years or even decades. Shared decision-making, medical management principles, and health care system-level factors are highlighted to provide concrete examples of how care may be affected.

Advances in diagnostic and therapeutic strategies have dramatically changed the field of child neurology, allowing for more precise diagnoses, more potential for intervention, and more home-based care for children with complex medical conditions. As a result, parents grapple with uncertain timelines, face countless decisions, and take on medical caregiving, often with inadequate support structures and considerable personal sacrifice. Because neurologic disease frequently creates additional barriers for communicating directly with patients themselves, it is especially important to maintain focus on the child's best interest and ways of understanding the child's experience over time. As disease-modifying treatments and medical technologies become more effective and available, our field must also evolve strategies to support the whole person and the context in which they live, not just interventions that maintain the physical body.

Child neurologists care daily for patients who can benefit from the communication strategies and management practices central to pediatric neuropalliative medicine, whether at the primary or subspecialty level. Although it is important to acknowledge life-threatening complications that may occur to develop congruent care plans, end-of-life management is only a fraction of the expertise of this evolving area of subspecialty practice.