Background: Children with severe neurodevelopmental disabilities and complex medical conditions are a growing and unique segment of the pediatric population. The increasing use of life sustaining technologies has provided the chance at an extended life and increasing inclusion within the broader community. Families work to overcome personal and professional biases, clinical uncertainties, and pragmatic obstacles to improve quality of life. Little attention, however, has been paid to the unique challenges of caring for a dying child affected with neurodevelopmental delay.
Discussion: In this paper we outline several specific barriers to the provision of excellent end-of-life care for these children and their families. We also outline our approach for overcoming these barriers.
Summary: The benefit of comprehensive palliative care in select pediatric populations has been demonstrated. Extending and tailoring those service to meet the unique needs of children with severe disabilities is the next logical step in that continuum. Ultimately, acknowledging that the lives of children with neurodevelopmental disabilities and their families have a unique quality will permit the human face of medical care to keep pace with technologic advances. Appreciation of the value of a perhaps incomparable quality of life will allow for a better quality of dying for children with severe neurodevelopmental disabilities.