Related Experiment Video
Updated: Jun 15, 2025
Author Spotlight: Advancing Pediatric Epilepsy Surgery in Children Through Novel Biomarkers and Enhanced Localization
Published on: September 20, 2024
Pediatric Neuropalliative Medicine
Talia Shear1,2, Jori F Bogetz3,4, Lauren Treat5
1Department of Pediatrics, Divisions of Child Neurology and Palliative Care, Ann and Robert H. Lurie Children's Hospital, Chicago, Illinois.
Insights
Pediatric neuropalliative medicine supports children with serious neurological diseases and their families. This vital specialty addresses complex needs, enhancing quality of life and human experience beyond physical treatment.
Area of Science:
- Pediatric Neuropalliative Medicine
- Child Neurology
- Serious Illness Care
Background:
- Childhood neurological diseases profoundly impact physical, social, emotional, and community well-being.
- Pediatric neuropalliative medicine addresses complex needs of children with serious neurological illnesses.
- Families face systemic biases and support gaps while navigating care.
Purpose of the Study:
- To summarize current knowledge in pediatric neuropalliative medicine.
- To highlight future research, education, and clinical innovations needed.
- To advocate for comprehensive systems supporting these children and families.
Main Methods:
- Literature review and synthesis of current knowledge.
- Identification of unmet needs in pediatric neuropalliative care.
- Analysis of the evolving landscape of child neurology practice.
Main Results:
- Pediatric neuropalliative medicine is crucial for managing uncertain trajectories and symptoms.
- Children with neurological diseases lead full lives, with families finding meaning in caregiving.
- Increasing availability of disease-modifying treatments necessitates integrated palliative care.
Conclusions:
- Pediatric neuropalliative medicine is essential for supporting personhood and quality of life.
- Care must encompass the human experience of serious illness, not just physical treatment.
- Further innovation is required to build robust systems for pediatric neuropalliative care.
Abstract:
Neurological disease in childhood has significant impacts on not only physical well-being, but also on the social, environmental, and emotional health of the child, their family, and the larger community. Pediatric neuropalliative medicine is a recently developed area of subspecialty practice that supports families affected by serious neurological illness in navigating uncertain illness trajectories, refractory symptoms, and the myriad medical decisions that arise over the life of the child. Despite their medical needs, children with neurological diseases live full, joyful, and connected lives with their families, many of whom also experience personal growth and find meaning in their caregiving. Patients and families under the care of neurologists also face many systemic and interpersonal biases, both within the health care system and in the community, and encounter frequent gaps in their home and community-based supports. This chapter summarizes what is known about pediatric neuropalliative medicine and highlights the future research, educational, and clinical innovations that are needed to build more comprehensive and well-prepared systems to address unmet needs. Particularly in the modern era of child neurology practice where disease-modifying treatments are becoming increasingly available, pediatric neuropalliative medicine is an essential area of subspecialty practice that helps to support the personhood and quality of life of the individuals affected by serious illness and their families. As medicine helps more and more children with neurological impairment survive, medical treatment must include not only treatment for the physical body, but also care and support for the complexity of human experience of living with serious illness.
