Pediatric Neuropalliative Medicine

Talia Shear; Jori F. Bogetz; Lauren Treat

doi:10.1055/s-0044-1788774

Seminars in Neurology, Table of Contents

Semin Neurol 2024; 44(05): 514-522
DOI: 10.1055/s-0044-1788774

Review Article

Pediatric Neuropalliative Medicine

Talia Shear

¹Department of Pediatrics, Divisions of Child Neurology and Palliative Care, Ann and Robert H. Lurie Children's Hospital, Chicago, Illinois

²Northwestern University Feinberg School of Medicine, Chicago, Illinois

,

Jori F. Bogetz

³Department of Pediatrics, Division of Bioethics and Palliative Care, University of Washington School of Medicine, Seattle, Washington

⁴Treuman Katz Center for Pediatric Bioethics and Palliative Care, Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, Washington

,

Lauren Treat

⁵Department of Pediatrics, Divisions of Child Neurology and Palliative Medicine, University of Colorado School of Medicine, Aurora, Colorado

› Author Affiliations

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.

Keywords

pediatric - neuropalliative - severe neurological impairment

Full Text

References

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