Abstract
Conditions impacting children with neurologic disease and their families range from congenital conditions diagnosed in the fetal period to acute brain injury in otherwise healthy teenagers. This chapter focuses on those conditions that may not have an adult correlate and provides an overview of how clinicians can provide a palliative approach towards their care of children with neurologic disease. Specific elements of palliative care are discussed, including estimating prognosis and communicating prognostic uncertainty, managing both pain and non-pain symptoms, providing targeted support for families and caregivers, and addressing the unique end of life care needs of pediatric neurology patients and their families. This chapter concludes by assessing current gaps in knowledge and training, and proposes an agenda for future researchConditions impacting children with neurologic disease and their families range from congenital conditions diagnosed in the fetal period to acute brain injury in otherwise healthy teenagers. This chapter focuses on those conditions that may not have an adult correlate and provides an overview of how clinicians can provide a palliative approach towards their care of children with neurologic disease. Specific elements of palliative care are discussed, including estimating prognosis and communicating prognostic uncertainty, managing both pain and non-pain symptoms, providing targeted support for families and caregivers, and addressing the unique end of life care needs of pediatric neurology patients and their families. This chapter concludes by assessing current gaps in knowledge and training, and proposes an agenda for future research.
Original language | English (US) |
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Title of host publication | Neuropalliative Care |
Subtitle of host publication | A Guide to Improving the Lives of Patients and Families Affected by Neurologic Disease |
Publisher | Springer International Publishing |
Pages | 135-147 |
Number of pages | 13 |
ISBN (Electronic) | 9783319932156 |
ISBN (Print) | 9783319932149 |
DOIs | |
State | Published - Oct 1 2018 |
Externally published | Yes |
Keywords
- Congenital
- Family
- Fetal
- Pediatric
- Prognostic uncertainty
- Shared decision making
ASJC Scopus subject areas
- General Medicine