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Lighting the way: improving the way children die in America
1San Diego Hospice, USA. LSumner@SDHospice.org
Insights
Pediatric end-of-life care requires specialized knowledge. A new coalition addresses the scarcity of pediatric palliative and hospice services, aiming to improve care for children and families.
Area of Science:
- Pediatrics
- Palliative Care
- Hospice Care
Background:
- Childhood death profoundly impacts families, necessitating specialized end-of-life care.
- Pediatric palliative and hospice care differ significantly from adult care, requiring unique expertise.
- A recent Institute of Medicine report highlights the scarcity of these services for children.
Purpose of the Study:
- To examine the formation and work of a new pediatric hospice and palliative care coalition.
- To underscore the unique aspects of pediatric end-of-life care.
- To identify opportunities for improving pediatric palliative and hospice services.
Main Methods:
- Review of the Institute of Medicine report on pediatric end-of-life care.
- Analysis of the formation and objectives of a new pediatric palliative care coalition.
- Discussion of the challenges and opportunities in pediatric end-of-life care.
Main Results:
- A coalition of pediatric hospice and palliative care leaders has formed.
- The coalition aims to be a unified voice for providers, parents, and children.
- There is a significant opportunity to improve pediatric end-of-life care following the IOM report.
Conclusions:
- Specialized pediatric end-of-life care is crucial for children and families.
- The new coalition provides a platform to address service scarcity.
- The IOM report offers a catalyst for advancing pediatric palliative and hospice care.
Abstract:
The death of an infant or child is a special sorrow, leaving a devastating and enduring impact that demands of us the very best we can offer to prevent and relieve suffering--for the child as well as the family. Pediatric end-of-life care is very different from adult palliative and hospice care and thus requires specialized knowledge and training to address the unique needs of these patients. In the wake of a recent Institute of Medicine (IOM) report on palliative and end-of-life care for children, there is a momentous opportunity to shed light on the scarcity of palliative and hospice care services for infants and children. A new coalition of pediatric hospice and palliative care leaders has been formed to serve as a unified voice for the leaders in the field, and the parents and children with which they work. This article examines the work of the coalition, the unique nature of pediatric end-of-life care, and the opportunities to effect change afforded by the release of the IOM report.