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Pediatric palliative care in Sweden
Charlotte Castor1, Kerstin Ivéus2, Ulrika Kreicbergs3
1Lund University Sweden.
Insights
Pediatric palliative care (PPC) in Sweden varies regionally due to decentralized healthcare. Initiatives aim to standardize high-quality PPC for children with serious illnesses, improving care coordination and decision-making support.
Area of Science:
- Healthcare Management
- Pediatrics
- Palliative Care
Background:
- Healthcare governance in Sweden is decentralized, leading to regional variations in pediatric palliative care (PPC) organization, expertise, and resources.
- International standards define PPC as care for all children with life-threatening or life-limiting conditions from diagnosis.
Purpose of the Study:
- To present ongoing regional and national initiatives enhancing the quality of PPC in Sweden.
- To highlight diverse care services involved in providing PPC.
- To illustrate collaborative healthcare models supporting children's decision-making throughout their illness trajectory.
Main Methods:
- Review of regional and national initiatives for PPC quality improvement.
- Description of various care services offering PPC.
- Presentation of a case study demonstrating evolving care needs and collaborative decision-making.
Main Results:
- Ongoing efforts are underway to align Swedish PPC with international quality standards.
- A variety of specialized services contribute to PPC provision.
- Case examples demonstrate the importance of inter-organizational collaboration for patient-centered care.
Conclusions:
- Despite decentralized governance, Sweden is actively working to improve pediatric palliative care quality.
- Collaborative approaches across different healthcare facilities are crucial for supporting children and families facing life-limiting illnesses.
- Enhancing PPC quality requires coordinated efforts to meet evolving patient needs and facilitate shared decision-making.
Abstract:
In Sweden, the governance of healthcare is decentralized, so PC is provided with regional or local differences in organization, level of competence, and recourses. Ongoing regional and national initiative to increase quality of pediatric palliative care in Sweden aligns with the international standard of pediatric palliative care as a care directed towards all children with life-threatening or life-limiting illness or conditions from the time of diagnosis. Examples of such initiatives and of different care-services providing pediatric palliative care will be presented. Finally a case to highlighting how a child's care needs might change throughout the illness trajectory and how various healthcare facilities and organizations when collaborating can support the child's participation in decision making is presented.
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