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A Dutch paediatric palliative care guideline: a systematic review and recommendations on advance care planning and
Kim C van Teunenbroek1, Renée L Mulder2, Dayna A M van Heel2
1Princess Máxima Centre for Paediatric Oncology, Utrecht, the Netherlands. k.c.vanteunenbroek@prinsesmaximacentrum.nl.
Insights
Advance care planning and shared decision-making improve paediatric palliative care quality. Recommendations guide involving children and families in care decisions, emphasizing education and resources for implementation.
Area of Science:
- Palliative Care
- Pediatric Oncology
- Bioethics
Background:
- Children with life-limiting conditions and their families face complex care decisions.
- Advance care planning (ACP) and shared decision-making (SDM) enhance care quality by aligning treatments with patient and family preferences.
- Optimizing ACP and SDM is crucial in pediatric palliative care.
Purpose of the Study:
- To develop evidence-based recommendations for optimizing advance care planning and shared decision-making in pediatric palliative care.
- To provide guidance for healthcare professionals in the Netherlands.
Main Methods:
- A multidisciplinary panel of 20 experts and 9 parents developed recommendations.
- Systematic literature searches identified quantitative and qualitative evidence.
- GRADE (CERQual) methodology was used for evidence appraisal, integrating evidence, expertise, and patient experiences.
Main Results:
- Four RCTs and 33 qualitative studies informed the recommendations.
- Twenty-eight strong recommendations were formulated.
- Guidance covers offering ACP/SDM, involving children and families, and communicating care information.
Conclusions:
- Evidence supports ACP and SDM in pediatric palliative care.
- Knowledge gaps exist, and implementation requires education, staffing, and funding.
- Recommendations can be adapted internationally, considering country-specific factors.
Background:
In paediatric palliative care, children with life-threatening and life-limiting conditions, their families, and their health care professionals often face difficult decisions about treatment, goals of care, and delivery of care. Advance care planning and shared decision-making are strategies that can improve quality of care by discussing goals and preferences on future care. In this paper, we provide recommendations that aim to optimise advance care planning and shared decision-making in paediatric palliative care in the Netherlands.
Methods:
A multidisciplinary guideline panel of 20 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on advance care planning and shared decision-making. We performed systematic literature searches to identify quantitative and qualitative evidence and used the GRADE (CERQual) methodology for appraisal of evidence. Recommendations were formulated based on quantitative and qualitative evidence, clinical expertise, and patient and family experiences.
Results:
We identified 4 RCTs that reported on the effect of advance care planning interventions in paediatric palliative care and 33 qualitative studies on barriers and facilitators to advance care planning and shared decision-making. We formulated 28 strong recommendations in close collaboration with a multidisciplinary guideline panel that provide guidance to offer advance care planning and shared decision-making, involve children and their family, and communicate information about care and treatment.
Conclusion:
The identified evidence and recommendations support the use of advance care planning and shared decision-making in paediatric palliative care. However, we found several knowledge gaps that should be addressed. As advance care planning and shared decision-making require specific skills and can be time-consuming, we emphasise the importance of education, adequate staffing and sufficient funding to improve integration in clinical practice. We do believe that our recommendations can be used as a starting point to develop recommendations in other countries. However, country-specific factors should be very carefully considered before applying any recommendations in other countries.
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