For children in the final stage of life, palliative sedation can be a way to relieve unbearable suffering. But how exactly is this form of care used? And does this differ between countries? For the first time, these questions have been explored in an international study initiated by the EAPC Reference Group Children and Young People.
Why this study?
The topic is gaining attention. Paediatric palliative sedation raises important questions – both ethical and practical. Yet in many countries, very little research has been done. At the same time, there is a growing need for clarity, especially given the sensitivity of such care.
This study arose from the concerns and observations of professionals who work closely with children who are seriously ill. They noticed considerable differences in how sedation is understood/defined and applied at the end of life, and the absence of shared guidelines. The need for insight and structure was clear. From that shared motivation, the ‘Paediatric Palliative Sedation Study’ was born: a collaborative effort involving researchers and clinicians across Europe.
How was the study conducted?
A Belgian research team took the lead. They developed the survey, launched it nationally in both Dutch and French, and analysed the first set of results. Soon after, four other countries joined the initiative: the Netherlands, the Czech Republic, Portugal and Switzerland.
Altogether, five countries participated. It’s worth noting that participation was voluntary. This means the results mostly reflect countries that are already open to discussing or implementing paediatric palliative sedation.
What were the key questions?
The study aimed to answer several important questions raised by healthcare professionals:
- How is palliative sedation currently applied to children at the end of life?
- What are the intentions and considerations behind it?
- Are children and their families involved in decision-making?
- What medications are commonly used?
- And how do physicians view ethical issues, such as withdrawing artificial nutrition or hydration?
In addition to clinical practices, the study explored personal and professional views. Do opinions vary based on factors like age, religious background, or specific training in paediatric palliative care?
What does this mean for clinical practice?
Paediatric palliative sedation is rare. Many clinicians have little or no direct experience with it, which makes it all the more important to gather and share knowledge. The findings from this study may offer clinicians support in making careful, compassionate and consistent decisions.
Further, they may lead to developing shared international guidelines. Such guidelines could support clinicians further in this complex area of care.
What’s next?
The results are currently under review for publication in a peer-reviewed journal, so they cannot yet be shared publicly. Once the findings are published, a follow-up will provide more detailed insights.