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End of life care sedation for children
Rut Kiman1, Alina Conti Wuiloud, Maria Laura Requena
1Pediatric Palliative Care Team, Hospital Nacional Professor Alejandro Posadas, Buenos Aires, Argentina. rkiman@gmail.com
Insights
End-of-life care sedation (EOLC-S) in children varies globally due to cultural factors. More research is needed on defining refractory symptoms and involving children in decision-making for better palliative care.
Area of Science:
- Pediatric Palliative Care
- Medical Ethics
- Symptom Management
Background:
- End-of-life care sedation (EOLC-S) for children is a complex issue influenced by cultural norms, legal frameworks, and differing perceptions.
- While home is preferred, most children die in hospitals or ICUs, highlighting a gap in aligning care settings with family wishes.
Purpose of the Study:
- To review current research on pediatric end-of-life care sedation (EOLC-S).
- To explore the multifaceted aspects surrounding EOLC-S in children, including prevalence, settings, and decision-making processes.
Main Methods:
- A comprehensive literature search was conducted on databases for articles published within the last year.
- Analysis focused on research concerning pediatric end-of-life care sedation, symptom management, and decision-making.
Main Results:
- Prevalence and practices of EOLC-S in children differ significantly across countries due to cultural, legal, and perceptual variations.
- There is a lack of established criteria for defining refractory symptoms and limited research on drug selection/dosing for non-cancer conditions.
- While families are involved in end-of-life decisions, children's participation is often minimal.
Conclusions:
- EOLC-S is infrequently described as a last resort, with unclear definitions of refractory symptoms and who defines them.
- Enhanced symptom management and advanced care planning by pediatric palliative care teams may reduce the need for EOLC-S.
- Further research is essential to standardize practices and improve the quality of end-of-life care for children.
Purpose Of Review:
This article is aimed to review updated research on end-of-life care sedation (EOLC-S) for children and aspects surrounding this issue.
Recent Findings:
Prevalence of EOLC-S for children may vary across countries on account of cultural differences, in terms of settings, legal issues and perceptions about EOLC-S, which lead to variation in patient selection and management. Although home is the preferred place of death for families, research shows hospital settings and ICUs to be the most frequent places where children die. Data on how to define refractory symptoms and update research on drug selection and dosing are lacking. Nature of symptoms at end of life (EOL) is described for cancer patients, but few articles focused on nononcological conditions. Decision making at EOL is commonly discussed with families but children are less frequently involved.
Summary:
A thorough search of databases was conducted for articles published in the last year. We found few articles describing EOLC-S as a last resort. But how, when and by whom a symptom is defined as refractory, is not well established. Aggressive symptom management at EOL along with advanced care planning conducted by pediatric palliative care teams could diminish EOLC-S. More research is needed.
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