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How Do Children With Medical Complexity Die? A Scoping Review
Grace Mei Chan Ng1,2,3, Marie-Hélène Bourassa1,2, Hema Patel1,2
1Department of Pediatrics, McGill University Health Center, Montreal, Canada.
Journal of Palliative Medicine
|January 29, 2024
Summary
End-of-life care for children with medical complexity (CMC) is poorly understood. This review synthesizes literature, revealing high in-hospital death rates and intensive interventions, highlighting a need for compassionate care.
Area of Science:
- Pediatrics
- Palliative Care
- Medical Ethics
Background:
- Children with medical complexity (CMC) represent a growing population with increasing mortality.
- End-of-life experiences, trajectories, and decision-making for CMC are not well understood.
- Existing literature on pediatric end-of-life care often lacks focus on CMC.
Purpose of the Study:
- To synthesize existing literature on the end-of-life experience in children with medical complexity (CMC).
- To characterize illness trajectories, communication, and decision-making in CMC at the end of life.
- To identify knowledge gaps and inform future research and clinical practice.
Main Methods:
- A comprehensive literature search was conducted across multiple databases (MEDLINE, CINAHL, PsycINFO, Scopus, Embase, Google Scholar) up to August 26, 2021.
- Included studies reporting on CMC at end of life; extracted data were analyzed descriptively.
- Identified 23 relevant studies from 1535 publications, with most originating from North America and published after 2015.
Main Results:
- The majority of CMC deaths (80.6%) occurred in hospitals.
- CMC experienced increased healthcare utilization and more intensive interventions compared to non-CMC.
- Qualitative themes included prognostic uncertainty, differing quality-of-life perspectives, parental expertise, surprise at terminal events, multiple losses, and a need for compassionate care.
Conclusions:
- This scoping review highlights key characteristics of end-of-life care for CMC.
- Significant knowledge gaps exist regarding the end-of-life experience in this population.
- Improved understanding is crucial for informing clinical practice, service development, and future research in pediatric palliative care.
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