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How do Children with Medical Complexity Die? A Scoping Review

Oral Presentation

October 14th 2022 at 2:30pm

Institution: McGill University - Montreal, Canada

Background: End of life (EOL) in children with medical complexity (CMC) is poorly understood and little is known about their illness trajectory, decision making and communication experiences.

Aims: This scoping review aimed to describe existing literature on the characteristics of EOL in CMC.

Methods: The study was conducted in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews. Electronic databases (MEDLINE, CINAHL, PsycINFO, Scopus, Embase) were searched up to June 2021. Studies reporting children at end of life and who fulfilled the definition of medical complexity by Cohen et al were included. Study characteristics and findings were extracted, followed by quantitative and qualitative analysis of the results.

Results: Of 1535 publications identified, 23 studies were included. 20 studies were quantitative, 16 studies extracted data from the USA and 18 reports were published from 2015 to 2021. Study outcomes were categorized into 5 main groups: (1) Place of death (2) Health care use (3) Interventions received or withdrawn (4) Communication and end of life experiences (5) Others. These outcomes were found to be associated with sociodemographic factors and CMC diagnostic categories. The weighted percentage of in-hospital CMC deaths was 81%. Studies reported that CMC had increased health care use and were subjected to more intensive interventions at EOL as compared to non-CMC. Themes highlighted from qualitative studies were that of prognostic uncertainty, chronic illness experience and recognizing parental expertise, with an overarching theme of compassion in the care of CMC at EOL.

Conclusion: This scoping review highlighted the unique characteristics of EOL in CMC and outlined the emerging body of literature on this topic. A better understanding of CMC would serve to inform clinical practice, service development and future research opportunities.