The Unspeakable Nature of Death & Dying During Childhood: A Silenced Phenomenon in Pediatric Care

Author:

Campbell Sydney12ORCID,Moola Fiona J.3456,Gibson Jennifer L.127,Petch Jeremy18910,Denburg Avram11112

Affiliation:

1. Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada

2. Joint Centre for Bioethics, Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada

3. School of Early Childhood Studies, Ryerson University, Toronto, ON, Canada

4. Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada

5. Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada

6. Rehabilitation Sciences Institute, The University of Toronto, Toronto, ON, Canada

7. Division of Clinical Public Health, Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada

8. Centre for Data Science and Digital Health, Hamilton Health Science Centre, Hamilton, ON, Canada

9. Division of Cardiology, McMaster University, Hamilton, ON, Canada

10. Population Health Research Institute, Hamilton, ON, Canada

11. Division of Haematology and Oncology, The Hospital for Sick Children, Toronto, ON, Canada

12. Department of Pediatrics, Faculty of Medicine, University of Toronto, Toronto, ON, Canada

Abstract

In pediatric settings, the concept of hope is frequently positioned as a fundamental aspect of care and at odds with the possibility and proximity of death. This arguably fosters silence about death and dying in childhood despite evidence indicating the benefits of open communication at the end of life. In this paper, we describe the unspeakable nature of death and dying in childhood, including its conceptual and clinical causes and dimensions, its persistence, and the associated challenges for children and youth facing critical illnesses, their families, and society. We explore how the tension between hope and death can be reframed and apply our analysis to the context of medical assistance in dying for mature minors in Canada. Considering the lack of related literature, this paper offers initial reflections to form a framework for the unspeakable nature of death and dying in childhood and to advance the crucial need for research.

Funder

Social Sciences and Humanities Research Council of Canada

Publisher

SAGE Publications

Subject

Life-span and Life-course Studies,Critical Care and Intensive Care Medicine,Health (social science)

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