The meaning of dying and death for children, their carers, and families: a scoping review

Abstract

Background The meaning of dying and death are underexplored concepts for Canadian children. Subsequently, it is unclear how children and stakeholders make meaning of children’s holistic health needs at the end of life. Methods A scoping review of the international scholarly literature was conducted. Thirteen data sources were searched to search the scholarly literature without date limits until January 2022. Studies were included on the basis of population: children (aged 0–19 years), families and caregivers; setting (in Canada and end-of-life or dying phases of living) and concepts of interest (dying and death). Results Of the 7377 studies identified, 12 were included for data extraction and content thematic analysis. The themes and subthemes include: 1) valuing the whole person; 2) living while dying; 3) authentic death talk; 4) a supportive approach (with lack and presence of support as subthemes); and, 5) a personalist approach. Conclusions There is a pressing need for research into the meaning of dying and death for children, their carers and families in Canada. Lack of holistic care, authentic death talk, specialized pediatric palliative care providers, a personalist approach and communities of support present major gaps in care for Canadian children. Research is urgently needed to address these knowledge gaps to generate policy and support practice for dying children in Canada.

Dying, dependency and death: Exploring palliative care access gaps for children

“…While many of these issues need to be parsed out further in relation to children’s unique dying and death experiences, the upshot is that the lack of attention being paid to the meaning of dying and death is a universal problem. Subsequently, research is needed to understand what dying and death mean to children 2 .…”

“…Existing research shows that the search for this meaning is an under-explored phenomenon 2 , 14 . Relevantly, and based on my initial research on the meaning of dying and death for Canadian children, I will focus on the experience of children in Canada.…”

“…While practical decisions about dying and death in the context of healthcare are important, more holistic approaches to care are also needed that appreciate what dying and death mean to the people experiencing them. Specifically, approaches that take into consideration the physical, psycho-social, and spiritual aspects of being human 2 . Moreover, the failure to attribute proper meaning to dying and death in healthcare is an ethical problem because death is a significant life event.…”

“…For instance, some children may receive PPC as Specialized Pediatric Palliative Care (SPPC). SPPC is care that involves interdisciplinary teams of healthcare professionals and social workers with the expertise to provide PPC in established settings and who specialize in the care of families with children who have complex care needs 2 , 6 .…”

“…Namely, children and all infants need adult decision makers involved in their care 11 . This relationality is especially true in Canada, where there is little understanding about the meaning that dying and death hold for children, their families, and caregivers in the context of Canadian healthcare 2 . Further, some children in Canada may soon be eligible for assisted death which has important, ethical implications for pediatric population health given the lack of access to SPPC in this country.…”