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Exploring documentation of end-of-life care of children with cancer

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De Graves, S. D.; Aranda, S.

This article presents the findings of a study that explored documentation surrounding the end-of-life care of children with cancer. An in-depth history audit of 18 children with cancer, who died from disease progression at a single tertiary paediatric centre during 1999, was performed to explore the extent and the ways in which the shift from cure to palliation was reflected in the child’s medical record. The study found that while physical aspects of care were documented there was little evidence of the human-to-human aspects of care or processes of decision-making when cure was no longer a possibility. Relapse and disease progression were identified as critical junctures for families and health professionals and an important area for future research. Further, the medical records documented ill-defined periods of palliation, with the child’s approaching death appearing as a gradual awareness rather than a distinct shift in goals of care from cure to palliation.

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