Background: The quality and context of end-of-life care for children are not as well studied as they are for adults. The components of quality care are less clear, and differences between providers' perception of the quality of death are also not well understood. Objective: To compare nurse and physician perceptions of the quality of care and events of death of the same children. Design: Self-administered surveys following child deaths. Setting: Academic, tertiary care, faith-based children's hospital. Participants: Seventy-one matched sets of physicians and nurses who had cared for the same child at the time of death. Main Outcome Measures: Self-administered survey comprising closed-ended questions on the quality of care based on focus groups. Results: Physicians and nurses usually agreed on what had happened for events surrounding the child's care. In general, physicians tended to have more positive views of the death; however, positive reports of the quality of death of these patients were common for all providers. Agreement was high (>75%) for the matched sets with a few exceptions, including questions that asked for a provider's own behavior or expectation (eg, expecting further contact with a patient's family). However, chance-corrected agreement (measured as κ) was low. Conclusions: There was a good quality of care at the time of death for most patients, with minimal pain and suffering reported by providers. There were differences in perception explained by roles (physicians vs nurses). Future research should examine differences by provider experience and in other care settings.
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health