Advanced cancer in children: how parents decide on final place of care for their dying child.

Abstract

AIM: to explore retrospectively the decisions made by parents regarding their choice of place of care at time of death for their child with advanced cancer. DESIGN: cross-sectional descriptive study. ANALYSIS: interpretive phenomenological analysis. SAMPLE: parents of five children who had died of advanced cancer, whose care was overseen by the participating paediatric oncology centre in the southeast of England. Three children died at home and two in hospital. RESULTS: seven themes were identified, four of which will be discussed: valuing time left; needing to feel safe and secure; we didn't know what to expect; and the difference between specialist and non-specialist staff. Families' decisions were instinctive or intuitive rather than a calculated weighing up of options. Families identified aspects of care that were both valuable and could be improved. CONCLUSION: parents value the time that their children have to live when they know that their child's disease is incurable. Decisions around place of care are just that, decisions around place of care not place of death. Families valued the same types of support from staff regardless of the setting in which care was provided and found the same deficiencies difficult.