Parental Perspectives on Location of Death for Children With Cancer - A Nationwide Cross-sectional Survey of Bereaved Parents.

BACKGROUND

Home death may not be equally accessible for all children with incurable cancer. Furthermore, inadequate symptom management in the home setting represents a major concern. The aims of this study were to examine: (i) the associations between parents' sociodemographic characteristics, prognostic understanding and care goals, and their child's place of death; and (ii) the associations between the child's place of death, and the parents' experiences of their child's symptom burden, end-of-life, and death.

METHODS

Nationwide retrospective cross-sectional survey among bereaved parents (n = 117) of children who died from cancer (n = 96) in Denmark at age younger than 18 years in the period 2006-2019. Data were analyzed using logistic regression analyses.

RESULTS

Parents who realized that their child had no realistic chance of cure ≥1 month before death had greater odds that their child died at home (odds ratio [OR] = 6.8; 95% confidence interval [CI]: 1.5-31.9; adjusted for child's cancer type, and parent's education, cohabitation status, and care goals). Parents whose child died at home were less likely to report a high symptom burden (OR = 0.4; CI: 0.2-0.9), and to prefer another place of death in hindsight (OR = 0.03; CI: 0.004-0.3), and more likely to feel prepared at the time of death (OR = 2.5; CI: 1.1-5.7), and to report that their child experienced a "good death" (OR = 3.4; CI: 1.2-9.6) (all ORs adjusted for child's cancer type).

CONCLUSIONS

When a child's death from cancer is foreseen and prepared for, the child's symptoms can be managed at home. Furthermore, parents whose child died at home had more positive experiences of their child's end-of-life and death.