End of life care in children with cancer: a national survey from the Italian Association of Pediatric Hematology and Oncology (AIEOP)

Approximately, in Italy, 20% of children with cancer die of their disease. The aim of this study was to assess how children with cancer were cared for in Italy after their disease was declared incurable. A retrospective investigation was conducted through a questionnaire (see appendix at the end ot the article) sent to 54 AIEOP centers obtaining retrospective details on children (0-18 years old) dying from cancer in 2009, their history, their final management and their death. Data were collected for 202 patients (63% of children dying from cancer in Italy in 2009), who survived a mean of 107 days after they were declared incurable. Home care was recommended for 134 (66.3%) patients, but territorially integrated multidisciplinary palliative care teams were available for only 18 (14%) patients. 85 (42%) patients died at home, 117 (58%) in hospital, 17% of them in an intensive care unit. 70% of patients had continued to receive anti-cancer treatments and analgesics were administered in 83%. A case review was conducted with parents after their child's death in 49% of cases. Conclusions: the implementation of pediatric palliative care services according to the international guidelines still faces some barriers in Italy, above all a limited number of integrated palliative care teams and an inadequate feeling on how to manage terminal-stage care.