Paucity of core palliative care elements available to children with cancer at end-of-life: Perspectives of bereaved parents and clinicians.

Abstract

9076 Background: Recognition of serious deficits in palliative care for children has prompted hospitals to develop specialized pediatric palliative care programs. However, only a minority of children who die from advanced cancer receive services from these dedicated programs. We aimed to determine which elements of palliative care are considered important according to bereaved parents and pediatric oncology clinicians and to determine availability of these elements. Methods: We administered questionnaires to 75 bereaved parents (response rate 53%) and 48 pediatric oncology clinicians (response rate 91%) at the Hospital for Sick Children in Toronto, Canada. The main outcome measures were importance ratings and availability of core elements of palliative care delivery based on the National Quality Forum clinical practice guidelines for quality palliative care. Results: Fifteen of the twenty-one core elements were highly valued by both parents and clinicians (defined as > 60% of parents and clinicians reporting the item as important). When compared to clinicians, parents gave higher importance ratings to receiving cancer-directed therapy during the last month of life (p = 0.007) and involvement of a religious or spiritual mentor (p = 0.03). Clinicians gave higher importance ratings to involvement of a social worker (p < 0.0001). Notably, of the valued elements, only three of them were available greater than 60% of the time according to clinicians and parents. Valued elements least likely to be available included a direct admission policy to hospital, involvement of a religious or spiritual mentor, sibling support and parent preparation for medical aspects surrounding death. Conclusions: Children with advanced cancer are not receiving key elements of palliative care despite both parents and clinicians recognizing them as important. Evaluation of barriers to provision of quality palliative care and strategies for overcoming them is critical.