The psychological needs of haematology and oncology patients in a paediatric palliative care perspective: Clinical audit and service development in ireland

Abstract

Background/Objectives: Palliative care for children with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social and spiritual elements. The main focus is on enhancing quality of life for the child and supporting the family during the illness and after death. The new Psycho-Oncology Standard of Care (Kazak et al, 2015) indicates that each child diagnosed with a Life-Limiting Illness in Oncology and Haematology should be offered psychological support. This study aims to review the psychological care received by Oncology and Haematology children referred to the Specialist Paediatric Palliative Care Team (SPPCT) in 2014 and 2015. Design/Methods: Themedical notes of all children referred by the Haematology and Oncology services to the SPPCT in 2014 and 2015 were reviewed as part of a clinical audit. Results: Of the sixty-three patients referred to the SPPCT between 2014 and 2015, sixteen (25%) had met a clinical psychologist at least once during their cancer treatment and eleven (17%) received psychological interventions before they were referred to the SPPCT. Only three (1.9%) received psychological intervention after referral to the SPPCT. At the time of this review twenty-one children were still living with their terminal diagnosis. Of these, only one is currently receiving support from the psychology service. Of the forty-three children who have died the survival after referral to SPPCT ranged from 3 days to 14 months. Significant levels of psychological distress in many children were documented by the SPPCT. Conclusion: According to our audit, levels of psychological distress were significant. Despite clinical guidelines, not all children were referred to psychology at the same time as referral to the SPPCT due to a lack of resources. Psychological services need to be expanded to meet the current need of Haematology and Oncology children with terminal illness and the recommendations of the Psycho-Oncology Standard of Care.