Bridging the gap between treatment and end of life for paediatric patients with cancer

Abstract

Background/Objectives: Nationwide Children’s Hospital is the largest children’s hospital in the United States. Our Psychosocial Oncology Team developed a model of care to significantly enhance care for dying children. The model embodies a collaborative approach with integration of medical, psychosocial, and palliative care services that allows for comprehensive, coordinated, and integrated programing. This model seeks to assess and treat emotional and symptom burden, facilitate communication, and provide anticipatory guidance and support to patients/families, while also facilitating staff communication and support. Design/Methods: Our program addresses specialized needs of dying children in a collaborative team approach. Patients are assessed and treated via a comprehensive psychosocial team of providers that include: psychologists, social workers, child life specialists, pastoral care, art, music, massage, and therapeutic recreation therapists. Anticipatory grief support is facilitated by ongoing relationships focused on continuity of care, medical decision-making, care conferences, and end-of-life conversations. We assist with patient/family communication with familycentered rounds, advanced care planning, and legacy building. Palliative/Oncology Rounds, team huddles, documentation, and death notification protocols were developed to improve staff communication. Additionally, we provide support for staff following patient deaths through debriefings/remembrances. Results: In large programs with multiple providers, it is often challenging to know who is providing specific services, while ensuring that families are receiving the care they need during a time of increased stress, sadness, and overwhelm. By increasing communication between and within teams, we are better able to: ensure support, enhance/streamline services, and delineate which staff are providing services. Conclusion: The Psychosocial Oncology Team at NCH has improved communication among medical, psychosocial, and palliative team members to enhance opportunities and provide support around a child’s death. In a field with a high level of burnout and stress, open communication and support among team members can serve to enhance the well-being and service provided to patients, and also reduce staff distress.