CASE: Roy is a 13-year-old boy with autism spectrum disorder who has a recurrent glioblastoma. He initially underwent a surgical resection followed by 5 months of intensive systematic chemotherapy that required multiple hospitalizations. Although a clinical trial was considered, Roy was excluded from enrollment because of concerns around his ability to consent and adhere to a complex protocol. Imaging soon revealed significant disease progression and his care plan shifted toward palliative therapies.Roy was the only child of his aging parents. Roy's mother was navigating her own chronic medical condition, and his father worked a night shift at a manufacturing plant. Roy's parents described him as a "beam of light" that came into their life as a "healing miracle" after experiencing multiple miscarriages. Roy shined in his love for art and would often sketch portraits to connect with and interpret the world around him.Roy was typically accompanied by his parents during medical visits and hospitalizations. He was largely participatory with medical procedures and formed an especially warm bond with an infusion nurse during treatment. Roy soon developed persistent severe headaches, intermittent emesis, balance concerns, and a visual field cut interfering with his daily functioning. His frustration grew as these symptoms hindered his autonomy and ability to engage in meaningful activities, including drawing.Roy's worsened symptoms in the setting of his growing tumor resulted in multiple emergency room visits and poor pain control. While Roy benefited from the continuity of care provided during clinic visits, the emergency room was overstimulating, which contributed to the challenge of managing his care effectively. Roy was eventually admitted to the hospital for the management of an acute neurological decline. During prognostic dialogues with Roy's trusted primary oncology team, his parents remained focused on "finding a cure - a miracle" deferring hospice care and opting for life-prolonging treatments. As Roy continued to decline, he would repeatedly ask to go home. His parents remained guarded about engaging Roy in discussions about his prognosis and end-of-life decisions, hopes, fears, and wishes.Where do you go from here? What consultations might be helpful in this situation? What are relevant considerations for providing tailored end-of-life care for children and adolescents with developmental disabilities?
Hanania et al. (Mon,) studied this question.