P0540 - Eternal Suffering: Addressing Parental Distress in Children with Advanced Illness

Background: In many pediatric cases, patient and parental distress are closely intertwined. To optimize care for children with advanced illness, palliative care providers must attend to both sources of distress.

Case Description:
MJ is a 4yo boy from Kuwait with multiply relapsed ALL diagnosed at 6 months of age. After MJ relapsed a third time, the decision was made to focus on his comfort, and our pediatric palliative care team (PPCT) was consulted to help address goals of care and symptom management.

His mother served as the primary reporter and was significantly concerned that her son was suffering. Although both the primary team and PPCT perceived MJ to be comfortable, his mother consistently perceived MJ to be in distress. She repeatedly expressed her desire for him to just “go to sleep”, and worried he would continue suffering after death.

Recognizing that maternal reports of MJ’s distress were likely in part a reflection of her own experience, the PPCT attempted to provide her additional support with several interventions including increased social work visits and spiritual support. To address her concerns surrounding MJ’s physical suffering, the PPCT participated in daily family-centered rounds with the primary team. This allowed for improved awareness of the mother’s perceptions and collaborative escalation of medical management to capture his symptoms based on both maternal and nursing reports. Ongoing longitudinal visits led to a noticeable improvement in our rapport with MJ’s mother and even occasional humor. She expressed relief that he was finally comfortable once palliative sedation was initiated two days prior to death due to severe refractory symptoms.

Conclusion: Though inevitably linked, the distress of children facing serious illness is distinct from that of their parents. This case highlights the importance of considering parental distress in the context of holistically treating pediatric patients. Discerning between sources of distress will help optimize care by targeting interventions appropriately.