“How Can We Tell If They Are Suffering?” End of Life Care for Children with Neurologic Devastation; Medical and Ethical Considerations (TH116)

• Published in: Journal of pain and symptom management 2022-05, Vol.63 (5), p.785-785
• Main Authors: Goudie, Elizabeth, Taylor, Laura, Silbert, Sara
• Format: Article
• Language: English
• Subjects: Autonomy; Communication; End of life decisions; Ethical dilemmas; Ethics; Hematology; Hospice care; Intensive care; Medical treatment; Oncology; Palliative care; Pediatrics; Psychological distress; Suffering; Teams
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2022.02.207

Outcomes 1. Define neurologic devastation and evaluate its impact on symptom assessment and management at end of life (EOL) 2. Examine the intersection of nonbeneficial medical treatment and parental autonomy in the setting of lack of consensus regarding patient suffering at EOL in cases of neurologic devastation 3. Recognize communication tools and strategies to approach complex conversations with families and other care team members Children dying with neurologic devastation may undergo a prolonged end-of-life process as other organ systems often remain intact in the setting of conditions such as progressive CNS malignancies or severe intracranial trauma. In this concurrent session, multidisciplinary providers from pediatric palliative care and pediatric hematology/oncology will explore representative cases that highlight the end-of-life process in pediatric patients whose cases prompted symptom, communication, and ethical challenges as a result of their devastated neurologic status and questionable degree of suffering. The patients received prolonged EOL care in the pediatric ICU for more than 6 weeks, leading to substantial provider distress due to the patients receiving nonbeneficial medical treatment. Using these cases and a review of available published cases and ethics literature, presenters will explore the medical and ethical challenges that arise in managing end-of-life care for patients with neurologic devastation. To conclude the session, presenters will provide attendees with communication resources and a proposed approach to mitigating conflict between treatment teams and families in these uniquely complicated end-of-life cases.