Publication
Respecting Spirituality During Extubations: Holding Space for Miracles and Legacy with Reactive Comfort Plans
Morvant A, Mauser D, Moriarty J, Norvell M, Baker J, Ammon E · Journal of Pain and Symptom Management · 2024
Baby M experienced hypoxic ischemic encephalopathy with four subsequent unsuccessful extubations. He would not survive without potentially irreversible long-term ventilation. His parents lovingly decided against interventions that would not "fix" his underlying condition. They "prayed for the best and prepared for the rest." They were clearly redirecting his care plan to comfort. They demonstrated immense devotion to a belief in the Divine's power to facilitate a miracle. With an intact prognostic awareness and belief in a miracle, they wanted to ensure clinicians optimized Baby M for a successful extubation while simultaneously preparing to protect him from reintubation with an intensive comfort-focused care plan in place. A "Spiritually-Focused Extubation” is a novel term coined to pragmatically create a care plan that ensures the care teams are prepared to react quickly to physical suffering should the Divine's miracle not manifest. First, a DNR order is in place. Second, ensure the completion of spiritual rituals and legacy activities before the procedure begins. Rapid reactive comfort medications are preemptively prepared for quick intervention to mitigate potential physical suffering. Comfort then becomes an emergency in the moment that the family and team bear witness that the miracle is not manifesting. A “Spiritually-Focused Extubation" approach may cause clinician distress with the perception that authentic dialogue is not occurring or that a baby may physically suffer. However, this approach has been anecdotally successful with quality anticipatory guidance, informed consent, and a plan for quick mitigation of suffering. In the 20+ cases we observed, the family is seemingly at peace knowing they have done their due diligence as good parents, demonstrating authentic devotion to the will of the Divine (they reframe this experience as not "giving up," nor interfering or doubting the Divine's will) particular to the personal faith stance they may hold. Keywords Managing Suffering and Distress; Existential / Humanities / Spirituality / Religion
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.