Embers in Existence: Spiritual and Existential Distress in a Burn Injury Resulting from Spiritual Practice

• Published in: Journal of pain and symptom management Vol. 67; no. 5; pp. e658 - e659
• Main Authors: Salant, Jennifer A., Douglas, Stephen B., Slusarz, Claire, Chang, Philip, Stewart, CB
• Format: Journal Article
• Language: English
• Published: Elsevier Inc 01.05.2024
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2024.02.109

1. Participants will better understand the distinct spiritual and existential challenges faced by pediatric burn patients, especially those stemming from fire-related religious practices. 2. Participants will be able to identify how interdisciplinary collaboration between pediatric palliative care, spiritual care, and burn surgery specialists can effectively identify and address key themes like meaning-making and identity in pediatric burn cases. Pediatric burns cases, particularly those arising from fire-related religious or spiritual practices, present unique spiritual and existential challenges. Through interdisciplinary collaboration among pediatric palliative care, spiritual care, and burn specialists at a dedicated pediatric burn center, we reveal essential themes, such as meaning-making and identity. We provide example illustrative language for interdisciplinary pediatric palliative care clinicians to address these topics. Burn and thermal injuries significantly contribute to pediatric mortality rates in the United States, often requiring comprehensive and nuanced medical care. Additionally, a distinct set of spiritual and existential concerns exist in this population. We present a complex case of a pediatric patient admitted to our specialized burn center, whose injury stemmed from a spiritual practice, unveiling profound spiritual and existential themes addressed by our interdisciplinary pediatric palliative care (PPC) team. RK, a 7-year-old girl from the Orthodox Jewish tradition, was referred to our dedicated burn center and subsequently admitted to the pediatric intensive care unit (PICU) following a 56% total body surface area burn, originating from the use of candles during the observance of the Jewish Sabbath (Shabbat). The PPC team became involved early in her admission to assist in navigating complex symptom management, and addressing the spiritual and existential distress related to her injury. Unfortunately, RK's clinical trajectory deteriorated, culminating in her death in the PICU. This case prompted the emergence of distinct palliative care approaches in the context of burn injuries, with insights from the PPC, spiritual care, and burn surgery teams. This case underscores the distinctive spiritual and existential dimensions of pediatric burn and thermal injury patients, especially those resulting from fire-related religious or spiritual practices. Through the collaborative efforts of the interdisciplinary PPC, spiritual care, and burn surgery teams within a specialized burn center, we delineate key themes to consider while addressing the spiritual and existential distress of a child with burn injury and her family, including (and not limited to): meaning-making, faith and belief system exploration, and rituals and sacraments. Existential questions surrounding identity and disfigurement also emerged as crucial themes. We provide illustrative language examples for palliative care clinicians to address this distress in a comprehensive and family-centered approach. Existential / Humanities / Spirituality / Religion; Surgical Palliative Care