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Design and Participants: This descriptive qualitative study characterized the frequency and nature of spiritual statements in conferences between families and clinicians caring for infants with neurologic conditions. An existing dataset of audio-recorded, deidentified, transcribed family conferences was used. Inclusion criteria were 1) age less than 1 year, 2) a neurologic condition, and 3) planned conversation about neurologic prognosis or goals of care. Data were coded using a content analysis approach.
Results: In all, 68 conferences were held for 24 infants and 36 parents (aged median 31 yrs [range=19-43]; 58% Black, 36% White, 6% Asian). Eighty-nine percent of parents self-identified as spiritual. A mean of three conferences per patient occurred (range=1-8), with a median of six attendees per conference (range=2-9). Mothers were present in all conferences, fathers were present in over 50%, and extended family members were present over 25% of the time. A mean of five clinicians per conference were in attendance (range=1-10). A palliative care clinician was involved in most cases (58%) and present in most conferences (59%). While pastoral care was frequently involved in care (54%), chaplains were infrequently present in conferences (5.9%). References to spirituality occurred in 32% of conferences. Spiritual discussion included three domains: 1) spiritual beliefs and practices, 2) spiritual support, and 3) parent-child connection as sacred. Clinicians’ responses to family member spiritual statements were diverse and included providing affirmation or support (63%) and exploring goals of care (13%). In some instances, clinicians did not respond to the spiritual statement but rather continued discussing clinical information (25%).
Commentary: This study suggests that although most families identified as spiritual, spirituality was referenced in only one-third of family conferences—and 25% of spiritual references went unaddressed by clinicians. These findings highlight a missed opportunity: spiritual beliefs often guide parental decision making in the context of serious illness, yet clinicians lack consistent training in recognizing or responding to such expressions. A notable limitation of the study is that some coded “spiritual” statements—such as relational closeness or belief in one’s child—may not reflect actual spiritual beliefs or practices, pointing to the challenges of defining and coding spirituality in clinical contexts. As palliative care clinicians, we must deepen our understanding of spirituality, develop comfort with and skillfulness in identifying and responding to patient and family spirituality, and more routinely integrate chaplains into the care of families with spiritual needs.
Bottom Line: Accurate recognition of and response to family spirituality is a critical but often overlooked component of compassionate, goal-concordant care.
Reviewer: Rachel Kentor, PhD, Baylor College of Medicine/Texas Children’s Hospital, Houston, TX
References:
- Superdock AK, Barfield RC, Brandon DH, Docherty SL. Exploring the vagueness of religion & spirituality in complex pediatric decision-making: a qualitative study. BMC Palliat Care. 2018;17(1):107.
- Gradick K, October T, Pascoe D, Fleming J, Moore D. ‘I’m praying for a miracle’: characteristics of spiritual statements in paediatric intensive care unit care conferences. BMJ Support Palliat Care. 2022;12(e5):e680-e686.
Source: Peralta D, Nanduri N, Bansal S, et al. Discussion of spirituality in family conferences of infants with neurologic conditions. J Pain Symptom Manage. 2025;69(1):34-43.e1.
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