Cultural or Spiritual End-of-Life Practice Preference Assessment and Documentation

Communities use rituals at end of life to foster a peaceful death, ensure passage to the afterlife, and grieve their lost loved ones. Studies report fear of misunderstanding or impeding rituals as a barrier to accepting hospice care. However, there has been little research on cultural and spiritual rituals in the setting of hospice care or how patient preference should be assessed, documented, and supported by hospice staff. This project sought to identify the current practice for assessment of cultural or spiritual end-of-life practice preferences, and the documentation of those preferences, within pediatric hospice programs in a Midwestern state. In surveys of 2 pediatric hospice programs, employee respondents reported routine assessment (97.3%) and routine documentation (70.3%) of cultural or spiritual end-of-life practice preferences. Most respondents reported documentation was written by various disciplines and in various locations in the medical record. Additionally, a retrospective chart review was performed including decedents of 1 pediatric hospice program over a 5-year period. Documentation affirming familial spiritual beliefs was identified in 75.9% of charts, of which, only 12.2% had documentation regarding end-of-life-specific spiritual needs. Standardized documentation practices may help foster equitable hospice care for all patients by ensuring care providers are aware of the patient and/or family's end-of-life spiritual needs.