Matters of spirituality at the end of life in the pediatric intensive care unit

Abstract

Objective: Our objective with this study was to identify the nature and the role of spirituality from the parents' perspective at the end of life in the PICU and to discern clinical implications.

Methods: A qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires was conducted at 3 PICUs in Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after the withdrawal of life-sustaining therapies participated.

Results: Overall, spiritual/religious themes were included in the responses of 73% (41 of 56) of parents to questions about what had been most helpful to them and what advice they would offer to others at the end of life. Four explicitly spiritual/religious themes emerged: prayer, faith, access to and care from clergy, and belief in the transcendent quality of the parent-child relationship that endures beyond death. Parents also identified several implicitly spiritual/religious themes, including insight and wisdom; reliance on values; and virtues such as hope, trust, and love.

Conclusions: Many parents drew on and relied on their spirituality to guide them in end-of-life decision-making, to make meaning of the loss, and to sustain them emotionally. Despite the dominance of technology and medical discourse in the ICU, many parents experienced their child's end of life as a spiritual journey. Staff members, hospital chaplains, and community clergy are encouraged to be explicit in their hospitality to parents' spirituality and religious faith, to foster a culture of acceptance and integration of spiritual perspectives, and to work collaboratively to deliver spiritual care.