Spiritual, Religious and Existential Aspects of Care

When a child dies, parents and families attempt to make meaning in the midst of the crisis. They may avoid, cling to, or relate ambivalently in their spiritual and religious expressions[245]. Spiritual beliefs, religious practices, ceremonies and prayer may be a source of support and comfort to families at the time of death, may aid with coping[246] and provide hope[245]. Religion and spirituality may also provide an aspect of peace, guide end-of-life decision-making, and assist in incorporating the death into the family member’s psyche[247-250].

Asking open-ended questions such as “What are your beliefs and how can we meet your spiritual needs?” is more effective than “Do you want your baby to be baptized?”  or “Do you need a chaplain?” Religious references, even though well-intentioned, may cause offense. Families should be reassured that spiritual crises and questions such as “why me?” or “what did I do wrong?” are part of normal grief reactions[15].

It may be helpful to a family to have their own priest or religious leader at their baby’s bedside to pray or administer a naming ceremony, baptism or a blessing. Ceremonies differ, although most cultures accept and view prayer or rites by a religious leader to be important.  Customs and rituals of the individual family should be honored[251].

Ethnicity and religion may also influence the acceptability of withdrawal of intensive treatment[252].

As part of bereavement support checklist, the nursing staff should be responsible for contacting the hospital chaplain for every death, no matter what the family's faith tradition. Contact should be made prior to the infant's death, if possible.  Board certified hospital chaplains are trained to make an assessment and provide the family with resources for the appropriate faith tradition. The chaplain should also be contacted to arrange any special services in the hospital for the infant and family.