. "5. Care and Caring From Diagnosis Through Death and Bereavement." When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press, 2003.
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of the sick” (traditionally called “extreme unction” or “last rites”) in the Roman Catholic and Orthodox Christian faiths. Hospital chapels may be offered for memorial services. Hospice chaplains regularly officiate at services for children who have died. Religious groups also sponsor many hospitals, hospices, and other health care organizations and organize a variety of community-based supportive services—spiritual and practical— for individuals and families facing serious medical problems. When children are cared for at medical centers far from home, hospital chaplains may help link families to nearby faith communities for support.
The role of spiritual care in overall patient care is recognized in hospital accreditation standards (JCAHO, 1998)3 and Medicare hospice requirements (HCFA/CMS, 1994). Medicare and other insurance programs do not, however, reimburse separately for religious counseling or other chaplain services, which increases their vulnerability to cutbacks when institutions are under acute fiscal pressure. The involvement of chaplains in spiritual care for dying patients and their families has been little studied in inpatient or home settings, even for adults (Bryant, 1993; Daaleman and Frey, 1998).
Although this discussion focuses on the role of chaplains, families also rely on their own ministers, rabbis, or other sources of spiritual comfort and enrichment. More broadly, “pastoral care” that involves the whole faith community, including lay persons, can expand the spiritual resources available for seriously ill and dying people and their families (Shelp, 2001).
Physicians, nurses, and others have sometimes been uncertain about their appropriate religious or spiritual role or connection with patients, for example, whether or when to offer to pray with them (see, e.g., Post et al., 2000; Feldstein, 2001). Such spiritual care can be profoundly comforting and may be welcomed by some patients (see, e.g., Daaleman and Nease, 1994; Dagi, 1995; Ehman et al., 1999). Still, spiritual support from clinicians has the potential, if offered insensitively, to be offensive and damaging. As suggested elsewhere, at a minimum, “the clinician’s role is . . . to avoid obstructing spiritual explorations. Such obstruction is unlikely to be willful but instead to reflect the clinician’s own discomfort with death as an existential phenomenon rather than a technical problem to be analyzed and solved” (IOM, 1997, p. 79).
The hazards of well-intentioned but insensitive involvement by clinical personnel in spiritual matters are cited in an employee handout from a religious health care system. It describes the case of a respiratory therapist
Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) Standard RI.1.3 “The hospital demonstrates respect for the following patient needs: . . . [RI.1.3.5] Pastoral care and other spiritual services” (RI = Rights and Organizational Ethics).