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not mention palliative care (AAP, 1991). The recent AAP policy statement on palliative care strongly endorses offering such care early in the course of illness for children with an “ultimately terminal condition” (AAP, 2000g). In addition, recent AAP (2001b) guidelines for pediatric emergency medical facilities called for explicit policies related to death in the emergency department and to DNR orders. Unlike earlier (1995) guidelines, the new guidelines do not explicitly mention support and follow-up for grieving families.
Although children’s hospitals may emphasize child- and family-friendly environments, one area of concern has been the harsh nature of the traditional NICU with its bright lights, noise, frequent handling, and frequent invasive and painful procedures. Parents of premature infants have noted the lack of research justifying the traditional NICU environment and urged less invasive care and more access for parents and other family members (Harrison, 1993). Recent AAP (2000a) guidelines on the prevention and management of pain and stress in neonates mention the need to minimize noxious environmental stimuli, and an earlier statement focused specifically on noise (AAP, 1997c). Such efforts to “humanize” neonatal intensive care should benefit all fragile neonates—those who survive and those who die—and their families. They also provide an opportunity for research to assess and improve infant quality of life as well as to reduce morbidity and mortality.
The social environment of neonatal and pediatric intensive care may also be unfriendly. For example, time and space restrictions on family access to a critically ill or injured child—especially when death is imminent—may add to the family’s emotional and spiritual distress and increase its suffering after the child’s death. Thus, the Canadian Pediatric Society’s guidelines on care for families experiencing perinatal loss recommend that “visiting policies should be around the clock, including during bedside rounds” (CPS, 2001, p. 471). The guidelines also state that families should have time and a private place to be with their baby after death.
A recent survey of children’s hospitals in the United States found that over 80 percent of the respondents reported open visitation policies for parents with children in NICUs, PICUs, and general inpatient units (Susan Dull, NACHRI, personal communication, July 16, 2002, based on data from George Little and JM Harris, II). Approximately 70 percent reported policies allowing parent access to the child’s medical record in the NICU or PICU; about two-thirds reported involving parents in the development of the child’s care plan.
Availability of Inpatient Palliative Care and Hospice Programs
A number of children’s hospitals have created inpatient palliative care or hospice programs, but they do not appear to be the norm. In preparing