. "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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their own pace, parents may wish to bathe or dress the child as one of their last physical acts of being the child’s mother or father.
Families may wish to accompany their child’s body to the morgue, and in some states, they can themselves take the body to the funeral home. Even after the child has been taken to the hospital morgue, it is not unknown for parents to ask to see the child once more or to make the request for family members who could not get to the hospital earlier. If it is expected that parents will see their child after an autopsy (e.g., to dress the child before the funeral), the child’s physician, funeral home staff, or other aware personnel should prepare the family for what they will see (Cacciatore-Garard, 2001). Depending on family preferences or religious values, funeral homes may provide physical services after a child’s death, for example, preparing the body for viewing before or at a funeral.
THE EMOTIONAL AND PSYCHOLOGICAL DIMENSIONS OF CARE
It’s okay to be sad. It’s okay to be mad. It’s okay to cry. It’s okay to laugh.
Ross, young cancer patient (Lewis, 1992).
Just as children with life-threatening problems need specialized medical and nursing assessments of their physical status and symptoms, they should also have a psychological evaluation in order to plan for truly comprehensive care. The broad elements of comprehensive psychological and emotional care include the following:
evaluation of the child’s psychological status and identification of psychological symptoms or disorders;
provision of appropriate psychotherapy, psychotropic medications, or behavioral interventions as an integral part of the child’s overall care;
advice for the child’s physician, parents, and others on additional strategies or steps that they can take to manage or minimize emotional distress;
evaluation of the child’s parents and siblings (and sometimes other family members) for psychological symptoms;
referral as appropriate to support groups for ill children, healthy siblings and parents that allow them to share experiences in living with serious illness; and
bereavement support for the family after the child’s death.
As discussed in Chapter 6, child psychologists, psychiatrists, and other mental health professionals can provide unique knowledge and skills that