Home-Based Palliative Care for Children — Part 2: The Benefits of an Established Program

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Abstract
Thirty-four patients have been admitted to our palliative care program since its institution in March 1986. Five were unsuitable and were withdrawn soon after admission. Of the remainder, 22 (75.9%) had central nervous system (CNS) tumors, 5 (17.2%) had myelomeningocoele, 1 (3.45%) had an arteriovenous (AV) malformation, and 1 (3.45%) had a storage disease. Twenty-five (86.2%) have since died and 17 (68%) of these have died at home. In comparison with a similar group of 30 patients studied in a feasibility study prior to the institution of our program, patients admitted to our palliative care program were hospitalized for significantly fewer days during the terminal phase of their illness (p<0.05) and a significantly higher proportion died at home (p<0.001). Following a survey of the parents of 14 children diagnosed with CNS tumors who died while under our care, we determined that the overall level of satisfaction with the program was high compared to care provided prior to admission to the program (p<0.01). Components of the program deemed most satisfactory were (1) being able to care for the child at home (p<0.01), (2) having access to a palliative care nurse (p<0.05), and (3) having access to a pediatric clinical pharmacologist (p<0.05). The most troublesome symptoms occurring in this group of patients were pain, gastrointestinal symptoms, and seizures. Most problems were adequately managed by the parents under the supervision of the team. Eighty percent of the terminal care for these patients was provided at home. Twelve of the 14 patients (85.7%) ultimately died at home. Our data show that parents can readily acquire the skills necessary to care for their children at home, under the supervision of a palliative care team directed by a nurse and a physician familiar with drug therapy for terminally ill children. In addition, overall parental satisfaction with this type of program is high.