"Let's Bring Her Home First." Patient Characteristics and Place of Death in Specialized Pediatric Palliative Home Care

Abstract

Context: Specialized pediatric palliative home care (SPPHC) is the main pediatric palliative care structure in Germany. Detailed data on patient characteristics and care are sparse. Describing this population in terms of diagnoses and care needs is essential for further development of palliative care services for these patients.

Objectives: We asked whether the population at our center 1) was representative compared with national mortality statistics; 2) showed differences in the clinical course among the four diagnostic categories established by the Association for Children with Terminal Conditions/Royal College of Paediatrics and Child Health; and 3) was different to published populations in pediatric palliative care regarding diagnoses, care, and place of death.

Methods: Retrospective single center chart analysis of 212 consecutive patients on SPPHC (2009-2015).

Results: Main International Statistical Classification of Diseases and Related Health Problems, 10th Revision groups were nervous system, congenital abnormalities, neoplasia, and metabolic disease, reflecting the mortality statistics for patients one to 20 years. Thirty-six percent of patients were assigned to ACT-3, 34% to ACT-4, 26% to ACT-1, and 4% to ACT-2. ACT-1 patients mostly needed high-intensity care for short durations, ACT-4 patients showed long survival times with mostly intermittent care. Seventy-five percent of patients showed nervous system involvement. Eighty-four percent died at home, 12% in hospital, and 4% in a hospice, with 96% dying at their preferred place.

Conclusion: Our data on SPPHC show 1) significant differences between Association for Children with Terminal Conditions/Royal College of Paediatrics and Child Health groups in terms of care needs and survival; 2) a high prevalence of children with neurological problems; and 3) a large majority of children dying at home.

Keywords: ACT categories; Specialized pediatric palliative care; diagnosis; home care; nervous system; place of death.