A Review of Pediatric Palliative Care Service Utilization in Children With a Progressive Neuromuscular Disease Who Died on a Palliative Care Program

Abstract

Recent studies and consensus statements have expressed the need to involve palliative care services in the care of children with progressive neuromuscular diseases (PMD), yet there have been no reviews of the utilization of palliative care services by children who died on a palliative care program. We conducted a retrospective chart review of all children who had a PMD who died on a single-center palliative care program. Twenty cases were identified. Services utilized by these patients included respite care, transition services, pain and symptom management, and end-of-life care. Prominent symptoms in the last 24 hours of life included respiratory distress, pain, nausea/vomiting, and anxiety; however, symptom management was very good. Utilization of services differed depending on the disease trajectory, with respite playing a critical role in the care of children with PMD. Good symptom management can be achieved.

Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions

“…Results from this study are supported by the literature in a number of ways, including the plethora of medications given to these children 3 16 17. One of the most striking findings is the children's large symptom experience.…”

Pediatric Palliative Care: Current Evidence and Evidence Gaps

“…31 Prominent symptoms in the last 24 hours of life include respiratory distress, pain, nausea, vomiting, and anxiety. 32 One study found that children who die of advanced Vol. 166, No.…”

Pediatric Palliative Care Programs in Children’s Hospitals: A Cross-Sectional National Survey

“…24,25 Despite the increasing prominence of PPC programs in US hospitals, however, information on the numberand scope of these programs is sparse, with the most recent study of program prevalence now 7 years old, and this limited to Children' s Oncology Group institutions. [26][27][28][29] In contrast, the proliferation of adult palliative care programs has been tracked more closely, demonstrating that over the past decade the number of adult programs has more than doubled (although availability varies from state to state). [30][31][32] More detailed characterizations of adult palliative care have also been published.…”