Clinical Characteristics of the End-of-Life Phase in Children with Life-Limiting Diseases: Retrospective Study from a Single Center for Pediatric Palliative Care

Abstract

Background: Data on the end-of-life phase of children receiving palliative care are limited. The purpose of this study is to investigate the spectrum of symptoms of terminally ill children, adolescents, and young adults, depending on their underlying disease. Methods: Findings are based on a 4.5-year retrospective study of 89 children who received palliative care before they died, investigating the symptomatology of the last two weeks before death. Results: In this study, the most common clinical symptomatology present in children undergoing end-of-life care includes pain, shortness of breath, anxiety, nausea, and constipation. Out of 89 patients included in this study, 47% suffered from an oncological disease. Oncological patients had a significantly higher symptom burden at the end of life (p < 0.05) compared to other groups, and the intensity of symptoms increased as the underlying disease progressed. The likelihood of experiencing pain and nausea/vomiting was also significantly higher in oncological patients (p = 0.016). Conclusions: We found that the underlying disease is associated with marked differences in the respective leading clinical symptom. Therefore, related to these differences, symptom management has to be adjusted according to the underlying disease, since the underlying disorder seems to exert an influence on the severity of symptoms and thereby on the modality and choice of treatment. This study is intended to aid underlying disease-specific symptom management at the end-of-life care for children, adolescents, and young adults, with a specific focus on end-of-life care in a home environment.

The funding of specialised paediatric palliative care in Switzerland: a conceptualisation and modified Delphi study on obstacles and priorities

“…Generally, compared with the total number of hospitalised patients, high-deficit outliers are a small number of patients that cause a substantial proportion of total inpatient stay costs [49][50][51]. Considering that specialised paediatric palliative care cases are often highly complex [52], highdeficit outliers can be expected to be more prevalent in this patient population. Sufficient reimbursement of these patients' treatment costs should thus be ensured.…”

Participatory Design of a Medication Module in an Electronic Medical Record for Paediatric Palliative Care: A Think-Aloud Approach with Nurses and Physicians

“…In this regard, oncological diseases account for a smaller proportion of complex diseases [ 8 ]. One area in which PPC focuses is the management and alleviation of symptoms such as pain [ 9 ], anxiety and restlessness, [ 10 ] and sleep disturbances [ 11 ].…”

Palliative Care for Childhood Cancer

“…Most pediatric palliative care teams provide care for children with different underlying diseases, malignant as well as non-malignant. Baumann et al looked at the symptoms of 89 terminally ill children, nearly half of whom had an oncological disease [ 4 ]. They found that oncological patients had a significantly higher symptom burden at the end of life, the intensity of which increased as underlying disease progressed, and the likelihood of experiencing pain and nausea/vomiting was significantly higher in the oncological patients.…”