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.

Keywords: end-of-life; palliative care; pediatric; symptom management.

Figure 1

Frequency of symptoms (%) related to the underlying disorder. Figure legend: The first (lower) bracket comprises the group of non-oncological diseases (columns 2–6). These five diseases were compared to the neoplasm group (column 1). The second (upper) bracket indicates the significance of the difference regarding a given symptom (shortness of breath, pain, nausea/vomiting) between patients with oncological and non-oncological diseases. (a) Frequency of shortness of breath (%) related to the underlying disorder. We found no significant differences between oncological and non-oncological conditions. (b) Frequency of pain (%) related to the underlying disorder. A significant higher number of oncological patients suffered from pain compared to other conditions. (c) Frequency of nausea/vomiting (%) related to the underlying disorder. A significantly higher number of oncological patients suffered from nausea/vomiting compared to other conditions.

Figure 1

Frequency of symptoms (%) related to the underlying disorder. Figure legend: The first (lower) bracket comprises the group of non-oncological diseases (columns 2–6). These five diseases were compared to the neoplasm group (column 1). The second (upper) bracket indicates the significance of the difference regarding a given symptom (shortness of breath, pain, nausea/vomiting) between patients with oncological and non-oncological diseases. (a) Frequency of shortness of breath (%) related to the underlying disorder. We found no significant differences between oncological and non-oncological conditions. (b) Frequency of pain (%) related to the underlying disorder. A significant higher number of oncological patients suffered from pain compared to other conditions. (c) Frequency of nausea/vomiting (%) related to the underlying disorder. A significantly higher number of oncological patients suffered from nausea/vomiting compared to other conditions.