Symptom Burden
A landmark paper in pediatric palliative care described the significant presence of symptoms and suffering at the EOL. This study also found that parents were more likely than physicians to report the presence of these physical symptoms. Death from a brain tumor is usually an expected event, yet the multitude of symptoms and care needs can be overwhelming for the patient and family. As end-of-life approaches, suffering becomes more severe and neuro-oncology teams are called upon to manage complex palliative pain and symptoms.
A recent review of symptoms at EOL identified that the mean number of physical symptoms per child was 6.3 and the most frequently reported symptoms were pain, poor appetite, fatigue, lack of mobility, and vomiting. In this study, patients with brain tumors more frequently reported symptoms of incontinence compared to patients with leukemia or solid tumors. In another study that interviewed parents 4–9 years after the death of their child, more than one third of parents felt their child had unrelieved pain near the EOL and more than half of these parents were still affected by this experience. This further highlights the need for adequate management of physical symptoms.
Jalmsell et al. conducted a retrospective study surveying bereaved parents to determine symptoms at EOL for children with cancer. Thirty-five percent of children in this study died from a brain tumor. Fatigue was reported as being the most debilitating symptom impacting on well-being in the last month of life. Fatigue is multifactorial, unrelieved by rest, and not related to quality of sleep. Children with BT experienced less pain and more diffi culties related to bulbar weakness, impaired mobility, and constipation compared to children with leukemia/lymphoma. Loss of appetite and weight loss were not prominent symptoms of children with BT as compared to children with other malignant disease. Pritchard et al. identified in their study that bereaved parents reported changes in the child’s behavior and appearance at EOL as being of great concern.