End-of-life symptoms and care in patients with primary malignant brain tumors: a systematic literature review.

The aim of this study was to review the literature on end-of-life symptoms and end-of-life care of adult patients with high-grade glioma (HGG). Despite aggressive treatment, the survival of HGG patients is limited. Symptom management is paramount to maintain maximum quality of life. The goal of this review is to identify the symptoms and the potential needs of brain tumor patients and their caretakers at the end of life. A systematic literature search in PubMed and Cochrane databases was performed for the years 1946 through August 6th, 2013. A total of 6,196 article citations were identified. Based on predefined criteria, 32 articles were retained for detailed examination. Of these 32 articles, only 7 focused on end-of-life symptoms and interventions. All 7 studies were retrospective and focused on inpatients (3), outpatients (2) or both (2). All but one study involved formal hospice. Drowsiness and loss of consciousness was the most common symptom (1-90 %). Poor communication (64 and 90 %), focal neurological deficits (3-62 %), seizures (3-56 %), dysphagia (7-85 %) and headaches (4-62 %) were also frequent. Only 4 studies reported on palliative interventions. Our systematic review shows that HGG patients in the end-of-life phase have a consistently high symptom burden especially during the last days of life. There is no prospective or conclusive literature describing end-of-life symptom management in HGG patients. Prospective research will be needed to further define symptoms and management in the end-of-life phase.