Symptoms and medication management in the end of life phase of high-grade glioma patients

Abstract

During the end of life (EOL) phase of high-grade glioma (HGG) patients, care is primarily aimed at reducing symptom burden while maintaining quality of life as long as possible. In this study, we evaluated the prevalence of symptoms and medication management in HGG patients during the EOL phase. We analyzed disease-specific symptoms, general EOL symptoms, symptom frequency, and medication use at 3 months and 1 week before death in a cohort of 178 HGG patients, based on questionnaires completed by physicians responsible for EOL care. In addition, information on patient's perceived quality of care (QOC) was derived from 87 questionnaires completed by patient's relatives. Somnolence, focal neurological deficits and cognitive disturbances were the most prevalent symptoms during the EOL phase. Overall, disease-specific symptoms occurred more often than general EOL symptoms at both 3 months and 1 week before death. Somnolence and/or dysphagia were present in 81 % of patients whose medication was withdrawn and 96 % of patients in whom antiepileptic drugs (AEDs) were withdrawn. One week before death, 65.9 % of patients with high symptom frequency experienced good QOC, compared to 87.5 % of patients with low symptom frequency (p = 0.032). Disease-specific symptoms are the main concern in EOL care for HGG patients. Somnolence and dysphagia may hamper the regular oral administration of drugs, and particularly AEDs, during the EOL phase. High symptom frequency at 1 week before death negatively affects patient's perceived QOC.

European Association for Neuro-Oncology (EANO) guidelines for palliative care in adults with glioma

“…The most frequent treatment for headache in glioma patients is the use of corticosteroids (56-87%) 6,7 , usually dexamethasone in conjunction with gastric protection (81-86%). 7,8 Dexamethasone once a day is the preferred corticosteroid based on side-effect profile, but still has a wide range of side-effects (e.g., Cushing effect, muscle weakness and diabetes mellitus), increasing with higher dose and longer duration of treatment.…”

“…These respiratory symptoms have been reported in 12-23% of brain tumour patients in the last weeks of life and may severely affect a peaceful process of dying, particularly disturbing caregiver and family. 6,65 Treatment may involve change of posture to drain saliva, or medication with injectable scopolamine, an anticholinergic agent. A Cochrane review, however, concluded that there was no evidence for the benefit of any pharmacological intervention for the treatment of death rattle.…”

Advance Care Planning in Glioblastoma Patients

“…Disease-specific symptoms in the last weeks of the EOL phase include epilepsy, headache, drowsiness, dysphagia, and cognitive disturbances like agitation and delirium [41,45,46,47]. These symptoms occur more often in glioma patients than general EOL symptoms as commonly seen in patients with systemic cancers, such as fatigue, pain, nausea, constipation and dyspnea [41,47,48]. Glioma patients with more symptoms in the week preceding death experience a lower quality of care compared to patients with fewer symptoms [48].…”

“…These symptoms occur more often in glioma patients than general EOL symptoms as commonly seen in patients with systemic cancers, such as fatigue, pain, nausea, constipation and dyspnea [41,47,48]. Glioma patients with more symptoms in the week preceding death experience a lower quality of care compared to patients with fewer symptoms [48]. In addition, motor disability and cognitive decline negatively contribute to the patient’s quality of life and social well-being.…”

“…When the EOL approaches, an increasing number of glioma patients will become somnolent or even lose consciousness [45,48]. Dysphagia as a consequence of somnolence and loss of consciousness, may particularly hamper the regular intake of oral drugs [45,48].…”