End-of-life care for glioma patients; the caregivers' perspective

PURPOSE Gliomas are primary brain tumors with a life-limiting course of disease, and the last weeks of life are often characterized by neurological deficits that affect communication and personality. End-of-life treatment in this patient group therefore requires specific approaches. To date, little data is available on patients' and caregivers' needs and experiences in the last phase of the disease. METHODS In this observational study, relatives of patients treated at the University Hospital Zurich, Switzerland and deceased 2015-2017 due to glioma progression were contacted to complete a structured questionnaire assessing caregivers experience within the last weeks of the disease. RESULTS The survey was sent to 120 relatives of deceased patients with a glioma (WHO grades II-IV) (median patient age: 62 years; 73.8% male). Forty-three questionnaires were returned (37.7%). Approximately half of the patients were taken care of at home in the last 4 weeks of the disease, mainly with the assistance of in-home nursing care, of which eventually 14 patients (63.6%) died at home. While caregivers reported high satisfaction with medical and nursing care, psychological support was rated average to poor on a 10-point scale. Free comment fields were used widely, revealing open questions and needs of the relatives. CONCLUSIONS This study illustrates the need for a more patient-centered end-of-life care including higher psychological support mechanisms, and a higher inclusion and consideration of relatives and caregivers into the care focus. Earlier discussion of end-of-life preferences could prevent hospitalizations in the last phase of life and could improve patients' and caregivers' quality of life