Abstract
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.
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References
Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ (2010) Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 363:733–742. https://doi.org/10.1056/NEJMoa1000678
Walbert T, Pace A (2016) End-of-life care in patients with primary malignant brain tumors: early is better. Neuro-oncology 18:7–8. https://doi.org/10.1093/neuonc/nov241
Gramatzki D, Dehler S, Rushing EJ, Zaugg K, Hofer S, Yonekawa Y, Bertalanffy H, Valavanis A, Korol D, Rohrmann S, Pless M, Oberle J, Roth P, Ohgaki H, Weller M (2016) Glioblastoma in the Canton of Zurich, Switzerland revisited: 2005 to 2009. Cancer 122:2206–2215. https://doi.org/10.1002/cncr.30023
Taphoorn MJ, Klein M (2004) Cognitive deficits in adult patients with brain tumours. Lancet Neurol 3:159–168. https://doi.org/10.1016/S1474-4422(04)00680-5
Breitbart W, Alici Y (2012) Evidence-based treatment of delirium in patients with cancer. J Clin Oncol 30:1206–1214. https://doi.org/10.1200/JCO.2011.39.8784
Lawlor PG, Gagnon B, Mancini IL, Pereira JL, Hanson J, Suarez-Almazor ME, Bruera ED (2000) Occurrence, causes, and outcome of delirium in patients with advanced cancer: a prospective study. Arch Intern Med 160:786–794
Koekkoek JA, Dirven L, Sizoo EM, Pasman HR, Heimans JJ, Postma TJ, Deliens L, Grant R, McNamara S, Stockhammer G, Medicus E, Taphoorn MJ, Reijneveld JC (2014) Symptoms and medication management in the end of life phase of high-grade glioma patients. J Neurooncol 120:589–595. https://doi.org/10.1007/s11060-014-1591-2
Pace A, Dirven L, Koekkoek JAF, Golla H, Fleming J, Ruda R, Marosi C, Le Rhun E, Grant R, Oliver K, Oberg I, Bulbeck HJ, Rooney AG, Henriksson R, Pasman HRW, Oberndorfer S, Weller M, Taphoorn MJB, E Association of Neuro-Oncology palliative care task f (2017) European Association for Neuro-Oncology (EANO) guidelines for palliative care in adults with glioma. Lancet Oncol 18:e330–e340. https://doi.org/10.1016/S1470-2045(17)30345-5
Ferrell BR, Temel JS, Temin S, Alesi ER, Balboni TA, Basch EM, Firn JI, Paice JA, Peppercorn JM, Phillips T, Stovall EL, Zimmermann C, Smith TJ (2017) Integration of Palliative Care Into Standard Oncology Care: American Society of Clinical Oncology Clinical Practice Guideline Update. J Clin Oncol 35:96–112. https://doi.org/10.1200/JCO.2016.70.1474
Walbert T, Glantz M, Schultz L, Puduvalli VK (2016) Impact of provider level, training and gender on the utilization of palliative care and hospice in neuro-oncology: a North-American survey. J Neurooncol 126:337–345. https://doi.org/10.1007/s11060-015-1973-0
Heese O, Vogeler E, Martens T, Schnell O, Tonn JC, Simon M, Schramm J, Krex D, Schackert G, Reithmeier T, Nikkhah G, Sabel M, Steiger HJ, Schlegel U, Loffler M, Weller M, Westphal M, German Glioma N (2013) End-of-life caregivers' perception of medical and psychological support during the final weeks of glioma patients: a questionnaire-based survey. Neuro-oncology 15:1251–1256. https://doi.org/10.1093/neuonc/not089
Bahler C, Signorell A, Blozik E, Reich O (2018) Intensity of treatment in Swiss cancer patients at the end-of-life. Cancer Manag Res 10:481–491. https://doi.org/10.2147/CMAR.S156566
Prigerson HG, Bao Y, Shah MA, Paulk ME, LeBlanc TW, Schneider BJ, Garrido MM, Reid MC, Berlin DA, Adelson KB, Neugut AI, Maciejewski PK (2015) Chemotherapy use, performance status, and quality of life at the end of life. JAMA Oncol 1:778–784. https://doi.org/10.1001/jamaoncol.2015.2378
Diamond EL, Russell D, Kryza-Lacombe M, Bowles KH, Applebaum AJ, Dennis J, DeAngelis LM, Prigerson HG (2016) Rates and risks for late referral to hospice in patients with primary malignant brain tumors. Neuro-oncology 18:78–86. https://doi.org/10.1093/neuonc/nov156
Walbert T, Puduvalli VK, Taphoorn MJB, Taylor AR, Jalali R (2015) International patterns of palliative care in neuro-oncology: a survey of physician members of the Asian Society for Neuro-Oncology, the European Association of Neuro-Oncology, and the Society for Neuro-Oncology. Neurooncol Pract 2:62–69. https://doi.org/10.1093/nop/npu037
Flechl B, Ackerl M, Sax C, Oberndorfer S, Calabek B, Sizoo E, Reijneveld J, Crevenna R, Keilani M, Gaiger A, Dieckmann K, Preusser M, Taphoorn MJ, Marosi C (2013) The caregivers' perspective on the end-of-life phase of glioblastoma patients. J Neurooncol 112:403–411. https://doi.org/10.1007/s11060-013-1069-7
Sizoo EM, Braam L, Postma TJ, Pasman HR, Heimans JJ, Klein M, Reijneveld JC, Taphoorn MJ (2010) Symptoms and problems in the end-of-life phase of high-grade glioma patients. Neuro-oncology 12:1162–1166. https://doi.org/10.1093/neuonc/nop045
Pace A, Di Lorenzo C, Capon A, Villani V, Benincasa D, Guariglia L, Salvati M, Brogna C, Mantini V, Mastromattei A, Pompili A (2012) Quality of care and rehospitalization rate in the last stage of disease in brain tumor patients assisted at home: a cost effectiveness study. J Palliat Med 15:225–227. https://doi.org/10.1089/jpm.2011.0306
Schubart JR, Kinzie MB, Farace E (2008) Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro-oncology 10:61–72. https://doi.org/10.1215/15228517-2007-040
Acknowledgements
The authors thank Oliver Heese for advice in data collection and all participating relatives of our patients.
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Supported by a Grant from the Swiss Brain Tumor Foundation.
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Hertler, C., Eisele, G., Gramatzki, D. et al. End-of-life care for glioma patients; the caregivers’ perspective. J Neurooncol 147, 663–669 (2020). https://doi.org/10.1007/s11060-020-03471-2
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DOI: https://doi.org/10.1007/s11060-020-03471-2