Andrea Pace1, Johan A F Koekkoek2,3, Martin J van den Bent4, Helen J Bulbeck5, Jane Fleming6, Robin Grant7, Heidrun Golla8, Roger Henriksson9, Simon Kerrigan10, Christine Marosi11, Ingela Oberg12, Stefan Oberndorfer13, Kathy Oliver14, H Roeline W Pasman15, Emilie Le Rhun16, Alasdair G Rooney17, Roberta Rudà18, Simone Veronese19, Tobias Walbert20, Michael Weller21, Wolfgang Wick22,23, Martin J B Taphoorn2,3, Linda Dirven2,3. 1. Neuro-Oncology Unit, IRCCS Regina Elena National Cancer Institute, Rome, Italy. 2. Department of Neurology, Leiden University Medical Center, Leiden, the Netherlands. 3. Department of Neurology, Haaglanden Medical Center, The Hague, the Netherlands. 4. Department of Neurology, The Brain Tumor Center, Erasmus Medical Center, Rotterdam, the Netherlands. 5. Brainstrust (The Brain Cancer People), Cowes, Isle of Wight, UK. 6. Department of Palliative Medicine, University Hospital Waterford, Waterford, Ireland. 7. Edinburgh Centre for Neuro-Oncology, Western General Hospital, Edinburgh, Scotland, UK. 8. Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany. 9. Department of Radiation Sciences and Oncology, Umeå University, Umeå, Sweden. 10. Salford Royal Foundation Trust, Manchester, UK. 11. Department of Internal Medicine I, Clinical Division of Medical Oncology, Medical University of Vienna, Vienna, Austria. 12. Department of Neuroscience, Cambridge University Hospitals, Cambridge, UK. 13. Department Neurology, University Clinic St Pölten, KLPU and KLI-Neurology and Neuropsychology, St Pölten, Austria. 14. International Brain Tumour Alliance, Tadworth, UK. 15. Department of Public and Occupational Health, Amsterdam Public Health Research Institute, Amsterdam University Medical Centers, Amsterdam, the Netherlands. 16. Department of Neurosurgery, University Hospital Zurich, Zurich, Switzerland. 17. Division of Psychiatry, University of Edinburgh, Royal Edinburgh Hospital, Edinburgh, Scotland, UK. 18. Department of Neuro-Oncology, University and City of Health and Science Hospital, Turin, Italy. 19. Department of Palliative Care, Fondazione FARO, Turin, Italy. 20. Department of Neurology and Neurosurgery, Henry Ford Health System, Detroit, Michigan, US. 21. Department of Neurology & Brain Tumor Center, University Hospital and University of Zurich, Zurich, Switzerland. 22. Neurology Clinic and National Centre for Tumour Diseases, University Hospital Heidelberg, Heidelberg, Germany. 23. German Consortium of Translational Cancer Research (DKTK), Clinical Cooperation Unit Neurooncology, German Cancer Research Center, Heidelberg, Germany.
Abstract
BACKGROUND: Brain tumor patients are at high risk of impaired medical decision-making capacity (MDC), which can be ethically challenging because it limits their ability to give informed consent to medical treatments or participation in research. The European Association of Neuro-Oncology Palliative Care Multidisciplinary Task Force performed a systematic review to identify relevant evidence with respect to MDC that could be used to give recommendations on how to cope with reduced MDC in brain tumor patients. METHODS: A literature search in several electronic databases was conducted up to September 2019, including studies with brain tumor and other neurological patients. Information related to the following topics was extracted: tools to measure MDC, consent to treatment or research, predictive patient- and treatment-related factors, surrogate decision making, and interventions to improve MDC. RESULTS: A total of 138 articles were deemed eligible. Several structured capacity-assessment instruments are available to aid clinical decision making. These instruments revealed a high incidence of impaired MDC both in brain tumors and other neurological diseases for treatment- and research-related decisions. Incapacity appeared to be mostly determined by the level of cognitive impairment. Surrogate decision making should be considered in case a patient lacks capacity, ensuring that the patient's "best interests" and wishes are guaranteed. Several methods are available that may help to enhance patients' consent capacity. CONCLUSIONS: Clinical recommendations on how to detect and manage reduced MDC in brain tumor patients were formulated, reflecting among others the timing of MDC assessments, methods to enhance patients' consent capacity, and alternative procedures, including surrogate consent.
BACKGROUND: Brain tumor patients are at high risk of impaired medical decision-making capacity (MDC), which can be ethically challenging because it limits their ability to give informed consent to medical treatments or participation in research. The European Association of Neuro-Oncology Palliative Care Multidisciplinary Task Force performed a systematic review to identify relevant evidence with respect to MDC that could be used to give recommendations on how to cope with reduced MDC in brain tumor patients. METHODS: A literature search in several electronic databases was conducted up to September 2019, including studies with brain tumor and other neurological patients. Information related to the following topics was extracted: tools to measure MDC, consent to treatment or research, predictive patient- and treatment-related factors, surrogate decision making, and interventions to improve MDC. RESULTS: A total of 138 articles were deemed eligible. Several structured capacity-assessment instruments are available to aid clinical decision making. These instruments revealed a high incidence of impaired MDC both in brain tumors and other neurological diseases for treatment- and research-related decisions. Incapacity appeared to be mostly determined by the level of cognitive impairment. Surrogate decision making should be considered in case a patient lacks capacity, ensuring that the patient's "best interests" and wishes are guaranteed. Several methods are available that may help to enhance patients' consent capacity. CONCLUSIONS: Clinical recommendations on how to detect and manage reduced MDC in brain tumor patients were formulated, reflecting among others the timing of MDC assessments, methods to enhance patients' consent capacity, and alternative procedures, including surrogate consent.
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