{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,1]],"date-time":"2026-09-01T07:20:06Z","timestamp":1788247206657,"version":"build-2803163510"},"reference-count":59,"publisher":"MDPI AG","issue":"11","license":[{"start":{"date-parts":[[2016,11,8]],"date-time":"2016-11-08T00:00:00Z","timestamp":1478563200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Cancers"],"abstract":"<jats:p>Despite multimodal treatment with surgery, radiotherapy and chemotherapy, glioblastoma is an incurable disease with a poor prognosis. During the disease course, glioblastoma patients may experience progressive neurological deficits, symptoms of increased intracranial pressure such as drowsiness and headache, incontinence, seizures and progressive cognitive dysfunction. These patients not only have cancer, but also a progressive brain disease. This may seriously interfere with their ability to make their own decisions regarding treatment. It is therefore warranted to involve glioblastoma patients early in the disease trajectory in treatment decision-making on their future care, including the end of life (EOL) care, which can be achieved with Advance Care Planning (ACP). Although ACP, by definition, aims at timely involvement of patients and proxies in decision-making on future care, the optimal moment to initiate ACP discussions in the disease trajectory of glioblastoma patients remains controversial. Moreover, the disease-specific content of these ACP discussions needs to be established. In this article, we will first describe the history of patient participation in treatment decision-making, including the shift towards ACP. Secondly, we will describe the possible role of ACP for glioblastoma patients, with the specific aim of treatment of disease-specific symptoms such as somnolence and dysphagia, epileptic seizures, headache, and personality changes, agitation and delirium in the EOL phase, and the importance of timing of ACP discussions in this patient population.<\/jats:p>","DOI":"10.3390\/cancers8110102","type":"journal-article","created":{"date-parts":[[2016,11,8]],"date-time":"2016-11-08T09:58:26Z","timestamp":1478599106000},"page":"102","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":49,"title":["Advance Care Planning in Glioblastoma Patients"],"prefix":"10.3390","volume":"8","author":[{"given":"Lara","family":"Fritz","sequence":"first","affiliation":[{"name":"Department of Neurology, Haaglanden Medical Center, P.O. BOX 432, 2501 CK The Hague, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Linda","family":"Dirven","sequence":"additional","affiliation":[{"name":"Department of Neurology, Leiden University Medical Center, P.O. BOX 9600, 2300 RC Leiden, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jaap","family":"Reijneveld","sequence":"additional","affiliation":[{"name":"Department of Neurology, VU University Medical Center, P.O. BOX 7057, 1007 MB Amsterdam, The Netherlands"},{"name":"Department of Neurology, Academic Medical Center, P.O. BOX 22660, 1100 DD Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Johan","family":"Koekkoek","sequence":"additional","affiliation":[{"name":"Department of Neurology, Haaglanden Medical Center, P.O. BOX 432, 2501 CK The Hague, The Netherlands"},{"name":"Department of Neurology, Leiden University Medical Center, P.O. BOX 9600, 2300 RC Leiden, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne","family":"Stiggelbout","sequence":"additional","affiliation":[{"name":"Department of Medical Decision Making\/Quality of Care, Leiden University Medical Center, P.O. BOX 9600, 2300 RC Leiden, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"H.","family":"Pasman","sequence":"additional","affiliation":[{"name":"Department of Public and Occupational Health, VU University Medical Center, P.O. BOX 7057, 1007 MB Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martin","family":"Taphoorn","sequence":"additional","affiliation":[{"name":"Department of Neurology, Haaglanden Medical Center, P.O. BOX 432, 2501 CK The Hague, The Netherlands"},{"name":"Department of Neurology, Leiden University Medical Center, P.O. BOX 9600, 2300 RC Leiden, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2016,11,8]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"2309","DOI":"10.1016\/j.ejca.2014.05.019","article-title":"Changing incidence and improved survival of gliomas","volume":"50","author":"Ho","year":"2014","journal-title":"Eur. J. Cancer"},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"1985","DOI":"10.1158\/1055-9965.EPI-14-0275","article-title":"Epidemiologic and molecular prognostic review of glioblastoma","volume":"23","author":"Thakkar","year":"2014","journal-title":"Cancer Epidemiol. Biomarkers Prev."},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"97","DOI":"10.1007\/s00401-007-0243-4","article-title":"The 2007 WHO Classification of Tumours of the Central Nervous System","volume":"114","author":"Louis","year":"2007","journal-title":"Acta Neuropathol."},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"1560","DOI":"10.1212\/WNL.0b013e3181f96282","article-title":"IDH1 or IDH2 mutations predict longer survival and response to temozolomide in low-grade gliomas","volume":"75","author":"Houillier","year":"2010","journal-title":"Neurology"},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"987","DOI":"10.1056\/NEJMoa043330","article-title":"Radiotherapy plus concomitant and adjuvant temozolomide for glioblastoma","volume":"352","author":"Stupp","year":"2005","journal-title":"N. Engl. J. Med."},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"803","DOI":"10.1007\/s00401-016-1545-1","article-title":"The 2016 World Health Organization classification of tumors of the central nervous system: A summary","volume":"131","author":"Louis","year":"2016","journal-title":"Acta Neuropathol."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"1062","DOI":"10.1007\/s12094-016-1497-x","article-title":"Survival in glioblastoma: A review on the impact of treatment modalities","volume":"18","year":"2016","journal-title":"Clin. Transl. Oncol."},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"323","DOI":"10.1016\/S0140-6736(03)12328-8","article-title":"Primary brain tumours in adults","volume":"361","author":"Behin","year":"2003","journal-title":"Lancet"},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"2086","DOI":"10.1212\/WNL.0b013e3181c67bce","article-title":"Medical decision-making capacity in patients with malignant glioma","volume":"73","author":"Triebel","year":"2009","journal-title":"Neurology"},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"226","DOI":"10.1016\/j.ejca.2011.11.010","article-title":"Decision-making in the end-of-life phase of high-grade glioma patients","volume":"48","author":"Sizoo","year":"2012","journal-title":"Eur. J. Cancer"},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"1145","DOI":"10.1093\/annonc\/mdp534","article-title":"Preferred and actual participation roles during health care decision making in persons with cancer: A systematic review","volume":"21","author":"Tariman","year":"2010","journal-title":"Ann. Oncol."},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"2221","DOI":"10.1001\/jama.1992.03480160079038","article-title":"Four models of the physician-patient relationship","volume":"267","author":"Emanuel","year":"1992","journal-title":"JAMA"},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"1865","DOI":"10.1016\/S0277-9536(00)00303-8","article-title":"Sharing decisions in cancer care","volume":"52","author":"Gattellari","year":"2001","journal-title":"Soc. Sci. Med."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"736","DOI":"10.1136\/bmj.327.7417.736","article-title":"Risk communication in practice: The contribution of decision aids","volume":"327","author":"Legare","year":"2003","journal-title":"Br. Med. J."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"515","DOI":"10.1016\/j.jpainsymman.2011.04.008","article-title":"Preferred and actual involvement of advanced lung cancer patients and their families in end-of-life decision making: A multicenter study in 13 hospitals in Flanders, Belgium","volume":"43","author":"Pardon","year":"2012","journal-title":"J. Pain Symptom Manag."},{"key":"ref_16","unstructured":"The Patient Self-Determination Act (PSDA) of 1991, Available online: https:\/\/www.gpo.gov\/fdsys\/pkg\/GAOREPORTS-HEHS-95-135\/pdf\/GAOREPORTS-HEHS-95-135.pdf."},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"355","DOI":"10.1016\/j.jpainsymman.2012.09.006","article-title":"Advance care planning beyond advance directives: Perspectives from patients and surrogates","volume":"46","author":"McMahan","year":"2013","journal-title":"J. Pain Symptom Manag."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"51","DOI":"10.7326\/0003-4819-147-1-200707030-00008","article-title":"Controlling death: The false promise of advance directives","volume":"147","author":"Perkins","year":"2007","journal-title":"Ann. Intern. Med."},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"1211","DOI":"10.1056\/NEJMsa0907901","article-title":"Advance directives and outcomes of surrogate decision making before death","volume":"362","author":"Silveira","year":"2010","journal-title":"N. Engl. J. Med."},{"key":"ref_20","doi-asserted-by":"crossref","unstructured":"Brom, L., Pasman, H.R., Widdershoven, G.A., van der Vorst, M.J., Reijneveld, J.C., Postma, T.J., and Onwuteaka-Philipsen, B.D. (2014). Patients\u2019 preferences for participation in treatment decision-making at the end of life: Qualitative interviews with advanced cancer patients. PLoS ONE, 9.","DOI":"10.1371\/journal.pone.0100435"},{"key":"ref_21","doi-asserted-by":"crossref","unstructured":"Andreassen, P., Neergaard, M.A., Brogaard, T., Skorstengaard, M.H., and Jensen, A.B. (2015). The diverse impact of advance care planning: A long-term follow-up study on patients\u2019 and relatives\u2019 experiences. BMJ Support Palliat. Care.","DOI":"10.1136\/bmjspcare-2015-000886"},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"1026","DOI":"10.1177\/0269216314531313","article-title":"Advance Care Planning in palliative care: A systematic literature review of the contextual factors influencing its uptake 2008\u20132012","volume":"8","author":"Lovell","year":"2014","journal-title":"Palliat. Med."},{"key":"ref_23","doi-asserted-by":"crossref","unstructured":"Buiting, H.M., Rurup, M.L., Wijsbek, H., van, Z.L., and den, H.G. (2011). Understanding provision of chemotherapy to patients with end stage cancer: Qualitative interview study. Br. Med. J.","DOI":"10.1136\/bmj.d1933"},{"key":"ref_24","doi-asserted-by":"crossref","unstructured":"Detering, K.M., Hancock, A.D., Reade, M.C., and Silvester, W. (2010). The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. Br. Med. J.","DOI":"10.1136\/bmj.c1345"},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"946","DOI":"10.1111\/j.1532-5415.2012.03917.x","article-title":"Effect of a disease-specific advance care planning intervention on end-of-life care","volume":"60","author":"Kirchhoff","year":"2012","journal-title":"J. Am. Geriatr. Soc."},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"23","DOI":"10.1177\/0269216306073638","article-title":"Acceptability of an advance care planning interview schedule: A focus group study","volume":"1","author":"Barnes","year":"2007","journal-title":"Palliat. Med."},{"key":"ref_27","doi-asserted-by":"crossref","first-page":"1547","DOI":"10.1111\/j.1532-5415.2009.02396.x","article-title":"Understanding advance care planning as a process of health behavior change","volume":"57","author":"Fried","year":"2009","journal-title":"J. Am. Geriatr. Soc."},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"3821","DOI":"10.1200\/JCO.2008.18.7294","article-title":"Progress in quality-of-care research and hope for supportive cancer care","volume":"26","author":"Lorenz","year":"2008","journal-title":"J. Clin. Oncol."},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"733","DOI":"10.1056\/NEJMoa1000678","article-title":"Early palliative care for patients with metastatic non-small-cell lung cancer","volume":"363","author":"Temel","year":"2010","journal-title":"N. Engl. J. Med."},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"383","DOI":"10.1001\/archinte.158.4.383","article-title":"Death and end-of-life planning in one midwestern community","volume":"158","author":"Hammes","year":"1998","journal-title":"Arch. Intern. Med."},{"key":"ref_31","doi-asserted-by":"crossref","first-page":"335","DOI":"10.1089\/109662104773709495","article-title":"Communication, trust, and making choices: Advance care planning four years on","volume":"7","author":"Romer","year":"2004","journal-title":"J. Palliat. Med."},{"key":"ref_32","doi-asserted-by":"crossref","first-page":"715","DOI":"10.1007\/s00520-014-2416-8","article-title":"Framework for timing of the discussion about forgoing cancer-specific treatment based on a qualitative study with oncologists","volume":"23","author":"Laryionava","year":"2015","journal-title":"Support Care Cancer"},{"key":"ref_33","doi-asserted-by":"crossref","first-page":"56","DOI":"10.1634\/theoncologist.2014-0031","article-title":"What keeps oncologists from addressing palliative care early on with incurable cancer patients? An active stance seems key","volume":"20","author":"Pfeil","year":"2015","journal-title":"Oncologist"},{"key":"ref_34","first-page":"3","article-title":"Integration of palliative care into the neuro-oncology practice: Patterns in the United States","volume":"1","author":"Walbert","year":"2014","journal-title":"Neurooncol. Pract."},{"key":"ref_35","doi-asserted-by":"crossref","first-page":"303","DOI":"10.1007\/s11060-014-1548-5","article-title":"End of life care in high-grade glioma patients in three European countries: A comparative study","volume":"120","author":"Koekkoek","year":"2014","journal-title":"J. Neurooncol."},{"key":"ref_36","doi-asserted-by":"crossref","first-page":"403","DOI":"10.1007\/s11060-013-1069-7","article-title":"The caregivers\u2019 perspective on the end-of-life phase of glioblastoma patients","volume":"112","author":"Flechl","year":"2013","journal-title":"J. Neurooncol."},{"key":"ref_37","doi-asserted-by":"crossref","first-page":"198","DOI":"10.1634\/theoncologist.2012-0247","article-title":"The end-of-life phase of high-grade glioma patients: Dying with dignity?","volume":"18","author":"Sizoo","year":"2013","journal-title":"Oncologist"},{"key":"ref_38","doi-asserted-by":"crossref","first-page":"263","DOI":"10.1093\/ageing\/afr148","article-title":"A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia","volume":"41","author":"Robinson","year":"2012","journal-title":"Age Ageing"},{"key":"ref_39","doi-asserted-by":"crossref","first-page":"537","DOI":"10.1212\/WNL.0000000000000671","article-title":"Mental incapacity in patients undergoing neuro-oncologic treatment: A cross-sectional study","volume":"83","author":"Kerrigan","year":"2014","journal-title":"Neurology"},{"key":"ref_40","doi-asserted-by":"crossref","first-page":"545","DOI":"10.1191\/0269216305pm1068oa","article-title":"Palliative care of patients with a primary malignant brain tumour: Case review of service use and support provided","volume":"19","author":"Faithfull","year":"2005","journal-title":"Palliat. Med."},{"key":"ref_41","doi-asserted-by":"crossref","first-page":"847","DOI":"10.1007\/s00520-013-2088-9","article-title":"The end-of-life phase of high-grade glioma patients: A systematic review","volume":"22","author":"Sizoo","year":"2014","journal-title":"Support Care Cancer"},{"key":"ref_42","doi-asserted-by":"crossref","first-page":"91","DOI":"10.1016\/S0885-3924(02)00440-2","article-title":"Palliative Care: The World Health Organization\u2019s global perspective","volume":"24","author":"Sepulveda","year":"2002","journal-title":"J. Pain Symptom Manag."},{"key":"ref_43","doi-asserted-by":"crossref","first-page":"37","DOI":"10.2217\/cns.13.65","article-title":"Symptom management and quality of life in glioma patients","volume":"3","author":"Boele","year":"2014","journal-title":"CNS Oncol."},{"key":"ref_44","doi-asserted-by":"crossref","first-page":"251","DOI":"10.1016\/j.pec.2008.01.020","article-title":"Unmet supportive care needs and interest in services among patients with a brain tumour and their carers","volume":"71","author":"Janda","year":"2008","journal-title":"Patient Educ. Couns."},{"key":"ref_45","doi-asserted-by":"crossref","first-page":"39","DOI":"10.1007\/s11060-008-9670-x","article-title":"End of life issues in brain tumor patients","volume":"91","author":"Pace","year":"2009","journal-title":"J. Neurooncol."},{"key":"ref_46","doi-asserted-by":"crossref","first-page":"217","DOI":"10.1007\/s11060-014-1393-6","article-title":"End-of-life symptoms and care in patients with primary malignant brain tumors: A systematic literature review","volume":"117","author":"Walbert","year":"2014","journal-title":"J. Neurooncol."},{"key":"ref_47","doi-asserted-by":"crossref","first-page":"1162","DOI":"10.1093\/neuonc\/nop045","article-title":"Symptoms and problems in the end-of-life phase of high-grade glioma patients","volume":"12","author":"Sizoo","year":"2010","journal-title":"Neuro-oncology"},{"key":"ref_48","doi-asserted-by":"crossref","first-page":"589","DOI":"10.1007\/s11060-014-1591-2","article-title":"Symptoms and medication management in the end of life phase of high-grade glioma patients","volume":"120","author":"Koekkoek","year":"2014","journal-title":"J. Neurooncol."},{"key":"ref_49","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1136\/bmjspcare-2013-000456","article-title":"Seizures in patients with high-grade glioma: A serious challenge in the end-of-life phase","volume":"4","author":"Sizoo","year":"2014","journal-title":"BMJ Support Palliat. Care"},{"key":"ref_50","doi-asserted-by":"crossref","unstructured":"Koekkoek, J.A.F., Dirven, L., Reijneveld, J.C., Postma, T.J., Grant, R., Pace, A., Oberndorfer, S., Heimans, J.J., and Taphoorn, M.J.B. (2014). Epilepsy in the end of life phase of brain tumor patients: A systematic review. Neuro-Oncol. Pract., 1\u20137.","DOI":"10.1093\/nop\/npu018"},{"key":"ref_51","doi-asserted-by":"crossref","first-page":"911","DOI":"10.1016\/j.addr.2012.01.017","article-title":"Current oral and non-oral routes of antiepileptic drug delivery","volume":"64","author":"Anderson","year":"2012","journal-title":"Adv. Drug Delivery Rev."},{"key":"ref_52","doi-asserted-by":"crossref","first-page":"1633","DOI":"10.1007\/s00520-015-2930-3","article-title":"Antiepileptic drug treatment in the end-of-life phase of glioma patients: A feasibility study","volume":"24","author":"Koekkoek","year":"2016","journal-title":"Support Care Cancer"},{"key":"ref_53","doi-asserted-by":"crossref","first-page":"593","DOI":"10.1097\/01.cco.0000142076.52721.b3","article-title":"The management of brain edema in brain tumors","volume":"16","author":"Kaal","year":"2004","journal-title":"Curr. Opin. Oncol."},{"key":"ref_54","doi-asserted-by":"crossref","unstructured":"Zwinkels, H., Dirven, L., Vissers, T., Habets, E.J.J., Vos, M.J., Reijneveld, J.C., van den Bent, M.J., and Taphoorn, M.J.B. (2015). Prevalence of changes in personality and behavior in adult glioma patients: A systematic review. Neuro-Oncol. Pract.","DOI":"10.1093\/nop\/npv040"},{"key":"ref_55","doi-asserted-by":"crossref","first-page":"555","DOI":"10.1136\/jnnp.2004.035931","article-title":"Views of bereaved relatives about quality of survival after radiotherapy for malignant cerebral glioma","volume":"76","author":"Davies","year":"2005","journal-title":"J. Neurol. Neurosurg. Psychiatry"},{"key":"ref_56","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1300\/J077v14n03_01","article-title":"Brain tumor as a threat to life and personality: the spouse perspective","volume":"14","author":"Salander","year":"1996","journal-title":"J. Psychosoc. Oncol."},{"key":"ref_57","doi-asserted-by":"crossref","first-page":"43","DOI":"10.1300\/J077v14n02_03","article-title":"In sickness and in health: A group intervention for spouses caring for patients with brain tumours","volume":"14","author":"Horowitz","year":"1996","journal-title":"J. Psychosoc. Oncol."},{"key":"ref_58","doi-asserted-by":"crossref","first-page":"26","DOI":"10.1016\/j.ejon.2006.02.007","article-title":"Palliative sedation at end of life\u2014A systematic literature review","volume":"11","author":"Engstrom","year":"2007","journal-title":"Eur. J. Oncol. Nurs."},{"key":"ref_59","doi-asserted-by":"crossref","first-page":"1957","DOI":"10.1056\/NEJMsa071143","article-title":"End-of-life practices in the Netherlands under the Euthanasia Act","volume":"356","author":"Rurup","year":"2007","journal-title":"N. Engl. J. Med."}],"container-title":["Cancers"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2072-6694\/8\/11\/102\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,11]],"date-time":"2025-10-11T19:34:59Z","timestamp":1760211299000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2072-6694\/8\/11\/102"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2016,11,8]]},"references-count":59,"journal-issue":{"issue":"11","published-online":{"date-parts":[[2016,11]]}},"alternative-id":["cancers8110102"],"URL":"https:\/\/doi.org\/10.3390\/cancers8110102","relation":{},"ISSN":["2072-6694"],"issn-type":[{"value":"2072-6694","type":"electronic"}],"subject":[],"published":{"date-parts":[[2016,11,8]]}}}