Advance Care Planning in Glioblastoma Patients.
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 withAdvance 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.
Department of Neurology, Haaglanden Medical Center, P.O. BOX 432, 2501 CK The Hague, The Netherlands. FriLar@mchaaglanden.nl.
Lara
L
Fritz
Department of Neurology, Leiden University Medical Center, P.O. BOX 9600, 2300 RC Leiden, The Netherlands. l.dirven@lumc.nl.
Linda
L
Dirven
Department of Neurology, VU University Medical Center, P.O. BOX 7057, 1007 MB Amsterdam, The Netherlands. jc.reijneveld@vumc.nl.|Department of Neurology, Academic Medical Center, P.O. BOX 22660, 1100 DD Amsterdam, The Netherlands. jc.reijneveld@vumc.nl.
Jaap C
JC
Reijneveld
Department of Neurology, Haaglanden Medical Center, P.O. BOX 432, 2501 CK The Hague, The Netherlands. j.a.f.koekkoek@lumc.nl.|Department of Neurology, Leiden University Medical Center, P.O. BOX 9600, 2300 RC Leiden, The Netherlands. j.a.f.koekkoek@lumc.nl.
Johan A F
JA
Koekkoek
Department of Medical Decision Making/Quality of Care, Leiden University Medical Center, P.O. BOX 9600, 2300 RC Leiden, The Netherlands. a.m.stiggelbout@lumc.nl.
Anne M
AM
Stiggelbout
Department of Public and Occupational Health, VU University Medical Center, P.O. BOX 7057, 1007 MB Amsterdam, The Netherlands. hrw.pasman@vumc.nl.
H Roeline W
HR
Pasman
Department of Neurology, Haaglanden Medical Center, P.O. BOX 432, 2501 CK The Hague, The Netherlands. m.j.b.taphoorn@lumc.nl.|Department of Neurology, Leiden University Medical Center, P.O. BOX 9600, 2300 RC Leiden, The Netherlands. m.j.b.taphoorn@lumc.nl.
Martin J B
MJ
Taphoorn
advance care planning; decision-making; end-of-life; glioblastoma; palliative care