title: Decision-making in the end-of-life phase of high-grade glioma patients.
abstract: BACKGROUND
  During the disease course of high-grade glioma (HGG) patients, the goal of therapy eventually shifts from primarily life-prolongation to primarily sustaining the quality of life as good as possible. End-of-life care is aimed at prolongation of life with good quality, but inevitably also may require medical decisions for prevention and relief of suffering with a potential life shortening effect. Few data are available on this end-of-life decision (ELD) making process in HGG patients, with decreased consciousness, confusion or cognitive deficits preventing them to participate. In this study the ELD-making process in HGG patients is described.
  
  
  METHODS
  Physicians and relatives of a cohort of 155 deceased HGG patients were identified to fill in a questionnaire regarding the end-of-life conditions (patients' ELD preferences, patients' competence) and ELD-making (forgoing treatment and the administration of drugs with a potential life-shortening effect) for their patient or relative. Data were analysed with descriptive statistics.
  
  
  RESULTS
  Of 101 patients, physicians completed surveys including questions about ELDs (62% response rate). More than half of the patients relatively early became incompetent to make decisions due to delirium, cognitive deficits and/or decreasing consciousness. In 40% of patients the physician did not discuss ELD preferences with his/her patient. At least one ELD was made in 72% of patients, most often this comprised the withdrawal of dexamethasone. Palliative sedation was performed in 30% of patients and physician assisted death in 7%.
  
  
  CONCLUSIONS
  ELDs are common practises amongst HGG patients, although their preferences towards ELDs are frequently unknown to the physician. Because the majority of patients become incompetent towards death, participation in ELD-making is only possible with advanced care planning. Hence, timely discussion of ELD preferences is encouraged.
authors.affiliation: Department of Neurology, VU University Medical Centre, Amsterdam, The Netherlands. e.sizoo@vumc.nl
authors.forename: Eefje M
authors.initials: EM
authors.lastname: Sizoo
authors.forename: H Roeline W
authors.initials: HR
authors.lastname: Pasman
authors.forename: Janine
authors.initials: J
authors.lastname: Buttolo
authors.forename: Jan J
authors.initials: JJ
authors.lastname: Heimans
authors.forename: Martin
authors.initials: M
authors.lastname: Klein
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
authors.forename: Jaap C
authors.initials: JC
authors.lastname: Reijneveld
authors.forename: Martin J B
authors.initials: MJ
authors.lastname: Taphoorn
mesh_terms: D000368:Aged; D001932:Brain Neoplasms / Q000523:psychology / Q000628:therapy*; D015331:Cohort Studies; D003142:Communication; D003657:Decision Making; D005190:Family / Q000523:psychology; D005260:Female; D005910:Glioma / Q000523:psychology / Q000628:therapy*; D019538:Health Care Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D010817:Physician-Patient Relations; D010818:Practice Patterns, Physicians' / Q000706:statistics & numerical data; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology