title: The end-of-life phase of high-grade glioma patients: dying with dignity?
abstract: BACKGROUND
  In the end-of-life (EOL) phase, high-grade glioma (HGG) patients have a high symptom burden and often lose independence because of physical and cognitive dysfunction. This might affect the patient's personal dignity. We aimed to (a) assess the proportion of HGG patients dying with dignity as perceived by their relatives and (b) identify disease and care factors correlated with dying with dignity in HGG patients.
  
  
  METHODS
  We approached relatives of a cohort of 155 deceased HGG patients for the study. Participants completed a questionnaire concerning the EOL phase of the patient, covering several subthemes: (a) symptoms and signs, (b) health-related quality of life, (c) decision making, (d) place and quality of EOL care, and (e) dying with dignity.
  
  
  RESULTS
  Relatives of 81 patients participated and 75% indicated that the patient died with dignity. These patients had fewer communication deficits, experienced fewer transitions between health care settings in the EOL phase, and more frequently died at their preferred place of death. Relatives were more satisfied with the physician providing EOL care and reported that the physician adequately explained treatment options. Multivariate analysis identified satisfaction with the physician, the ability to communicate, and the absence of transitions between settings as most predictive of a dignified death.
  
  
  CONCLUSIONS
  Physicians caring for HGG patients in the EOL phase should timely focus on explaining possible treatment options, because patients experience communication deficits toward death. Physicians should strive to allow patients to die at their preferred place and avoid transitions during the last month of life.
authors: Department of Neurology, VU University Medical Centre, P.O. Box 7057, 1007 MB Amsterdam, The Netherlands. eol@vumc.nl
authors: Eefje M
authors: EM
authors: Sizoo
authors: Martin J B
authors: MJ
authors: Taphoorn
authors: Bernard
authors: B
authors: Uitdehaag
authors: Jan J
authors: JJ
authors: Heimans
authors: Luc
authors: L
authors: Deliens
authors: Jaap C
authors: JC
authors: Reijneveld
authors: H Roeline W
authors: HR
authors: Pasman
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001932:Brain Neoplasms / Q000523:psychology*; D003657:Decision Making; D005260:Female; D005910:Glioma / Q000523:psychology*; D017051:Hospice Care / Q000523:psychology / Q000592:standards; D006801:Humans; D008297:Male; D008875:Middle Aged; D012297:Right to Die; D011795:Surveys and Questionnaires; D016019:Survival Analysis; D013727:Terminal Care / Q000523:psychology*; D055815:Young Adult