title: Diagnosis and decision making for patients with disorders of consciousness: a survey among family members.
abstract: OBJECTIVE
  To examine the perceptions of family members of patients with disorders of consciousness (DOC) in regard to the patients' level of consciousness, communicative status, and prognosis as compared with the objective medical categories, and to elicit the family members' self-reported practice of treatment decision-making.
  
  
  METHODS
  Cross-sectional semiquantitative survey.
  
  
  METHODS
  Five specialized neurologic rehabilitation facilities.
  
  
  METHODS
  Consecutive sample of primary family members (N=44) of patients with DOC as determined by the Coma Recovery Scale-Revised, surveyed 6 months after the patient's brain injury.
  
  
  METHODS
  Not applicable.
  
  
  METHODS
  Perception of level of consciousness as compared with the medical diagnosis; assessment of communicative status and prognosis; and practice of treatment decision-making.
  
  
  RESULTS
  The study included 44 family members of patients, most of whom had sustained global cerebral ischemia. Six months after brain injury, 36% were in a vegetative state (VS), 20% were in a minimally conscious state (MCS), and 39% had emerged from an MCS. In 76% of cases, the relatives assumed the same level of consciousness that diagnostic tests showed. In the other cases, consciousness was mostly underestimated. While relatives of patients in a VS, and to a lesser extent of those in an MCS, were more skeptical about the patients' chances to advance to an independent life, all had high hopes that the patients would regain the ability to communicate. Yet, 59% of family members had thought about limiting life-sustaining treatment. Most of them base treatment decisions on the patient's well-being; very few relied on previously expressed patient wishes.
  
  
  CONCLUSIONS
  According to our sample, family members of patients with DOC largely assess the level of consciousness correctly and express high hopes to reestablish communication with the patient.
authors.affiliation: Institute for Ethics, History and Theory of Medicine, University of Munich, Munich, Germany. Electronic address: ralf.jox@med.uni-muenchen.de.
authors.forename: Ralf J
authors.initials: RJ
authors.lastname: Jox
authors.affiliation: Institute for Ethics, History and Theory of Medicine, University of Munich, Munich, Germany.
authors.forename: Katja
authors.initials: K
authors.lastname: Kuehlmeyer
authors.affiliation: Department of Orthopaedics, Physical Medicine and Rehabilitation, Munich University Hospital, Munich, Germany.
authors.forename: Anke-Maria
authors.initials: AM
authors.lastname: Klein
authors.affiliation: Schön Klinik München Schwabing, Neurological Rehabilitation, Munich, Germany.
authors.forename: Jürgen
authors.initials: J
authors.lastname: Herzog
authors.affiliation: Neurological Hospital Bad Neustadt a.d. Saale, Bad Neustadt an der Saale, Germany.
authors.forename: Matthias
authors.initials: M
authors.lastname: Schaupp
authors.affiliation: Neurological Hospital Kipfenberg, Kipfenberg, Germany.
authors.forename: Dennis A
authors.initials: DA
authors.lastname: Nowak
authors.affiliation: Schön Klinik Bad Aibling, Neurological Rehabilitation, Bad Aibling, Germany.
authors.forename: Eberhard
authors.initials: E
authors.lastname: Koenig
authors.affiliation: Schön Klinik Bad Aibling, Neurological Rehabilitation, Bad Aibling, Germany.
authors.forename: Friedemann
authors.initials: F
authors.lastname: Müller
authors.affiliation: Department of Neurology, Munich University Hospital, Munich, Germany; Therapiezentrum Burgau, Burgau, Germany.
authors.forename: Andreas
authors.initials: A
authors.lastname: Bender
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003243:Consciousness; D003244:Consciousness Disorders / Q000175:diagnosis*; D003430:Cross-Sectional Studies; D003625:Data Collection; D003657:Decision Making; D005066:Euthanasia, Passive; D005260:Female; D006801:Humans; D008020:Life Support Care; D008297:Male; D008875:Middle Aged; D009679:Nuclear Family / Q000523:psychology*; D062072:Patient Acuity; D010465:Perception; D018458:Persistent Vegetative State / Q000175:diagnosis; D011379:Prognosis; D055815:Young Adult
keywords: Decision making; Diagnosis; Ethics; Family members; Persistent vegetative state; Rehabilitation