Citation

Jox RJ, Kuehlmeyer K, Klein AM, Herzog J, Schaupp M, Nowak DA, Koenig E, Müller F, Bender A. Arch. Phys. Med. Rehabil. 2014; 96(2): 323-330.

Affiliation

Department of Neurology, Munich University Hospital, Munich, Germany; Therapiezentrum Burgau, Burgau, Germany.

Copyright

(Copyright © 2014, Elsevier Publishing)

DOI

10.1016/j.apmr.2014.09.030

PMID

25449192

Abstract

OBJECTIVE: To compare the perceptions of family members of patients with disorders of consciousness (DOC) on their patient's level of consciousness, communicative status and prognosis with the objective medical categories, and to elicit their self-reported practice of treatment decision making.

DESIGN: Cross-sectional semi-quantitative survey. SETTING: Five specialized neurologic rehabilitation facilities in Germany. PARTICIPANTS: Consecutive sample of primary family members (n=44) of patients with DOC as determined by the Coma Recovery Scale-Revised, surveyed six months after the patient's brain injury. INTERVENTION: not applicable MAIN OUTCOME MEASURES: Perception of level of consciousness as compared to medical diagnosis; assessment of communicative status and prognosis; practice of treatment decision making.

RESULTS: The study included 44 family members of patients, most of whom had suffered global cerebral ischemia. Six months after brain injury, 36% were in a vegetative state (VS), 20% in a minimally conscious state (MCS), and 39% had emerged from 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 with VS, and to a lesser extent of those with MCS, were more skeptical about the patient's chances to advance to an independent life, all had high hopes that the patients will 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 wellbeing; very few relied on previously expressed patient wishes.

CONCLUSION: According to our sample, family members of patients with DOC largely assess the level of consciousness correctly and express high hopes to re-establish communication with the patient.

Language: en