Article

OBJECTIVES: 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. DESIGN: Cross-sectional semiquantitative survey.
SETTING: Five specialized neurologic rehabilitation facilities. PARTICIPANTS:
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. INTERVENTION: Not applicable. MAIN OUTCOME MEASURES:
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.
CI - Copyright (c) 2015 American Congress of Rehabilitation Medicine. Published by
Elsevier Inc. All rights reserved.

Langue : ANGLAIS