Diagnosis and decision making for patients with disorders of consciousness: a survey among family members

Abstract

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.

Keywords: Decision making; Diagnosis; Ethics; Family members; Persistent vegetative state; Rehabilitation.