Surrogate expectations in severe brain injury

Abstract

Objective: To understand what influences surrogate decision-makers’ expectation that a patient with a disorder of consciousness (DOC; those in a coma, the vegetative state or the minimally conscious state) will recover.

Subjects: Forty-one surrogates representing 37 DOC patients completed a survey about their experiences in having a family member with a DOC.

Methods: A quantitative questionnaire assessed surrogate and patient’s demographic, medical and psychosocial features that may explain surrogate’s expectation of patient recovery.

Results: Surrogates who were more relationally enmeshed with the patient thought the patient could communicate better and thought technology would improve treatment of patients with brain injury had greater expectations of recovery. Source of injury and patient’s current diagnosis did not explain expectations.

Conclusion: Relational factors between the patient and the surrogate may explain the surrogate’s expectation that the patient will recover more than factors that matter to clinicians such as the source of injury or the patient’s diagnosis.

• Caregivers
• disorders of consciousness
• severe brain injury
• surrogate decision-makers

Acknowledgements

The authors wish to acknowledge Jennifer E. Hersh, MBE, Palsteen Dass, BA, Alixandra Katz and Daniel Hegg, BA, for their help with data collection. The authors also wish to thank Nicholas Schiff, MD, Andrew Goldfine, MD and Jennifer E. Hersh, MBE for discussion of this work and feedback on an earlier draft.