Caregiver reactions to neuroimaging evidence of covert consciousness in patients with severe brain injury: a qualitative interview study

Abstract

Background Severe brain injury is a leading cause of death and disability. Diagnosis and prognostication are difficult, and errors occur often. Novel neuroimaging methods can improve diagnostic and prognostic accuracy, especially in patients with prolonged disorders of consciousness (PDoC). Yet it is currently unknown how family caregivers understand this information, raising ethical concerns that disclosure of neuroimaging results could result in therapeutic misconception or false hope. Methods To examine these ethical concerns, we conducted semi-structured interviews with caregivers of patients with PDoC who were enrolled in a concurrent neuroimaging research program designed to detect covert consciousness following severe brain injury. Caregivers held surrogate decision-making status for a patient. Interviews were conducted at two time points for each caregiver. The first interview occurred before the disclosure of neuroimaging results. The second occurred after disclosure. Descriptive analysis was applied to the data of four interview topics: (1) expectations for neuroimaging; (2) reactions to evidence of preserved cognition; (3) reactions to null results; and (4) understanding of the results and study. Results Twelve caregivers participated in the study; two caregivers shared surrogate decision-making status for one patient with PDoC. Twenty-one interviews were completed; one caregiver declined to participate in the post-disclosure interview. Three patients with PDoC associated with the study displayed evidence of covert consciousness. Overall, caregivers understood the neuroimaging research and results. Caregivers who received results of covert consciousness were generally pleased. However, there was some variation in expectations and reactions to these data and null results. Conclusion This study, for the first time, reveals caregiver expectations for and reactions to neuroimaging evidence of covert consciousness in patients with PDoC. Caregivers understood the neuroimaging research and results, casting doubt on speculative ethical concerns regarding therapeutic misconception and false hope. However, disclosure of neuroimaging result could be improved. Pre-disclosure consultations might assist professionals in shaping caregiver expectations. Standardization of disclosure might also improve comprehension of the results.

Ethical Considerations in Clinical Trials for Disorders of Consciousness

“…During a clinical trial involving participants with DoC, it is possible that results will be obtained that shed light on the participant's level of consciousness and/or capacity for recovery in clinical contexts of diagnostic and prognostic uncertainty. In such circumstances, important questions arise surrounding whether, how and to whom such investigational results ought to be disclosed, and how to characterize the value of such information [70,146,[154][155][156][157]. Determination of whether, when and how to disclose research results demands case-by-case consideration, given the plurality of factors that might bear on these decisions and their potential impact on participants, surrogates and research data integrity.…”

“…In other circumstances, investigational results might challenge the likelihood of conscious awareness or recovery thereof in clinical contexts of diagnostic and prognostic uncertainty. In such circumstances, important questions arise surrounding whether, how, and to whom such investigational results ought to be disclosed, and how to characterize the value of such information [ 70 , 146 , 154 , 155 , 156 , 157 ].…”

“…To manage these concerns and mitigate risks, investigators should work closely with ethicists to develop a standardized approach to sensitively handle investigational results pertaining to the presence or absence of consciousness. Qualitative research findings by Peterson and colleagues have challenged concerns surrounding therapeutic misconception and false hope, suggesting that caregivers generally understood results of advanced neuroimaging pertaining to consciousness and that “pre-disclosure consultations” and standardized methods of disclosure could improve reception and understanding of complex results [ 156 ]. To align expectations, surrogate decision-makers should be proactively counseled about the nature of the information that might accrue through study participation and their attitudes toward receiving or not receiving such information gauged.…”

Ethics and the 2018 Practice Guideline on Disorders of Consciousness

“…Ethicists have called for a comprehensive ethics evaluation of this space as early as 2007 35 and more recently in response to the 2018 guideline. 27,36,37,38,39,40,41,42 But broader consensus among experts is needed, incorporating the views of multiple stakeholders, such as families and patient advocates.…”

Informal Caregivers of Patients with Disorders of Consciousness: a Qualitative Study of Communication Experiences and Information Needs with Physicians

“…It has been shown that a large proportion have a high need for information and communication, while expressing high emotional burden [ 8 ]. Specifically, information about prognosis, therapy effects and alternatives to treatment continuation seem to be essential [ 26 , 27 ].…”