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Assessing capacity and consent is often challenging in patients with aphasia, because they have impaired comprehension or an inability to articulate messages. We have recently encountered a further barrier to medical communication in patients with the nonfluent-agramatic variant of primary progressive aphasia (nfvPPA): binary reversals in which the patient, when required to choose between 2 opposing alternative responses, makes the wrong choice. This most often manifests as reversal of yes and no, but it may extend to other reversals (eg, up and down, his and her) in conversation, writing, or nonverbal gestures (eg, head nodding, head shaking, thumbs up, and thumbs down).1-3 Patients may subsequently correct the unintended response, but their true intentions are easily misinterpreted both in daily life and medical decision making. Supported decision making with patients with aphasia frequently depends on presenting information so that the individual can select a preferred option from binarized alternatives (usually, yes or no); this is a frequent feature of medical pro forma documentation (eg, the checklist of magnetic resonance imaging safety questions).4 Binary reversals render this process particularly problematic. While the problem can sometimes be circumvented by obtaining the information from a friend or family member, it is crucial in other situations to obtain the patient’s own views (for example, during consent to treatment or an assessment of mental capacity).
We have had 3 recent clinical encounters where binary reversals presented a barrier to effective communication and assessment of capacity. This case series did not require institutional review board approval but rather used the existing generic procedure for obtaining single-case consent that has been approved by the UCL Queen Square Institute of Neurology and National Hospital for Neurology and Neurosurgery Joint Research Ethics Committee. Two patients gave informed written consent for publication of potentially identifiable information.
In the first case, a man in his mid-70s with nfvPPA had agreed to take part in a clinical teaching lecture but, during the consent process, circled no in response to the question asking if he agreed to his case being used for teaching. He later indicated clearly that he had indeed wanted to take part.
In the second case, a man in his early 70s with nfvPPA expressed an interest in taking part in a clinical research study, but when asked if he would like to fix a time for the visit, he emphatically repeated, no! In the clinic, he later expressed disappointment at not having had the opportunity to participate in research. Subsequent communications about research visits were successfully conducted via email, which gave him an opportunity to monitor and correct any binary reversals.
In the third case, a patient with nfvPPA who was in his mid-70s was assessed clinically for decision-making capacity. The patient’s only speech output on assessment were the words yes and no, and these were deployed inconsistently. The use of communication support strategies combined with careful assessment of response consistency and nonverbal communication (eg, pointing to options from an array) demonstrated that this individual did not simply have binary reversals but was in fact unable to understand or weigh information or communicate decisions reliably.
These cases illustrate how binary reversals can confound the assessment of consent and mental capacity in both research and clinical settings. Because the phenomenon appears to be closely associated with nfvPPA and often develops early in the course of the illness, clinicians should be alert to its presence and take particular care interpreting the wishes of patients with this syndrome.
In milder form, however, binary reversals may occur in various other conditions (Table). This phenomenon signifies that barriers to communication in patients with aphasia may be subtle and not captured by standard screens of language function. Overcoming such barriers requires clinicians to be alert to the quality and consistency of patients’ conversational abilities and, wherever possible, to use flexible, personalized assessment strategies that allow wishes to be conveyed reliably while preserving patient autonomy.5 The curious case of binary reversals reminds clinicians that what patients with this condition say may be at odds with what they mean.
Corresponding Author: Harri Sivasathiaseelan, Dementia Research Centre, 8-11 Queen Square, London WC1N 3BG, United Kingdom (firstname.lastname@example.org).
Published Online: December 3, 2018. doi:10.1001/jamaneurol.2018.3790
Conflict of Interest Disclosures: None reported.
Funding/Support: This work was funded by the Leonard Wolfson Experimental Neurology Centre (Mr Sivasathiaseelan and Dr Marshall), the Alzheimer’s Society (Dr Warren), and the National Institutes for Health Research University College London Hospitals Biomedical Research Centre (Dr Warren).
Role of the Funder/Sponsor: The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Sivasathiaseelan H, Marshall CR, Hardy CJD, Fox NC, Warren JD, Rossor MN. Aphasic Binary Reversals in Patients With Neurological Disease as a Barrier to Clinical Decision Making. JAMA Neurol. Published online December 03, 2018. doi:10.1001/jamaneurol.2018.3790
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