Is Informed Consent a “Yes or No” Response? Enhancing the Shared Decision-Making Process for Persons with Aphasia

Abstract

Respect for patient autonomy and the need to have a comprehensive discussion of the risks and benefits of a medical intervention are two important issues involved in the process of obtaining informed consent. In dealing with individuals with aphasia, there may be particular challenges in balancing these two ethical imperatives. Although decision-making capacity may be preserved with aphasia, the patients' ability to fully participate in a dialogue regarding a proposed medical intervention is frequently impaired. We propose a process of enhancing informed consent for persons with aphasia while continuing to respect and enhance patient autonomy and the exercise of decision making for these patients. The use of a patient-selected "helper" during the informed consent process can improve the quality of the informed consent, while reserving final decision-making authority for the patient.

Social participation of relatives post-stroke: the role of rehabilitation and related ethical issues

“…Thus 17 articles met the inclusion criteria and were retained. One was a randomised clinical trial [14], seven were descriptive studies [7,8,10,12,13,16,17], three were issue papers [9,18,19], one was a clinical commentary [20], three were literature reviews [2,21,22] and two were clinical guidelines [15,23]. Approximately 41% (n ¼ 7) addressed ethical issues, 59% (n ¼ 10) the role of rehabilitation and 29% (n ¼ 5) relatives' social participation.…”

“…In-house instrument (3-level ordinal scale) [10] Level of care provided by partners including 10 daily activities: grooming, eating/drinking, mobility inside/ outside the home, preparing meals, house work, leisure, adjustment to emotional problems, arranging home modifications/technical aids/care and managing finances/insurance/house Sense of Competence Questionnaire [10] Burden including: 27 items in three categories (satisfaction with own performance, satisfaction with patient and consequences of involvement in care) Social participation of relatives post-stroke Two of these articles [18,19] were published in a special issue of the journal Topics in Stroke Rehabilitation in 2006 on ethical issues after stroke. They were selected for their relevance to ethical issues that a stroke may raise for relatives of persons with stroke.…”

Decision-making, cognition, and aphasia: developing a foundation for future discussions and inquiry

“…As such, there is a growing body of literature advocating for capacity assessment teams to support the communication process. Communication can be supported through a variety of means, including: using simplified language; speaking at a slower rate; pausing more frequently; using hearing aids; writing key words; repeating important points; using both open-and close-ended questions; ensuring direct face-to-face conversation; and involving communication specialists such as SLPs (Brady & Kirschner, 1995;Carling-Rowland & Wahl, 2010;Ferguson, Duffield, & Worrall, 2010;Giampieri, 2012;Kagan, 1998;Pachet et al, 2012;Stein & Brady Wagner, 2006). Indeed, SLPs have emphasised their specialised training and their role as "interpreters" for people with aphasia during capacity assessments when asked about their current and/or potential role in the capacity assessment process (ACSLPA, 2012;Ferguson et al, 2010;Suleman & Hopper, 2013).…”

Assessing Cognition Post-Stroke using Virtual Reality Technology

“…Eliciting a yes/no response from a person with aphasia is a suggested technique to overcome verbal barriers and facilitate communication (Stein & Brady Wagner, 2006), yet the variance was largely explained by auditory comprehension (65%) and naming (78%). These results may not be surprising given the HVLT requires participants to remember linguistic targets, thus impaired language will influence recognition performance.…”