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

Harvard University, Cambridge, Massachusetts, United States
Topics in Stroke Rehabilitation (Impact Factor: 1.45). 02/2006; 13(4):42-6. DOI: 10.1310/tsr1304-42
Source: PubMed


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.

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    • "Brady and Kirschner (1995) used case studies of individuals with aphasia to illustrate complex issues related to self-determination, capacity assessment, and ensuring a balance between stakeholder interests (i.e., family, patient, health care providers). Currently, there is a small body of literature comprising primarily case studies and discussion papers in which researchers advocate for a thorough understanding of communication disorders and an interactive, supportive capacity assessment process that can reveal DMC despite language and communication deficits (Brady & Kirschner, 1995; Brady Wagner, 2003; Carling-Rowland & Wahl, 2010; Davis & Ross, 2003; Diener & Bischof-Rosario, 2004; Ferguson et al., 2003, 2010; Finestone & Blackmer, 2007; Mackenzie, Lincoln, & Newby, 2008; Pachet et al., 2012; Stein & Brady Wagner, 2006). Although SLPs may be asked to assist with assessments of DMC, little is known about the nature of their involvement in such assessments, nor about their perspectives on DMC assessments for persons with aphasia (PWA). "
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    ABSTRACT: Background: In health care settings, a person’s ability to make decisions may be questioned as a result of neurological disease or injury that can affect cognitive function. To determine whether a person is able to make a decision, health care professionals are required to carry out an assessment of decision-making capacity (DMC; also known as capacity assessments). For individuals with aphasia, these types of assessment may be problematic because they rely heavily on language abilities. There is a growing body of literature available on capacity assessments of individuals with aphasia, yet there are few studies on the perspectives of speech-language pathologists (SLPs) related to DMC assessments of individuals with aphasia, including barriers and facilitators to valid assessments.Aims: The purpose of this study was to explore perspectives of SLPs on assessments of DMC with individuals with aphasia. The following research questions were of interest: (1) What do SLPs know about capacity assessment? (2) What are the perspectives of SLPs regarding the current state of capacity assessment of individuals with aphasia? (3) What recommendations do SLPs have regarding the assessment of DMC of persons with aphasia (PWA)?Methods and Procedures: In the context of a qualitative research paradigm, researchers carried out semi-structured interviews with 15 SLPs in Alberta, Canada. An interpretive description design was used for data analysis and interpretation.Outcomes and Results: Participants discussed three major topics: (1) knowledge of capacity of assessments; (2) assessments of DMC and PWA; and (3) involvement of SLPs in capacity assessments. Participants had very general knowledge of capacity assessments. Participants reported that they thought that PWA were at a disadvantage during capacity assessments. Participants recognised that SLPs have professional skills that enable them to enhance assessment of DMC in PWA. The results of this study confirm and extend findings from other international research studies.Conclusions: SLPs should be involved in capacity assessments for PWA. Their knowledge in the areas of communication and cognition are important to facilitate fair, valid capacity assessments. The findings of this study may be used to inform recommendations for SLPs to assume different roles in the capacity assessment process.
    Full-text · Article · Aug 2015 · Aphasiology
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    • "In order to facilitate the implementation of elements of PCC in the acute setting for people with aphasia, enrichment of the Downloaded by [La Trobe University] at 15:35 03 April 2013 communicative interaction is required. This may be achieved through the involvement of a patient-selected " helper, " or the implementation of communication strategies which facilitate the participation of people with aphasia (Stein & Brady Wagner, 2006). Communication strategies which may facilitate this include accessible healthcare information (Parr, Pound, & Hewitt, 2006; Rose, Worrall, Hickson, & Hoffmann, 2010), supported conversation techniques (Kagan, 1998), decision aids (Hoffmann & Tooth, 2010; Trevena, Baratt, & McCaffery, 2008), and Talking Mats ® (Bornman & Murphy, 2006). "
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    ABSTRACT: Background: The role of speech pathologists working in the acute hospital setting has evolved away from service provision to people with aphasia and their families towards a stronger focus on dysphagia. Evidence-based practice (EBP) can be conceptualised as the integration of four streams of evidence: research-based clinical evidence, clinical expertise, patient preferences and values, and the practice context. EBP is an important tenet in current healthcare. However, it is not clear whether speech pathologists in the acute setting are using EBP to support their aphasia management. Not adopting evidence-based approaches to care has the potential to result in a negative impact on people with aphasia and their families, healthcare services, and speech pathologists, who experience a sense of dissonance related to their current service provision This paper explores acute aphasia management through an EBP lens in an attempt to better understand this dilemma. Aims: This paper applies the conceptual framework of EBP to acute aphasia management. An extensive, systematically conducted review of the international literature relating to health professionals was undertaken. The findings are presented as a narrative literature review. Main Contribution: This paper describes and evaluates how the different streams of research evidence, clinical expertise, patient preferences and values, and the practice context contribute to speech pathologists’ management of acute aphasia. Further, the paper identifies current gaps in the literature and suggests a research agenda for the field. Conclusions: Little is known about how speech pathologists integrate and implement the different streams of evidence in EBP, and how these contribute to acute aphasia practice. Speech pathologists report that clinical guidelines containing low-level evidence are the main source of research information. Other sources of knowledge include colleagues, professional development events, and websites. Additional challenges to the management of people with aphasia in the acute hospital setting may be posed by the physical environment, the culture of the acute hospital setting, and the provision of leadership to support evidence-based approaches to care. The challenge of using a person-centred approach to care for people with aphasia is acknowledged. Further research exploring speech pathologists’ perceptions of their role in acute aphasia management, the clinical decision-making process of speech pathologists in relation to acute aphasia management, and the experiences of people with aphasia and their families in the acute setting is required. This will allow for the design of patient-centred approaches to care, and enable the implementation of evidence-based acute aphasia management.
    Full-text · Article · Apr 2013 · Aphasiology
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    ABSTRACT: A current need exists for research to assist clinicians in the capacity evaluation process, especially in relation to assessment of clients with complex issues such as fluctuating capacity and communication barriers. The aim of this article is to promote knowledge and consideration of these issues through an examination of neuropsychological, ethical, and medical-legal factors associated with the assessment of capacity in an individual with both fluctuating capacity and communication impairments. The discussion includes a narrative case study of a complex individual case seen by the Regional Capacity Assessment Team (RCAT) for an assessment of decision-making capacity related to personal and financial matters. Relevant background information about this client, behavioral observations, neuropsychological test results, and the process and outcome of the RCAT targeted capacity interview are presented. Based on previous literature and the case study, a series of recommendations are provided to guide the clinician through the capacity evaluation process with individuals with complex issues. Common pitfalls, nuances, and dilemmas involved in capacity assessment are addressed.
    No preview · Article · Jan 2012 · Topics in Stroke Rehabilitation
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