International Journal of Speech-Language Pathology

ISSN: 1754-9507 (Print) 1754-9515 (Online) Journal homepage: http://www.tandfonline.com/loi/iasl20

Speech-language pathologists’ contribution to the assessment of decision-making capacity in aphasia: A survey of common practices Kerryn Aldous, Rhiannon Tolmie, Linda Worrall & Alison Ferguson To cite this article: Kerryn Aldous, Rhiannon Tolmie, Linda Worrall & Alison Ferguson (2014) Speech-language pathologists’ contribution to the assessment of decision-making capacity in aphasia: A survey of common practices, International Journal of Speech-Language Pathology, 16:3, 231-241 To link to this article: http://dx.doi.org/10.3109/17549507.2013.871751

Published online: 08 Jan 2014.

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Date: 07 November 2015, At: 17:33

International Journal of Speech-Language Pathology, 2014; 16(3): 231–241

Speech-language pathologists’ contribution to the assessment of decision-making capacity in aphasia: A survey of common practices

KERRYN ALDOUS1, RHIANNON TOLMIE1, LINDA WORRALL2,3 & ALISON FERGUSON1,2 University of Newcastle, Newcastle, Australia, 2Centre for Clinical Research Excellence (CCRE) in Aphasia Rehabilitation, Australia, and 3The University of Queensland, Brisbane, Australia

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1The

Abstract Speech-language pathologists’ scope of practice is currently unclear in relation to their contribution to the multi-disciplinary assessment of decision-making capacity for clients with aphasia and related neurogenic communication disorders. The primary aim of the current research study was to investigate the common practices of speech-language pathologists involved in assessments of decision-making capacity. The study was completed through the use of an online survey. There were 51 of 59 respondents who indicated involvement in evaluations of decision-making. Involvement in this kind of assessment was most commonly reported by speech-language pathologists working in inpatient acute and rehabilitation settings. Respondents reported using a variety of formal and informal assessment methods in their contributions to capacity assessment. Discussion with multidisciplinary team members was reported to have the greatest influence on their recommendations. Speech-language pathologists reported that they were dissatisfied with current protocols for capacity assessments in their workplace and indicated they would benefit from further education and training in this area. The findings of this study are discussed in light of their implications for speech-language pathology practice.

Keywords: Aphasia, decision-making, speech-language pathology, professional practice, multidisciplinary team, legal issues.

Introduction This research aimed to explore the common practices of speech-language pathologists involved in the assessment of decision-making capacity for clients with aphasia and related neurogenic communication disorders. While the legal processes relevant to the assessment of decision-making capacity are specific for local states and countries, this paper focuses on issues that are considered to apply more generally in Western countries. (For further information about suitable resources internationally, see Ferguson, Duffield, & Worrall, 2010; Nicholson, Cutter, & Hotopf, 2008; Verma & Silberfield, 1997).

Decision-making capacity Autonomy in making decisions regarding one’s life, regardless of outcome, is a right of all individuals, providing that they are appropriately informed, free from coercion, and have the capacity to make the decision at hand (Wong, Clare, Gunn, & Holland, 1999). It is presumed that individuals have the cognitive capacity to make a decision unless proven

otherwise (for further discussion of this principle, see Appelbaum, 2007; Darzins, 2010; Kerridge, Lowe, & Stewart, 2009; Law Society of New South Wales, 2003). The terms “competence” and “capacity” for decision-making are sometimes distinguished in that “competence” is seen as determined through the legal process, while “capacity” is seen as a clinical determination (Appelbaum, 2007). However, it is generally assumed that, to be capable of autonomous decision-making, an individual must demonstrate an understanding of information relevant to the decision, be able to retain and integrate this information into the decision-making process, and communicate their decision in an easily understood manner (Bellhouse, Holland, Clare, & Gunn, 2001). If an individual’s decision-making capacity is questioned, it is possible for an ethical dilemma to arise between respect for the individual’s autonomy and the need for their care and protection from harm (Brady Wagner, 2003; Larkin, Marco, & Abbott, 2001; Lof & Watson, 2008; Wong et al., 1999). Decision-making capacity fluctuates over time, dependent on the individual as well as the varying characteristics and complexity of the decision

Correspondence: Professor Alison Ferguson, Speech Pathology Discipline, Faculty of Education & Arts, University of Newcastle, NSW 2308, Australia. Tel: ⫹ 61(2)4921 5716. Fax: ⫹ 61(2)4921 6933. Email: [email protected] ISSN 1754-9507 print/ISSN 1754-9515 online © 2014 The Speech Pathology Association of Australia Limited Published by Informa UK, Ltd. DOI: 10.3109/17549507.2013.871751

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(Bellhouse et al., 2001). The ability of an individual to be involved in the autonomous decisionmaking process may be permanently or temporarily impaired as a result of sudden brain injury, mental illness, intellectual disability, or degenerative disease (Law Society of New South Wales, 2003). In such cases, capacity evaluation may be necessary to determine the extent to which an individual’s difficulties are affecting their ability to independently make well-informed and reasoned decisions. Professionals who have expertise in the evaluation of the mental processes which are fundamental to decision-making capacity will often complete such assessments (Reid-Proctor, Galin, & Cummings, 2001). Decision-making capacity and speech-language pathology Aphasic impairment in the ability to produce and understand spoken and written language following sudden brain injury or the progression of neurological disease has the potential to affect the determination of decision-making capacity. The clinical process for determination of decision-making capacity for medical treatment, for example, involves four criteria which are typically assessed through the person’s response to relevant questions: Communicate a choice (e.g., Have you decided …? Can you tell me your decision?); understand the relevant information (e.g., Tell me the problem … Tell me about the treatment); appreciate the situation and consequences (e.g., Why do you think your doctor has recommended this treatment?); and reason about treatment options (e.g., What makes that option better?) (Appelbaum, 2007, p. 1836). Although non-verbal responses are acceptable, communicative scaffolds and supported communication strategies would be required to accommodate for the presence of aphasia given the effect of aphasia on the ability to comprehend verbal and written information as well as the ability to communicate preferences or decisions in a manner which can be understood by others (Benson & Ardila, 1996). A thorough assessment of both receptive and expressive language skills, including reading and writing competence, is therefore warranted for individuals with aphasia whose decision-making capacity is questioned. Additionally, speech-language pathologists contribute to the assessment of cognitive impairment and function, and so naturally such assessment data is important for assessment of decision-making capacity. However, the current research sought to focus primarily on the impact of the presence of aphasia in the context of relatively preserved cognition on the assessment of decision-making capacity. The speech-language pathologist’s role in an evaluation of decision-making capacity is to contribute to the assessment of the communication and

cognitive skills which are relevant to the decision at hand (Braunack-Mayer & Hersh, 2001; Ferguson, Worrall, McPhee, Buskell, Armstrong, & Togher, 2003). It is not the responsibility of the speechlanguage pathologist to decide whether an individual possesses decision-making capacity (Udell, Sullivan, & Schlanger, 1980). Depending on the nature, complexity, and potential implications of the decision to be made, this responsibility may lie with a medical professional authorised by law to make this determination or alternatively be assigned to the courts (Bellhouse et al., 2001). Changes to the understanding of the relationship between cognitive function and verbal communication have resulted in capacity assessments becoming more complex, therefore requiring contributions from various medical and allied health professionals. Thus, there has been a movement away from traditional legal preferences for medical professionals to solely carry out all assessments of decision-making capacity. Following this, there has been a change in legal standards regarding professionals who are able to provide opinions on decision-making capacity (Collier, Coyne, & Sullivan, 2005). This change has been reflected in national and international Scope of Practice documents which describe the breadth of professional practice carried out by speech-language pathologists (ASHA, 2007; Speech Pathology Australia, 2003). Such documents have also acknowledged that clinicians may be involved in advocating on the behalf of their clients and potentially serve as an expert witness in court hearings. Speech-language pathologists may also be required to defend the assessment method chosen to examine their client’s skills (Huer & Yaniv, 2006). It is, therefore, important that the speech-language pathologist is familiar with current assessment procedures in the field, and the scope of their contribution to the assessment of decision-making capacity (Reid-Proctor et al., 2001). The acquisition of this knowledge, however, is complicated by the lack of empirically-derived guidelines for people with aphasia outlining the specific aspects of communication that clinicians should assess, and the assessment methods considered appropriate by other speech-language pathologists for this kind of assessment. For these reasons, the present study sought to describe the current practices of speech-language pathologists through the use of a nationally distributed survey. There is some debate regarding the extent to which assessments need to be individualized and how the skills underlying decision-making capacity should be assessed (Appelbaum, 2007; Grisso & Appelbaum, 1998a; Grisso, Borum, Edens, Moye, & Otto, 2003). Specific attention has been given to the development of such guidelines for evaluating the capacity of individuals with intellectual disability (e.g., Connelly, Rosser, White, & Wilson, 1992) and dementia (e.g., Darzins, Molloy, & Strang, 2000). Some general guidelines have also been developed

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for assessing the capacity of individuals with psychiatric illness (e.g., Spar & Garb, 1992). The issues related to the establishment of decision-making capacity, particularly the complexities associated with distinguishing the cognitive abilities of people with communication impairments, have been acknowledged by several researchers (Helm-Estabrooks, 2002; Keil & Kaszniak, 2002; Purdy, 2002). For the assessment of the cognitive skills relevant to decision-making capacity, available guidelines recommend formal assessment tools such as the Mini-Mental State Examination (MMSE) (Folstein, Folstein, & McHugh, 1975). The developers of this assessment suggested that the test can reveal the partial cognitive deficits of an individual with aphasia. However, the validity of this claim is disputable, as none of the participants involved in the development of the MMSE were reported to have aphasia. Assessments of cognitive skills are typically highly loaded for both oral and written language ability. Thus, poor performance of an individual with considerable communication impairment may be in fact reflective of their language difficulties, rather than deficits in their general cognitive abilities (Enderby, 1994; Likourezos & Lantz, 2001). In their review of 23 assessment protocols for decision-making capacity in relation to consent (to clinical research and treatment), Dunn, Nowrangi, Palmer, Jeste, and Saks (2006) identified that the MacArthur Competence Assessment Tools (MacCAT) for Clinical Research (Appelbaum & Grisso, 2001) and for Treatment (Grisso & Appelbaum, 1998b) provided the most comprehensive approach and had the strongest psychometric validation. The MacCAT involves a 15–30 minute semi-structured interview that assesses understanding, appreciation, reasoning, and expression of a choice, and research trials using the tool have been reported for people with depression, schizophrenia, dementia, cancer, HIV, diabetes, and controls (Wainwright & McGinnis, 2009). In a prospective study of 302 consecutive medical inpatients, Raymont, Bingley, Buchanan, David, Hayward, Wessley, et al. (2004) found a correlation between the MacCAT and MMSE, but found that the determination of incapacity through clinical interview differed from the determination using these tools. Neither Dunn et al. (2006) nor Raymont et al. (2004) specifically engage with the issue of the presence of aphasia in the administration of these assessments. Since existing assessment tools may be potentially misleading when utilized with people with communication difficulties, experts have questioned the validity of the use of such language-dependent assessments in the process of determining decisionmaking capacity (Ganzini, Volicer, Nelson, Fox, & Derse, 2004; Jain, Layton, & Murray, 2000). However, the absence of empirically-derived guidelines identifying more suitable assessment procedures for

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people with aphasia risks the use of potentially invalid tools being utilized to determine the capacity of individuals with considerable communication impairment. As previously outlined, before such guidelines can be developed, information is first needed about the current assessment tools being used by clinicians. The primary aim of the current research study was to investigate, by means of an online survey, the practices of speech-language pathologists involved in assessments of decision-making capacity for their clients with aphasia and related neurogenic communication disorders.

Method Participants The only criteria for inclusion in the research project were that participants would be speech-language pathologists who had experience working with an adult neurological caseload. There was no requirement for participants to be currently in practice or to be currently working with an adult caseload; however, because participants were recruited from online special interest groups in Australia, it is likely that they were currently practising. The online special interest groups were: Speech Pathology Email ChatS (SPECS), The Adult Neurogenic Communication Interest Group, Speech Pathologists in Adult Disability, Speech Pathology in Brain Injury Interest Group, and Adult Communication Disorders and Dysphagia. As participants were recruited nationally, the health service areas in which they practised varied, as did their methods of service delivery. A total of 59 speech-language pathologists completed the survey. Data collection by survey The majority of the items included in the survey were designed purposely to probe for the decisionmaking capacity assessment practices of speechlanguage pathologists. For comparative reasons, items were derived from surveys used in previous studies that had investigated the assessment of decision-making capacity by lawyers (Helmes, Lewis, & Allan, 2004) and neuropsychologists (Mullaly, Kinsella, Berberovic, Cohen, Dedda, Froud, et al., 2007) in Australia and modified for the speechlanguage pathology profession. The survey was initially piloted with seven speech-language pathologists (Bray, 2008). Items in the survey which were observed to provide difficulty for respondents were re-written and re-formatted. Results of the pilot informed the final survey design used in the present study. The survey was distributed through an online survey management site; SurveyMonkey. The survey consisted of 20 items that provided primarily for the collection of quantitative data

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covering four key areas: (1) Context and frequency of the speech-language pathologists’ involvement in the assessment of decision-making capacity; (2) Features of the assessment process; (3) Methods used by speech-language pathologists to interpret and report on findings; and (4) Satisfaction and confidence of speech-language pathologists with their current knowledge base and decision-making capacity assessment practices. To allow for alternative response choices, the survey utilized multiple choice, multiple answer, yes/no, closed questions, open questions, opinion scales, and free text responses (De Vaus, 1995). See Table I for further details of areas covered by the survey.

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Data analysis Data obtained from participants’ completion of the research survey were collated and downloaded from the survey host site SurveyMonkey and subsequently entered into Microsoft Excel (2007). Data were then entered into the Statistical Package for the Social Sciences (SPSS) software with Chisquare analysis used as the main statistical approach. However, when the data set was too large for calculation of the exact algorithm, a Monte Carlo algorithm was utilized to estimate the exact p-value to the desired level of accuracy (Bal, Er, & Sonmez, 2009). Responses to the short-answer free responses were reviewed when interpreting the quantitative data and statistical analyses (Unsworth, 2004) and are presented descriptively in the results where appropriate.

Results Of the 59 survey respondents, 51 (86.4%) reported that they had been involved in the assessment of decision-making capacity for a client with aphasia or a related neurogenic communication disorder. For the eight respondents who had not had experience, the only further data collected and reported were in relation to the number of years that they had been working as a speech-language pathologist with an adult caseload. For the majority of respondents who indicated involvement in evaluations of decisionmaking, such assessments took up less than 10% of their working time (44/50, 88%, one no response). For these respondents, the number of years’ experience in contributing to capacity assessments varied from less than 1 year to more than 20, with a mean of 7.3 years. The results are presented in the four primary areas covered by the survey used in this investigation: context and frequency of decision-making capacity assessments, features of the assessment process, methods for interpreting and reporting on assessment findings, and satisfaction with current knowledge and assessment practices.

Context and frequency of decision-making capacity assessments The frequency of involvement in decision-making capacity assessments reported by survey respondents for different client populations (survey questions 5 and 6) indicated a relatively more common involvement with those affected by stroke (50 respondents: 6% always, 28% often, 56% sometimes, 6% rarely, 4% never) and traumatic brain injury (48 respondents: 4.2% always, 22.9% often, 39.6% sometimes, 16.7% rarely, 16.7% never), and then less commonly with dementia (44 respondents: 2.3% always, 11.4% often, 27.3% sometimes, 38.6% rarely, 20.5% never). Respondents reported rarely being involved in the assessment of capacity for client populations of developmental disability (43 respondents: 0% always, 2.3% often, 2.3% sometimes, 23.3% rarely, 72.1% never), motor neurone disease (44 respondents: 0% always, 0% often, 18.2% sometimes, 29.5% rarely, 52.3% never), Parkinson’s disease (45 respondents: 0% always, 0% often, 26.7% sometimes, 26.7% rarely, 46.7% never), Multiple Sclerosis (43 respondents: 0% always, 0% often, 9.3% sometimes, 34.9% rarely, 55.8% never), mental health (42 respondents: 0% always, 4.8% often, 4.8% sometimes, 11.9% rarely, 78.6% never) or Huntington’s disease (41 respondents: 0% always, 0% often, 7.3% sometimes, 26.8% rarely, 65.9% never). Participants indicated being employed within a variety of service delivery settings and were able to select more than one area of work. Approximately one-third of work settings were reported to involve acute inpatient care (36 of 92 settings reported, 39%), one-half of work settings were reported to involve rehabilitation care (50 of 92 settings—54%; 25 inpatient, 25 outpatient), with fewer community or home-based care (six of 92 settings reported, 7%). None of the respondents in the outpatient rehabilitation or community/home-based care settings reported involvement in contributing to the assessment of decision-making capacity. All of the respondents in the inpatient acute care settings (36/36, 100%) were involved, contributing to the assessment of decision-making capacity. For the 25 inpatient rehabilitation settings, 15 of 23 (65%) contributed to such an assessments, with eight of 23 (35%) reporting no involvement in this process (two no response). This difference in proportions of work settings with reported experience of being involved in assessment of decision-making capacity was significant (χ2, p ⬍ .001). The majority (37/51, 72.2%) of the settings that indicated involvement in decision-making assessment reported contributing to such evaluations less than once per month. Thirteen of these settings (25%) contributed to capacity assessments between one and four times per month, with two settings (4%) reporting involvement in capacity evaluations

Influence of assessment methods on recommendations?

Frequency assessment of skills related to DMC?

Formal assessment tools used during evaluation of DMC? Other areas observed/informally assessed? Frequency recommendations if assessment results borderline? Frequency method of reporting assessment findings?

Level of agreement with satisfaction statements?

Other comments regarding DMC assessment? Years working with adult client population?

12

13

14 15 16 17

18

19 20

OQ CQ

MA, OS

Y/N MA MA, OS MA, OS

MA, OS

MA, OS

OS MA, OS

MA MC MC MA, OS

MA Y/N MC MC MA, OS

Question type 3 options, FT Y/N 7 options 5 options 9 options, FT N-R-S-O-A 6 options, FT 6 options 6 options 4 options, FT N-R-S-O-A N-R-S-O-A 11 options, FT N-R-S-O-A 11 options, FT N-S-M-S-VS 8 options, FT N-R-S-O-A Y/N, FT 11 options 7 options, FT 7 options, FT N-R-S-O-A 24 options, FT SD-D-N-A-SA FT FT

Response options

X

X X

X X X X X

Context

X

X X

X

X X

X

Features

X

X X

X

X

Interpretation and reporting

X

X

Satisfaction, confidence

DMC, Decision-making capacity; MC, Multiple choice; MA, Multiple answer; Y/N, Yes/No; OQ, Open question; CQ, Closed question; OS, Opinion scale; N-R-S-O-A, Never, Rarely, Sometimes, Often, Always; N-S-M-S-VS, None, Slight, Moderate, Significant, Very significant; SD-D-N-A-SA, Strongly disagree, Disagree, Neutral, Agree, Strongly agree; FT, Free text.

How often client made aware of DMC assessment? Frequency methods used in assessment of DMC?

Specific client populations (% of DMC Assessment)? Proportion of clinical time spent assessing DMC? Average time (hours) DMC assessment typically takes? Frequency of assessment of different decision types?

6 7 8 9

10 11

Work settings? Ever involved in assessment of DMC*? Number of years involved in DMC assessment? Number of DMC assessments per month? Client populations (frequency of DMC Assessment)?

Survey item (summarized)

1 2 3 4 5

Item

Table I. Categories of survey items.

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between five and six times per month. Respondents who reported working in acute inpatient settings reported a significantly greater frequency of involvement (χ2, p ⬍ .001). Confidence in assessment of capacity was explored through respondents’ ratings of level of agreement to statements within Survey Question 19. There were 33 respondents to the statement, “I feel confident being involved in administering assessments of decision-making capacity”, and only a minority agreed with this statement (strongly agree 0%, agree 18.2%, neutral 39.4%, disagree 42.4%, strongly disagree 0%). There were 35 respondents to the statement, “Once the assessment is completed I usually feel confident about my contribution to recommendations regarding capacity”. Their ratings provided an interesting contrast with the question about assessment administration, as half of the respondents indicated confidence in their contribution following completion of the assessment (strongly agree 0%, agree 51.4%, neutral 37.1%, disagree 11.4%, strongly disagree 0%). There was no significant effect of years of experience on ratings of confidence (χ2, p ⬍ .099). Features of the assessment process Participants responded to the following question (Survey Question 9): Please indicate the frequency with which you contribute to the assessment of a person’s capacity to make reasoned and informed decisions regarding the following. Participants were provided with a further note to indicate that “Lifestyle” included residence/accommodation and self-care and “Legal” included testamentary capacity, signing an enduring power of attorney or guardianship, ability to stand for trial. Respondents reported they had contributed frequently to the assessment of clients’ ability to make health or medical decisions (47 respondents: 0% always, 17% often, 59.6% sometimes, 14.9% rarely, 8.5% never), and less often in relation to decisions regarding legal issues (48 respondents: 2.1% always, 14.6% often, 58.3% sometimes, 10.4% rarely, 14.6% never) and lifestyle issues (47 respondents: 21.% always, 27.7% often, 55.3% sometimes, 10.6% rarely, 4.3% never). Participants were least likely to be involved in evaluating clients’ capacity to make financial decisions (46 respondents: 0% always, 10.9% often, 32.6% sometimes, 26.1% rarely, 30.4% never). Respondents were asked (Survey question 11) to select a response of never, rarely, sometimes, often, or always to the question as to how often their contribution to a capacity assessment involves particular approaches ranging from standardized assessment through to unstructured discussion. Discussion with other family team members was most frequently reported (43 respondents: 62.8% always, 23.3% often, 14% sometimes, 0% rarely, 0% never), and interview with family members or

carers (41 respondents: 41.5% always, 26.8% often, 24.4% sometimes, 7.3% rarely, 0% never). There was a similar spread in the pattern of reported frequency of use for structured or semi-structured interviews with a client exploring real world decision-making process (41 respondents: 22% always, 34.1% often, 29.3% sometimes, 9.8% rarely, 4.9% never), unstructured discussion (41 respondents: 26.8% always, 29.3% often, 31.7% sometimes, 7.3% rarely, 4.9% never), standardized assessments (40 respondents: 25% always, 22.5% often, 37.5% sometimes, 7.5% rarely, 7.5% never), non-standardized assessments (41 respondents: 22% always, 36.6% often, 36.6% sometimes, 0% rarely, 4.9% never), and functional skills assessment (39 respondents: 15.4% always, 28.2% often, 35.9% sometimes, 15.4% rarely, 5.1% never). The assessment approaches that were reported by the majority of participants as rarely or never used for capacity assessment were recording and analysis of spontaneous discourse sample (39 respondents: 0% always, 5.1% often, 30.8% sometimes, 20.5% rarely, 43.6% never), checklist of skills or behaviours (37 respondents: 0% always, 13.5% often, 29.7% sometimes, 21.6% rarely, 35.1% never), and questionnaire completed by family members or carers (39 respondents: 7.7% always, 12.8% often, 17.9% sometimes, 17.9% rarely, 43.6% never). In response to Survey Question 13, participants reported frequently assessing the client’s ability to express choice, either verbally or non-verbally (36 respondents: 75% always, 19.4% often, 5.6% sometimes, 0% rarely, 0% never), and their ability to process information in a relevant manner (35 respondents: 60% always, 34.3% often, 5.7% sometimes, 0% rarely, 0% never). Less commonly, they reported assessing client’s understanding of the nature and consequences of their decision (35 respondents: 34.3% always, 28.6% often, 25.7% sometimes, 8.6% rarely, 2.9% never). They also reported the identification of strategies that either assisted or hindered the client’s ability to participate in the autonomous decision-making process (35 respondents: 48.6% always, 42.9% often, 8.6% sometimes, 0% rarely, 0% never). Observation and informal assessment was also reported (Survey Question 15) by participants to include the client’s awareness of their communication impairment (31 responses), the presence of perseveration (28 responses), fluctuations in performance (27 responses), fatigue (26 responses), as well as their pragmatic skills (25 responses). Less commonly indicated observation and informal assessment options were numeracy (18 responses), physical restrictions such as the effect of hemianopia on reading and the effect of hemiplegia or hemianaesthesia on writing (17 responses), emotional lability (15 responses), problem-solving using photographs (15 responses), questioning about physical health (13 responses), and general knowledge (nine responses). One respondent commented that one of the difficulties associated

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with observational informal assessment was the potential for gaps to occur within the assessment. Survey Question 14 explored the use of formal assessment tools in the examination of skills relevant to decision-making capacity and 37 participants responded to this question, with 23 indicating they did not use formal assessments for this purpose. The 14 respondents who indicating that they used formal assessments provided free text responses listing the following tools (listed in order of frequency of mention): Western Aphasia Battery–WAB (sub-tests, for example, yes/no questions) (Kertesz, 2006), Mt Wilga High Level Language Test (Christie, Clarke, & Mortensen, 1986), Cognitive Linguistic Quick Test–CLQT (Helm-Estabrooks, 2001), Measure of Cognitive Linguistic Abilities–MCLA (Ellmo, Graser, Krchnavek, Hauk, & Calabrese, 1995), Boston Diagnostic Aphasia Examination–BDAE (Goodglass, Kaplan, & Barresi, 2000), Comprehensive Aphasia Test–CAT (Sapir, Ramig, & Fox, 2013), Caulfield Language for Cognition Screening Assessment–LFC (Willinck, 1996), Butt Non-Verbal Reasoning Test–BNVRT (Butt & Bucks, 2004), La Trobe Communication Questionnaire–LCQ (Douglas, Bracy, & Snow, 2000), American Speech-LanguageHearing Association Functional Assessment of Communication Skills for Adults–ASHA-FACS (Frattali, Thompson, Holland, Wohl, & Ferketic, 1995), Assessment of Language-related Functional Activities–ALFA (Baines, Martin, & Heeringa, 1999), Communicative Activities of Daily Living (Holland, Frattali, & Fromm, 1999), Cognistat (formerly Neurobehavioral Cognitive Status Examination, see http://www.cognistat.com/peer-reviewed-articles) (Kiernan, Mueller, Langston, & Van Dyke, 1987), and the Australian version of the Mississippi Aphasia Screening Test (AusMAST) (Nakase-Thompson, 2004; Peacock & Douglas, 2012). Methods for interpreting and reporting on assessment findings Participants indicated the degree to which the outcomes of various aspects of assessment influenced their contribution to recommendations regarding a client’s decision-making capacity (Survey Question 12). Information provided through structured discussion with multidisciplinary professionals involved in the client’s care was reported to be very significant in forming their opinion with regards to decisionmaking capacity (34 respondents: 44.1% very significant, 29.4% significant, 26.5% moderate, 0% slight, 0% none). Furthermore, consideration of information gained through interview with the client’s family members or carers (35 respondents: 25.7% very significant, 40% significant, 22.9% moderate, 11.4% slight, 0% none), as well as through the administration of non-standard assessments was also reported to be important when forming opinions regarding capacity (36 respondents: 13.9% very

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significant, 50% significant, 30.6% moderate, 0% slight, 0% none). The information gained from standardized assessments was also rated as important in the formation of their opinion regarding clients’ decision-making capacity (37 respondents: 13.5% very significant, 32.4% significant, 43.2% moderate, 5.4% slight, 5.4% none). Participants were also asked to specify the procedures that would be typically followed if information obtained during assessment was suggestive of borderline decision-making capacity (Survey Question 16). The majority of clinicians indicated that they would generally discuss the case with either another speech-language pathologist (33 respondents: 39.4% always, 36.4% often, 18.2% sometimes, 3% rarely, 3% never) or a member of the multidisciplinary team (34 respondents: 73.5% always, 20.6% often, 5.9% sometimes, 0% rarely, 0% never), with three respondents indicating in free text responses that they would consult with the neuropsychologist and one with an occupational therapist. Approximately twothirds of respondents to this question indicated that at least some of the time, they would carry out further assessment (31 respondents: 16.1% always, 29% often, 32.3% sometimes, 16.1% rarely, 6.5% never), or conduct review assessments at regular intervals (32 respondents: 6.3% always, 43.8% often, 37.5% sometimes, 12.5% rarely, 0% never). The majority of respondents reported on their capacity assessment findings (Survey Question 17) via verbal discussion with the referral source (31 respondents: 54.8% always, 16.1% often, 19.4% sometimes, 0% rarely, 9.7% never) and multidisciplinary team (34 respondents: 58.8% always, 26.5% often, 8.8% sometimes, 0% rarely, 5.9% never), as well as written notes in the client’s medical file (34 respondents: 67.6% always, 23.5% often, 5.9% sometimes, 2.9% rarely, 0% never). One respondent also indicated contributing to discussion within a family meeting in a free text response. Interestingly, three respondents reported they had been involved in presenting their findings regarding the client’s decision-making capacity via attendance at a court hearing (30 respondents: 0% always, 0% often, 3.3% sometimes, 6.7% rarely, 90% never). Satisfaction with current knowledge and practices The majority of participants agreed that the nature of speech-language pathology was ideally suited for contributing to assessments of decision-making capacity. However, a similar number of participants also reported feeling that the speech-language pathologist’s role in the process of assessing decisionmaking capacity was under-valued or not appreciated within their workplace. They also reported feeling dissatisfied with the procedures currently used in their workplace to evaluate decision-making capacity. Furthermore, the majority of clinicians agreed that contributing to the assessment of decision-making

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capacity was one of the more difficult aspects of speech-language pathology practice. The majority of respondents (31/35, 88%) agreed that being involved in assessments of decision-making capacity was a stressful and time-consuming area of their clinical caseload. Predictably, respondents felt that their training did not prepare them for being involved in decisionmaking capacity assessments, with a similar number indicating that further training and education in this area would be beneficial. Many respondents also indicated that they would appreciate the development of guidelines or principles for practice with people with aphasia in the area of decision-making capacity.

Discussion The results from the present study indicated that, within the sampled population, speech-language pathologists were involved in making a contribution to capacity assessments as part of their scope of practice. The recruitment of participants in this study focused on speech-language pathologists who had experience working with an adult neurological caseload. The issues that they reported were consistent with the communication difficulties observed in this population, particularly in relation to the potential for their decision-making capacity to be compromised due to difficulties comprehending verbal and written information or communicate preferences (Benson & Ardila, 1996). While most of the survey respondents indicated that they had been involved in contributing to an assessment of decision-making capacity, such contributions were only reported to have occurred in the acute inpatient or inpatient rehabilitation settings. This is consistent with the findings of a 3-month study completed in a general internal medical ward by Fassassi, Bianchi, Stiefel, and Waeber (2009), which determined that, of the 195 patients included in the study, 157 required an assessment of decision-making capacity. The focus of the inpatient period for this kind of assessment may be attributable to the sudden need for determining consent for urgent medical treatments which may have severe side-effects or fatal outcomes, as well as for decision-making about rehabilitation and discharge destination. Although the present study determined that speech-language pathologists were often involved in decision-making capacity assessments, the frequency of their involvement and, thus, their experience did not appear to be related to the individual clinician’s confidence regarding their involvement in the process or their recommendations. The recent advances in rapid provision of medical intervention for stroke have increased specific attention to the importance and specific difficulties associated with determining capacity to consent to treatment for people with aphasia (White-Bateman, Schumacher,

Sacco, & Appelbaum, 2007), and so this area of practice is likely to increase in the future. The results from the present study highlighted that the process of decision-making capacity assessment is a highly variable and complex process. It was noted that clinicians were involved in capacity assessments for clients of various diagnoses. The characteristics of the decisions needing to be made were also variable and surrounded lifestyle, health and medical, and financial issues. Clinicians utilized a variety of both formal and informal assessments, as well as discussion with multidisciplinary professionals or the client’s family members to inform their recommendations regarding the client’s decisionmaking capacity. Such findings are consistent with Bellhouse et al.’s (2001) proposal that decisionmaking capacity may vary depending on the subject of the decision, the decision-maker themselves, and the characteristics of the decision needing to be made. It is apparent that there is a need for skillful administration of individualized assessment linked closely with the nature of the decisions about which capacity is queried, and so the presence of aphasia seriously threatens the validity of the administration of capacity assessments which were developed and standardized for other clinical populations. When utilizing formal assessments, speechlanguage pathologists reported primarily assessing the four main areas of language; auditory comprehension, verbal expression, reading, and writing. In addition to assessing language skills, respondents reported also taking into account their client’s ability to express choice, process relevant information, and understand the consequences of the decision at hand. This finding was consistent with recommendations outlined in the literature (Critchley, 1970; Enderby, 1994), suggesting that such skills are integral to the process of decision-making capacity. The reported involvement in court hearings was consistent with Huer and Yaniv’s (2006) suggestion that speech-language pathologists may be required to participate in this process. The reported need for further training and guidance in this complex area of practice was consistent with previously identified professional development needs in relation to speech-language pathologists’ contribution to the evaluation of decision-making capacity (Ferguson et al., 2010), and consistent with more general research across a range of disciplines which contribute to the assessment of decisionmaking capacity (Kirschner, Stocking, Brady Wagner, Foye, & Siegler, 2001). Limitations The main limitation of this study was the sample size, involving only 59 participants from only one country, of whom only 51 had experience in this area of assessment. It was also noted there appeared to be a bias to speech-language pathologists with experience in

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Aphasia and decision-making

this type of assessment who responded to the survey, with 51 of the 59 participants indicating experience. This indicates a need for further studies in other countries, or with an international focus. The perspectives of speech-language pathologists without experience with this type of assessment is considered important to explore, in order to more accurately gauge how commonly this kind of issue arises in the field, and/or whether lack of experience reflects avoidance or transfer of this kind of assessment to others. In an analysis of the use of online and email surveys, Ilieva, Baron, and Healey (2002) observed that the expected response rate for an online survey may vary widely. While surveys conducted via email are typically associated with a higher response rate due to personalization, this method was considered unsuitable for the present study to enable anonymous responses. Due to the recruitment method and use of an online survey in the current study, the researchers were unable to calculate a response rate as the number of potential participants approached in the initial recruitment was unknown. The majority of respondents reported previous involvement in the assessment of decision-making capacity, thus the population sample was likely to be biased toward experienced speech-language pathologists in the area of adult neurogenic communication disorders. Further research is needed to establish the extent to which the present findings are representative of the wider field of speechlanguage pathology. In the survey used in this study there was limited collection of demographic data, and further research in this area could usefully collect and consider the effects of age, gender, education level, and further professional development training in this area. Further research is needed to gain information regarding the participation of speech-language pathologists in decision-making capacity assessments in other service delivery settings. Additionally, given that the present research was conducted within Australia, it is important to be cautious in generalizing findings to other countries. It also needs to be noted that the present research sought to restrict its focus to aphasia in the absence of significant other cognitive impairment, for example, in comparison to the issues that arise with Primary Progressive Aphasia (Kirshner, 2012). In doing so, the intention was to focus on the communicative aspects of the assessment of decisionmaking capacity rather than those related more particularly to cognition. The present study was successful in gaining preliminary information regarding the current practices of speech-language pathologists involved in the assessment of decision-making capacity. Whilst provision for free text responses were provided in an attempt to allow for unanticipated responses and the availability of further descriptive information, the design of this survey did not allow for the collection of detailed information to be gathered regarding the clinician’s involvement in the assessment process, including the specific diversity of practices used for

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different clients and decisions (see potential future research directions below for alternative methods). Clinical implications The diversity of assessment approaches identified in this study suggests that a “one size fits all” approach to formal assessment for decision-making capacity is unrealistic and unsuitable for such a complex process. Although use of a single formal or informal assessment may be unsuitable during this process, the formation of guidelines and principles for capacity evaluation for people with aphasia may assist clinicians in developing the professional education and competencies necessary to feel confident in the assessment process. As previously outlined, it is not the role, nor the responsibility of the speech-language pathologist to decide whether an individual possesses decisionmaking capacity (Udell et al., 1980). Hence, a major component of the speech-language pathologist’s assessment approach necessarily involves liaison with other multidisciplinary professionals involved in the client’s care, as well as the client’s family members to ensure that all assessments of the client are conducted in ways that allow for the client’s communication effectiveness to be maximized. There is a general movement in medical practice toward recognizing that decision-making capacity is not a simple matter of being present or not, but instead there is a recognition of decision-making as a shared and negotiated process. Stein and Wagner (2006) in their discussion of this approach highlight that the presence of aphasia is a situation in which such a dynamic and responsive approach is essential. As Patchet, Allan, and Erksine (2012) discuss with reference to a descriptive single case study involving fluctuating cognitivecommunication impairment, “A shift in thinking from ‘Is this person capable?’ To ‘How can this person’s capacity for this particular task be revealed?’ is extremely important” (Patchet et al., 2012, p. 81). The confidence of clinicians involved in the decisionmaking capacity assessment process may be positively influenced by the empirically-derived information about the current practices of other speech-language pathologists reported within this paper. This research also informs the ongoing understanding of the scope of practice of speech-language pathologists in this area. As part of this process, it is important for other professionals involved in the assessment process to be educated in relation to the significance and relevance of the contribution of speech-language pathologists.

Future research More detailed knowledge of current practices is necessary to guide the development of educational materials which would further enhance the knowledge and confidence of clinicians in their contributions

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to capacity assessments. For example, the design of the present survey was not able to explore the relationship between accommodation and financial decision-making capacity, nor the ways in which speech-language pathologists adapt their assessment tools for this kind of assessment would warrant further exploration. Descriptive case studies and reports utilizing ethnographic methodologies would assist the development of a diverse and detailed evidence base. Whilst beyond the scope of the present study, further research examining the perspectives and experiences of clients and their families in relation to the assessment of decision-making capacity is also needed.

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Conclusion The findings of this study suggested that speechlanguage pathologists commonly contributed to capacity assessments, particularly in acute inpatient and inpatient rehabilitation settings. Speech-language pathologists reported use of a variety of assessment materials and methods to form recommendations regarding a client’s capacity and, while generally confident about contributing to such assessments, reported wanting more professional development in this area of practice. Based on research findings, the present study provides preliminary empirically derived guidance for speech-language pathologists involved in the assessment of decision-making capacity. However, further research regarding capacity assessment is warranted.

Acknowledgements The present research was conducted as part of the requirements for the Honours research program for the Bachelor of Speech Pathology degree, University of Newcastle, NSW, Australia, by Kerryn Aldous (2011) and Rhiannon Bray (now Tolmie) (2008) under the supervision of Professor Alison Ferguson and Professor Linda Worrall. We gratefully acknowledge the contribution to the early development of this area of research of Professor Elizabeth Armstrong, Dr Rhonda Buskell, Mr John McPhee, Dr Sue Sherratt, and Professor Leanne Togher.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

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