Increasing access to fair capacity evaluation for discharge decision-making for people with aphasia: A randomised controlled trial

Abstract

Background: Every competent person in Ontario has the right to decide on a discharge destination. If capacity to consent to such a decision is in doubt, it is evaluated. The current process is largely inaccessible to people with aphasia, there are no methods to help someone overcome communication barriers and demonstrate an understanding of information and an appreciation of the consequences of a decision. Health care professionals who evaluate capacity also report significant problems in communicating with this population. Competent individuals with aphasia have erroneously been found lacking in capacity.

Aims: To develop and test the effectiveness of a communicatively accessible capacity evaluation tool with communication training supports; thus, allowing health care professionals to evaluate more equitably the capacity of people living with aphasia to consent to be admitted to long term care.

Methods & Procedures: The Communication Aid to Capacity Evaluation (CACE) was developed and validated. Thirty-two social workers were partnered with 32 competent participants with aphasia, and randomly divided into an experimental and control group. The social workers were blinded to the participants with aphasia’s capacity. Both groups administered the current capacity questionnaire. The experimental group evaluators were subsequently trained to use the CACE and introduced to supportive communication techniques. Following a 2-week interval, this group administered the CACE, and the control group re-administered the current capacity questionnaire. The 64 evaluations were recorded, and independent speech language pathologists administered standardised assessments.

Outcomes & Results: Using the current capacity questionnaire one competent participant was found lacking in capacity, and one-third of social workers were unable to determine capacity. Following the introduction of the CACE with communication training, the evaluators in the experimental group were able to accurately determine capacity. Standardised measures showed a statistically significant difference between the two groups. The experimental group demonstrated improved communication skills [F(2, 29) = 12.03, p = .002, d = 1.13], and successful transfer of information increased [F(2, 29) = 10.51, p < ·003, d = .99]. Participants with aphasia using the CACE reported an increased ability to communicate information (t = 3.322, p = .000) and decreased frustration (t = 3.958, p = .002).

Conclusions: The CACE was an effective capacity evaluation tool for people living with aphasia. Communication support allowed for increased transfer of information demonstrating both understanding and appreciation of a decision. Evaluators were better able to determine capacity. This challenging and vulnerable population’s right to decide where and how to live was better protected.

Keywords:

• Aphasia
• Capacity
• Evaluation
• Discharge
• Accessible

The author would like to thank her doctoral supervisor and committee and the Institute of Medical Science, University of Toronto. The author would also like to thank the speech language pathologists, social workers and research participants involved in this study, the Aphasia Institute, York Durham Aphasia Centre, Aphasia Centre of Ottawa, Western University Speech Pathology Clinic, Sunnybrook Health Sciences Centre, The Ottawa hospital, Providence Health Care, North York General Hospital, London Health Sciences Centre and the Aphasiology reviewers.

This work was supported by the Brill Chair of Neurology, Ontario Graduate Scholarship, Peterborough K.M. Hunter Graduate Studentship, Government of Ontario/Paul and Adele Deacon and the Government of Ontario/Heart and Stroke Foundation of Ontario Graduate Scholarships in Science and Technology.

Notes

¹ The effect size measures the strength of the relationship between two variables. The greater the effect size, the greater the practical or clinical significance of the results (Thalheimer & Cook, 2002).