Capacity Assessments and Informed Consent Decisions for Patients with Aphasia: Equity and Access to Stroke Care

World Stroke Congress 2023, Toronto

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Stages of Decision Making

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Communicative Access and Supported Conversation for Adults with Aphasia (SCATM)

Supported Conversation for Adults With Aphasia (SCA™) is an evidence-based communication method developed by the Aphasia Institute that can facilitate the understanding and expression of spoken and written messages, as well as demonstrate respect for the competence of the person with aphasia. The guiding principle for this method is that the language barrier in aphasia can be circumvented with the use of individualized techniques and tools designed to enable conversation on simple and complex topics.

SCA™ is designed to help people who “know more than they can say” express their opinions and feelings in a way allows them to be understood and makes them feel valued and respected.  By using the SCA™ method, conversation partners (such as, doctors, nurses, family members, or friends) can help break down the communication barriers and help people with aphasia engage in all types of  conversations, including decision-making conversations.

SCA™ is designed to help people who “know more than they can say” express their opinions and feelings in a way allows them to be understood and makes them feel valued and respected.  By using the SCA™ method, conversation partners (such as, doctors, nurses, family members, or friends) can help break down the communication barriers and help people with aphasia engage in all types of  conversations, including decision-making conversations.

CLICK HERE for our FREE: Introduction to SCA™ eLearning Module

CLICK HERE for our FREE resources on Talking to Your Family Member/Friend with Aphasia: Conversation Basics

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Short Summary of SCATM Techniques

CLICK HERE to download the PDF of the Short Summary of SCATM Techniques

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The Goals of SCATM

  1.  Acknowledge the Competence of the Adult with Aphasia.​
  2.  Help the Adult with Aphasia to Reveal his or her Competence.

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Acknowledge Competence

People with aphasia need others to believe they are competent and have more understanding and social skills than may be apparent.​

Acknowledging competence can be accomplished through using a tone of voice that is natural, choosing adult or complex topics for discussion, and integrating techniques into natural talk.  Helpful strategies include:

  • Saying “I know that you know” at appropriate times.
  • Attributing communication breakdowns to your limitations as a communicator, “You know I’m not good at explaining these things clearly!”
  • Dealing openly when you have to communicate with a partner to obtain or give information.
  • Despite your best efforts, there will be times when communication breaks down – it is valid and comforting to acknowledge the shared experience of being frustrated.

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Revealing Competence

Message IN

  • There are communication techniques that can help ease the exchange of information and feelings between the conversation partner and the person with aphasia.
  • Getting the message IN is a matter of modifying the way you converse to ensure you are being understood by the person with aphasia.  Some methods to try include:
    • Using short, simple sentences and an expressive voice.​
    • Using gestures when conversing.​
    • Writing down keywords or topics, so that you can both see them together – e.g., PLAIN, in large, bold print.​
    • Using pictures to illustrate an idea, and focusing on one picture at a time.​
    • Eliminating distraction – noises, other people, or multiple visual materials.​
    • Observing the person’s facial expression, eye gaze, body posture or gestures to determine their level of comprehension.

Message OUT

  • Getting the message OUT might be a bigger challenge for someone with aphasia.  To help them express their thoughts to you, try:
    • Asking yes or no questions.​
    • Asking one question at a time.​
    • Asking fixed choice questions such as, “Do you want water or coffee?”​
    • Phrasing yes or no questions from general to specific.​
    • Asking him/her to gesture, point to objects or pictures, or write key words, such as “Can you show me…”​
    • Giving him/her sufficient time to respond.

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Revealing Competence – VERIFY the Message

  • Verifying the message is important to making the person with aphasia feel understood and valued.  Summarize slowly and clearly by saying, “So let me make sure I understand” and using the following methods:
    • Adding gestures or written key words.​
    • Repeating the person’s message.​
    • Expanding on what you think the person might be trying to say.​
    • Recapping the conversation if it was a long one.

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References

  1. Kagan, A., Shumway, E., & MacDonald, S. (2020). Assumptions about decision-making capacity and aphasia: Ethical Implications and Impact. Seminars in Speech and Language41(03), 221–231. ​
  2. Jayes, M., & Palmer, R. (2014). Initial evaluation of the consent support tool: A structured procedure to facilitate the inclusion and engagement of people with aphasia in the informed consent process. International Journal of Speech-Language Pathology16(2), 159–168. ​
  3. Carling-Rowland, A., Black, S., McDonald, L., & Kagan, A. (2014). Increasing access to fair capacity evaluation for discharge decision-making for people with aphasia: A randomised controlled trial. Aphasiology28(6), 750-765.​
  4. Beauchamp, T.L. & Childress, J.F. (2019). Principles of Biomedical Ethics, 8th ed. New York, NY: Oxford University Press.​
  5. UN. (2016). Convention on the Rights of Persons with Disabilities and Optional Protocol. ​
  6. Ferri, D. (2018). Reasonable accommodation as a gateway to the equal enjoyment of human rights: From New York to Strasbourg. Social Inclusion6(1), 40. ​
  7. Carling-Rowland, A., & Wahl, J. (2009). The Evaluation of Capacity to Make Admission Decisions: Is It a Fair Process for Individuals with Communication Barriers. Medical Law International10(3), 171–190.​
  8. McCormick, M., Bose, A., & Marinis, T. (2017). Decision-making capacity in aphasia: SLT’s contribution in England. Aphasiology31(11), 1344–1358. ​
  9. Suleman, S., & Hopper, T. (2016). Decision-making capacity and aphasia: speech-language pathologists’ perspectives. Aphasiology30(4), 381–395.​
  10. Brady Wagner, L.C. (2018). Ethical framework of supporting medical decision making for persons with aphasia. Perspectives of the ASHA Special Interest Groups3(2), 80–87. ​
  11. Penn, C., Frankel, T., Watermeyer, J,. & Muller, M. (2009). Informed consent and aphasia: evidence of pitfalls in the process. Aphasiology23(1), 3–32. ​
  12. Rodriguez-Prat, A., Monforte-Roy, C., Porta-Sales, J., Escribano, X., & Balaguer, A. (2016). Patient perspectives and dignity, autonomy and control at the end of life: Systematic review and meta-ethnography. PLoS One. 2016;11(3):1-18. ​
  13. Rada, R. T., Porch, B.E., & Kellner, R. (1975). Aphasia and the expert medical witness. The Bulletin of the American Academy of Psychiatry and the Law3(4), 231–237.​
  14. Eadie, T.L., & Charland, L.C. (2005). Ethics in speech-language pathology: beyond the codes and canons. Journal of Speech-Language Pathology & Audiology29(1), 27–36.​
  15. Braunack-Mayer, A,. & Hersh, D. (2001). An ethical voice in the silence of aphasia: judging understanding and consent in people with aphasia. Journal of Clinical Ethics12(4), 388–396.​
  16. Kagan, A., Black, S.E., Duchan, J.F., Simmons-Mackie, N., & Square, P. (2001). Training volunteers as conversation partners using “supported conversation for adults with aphasia”(SCA). Journal of Speech, Language, and Hearing Research44(3), 624-638.​
  17. Kagan, A. (1998). Supported conversation for adults with aphasia: methods and resources for training conversation partners. Aphasiology12(9), 816–830.​
  18. Kagan, A. (2019). Supported conversation for adults with aphasia (SCA). In J.S. Damico & M.J. Ball (Eds.), The SAGE Encyclopedia of Human Communication Sciences and Disorders (pp. 1885-1887). SAGE Publications, Inc.​
  19. Kagan, A. & M.D.Z. Kimelman. (1995). Informed consent in aphasia research: myth or reality. Clinical Aphasiology. 1995;23:65-75. ​
  20. Kagan, A., Shumway, E., Thesenvitz, J., & Brookman, C. (2019, July 18). Aphasia Institute Community Hub: Introduction to SCA™ eLearning. Aphasia Institute. ​
  21. Zuscak, S.J., Peisah, C., & Ferguson, A. (2016). A collaborative approach to supporting communication in the assessment of decision-making capacity. Disability & Rehabilitation38(11), 1107–1114.​
  22. Kim, E.S., Suleman, S., & Hopper, T. (2020). Decision Making by People with Aphasia: A Comparison of Linguistic and Nonlinguistic Measures. Journal of Speech, Language, and Hearing Research63(6), 1845–1860.​
  23. Brady Wagner, L.C. (2003). Clinical ethics in the context of language and cognitive impairment: rights and protections. Seminars in Speech and Language24(4), 275–284. ​
  24. Rose, T.A., Worrall, L.E., Hickson, L.M., & Hoffmann, T.C. (2011). Exploring the use of graphics in written health information for people with aphasia. Aphasiology25(12), 1579–1599. ​
  25. Dunn, L.B., & Jeste, D.V. (2001). Enhancing informed consent for research and treatment. Neuropsychopharmacology : Official Publication of the American College of Neuropsychopharmacology24(6), 595–607. ​
  26. Guo, K.L. (2020). DECIDE: A decision-making model for more effective decision making by health care managers. The Health Care Manager39(3), 133–141. ​
  27. MacDonald, S. & Johnson, C. (2005). Assessment of subtle cognitive-communication deficits following acquired brain injury: A normative study of the functional assessment of verbal reasoning and executive strategies (FAVRES).  Brain Injury19(11), 895–902. 
"This course has given me lots of tools to communicate with my clients with aphasia. It has given me new ideas and visions and I’m looking forward to share the SCATM method with my colleagues and other professionals in my rehabilitation centre. Thank you for the course! "
- Anonymous
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