We are constantly making decisions that affect the way we live our lives. Some decisions are potentially life changing (“shall I take a job overseas, leaving behind family and friends?”), whilst others are more mundane (“tuna or cheese on my sandwich?”). Nevertheless, the ability to take part in the decision making process, no matter how complex the decision to be made, hugely dictates the amount of control we have over our own lives.
The presence of aphasia or other type of communication difficulty can have clinical implications for a person who is attempting to maintain control over their life decisions. Just because someone may have a communication or cognitive impairment does not mean that they lack the capacity to make a decision; rather, that they may need some support to take part in the decision making process.
Statutory Laws regarding decisional capacity include The Mental Capacity Act UK 2005 and the Powers of Attorney Act 2008 (Queensland). The Mental Capacity Act (MCA) 2005 details that a person lacks capacity if “he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or the brain.” This Act defines capacity as the ability to understand the information provided, retain that information, weigh up the pros and cons regarding the decision and finally, communicate a decision.
Despite documents produced by the American Speech and hearing Association (2007), Speech Pathology Australia (2003) and the Royal College of Speech and Language Therapists (2014) outlining the many important roles of SLTs in capacity assessments, there is a general lack of consensus in the literature regarding how capacity assessments should take place, and indeed, who should be involved.
Some lists of recommended disciplines omit SLTs input altogether (Zuscak et al, 2016) whilst others, such as ‘The Mental Capacity Implementation Programme’ are rather over-inclusive, suggesting that “anyone can assess capacity…”.
Furthermore, there is evidence that SLTs are often concerned about their role within capacity assessments (Devereux et al, 2016), for reasons which may include a lack of confidence in the assessment process, concerns about a conflict in their role or a lack of time and resources (Volkmer, 2016).
So, do SLTs have a role in aphasia capacity assessments or not? The role of the SLT in aphasia capacity assessments is becoming increasingly popular in the literature. A 2010 paper by Ferguson et al examined the differing roles that SLTs felt they had been required to adopt when involved in capacity assessments. Roles included assessor, consultant, mediator, facilitator, leader, negotiator and educator.
However, perhaps the most significant role of an SLT in aphasia capacity assessments is their ability to maximise a person’s communicative potential. The skills of the SLT in this area are paramount as the strategies used are often not well known by other disciplines (Zuscak, 2016).
It is important that a capacity assessment takes place within a multi-disciplinary team. Depending on the decision, a multitude of expertise may be required (for example, representatives from financial, medical, law and/or social services), each with their own defined role. Within that team, the SLT can support the decision making process at any of the different levels outlined by the MCA. Zusack et al explored this role in some detail in their 2016 paper. Their key points are summarised below.
Understanding and retention of relevant information
• Check hearing and vision and, if your client requires any aids, ensure they have these available and working during the assessment. If a problem is suspected, refer onto the relevant professionals such as audiology, orthoptist or occupational therapist.
• Problems with auditory processing? Make sure the assessment is carried out in a quiet room and limit background noise.
• If your client has difficulty ‘tuning in’ to speech, try alerting them using lead in phrases before getting to the crux of the information. For example, you could say “As we were talking about earlier…” or “I have been asked to talk with you today about….”
• No problems tuning in but processing becoming more difficult as more information is added? Use ‘chunking’ – only give short snippets of information at a time.
• Emphasise key words. Repeat these words. Try writing key words down to help your client remember what you have said.
• Repeat key themes and ideas.
• Repeat information in a different way, using different words or using a different format (use gesture, writing, photographs, pictures, symbols) to help support comprehension and retention.
• Remember to pause! Silence is useful, especially after providing important pieces of information. This will allow your client time to absorb and process what you have said.
• Provide aphasia friendly versions of any important documents. Take the time to go through these documents so that your client becomes familiar with their content.
• Allow your client time to process information and formulate their response.
• Ensure longer and more complex sentences are broken down into shorter, more simple sentence structures.
• Ensure those involved in the assessment are aware of any strategies they may need to employ to support your client’s communication.
• It is helpful to meet with those involved before the assessment to review the questions they wish to pose and come to an agreement about the best way to present this information.
Weighing up the pros and cons of the decision
Those with cognitive communication disorders may struggle with attention, memory and perception. Whilst this may affect auditory comprehension, difficulties in these areas may also impact on problem solving, reasoning and judgement. Request a non-linguistic cognitive assessment. You may be able to work together with this professional to develop some further strategies to help your client with this area of the assessment. Some of the ideas above may also be helpful here too.
Communicating a decision
So, your client has understood and retained the relevant information and has weighed up the consequences of their decision. How can you help them communicate their choice?
• Train those involved in the assessment about your client’s preferred method of expressive communication.
• Presence of a familiar person can be helpful to help interpret any communicative attempts.
• If a communication aid is required (either low or high tech) ensure this is available and if applicable, fully charged.
• It can often take more time for someone with a communication difficulty to express themselves. It is important that they are given this time and do not feel pressurised or rushed.
• Encourage your client to make use of total communication strategies such as gesture, writing, drawing and pictorial support.
• Make use of fixed choices or alternatives and incorporate ways to make the selection process as simple as possible. For example, “if you want to do A, look at this photograph. If you want to do B, look at that photograph.”
• Repeated checks of information are required. Closed questions (those requiring a yes/no response) can be useful in ensuring your client’s message has been interpreted accurately.
• Repeat the assessment to ensure that your client’s response remains consistent.
Aphasia capacity assessments are certainly an area in which SLTs can offer vital support. It is clear that SLTs can provide assistance, not only to the clients, but also to the multidisciplinary team as a whole. SLTs have the skills to work with others to promote supported decision making for people with communication difficulties, and in doing so, can continue to help clients maintain control over their own lives.