Case Study: Chris refuses any AAC input until his need to communicate is overwhelming
Abstract:
This study shows that people with MND may not always want to accept an
AAC system even when others feel it is highly appropriate. This case raises
issues about the balance between respecting a client’s choices and ensuring
he/she has a means through which to express independence and decision
making.
Presentation:
Chris (52) was referred to speech and language therapy (SLT) about 6 months after being diagnosed with MND. He was experiencing mild-swallowing and intelligibility problems. His main concern was swallowing. Speech was very much a side issue. He lived alone, with few social contacts and no close family.
Following an initial SLT appointment it was agreed that Chris would be reviewed every three-months. In the meantime he had appointments to see a physiotherapist and occupational therapist for mobility and daily living issues. Over time it was reported, by other professionals, that Chris’ speech was deteriorating and that SLT input was required. At the three-month review, Chris again wanted advice regarding his swallowing but still did not see speech as a problem. The SLT raised communication several times but Chris made it clear that he did not want to discuss this. His view was that his basic needs were being met and that professionals should try harder to understand him.
As the year progressed, a number of health and social care professionals becomes involved with Chris. All of them experienced increasing problems with communication and all offered advice to Chris that he should talk to the SLT about options for communication. This made Chris quite angry and led, in some instances, to his refusal to see those professionals whom he felt were not respecting his decisions.
At the latter stages of his disease, when speech was unintelligible and home carers were concerned about his safety, Chris reluctantly accepted the loan of a LightWriter but would only use in extreme circumstances, even when it was in his apparent interest to communicate his needs.
Discussion:
This example is not typical but reveals the complexity of personal autonomy and professional conflicts between respecting a person’s right to chose and ensuring they have a mechanism for actually expressing choice. There is much that can be said about Chris’s psychological/emotional state but the basic issue here was of someone not wanting to take up the seemingly logical or most obvious solution to his communication problems. This proved to be very problematic for the professionals involved in his care as well as for Chris.