Severe communication disability (little or no speech; complex communication needs; severe communication impairment, severe communication disorder) raises many ethical issues in the clinical work setting for speech pathologists, clients, and families.
If you think about ‘ethical issues’ for clients with severe communication disability arising from any condition, what springs to mind?
So far, I have had one response that can get things started (via Twitter) – I do not identify responses nor direct quote.
Communicating for Informed Consent to Treatment: If a client has severe communication disability, how do they then take part in the informed consent process (for assessment and treatment)? The communication disability itself may make it hard for the clinician to know if they understand information to make an informed choice. This issue was raised as particularly relating to adults with communication disability. However, it could potentially arise also with children, who also have rights in relation to treatment decisions, and to being informed about their care.
So, what other issues arise? you can tweet me @bronwynah and I will write about it here (adding as they come in) or else you can comment directly onto the blog. Thank you!
Clients, families, and clinicians – feel free to respond here!
These are the issues brought through Twitter comments on ethics and AAC:
People assuming cognitive impairment if the person cannot speak – this might impact on them not being presented with information, not having consent sought (even though people with intellectual disability ought to be given information and the opportunity to give consent within their capacities according to the decision being made).
A preference for the oral modality (speech) over other modalities – are other modalities for communication explored? eg writing, gesture, use of communication aids. If speech is more highly valued and the person has little or no speech, values beliefs and attitudes towards other modalities might impact upon decisions made.
Establishing the client’s own preferences for assistive technologies or other strategies when they have no other way to communicate. This issue was raised particularly in relation to people with severe physical disabilities as well as severe communication disabilities. Also, that people with good intentions might not take the person’s preferences into account if the person ‘pushes away’ a communication device, or might assume this means rejection outright – either way, it is an ethical decision to consider the person’s preferences and whether or not to proceed with an option, in a risk/benefit approach. At which point are the person’s preferences at the time discounted or influential over the decision to proceed?
The person’s AAC system being their ‘communication’ forms part of their identity, yet vocabulary design and layout might be influenced in design by their communication partners. The ethical issues arising from this include autonomy over design as reflecting the person’s own preferences over those of their communication partners. Communication partners will need to balance their support of the person’s autonomy with the principle of ‘beneficence’ and ‘non-maleficence’ over design. It is common for this to be debated in relation to the use of ‘swear words’ or political statements on a communication board, that might not fit with the views of parents, teachers, or other communication partners. Who decides the vocabulary, and is it a matter of balancing perceived harms and benefits for both options considered? Ultimately, the AAC system needs to reflect the person’s own voice, and not those of the person’s communication partners. In the case of swear words, some risks be balanced in similar ways as by teaching children who use natural speech (e.g., the social impact of swear words and ‘pitch’ in communicating formally and informally with others, communicating when angry, communicating according to the social situation).