JCPSLP Vol 17 Supplement 1 2015_lores

Ethics in the workplace

Communicatively accessible healthcare environments

Ethics and informed consent Deborah Hersh and Melanie Breese talk to Suze Leitão

Suze When most clinicians reflect on the topic of informed consent, they tend to think about it in the research context. The topic of this issue of ACQ – Communicatively Accessible Healthcare Environments – made me reflect on the role that informed consent plays in making healthcare environments accessible for our clients. It reminded me that informed consent is also critically important in making decisions, for example, about treatment. Deborah Informed consent for treatment is “not a discreet event but a process of information exchange and autonomous decision making” (Berglund, 2004, p. 79). It involves sharing and understanding the details, including benefits and risks, and choices about treatment, making a voluntary, competent decision, and being able to express that decision. However, we know as speech pathologists that it is precisely a difficulty with elements of that process which often prompts a person to seek our services in the first place. Informed consent for treatment can be a difficult area when judging whether someone has decision-making capacity, whether to rely on a family member as a proxy or to refer for guardianship. For those with capacity but with communication disorder, speech pathologists may need to be creative about how to make information truly accessible. So when we think about informed consent for treatment, it is useful to look beyond the classic choice between two medical procedures or signing on the dotted line of a consent form (important as those may be) to also consider how we might enable our clients to be more fully informed and involved in negotiations about intervention. Body and McAllister (2009) point out that access to meaningful information is important for health, and reduces client and carer stress. The timing, format, and manner of delivery are all important. Information may need to be shared regularly and reviewed over time. Suze Yes, there is a responsibility for us, as speech pathologists, to make sure our healthcare environments and the assessments and interventions we offer within them, are as accessible as possible. We need to ensure we present information in a clear and concise manner. We have to remember that our clients, and their families, may not being making a fully informed decision about the therapy process. Sometimes, I think we assume that “implied consent” is the same thing as “informed consent”.

Deborah Speech pathologists know about the importance of presenting oral and written information in accessible ways, using alternative and augmentative communication, involving family members appropriately, adapting the environment effectively to promote communication and checking for feedback that information has been understood. In addition, ethical principles can help guide the process such as through respecting autonomy, veracity or telling the truth, and beneficence or doing the best one can to bring benefit to the client. However, it is also worth stating the obvious – that the quality of the relationship and the level of trust between clinician and client have a contribution to making information accessible. Obtaining informed consent for treatment is not just giving information but involves sharing information, something which is more effective when two people understand each other well. Perhaps it is also worth adding that if the speech pathologist is viewed as accessible (easy to talk to, someone who really listens, someone who is available to answer questions and provide reassurance), then it is more likely that the information provided will be accessible too. Suze I agree. On a number of occasions, family members have talked to me about their experiences with other therapists. Sometimes, they have not really felt comfortable with what was going on in therapy for their loved one, and have not really understood the reasons behind it. However, this has been difficult for them to tackle because of the assumption that the therapist is the expert and must know what he or she is doing. One of the suggestions I talk through with them is to try to make an appointment to sit and talk through the therapy process with the speech pathologist, and ask questions about the goals, the reasons underlying the approach, and the process itself. It seems as though in these cases, the clinician has not been viewed as “accessible”. Melanie, in your clinical practice, how do you deal with consent for treatment in people with dementia and cognitive damage who have already been judged as “lacking in competence”? Melanie I try to consider several ethical principles in these cases: 1. Respect for human life and dignity.

Deborah Hersh (top), Suze Leitão (centre) and Melanie Breese

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JCPSLP Volume 17, Supplement 1, 2015 – Ethical practice in speech pathology

Journal of Clinical Practice in Speech-Language Pathology