AN AUGMENTATIVE AND ALTERNATIVE VOCABULARY FOR NON-SPEAKING PATIENTS TO PARTICIPATE IN THEIR GOALS OF CARE/END-OF-LIFE DISCUSSIONS IN INTENSIVE CARE

Abstract

This dissertation explores the vocabulary needed by non-speaking patients who use Augmentative and Alternative communication (AAC) to participate in their Goals of Care/End of Life (GoC/EoL) discussions in Intensive Care (ICU). Chapter One provides a foundation for this thesis, by describing adults who are non-speaking in Intensive Care (ICU): the circumstances that lead to them being non-speaking, barriers to their use of aided and unaided communication, and risks associated with not being able to communicate in the ICU. To set the context for the importance of AAC services, strategies and tools for non-speaking patients, this chapter begins with a review of the literature on the moral, legal, and ethical arguments for supporting patients to be involved in any discussions and decisions about their care and medical treatments while in ICU. The review shows the gap in knowledge of AAC for GoC/EoL discussions and decision making and the clinical need that form the rationale for the research question. Chapter Two presents a qualitative study that explores the experiences of adult patients who had been non-speaking and their families during their ICU stay when the patient used AAC to discuss their GoC/EoL preferences and decisions. Themes emerging from the data highlight the unmet communication needs of these patients and the need for further development of a AAC vocabulary system that can improve patients' ability to participate in their own GoC/EoL discussions. Chapter Three presents an Inclusive Design study that involved collaborative design with patients who use AAC to create a new AAC vocabulary system for GoC/EoL discussions in ICU using a high-tech, speaking software platform. This study resulted in a high-resolution working prototype that, once refined, could be made available worldwide using an online sharing portal. Chapter Four presents a survey study that explores health professionals’ perspectives of this prototype designed in Grid 3 speaking software (Sensory Software). This study found that health professionals agreed that 70% of the GoC vocabulary would enable non-speaking people to communicate during their GoC/EoL discussion. Participants suggested over 100 new phrases to enhance the vocabulary, and this will be used to make another prototype ready for testing with non-speaking patients in ICU during their GoC discussions and decision-making. Finally, Chapter Five reviews the purpose of this dissertation and gives an integrated overview of the overall findings. This chapter discusses the contributions of this dissertation to clinical practice in ICU as well as it’s contributions to the field of AAC. Equipment recommendations are made to enhance the AAC vocabulary in clinical practice in ICU. Design improvements, clinical trials of the GoC/EoL vocabulary and knowledge translation approaches are recommended. Chapter Five also focuses on the rights of non-speaking patients and posits that results from this dissertation could form part of a moral argument for greater patient agency and inclusion in ICU. These patients have a right to – and wish to – participate in all aspects of daily living, including engaging in shared decision-making with their family and health care staff about their care during critical healthcare treatments and possibly during the twilight of their life.