Communication Matters—Pitfalls and Promise of Hightech Communication Devices in Palliative Care of Severely Physically Disabled Patients With Amyotrophic Lateral Sclerosis

Abstract

Amyotrophic lateral sclerosis (ALS) is the most common motor neuron disease, leading to progressive paralysis, dysarthria, dysphagia, and respiratory disabilities. Therapy is mostly focused on palliative interventions. During the course of the disease, verbal as well as nonverbal communicative abilities become more and more impaired. In this light, communication has been argued to be “the essence of human life” and crucial for patients' quality of life. High-tech augmentative and alternative communication (HT-AAC) technologies such as eyetracking based computer devices and brain-computer-interfaces provide the possibility to maintain caregiver-independent communication and environmental control even in the advanced disease state of ALS. Thus, they enable patients to preserve social participation and to independently communicate end-of-life-decisions. In accordance with these functions of HT-AAC, their use is reported to strengthen self-determination, increase patients' quality of life and reduce caregiver burden. Therefore, HT-AAC should be considered as standard of (palliative) care for people with ALS. On the other hand, the supply with individually tailored HT-AAC technologies is limited by external and patient-inherent variables. This review aims to provide an overview of the possibilities and limitations of HT-AAC technologies and discuss their role in the palliative care for patients with ALS.

Communication and cognitive impairments and health care decision making in MND: A narrative review

“…Exposure to unnecessary vulnerability is experienced by some patients when accessing AAC. The value of AAC to carers has been identified in reducing carer burden, facilitating greater rewards and social closeness, and reducing difficulty of providing care for people with ALS using AAC . AAC has a critical role in enabling patient autonomy; however, challenges to accessing AAC are reported and are unacceptable.…”

“…8,9,13,48 The studies included in this review, as well as the broader litera- The value of AAC to carers has been identified in reducing carer burden, facilitating greater rewards and social closeness, and reducing difficulty of providing care for people with ALS using AAC. 49,50 AAC has a critical role in enabling patient autonomy; however, challenges to accessing AAC are reported and are unacceptable. People with ALS report that residing in a rural location, the logistics of navigating funding support for AAC, and the knowledge base of their health care professionals all impacted AAC access and obtaining a communication device in a timely manner.…”

Efficacy of different interaction devices using non-immersive virtual tasks in individuals with Amyotrophic Lateral Sclerosis: a cross-sectional randomized trial

“…This study suggests that for the first time a touchscreen system could help to improve performance in individuals with ALS, in addition to the potential for using technologies to improve functionality in this group. It is important to emphasize that a game was used to test performance and that we anticipate transfer to other tasks, but this work needs replicating with other technological devices including communication and socialization systems which have been found to promote self- determination, increase patients’ quality of life and reduce caregiver burden [46]. Providing the best device for an individual to perform practical tasks is extremely important, considering health service resources and the impact on participation in meaningful activities of this condition.…”

Nurses’ experiences of providing nonpharmacological pain management in palliative care: A qualitative study

“…This finding aligns with the social model of health where one's health is influenced by a wide range of individual, interpersonal, organisational, social, environmental, political and economic factors (Yuill, Crinson, & Duncan, 2010) and the results of other studies on nonpharmacological pain management interventions. The studies by Butow and Sharpe (2013) and Linse, Aust, Joos, and Hermann (2018) revealed that good communication, as well as warm and friendly relationships between healthcare providers and patients, improved health outcomes such as pain management.…”