Rationale

Motor neurone disease (MND) is a neurodegenerative disease presenting with progressive weakness of voluntary muscles. For any condition, person‐centred health care relies on the sharing of information and a mutual understanding of the person’s needs and preferences. Decision making in MND becomes more complex as there is no cure and a high prevalence of co‐morbid communication and/or cognitive difficulties.

Objective

To identify the reported impact of communication and/or cognitive impairment on patient and carer involvement in health care decision making in MND.

Methods

A review and synthesis of studies addressing issues of communication impairment and/or cognitive impairment in relation to decision making focussed on MND was conducted. Articles were excluded if they were reviews, case studies, conference papers, or commentaries. To be included studies needed to address issues of communication impairment or cognitive impairment specifically in relation to decision making. Relevant data were extracted verbatim and subjected to content analysis to support the narrative summary.

Results

Seventy‐six articles were identified, and 35 articles screened. Six articles met inclusion criteria each describing examples of decision making in MND. There was limited data related to communication and/or cognitive impairment, and the impact these impairments may have on decision making despite recognition that many people with MND may lose verbal communication or develop subtle cognitive impairments. The literature is primarily from the perspective of others.

Conclusion

This review highlights that the current body of literature exploring decision making within the MND population presents us with extremely limited insights into the impact of communication and/or cognitive impairments on health care decision making. Extant literature focuses on interventions (namely, ventilation and gastrostomy), the broad process of decision making, or cognitive assessment of decision‐making ability. Whilst most studies acknowledge that deficits in communication or cognition impact the decision‐making process, this issue is not the focus of any study.

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