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

Abstract

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.

Developing a web-based patient decision aid for gastrostomy in motor neuron disease: a study protocol

“…Interviews will be audio recorded and transcribed verbatim. It is recognised that a significant proportion of patient participants will have communication difficulties 29. To minimise the burden of the interviews for patients, they will be sent the interview guide ahead of the interview, to allow them to begin to construct their answers.…”

Interactions between persons—Knowledge, decision making, and the co‐production of practice

“…Arguably some areas of practice provide far more serious challenges to implementing person-centred care and SDM than others. Camille Paynter et al 73 state that the methods of SDM include "eliciting and acknowledging patients' preferences for participation, patient choices regarding how decision-making processes will proceed, and respect and adherence of patient choices by their clinicians." They note that decision making becomes far more complex when there are "no curative treatment options" combined with "a high prevalence of communication difficulties and a lesser prevalence of cognitive difficulties within a context of a rapidly progressive condition," as seen in motor neurone disease (MND).…”

“…Arguably some areas of practice provide far more serious challenges to implementing person‐centred care and SDM than others. Camille Paynter et al state that the methods of SDM include “eliciting and acknowledging patients' preferences for participation, patient choices regarding how decision‐making processes will proceed, and respect and adherence of patient choices by their clinicians.” They note that decision making becomes far more complex when there are “no curative treatment options” combined with “a high prevalence of communication difficulties and a lesser prevalence of cognitive difficulties within a context of a rapidly progressive condition,” as seen in motor neurone disease (MND). Their extensive review of the literature regarding decision making within the MND population reveals that, while “most studies acknowledge that deficits in communication or cognition impact the decision‐making process,” current insights into the impact of communication and/or cognitive impairments on health care decision making are extremely limited.…”

“…It includes papers on the nature of reasoning and evidence, the on‐going problems of how to “integrate” different forms of scientific knowledge with each other, and with broader, humanistic understandings of reasoning and judgement, patient and community perspectives . Discussions of the epistemological contribution of patient perspectives to the nature of care, and the crucial and still under‐developed role of phenomenology in medical epistemology, are followed by a broad range of papers focussing on SDM, analysing its proper meaning, its role in policy, methods for realizing it and its limitations in real‐world contexts …”

The impact of communication on healthcare involvement for people living with motor neurone disease and their carers: A longitudinal qualitative study

“…Social cognitive deficits such as difficulties recognizing and processing emotions and social cues are reported but can be difficult to recognize in a clinical context (Taylor et al., 2013). A recent review highlighted that the impact of communication and cognitive impairment on personal healthcare decision‐making in MND was not well described in the extant literature (Paynter et al., 2019). A total of 76 articles on decision‐making in MND were identified but only six addressed the issue of cognitive or communication impairments in relation to personal decision‐making (Paynter et al., 2019).…”