Healthcare decision making in motor neurone disease (MND) focuses on symptom management and quality of life. Decision making may be affected by personal approach to receiving information, decision making style, and disease symptoms. This study explored decision making from the perspectives of people living with motor neurone disease (plwMND). The issues impacting engagement and involvement in healthcare decisions were investigated. Methods: Semi-structured interviews were conducted with 19 plwMND and 15 carers. Interview data was inductively analysed to identify and describe patterns and themes. Results: Data analysis identified six overarching themes: Dimensions of decision making; Window of opportunity for choice; Intrinsic influences on decision making; Extrinsic influences impacting decision making; Planning in uncertainty; and, Communication is core. Many participants did not identify a process of 'decision-making' except if considering early gastrostomy placement. Information provision requires a balance between ensuring patients are informed but not overwhelmed. Communication impairment impacts involvement. Healthcare professionals' communication style influences engagement in decision making. Conclusion: PlwMND perceive a lack of clinical decisions to make because disease symptoms and clinical phenotypes dictate necessary interventions. PlwMND describe communication impairment as a barrier to involvement in decision making and extra support is required to ensure they maintain engagement.
A lack of consensus exists among palliative medicine specialists regarding the definition and scope of palliative rehabilitation. Participants generally expressed a wish to offer enhanced rehabilitation interventions, however described resource and skill-set limitations as significant barriers. Further research is required to establish an evidence base for palliative rehabilitation, to support its acceptance and widespread integration within specialist inpatient palliative care.
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.
This article attempts to examine and explore the change management process that was undertaken by the community palliative care service at Calvary Health Care Bethlehem, Australia, to challenge the historical practice of prescribing 'emergency subcutaneous medications' for all patients admitted to the service. It discusses how, using a team approach, change management was effectively facilitated to ultimately enhance service provision and consumer satisfaction. Literature (both national and international) was examined to identify the use of emergency medications in the community palliative care setting. The historical practice of all community palliative care patients being prescribed this medication within the Victoria region of Australia was tested, and concerns and misconceptions of staff and referrers were challenged in regards to this practice. Through working parties, descriptive surveys and staff evaluations, the use of the term 'emergency medication' was changed to 'anticipatory medication' with clear criteria for usage. Change was undertaken slowly and with continued collaboration of staff to ensure effectiveness. Staff survey results identified that the majority were satisfied with the change, and they considered there to be no impact on the quality of care that their patients were receiving. The natural progression of the project, which resulted in positive quantitative and qualitative results, was the facilitation of an education package for carers to educate them on giving subcutaneous medications to the patient. By undertaking change that was slow and methodical with clear communication to all, the community palliative care service was able to embed the changes into everyday practice, and the use of anticipatory medications within the Calvary Health Care Bethlehem community palliative care service is now understood, acknowledged, and adhered to by all staff.
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