Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

Abstract

word count: 174 words 2 ABSTRACTThe objective was to identify factors associated with decisions made by patients with Amyotrophic Lateral Sclerosis (ALS) to accept or decline non-invasive ventilation (NIV) and/or gastrostomy in a prospective population-based study.Twenty-one people with ALS, recruited from the South-East ALS Register who made an intervention decision during the study timeframe underwent a face-to-face in-depth interview, with or without their informal caregiver present.Sixteen had accepted an intervention (11 accepted gastrostomy, four accepted NIV and one accepted both interventions). Five patients had declined gastrostomy. Thematic analysis revealed three main themes: i) patientcentric factors (including perceptions of control, acceptance and need, and aspects of fear); ii) external factors (including roles played by healthcare professionals, family, and information provision); and iii) the concept of time (including living in the moment and the notion of 'right thing, right time'). Many aspects of these factors were interrelated. Decision-making processes for the patients were found to be complex and multifaceted and reinforce arguments for individualised (rather than 'algorithm-based') approaches to facilitating decision-making by people with ALS who require palliative interventions.3

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

“…Timeliness of decision making is frequently raised in the broader MND literature. A discord is evident between people with MND and health care professionals or between people with MND and their family carers, with health care professionals and family carers often advocating for early or pre‐emptive decisions whilst people with MND, either because of denial or wishing of focus on the present, choosing to postpone decisions . The importance of early decision making is often justified due to the inevitable deterioration in speech function and possible development of cognitive deficits .…”

“…Although there is a significant and growing body of literature on decision making within the MND population, the impact of communication and/or cognitive impairments does not emerge with any clarity. Instead, the broader extant literature focuses on particular interventions (namely, ventilation and gastrostomy) [33][34][35][36][37][38][39] , the broad process of decision making (from the perspective of the patient, carer, or health care professional) 10,12,13,32,[40][41][42] , or cognitive assessment of decision-making ability. 43,44 However, this information is rarely extrapolated to consider patients' personal decision making.…”

“…A discord is evident between people with MND and health care professionals or between people with MND and their family carers, with health care professionals and family carers often advocating for early or pre-emptive decisions whilst people with MND, either because of denial or wishing of focus on the present, choosing to postpone decisions. 10,36,46 The importance of early decision making is often justified due to the inevitable deterioration in speech function and possible development of cognitive deficits. 20,29 Early discussions with patients and carers are recommended in international clinical guidelines for MND, in order to establish advance care plans or because timing is crucial to some intervention decisions, such as gastrostomy, which has a defined window of opportunity.…”

When is an invasive palliative intervention in an acute internal medical patient worth it? A structured palliative approach

“…Greenaway et al [11] investigated patients suffering from amyotrophic lateral sclerosis (ALS) on their decisions to accept or decline interventions like a gastrostomy or noninvasive interventions. They found three main topics: patient-centric factors, external factors, and the patients' concept of time, where many aspects were related.…”

Health care professionals’ views on psychological factors affecting nutritional behaviour in people with motor neuron disease: A thematic analysis

“…Despite the clinical importance of nutrition in MND, current guidelines and previous research on this topic are mainly focused on issues around enteral feeding and gastrostomy insertion (e.g., decision-making processes, timing of insertion, and impact on quality of life) rather than earlier stages of nutritional management (Andersen et al, 2012;Greenaway et al, 2015;Martin et al, 2016;Stavroulakis et al, 2014. There is little evidence to guide early nutritional management in MND, with no qualitative investigations so far focusing on the perspectives of HCPs.…”