Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND): decision‐making about ‘ongoing change and adaptation’

Abstract

The 'ongoing change and adaptation' model is a framework that can guide practitioners to understand the decision-making processes of people living with amyotrophic lateral sclerosis/motor neurone disease. Such understanding will enhance caring and promote models of care that are person-centred. The model may also have relevance for people with other life limiting diseases and their care.

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

“…In contrast, pwALS felt that the HCPs who tended to view time as 'lacking' placed pressure on pwALS to have an intervention. In reality, the unpredictable nature of the disease course means that there may need to be a cyclical pattern of decision-making as symptoms change [43] and life-stage transitions may also determine the decisions likely to be made [32]. This finding may help HCPs to develop more patient-focused ways of supporting and advising pwALS.…”

“…There seems to be a pattern of cyclic revisiting as the situation for pwALS is one of change [43]. This study captured the decision-making process at the point at which a decision was made.…”

The complexity of care in amyotrophic lateral sclerosis

“…Living with ALS may involve 'abruption' and 'disruption' but it also involves coping with loss through finding new meaning in life and exerting control. This adaptive response is characterized by a cyclical decision making process that seeks to preserve a sense of self and well-being in the face of adversity (12).…”

Optimizing Patient Autonomy in Amyotrophic Lateral Sclerosis: Inclusive Decision-Making in Multidisciplinary Care

“…Yet these linear process models lack the complexity needed to support decision-making in multisystem and rapidly progressive conditions. ALS patients use a cyclical pattern of decision-making, as they react and adapt to ongoing change [15]. Many ALS patients avoid looking at the future and the decisions that lie ahead of them [7,16].…”

“…One approach is to strengthen ALS decision-making processes and partnerships. ALS multidisciplinary care presents an ideal context for decision-making models that reflect the changing needs of ALS patients; that is, cyclic patterns of adjustment as patients adapt to ongoing change [15]. Development of cyclic, rather than linear, patient-centered care models [19] could facilitate patients' movement through stages of complex decision processes, and enhance health professionals' understanding of the challenges that patients encounter.…”