What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

Abstract

BackgroundPatients with amyotrophic lateral sclerosis (ALS) are required to make decisions concerning quality of life and symptom management over the course of their disease. Clinicians perceive that patients’ ability to engage in timely decision-making is extremely challenging. However, we lack patient perspectives on this issue. This study aimed to explore patient experiences of ALS, and to identify factors influencing their decision-making in the specialized multidisciplinary care of ALS.MethodsAn exploratory study was conducted. Fourteen patients from two specialized ALS multidisciplinary clinics participated in semistructured interviews that were audio recorded and transcribed. Data were analyzed for emergent themes.ResultsDecision-making was influenced by three levels of factors, ie, structural, interactional, and personal. The structural factor was the decision-making environment of specialized multidisciplinary ALS clinics, which supported decision-making by providing patients with disease-specific information and specialized care planning. Interactional factors were the patient experiences of ALS, including patients’ reaction to the diagnosis, response to deterioration, and engagement with the multidisciplinary ALS team. Personal factors were patients’ personal philosophies, including their outlook on life, perceptions of control, and planning for the future. Patient approaches to decision-making reflected a focus on the present, rather than anticipating future progression of the disease and potential care needs.ConclusionDecision-making for symptom management and quality of life in ALS care is enhanced when the patient’s personal philosophy is supported by collaborative relationships between the patient and the multidisciplinary ALS team. Patients valued the support provided by the multidisciplinary team; however, their focus on living in the present diverged from the efforts of health professionals to prepare patients and their carers for the future. The challenge facing health professionals is how best to engage each patient in decision-making for their future needs, to bridge this gap.

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

“…As elsewhere [31], the relationship between pwALS and their HCPs was important in decision-making, and the support, or lack thereof, offered by HCPs had a direct impact on whether or not an intervention was accepted. There was a clear discrepancy between pwALS whose priorities were more focused on their current situation, as commented on elsewhere [31], and HCPs' 'best practice' suggestions of interventions to counter future difficulties related to the progressive nature of the disease. This 'worst-case' decision-making context [31] was experienced by some pwALS as pressure, which added to their distress.…”

“…There was a clear discrepancy between pwALS whose priorities were more focused on their current situation, as commented on elsewhere [31], and HCPs' 'best practice' suggestions of interventions to counter future difficulties related to the progressive nature of the disease. This 'worst-case' decision-making context [31] was experienced by some pwALS as pressure, which added to their distress. It is possible that during the course of this study such pressure may have increased due to the publication of UK guidelines regarding NIV provision [14], which may have resulted in an increase in the number of pwALS being offered NIV.…”

“…Few qualitative studies have examined decision-making in ALS [29][30][31]. Research has elicited possible influences (including input from family and friends; religious and moral convictions and life sustenance [29]) and has identified themes such as the meaning of the intervention, the importance of context and values, the effect of fear, the need for information, and adaptation to or acceptance of the intervention [30].…”

“…Research has elicited possible influences (including input from family and friends; religious and moral convictions and life sustenance [29]) and has identified themes such as the meaning of the intervention, the importance of context and values, the effect of fear, the need for information, and adaptation to or acceptance of the intervention [30]. Other influential factors were determined to be structural, interactional and personal [31]. It has been concluded [31] that decision-making is strengthened when patients experience co-operative relationships with healthcare professionals (HCPs) which support their personal beliefs.…”

“…It has been concluded [31] that decision-making is strengthened when patients experience co-operative relationships with healthcare professionals (HCPs) which support their personal beliefs. However, the findings are limited due to small sample sizes [29] and research has not specifically focused on gastrostomy and NIV [31,32].…”