What influences patient-centred decision-making in motor neurone disease? A study of stakeholder perspectives

Motor neurone disease (MND), also known as amyotrophic lateral sclerosis, presents many challenges to patient and carer engagement in decision-making. A progressive and terminal multisystem disorder without a cure, MND care focuses on symptom management and quality of life, as patients and families attempt to come to terms with the diagnosis. In addition to physical deterioration, the cognitive, communication and behavioural abilities of many patients are affected. Care is delivered in specialised multidisciplinary clinic settings, creating decision-rich environments in which to test normative models of patient-centric decision-making. As patients continually face care decisions, few options are available to slow disease progression or extend survival time. Family carers are extensively involved in patient care, yet the decision-making relationships between MND health professionals, patients and their carers are undefined. Models of decision-making used in cancer and chronic disease care have limited applicability to MND care. Patients use a cyclic process of adaptation to their rapidly changing needs. The available treatment choices are often ethically and culturally complex, and may be time-constrained. While patient choices are well documented, little is known about the underlying factors influencing their decisions. This study addresses two research questions. The first asks: what are the influences on patient decision-making in MND multidisciplinary care? The second question is: how is patient-centred decision-making is delivered in MND multidisciplinary care? The thesis contributes insight into the underlying aspects of decision-making, and their implications for delivering patient-centred, collaborative and evidence-based care. Qualitative methods were used to examine factors influencing patient-centred decision-making. Fifty-four respondents from two specialised MND multidisciplinary clinics participated in semi-structured interviews. These were 32 health professionals, 14 patients and eight carers. The views of each group were analysed separately, and then combined to provide a comprehensive picture of MND patient-centred decision-making. Thematic analysis revealed broad agreement between the groups on key factors influencing patient-centred decision-making. These were: the decision-making process; patient-centred focus; timing and planning; information sources; engagement with specialised ALS services; and access to non-specialised services. Specialised MND multidisciplinary clinics offered an optimal setting for decision-making. The roles and expectations of stakeholders influenced the decision-making process, while psychosocial factors and continually changing symptoms impacted on patients capacity to participate. Issues of timing of evidence-based care delivery and the role of carers were contentious. Patient-centred decision-making is a complex and cyclical process, with health professionals, patients and carers collaborating to form a decision-making triad. A four-stage triadic model, embedded in the specialised MND multidisciplinary clinic environment, was derived from the data. The first stage, Patient Engagement , identifies the participants and establishes their values, preferences and expectations. In stage two, Option Information , information and guidelines on the available management options are determined, including the optimal timing for implementation of each choice. During the third stage, Deliberation , patients weigh up the risks and benefits, and decide between proceeding with an option, deferring their decision, or choosing to do nothing. The final stage, Implementation , results once an option is chosen. The model captures the complexities of MND patient-centred decision-making and offers a framework for health professionals, researchers and policy makers in this challenging environment.