Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals

Abstract

BackgroundThe aim of this study was to explore clinician perspectives on patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis (ALS), in an attempt to identify factors influencing decision-making.MethodsThirty-two health professionals from two specialized multidisciplinary ALS clinics participated in individual and group interviews. Participants came from allied health, medical, and nursing backgrounds. Interviews were audio recorded, and the transcripts were analyzed thematically.ResultsRespondents identified barriers and facilitators to optimal timing and quality of decision-making. Barriers related to the patient and the health system. Patient barriers included difficulties accepting the diagnosis, information sources, and the patient-carer relationship. System barriers were timing of diagnosis and symptom management services, access to ALS-specific resources, and interprofessional communication. Facilitators were teamwork approaches, supported by effective communication and evidence-based information.ConclusionPatient-centered and collaborative decision-making is influenced by a range of factors that inhibit the delivery of optimal care. Decision-making relies on a fine balance between timing of information and service provision, and the readiness of patients to receive them. Health system restrictions impacted on optimal timing, and patients coming to terms with their condition. Clinicians valued proactive decision-making to prepare patients and families for inevitable change. The findings indicate disparity between patient choices and clinician perceptions of evidence, knowledge, and experience. To improve multidisciplinary ALS practice, and ultimately patient care, further work is required to bridge this gap in perspectives.

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

“…Patient survival times are improved [12], and clinic settings provide a supportive environment for decisionmaking between patients, families and health professionals [7,10,13]. Patients and carers value the expert information and care they receive [7,10], while clinicians view the clinic as the ideal setting to guide patients through difficult and complex decisions [13]. Patient autonomy is facilitated by the patient-centered service offered by specialized ALS multidisciplinary models of care [11].…”

“…Patients and families become the educators of their health professionals on the complexities of their care. Moreover, priority systems of busy health services are rarely in step with the rapidly changing needs of people with ALS [13]. Patients' autonomy over the way they live their life becomes compromised by the availability and timing of their care options.…”

“…Others prefer to rely on family and health professionals to make decisions on their behalf [10]. Experiences of grief, recurrent loss and poor adjustment to change potentially hinder patients' acceptance of welltimed, evidence-based care [13]. Tension arises between health professionals' respect for patient choices, and clinical goals of delivering highquality care [13].…”

“…Experiences of grief, recurrent loss and poor adjustment to change potentially hinder patients' acceptance of welltimed, evidence-based care [13]. Tension arises between health professionals' respect for patient choices, and clinical goals of delivering highquality care [13]. Patients' autonomy is at odds with their best interests should patients choose to disengage with services and risk compromising their health status.…”

“…Should carers act as gate keepers to protect patients from discomforting information and intrusion by health providers [10,13], patient engagement is likely to be constrained. The dynamic nature of ALS shapes patient participation in decision-making.…”