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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.

PurposeFamily carers of patients with amyotrophic lateral sclerosis (ALS) are presumed to have frequent involvement in decision-making for symptom management and quality of life. To better understand and improve decision-making, we investigated the range and extent of carer participation in decision-making. By focusing on the perspectives of ALS support carers, the study aimed to explore carer participation in decision-making, to identify carer roles, and determine the facilitators and barriers to carer participation in decision-making for ALS multidisciplinary care.Participants and methodsAn exploratory, in-depth study was conducted with eight carers of ALS patients from two specialized ALS multidisciplinary clinics. Carers participated in semi-structured interviews that were audio recorded and transcribed then coded and analyzed for emergent themes.ResultsCarers made a significant contribution to ALS decision-making. Their roles were: promoting the patient voice, promoting patient health literacy, and providing emotional support and logistical assistance. Facilitators of carer participation in decision-making were perceived to be: health professional endorsement of patients’ decision-making style; access to credible information sources; evidence-based information from the ALS clinic, ALS support association, and health practitioners; supportive relationships with family and friends; spiritual faith; ease of contact with ALS services; and availability of physical and practical support for carers. Barriers to carer participation included: changes to patient communication and cognition; conflict between respect for patients’ independence and patients’ best interest; communication breakdown between patient, carer, and service providers; the confronting nature of disease information; credibility of Internet sites; carer coping strategies; lack of support for the carer; and the burden of care.ConclusionCarers enhance ALS patient-centered care through their participation in decision-making. They collaborate with patients and health professionals to form a decision-making triad within specialized multidisciplinary ALS clinical care. Nevertheless, health professional engagement with carers as collaborative partners is acknowledged to be a significant challenge.

Objectives: In this hypothesis-generating study, we observe, identify, and analyze how emergency clinicians seek to manage work pressure to maximize patient flow in an environment characterized by delayed patient admissions (access block) and emergency department (ED) crowding.Methods: An ethnographic approach was used, which involved direct observation of on-the-ground behaviors, when and where they happened. More than 1,600 hours over a 12-month period were spent observing approximately 4,500 interactions across approximately 260 emergency physicians and nurses, emergency clinicians, and clinicians from other hospital departments. The authors content analyzed and thematically analyzed more than 800 pages of field notes to identify indicators of and responses to pressure in the day-to-day ED work environment.Results: In response to the inability to control inflow, and the reactions of inpatient departments to whom patients might be transferred, emergency clinicians: reconciled urgency and acuity of conditions; negotiated and determined patients' admission-discharge status early in their trajectories; pursued predetermined but coevolving pathways in response to micro-and macroflow problems; and exercised flexibility to reduce work pressure by managing scarce time and space in the ED. Conclusions:To redress the linearity of most literature on patient flow, this study adopts a systems perspective and ethnographic methods to bring to light the dynamic role that individuals play, interacting with their work contexts, to maintain patient flow. The study provides an empirical foundation, uniquely discernible through qualitative research, about aspects of ED work that previously have been the subject only of discussion or commentary articles. This study provides empirical documentation of the moment-to-moment responses of emergency clinicians to work pressure brought about by factors outside much of their control, establishing the relationship between patient flow and work pressure. We conceptualize the ED as a dynamic system, combining socioprofessional influences to reduce and control work pressure in the ED. Interventions in education, practice, policy, and organizational performance evaluations will be supported by this systematic documentation of the complexity of emergency clinical work. Future research involves testing the five findings using systems dynamic modeling techniques.

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.