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Updated: Sep 26, 2026

A Protocol for Comprehensive Assessment of Bulbar Dysfunction in Amyotrophic Lateral Sclerosis (ALS)
Published on: February 21, 2011
A Qualitative Study of Team-Based Serious Illness Communication in ALS
Jaclyn Shameklis1, Alexis Drutchas2, Tamra Keeney3
1Harvard Medical School, Massachusetts General Hospital, Boston, MA, USA.
Context:
Amyotrophic lateral sclerosis (ALS) is a terminal neurodegenerative disease with an illness trajectory requiring repeated, high-stakes decisions and ongoing serious illness communication (SIC). While multidisciplinary team care is best practice in ALS, how interprofessional teams operationalize SIC, and how team culture shapes this work, remain poorly understood.
Objective:
To examine how team culture influences SIC delivery within an interprofessional ALS clinic.
Methods:
We conducted a qualitative study using semi-structured interviews and a focus group with interprofessional clinicians from a multidisciplinary ALS clinic at an academic medical center. Data explored clinicians' perceptions of interprofessional roles, team culture, facilitators, and barriers related to SIC. Transcripts were analyzed using thematic analysis with a combined deductive-inductive approach.
Results:
Analysis identified interpersonal facilitators, systems-level facilitators, and structural barriers shaping team-based SIC. Clinicians described shared responsibility for SIC, with conversations unfolding cumulatively over time across roles and clinical encounters. Interpersonal facilitators included mutual respect, psychological safety, role flexibility, and a shared commitment to reducing patient harm. Systems-level facilitators included frequent multimodal communication, structured documentation, leadership support, and use of adverse outcomes as opportunities for practice improvement. Structural barriers included time constraints, care transitions, regulatory limitations, and variability in comfort with SIC language.
Conclusions:
In this multidisciplinary ALS clinic, strong team culture enabled SIC to function as a longitudinal, interprofessional process rather than a single clinician-led event. Findings highlight the importance of psychological safety, teamwork, and supportive systems in delivering high-quality SIC and inform future clinical practice, training, and research.
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