Evaluating Dysphagia Measures at End of Life: Implications for Quality-of-Life Assessment

Background: Dysphagia is a common and distressing symptom experienced by individuals nearing the end of life (EoL), often impacting quality of life (QOL) through reduced enjoyment of food, loss of social connection, and emotional distress. Despite its prevalence, there remains a lack of validated, patient-reported outcome measures tailored for use in this vulnerable population. Method: This review article explores the potential appropriateness of three widely used dysphagia tools—the MD Anderson Dysphagia Inventory (MDADI), Eating Assessment Tool (EAT-10), and Swallowing Quality of Life Questionnaire (SWAL-QOL)—for assessing symptom burden and QOL in EoL settings. A literature review was conducted to evaluate the psychometric properties, clinical utility, and ethical implications of using these measures with seriously ill adults. Results: Findings highlight that while the MDADI is well-established in oncology, it lacks validation in noncancer populations and may be too lengthy for EoL use. The EAT-10 is efficient and broadly applied across settings, but primarily captures dysphagia severity rather than QOL impact. The SWAL-QOL is the only tool with evidence of use in EoL populations and offers comprehensive QOL assessment, though its length may pose challenges for patients with limited time and declining health. Ethical considerations, including the need for caregiver assistance and communication accommodations, are discussed. Discussion: This review article emphasizes the importance of selecting dysphagia tools that balance sensitivity, feasibility, and patient burden. Future research should prioritize validating adapted tools for surrogate completion and use with communication impaired individuals, ensuring that the experiences of all patients with dysphagia, especially those near the EoL, are accurately and respectfully captured.