Promoting Shared Decision-Making in Rehabilitation: Development of a Framework for Situations When Patients with Dysphagia Refuse Diet Modification Recommended by the Treating Team

Abstract

To address the risks of aspiration pneumonia, patients with dysphagia may be prescribed a modified diet. The goal of diet modification is to decrease the risk of patients aspirating food due to their diminished swallowing reflex. Some patients may not accept diet modification or may not adhere to the treatments identified by the interdisciplinary team. Such scenarios may result in important moral uncertainty and concern for clinicians. As a result of several ethics consultations related to this issue, a working group of the Clinical Ethics Committee at the Jewish Rehabilitation Hospital in Laval, Quebec, Canada, developed a framework for responding to situations when patients do not adhere to recommended diet modification. The goal of this tool is to facilitate discussion and collaboration between clinicians and patients, to clarify assumed versus real risk, and to promote shared decision-making in dysphagia care. In this article we examine the clinical context of diet modification for patients with dysphagia in rehabilitation hospitals, explore ethical aspects of this topic, present the clinical algorithm, and discuss our experience with developing and piloting this tool.