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.

Plugging the patient evidence gap: what patients with swallowing disorders post‐stroke say about thickened liquids*

“…) resulting in known unfavourable patient outcomes (Kaizer et al . ). Specifically, non‐use or alteration of TL as prescribed may result in a number of adverse individual outcomes including dehydration resulting from reduced fluid intake, aspiration and aspiration pneumonia.…”

“…Individuals may be attempting to ease the treatment burden by not using TL as prescribed, by either making modifications to or terminating it. Treatment fidelity is an acknowledged issue for PWD using TL (Garcia et al 2005) and such problems with adherence have been described as a financial burden in healthcare (Vermeire et al 2001) resulting in known unfavourable patient outcomes (Kaizer et al 2012). Specifically, non-use or alteration of TL as prescribed may result in a number of adverse individual outcomes including dehydration resulting from reduced fluid intake, aspiration and aspiration pneumonia.…”

Update on the pathogenesis and management of pneumonia in the elderly-roles of aspiration pneumonia

“…Episodes of aspiration may worsen during pneumonia treatment due to bedridden-induced immobility and inflammation. Both swallowing rehabilitation and oral health care management should be initiated and continued in parallel with antibiotic treatment [36][37][38][39][40]. Oral care reduces fever and pneumonia incidence among elderly patients [41,42].…”

Dysphagia: implications for older people

“…Decisions around nasogastric or PEG feeding and withdrawal of feeding support are particularly fraught areas. 68,124 Different groups 167,168 have attempted to formulate algorithms for decision making when patients or family decline to follow recommended treatments. Detailed coverage of issues and potential solutions is not possible here.…”