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Informed or misinformed consent and use of modified texture diets in dysphagia

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journal contribution
posted on 2023-03-13, 09:01 authored by Shaun T. O' Keeffe, Paula Leslie, Tracy Lazenby‑Paterson, ARLENE MC CURTINARLENE MC CURTIN, Lindsey Collins, Aoife Murray, Alison SmithAlison Smith, Siofra Mulkerrin

Background Use of modifed texture diets—thickening of liquids and modifying the texture of foods—in the hope  of preventing aspiration, pneumonia and choking, has become central to the current management of dysphagia. The  efectiveness of this intervention has been questioned. We examine requirements for a valid informed consent pro‑ cess for this approach and whether the need for informed consent for this treatment is always understood or applied  by practitioners. Main text Valid informed consent requires provision of accurate and balanced information, and that agreement is  given freely by someone who knows they have a choice. Current evidence, including surveys of practitioners and  patients in diferent settings, suggests that practice in this area is often inadequate. This may be due to patients’  communication difculties but also poor communication—and no real attempt to obtain consent—by practitioners  before people are ‘put on’ modifed texture diets. Even where discussion occurs, recommendations may be infu‑ enced by professional misconceptions about the efcacy of this treatment, which in turn may poison the well for the  informed consent process. Patients cannot make appropriate decisions for themselves if the information provided is  fawed and unbalanced. The voluntariness of patients’ decisions is also questionable if they are told ‘you must’, when  ‘you might consider’ is more appropriate. Where the decision-making capacity of patients is in question, inappropriate  judgements and recommendations may be made by substitute decision makers and courts unless based on accurate  information. Conclusion Research is required to examine the informed consent processes in diferent settings, but there is  ample reason to suggest that current practice in this area is suboptimal. Staf need to refect on their current practice  regarding use of modifed texture diets with an awareness of the current evidence and through the ‘lens’ of informed  consent. Education is required for staf to clarify the importance of, and requirements for, valid informed consent and  for decision making that refects people’s preferences and values. 



BMC Medical Ethics 24, 7



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