Abstract
This study aims to discuss Speech-language pathology (SLP) therapy intervention in dysphagia with a focus on palliative care and quality of life. It is a case study conducted with four participants with amyotrophic lateral sclerosis undergoing SLP therapy outpatient follow-up. The Swallowing Quality of Life Questionnaire (SWAL-QOL) and a structured interview were applied to the participants, who also underwent Videofluoroscopic Swallowing Study (VFSS). Participants were classified according to the Functional Oral Intake Scale (FOIS), the Amyotrophic Lateral Sclerosis Severity Scale, translated and culturally adapted to Brazilian Portuguese (ALSSS), and the Dysphagia Outcome Severity Scale (DOSS). Four patients showed interest in maintaining oral food intake, even if minimal, in the event of tube feeding. Regarding severity of dysphagia, observed in the SVF, the participants presented DOSS classification ranging from functional deglutition to mild-to-moderate dysphagia. The impact on swallowing quality of life was between discrete and severe. Not all participants presented correlation between severity of dysphagia and SWAL-QOL level of impairment, with impact on the quality of life observed even in cases of mild dysphagia severity. Participants reported that they would feel uncomfortable in the event of exclusive tube feeding, and that the oral intake of food, even if minimal only for the pleasure of eating, would have a direct or indirect impact on their quality of life.
Highlights
The World Health Organization defines palliative care as that provided in order to promote the quality of life of individuals suffering from life-threatening diseases by preventing and alleviating physical, psychosocial and spiritual suffering[1]
Data collection was performed from medical charts, classification of swallowing functionality by the Functional Oral Intake Scale (FOIS)(6), the Amyotrophic Lateral Sclerosis Severity Scale translated version adapted to Brazilian Portuguese (ALSSS)(7), swallowing videofluoroscopy examination, classification of dysphagia severity from the Dysphagia Outcome and Severity Scale (DOSS)(8), dysphagia quality of life questionnaire (SWAL‐QOL)(9) and structured interview
The structured interviews were conducted by the researcher and consisted of open questions and multiple choices, namely: What does food represent for you? (Response options: maintenance of the body, socialization, pleasure or describe another); What is your opinion when you cannot eat some kind of food because you have difficulty swallowing? (Response options: acceptable, unpleasant or unacceptable); Would you like to eat even if mouth feeding is not recommended? (Free response with later guidance was used to describe the flavor, temperature, frequency of food supply and whether they would like something specific)
Summary
The World Health Organization defines palliative care as that provided in order to promote the quality of life of individuals suffering from life-threatening diseases by preventing and alleviating physical, psychosocial and spiritual suffering[1]. Palliative care employs a way of caring for the process of illness or death without disrespect for the ethics of life or the unnecessary prolongation of suffering[2]. Amyotrophic lateral sclerosis (ALS) is a progressive disease characterized mainly by degeneration of the upper and lower motor neurons. As a result of a threat on life, individuals suffering from ALS should be cared for from the outset, that is, from the diagnosis of the disease, by a multidisciplinary team that aims to promote their quality of life. The relief of multidimensional suffering should be the primary focus of the care team
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