Dysphagia progression in a MELAS syndrome case: a palliative care perspective

ABSTRACT

This article aims to describe a dysphagia progression and a choice of the feeding options in a case of MELAS syndrome, under the perspective of palliative care. It is a case in which a woman at the age of 26 years suffered the first symptoms of the disease and had the swallowing functionality progressively impacted. Speech-Language Therapy follow-up was performed at 6 months with the application of a swallowing safety assessment protocol, Functional Oral Intake Scale (FOIS) and swallowing management, with weekly and monthly outpatient returns. At six months of follow-up, the patient progressed from moderate dysphagia to moderate to severe dysphagia and ranged from levels 5 to 1 of FOIS. The patient maintained oral feeding with consistency restriction, dry swallowing maneuver, and control of volume for liquid intake until the end of the six months of follow-up, when gastrostomy was made. Oral feeding in more than one consistency but with compensations was reduced to exclusive non-oral feeding. We chose to maintain oral feeding until the gastrostomy was placed. Non-suggestion of nasoenteral tube was based on the patient’s desire and the possibility of oral feeding in at least one food consistency.

Keywords:
Palliative care; Dysphagia; Brain diseases; Stroke; Tube feeding; Mitochondrial diseases