Complex decisions about tube feeding in advanced dementia : insights from a sample of South African speech-language therapists

Abstract

BACKGROUND : As advanced dementia progresses, individuals become increasingly dependent on health, social, and community care services, and feeding difficulties become common. Oropharyngeal dysphagia is prevalent in people with advanced dementia, and speech-language therapists (SLTs) may recommend tube feeding. However, a deeper understanding of SLTs’ practices, focused on dysphagia in advanced dementia, are needed. OBJECTIVE : To qualitatively describe insights and practices of a sample of South African SLTs, regarding feeding tube placement in people with advanced dementia. METHOD : Semi-structured interviews were conducted using an interview schedule containing nineteen open-ended questions. The study employed a qualitative design based on phenomenological principles. Eight SLTs, with a particular interest in working with advanced dementia, were recruited using purposive sampling. The data collected were analysed using inductive reflexive thematic analysis. RESULTS : Three main themes were identified: a) Factors influencing SLTs’ decisions for feeding tube placement in people with advanced dementia, b) Nature of clinical setting and SLTs’ decision making and c) SLTs’ considerations to improve the management of people with advanced dementia. Findings indicated that existing local palliative care guidelines were not employed by SLTs in decisions about tube feeding. Most participants did not recommend tube feeding during the end-of-life phase of advanced dementia. The perceived burden of care, experienced by healthcare professionals and families, influenced decisions about tube feeding. CONCLUSION : Decisions about feeding tube placement in advanced dementia is complex and require specialised teams. Caregiver involvement and promotion of patient autonomy is crucial. SLTs require support from local governing bodies for continued professional development and mentoring to improve ethical and evidence-based decision-making.