Supporting gastrostomy decision-making in motor neurone disease (MND): an Australian survey of healthcare professionals’ beliefs, practices, and needs

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Gastrostomy decision-making for people living with motor neurone disease (MND) is complex. While international studies report healthcare professionals’ (HCPs) beliefs and practices in this area, little is known about the Australian context. To examine Australian HCPs’ beliefs, clinical practices, and support needs regarding gastrostomy decision-making in MND. A national cross-sectional online survey of Australian HCPs involved in gastrostomy discussions (n = 123) was conducted, exploring five domains: 1) initiating discussions and timing; 2) patient education; 3) multidisciplinary coordination; 4) guideline use; 5) and professional development needs. Descriptive statistics were applied. Most HCPs initiated discussions about gastrostomy (74%), commonly prompted by swallowing difficulty, weight loss, or patient request. Although 72% believed discussions should occur before clinical indications, only 40% reported doing so. Earlier placement was favored in the context of respiratory decline compared with swallowing impairment, and 56% considered gastrostomy to be performed too late. Almost 40% used no formal guidelines, and 74% wanted further professional development. Australian HCPs valued person-centered practice, but belief-practice gaps highlight opportunities to improve consistency, timing, and quality of gastrostomy decision-making support. Enhanced national guidelines, improved multidisciplinary communication, and targeted professional development may help reduce delays and better align practice with evidence-based recommendations. People living with motor neurone disease (MND) often have trouble swallowing. They may lose weight and find it hard to take medications. A feeding tube (gastrostomy) can help with food, fluids, and medication. However, deciding if and when to have a feeding tube can be difficult and emotional for people with MND and their families. Healthcare professionals play an important role in giving information and supporting these decisions. However, we do not know much about how healthcare professionals in Australia manage these discussions. In this study, we surveyed 123 Australian healthcare professionals from different fields who work with people with MND. We asked when they talk about feeding tubes, what information they give, how they work with other team members, what guidelines they use, and what training they need. Most healthcare professionals said they talk about feeding tubes when swallowing problems or weight loss begin, or when patients ask about it. Many said these conversations should happen earlier, but fewer said they actually do this. They often talked about nutrition and daily life with a feeding tube. They were less likely to talk about prognosis or the risks of waiting too long. Some healthcare professionals said communication within the care team can be difficult. Many do not use formal guidelines. Most said they would like more training, especially in decision-making and having difficult conversations. These results show ways to improve care in Australia. This includes clearer guidelines, better team communication, and more training for healthcare professionals.

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