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Discontinuing feeds at the end of life is the decision I am faced with most regularly in my workplace: As a speech therapist, I am often involved in assessment and management of feeding, in particular in children with cerebral palsy. I find it difficult, especially when the main reason for admission is aspiration pneumonia or severe malnutrition secondary to severe dysphagia. Severe dysphagia is more common in children with cerebral palsy who have spastic quadriplegia. In our context, we have limited access to PEG feeding options as in the instance of severe dysphagia, so when positional and feeding techniques are limited, it makes it difficult to ensure optimal feeding. When I come across these children admitted in the hospital, aside from determining whether to continue with NGT feeds or IV fluids, if they recover from the acute admission, it becomes difficult to determine whether to continue with these feeding plans during the duration of the hospital stay and beyond. I get caught up trying to decide what is ‘rehabilitative’ and what it ‘life prolonging’ in these instances. I am coming to see though, that aside from discussing with the my clinical team, having an open and honest discussion with the child’s family would be a good starting point in making decisions on this matter.
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This must put a lot of strain on you. I think that’s a really important point about having a conversation with the patients family as the starting point for making these decisions. You do incredible work.
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Thank you Sarah <3 I appreciate this platform where our difficult experiences are heard.
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