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    • Cindy Stirk
      Participant
      Post count: 12

      This would be the most difficult decision for me in palliative care
      As Mauriche wrote it is a natural instinct to nurture a person, and especially a child.
      I think I would struggle to explain to the parents/family/guardian that the time has come to stop any feeding.
      But hopefully when that time arises, I will be able to explain why it must be stopped.

    • Mauriche Van der Merwe
      Participant
      Post count: 6

      I think walking the parents/caregivers or family through the process might ease the blow a bit. It did for us. You basically have to rewire their parental brain into doing the opposite of what they need to do.

    • Tarryn Bell
      Participant
      Post count: 8

      Withholding feeds during end-of-life has definitely been the hardest aspect for our carers at Butterfly Home as feeding a child and being “fat” is a sign of caring and good health in this rural Zulu community. Some of the carers even voiced that they felt that we were abusing the children when feeds were stopped during the last hours of life. With more training and cases where children became bloated and fluid-overloaded during their final days we could practically explain how the body loses its ability to manage/absorb feeds and that it actually causes discomfort towards the end. It is still a challenging subject but we now follow each child’s lead to let us know when they are ready to stop feeding.

    • Sue Boucher
      Keymaster
      Post count: 21

      As Tarryn says, it is so important to explain to parents and carers how feeding and hydrating a dying child actually causes them unnecessary distress, but as Mauriche says, it takes a ‘rewiring’ of the parental brain to follow through with withholding food and liquids. An emotionally difficult decision for everyone involved in the care of a child.

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