Tube feeding

Throughout my career, I have worked with a number clients who testing (called a video swallow study) determined weren't safe to eat and/or drink food. Usually, we then recommend to the parents that they talk to the doctor about having the child set up with non-oral feeds (tube feeding). Sometimes the families agree, sometimes they insist on continuing with oral feeding even if tests show it isn't safe. It is generally accepted that the parents have the ultimate decision. As a speech therapist, it is then my job to work with the dietitian to see how the client can be the safest possible and be as close as possible to meeting nutritional needs. However, sometimes there is no type of food or drink that is thought to be safe. In previous jobs, we have then required parents to come in and feed the children while at school because the school staff would not take on that risk (these are extreme cases).

Now, people often wonder two things about the decision making process for non-oral feeding. One, why would a parent protest non-oral feeding methods if oral intake isn't safe or enough to meet nutritional needs? The answer is that feeding/eating is often the one "typical" thing that a child can do. If a child can't eat/drink, then they are perceived as even more disabled. There are a lot of emotions around that. On some level, I think it also means that the child is/could be sick and could die. That is scary. Additionally, eating is a very social occasion. People who don't eat orally miss out on a lot of social opportunities. Finally, it is often seen as a quality of life issue. People frequently enjoy eating and caregivers think that we are "taking that away" from the client if the doctors put in a tube for feeding (usually a surgical procedure into the stomach).

The second thing people often wonder is why parents are given the control over the issue, especially if the child has recurrent pneumonia caused by aspiration (food/drink entering the lungs) or is malnourished. If a child is malnourished or not safe to eat and the parents are refusing treatment, is this then medical neglect? That one I don't really know the answer to. I can see that side of the argument but at the same time I see the family's struggle with the acceptance of the level of difficulty the child is having.

Also, for some children, this is how the child always was so it is perceived that the professionals are creating the problem. It is really a difficult balancing act between trying to do what is best for the child and helping the parents decide what really is best. Just because a feeding tube can be inserted and extend the quantity of someone's life doesn't mean that it always should be. Their quality of life may decrease (especially if they are sick or really enjoyed eating). The child may be medically fragile and a surgical placement of a tube may be too risky.