Your child’s dietician can review nutritional needs. Complex care and palliative care clinicians can help guide decisions around diminishing nutritional needs.
Diminishing Nutritional Needs
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The metabolism in children with SNI gradually slows as their underlying condition progresses and other changes affect their calorie needs. Their appetite decreases as they no longer require the amount of nutrients or calories that are converted to energy in a healthy individual. Because the natural inclination is to force food and hydration, it is important to know that as illness progresses, the body is becoming unable to process nutrition, and the child is not experiencing hunger and thirst as they did before.
During decline the body expends less energy, with fewer calories and fluid needed. The amount needed can be half or less of what your child was receiving. Oral eating often naturally declines during this phase. As end of life nears the ability to eat orally might come and go. It might stop for several days, leading you and the medical team to prepare for the possibility that your child is nearing the end of life, and then feeding may pick up again.
Problems can develop when the same amount of nutrition given by a feeding tube or fluid given intravenously are continued during decline. As end of life nears there can be a change in motility, the ability of the intestines to move content forward. Your child’s belly may appear distended or swollen. This will improve when feeds are held. Edema (swelling) can also occur as fluid in the blood vessels leaks into other tissue spaces in the body. This can be noted as hands, feet, and eyelids become puffy from fluid in the skin (peripheral edema). There may be increased congestion as fluid leaks into the lungs. These changes can result in fluid in the lungs (pulmonary edema) and vomiting.
Your child may exhibit other signs of pain or discomfort as fewer calories are needed. Changes in the nervous system can lower how much distention of the stomach or intestines is needed to cause a pain signal. Nutritional feeds or fluids may trigger pain symptoms. The medical team may recommend a decrease in feeds if your child is exhibiting unexplained irritability, edema, distended abdomen, or new or worsening vomiting. When feeds are decreased or stopped because of persistent problems, you may see your child improve, possibly more than expected. This can mean the goal of comfort has been achieved.
Decisions about managing nutrition and hydration are loaded with all of the emotional issues that come from our practice and beliefs that feeding is one of the ways in which we show love and care for our children. It can feel very unnatural to decrease, or stop, food and drink. You may worry that your child will suffer from dehydration, or starve. As a person’s illness progresses and especially as they approach the end of life, changes in the body prevent this suffering from occurring. The decision to withdraw food may feel like acknowledging that your child is nearing the end of their life, and that may be sad or frightening. This is an important time to ask for, and receive, support. The medical team or palliative care team can determine what is occurring medically and help you process your feelings.
