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.