End of Life Nutrition
We are often asked, “What should we do? Our loved one is not eating” and our answer is almost always the same: “does your loved one WANT to eat?”
As our loved ones approach the very end of life, their quality of life, the relief from sometimes painful symptoms, and comfort care are of utmost importance. It is at this time that we need to carefully listen to our loved one to determine their major concern. If your loved one is not asking for food or drink, or if they are completely refusing food and drink, then mostly likely, they are NOT hungry or thirsty.
It is very difficult for us to understand and let go of the instinctive habits of feeding and comforting the ones we love. After all, we feed and nurture our young from the minute they are born. However, in most circumstances, it is us, the family and friends, who would be most comforted by seeing our loved ones eat or drink. Sometimes it is easier to accept this if we understand the process of nutrition at the end of life.
Terminally ill patients generally do not experience hunger, and those who do, need only small amounts of food to alleviate symptoms. At the end of life, the body is preparing for death and is beginning the natural process of shutting down. The body wants to save the energy that is normally spent on eating and drinking for other major bodily functions. In other words, it takes a lot of work to digest food and fluids and can be exhausting. When our loved ones quit eating and drinking, they are able to rest more comfortably because their bodies are not performing the usual digestive processes and they don’t have to be disturbed with changing and toileting.
It is important to know that dehydration and starvation are not painful at the end of life. In addition, withholding food and drink allows the underlying disease to be the cause of death and will result in a natural progression to a more comfortable death.
You should offer comfort foods and beverages to loved ones when they are requested. We do NOT recommend force feeding or forcing fluids. Remember, when our loved ones quit eating and drinking, it is usually their quiet way of saying, “it is time for me to rest.”
Kellie and Amy
Hospice of Huntington Dietitians
Food is so important to each of us for many different reasons. Many of us associate food with comfort, memories of childhood, and happiness. So, when our family member can no longer eat, we automatically have negative feelings. We may feel that our loved one is starving or experiencing hunger. It is important to know how our digestive process changes in life-limiting illness, so that we can help our patients, families, and caregivers make informed decisions.
We eat to provide our body with nutrients that supply energy and help keep us healthy. But, in life-limiting illness, nutritional requirements change as our body is in the process of shutting down. We need fewer calories, so our appetite and desire for food decreases. It is very important to remember that a person at the end of life does not get hungry or thirsty in the same way a healthy person does. The decrease in appetite and the loss of thirst are natural processes that allow the body to prepare itself for death. Forcing food and drink can cause uncomfortable symptoms such as bloating, nausea, vomiting, diarrhea, constipation, edema, and/or gastric reflux leading to aspiration.
It is important to allow the patient to determine what, how much, and how often he/she chooses to eat or drink. Never force food and fluids, our bodies will tell us what they need and when they need it.
Artificial Nutrition and Hydration
Nutrition support at the end of life does not reverse or cure a disease. It is important to explain this fact to our patients and their families. Many studies have concluded that the use of feeding tubes/parenteral nutrition in cancer patients have no clinical benefit. Actually, the use of artificial feeding can increase suffering in the terminally ill by increasing nausea, vomiting, bleeding, edema, pulmonary edema, incontinence and infections. The side effects are the same with artificial hydration. Water deprivation increases the body’s production of endogenous opiates that can actually reduce pain. Many studies show that when mouth moisturizing steps are taken (ice chips, lip balm, moistened swabs), uncomfortable dry mouth can be alleviated without the use of artificial hydration.
Our goal is to allow the patient to be the guide. It is important to have a discussion about the patient’s wishes early on in the diagnosis and treatment if possible. Stress to families the importance of having this discussion prior to the dying process. Open and honest communication among the patient, family, and healthcare team can help the patient make the best decision. If the dying process has begun and the patient’s wishes are unknown, the healthcare team should explain the risks and benefits associated with end of life nutrition to the family/caregiver, so they can make the most informed decision.
Sources: Today’s Dietitian “Nutrition Support at the End of Life: A Critical Decision”
Crossroads Hospice: “Nutrition and Hydration Tips”