Living with Serious Illness

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Living with Serious Illness
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Nutrition and eating
"Mama had the worst time not forcing Daddy to eat. It took all she had in her to accept that the best way to love him was to let him eat when he felt like it. If he didn’t want to eat, then respecting his wishes was loving him too."


• Nutritional needs at the end of life
• Special diets and serious illness
• Refusing to eat
• Choosing to start or discontinue artificial feeding



Nutritional needs at the end of life
Sharing food is one way we nurture and care for those we love. When a seriously ill family member doesn’t eat, it can be very distressing. Depending on the disease, however, refusing food can be a very normal part of the process. Sometimes forcing someone to eat can make things worse. If the person you care for is near the end of life, his or her body does not have enough strength to handle digestion, breathing, thinking, and fighting the disease all at once. Under some circumstances, eating, digesting, and eliminating food can be painful or cause distressing symptoms such as vomiting, diarrhea, and bloating. Even the simple intake of fluids can make it difficult to breathe because of a buildup of secretions in the lungs. As contrary as it might seem, at the very end of life food and fluids may cause more distress than going without. (Return to list)
Special diets and serious illness
Seniors frequently have chronic conditions such as diabetes or heart disease that are known to respond well to specialized diets. Certainly if an elder is healthy and active, it is wise to stick to these regimens as much as possible. But in the case of life threatening illness, there are other factors to consider.
The American Dietetic Association has determined that quality of life can be just as important to the frail elderly person as is nutrition. Eating is not just a biological process. Food has many social, cultural, and psychological meanings as well, and these factors have a strong influence on our enjoyment of life.
As for daily living, dieticians have determined that a restrictive diet for frail elders may not be all that helpful. If medicines can compensate for a change in eating habits, dieticians now encourage the seriously ill to add "comfort foods" to their diets. The goal of healthy eating is to affect overall health. If restrictive diets—for instance, lack of salt—are altering a frail patient’s ability to enjoy life, then the dietary regimen is not meeting its goal of overall health and well being.
The take-home message? What individuals with life threatening illness eat is generally not as important as how much they enjoy the experience of eating. (Return to list)

Refusing to eat
With terminal diseases such as cancer, it is natural to lose one’s appetite. In fact, feeding a patient artificially (through a tube, for example) has been shown to help a tumor grow even faster! Not eating may be one of the body’s natural defense mechanisms. Forcing food is not likely to help dying patients "keep up their strength." Near the end of life the effort required to eat, digest, and eliminate simply becomes too much to handle. Loss of appetite is a natural part of the dying process. You will be doing the person you care for a favor to honor his or her wishes regarding food.
There is some controversy about the rights of a person to refuse to eat or take in fluids just as there is controversy about the rights of an individual to refuse medical treatment. If an individual near the end of life chooses not to eat or not to drink water and nature is allowed to take its course, that person will probably die within 10 to 14 days. If he or she continues to take in fluids, the dying process may be prolonged by several weeks.
Refusing food or water during terminal illness is not like starvation. It does not cause a painful death. Quite the contrary; after a day with no food or water, the body produces a natural painkiller. The patient loses any sensation of hunger or thirst and even seems to experience slight euphoria. Lack of fluids may also help the patient be more comfortable because it reduces symptoms such as nausea, vomiting, bloating, and diarrhea. It can also help decrease the amount of fluid buildup in the lungs, which can reduce the need for bothersome suctioning procedures. The only discomfort identified is a parched or dry mouth that often happens with dehydration. Lip balm for the lips and ice chips or a mouth swab dipped in water can do much to relieve the symptoms of dry mouth. (Return to list)

Choosing to start or discontinue artificial feeding
If a patient is no longer able to communicate preferences, the decision to start or stop artificial feeding may be one of the more difficult decisions a family has to make. In the absence of an advanced directive, you must follow your own wisdom and your own understanding of your loved one’s desires regarding quality of life. As mentioned in the previous paragraphs, losing the desire to eat is a natural part of the dying process. Forcing food and fluids on the patient can in fact cause more discomfort in his or her final days.
It can be disconcerting to decide to withhold food or fluids. Despite evidence that this choice may well be the most merciful one, many people find it difficult to think that they may be starving their loved one to death. Each family must come to terms with its own understanding of its loved one’s wishes and its own version of compassion. Whatever you decide, it is important to remember that artificial feeding may postpone the moment of death by days or weeks, but it will not keep a terminally ill person from dying. (Return to list)


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This website was created by volunteers from Partners to Improve End of Life Care, a community coalition dedicated to improving end of life care through education, advocacy and support.