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!
Food is also intimately connected with health. In fact, your loved one may have conditions that require special diets. Not following those diets may feel scary.
Nutritional rules change quite a bit when a person is in the advanced stages of a serious condition.
Below are some thoughts to help you understand more about food and serious illness.
Advanced illness and special diets
Specialized diets are known to have a very positive impact on serious conditions such as diabetes and heart disease.
Sometimes the difference shows up in daily life. A well-managed diet for a diabetic helps him or her feel much better. Low- or no-salt diets reduce swelling and remove the pain or discomfort of edema for someone with heart disease.
Sometimes the benefits are more invisible or long-term. A low fat diet reduces the chance of a heart attack. Important, but not immediately noticeable.
Certainly if your loved one is healthy and active, it is wise to stick to these special diets as much as possible. But in the case of an advanced illness, there are other factors to consider.
Quality of life is important
For instance, the American Dietetic Association supports more-relaxed diets for the frail elderly. After all, eating is not just for nutrition! Food has many social, cultural, and emotional meanings. They have a strong influence on how much we enjoy life.
Eating foods for comfort may be more important for the frail elderly. For a person in the advanced stages of an illness, the joy from eating foods higher in fat may outweigh the benefits of a low fat diet.
What seems more important right now: Quality of life or the risks of going off a restricted diet?
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Nutritional needs at the end of life
It can be very upsetting when a seriously ill family member doesn’t eat. But not eating, or eating less, can be a very normal part of the disease process.
Reduced need for food
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 are all the body can do. In some situations, digesting and going to the bathroom can be painful. For instance, eating may prompt vomiting, diarrhea, or bloating.
Reduced need for water
Toward the end of a person’s life, even drinking water can make it difficult to breathe. The body simply can’t process the fluids well. The extra fluids add to a buildup of fluid in the lungs.
Food and fluids at the very end of life appear to cause more distress than going without.
What arises for you emotionally if you were to let your loved one eat as he or she wishes?
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Refusing to eat
With many terminal conditions, it is normal to lose one’s appetite. In fact, with diseases such as cancer, feeding a patient artificially through a tube may cause a tumor to grow even faster!
A natural part of the process
Loss of appetite is a natural part of the dying process. The effort required to eat, digest, and go to the bathroom simply becomes too much to handle. Forcing food does not help a dying patient “keep up their strength.”
The biology of not eating
If a person near the end of life chooses not to eat or drink, think of it as allowing nature to take its course. The person will probably die within 10 to 14 days.
Eating does not prevent dying
Eating or drinking will not keep a terminally ill person from dying. If he or she continues to take in fluids, the dying process simply will be prolonged by a few weeks. What is your loved one’s quality of life? Is he or she in pain? Would he or she enjoy a few more weeks in his or her current state?
Not like starving
Refusing food or water during a terminal illness 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. They even seem to experience a slight euphoria.
Lack of fluids may also help your loved one be more comfortable. It reduces symptoms such as nausea, vomiting, bloating, and diarrhea. It can also help decrease the amount of fluid buildup in the lungs. This can reduce the need for bothersome suctioning procedures. Parched or dry mouth is the only negative side effect of reducing fluids. Lip balm can be used for the lips. Ice chips or a wet wash cloth to suck on can help soothe the interior of the mouth.
If your loved one refuses to eat, how can you support them in that decision?
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Losing the desire to eat is a natural part of the dying process. Forcing food and fluids can, in fact, cause more discomfort than benefit. Artificial nutrition requires inserting a tube into the body, through the abdomen or through a vein. Fluids with proteins, sugars, and other nutrients can then be pumped into the body through the tube.
Pros and cons
The medical procedures necessary for tube feeding can be very distressing for a seriously ill patient. Consider a person with advanced dementia. They don’t understand why the tube is needed. They often fuss at the tube. It is irritating. Sometimes they need to have their arms tied to the bedrail to keep them from pulling out the tube. Tube feeding creates an increased opportunity for infection. It can also cause fluids to build up in the lungs, making it harder to breathe. As a rule, studies indicate that the health benefits of artificial nutrition in advanced illness do not outweigh the negatives.
The artificial feeding decision may be one of the more difficult choices a family has to make. This is especially true if your loved one is no longer able to communicate. You must weigh the pros and cons. Hopefully there is an advance directive. Or you have had conversations as a family. The more you understand your loved one’s values, the easier the decision will be. How does he or she define “quality of life.” What makes life worth living, from his or her point of view? Will your loved one be able to continue with those treasured relationships or activities?
Here are some thoughts to help with your decision:
Artificial feeding does not prevent dying
People who have lost the ability or will to eat are not going to recover from their disease because they are fed artificially. It may prolong how long they live. But it will not prevent them from dying. This is a hard concept for families to grasp.
“Won’t he starve to death?”
Is the person you care for asking for food or exhibiting signs of wanting to eat? If not, then the chances are that he or she is not hungry. Your loved one’s disease is simply far enough along that food is no longer a priority. In the natural course of events, he or she is likely to die soon.
Deciding against artificial feeding is not going to cause your loved one to die. That process is already in motion. He or she will pass as a result of the illness involved. The decision not to insert a tube simply lets nature take its course without the medical complications of tube feeding.
There is no evidence of suffering among people who do not receive artificial feeding. In fact, studies show that they seem to have less fluid buildup and so, less trouble breathing at the end. They appear to have a more peaceful death than those who do receive artificial nutrition.
Postponing the decision
Once a family decides to start tube feeding, it automatically sets up the second question, “When should we stop?” Before starting this intervention, you might ask:
- What is the benefit?
Now? In the long term?
- What are the risks and discomforts?
Given your loved one’s condition, which of the disadvantages are likely?
- Will they ever be able to resume eating?
If so, and if it is a stopgap to get past a particular health challenge, it could be worth it.
- How much time are we buying?
If there’s a reason that is important to the patient or family, then it might be worth doing. For instance, it might give faraway relatives a chance to come and say good-bye.
In situations like this, there is no right or wrong answer. It’s a matter of personal values. Knowing your relative as you do, would he or she want to continue on under these circumstances? Will this intervention allow for a quality of life he or she would welcome?
What would your loved one want?
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