Nutrition / Hydration / Food / Eating / Drinking

While pain is a common symptom at the end of life, it isn’t caused by lack of food or fluids.

People with a terminal illness don’t have a problem with "hunger pains." Commonly they lose their appetite, their sense of hunger, and all interest in food. This can result from nausea, physical discomfort from eating even small amounts of food, and the overall effect of the illness.

Lack of appetite and the resulting weight loss can have many different causes. They can include illness, medications, treatments, pain, constipation or bowel obstruction, sores in the mouth, and anxiety or depression. It’s important to try to find the cause before trying a treatment.

Poor appetite may be caused directly by a problem in the digestive system, or indirectly by a symptom of the underlying disease. For example, pain, nausea and shortness of breath are common symptoms that can reduce a person's ability to eat or interest in eating.

Health care providers assess a patient’s overall condition to try to determine why someone isn’t eating. They may select one medication or a combination of medications to try to address this. Some medications can stimulate appetite; others can help control symptoms that may be reducing appetite.

Homeopathic remedies may stimulate appetite. Some such remedies, especially herbal supplements, interact with medications and can cause health problems. It’s important to consult the patient’s health care team before using any homeopathic supplement or treatment, especially when the patient is taking prescription or over the counter medications.

Some people continue to eat and still lose weight. When someone is very ill, the body’s processes turn to fighting the illness and not to regular functions such as maintaining weight and strength. So the nutrients in food don’t lead to improved strength or survival time. In the final stages of a terminal illness people lose their appetite and their sense of hunger. Often there’s nausea and physical discomfort from even small amounts of food. At this stage there’s more value in easing the patient’s discomfort than in trying to overcome a loss of appetite.

It can be very difficult to make decisions about feeding when people can’t eat on their own. Tube feeding is not considered a basic part of care. Health care providers, ethicists and the courts consider it to be artificial nutrition and a medical treatment. This makes it comparable to other medical treatments such as dialysis or assisted breathing.

The questions to consider when making decisions about tube feeding are similar to those for decisions about other medical treatments.

• What does the patient want?
• What are the goals of the tube feeding?
• What are the potential risks and benefits of tube feeding?
• How does faith or culture bear on the decision?

What does the patient want?

This is the most important question, and it may seem obvious, but it’s not always asked. If communication isn’t possible, other cues may signal that someone doesn’t want to be tube fed. Some people repeatedly pull out the tube, which signals that the patient disapproves of the tube feeding.

If a person doesn’t have the capacity to decide, then other information is considered. The most helpful piece of information is a health care directive, if one exists. A directive is prepared by the person at an earlier stage of an illness, and outlines what’s to be done in case that person is no longer able to make decisions. Even if such a document does exist, it may be too vague to offer clear direction. For example, it’s hard to know where tube feeding fits within "heroic measures" or "life support." In this case, it helps to imagine this person before the stroke. What would he or she say about this situation: being tube fed, dependent on others, usually bedridden, perhaps unable to communicate? When families think of this, most commonly they answer without hesitation, that the person “wouldn't want anything to prolong life beyond the natural course of the illness." If that’s the case, then tube feeding should not be given. It’s not right to continue a treatment that’s known to be against a person's wishes. If they can imagine the person saying “I want everything done that is medically acceptable” then the family must consider it. The family isn’t making the decision, it’s simply conveying the patient’s wishes.

What are the goals of the tube feeding?

Any medical treatment has particular goals. If the goals are not achievable, then the treatment should not be done. The health care team can offer information to clarify possible outcomes.

As an example, these scenarios show how decisions about tube feeding may be approached:

• A person may recover some independence.
  Tube feeding may be given to support the person during initial recovery, when outcomes may be unknown. There will come a time when it’s possible to assess further if a certain level of recovery can be reached. If it’s no longer possible to achieve a desired level of recovery, then the patient may reevaluate the use of tube feeding.
   
• A person is alert and in many ways doing well.
  Tube feeding is given to satisfy hunger and support the person while their regain the ability to eat.
   
• A person is in a coma or seriously ill, and improvement is not likely.
  Many families feel tube feeding should be started because feeding is such a fundamental part of caring for another human being, and it’s inconceivable not to start it or to stop it. Countering this is the legal and ethical view that tube feeding is not a fundamental part of human care, but instead is a medical treatment or intervention. This is when discussion may include setting specific goals and timelines for this medical treatment. It’s common to wonder if not providing tube feeding will cause the person to “starve to death.” Starvation, however, is related to hunger. Without hunger, someone doesn’t starve, but rather develops malnutrition. Malnutrition describes the physical aspect of lack of food. People in a coma or seriously ill don’t feel hunger; they don’t starve, but their nutrition is affected.

What are the potential risks and benefits of tube feeding?

Consider stopping tube feeding when the risks or burdens of the feeding are greater than possible benefit. Among the burdens of tube feeding is the possible discomfort that may be caused by the tubes. In addition, the feeds themselves may cause diarrhea, reflux, aspiration, and fluid overload. It’s crucial to evaluate how someone is tolerating the feeding. It’s always important to consider whether these create more of a burden than a benefit.

How does faith or culture bear on the decision?

Family members may want guidance from members of their cultural or faith community, to help weigh the implications of stopping feeding. Talking with community members can give you support and help you come to a decision.