Where Did Your Appetite Go?

Decreased Appetite and Weight Loss at the End-of-Life

Senior woman sitting at dinning table, portrait
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Decreased appetite and it's resulting weight loss is common with many life-threatening illnesses and it’s a symptom that some patients report just as distressing, if not more so, than pain. Ill patients know they need to eat but sometime can't bring themselves to do it. Why does this happen?

You may find yourself wondering how you can help. What foods can you make that will tantalize the appetite? How can you stop the weight loss or even reverse it?

Before you whip up every one of your loved one's favorite dishes, wielding your spatula like a mighty sword, it’s important to understand why this battle is even taking place.

Anorexia vs. Cachexia

Anorexia is defined as the “lack or loss of appetite, resulting in the inability to eat.” This anorexia is different than the mental illness anorexia nervosa. It can occur with nearly all forms of life-limiting illnesses but is most common in advanced cancers. Anorexia results in weight loss that is primarily of fat but can include loss of muscle. If caught early on, anorexia may be treated and weight loss reversed with nutritional supplements or increased consumption of food.

Cachexia is defined as a state of “general ill health and malnutrition, marked by weakness and emaciation.” It is also common in advanced cancers and AIDS as well as other advanced life-limiting illnesses such as congestive heart failure.

Cachexia occurs in more than 80% of cancer patients before death and is the main cause of death in about 20% of these patients.

In contrast to anorexia, the weight loss with cachexia involves not only loss of fat and muscle, but also of bone mass. Additionally, cachexia doesn’t respond to nutritional supplementation or increased consumption of food.

The term your medical professionals may use for either source of weight loss is “anorexia/cachexia syndrome” (ACS).

Causes of ACS

Metabolic Alterations
In illnesses such as advanced cancers and AIDS, certain chemicals called cytokines are released by the body. The cytokines cause an inflammatory response within the body that can alter how the body metabolizes nutrients.

Physical Symptoms
Symptoms of disease can cause decreased appetite and thus weight loss. Common symptoms that can result in anorexia include:

  • Pain
  • Dysguesia – a change in taste, usually including aversion to meat
  • Aguesia – loss of taste
  • Hypersomia – sensitivity to smells, often causing aversion to foods
  • Dysphagia – difficulty swallowing foods
  • Dyspnea – shortness of breath
  • Nausea and/or vomiting
  • Constipation or diarrhea
  • Many more

Medication Side Effects
Medications used to treat illnesses or increase comfort can have side effects that cause anorexia. Many of the side effects are similar to the physical symptoms listed above.

Psychological or Spiritual Distress
Let’s not diminish or overlook completely the role of emotional, psychological, or spiritual distress can play in anorexia.

The effects of the illness and the treatment, coupled with psychological responses such as anxiety or depression and spiritual reactions such as hopelessness, may result in diminished enthusiasm for food and/or a lack in energy to prepare and eat it.

Other Causes
Other causes of anorexia can easily be missed but may be significant. Examples include poorly-fitting dentures and infections of the mouth or esophagus.

Sources:

Ferrell BR, Coyle N. Textbook of Palliative Nursing, 2nd Edition. Oxford Press, 2006.

Kinzbrunner BM, Weinreb NJ, Policzer JS. 20 Common Problems: End of Life Care. McGraw-Hill, 2002.

Treating ACS

The first thing you should do is discuss the problem with your nurse or physician. They will help you develop a plan of care to address the contributing factors. The approach will usually be multidimensional, focusing on symptom management, nutritional support, medications, social services, and spiritual support. It’s important to remember that approaches to treating anorexia and cachexia in advanced diseases don’t always work.

Symptom Management

If there are symptoms of illness that are contributing to decreased appetite and weight loss, those should be addressed first. Pain, nausea, fatigue, and depression are the most common anorexia-inducing symptoms and they are usually easy to treat. If symptoms are a side effect of medication, your physician may want to stop the medication (if it’s not necessary) or try a different one.

Nutritional Support

There are two schools of thought regarding eating towards the end of life: One believes the ill person should only be eating nutritiously dense foods and the other believes the ill person should eat whatever he wants. Many people will hover right in the middle, offering nutritious foods and snacks but allowing indulgences from time to time. This is probably the most prudent approach. If your loved one is loosing weight and has no interest in eating meals but loves chocolate pudding, I say give him chocolate pudding!

Some really tasty and highly nutritious supplements are on the market. (Ensure and Boost are probably the most popular.) Adding supplements to your loved one's diet can increase his overall calorie intake and help make up for any nutritional deficiencies.

Artificial nutrition in the form of tube feedings is a controversial treatment for ACS.

As noted above, once a patient is cachexic nutritional supplementation, including tube feeding, does not reverse it. Tube feedings can also have unpleasant or dangerous side effects and often increase a dying patient’s discomfort. You can read more about artificial nutrition in my article Artifical Nutrition and Hydration.

Medications

Several medications may help patients with ACS increase their appetite and gain weight. Common ones include megestrol (Megace), steroids like dexamethasone (Decadron), cannabinoids (Marijuana), and Metoclopramide (Reglan). Ask your loved ones physician if any of these medications could help. Physicians will usually try one or more of these medications for a time and discontinue them if they are ineffective. It’s important to note here that the smoked form of marijuana is still illegal.

Psychosocial and Spiritual Support

Anxiety, depression, family stressors, and other emotional and spiritual factors may contribute to ACS. Decreased appetite can also lead to a patient feeling isolated from loved on'es as meals are times for socialization.

A medical social worker (MSW), chaplain, or psychotherapist may be able to help your loved one work through such feelings.

What Can You Do to Help?

With so many factors that can contribute to a diminished appetite, you might find yourself feeling defeated already. While it's important to keep in mind that your efforts at increasing an appetite may not work, it's equally as important to not give up hope. Read "7 Ways to Whet an Appetite" for tips and tricks to stimulating a decreased appetite. Working together with your healthcare provider will prove the most effective way at rescuing a fading appetite.

Sources:

Ferrell BR, Coyle N. Textbook of Palliative Nursing, 2nd Edition. Oxford Press, 2006.

Kinzbrunner BM, Weinreb NJ, Policzer JS. 20 Common Problems: End of Life Care. McGraw-Hill, 2002.

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