“Food is symbolic of love when words are inadequate.”

Alan D. Wolfet

Mae was 81 years old when she was diagnosed with advanced lung cancer. Her treatment plan was to start radiation and chemotherapy. Prior to starting treatment, she had lost 10 pounds over 8 weeks, and very few foods were appealing to her. She was encouraged to add protein supplements to her diet and eat frequent small meals.

Her daughter made all her favorite foods, brought her protein drinks and powders, and appetite stimulants were started. Mae would try to eat but felt full after only a few bites. Treatment began and Mae’s weight loss continued, along with fatigue. Her daughter became frustrated, insisting to Mae, “you have to keep eating!”

In fact, Mae could not force herself to eat, and she did not want, nor could she tolerate, any medically administered nutrition and hydration. She was struggling to continue with her treatments.

Nutritional battles

When someone has an advanced illness and is approaching the end of life, they often experience a loss of appetite, also called anorexia. This is especially common with cancer but can also occur with other major medical conditions such as chronic obstructive pulmonary disease (COPD), end stage heart disease, and kidney failure.

This can be immensely upsetting for the individual, but also for the family when they are no longer able to offer the comfort and gift of food to their loved one. Meals and snacks tend to pile up at the bedside, with relentless encouragement to eat. Family members can become laser focused on their loved one’s food intake. All out of love.

It is understandable that families might even panic when observing weight loss in an ill family member. This disinterest in eating can be interpreted as “giving up” or “starving to death.” Very emotional territory.

More complicated than losing appetite

In the late stages of an illness, in addition to loss of appetite, there are several other related changes happening in the body. There are underlying metabolic, hormonal, and inflammatory processes that can all contribute to unintended loss of weight (mostly muscle), and this syndrome is known as cachexia. These processes are not completely understood, and research continues to try to find ways to improve appetite, reduce this inflammatory response, and improve quality of life. Early intervention could help patients to better tolerate chemotherapy or other medical treatments. Adding calories alone has not been the answer, and at a certain point cachexia is not reversible.

It is not that patients won’t eat, they simply can’t. Eating more than small amounts of food or sips of fluid can cause discomfort.

Although cachexia may not be reversible, it is always important to address those factors that might be contributing and to focus on the best quality of life possible. For example, pain that is poorly managed can affect appetite, along with constipation or nausea, and these symptoms may require careful attention. If certain medications are further aggravating the situation, simplifying medications may help. Dietary restrictions that have been followed religiously may no longer be appropriate.

Understandably, families may ask if adding intravenous fluids or feeding tubes could help. Close to the end of life, there is little to no medical evidence to support adding artificial nutrition or hydration. In fact, there may be complications with administering them, and additional fluids may leak into tissues, causing generalized swelling and increased breathing problems. A case-by-case plan is needed that supports the wishes, values and beliefs of each person and their family.

For some, a short trial of artificial hydration (fluids only) may be requested, but it would be important to review the risks versus the benefits for each individual.

The concept of suffering

The underlying process behind the loss of appetite might be explained to family members, but understandably the impact is mostly on the heart. It may still feel wrong not to have chicken soup at the ready or to stop sharing meals together and all the while worrying that a loved one is experiencing discomfort from hunger and thirst. It is important to emphasize that food at this point is not being withheld, it is being refused.

Based on research and experience, the anorexia-cachexia syndrome is not associated with distressing symptoms, especially when comfort measures are offered.

Comfort measures

Early in the disease process, nutritional guidance can be helpful in targeting high protein, nutrient dense foods and supplements, as well as supportive counseling. In more advanced stages of an illness, the primary recommendation is to follow the patient’s lead. When they do feel like eating, the mission is to find WHATEVER it is that sounds good, and often it is ice cream. Simply tasting a favorite food might be enough.

In the final weeks to days, offering small sips and bites, using saliva substitutes, and assisting with impeccable mouth care should all be incorporated into the daily care as tolerated. Keep lip balm in every pocket and every drawer. Understanding that this is part of the natural dying process can help to reassure the family and divert attention away from eating.

Looking back, one woman shared her thoughts and stated, “I wish I would have spent less time fighting about pudding and more time telling my husband that I loved him.’” I have heard similar statements from other caregivers.

Interestingly, even Mother Nature has her own comfort measure to offer. In the setting of terminal dehydration and weight loss, endorphins are released. These endorphins can induce a sense of well-being similar to a runner’s high. Comforting to know.

The rest of Mae’s story:

With increasing fatigue and weakness, cancer treatment became too burdensome for Mae. She asked to have it stopped and agreed to be cared for by hospice. She moved in with her daughter and with time, support and education from the hospice team, Mae’s family began to better understand her lack of appetite. With less focus on food, they could spend more time connecting through other activities. As long as Mae had a bit of ice cream or tapioca available, she was content. She denied any sense of hunger or thirst as long as her mouth and lips were kept moist.

Upcoming program

“Understanding Dementia: The Diagnosis and Treatment of Alzheimer’s Disease” will be the next presentation for “Let’s Talk: Caregiving Matters.” On Tuesday, Nov. 14, at 3 p.m. in the third-floor conference room at Rogers Free Library, Dr. Paul Malloy will be speaking. He is a clinical psychologist and was co-director of Butler Hospital’s Memory Disorders Clinic.

Bonnie Evans, RN, MS, GNP-BC, lives in Bristol and is a geriatric nurse practitioner and End of Life Doula. She can be reached at bonnie@bonnieevansdoula.com.