End-Of-Life Nutritional Support

She's almost 70 and has struggled to control high cholesterol levels and pre-diabetes for much of her adult life, resisting tempting treats like strawberry shortcake and French fries. But now her appetite is gone, and stage four ovarian cancer is gnawing away at her insides.

She only wants ice cream, preferably chocolate with a cascade of caramel sauce. Her daughter is adamant she shouldn't have it. "Mom, you know it's bad for you," she says. But her mother is dying, and the doctor says it's essential for her to eat.

The goal of nutritional support for individuals in palliative care (when potentially curative treatments have been deemed unsuccessful and have been stopped) is to improve the remaining quality of life. Proper nutrition impacts energy and stamina levels. 

According to Courtney Pelitera RD, a registered dietician with Top Nutrition Coaching, cachexia, wasting of the body and loss of muscle and fat are frequently seen towards the end of life. This can lead to impaired mobility, unplanned hospitalizations and increased symptoms.

Chemotherapy and radiation treatments, particularly to the mouth and other areas involved in the digestive process, can cause tissue injury and irritation and affect eating ability. Because the gut is not functioning normally and people may be less physically active, several symptoms are often seen in people undergoing cancer treatment, living with cancer or at the end of life, says Pelitera. 

These changes impact appetite and ability to tolerate certain types of foods or liquids and may include:

• Appetite loss, anorexia
• Taste and smell changes
• Diarrhea, constipation, nausea, indigestion and heartburn
• Inflammation of oral mucosa and mouth sores, dry mouth
• Difficulty chewing or swallowing (dysphagia), choking episodes

According to Pelitera, "Sharing a meal is one of the most common ways to socialize. In most cultures, people use food to celebrate milestones and special occasions. It is also sometimes used for comfort and to cheer people up. When someone is ill, visitors will often bring casseroles or sweets."

However, it can be very upsetting when someone you care about is uninterested in eating or refusing previously enjoyed foods. It is painful to see someone lose weight and become weaker, even though it is the disease process and not only the decreased food intake that is causing it.

The inclination to push food and prepare elaborate meals to try and entice the person to eat is counter-productive. The ill person may feel guilty, as if they are letting you down, and might try to eat even though it can cause them physical discomfort. As Pelitera explains, "Because hunger cues are gone, people at the end of life are not uncomfortable if they are not eating or drinking."

End-of-life nutritional care is focused on managing a lack of appetite, minimizing food-related discomfort and maximizing food enjoyment. Family members and caregivers must listen to the individual's wishes and not be concerned with previous food restrictions to control conditions like hypertension or kidney disease (unless certain foods or drinks cause imminent or immediate danger).

Previously favorite foods may be poorly tolerated or, due to taste changes, may no longer be appealing. Foods that may cause difficulties include those with a strong odor, carbonated beverages, highly spiced foods, hot foods or drinks, and dry foods such as muffins.

Sauces and gravies make meat dishes easier to swallow. Bland foods such as rice, mashed potatoes and bread (perhaps dunked in milk to soften) may be more acceptable.

When appetite is poor, eating smaller meals throughout the day, adhering to a strict eating or drinking schedule, and having snacks handy can be helpful strategies. Some people do better with cold foods, while others prefer room temperature or lukewarm.

The American Cancer Society says frequent constipation can be worsened by dehydration, inactivity, chemotherapy or pain medications like opioids. Increasing fluid intake, especially prune or apple juice, and hot drinks such as tea and decaffeinated coffee are helpful. As recommended by a doctor, stool softeners, laxatives or fiber supplements may be needed.

High-fiber foods such as whole grains, fruits and vegetables can contribute to regularity. For dry mouth, helpful strategies include adding lemon or lime to water, using sugar-free gum or mints and avoiding alcohol and drinks with caffeine. If mouth sores are present, straws generally help decrease pain while drinking.

Pureed food, particularly meat or vegetables, is only generally enjoyed by some adults. Plant-based yogurts, ice cream, milkshakes, puddings and cream soups may be more palatable and are easy to swallow. 

For someone prone to choking episodes, thickening liquids or pureeing fruit in a blender may help. Tapioca, flour and cornstarch must be cooked and used as reducing agents or commercial thickeners may be used.

As the disease progresses, people may be less interested in eating or unable to tolerate "normal" food and drink. "The best time to introduce liquid supplements are when people begin to skip meals or eat less. While we want them to maintain their chewing and swallowing abilities as long as possible, supplements can be helpful in insuring that the person takes in adequate calories and protein," Peltier says. 

Supplements can be used in place of a meal or as an in-between snack. The two most used supplements are Boost and Ensure, which are lactose-free and generally taste better when cold. However, Pelitera says that some people enjoy them served warm, similar to a vanilla latte. They can also be used as the base for a milkshake with peanut butter or bananas blended in for additional flavor and calories.

Utilizing artificial nutrition and hydration (ANH), administered via tube feedings through the nose, stomach or intestines can be controversial and wrenching as the end-of-life approaches. This is one reason a living will and health care proxy (end-of-life documents) are essential. 

These specify a person's wishes about treatment versus comfort care when they are actively dying and name a person to make decisions for them if they cannot do so. According to the Hospice Foundation of America, studies show that ANH does not prolong life in patients near death or whose disease is so advanced that they are unlikely to improve. 

In dementia patients, in particular, tube feedings may cause harm. Complications can include pain, bloating and aspiration pneumonia, and the patient might need to be physically restrained to prevent tube dislodging. In collaboration with the medical team, decisions need to be made with the best interests of the dying person in mind.

Working with a dietician specializing in oncology or chronic illness can help patients and families deal with end-of-life challenges that impact nutritional status; they can also be a source of emotional support. 

Depending upon the diagnosis, and sometimes requiring a physician referral, medical nutrition therapy services provided by a registered dietician are covered by most public and private health insurance, including Medicare and Medicaid.

The ancient Greek physician Hippocrates wrote, "Let food be thy medicine and medicine be thy food." When food or medicine can no longer heal the body, a loving presence will always be the most curative element in helping to heal the soul.

Barbra Williams Cosentino RN, LCSW, is a psychotherapist in Queens, N.Y., and a freelance writer whose essays and articles on health, parenting and mental health have appeared in the New York Times, Medscape, BabyCenter and many other national and online publications. Read More