Patient Teaching Guides

NUTRITION - GENERAL INFORMATION
Nutrition plays an important role in our lives, from the time we take our first breath as a baby until we die. Our culture places emphasis on planning meals, counting calories, and also views meal time as a time for social interaction. Preparing meals for our families is a way of showing love, concern, and caring in a direct, nonverbal way.

Whenever anyone is ill, whether due to an injured ankle or a cancer-related process, the appetite decreases. The body's need for high calorie and protein foods is altered because of a decrease in activity, exercise, and general metabolic rate.

Hospice of Hope cares for many people who are dealing with a decreasing appetite, which is also compounded by symptoms such as nausea, vomiting, pain, and constipation.

Families are faced with finding the right kind of foods and encouraging their family member to eat. This can often lead to a "food struggle" that may cause friction within a family.

Hospice believes that this struggle may be avoided by allowing clients to eat what they want, and when they want it. Individuals faced with a terminal illness may desire to spend more energy on activities and relationships rather than food. The disease process may also cause foods to taste differently: bland, salty, or sour.

Good nutrition is important, however. Hospice offers some suggestions and helpful hints to assist with good patient nutrition.
    
Factors Which May Decrease Appetite:
      1. Pain
      2. Constipation
      3. Nausea and vomiting
      4. Bowel tumors or obstruction
      5. Weakness and fatigue
      6. Medications
      7. Dry or sore mouth
      8. Chemotherapy

Food Suggestions and Helpful Hints:

• Eat when you are hungry, even if it is not mealtime.

• Eat small, frequent meals throughout the day, rather than three (3) large meals; or just "nibble" all day long. Try to keep high-calorie, nutritious snacks available.

• Don't force yourself to eat.

• Use a small heating dish, such as that used for baby foods to keep small amounts of food warm with minimal kitchen preparation.

• Use instant breakfast mixes-they are high caloric and can serve as a full meal.

• Use protein supplements such as Ensure.

• Limit fluids with meals, and, instead, fill up on food. Drink fluid between meals.

• Activity before meals may help to stimulate your appetite, then rest after meals.

To increase calories:

• Add extra butter, margarine, whipped cream, etc. to foods

• Add sugar to foods

• Select fruits packed in heavy syrup

• Make Jell-O with fruit juice instead of water, and add fruit, whipped cream, or cream cheese

• Eat hot cereals with toppings such as margarine, pureed fruits, molasses, or syrups

To increase protein:

• Add non-fat dry milk to bread mixes, milk, puddings, and hot cereal

• Drink Carnation Instant Breakfast as a beverage or snack

Nutritious Recipes:

The following recipes can be used to supplement calories and/or protein in your diet:

High Protein Milkshake

    Blend: 1 cup milk
     1/4 cup instant nonfat dry milk
     ice cream flavoring (vanilla, chocolate, syrup, or fruit)

Instant Breakfast Shake

     1 cup milk
     1 pack Instant Breakfast
     1 cup ice cream

Strawberry Milkshake

     1 cup frozen strawberries
     1/2 cup ice cream
     1/2 cup whole milk

Mix or blend until smooth.

Orange Shake

     3/4 cup orange juice
     1/2 cup vanilla ice cream
     2 Tablespoons dried milk powder

Mix thoroughly.

Banana Milkshake

     Whole banana, sliced or mashed
     Few drops of vanilla
     1/2 cup vanilla ice cream

Blend at high speed until smooth.

Peanut Butter Shake

     3/4 cup whole milk
     1 Tablespoon peanut butter

Ice Cream Float

     2 or 3 scoops of ice cream
     Your favorite soft drink

Put ice cream in glass, pour soft drink over it and mix.

Pick-Me-Up Cocktail

     1/4 cup orange juice
     1/2 banana
     6 ice cubes
     1/4 cup milk

Blend in blender until frothy.(Good source of potassium)

Quick Chocolate Shake

     1/3 cup uncooked oats
     1 cup milk
     4 or 5 crushed ice cubes
     1 Tablespoon sugar
     1/4 Teaspoon vanilla

Place oats in blender; blend about 1 minute, stop occasionally to stir. Add remaining items. Blend on high for 1 minutes. High Fiber!

Sherbet Freeze

     1 cup orange juice
     1 cup orange sherbet

Mix and eat.

Peanut Butter Snack Spread

     1 Tablespoon instant dry milk
     1 Teaspoon water
     1 Teaspoon vanilla
     1 Tablespoon molasses
     3 Tablespoons peanut butter

Combine dry milk, water, and vanilla. Stir until moist. Add molasses and peanut butter stirring slowly until blended. Spread on graham crackers.

Summer Fruit Salad

     1 cup cubed melon
     ½ cup pineapple
     1 cup diced fruit; pears, apples, peaches, etc.
     1/4 cup orange juice

Cut up fruit, combine with orange juice. Chill 1 hour or more.

Carrot-Raisin Muffins

     1 cup all purpose flour
     1 cup whole wheat flour
     2 Teaspoons baking powder
     1/4 Teaspoon pumpkin pie spice
     3/4 cup shredded carrots
     2 Tablespoons molasses
     1/4 Teaspoon salt
     1 egg, beaten
     1 cup milk
     2 Tablespoons vegetable oil
     1/3 cup raisins

Mix flour, baking powder, salt, and spice in large bowl; stir in carrots and raisins. Make a well in center of mixture. Mix eggs, milk, oil, and molasses. Add to dry ingredients, stir until just moistened. Spoon into muffin pans coated with cooking spray. Fill 3/4 full. Bake at 425 degrees for 15 minutes. Yield: 1 dozen.

Fruit and Sour Cream

Put sour cream on sliced fresh fruit. Sprinkle with brown sugar. Let set in refrigerator for 1/2 hour.

Yogurt Fruit Crunch

     2 cups plain yogurt
     1 cup dry cereal
     1 cup fruit

Spoon layers of 1/2 cereal, yogurt, and fruit into 4 bowls.

Other Ideas:

• Peanut butter on bread, crackers, celery, waffles

• Yogurt with fruit or nuts

• Cottage cheese and fruit

• Pudding

• Boiled eggs

• Cheese and crackers

• Cream cheese on crackers

• Cereal and milk

Eating and Drinking Aids:
Special cups with lids, such as the "Tommee Tippee" cup, are useful if there are difficulties with coordination or swallowing. You may also use Styrofoam cups and lids like those used in take-out food places. Soup may be served in a cup for ease and safety.

If a family member's grasp is weak, something such as a stretch-knot coaster, adhesive-backed bathtub safety treads or similar rubber decals placed around the glass will provide a firmer grip.

Built-up handles on knives, forks, and spoons will help if there is difficulty grasping. You can also use foam rubber curlers, sponge rubber, or washcloths.

A clip-on plate guard will prevent food from being pushed off the plate. You can also use a dish with a high edge, or one that is raised on one side.

Special Considerations for changes in taste buds:

• If beef and pork taste bitter, cook meat in wine, soy sauce, fruit juice, or some other marinating liquid.

• Try to use more poultry and dairy products as your protein source.

• To avoid bitter or metallic taste, try using plastic forks, spoons, and knives instead of metal utensils.

• Try a variety of liquid nutritional supplements to avoid growing tired of one product.

For diarrhea:

• Eat only cooked or canned fruits and vegetables.

• Try a low residue/low fiber diet.

• Drink plenty of fluids between meals to replace lost fluids.

• Avoid gas-forming foods, such as cabbage, onions, broccoli, cauliflower, corn, beans, and carbonated soft drinks.

• Eat high-potassium foods such as bananas, cantaloupe, oranges, apricots, and spinach, to replace potassium your body may be losing.

• "Milk sugar" may aggravate diarrhea. You may need to limit milk to two (2) cups a day.

For dry mouth:

• Serve foods with gravies, broth, margarine, and sauces.

• Suck on hard candy, ice chips, or chew gum.

• Sip fluids frequently.

• Try blending foods in a blender or food processor, adding broth, juice, or milk to thin and moisten.

• Ask your nurse about artificial saliva.

For sore mouth and throat:

• Avoid acidic foods (tomato, orange, lemon juice, vinegar), salty foods (chips, pretzels, salted crackers), spicy foods (chili, tacos, pizza).

• Avoid alcohol and tobacco products.

• Avoid extremes in food temperatures.

• Keep lips and mouth moist during and between meals.

• If you have sores under dentures, take them out while eating. Eat softer, easy-to-chew foods.

For nausea/vomiting:

• Avoid strong-flavored, overly sweet foods.

• Eat foods served at room temperature.

• East slowly and chew well.

• Nibble on dry foods like saltine crackers, toast, or dry cereal.

• Ask your nurse about medication that may be helpful if nausea is an ongoing problem.

FOOD AND WATER: A HOSPICE PERSPECTIVE

"He's not eating a thing. I feel like I'm letting him starve. What can I do?"

"All they talk about is food, always wanting me to eat more. Can't you make them understand that I'd eat if I could?"

Hospice team members hear these questions from almost every patient and family with whom they work. Every terminally ill patient experiences loss of appetite and weight loss; and almost every family member sees food not only as necessary for survival, but also as a source of nurturing, caring, and comfort. While family members become focused on insisting the patient eat even when he says "no"; the patient is rarely concerned about loss of appetite. This conflict can be emotionally painful to both patient and family, leading to conflict and stress as the disease progresses.
     

In the hospice care program, nutrition is an issue that must be dealt with at every home visit and, as with other aspects of care, nutrition involves physical, psychological, and spiritual issues. The goal of hospice care is to:

• educate the patient and family to prepare them for changes that will occur as the disease progresses,

• explain why these changes occur,

• outline what options for care are available,

• describe what the outcome of intervention is likely to be, and

• support the decision they make.

Concerns related to nutrition and hydration are emotionally charged. Patients and families need to know that loss of appetite and weight are a part of the disease progression and dying process. While medical treatments are available to relieve many problems experienced by hospice patients, there is little to offer that will reverse weight loss. Family members need to know that the human body has many ways of adapting during the dying process; and reduced interest in food and water is one of nature's strategies which allows the patient to die more comfortably and peacefully.
     

Patients and families need to understand the effects of food and water through the early stages and the final stages of terminal illness. In the early stages, it is appropriate to encourage the patient to eat and drink, to offer favorite foods frequently and in small quantities throughout the day. It is helpful for families to know how much it is realistic to expect the patient to eat or drink. A small glass of juice and a few bites of food might be considered a meal. Dietary counseling can be appropriate but must be done with caution. Anxious family members will try anything and everything that is suggested. Most books on cancer are full of high calorie/high protein recipes that may be appropriate for some cancer patients but are not very likely to be palatable to a terminally ill patient who has lost interest in food. The patient him/herself is the best judge of the foods that are appropriate to serve. As the disease progresses the family needs to understand that continuing to encourage the patient to eat and drink will not always work. Forcing food and fluids may cause both physical and emotional discomfort and will not significantly increase the patient's life expectancy.
     

When the patient simply refuses to take food, family members feel personally rejected and frustrated in their role of nurturing and caregiving. They express feelings of anger because the patient has "given up" and "would get stronger if only he would eat." The fact that the person is not eating is a constant and painful reminder that death is the ultimate outcome. Family members need someone to listen as they express their feelings and fears; to identify the ways in which roles have changed because of the patient's inability to eat; and to explore other ways of expressing caring and nurturing.
     

If the conflict over food continues the patient can feel guilty, as if he/she is disappointing his/her family and he/she may try to force him/herself to eat, even if it makes him/her physically uncomfortable. The guilt can go so far that the patient also begins to believe he/she is not trying hard enough to get stronger and that he/she has failed his/her family in some way. Some patients will simply refuse to eat or drink anything, as a way of exerting some control in a situation where they feel they have lost control, or to force the family to accept the reality of the disease progression.
     

It is important for the hospice team to work toward dispelling the family's and patient's fears about pain and discomfort caused by the reduced intake of food and water. The physician, patient, family and hospice staff need to share information and discuss the options of intravenous fluids and tube feeding as the disease progresses. Hospice team members have had extensive experience with patients who stop eating and drinking as death approaches. Many studies have been done comparing the comfort of patients who choose not to have intravenous fluids and tube feeding and those who choose to have them.
     

Both experience and studies show that dehydration, caused by decreased or no oral intake of fluids, does not cause discomfort if care is given to prevent dryness of the mouth. Some patients reported feeling euphoric, or an increased sense of well-being. The drowsiness caused by dehydration may itself be beneficial. Dehydration may increase comfort by reducing gastric secretions which cause nausea and vomiting. Hospice team members know from their own experience that suctioning to alleviate the buildup of fluid in the lungs is unnecessary for dying patients who are not receiving intravenous fluids or tube feedings. The placement of intravenous needles and the need for family members to manage and monitor intravenous fluids can create stress and discomfort for both patient and family. It is necessary to weigh the quality of life against the quantity of life, possibly a few days, if intravenous fluids are used.
     

The body's ability to digest and use food changes in the later stages of terminal illness. Liquid supplements of food through tubes in the nose or directly into the stomach cannot be expected to result in weight gain or to significantly lengthen life. Hospice has cared for patients with cancer receiving these feedings. The patients continued to lose weight and in some cases developed problems which created discomfort such as nausea, vomiting, diarrhea, or gastric distention. As with intravenous fluids, a tube must be placed in order to deliver liquid food to the body and the family must manage and monitor carefully to prevent displacement of the tube. Again, the quality vs quantity of life must be weighed.
     

Two essential parts of the Hospice philosophy are the belief that death is a natural process and that the patient and family have the right to make choices regarding care. Hospice is founded on the belief that the body adapts as a disease progresses and death approaches; and that these adaptive processes should not be interfered with unless there is clear evidence that benefits to the patient will outweigh any discomfort. But the ultimate decision is the patient's and family's.
     

Hospice team members provide information, facilitate discussion regarding these difficult decisions, help to explore concerns and feelings and to clarify values as part of the decision-making process. Once the decision is made by the family and patient, it is the role of the Hospice team members to give their support to that decision.
          

-By Judy Sandler, RN, MSN, CS, OCN

MOUTH CARE

Oral care, or mouth care, keeps the mouth and teeth clean. It includes the care of the teeth, gums, tongue, and mouth.
 

Mouth Care:

• increases comfort

• prevents infection

• prevents mouth odors

• stimulates circulation

• helps food taste better

Good mouth care is especially important for those who:

• have a fever

• breathe through their mouth

• use oxygen

• have difficulty eating and drinking

• are unconscious

Mouth care should be done on awakening, after meals and at bedtime. Those with dry mouths may need mouth care more often. Someone who is unconscious needs mouth care at least every two hours. The following are some general guidelines for tooth brushing, denture care, and mouth care for the conscious person.

Tooth Brushing:
-Use a toothbrush with soft or medium bristles, toothpaste, dental floss, and mouthwash.
-Gently brush all surfaces of teeth, gums, and tongue.
-Rinse well with water. Use warm water if teeth are sensitive.
-Use dental floss to clean well between all teeth.
-Rinse well with mouthwash.

Denture Care: 
-Use a toothbrush, toothpaste, denture cup, and mouthwash.
-Remove dentures and place in denture cup.
-Line the sink with a towel to provide a softer surface in case of any slippage.
-Rinse each denture under warm water and return to cup. Do not use hot water, as it may damage the dentures.
-Brush all surfaces of the dentures, and rinse well with warm water.
-You may want to gently brush the gums with toothpaste, then rinse with warm water. If not, then rinse with mouthwash and insert dentures.

Mouth Care For The Unconscious Patient:
-You will need toothettes or swabs, mouthwash, water, Vaseline, and gloves.
-Wash your hands and put on disposable gloves.
-Clean all surfaces of the client's mouth with swabs dipped in the mouthwash.
-Rinse mouth with swabs dipped in water.
-Apply Vaseline to lips.
-If needed, use a tongue blade padded with gauze to help hold the mouth open.

Special Notes:
-Always wash your hands before and after providing mouth care for someone else.
-Aways wear disposable gloves when giving mouth care to someone else to help prevent the spread of any possible infection.
-Mouth care may need to be done every two (2) hours for someone who is unconscious or has a dry mouth. It may be helpful to do this at the same time as turning and repositioning.

DRY MOUTH 

1. Drink a lot of water. Take small sips frequently throughout the day, and before, during, and after meals.
2. Avoid alcoholic and caffeine-containing drinks, and highly-spiced, bulky, and dry foods. Moisten dry foods with a liquid, or serve foods with gravies, broth, or sauces.
3. Chew sugarless gum, and suck on hard candy, ice chips, popsicles, pop or juice frozen to slush consistency.
4. Keep your mouth clean. Use toothettes if you are unable to use a toothbrush to brush your teeth. Avoid using mouthwash products that contain alcohol or detergents. Ask your nurse to assist you in choosing products.
5. If you have difficulty eating or swallowing, try blending foods in a blender or food processor, adding broth, juice, or milk.
6. Try not to breathe through your mouth.
7. Apply petroleum jelly or lip balm to your lips every two (2) hours and as needed to reduce drying and cracking.
8. Use a saliva substitute product as often as needed.
9. Add moisture to the air by using a vaporizer or humidifier.
10. Cover your mouth and nose with a scarf when outdoors in extremely cold weather.

FEEDING

If your loved one is very weak or is unable to use his/her hands, he/she may have to be fed. It is important to help him/her do all that he/she can do for him/herself. Mealtime should be a pleasant time. Make him/her feel that it is a pleasure to share the time and experience. Sit down, relax, and talk while he/she eats. This will help him/her to avoid feeling that mealtime is a burden to others.
     

If he/she is paralyzed or semiconscious, it is necessary to know before feeding him/her whether he/she is able to swallow. If he/she is paralyzed on one side, place the spoon on the side that is not weak.

Preparing For Mealtime:
1. Have him/her wash his/her hands or wash hands for him/her.
2. Raise his/her head and shoulders using pillows or a backrest. Do not let the neck bend forward, this interferes with swallowing.
3. Allow him/her to have mouth care.
4. Place a napkin or towel on his/her chest, and cover the pillow and other bedding as needed.
5. Arrange the food attractively. Serve hot food hot, and cold food cold.

Feeding Your Loved One:
1. Wash your hands.
2. Sit in a comfortable position beside him/her. Avoid hurrying.
3. Test the temperature of the liquids. Pour a few drops on the inside of your wrist. It should sting, but not redden the skin.
4. When using a spoon, fill it two-thirds full and touch the bottom to the plate or bowl to remove any drips.
5. Touch the side of the spoon to the lower lip, then tilt the spoon, allowing the food to run into the mouth.
6. Give liquids through a drinking straw, if possible.
7. When using a cup, support the head and raise it slightly by placing your arm under the pillow.
8. Offer solid foods on a fork or a spoon if the patient can chew them.
9. Allow plenty of time between mouthfuls.
10. After the meal, help him/her wipe his/her mouth, wash hands again, and provide for mouth care.