Decreased Eating
May feel more comfortable eating small snacks rather than full meals
May not be interested in eating on a regular schedule
May find food genuinely repulsive
Nausea will greatly decrease the interest in food
May not initiate meal discussions, but may merely accept food when offered
May no longer be interested in foods that require a lot of "work" or foods that previously made him or her choke
May prefer softer foods such as pudding, yogurt, mashed potatoes and gravy, ice cream, or blended drinks (see below for smoothie
recipes and links)May lock on to a single favorite or a small repertoire of foods so that there is no longer a healthful variety to the diet
May have a difficult time choosing among presented options; may do better when each option is presented separately with a yes/no
response.
Not: "Do you want scrambled eggs or French toast?"
Better: "Do you want scrambled eggs? No? Would you like French toast?"May express interest in a food but then no longer be interested or take only a few bites of it when it arrives
May feel the sensation of something within the throat (often, mucus) and may find swallowing more difficult
Increased sleeping may unavoidably affect the frequency of meals
May experience increased clumsiness in feeding oneself and may require more assistance (especially if in bed while eating)
May not fully swallow foods or may leave unchewed bits within the mouth
Some patients maintain a hearty appetite right up until the end, when there is a dramatic change; most experience a waning interest
over several days to a weekIn the final week or two of life, may reach a point of adamantly rejecting all offers of food; this may include clenching the teeth or lips, turning the head, clamping down onto the spoon or moisturizing sponge/cloth, accepting a straw but not sucking anything in, or spitting out food or drink
The Signs
Annoyed at having food pushed at him or her so often
Too tired to eat and too tired to care
Truly disinterested in or disgusted by food
Unappreciative of the fact that not eating will only add to the fatigue and weakness
Frustrated or embarrassed if help is required in order to eat
Determined not to give in to the caregiver/patient power struggle
Desperate to maintain control and independence in this major, vital area
Fearful of feelings of choking or "drowning"
Strongly aware of a sensation of fullness in the throat due to mucus
In the very end stages, willful refusal of food can be an expression of how exhausting eating can be or can signal a plea not to be forced to survive
What the patient may be feeling
What the caregiver may be feeling
Disappointed by the "rejection" of offered meals because "food is love"
Optimistic that the following day will bring a return of appetite
Helpless and inept at nourishing the patient adequately
Afraid that each skipped meal means another lost opportunity for calories and strength
Frustrated by how hard it is to schedule other family members' meals around the patient's unpredictable schedule
Impatient with the tug-of-war over control or the repetitive battle of encouraging the patient to eat
Insecure about whether to wake the patient in order to maintain nutrition
Afraid that as less food is taken in, it will become harder to administer certain medications within the food
Afraid that death will come sooner---and be partially the fault of the caregiver---if the patient's nourishment decreases
Worried that refusal to eat may be a form of suicide by the patient
Desperate to find creative solutions in more appealing foods
Sad because the adult caregiver/patient roles have become more like those of parent/child
Fearful that hospice nurses might look upon the quality of caregiving judgmentally if mealtimes have not been more successful
Exasperated and defensive when advice is offered by visitors and family members who don't understand and appreciate the measures already taken by the caregiver
Frustrated and defensive when outsiders push for the patient to be fed, even by stomach tube or via IVs, once all food intake has stopped
in the final period of lifeAfraid that backing away from pushing food is the equivalent of "letting the tumor have its way," as if in acceptance, when this is not actually the case
Offer---never push---foods.
If the patient prefers soft foods, making up a blended drink with a base of canned Boost or Ensure, with added fruits like bananas or strawberries and a bit of ice cream or yogurt, can provide nutrition and calories as well as flavor.
Don't worry if the patient latches on to a particular favorite food and isn't too interested in variety. A well-balanced diet is less important now than it was; most important, however, is the quality of your relationship with the patient.
If the patient doesn't want the bowl of broccoli but has a hankering for a Snickers bar, know that the Snickers bar will not kill the patient...nor will the broccoli save his or her life. Maintain perspective over the situation; small choices such as this will not alter the outcome. Whenever possible, maintain the patient's dignity and independence, and take pride in doing so.
Don't spend a loved one's final days or weeks struggling over feeding issues. There are other wonderful ways to "feed" the patient at this time---read aloud to the patient, brush his or her hair, hold the patient's hand, talk and listen, open up a photo album and discuss old times and outrageous hairstyles, etc. There comes a time when that "food is love" statement must be flipped around as the caregiver instead offers "love as food."
If medication is added to foods---check with the doctor, hospice nurse, or pharmacist before doing so---put it into a small quantity, not a large bowl or glass. If the patient decides not to finish the food or drink, you'd have no way of knowing how much medicine was actually taken in, and you wouldn't be able to store the rest for later. It is best to offer the medicine in a single teaspoon of something thick and flavorful, say, chocolate pudding, and then allow the patient to eat more if able.
The patient may have more trouble with thin liquids than with semisolid foods, so if choking and spluttering become a problem, you may need to avoid broth-based soups and offer beverages through a straw.
It can be wise to encourage the patient to bend forward or sit up straight and attempt a throat-clearing cough (to dislodge mucus) before beginning a meal. If the patient brings up mucus material into the mouth, use a paper towel to clear it away before offering foods. This may make the swallowing path clearer and avoid choking during the meal.
Offer drinks frequently during the meal, to help clear the mouth and throat. After the meal, encourage more drinking, as remnant foods---and even medications---sometimes remain within the mouth and can cause problems once the patient has lain down to sleep later.
Once the patient's body no longer truly needs food, he or she will strongly reject it, even by clenching the teeth or adamantly shaking the head. At this point, forcing food or feeding the patient by stomach tube or IV can actually cause harm and pain, a fact that many people are not aware of. The "work" of dying takes an incredible toll on the patient's body, and as certain systems become inefficient at processing food and wastes because of the natural shutdown process, introducing food can cause tremendous discomfort and gain nothing in terms of time.
Know that friends, family, and other well-intentioned people on the periphery of caregiving may not understand the dynamics of the dying body. As difficult as it can be for the caregiver not to become defensive in "justifying" his or her actions on behalf of the patient, explain that feeding past the point of interest could, in fact, do more harm than good. Know also that, for many people who have not played a close, active role in the journey, the realization that the fight is drawing to an end can be traumatic, while long-term caregivers may have done some pre-grieving and have a firmer, more logical sense of the situation and its needs. Encourage peripheral caregivers who join the scene in its final stages to express love for the patient in other ways which will bring greater comfort and be less stressful on everyone.