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July/August 2022
Diminished Appetite at End of Life Ensuring Comfort for Terminally Ill Patients Research suggests that from 15% to 50% of older adults experience diminished appetite and associated weight loss at some point during the aging process.1,2 Women, nursing home residents, hospitalized patients, and those of very advanced age appear to be among the groups most at risk.3 Many factors can affect appetite, including the following2,3: • age-related physiological changes, such as digestive or hormonal changes, loss of physical function, poor dentition, deceased energy, and impairments in vision, taste, or olfaction; • changes in psychological functioning, such as anxiety, grief, or depression; • changes in social circumstances, such as reduced assistance with meals, increased isolation, or limited meal choices; • acute and/or chronic diseases; and • medication side effects, such as sedation, nausea, or an altered sense of taste or smell. Weight loss due to decreased appetite can increase the risk of malnutrition as well as susceptibility to falls, decreased bone mass, impaired muscle function, and a variety of illnesses among older adults.4-6 Professionals working with older patients have a range of options for restoring nutritional intake and optimizing weight maintenance. In addition to treating any underlying physical or psychological causes of appetite loss, interventions may include medication changes; nutritional education; assistance with meal preparation and/or eating; the use of assistive devices, such as oversized eating utensils; increased social engagement at mealtimes; and food modifications, such as altered texture, and/or adding oral nutritional supplements. When these interventions fail and weight loss continues, medical teams may raise the possibility of more invasive interventions, such as enteral and parenteral nutrition via nasogastric or percutaneous endoscopic gastrostomy tubes. Loss of Appetite Is Expected For example, according to Tani Bahti, RN, CT, MPH, author of Dying to Know: Straight Talk About Death and Dying, “For someone who is approaching their final months or weeks of life, tube feedings are typically contraindicated and can be a burden. Not only is there no benefit but it can actually result in a poorer quality of life by causing physical discomfort including pain, nausea, diarrhea, or gastric reflux, as well as respiratory distress, even aspiration pneumonia.” According to Jared Lowe, MD, HMDC, medical director for University of North Carolina Hospice, “Decreased appetite, or anorexia, is incredibly common in both serious illness and at the end of life. There can be much inflammation in the body, and those inflammatory molecules cause a decrease in appetite. The common analogy is when someone has the flu and just doesn’t feel like eating.” “Another factor,” Lowe says, “is that as patients approach the end of life, the ability of their body to maintain normal functions is decreased, including the drive to eat and the ability to process nutrients that enter the body. In those situations, we find that continuing to administer nutrition or hydration can actually make the person more uncomfortable.” Lowe often discusses with patients and families the fact that “carbohydrates are the major source of energy for our bodies. When our bodies no longer have enough carbohydrates to metabolize, such as when we stop eating, it switches over into a state called ketosis, where we start metabolizing fat instead. One effect of ketosis is that your hunger decreases.” “In the months or weeks or days before death” Bahti says, “the body does not need food to do its job of shutting down. In fact, food can often create discomfort. Because the body is slowing, it loses the ability of the liver and gastric secretions to break food down and utilize it, in addition to the slowing of the intestines to move food along the digestive tract. Eventually the swallow reflex will also diminish, causing choking if food or drink is forced upon the patient.” The way this looks to caregivers, Lowe says, is that “patients stop asking for food or drink and will decline it when offered. If you ask the person if they’re hungry, they’ll say they aren’t.” Favorite foods may no longer taste palatable. Even when patients express a desire for something to eat, they may reach satiety quickly and feel discomfort if they attempt to eat more. Pushing food at this point can be dangerous. “The most significant dangers are aspiration and choking,” Lowe says. “Aspiration, when food or drink is inhaled into the lungs, can lead to lung inflammation or pneumonia, and the patient can experience distressing shortness of breath and coughing, and it can lead to death. Choking, when food gets stuck in the airway, can lead to an uncomfortable death very quickly. For both of these reasons, even if someone is eating for comfort, we recommend going slowly and not overpushing food and taking a break if the person is coughing, which suggests that they’re aspirating.” Coming to Terms With Loss of Appetite For families that have spent months or years encouraging a loved one to eat in hopes of extending their life and maintaining strength, reaching this terminal stage can be stressful and anxiety-producing. According to Lowe, “There’s a prevailing narrative in our culture that you have to eat to get stronger. This doesn’t recognize the reality that decreased oral intake is a natural part of the dying process. It is often very difficult for families to accept that their loved ones are not eating. For many of us, feeding someone else or providing them food is a way of showing them love. And when they’re not receiving that, it can feel like rejection. Accepting that the person is not going to eat or drink as much is also closely linked with accepting that they’re dying, which is a hard reality to face.” Bahti says, “Another worry families have is that their loved one is ‘starving to death’ and that this is painful.” In addition to providing education on how hunger sensations are naturally suppressed as the body shuts down, she likes to remind caregivers that their family members are “not dying because they are not eating. They are not eating because they are dying.” Cynthia Royals, MSW, LCSW, a social worker with University of North Carolina Hospice, points out that “food can be important to cultural celebrations and holidays, as well as family traditions and beliefs. These can impact the meaning food has for patients and their loved ones.” A family that believes certain foods have curative properties, for example, may find it hard to resist pushing food; another with religious traditions rooted in faith that God can provide miraculous healing may worry that not encouraging food suggests a lack of trust in God, which may undermine prayers for a miracle. Families faced with decisions about whether to discontinue tube feedings for a family member for whom this intervention is no longer helpful may feel they are in a no-win situation. Continuing tube feeding could cause discomfort and contradict medical advice; discontinuing may feel like giving up or may be accompanied by the mistaken belief that they are causing a loved one’s death. Changes in appetite can be difficult for patients to accept as well. “Patients who no longer have an appetite,” Lowe says, “may feel disappointed and like they’re failing their family and health care team because they can’t meet the demands to eat more. They may feel immense guilt, like it’s their own fault, when it’s their disease process and the limitations of the body.” Bahti has known patients who “attempted to eat despite their discomfort” in order to please their families or avoid what geriatric dietitian Katie Dodd, MS, RDN, LD, refers to as a “food fight” in which food becomes fraught with tension related to pressures for a dying patient to eat when they are not hungry.7 In Royals’ experience, “it’s also common to have a family member who takes a stand against encouraging a patient to eat in the interest of safety and another who worries the patient is being starved.” Providing Education, Care Planning, and Support Royals says it’s a good idea to provide education about appetite loss ahead of time. “On my initial visit with a patient and their family, I facilitate a discussion about goals of care, including advance directives like living wills. When the conversation turns to a decrease or cessation of food intake or aspiration risks at the end of life, we often talk about what the dying process might look like. This lets everyone hear the patient’s thoughts, if they are able to communicate them, and clarifies their goals of care. If a patient’s goal is to have the ‘most peaceful experience I can at end of life,’ we discuss what that means if they start having difficulty eating or are at risk of aspiration or choking.” This kind of education and discussion not only lowers the potential that families will be blindsided when a loved one no longer wants food but also can provide reassurances for families who are second-guessing themselves. “I find that when families and caregivers remember hearing their loved one state their goals ahead of time, there are often moments of ‘ah, yes, we did talk about this. They did say they wanted to focus on peace and comfort.’” When talking about these issues, Bahti suggests that practitioners use language that is clear, comprehensible, and sensitive to the possibility that too much medical jargon may be confusing when people are already overwhelmed. She has found it helpful to use stories, metaphors, or analogies to make a point. “When a patient is close to the end of life, I might talk about what it feels like after overdoing it at an all-you-can-eat buffet. You’re just not hungry, and the idea of eating more is a nonstarter. Your stomach has sent the message, ‘Don’t send anything else down here or I’ll send it back up!’ Then, imagine someone trying to get you to eat.” According to Royals, these conversations often evoke intense thoughts, emotions, and beliefs. “Acknowledging and normalizing what people are feeling at this time is incredibly important. Being a caregiver is stressful, exhausting, and at times confusing. When a loved one is nearing death, all of the tasks of caregiving as well as underlying emotions can increase in intensity. It’s normal for loved ones to question if they are doing the right thing.” She suggests medical staff involve counseling professionals such as social workers and chaplains. “A core part of the social worker’s role is to provide listening, empathy, and supportive counseling for family members to verbalize, process, and gain insight into what they are feeling and thinking, while gently providing education and reassurances that changes like cessation of food and eventually fluids are natural parts of the dying process.” Lowe agrees and adds that there may be roles for other professionals, such as speech therapists, dietitians, or nutritionists. “For patients such as those with dementia who are no longer able to swallow safely but who may derive some benefit from limited nutrition, speech therapists can work with the patient and family to identify ways to modify food or how to eat in order to allow the patient to safely have more intake.” Finding New Ways of Expressing Care • ensuring good mouth care; • offering water or swabbing to moisten the mouth before eating; • providing a relaxed and unhurried eating environment; • offering favorite foods in small amounts; • avoiding unnecessary dietary restrictions to increase pleasure; • offering soft foods such as pudding, ice cream, and soups as they are easier to swallow; and • avoiding strong odors and heavy spices. In addition, Lowe says, “It may be helpful to offer other suggestions on how to show we care. Discuss with the family alternative activities that would be meaningful to the patient, even if it’s just sitting spending time with each other. I’ve seen some families shift their focus to offering the love and intimacy of personal care, like washing and styling the patient’s hair, or massaging lotion into the patient’s feet. It’s very natural to focus on food and drink, but some families seem much more comfortable focusing instead on expressions of love such as hand massage or skin care.” Bahti agrees and suggests other activities such as “going through photo albums, reminiscing, or listening to favorite music together. When we can no longer nourish the body,” she says, “we can still nourish the soul or spirit.” (Some families may prefer other language, such as “nourish the relationship,” “heart,” or “inner self.”) While helping caregivers change their focus, geriatric professionals may be able to identify underlying values that are driving impulses to push food, such as a desire to express love or gratitude, protectiveness, or wanting to do a good job. These values can then be affirmed and translated into new behaviors such as life review, singing patients a song, or rubbing lotion on their hands. Accepting that poor appetite is part of a natural process can be difficult for medical professionals as well. “Most of the time in medicine,” Lowe observes, “our focus is on cure and recovery, and often times that includes encouraging someone to push themselves, whether that’s to participate in rehab or therapy, take their medicine, or try to eat more. Once the goals shift and we accept that cure and recovery are no longer an option, it can feel very unnatural to stop doing the things we had done before.” “This can be compounded by being confronted with the grief, and sometimes anger, of patients and families coming to terms with the situation. It’s natural to second guess yourself, particularly when a caregiver is pushing back on the reality of their loved one’s situation.” Often the clinical picture is not cut and dried. What about a patient with advanced heart disease who has had a stroke that negatively affects the ability to swallow? To what extent does either of these conditions contribute to lack of appetite? Does it make more sense to recommend a feeding tube or hospice care? Some professionals may even work in settings that exert pressures to recommend aggressive and/or invasive interventions to forestall weight loss even when contraindicated by terminal illness. For example, a practitioner working in a skilled nursing facility that is hypervigilant about regulations viewing weight loss in residents as potentially indicative of substandard care may feel conscious or unconscious pressure to recommend feeding tubes. It’s easy for medical staff to second-guess themselves when families are in distress and looking to them for hope. Some may be serving patients they’ve known for long periods of time and for whom they have genuine affection. Lowe encourages professionals to support each other and not feel like they have to go it alone. “Sometimes,” he says, “just reaching out to a colleague and explaining the clinical situation out loud can help clarify things and reaffirm the treatment decisions.” — Scott Janssen, MA, MSW, LCSW, is a social worker at University of North Carolina Hospice. He frequently writes about transpersonal experiences at the end of life, and is a member of the National Hospice and Palliative Care Organization’s Trauma-Informed Care Work Group.
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