Hospice is a special form of comprehensive care provided to people who have a serious, progressive illness, in which the emphasis is on care, not cure. The primary goals of hospice are to provide pain and symptom control as well as physical, emotional, and spiritual support services. As stated by the National Hospice Organization's Standards of Care, "Hospice exists to provide support and care for persons in the last phases of incurable disease so that they might live as fully and comfortably as possible. Hospice neither hastens nor postpones death; it exists in the hope and belief that, through appropriate care and the promotion of a caring community sensitive to their needs, patients and their families may be free to attain a degree of mental and spiritual preparation for death that is satisfactory to them."1 Hospice plans of care always focus on the quality of life, not its length.
Hospice patients and their families receive a range of services and need education about their appropriate and effective use. Needless to say, end-of-life care can place hospice patients and their families under considerable stress especially because there seems to be so many things that they cannot do. However, the quality of the hospice experience for all concerned can be enhanced by what can be done during the patient's remaining days. End-of-life nutrition may appear to be a contradiction in terms, but the "breaking of bread" and the sharing of the experience in whatever way possible can offer patients and their loved ones an opportunity to give and to receive, to nurture and be nurtured.
The Meaning of Food
There is a powerful symbolic meaning attached to eating and drinking; both literally and figuratively -- food is life. Food has strong emotional and symbolic overtones that include maternal nurturing, as well as religious, cultural, and social values.2 "The simple act of offering to allay hunger and to slake the thirst of a dying person is deemed, across time and cultures, to be not only right but good."3 Feeding is more than offering nutrients to sustain life; it is to nourish and to show care for another; it is one of the most basic acts of healing.
The intake of food and drink in the context of a dying patient can become the center of a struggle that may never resolve itself but will continue to be a hardship for everyone. When patients are allowed to determine their dietary intake, however, they experience relief and a sense of autonomy by taking control of their lives, although their days may be short. Among the issues that family members must address is the need to resolve for themselves the symbolic meaning of eating and drinking in the context of medical means to achieve nutrition and hydration.
"Dying of a progressive inability to eat is probably one of the most natural and physiologically gentle ways to expire," notes Ira Byock, M.D., President of the American Academy of Hospice and Palliative Medicine. In his role as a hospice physician, Dr. Byock finds that the issue of nutrition and hydration at the end of life is one of the most important concerns of patients, families, and other professional caregivers.4
Dehydration and Starvation
For those with advanced illness, hunger is rarely, if ever, a source of discomfort. However, a patient will be affected by dehydration long before suffering any ill effects from the lack of nutritional support.5 The general impression among hospice clinicians is that starvation and dehydration do not contribute to suffering among the dying and might actually contribute to a comfortable passage from life.6 The medical evidence is quite clear that dehydration in the end stage of a terminal illness is a very natural and compassionate way to die.5 In fact, physiologically, dehydration in the dying patient can reduce rather than increase pain and other complications, for example, less fluid in the lungs and therefore less pulmonary congestion, makes breathing easier. Published studies of healthy volunteers report that total fasting causes hunger for less than 24 hours. Ketonemia occurs and is associated with relief of hunger and an accompanying mild euphoria.6
Hospice patients who are dehydrated are regularly asked if they are thirsty; most answer no. Those who say yes are consistently and fully relieved by having their mouth and throat moistened. A recent study found that patients terminally ill with cancer generally did not experience hunger and those who did, needed only small amounts of food for alleviation. Complaints of thirst and dry mouth were relieved with mouth care and sips of liquids far less than that needed to prevent dehydration.7
In contrast, the general impression among the public and non-hospice medical professionals is that starvation and dehydration are terrible ways to die. In fact, it is one of the often cited reasons for the initiation and continuation of artificial hydration and/or nutrition (see The Artificial Hydration and Nutrition Debate). A review of the medical literature provides support for the fact that virtually any patient with illness can be assured of dying - comfortably, without any additional physical distress - within one to two weeks simply by refusing to eat or drink.6
Among the terminally ill, the risk of uncorrected malnutrition and dehydration is small6 and the literature is consistent on two points: 1) rarely does fasting cause any discomfort beyond occasional and transient hunger and 2) symptoms referable to dehydration are few -- mostly dry oral and pharyngeal mucous membranes - and are readily relieved by simple measures.6
Improving nutritional intake, when freely chosen by the patient, increases the patient's sense of well-being and improves morale. The recognition that patients with far-advanced illness have always had control over the timing of their demise can enable the focus of discussion and intervention to remain fixed on the goals of comfort and quality of life.6
The Artificial Hydration And Nutrition Debate
The decision to provide or forego artificial hydration and nutrition within the context of hospice care is, for many, a difficult decision to make. Governmental, legal, and health professional groups have established positions on the right of patients and families to refuse "heroic" measures, such as cardiopulmonary resuscitation and assisted ventilation. The guidelines for the use of artificial hydration and nutrition are less clear, perhaps because it is less "heroic" more subtle. Respecting the patients wishes, however, continues to be the standard of care and virtually all hospice clinicians can remember a patient who had "lost the will to live" and recognized that continued eating and drinking was having an undesired, life-prolonging effect.
Patient refusal of nutrition and hydration overall is a position to be respected, as should the decision to withdraw nutrition and hydration support. From most moral, ethical, medical, and religious viewpoints, there is no difference between withholding and withdrawing nutrition and hydration support. Emotionally, however, there is a world of difference.
Regardless, the debate over artificial hydration and nutrition is a very personal one within the life and death of the patient and family. Professionals can be especially helpful by providing information and facilitating discussion. They, themselves, may have very strong feelings about this issue but should not allow their personal opinion to inappropriately interfere. They are there to inform, facilitate, and comfort the guiding principles in caring for hospice patients and their families.
for the Soul
My sister and I have wonderful memories of spending summer days with our grandmother -- our abuelita. I remember running through pastures, climbing trees, and wading in the pond between her house and the dairy.
Around the lunch hour, my abuelita would call us into the house. She was a tenderhearted person who believed her responsibility as our grandmother was to be loving and caring but also to awaken us to our cultural heritage. Her favorite room was the kitchen - her cocina1, where she would ask us to help prepare lunch, the comida. The warm and loving atmosphere blended with the spicy aromas, as she told us cuentos - stories about her youth. I now realize that the cooking was also part of the cultural heritage lesson she taught us.
My abuelita's favorite Mexican dish was carne guisada. After she cubed the meat, she then prepared it for browning, a job she would allow one of us to do. The meat had to be browned slowly to extract the beef juices for flavor and nourishment. While one of us browned the meat, the other helped her gather the ingredients - tomatoes, garlic, cumin seeds, whole black pepper, cilantro, and toasted chile - which she used for her spice concoction. She then rhythmically and energetically ground these ingredients in her molcajete, the secret to producing the rich flavors of my abuelita's Mexican dishes.
At 83, she was diagnosed with lung cancer and not much longer thereafter, she fell and broke her leg, making her totally bedridden. She must have known that the end was near, because she became very depressed. Although she came to live with me where she was surrounded by family members, her depression deepened and she became withdrawn. In an effort we hoped would bring her some happiness, we started gathering our families together on the weekends for the comida.
After a few weekends, my abuelita became more interested in these gatherings and insisted on being in the kitchen, even though she was often very weak and tired. Sitting in her wheelchair, she watched closely but did not interrupt as we prepared carne guisada, arroz, frijoles, pico de gallo, and empanadas de calabaza. Although she ate only a few bites, each mouthful sustained her during her last few months. These family gatherings also nourished her soul - the meals gave her back the warmth and love that my sister and I savored when we spent summers with her. Today, I can still see the joy and pride of our heritage sparkling in her eyes.
The American Dietetic Association has developed a list of issues to consider when providing nutrition support to the terminally ill patient and has stated that the patient's informed preference for the level of nutrition intervention is paramount.2 Within this framework, evaluation of the patient's medical status is an ongoing process in which continuous good communication is essential among the interdisciplinary health care team members, as well as with the patient and family. As one hospice professional comments, " [a] trusting and supportive relationship among staff, patient, and family members is centrally important in the management of nutrition, which involves goals much more important than the normalization of food and fluid intake. Education of patients and families is vital to developing a nutritional care plan that reflects both the patient's goals and his or her physical limitations."3
An accurate evaluation of nutritional status also depends on obtaining specific data. A diet history should disclose recent changes in intake, food preferences, dislikes, allergies, or intolerances. Specific cultural, socioeconomic, and religious factors might dictate diet modifications and explain particular attitudes toward food. Based on this information, the specifics of the nutritional plan are developed and modified, including input from all participants in the process.
Developing the Plan
The following is general information for the physician assistant to use when working with hospice patients and their families on nutritional care. Specific recommendations for patients and families are provided separately as a teaching tool. Caring for a terminally ill relative or friend can be stressful and emotionally draining. Thus, nutritional information may need to be repeated or reinforced, or broken up into several sessions. Always keep in mind that hospice care is a team effort, and in the development and modification of a nutrition plan, a variety of other professionals, notably dietitians, will be valuable resources.
Loss of appetite is one of the earliest symptoms of being ill, and to those who try to help the sick, one of the most distressing. The onset of decreased appetite is a time to look at how any dietary plan is modified. As with the other aspects of the patient's care, anticipatory planning and guidance is important.-Clearly, it is necessary to feed sick people differently than well people but it is also possible to have food bring comfort and enjoyment even to those in advanced stages of illness.
Mama was the pillar of the family giving my brother and me all the support and love we needed. My father died when I was very young, so Mama provided for the family by working in the school's cafeteria.
Everyone's favorite days were the Sundays of summer. We would go to the early church service and afterward, Uncle Bob, Aunt Cleo, and their three children would return home with us. Mama and Aunt Cleo would begin preparing the most delicious foods - barbecued beef ribs, smoked sausage, collard greens, fried okra, macaroni and cheese, cornbread, and peach cobbler. After lunch, all of the cousins would go out into the backyard to play football. Uncle Bob, Aunt Cleo, and Mama always sat on the porch and watched, a summer tradition that we enjoyed for many years.
Mama was diagnosed with breast cancer about five years ago. She was given chemotherapy and her cancer went into remission. Ten months ago, she began having back pain, which she attributed to working too hard in her garden. Eventually she saw Dr. Phillips, our family physician, who quickly referred her to Dr. James, her oncologist. After a few days, we received the most devastating news - the cancer had not only returned, it had spread. We knew she would have to restart chemotherapy; we also knew she would never be the same.
After church, we still returned to Mama's and worked together to prepare our Sunday lunch, a tradition that was very important to her. Her appetite and health quickly dwindled, but she always joined us and ate small bite-sized pieces of our favorite foods - smoked sausage, beef ribs, grits, black-eyed peas, and peach cobbler. After lunch, as always, all the cousins and grandchildren piled out into the backyard for a game of football. When she had the strength, Mama would watch us from the back porch. I often sat with her, holding her hand. By her gentle smile, I knew she was enjoying and reminiscing about our family's summer barbecues. It is a special tradition that she began, and one that, in her memory, we will continue.
Symptoms that Control Oral Intake
It is critical that the unpleasant symptoms that Interfere with nutritional intake be eliminated or minimized and, for most hospice patients, this is the relief of pain. The ancillary benefit is that adequate analgesia also significantly decreases other symptoms such as fear, depression, fatigue, and anorexia.
Many patients have a disruption in their patterns of elimination, usually constipation, that is related to medications, notably narcotic analgesics, decreased activity and diminished intake. Constipation needs to be prevented, if at all possible, with the use of stool softeners and laxatives. Diarrhea is uncommon, and a lactose-free diet sometimes corrects any food intolerance, while enzyme replacement can be used in enzyme deficiency malabsorption syndromes.
Nausea and vomiting are among the most distressing symptoms for the patient (see Patient Education Information). Contributing factors include disease, drugs, emotions, and the environment. Frequent small meals and the regular administration of antiemetics, such as prochlorperazine, either before meals or on an "every four to six hours" schedule, are often effective.
The most frequently neglected part of the gastrointestinal tract is the oral cavity. Dry mouth, stomatitis, and infection are particulary disturbing and can be readily remedied by cleansing the oral cavity and frequently lubricating the mucous membranes.
When I called my father's doctor, I was barely able to keep from crying - Dad's condition was rapidly going downhill. Thank goodness he was not in any pain but he was depressed and withdrawn, and hardly ever came out of his bedroom. I spoke with his doctor and talked about his condition; I knew that Dad was dying and, in fact, I thought I was managing quite well. Yet, the part of all of this that I was having great difficulty with was that Dad had practically stopped eating and was getting weaker before my very eyes. "He never comes to the dinner table anymore and I try to fix things that I think he'll like - pasta, salad, and crusty bread," I told Dr. Romano. "It almost breaks my heart to watch him just push his food around on his plate. I feel that giving him food is the only thing I can do to help him now."
The dinner hour in my family had always been lively when I was growing up, one of five children, with the table laden with my mother's pasta dishes, homemade Italian bread, and salad with lettuce and tomatoes from the garden. When she died seven years ago, Dad seemed lost. I invited - insisted - that he come live with me and Robert, my husband. "Please tell me if there is anything I can do," I pleaded with Dr. Romano. He had an idea.
"Does your dad like wine?" I answered yes. "Then, why don't you give him a small glass of his favorite wine about an hour before dinner. It may perk him up; it certainly can't hurt him. Let me know what happens."
I did not call Dr. Romano back for the next couple of days. But when I did call, he said that he could hear the relief in my voice. "I can't believe it," I said. "We asked him to join us for an aperitivo in the garden before dinner, he seemed reluctant at first but when we got him settled in the chair, and after a few sips of wine, he did perk up. We chatted briefly about the weather, the kids, the latest soccer matches. He even came to the dinner table, ate a couple of bites of spaghetti alla carbonara and un filoncino di panne, then he held out his glass for a refill."
Dad died about two weeks later, quietly, at home. I was sitting by his side, holding his hand. Before he died, he had joined Robert and me for some sips of wine several more times. He seemed more peaceful and at rest. Now, before I take my first sip of wine with dinner, I raise my glass up and nod my head. "Dad, salute."
Modifications to Encourage Oral Intake
Once patients are able to achieve a satisfactory level of comfort or relief from pain and other symptoms, dietary changes can be made to enable oral intake. Different types of food can be offered depending on which symptoms persist, such as nausea and vomiting. A diet that is planned to meet individual needs will contribute much to motivating the patient to enjoy the remaining days of his or her life.3
Patients often have little control over much of their care and should be able to make decisions regarding the time, amount, and kind of food that they eat. Changes within the environment can enhance the pleasure of dining, especially if the room in which meals are taken is free of noise and odor. Hospice programs generally encourage families to be present during meals, whether assisting in feeding, eating a meal themselves, or just keeping the patient company.
When Death is Imminent
As the dying process continues and the patient is less and less aware of the surroundings, there usually is less interest in food, and the focus shifts to hydration. Generally, families are more concerned about patient comfort than length of life but they need reassurance that comfort measures can be used at this time.
Caring for hospice patients and their families can be a very rewarding professional - and personal - experience. Providing accurate and helpful information about nutrition can make an important difference in the quality of life for these individuals. It also provides an opportunity to work closely with other health care professionals. Clearly, it takes time, thoughtfulness, patience, and the willingness to listen. Be open to patients and families - they will show you the way; and you can help to make it better for them.
1. Standards of a Hospice Program of Care. Arlington, Virginia. National Hospice Organization 1993.
2. Mishkin B. Withholding and Withdrawing Nutrition Support: Advance Planning for Hard Choices. Nutr Clin Pract 1986;1:50-52.
3. Lynn J (ed). By No Extraordinary Means: the Choice to Forgo Life-Sustaining Food and Water. Bloomington, Indiana, Indiana University Press, 1989.
4. Byock I. Dying Well: the Prospect for Growth at the End of Life. New York, Riverhead Books, 1997.
5. Dunn H. Hard Choices for Loving People. Herndon, Virginia, A & A Publishers, Inc., 1994.
6. Byock I. Patient Refusal of Nutrition and Hydration: Walking the Ever-Finer Line. Am J Hospice & Palliative Care 1995;12(2):8-13.
7. McCann RM, Hall WJ, Groth-Juncker A. Comfort Care for Terminally Ill Patients: the Appropriate Use of Nutrition and Hydration. JAMA 1994;272:1263-1266.
Patient Education Information References
Hailer J. What to Eat When You Don't Feel Like Eating. Hantsport, Nova Scotia, Lancelot Press Limited, 1994.
Eating Hints for Cancer Patients. Bethesda, Maryland. National Institutes of Health. National Cancer Institute, 1997.
Eating Well During Cancer Treatment. Atlanta, Georgia, American Cancer Society, 1998.
Patient Guidelines for Taking Care of Yourself. Sharon, Connecticut, Sharon Hospital, 1998.
Patient Education Information
There are many parts of the nutritional plan that can be modified, depending on how you are feeling. The following are recommendations for how to manage specific complaints and to try to find out what works best for you. Some tips may be helpful at one time but not at another time. What's most important to remember is that you always have choices.
Loss of Appetite
Nausea & Vomiting
Altered Taste and Smell
How Your Family Can Help
Copyright © 1998 PHYSICIAN ASSISTANT FOUNDATION
To locate hospices in your community, the Hospice Association of America and National Hospice Organization both maintain locators on their Web pages, www.nahc.org and www.nho.org, respectively. The National Hospice Organization offers the Hospice Helpline at 800/658-8898. the American Hospice Foundation (AHF), a national non-profit organization advancing the hospice concept of care through public outreach, can be found on the Internet at www.americanhospice.org.
Advisory Group Members Contributing To This Piece
Elizabeth A. Coyte, PA-C, Redfield, IA
Kae G. Dakin, MGA, Alexandria, VA
Patricia R. Fuchs, RD, Chicago, IL
Patrick E. Killeen, PA-C, Danbury, CT
Muriel Fay Siadak, PA-C, Seattle, WA
Greg P. Thomas, PA-C, Alexandria, VA
Sarah F. Zarbock, PA-C, Lakeville, CT