Artificial Nutrition and Hydration at the End of Life
Shirley Ann Smith
This article is designed for nurses and other health care professionals who care for and educate patients regarding artificial nutrition and hydration at the end of life. The multiple choice examination that follows is designed to test your achievement of the following educational objectives. After reading this article, you will be able to:
1. Describe distressful complications commonly seen when artificial nutrition and hydration are used with dying patients.
2. Explain why patients with end-stage incurable disease have different nutrition and hydration needs than patients with potential for recovery.
3. Discuss the ethical and legal opinions regarding artificially provided nutrition and hydration at the end of life.
Advanced technology has allowed life support, including artificially provided nutrition and hydration, to become a common health care practice, while simultaneously creating some very controversial ethical concerns. A major dilemma is determining when technologies stop benefiting and become harmful to patients (Callahan, 1993). In providing artificial nutrition and hydration (ANH) to dying patients, nurses must participate in identifying treatment goals and methods. Examining the potential for benefit versus harm is critically important. Many providers and patients believe that dehydration is very uncomfortable and that it is unethical to let someone “starve to death.” Facts often contradict this assumption. Therefore, this ethical issue generates considerable confusion, discomfort, and controversy. Literature relating ANH to comfort, distressful side effects, and longevity in patients with end-stage irreversible illnesses will be examined, and a baseline for decision making for health care providers, patients, and families will be described.
In this article, the population is defined as patients who are at the end of life due to advanced incurable chronic disease (for example, heart failure, pulmonary failure, cancer, kidney failure, and advanced dementia). These patients are in a state of progressive decline and have a poor prognosis (weeks or several months, not years). Other populations of patients, such as those in a persistent vegetative state, prolonged coma, and accident victims, may require the consideration of other factors and different approaches.
ANH and Outcome Parameters
To uphold ethical principles, clinicians must understand the dying process and the potential benefits and burdens of available interventions. A problem exists in that medical, nursing, and other professional schools have included very little, if any, instruction on these topics (Ferrell, Virani, & Grant, 1999; Field & Cassel, 1997; Rabow, McPhee, Fair, & Hardie, 1999). Since most health care providers are not familiar with what happens when a patient is near death and may have false perceptions (especially related to nutrition and hydration), it is important to review the literature related to this area before attempting to apply the ethical principles in clinical situations.
Dehydration is often assumed to be an uncomfortable state. On the contrary, a large majority of hospice nurses believe that dehydration is not painful and that artificially provided hydration would produce distressful symptoms more often than any benefit for dying patients (Andrews & Levine, 1989; Andrews et al., 1993; McCann, Hall, & Groth-Juncker, 1994; Miller & Albright, 1989; Musgrave, 1990; Rousseau, 1991; Sullivan, 1993; Vullo-Navich et al., 1998). The hospice nurses’ experience is that patients rarely complain of thirst and that aggressive nutritional support is more harmful than beneficial to patients at the end of life. The general consensus is that patients should be offered food and fluid continually, but that their refusal of food and fluids is a rational decision based on their sense that it is all that they can handle without untoward side effects. The experience of a physician (Cox, 1987) who has observed more than 4,000 hospice patients coincides with the hospice nurses.
Another assumption is that dehydration is associated with abnormal electrolytes and results in discomfort. This too, has not been found to be the case with most terminally ill patients who gradually dehydrate over a long period of time, with proportionate decrease of nutrient and fluid intake. Rather, numerous studies report that dying patients’ electrolytes stay in predominantly normal ranges, and even when electrolytes are abnormal, most patients remain comfortable (Burge, 1993; Meares, 1994; Oliver, 1984; Vullo-Navich et al., 1998; Waller, Hershkowitz, & Adusky, 1994). Zerwekh (1997) suggests that the assumption that “dehydration = abnormal electrolytes = discomfort” comes as a result of previously held beliefs based on older studies of healthy people deprived of fluids.
One theory that explains increased comfort is that decreased nutritional intake stimulates an increased production of endorphins, and that dehydration leads to increased dynorphin levels. Since endorphins and dynorphins are natural analgesics, they may increase comfort level. Another theory is that inadequate caloric intake resulting from anorexia results in ketoacidosis, which takes away the feeling of hunger and results in further analgesia and anesthesia (Printz, 1988, 1992).
There is a role for low-volume parenteral hydration to increase comfort for patients who manifest symptoms of opioid toxicity (agitated delirium, myoclonus, seizures) (Bruera et al., 1995; Bruera, Belzile, Watanabe, & Fainsinger, 1996; Fainsinger, 1995; Fainsinger & Bruera, 1995; Fainsinger & MacDonald, 1994; Fainsinger et al., 1992). In a retrospective study, Fainsinger and colleagues (1991) found that 10% of their end-stage patients suffered agitated delirium requiring sedation in the last week of life. In a subsequent study they found that number reduced to 3%. They attribute the decrease to their practice of hypodermoclysis, administering fluids through a needle placed in the subcutaneous tissues, for rehydration, switching opioids earlier when toxicity developed, and the use of less-sedating treatments, such as haloperidol, for delirium. In a 1992 study, Fainsinger and colleagues concluded that hypodermoclysis is the treatment mode of choice since it is inexpensive, has few complications, and can be administered at home. They also determined that if the volume was kept around 1,000 ml/day, the patients did not develop symptoms of fluid overload.
Several studies document that IV therapy can produce distressing and life-threatening symptoms in patients who have progressive end-stage disease with multi-system failure (House, 1992; Smith, 1995 & 1997; Sullivan, 1993; Zerwekh, 1983 & 1997). Rather than being physiologically helpful, ANH can produce distressful symptoms because the physiologic and metabolic processes of the body are no longer efficient. These processes and resulting symptoms can be summarized as follows:
* Fluid overload inhibits release of antidiuretic hormone (ADH), that may result in increased urinary output, possible incontinence, or possible need for catheterization.
* Increased extracellular fluid (ECF) causes peripheral edema that may result in decreased mobility, increased skin breakdown, and distressful pressure.
* Increased ECF may cause pulmonary edema and congestive heart failure, resulting in an increase of respiratory secretions, coughing, and dyspnea.
* Increased ECF may cause increased gastrointestinal secretions, ascites, pain, nausea, and vomiting.
* Cerebral edema may result in mental disturbance, convulsions, coma, twitching, or hyperirritability.
The well-known changes in physiologic parameters in patients with end-stage cancer offer some explanation of the lack of potential benefit from ANH in terminally ill patients. Healthy cells are replaced by cancer cells, which lose the growth regulatory mechanism, and produce massive growths that suppress normal organ function. These abnormal cells also have exponential genetic instability; they divide very rapidly rather than proceeding on to mature differentiation. Therefore, despite their number, they cannot carry on normal cell function. Other end-stage cancer complications include paraneoplastic syndromes and anaerobic glycolysis. Paraneoplastic syndromes are numerous, but basically are the result of tumor cells performing functions irrationally and inappropriately. One example is when oat cell carcinoma cells produce ADH, resulting in syndrome of inappropriate ADH (SIADH), manifested by severe pleural effusions. Anaerobic glycolysis is an inefficient metabolic process that may result in an energy deficit and body wasting.
Many health care providers and the public at large believe that withholding ANH hastens death or makes the patient uncomfortable during the dying process. There are clinical trials that provide evidence that patients without IV support live as long as those who do have IV support (Aranha, Folk, & Greenlee, 1981; Baines, Oliver, & Carter, 1985; Burge, King, & Willison, 1990; Krebs & Goplerud, 1983; Osteen, Guyton, & Steele, 1980; Smith & Veglia, 1987). This evidence should be shared with the patient and family and, subsequently, their opinions honored.
A number of retrospective and observational studies of patients with advanced dementia conclude that there is no evidence that tube feedings prolong life, improve functional status, improve comfort, or reduce aspiration pneumonia or other infections (Gillick, 2000; Finucane, Christmas, & Travis, 1999; Finucane & Bynum, 1996; Kaw & Sekas, 1994; Mitchell et al., 1997; Mitchell et al., 1998; Quill, 1989). Gillick (2000, p. 208) reminds us, however, that there is “just enough uncertainty associated with tube feeding, just enough chance that a tube might, in some unanticipated situations, prolong life or provide comfort in patients with dementia, that family members should be able to request a feeding tube if they believe it is truly what the patient would have wanted.”
Physiologic Processes of End-Stage Disease
It is important for clinicians to understand the physiologic processes that occur at the end of life. While dehydration commonly occurs at the end of life, it is thought to be different in type than the hyponatremic and hypernatremic dehydration seen in other patients (Billings, 1985). In hyponatremic dehydration (or predominantly sodium loss), salt and fluid loss leads to circulatory failure caused by volume depletion. Patients also may experience postural hypotension, lethargy, stupor, coma, dry mouth, and decreased sweat.
Hypernatremic dehydration (or predominantly water loss) is also a loss of salt and water with no water replacement. However, the patient continues to ingest sodium via foods or medications. This type of dehydration results from disproportionate loss of water (for example, osmotic diuresis or fluid loss from burns). Progressive water loss will lead to mental status changes, obtundance, and coma.
Billings (1985) suggests the third type of dehydration, a mixed salt and water depletion or isotonic (eunatremic) dehydration, frequently occurs in patients with end-stage irreversible illness. It occurs gradually, over a longer period of time, and with a proportionate decrease in nutrients and water. Patients eventually become dehydrated, but they are neither hypernatremic nor hyponatremic. Painful or distressing symptoms may not occur in dying patients because of this type of dehydration.
It is important to remember that patients with incurable progressive chronic disease almost always have more than one body system in failure. Given multi-system failure, it is obvious that metabolism and fluid and electrolyte balance would be negatively affected. There is also evidence that multi-system failure that persists for more than a day or so is indicative of a poor prognosis for survival, regardless of diagnosis (Knaus, Draper, Wagner, & Zimmerman, 1985). These facts are important to remember when making treatment decisions.
When considering administering ANH to dying patients, several nutritional factors warrant special consideration. Normal digestion, hydrolysis of nutrients to smaller molecules so they can be absorbed, is a process that begins with stomach acid and pepsin. Pancreatic enzymes such as lipase, amylase, and trypsin act to continue the process. Fat absorption cannot occur without the breakdown that is facilitated by bile salts produced by the liver. Thus, invasive cancers affecting the stomach, liver, or pancreas will interfere with digestion and absorption of nutrients.
Absorption in the small intestine is dependent on motility; both the gross motility of the intestine itself and the motility of individual villi. Surgical procedures, medications, and lack of physical activity on the part of the seriously ill patient can result in decreased motility of the intestines; sometimes to the point of paralytic ileus. In addition, chemotherapy (usually temporarily) and radiation therapy (usually permanently) denude the gastrointestinal villi, leading to malabsorption, diarrhea, nausea, and vomiting.
Five ethical principles frame any consideration of providing ANH to patients at the end of life. These are: beneficence, nonmaleficence, autonomy, justice, and virtue. In developing this overview, writings by Burck (1996), Gallagher-Allred and Amenta (1993), and Mayo (1996) were reviewed and summarized.
Beneficence implies doing good, or acting in the best interest of the patient. Under this principle, nurses act in the physical realm by positively and effectively intervening to treat or control disease processes, providing measures to prolong life, and relieving pain and other distressing symptoms. Interventions to address all aspects of spiritual, psychosocial, and emotional distresses identified by patients also fall under the area of beneficence. When patients are incurably ill, beneficence takes on new meaning. If a patient is no longer responding to medical treatments or if life-prolonging measures are only adding to suffering, the principle of beneficence allows that those therapies may no longer be appropriate. If any treatment, including ANH, does not benefit the patient, it can be considered futile. In cases in which the potential benefits of ANH are unknown, it is appropriate to proceed with a trial of treatment if the outcome parameters are established prior to beginning the treatment. The goals of treatment should be understandable and meaningful to the patient, such as: Do you feel stronger? Do you have less pain? Do you sleep better? Do you have less nausea? etc. A time frame should be set to measure the goals, and results that show no improvement or increased distress indicate the trial should end.
Nonmaleficence means avoiding harm to patients in the course of care. Judging whether a treatment has more benefit than burden is a critical decision, not only from a medical perspective, but from the patient and family point of view as well. A treatment, which, under normal circumstances would be beneficial, can become burdensome and without benefit at the end of life when multiple systems are failing. Failing to stop treatments when their burdens begin to exceed their benefits violates the principle of nonmaleficence (Storey & Knight, 1996). The principle of avoiding harm is particularly important for patients at the end of life, as most are frail, frightened, and vulnerable. Sometimes a treatment may be continued purely because the patient requests it; to not do so might imply lack of support and cause psychological harm.
While the principles of beneficence and nonmaleficence bear directly on how clinicians make decisions, autonomy establishes for patients the right to be informed and to be the final decision makers to give consent for or refuse proposed treatments. Clinicians acting ethically ascertain patients’ goals and values, and make sure they are fully informed about their disease, treatment options, and potential benefits or burdens of treatment options, before obtaining consent. Competent patients can make a decision regardless of any previous advance directive statements. When the patient is incompetent, the proxy decision maker should consider any written directives as they apply to the current situation.
According to Woodruff (1999), despite clinicians’ best efforts to enhance autonomy, some inequality will always exist. The relationship between patients and their professional caregivers is always biased in favor of the professionals because they are the ones who control what information is discussed and what options are offered. To avoid the bias, a partnership model of decision making is suggested, in which patients bring their values, priorities, and goals, and clinicians (in a nonjudgmental manner) bring their knowledge and experience of what options and supports are available.
The principle of distributive justice, or fair allocation of resources, may actually result in limiting patients’ autonomy if their desires impinge on the needs of other people. The big dichotomy is the common conflict that occurs when advancing individual patients’ needs consume funding and other resources and as a result diminishes the availability of health care for others. With rising health care costs, providing futile treatments simply because the patient or family requests them should be challenged from an ethical perspective. On the other hand, effective palliative care at the end of life should not be considered futile and should be funded.
A good clinician is defined by the ethical principle of virtue (Pelligrino, 1995). Several virtues are critical to the ethical delivery of health care. These include fidelity (honoring a trust relationship with the patient); effacement of self-interest (protecting the patient from exploitation or personal gain); compassion (exhibiting concern and empathy for the patient’s plight); intellectual honesty (knowing when to say “I do not know”); and prudence (deliberating on alternatives). Confidentiality, veracity, and professional integrity influence how all the other principles are put into practice in each individual patient scenario. Likewise, the beliefs and cultural background of the patient should be considered in decision making.
Ethical and Legal Guidelines
Providing ANH to dying patients continues to arouse controversy because of its attached symbolism, the expression of love and concern for the helpless (Micetich, Steinecker, & Thomasma, 1983; Steinbrook & Lo, 1988). McInerney (1992) presents the sociological viewpoint that food has symbolic meaning that transcends the physical benefits, suggesting that the power of the symbolism of food overrides rational thought. In a study of primary caregivers of terminally ill patients, Meares (1997) found that intake is seen as the major focus of nurturing, and therefore, lack of intake is emotionally painful. Being aware of
this symbolism should make us sensitive to our approach in educating patients and families. It should also remind us that nurses’ own perceptions and personal values should not guide decision making. In addition to appreciating the values of others, nurses must consider ethical and legal guidelines relating to providing ANH.
Numerous professional organizations have issued position statements on the use of ANH. These guidelines generally pertain to patients with terminal illness, those permanently unconscious, and those with permanent paralysis. In 1992, The American Dietetic Association (ADA, 1987) issued a position paper affirming the competent patient’s right to refuse medical treatment including ANH. Nutrition support is characterized no different than any other medical treatment, which may be withheld or withdrawn under certain circumstances. In fact, in the case of the terminally ill, the ADA document recognized that ANH can be futile and exacerbate the distress of dying.
In 1992, The American Nurses Association (ANA) issued an updated position paper on ANH. In this document, reduced appetite is viewed as a normal part of the dying process. However, the ANA distinguishes between food and water given by mouth (ordinary) from that which is artificially provided (extraordinary). Nurses need not feel obligated to engage in extraordinary measures when nonvolitional feeding is not necessary and could be inappropriate (ANA, 1992). When ANH is foregone (as when stopping any aggressive intervention), the nurse is reminded of the importance of continuing to provide care aimed at minimizing discomfort, promoting patient dignity, and providing support and education to family members.
The American Medical Association (AMA) has issued and refined statements declaring that physicians may cease or omit treatment, including ANH, for humane reasons and with informed consent (AMA, 1986). These actions are permissible in cases of irreversible coma, even if death is not imminent. The AMA considers ANH a medical treatment requiring the same scrutiny for appropriateness as other treatments. The physician is charged with weighing the benefits and burdens of treatment (as defined by the patient and family), relieving pain and suffering, and maintaining patient dignity.
The Society of Critical Care Medicine (SCCM, 1990) convened a task force of 37 interdisciplinary experts and issued a position paper on ethical issues in the critical care setting. Recognizing patient autonomy, this group affirms the right of terminal and nonterminal patients to authorize or reject treatment. In making the decision to withhold or withdraw ANH, quality of life and preservation of life are seen as equally important. No intrinsic moral differences between categories of treatment, such as CPR and providing nutrition and hydration, were distinguished. Five members of the task force wrote a dissent, which states, “Hydration and nutrition other than high technology total parenteral nutrition are key components of patient care and should not be equated with medical interventions” (SCCM, 1990, p. 1439). The authors of this dissenting opinion were mainly of the Jewish faith, which demonstrates how spirituality influences care decisions.
More recently, the American College of Physicians and the American Society of Internal Medicine issued a position paper which included the topic of voluntary refusal of food and fluids (Quill & Byock, 2000). Provided the patient is competent to make such decisions and after an appropriate psychological assessment to rule out depression, spiritual suffering, and careful assessment of motives, these two organizations propose that it is appropriate to allow a terminally ill patient to voluntarily stop eating and drinking.
The position of the American Academy of Neurology (AAN, 1989) regarding ethical treatment of patients in a persistent vegetative state (PVS) is consistent with other associations’ statements. Again, AAN labeled ANH a medical treatment, which may be withheld or withdrawn in PVS. Decisions regarding whether or not to initiate or discontinue nonvolitional nutrition and hydration should be based on the same assessment as decisions for any other medical treatment (benefits and burdens and the stated preferences of the patient or surrogate). With regard to initiation of feeding, the AAN recommends erring on the side of treatment until a definitive diagnosis can be made. As in other situations in which physicians disagree with the decision to initiate, withhold, or withdraw, they should not be forced to participate. If differences cannot be reconciled, the family must be informed that the patient may be transferred to the care of another physician or facility that will comply with his/her wishes.
The American Dietetic Association’s position on the feeding of permanently unconscious patients is similar to that of AAN. Their position paper (ADA, 1992) guides the dietitian to continue feeding until the diagnosis of PVS is confirmed. At this time, a family-health care team discussion should occur. If the patient’s choice, through the surrogate decision makers, is feeding, appropriate and adequate nutrition support should ensue. If cessation of feeding is the choice, the dietitian should provide information about expected course of decline. The organization urges sensitivity and responsiveness in all such cases.
AAN has also taken a stand on treatment decisions regarding the irreversibly paralyzed patients who have decision-making capacity (AAN, 1993). Standard ethical principles guide decisions for this group as with other competent patients. The physician has an obligation to honor the decisions made by competent patients afflicted with permanent paralysis, including the decision to forgo life-sustaining treatment. Once this decision is made, the physician also has the responsibility to facilitate comfort. This includes providing the necessary analgesia even if in doing so, there is a secondary effect that may hasten death. Again, physicians should not be forced to act against their conscience.
Religious Ethical Perspectives
In considering the use of ANH at the end of life, religious beliefs factor heavily in patient, family, and provider decision making. Religious perspectives on the issue are complex, but all faiths hold the sanctity and sacredness of life to the highest standard. In general, most major religious denominations in the United States, with the exception of the orthodox sects of Judaism and certain factions of the Roman Catholic Church, concur with the position that ANH is a medical treatment which may be withheld or withdrawn in the case of the terminally ill if its burdens outweigh its benefits and if the patient wishes for ANH to be withdrawn or withheld (Breck, 1998; Covenant of Life, 1983; Holst, 1986). (The consensus is less clear with regard to conditions of PVS and permanent unconsciousness.)
Judaism. Across Jewish traditions, reverence for life is central to the faith. However, the various groups disagree with respect to ANH. In general, those of the Reformed sect and some of the Conservatives do allow the withholding/withdrawing of nutrition and hydration while some Conservatives and most of the Orthodox sects do not (Dorff, 1991; Reisner, 1991; Rosin & Sonnenblick, 1998; Rosner, 1993; Schostak, 1994).
Roman Catholic Church. Most theologians of the Roman Catholic Church ascribe to the position that members are not obliged to accept extraordinary measures, including ANH for the terminally ill. The Declaration on Euthanasia by the Vatican in 1980 and the teachings of Pope Pius XII explicitly states that such forgoing or withdrawing are not suicide; rather they should be considered as the acceptance of the human condition and simply letting nature take its course (Texas Bishops, 1990). According to McCartney (1986) this means that feeding may be withheld or withdrawn when, in the patient’s view, this intervention becomes physically, psychologically, economically, emotionally, or spiritually too difficult to bear, either for the patient or others.
Because there is not universal acceptance of these positions in any given group, caution and an individualized approach are warranted. When religious and moral issues do arise, the patient or surrogate should be encouraged to seek guidance from their own spiritual leaders.
The Patient Self Determination Act (PSDA) and the Cruzan Supreme Court Decision have a direct bearing on the use of ANH.
Patient Self Determination Act. While the PSDA does not specifically mention ANH, it is important to this discussion because of its impact on decision making. The PSDA, enacted in 1990, mandates that all health care facilities who receive Medicare reimbursement must address the issue of advance directives with patients upon entry for treatment. Patients are not required to have an advance directive, but they must be asked if they wish to write one. If the patient has such a document, it must become part of the medical record and honored. Patients without advance directives should be provided information if they wish it. Many hospitals now have printed brochures and/or available personnel to assist patients in outlining their health care wishes. This act was a major force in increasing awareness of patients’ rights to express their wishes for end-of-life care.
Needless to say, an advance directive is useless and can do more harm than good if the patient is unaware of medical conditions and options. The challenge to nurses is to explain various treatments and procedures, and encourage patients to discuss their condition and options with their physicians before completing an advance directive. It is also advisable to encourage patients to discuss their preferences with their families because there will be times when the value judgments of family members, physicians, or other health care professionals will differ from those of the patient. A physician may presume that a ventilator would always be a comfort measure for severe dyspnea, or a family member may presume the same patient would benefit from an oxygen mask, but the patient may want neither. The patient may feel claustrophobic or restrained with either of those treatments, and prefer mobility and freedom over easier breathing. The patient, the physician, and the family may all be unaware of the option of low-dose morphine to ease dyspnea, which hospice has shown to be beneficial in care of the terminally ill (Woodruff, 1999). Advance directives are valuable for documenting the patient’s values, but good communication between all those involved is also critically important.
Cruzan Supreme Court Decision. The right of every patient to accept or refuse medical treatment, including life-sustaining procedures, was affirmed by the Supreme Court of the United States in the Cruzan decision (Cruzan vs. Missouri Department of Health et al., 1990). This decision acknowledged the emotional significance of food, but noted that feeding by implanted tubes is a medical procedure with inherent risks and possible side effects. Justice O’Connor wrote (concerning tube feeding), “Requiring a competent adult to endure such procedures against her will burdens the patient’s liberty, dignity, and freedom to determine the course of her own treatment. Accordingly, the liberty guaranteed by the Due Process Clause [of the constitution] must protect, if it protects anything, an individual’s deeply personal decision to reject medical treatments including the artificial delivery of food and water” (Cruzan et al., 1990, p. 426). In this case, proxy decision makers were required by the state of Missouri to show “clear and convincing evidence” that ANH would have been against the incompetent patient’s wishes. The decision left no question as to the right of patients to refuse ANH as well as any other medical treatment.
The following two national reviews illustrate the challenges of honoring patients’ wishes with regard to providing ANH at the end of life.
President’s Commission for the Study of Ethical Problems in Medicine (1983). This study concluded that no specific treatments, including usual hospital therapies such as parenteral nutrition or hydration, antibiotics, and transfusions are universally warranted and thus obligatory for a patient to accept. This document also suggests that all treatment should be evaluated according to the proportionate burdens and benefits it furnishes to patients. It also discusses patients’ rights to be involved in all health care decisions.
“Approaching Death: Improving Care at the End of Life.” This study was a comprehensive examination of the quality of end-of-life care in the United States (Field & Cassel, 1997). While not focused solely on ANH, the investigators concluded that although clinicians have available means to provide good end-of-life care, most lack the knowledge to do so. Numerous deficiencies in end-of-life care were found, including poor communications and pain management. This report is significant because it stimulated national strategies to improve end-of-life care, including improved professional education curricula, public education, and scrutiny of ethical policies and practices of health care facilities and practitioners.
Defining Palliative Nutrition and Hydration
For clinicians to make ethical decisions about ANH at the end of life, relevant medical, ethical (moral), and legal information must be considered. This knowledge can be applied to patient care as well as to family education and support.
In applying the ethical principles of beneficence, nonmaleficence, autonomy, justice, and virtue to the use of ANH at the end of life, the following questions will be considered:
* What is the potential for beneficial outcomes for this patient?
* What is the potential for inducing distressful side effects in this patient?
* Have the essential facts about this patient’s disease process and the likely outcomes of proposed treatment been explained to the patient in a manner that makes clear her/his options?
* What are this patient’s goals and values, and is he/she aware of the potential of this intervention for meeting those goals?
* What impact might the use of this treatment have on other patients or family members?
Research and expert opinion directs that the traditional goal of nutritional repletion, or ideal weight with metabolic balance, is rarely realistic or appropriate in progressive end-stage disease. The primary goal of nutrition and hydration in terminal illness is patient comfort. Therefore, palliative nutrition translates to a diet as tolerated and desired by the patient; and tube feeding or TPN is given only if benefits exceed burdens and/or the patient wishes such treatment. Professional responsibilities include optimizing intake and comfort, minimizing distressful symptoms, and providing education for family members or significant others.
Optimizing Intake and Comfort
Restricted diets are rarely necessary. The diet should be restricted only if the patient prefers (for example, some patients who have been restricted in sodium in the past are accustomed to and prefer the taste of food cooked without salt; diabetics may prefer to not consume sugar-laden foods). However, it is common for patients with end-stage cancer to prefer sweets to proteins and sometimes fats. Patients rarely have untoward side effects by ignoring previous restrictive diets because their intake of sodium, sugar, cholesterol, and calories is frequently diminished and self-limited.
Further, early satiety is common in terminally ill patients. Because patients feel full or satisfied after small amounts, offering small but more frequent feedings optimizes intake and results in increased comfort. Table 1 summarizes approaches to optimize intake and comfort.
Table 1. Optimizing Intake and Comfort
* Encourage high-protein/high-calorie foods, such as eggs, milkshakes, custards, peanut butter, cream soups, and commercially prepared supplements.
* Powdered nutritional supplements can be added to other foods without adding volume.
* Do not force foods that cause a metallic or bitter taste. These are usually red meats; fish or poultry could be offered instead.
* If an aversion to all meats develops, try eggs, cheese, or beans for protein.
* Provide food whenever the patient expresses hunger, do not wait for “mealtime” or expect the patient to eat three meals a day.
* Encourage intake with a gentle attitude, not with pressure.
* Offer small servings on small plates and serve more frequently.
* Remove food when the patient is finished.
* Offer favorite foods; expect changes from previous preferences.
* Make the atmosphere and food presentation as pleasant as possible.
* To conserve energy and/or reduce frustration, use “sippy cups” or large straws.
* Steroids may stimulate appetite; discontinue if side effects outweigh benefits.
* Megesterol acetate in doses of 800 mg/day may increase appetite, but is costly.
* Beer, wine, or sherry before meals may help appetite.
* Have ill-fitting dentures relined if this is a problem.
* Avoid routine weighing; it places undue emphasis on weight loss.
Patients who are on tube feedings need special attention to optimize its benefits while minimizing complications. The most serious complication of tube feedings is aspiration into the lungs. Aspiration may be due to stomach overloading, vomiting, poor sphincter control, or tube migration. Because the absorption of fluids and nutrients in terminally ill patients is not necessarily normal, frequent testing of residual in the stomach is necessary to prevent overloading. It will also help in making decisions about intermittent versus continuous drip methods of feeding delivery. Elevation of the head at 30 to 35 degrees during and for 1 hour after an intermittent feeding is helpful. Other complications to be aware of are erosion and inflammation of the tissues around the tubing. With the long-term placements of nasogastric tubes, nasal or esophageal necrosis can occur. With gastrostomies or jejunostomies, the ostomy opening must be kept clean and dry to prevent erosion and irritation.
Minimizing Distressful Symptoms
Permitting the patient to be in control (deciding the quantity, quality, and frequency of food) is the best way to maximize intake while minimizing discomfort. There are three ways the health care provider can assist in minimizing distressful symptoms: (a) establish the patient’s wishes, (b) plan interventions and ameliorate distressful symptoms, and (c) provide supportive teaching to family and friends. The distresses of forced feeding such as nausea, respiratory congestion, diarrhea, edema, etc. result in discomfort and poor quality of life. The problems of pain, constipation, and depression will definitely reduce intake and should have already been addressed if present. Specific gastrointestinal problems causing distress and interfering with intake are outlined in Table 2 (Gallagher-Allred, 1991; Smith, 2000).
Table 2. Interventions to Minimize GI Distress
Taste and Smell Changes
* Avoid foods with offensive odors. Cold foods such as peanut butter or yogurt may be less objectionable. Provide good oral hygiene. Patient may do better if not exposed to odors of food preparation.
* Use saliva substitutes (content similar to natural saliva, can be used ad lib). Serve moist foods. Add gravies or sauces. Liquids may be sipped ad lib. Juice popcicles may be appealing.
Sore Throat and Mouth
* Provide soft, cool foods; avoid temperature extremes. Avoid acidic, salty, spicy, or hard and crunchy foods. Assess and treat infections (candidiasis and herpes simplex common). Use topical analgesic medications.
* Provide consistency/texture best tolerated. Feed portion that best facilitates swallowing (usually small bites).
* Administer indicated medications, such as anti-emetics, lactase, and digestive enzymes. Avoid offensive odors. Avoid foods likely to aggravate nausea such as fatty, spicy, odorous, or bulky foods. Avoid physical activity right after eating. Avoid eating or talking about food in presence of patient who is nauseous.
Nausea and Vomiting
* Administer indicated medications, such as anti-emetics, lactase, and digestive enzymes. Avoid offensive odors. Avoid foods likely to aggravate nausea such as fatty, spicy, odorous, or bulky foods. Avoid physical activity right after eating. Avoid eating or talking about food in presence of patient who is nauseous.
Early Satiety or Bloating
* Offer small frequent feedings. Avoid carbonated beverages and gas-producing food.
* Investigate role of medications, including bowel stimulants, in causing diarrhea. Avoid foods known to cause or exacerbate loose stools. If appropriate, medicate with lactase or pancreatic enzymes, Lomotil[R], etc.
Relieving symptoms with parenteral hydration. A trial of parenteral hydration to relieve confusion is appropriate if it is likely that drug by-product retention is the cause, and the patient is not imminently dying. This is particularly important if there is “unfinished business” to which patients and families wish to attend. However, since there are multiple causes of confusion in terminal illness, and oral opiates administered in stable regimens are rarely associated with confusion, hydration by IV or hypodermoclysis should be used only after careful consideration of potential outcomes, degree of value to the patient or family, and duration of benefit. The burden of potential fluid overload and its contribution to discomfort is highly likely with the multi-systems organ failure common at the end of life.
Offering food and fluid symbolizes love and nurturing. The sharing of food is associated with virtually every social event and celebration. Thus, it is under standably difficult for caregivers and family members to accept the process of decreased food/fluid intake during the dying process. It is usually easy for the patient to accept the change due to the discomfort associated with eating. For most caregivers and family members, however, it is a very difficult adjustment. With education and sensitive communication, acceptance is possible and probable (Gallagher-Allred, 1989; Smith, 1995). It is helpful to discuss and have a printed handout containing the following information:
* Nutritional needs change as illness advances; fewer calories are needed.
* Frequently more than one body system is failing, which may cause changes in digestion and absorption.
* The disease process has altered the patient’s desire to eat; the experience of eating can change from a pleasant one to a distressing one for the patient.
* Food cravings can change from one moment to the next so the person who provides a requested item should not be personally offended if only one or two bites are taken.
* Gradual dehydration may be a natural way for the body to prevent distressing symptoms such as lung congestion, rattling secretions, shortness of breath, vomiting, edema, etc.
* Since the natural process of dying shuts down normal functions, dying patients rarely feel hungry or thirsty.
* When a patient in advanced stages of disease comes within days of death, it is normal to refuse any intake.
* Patients should not be made to feel guilty because of “not trying to eat.” It is not a matter of not wanting to, but rather, of not being able to eat.
Refocus of caring emotions. It is important to stress that nurses and family members should not feel powerless when they cannot provide nourishment in the form of food and fluid. The patient’s mind and spirit can be nourished with genuine and loving words and gestures, pain control, intellectual stimulation, spiritual guidance, and humor. In this way, the goal of comfort will be
In summary, the use of ANH for patients at the end of life rarely restores nutritional status or prolongs life. In most patients with end-stage incurable illness, ANH has the potential for causing burdensome, distressful symptoms. The exceptions to this are those rare patients who complain of thirst unassuagable by ice chips or sips of liquids or who suffers from opioid toxicity that cannot be relieved by reducing doses, switching drugs, or otherwise not controlling side effects satisfactorily. These patients may benefit from low-volume fluid administration via hypodermoclysis (Bruera et al., 1995).
In medical practice, the health care team must remember that the indication for applying technology is not the mere availability of that technology (Micetich et al., 1983). Rather, clinicians should have clearly defined goals and endpoints of therapy in mind when applying such therapy. While providing nutritional support may seem to be the right thing to do, health care professionals must continually scrutinize the actual benefits and burdens of all therapies (Dresser & Boisaubin, 1985). Determining benefits or burdens of any treatment must include the patient and family’s opinion of what constitutes benefit or burden. Ethical principles of beneficence, nonmaleficence, autonomy, justice, and virtue help providers identify when ANH is an appropriate or inappropriate medical treatment. In terms of religious and spiritual perspectives, individual beliefs should be respected and the life of each person honored. Case law affirms that patients have the right to refuse any proposed treatment, and clinicians have an obligation to provide accurate information about potential outcomes, and then honor patients’ decisions. This is the challenge to nurses caring for dying patients.
Choose one correct answer for each question.
1. The consensus of legal and ethical
opinions related to end-of-life care
support the following position:
a. Artificial nutrition and hydration
(ANH) is morally required to
b. Terminally ill patients have the
right to refuse all treatments
except AN H.
c. IV therapy may be considered
extraordinary treatment, but
tube feeding is ordinary treatment
and should be used when
a patient has inadequate intake.
d. Terminally ill patients have the
right to refuse all life-sustaining
treatment, including ANH.
2. All except one of the following documents
specify artificially provided
nutrition and hydration as a medical
treatment which can be refused by a
a. Cruzan Supreme Court
b. Patient Self Determination Act.
c. President’s Commission for the
Study of Ethical Problems in
d. Standards for Health Care
Services by the National
Conference of Catholic Bishops.
3. End-of-life care refers to special interventions
for which group of patients?
a. Only those patients who
acknowledge they are dying
and have requested not to be
b. Patients who choose to give up,
c. Only those patients with
d. Patients with limited prognosis
from advanced incurable chronic
4. The ethical principle of autonomy
a. The patient or patient proxy
makes decisions of what is in the
best interest of the patient.
b. The physician makes all the decisions
if the patient is in a coma.
c. The patient and designated
proxy have equal weight in decision
making at all times.
d. The patient cannot change a
decision that is already documented
in an advance directive
that has been placed in the medical
5. Nonmaleficence means avoiding
harm to the patient in the course of
care. The application of this principle
at the end of life implies that:
a. ANH should always be given to
increase comfort and prolong
b. Artificial nutrition may not benefit
the end-stage cancer
patient, but hydration is essential
to prevent the discomfort of
c. Physiologic processes at the
end of life alter the benefit/burden
ratio of ANH.
d. Special diets for diagnoses such
as heart failure and diabetes
should always be ordered
because this generally results in
increased comfort and
6. The ethical principle of virtue would
not include the following idea:
a. Description of options, including
potential outcomes (good or
bad) of each.
b. Use of the phrase, “1 do not
c. The physician presents the one
course of therapy he or she
thinks is best for the patient; this
will ease the patient’s decision-making
d. The physician is prudent in considering
the potential for benefit
to the individual patient situation,
as well as the physical,
emotional, and financial burdens.
7. The fact that end-of-life care has not
been done well in the United States in
the past is attributed to:
1. Deficit in medical and nursing
education on the subject of
dying and end-of-life care.
2. A paternalistic approach to
3. A technological and problem-solving
orientation to diagnostic
and treatment interventions.
4. Inadequate communication
skills of health care professionals.
a. 1 and 2.
b. All of the above
c. 1, 2, and 3.
d. 2 and 3.
8. Studies done with hospice and palliative
care patients suggest that electrolyte
imbalance is not generally
seen as a concern in this population
of patients. All except one of the following
statements are posed as reasons
a. End-stage patients who do have
abnormal electrolytes do not
experience discomfort as a
b. Electrolytes may remain normal
in most of these patients
because of the gradual decrease
of fluid and nutrient intake over
a long period of time, as
opposed to a sudden change.
c. Electrolytes are normal in the
majority of dehydrated terminally
d. Healthy people deprived of fluids
have similar changes to
electrolyte balance as do terminally
ill patients with insufficient
9. Sodium is a major element of concern
when dehydration occurs. The
following statement is theorized concerning
sodium levels and dehydration
in terminally ill patients.
a. Hyponatremic dehydration can
result from fluid loss from
burns or osmotic diuresis.
b. Even if the patient is neither
hyponatremic nor hypernatremic,
dehydration will result in
c. Hypernatremic dehydration is
loss of body sodium and can
result in hypotension, stupor,
nausea, and vomiting.
d. Isotonic (or eunatremic) dehydration
occurs when the intake
of fluid and nutrients is proportional
and decreases gradually.
10. Palliative care specialists have
observed that terminally ill patients
are usually more comfortable without
ANH. One of the reasons put forth to
account for this is:
a. Terminally ill patients’ intake is
usually sufficient without ANH.
b. Terminally ill patients are rarely
benefited by artificial nutrition,
but are more comfortable if
they receive artificial hydration.
c. Patients with widespread cancer
have decreased nutritional
requirements due to a
decreased metabolism rate.
d. Problems with absorption and
metabolism preclude beneficial
response to ANH, more likely
fluid overload will be the result.
11. If a trial of fluid by hypodermoclysis
for the relief of confusion caused by
opioid toxicity is initiated, the recommended
volume per 24 hours is
a. 500 ml.
b. 1,000 ml.
c. 2,000 ml.
d. 3,000 ml.
12. Hospice and palliative care literature
make the following observation
about longevity of terminally ill
patients and use of ANH.
a. Those who receive no ANH survive
as long or longer than
those who do.
b. Those who experience dysphagia
survive longer with ANH.
c. Those known to respond positively
in the past will survive
longer if this is continued.
d. There is an improved survival
rate in end-stage dementia
patients who receive ANH.
13. A health care proxy designated by the
patient becomes the decision maker
to consent to or refuse treatment
a. The patient asks him to.
b. The patient becomes unable to
speak for herself.
c. The doctor requests the proxy
to do so.
d. When the next of kin is not
14. It is ethically and morally appropriate
to initiate a trial of ANH to ascertain
the degree of benefit or burden to a
patient at the end of life, if.
a. It is likely to correct abnormal
b. The goal is to prolong life.
c. The goal is to correct nutritional
d. Criteria related to goals meaningful
to the patient are established
prior to treatment.
15. An example of observing the ethical
principle of nonmaleficence would
a. Continuing as long as there is
b. A hospice program stopping
the treatment if it is an excessive
c. Stopping a treatment when its
burden exceeds its benefit.
d. Continuing treatment because a
family member “does not want
to give up.”
16. Palliative nutrition at the end of life is
best served when the diet order
a. Soft diet and liquids ad lib.
b. High-protein diet with nutritional
supplement shakes between
c. Diet as desired and tolerated by
d. Continue low-sodium diet; NPO
if nausea and vomiting persists.
17. The bothersome symptoms most
often reported by dehydrated terminally
ill patients are –.
and these are easily alleviated.
a. Copious mucous and coughing.
b. Thirst and dry mouth.
c. Nausea and vomiting.
d. Frequent urination and hesitancy.
18. The following statement is true of
fluid overload that occurs when the
patient who is terminally ill cannot
adequately metabolize the ANH
a. Increased extracellular fluid
causes increased gastrointestinal
secretions, ascites, pain,
nausea, and vomiting.
b. Increased extracellular fluid
causes pulmonary edema, but
eases coughing and dyspnea
because it thins secretions.
c. Fluid overload increases the
release of ADH.
d. Increased extracellular fluid
causes peripheral edema, but
this is beneficial in keeping the
skin soft and moist.
19. The Cruzan Supreme Court Decision
a. Family members cannot decide
whether or not to discontinue
ANH for an incompetent
b. No patient can refuse life-sustaining
c. Any competent patient may
refuse any medical treatment,
d. ANH is not considered a medical
treatment; rather, as ordinary
20. The Declaration on Euthanasia by the
Vatican in 1980 and the teachings of
Pope Pius XII declared that foregoing
or withdrawing of ANH in the terminally
ill should be considered as:
a. The acceptance of the human
b. A mortal sin.
d. A decision not to be left to the
Artificial Nutrition and Hydration at the End of Life[ILLUSTRATION OMITTED]
Evaluation disagree agree
The offering met the stated objectives.
1. Describe distressful complications 1 2 3 4 5
commonly seen when artificial nutrition
and hydration are used with dying patients.
2. Explain why patients with end-stage 1 2 3 4 5
incurable disease have different nutrition
and hydration needs than patients with
potential for recovery.
3. Discuss the ethical and legal opinions 1 2 3 4 5
regarding artificially provided nutrition
and hydration at the end of life.
4. The material was  new,  review for me.
5. Time required to complete reading assignment
a. Less than 1 hour —
b. 1-2 hours —
c. 2-3 hours —
d. 3 hours or more —
1. To receive continuing education credit for individual study after reading the article, darken the ‘appropriate box corresponding to the best answer on the answer form (a photocopy of the answer form is acceptable). Each question has only one correct answer. A passing score for this test is 14 correct answers (75%).
2. Complete the information requested on the answer form in the space provided.
3. Detach and send the answer form along with a check or money order payable to AMSN to MEDSURG Nursing, CE Series, East Holly Avenue Box 56, Pitman, NJ 08071-0056.
4. Test returns must be postmarked by October 31, 2002. If you pass the test, a certificate for 3.0 contact hour(s) will be awarded and sent to you.
This independent study activity for 3.0 contact hour(s) is provided by the Academy of Medical-Surgical Nurses, which is accredited as a provider and approver of continuing education in nursing by the American Nurses Credentialing Center’s Commission on Accreditation (ANCC-COA).
This article was reviewed and formatted for contact hour credit by Catherine Todd Magel, EdD, RN, C, Assistant Professor, College of Nursing, Villanova University, Villanova, PA; Sally S. Russell, MN, RN,C, Medical-Surgical Course Chairperson/ Instructor/Staff Nurse, St. Elizabeth Hospital School of Nursing, Lafayette, IN; and Marilyn S. Fetter, PhD, RN, CS, Assistant Professor, College of Nursing, Villanova University, Villanova, PA.
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Shirley Ann Smith, MSN, RN, CHPN, is a Hospice Consultant & Educator, Dallas, PA; formerly Clinical Specialist Oncology and Hospice Coordinator; and Author of Hospice Concepts: A Guide to Palliative Care in Terminal Illness.
Maria R. Andrews, MS, RD, CNSD, is Clinical Nutrition Manager, V.A. Medical Center, Wilkes Barre, PA, and Hospice Clinician, Researcher, and Author.
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