Palliative Care

Kelay Trentham, MS, RD, CD WHAT IS PALLIATIVE CARE? * *

Palliative treatment is defined as treatment that is designed to ease the symptoms of a disease rather than attempting to cure it.1 The term “palliative care” refers to both a care philosophy and a comprehensive, organized, and highly structured interdisciplinary care system provided to persons with debilitating or life-threatening illness for the purpose of physical, spiritual, and psychological comfort.23 It is suggested that palliative care begins at the time of such diagnosis and continue through cure or until death, and into the family’s bereavement period.4 Palliation may be either the primary focus of care, or it may be provided concurrently with life-prolonging treatment.3

Key components of palliative care include a family-centered approach; a focus on effective pain and symptom management; presence of spiritual, psychosocial and bereavement support; and provision of individualized care plans and coordinated services in any setting used by the patient.2, 3 Hospice is well-established as the means for delivering palliative care at the end of life.4 Other organizational delivery models include the following approaches:

Consultation service team (hospital, nursing home, office practice, or home settings)

Dedicated inpatient unit (acute or rehabilitation hospital, nursing home) or as part of freestanding inpatient hospice

Combined consultative service and inpatient unit (hospital, nursing home)

Combined hospice and palliative care program (hospital, nursing home, freestanding inpatient hospice)

Hospital- or private-practice-based outpatient care clinic

Hospice-based home care or outpatient consultation4

In settings without direct access to a palliative care specialist, it is advised that consultation be sought via telemedicine or other remote means.4

It is well documented that communication issues among these care settings may result in discontinuity of care and, therefore, cause distress for the patient and family.4 Thus a core value of palliative care is to facilitate continuity of care to avoid needless suffering and errors, eliminate the perception of abandonment, and ensure respect of the patient’s choices.4

General goals of palliative care include prevention and relief of suffering, enhancement of quality of life, optimization of function, assistance with decision making, and provision of personal growth opportunities for patients and families.4, 5 More specifically, the World Health Organization (WHO) states that palliative care performs the following functions:

Provides relief from pain and other distressing symptoms

Affirms life and regards dying as a normal process

Intends neither to hasten nor to postpone death

Integrates psychological and spiritual aspects of patient care

Offers a support system to help patients live as actively as possible until death

Offers a support system to help the family cope during the patient’s illness and in their own bereavement

Uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated

Enhances quality of life and will possibly influence the outcome of illness

Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, including chemotherapy and radiation therapy, and includes those investigations needed to better understand and manage distressing complications5

Comprehensive evaluation and treatment should be patient-centered and focused on the role of the family unit in decision making while honoring their values, beliefs, and cultures. This approach may require the expertise of a wide variety of healthcare team members, including physicians, nurses, social workers, chaplains, pharmacists, psychologists, rehabilitation specialists, child life specialists, bereavement coordinators, trained volunteers, and dietitians.4 Effective integration of these disciplines and services requires excellence in communication, leadership, collaboration, and coordination.4

The Dietitian's Role in Palliative Care

An integral part of the healthcare team, the dietetics professional is an important advocate for the advanced cancer patient receiving palliative care.

The registered dietitian (RD), who has a distinctive education encompassing nutrition, medical, behavioral, and psychosocial sciences as well as ethics, can provide a balanced perspective regarding the appropriateness of various nutrition interventions, including artificial nutrition and hydration.6 The RD serves as educator and advisor for the patient and family, as well as for other healthcare clinicians. Throughout a patient’s course of care, it is the RD’s responsibility to assess the patient’s nutritional status, identify his or her nutrition care needs, and implement a nutrition care plan based on current evidence of best practice. Development of a nutrition care plan entails involving the patient, the patient’s family, and the healthcare team. The resulting plan should be consistent with the patient’s goals and focused on quality of life, with an objective both to prevent and relieve any suffering associated with the symptoms and complications of advanced cancer.7

Caring for the Patient with Advanced Cancer

Ideally, supportive nutrition care should begin at the time of cancer diagnosis.8 Although aggressive nutrition care may be warranted for the patient undergoing curative treatment, the goals of medical nutritional therapy will change when it is determined that the disease is incurable.9 As the treatment mode shifts away from curative therapy and toward end-of-life care, there is greater focus on well-being and quality of life (QoL).10 For the patient with advanced cancer, early palliative care is described as the period when disease is incurable and life-threatening, but death is not necessarily imminent. In contrast, late palliative care is delivered when the disease is in the terminal phase, life expectancy is less than one month, and maintaining QoL is considerably more difficult.8, 9 During early palliative care, nutritional interventions should be a priority to aid in the healing process, to ensure that nutrition therapy options can be proactively identified and discussed, and to improve the patient’s sense of well-being.9 In the terminal phase of disease, patients and their families may require guidance regarding artificial nutrition and hydration in addition to less invasive measures to address nutritional status.

Prevalence of Nutritional Impact Symptoms

Along with the late stage of cancer disease, deteriorating nutritional status (weight loss) and declining nutritional intake (loss of appetite) have been shown to be major determinants of patients’ QoL.1113 Severe chemosensory dysfunction has been correlated with significantly decreased food enjoyment and QoL as well.14 Table 14.1 illustrates the prevalence of nutrition-related symptoms of patients with advanced cancer in four studies.15-18

Additionally, symptoms of fatigue and diminished sense of well-being have been noted to be among the most distressing symptoms reported by cancer patients.19 Given that significant decreases in energy intake have been seen in patients with late-stage cancer,20 and that symptoms such as anorexia and chemosensory dysfunction are known to result in significantly reduced calorie intake, nutrition-related symptoms that impair adequate intake are likely to be partly responsible for fatigue.14 Clearly, the declines seen in patients’ nutritional Table 14.1 Nutrition-Related Symptoms in Patients with Advanced Cancer (Prevalence as a Percentage of Total Cases)

Symptom

Inpatient and Outpatient1

(N = 352)

Outpatient2 (N = 200)

Inpatient (N = 50)

Inpatient and Outpatient (N = 1,000)

Weight loss*

85%

54%

76%

50%

Anorexia

81%

59%

56%

66%

Early satiety

69%

49%

71%

51%

Xerostomia

69%

67%

84%

57%

Constipation

59%

39%

58%

52%

Nausea

49%

26%

48%

36%

Bloating

43%

50%

50%

18%

Vomiting

38%

11%

34%

23%

Diarrhea

24%

10%

16%

8%

Taste changes

16%

32%

60%

28%

Other symptoms observed include belching (18-35%), indigestion (19-35%), hiccups (9-25%), sore mouth/throat (5-22%), dysphagia (18-32%), and odynophagia (15%).

*Defined as more than >10% body weight lost.

Data Sources

1Sarhill N, Mahmoud F, Walsh D, et al. Evaluation of nutritional status in advanced metastatic cancer.

Support Care Cancer. 2003;11:652-659.

2Homsi J, Walsh D, Rivera N, et al. Symptom evaluation in palliative medicine: Patient report vs systematic assessment. Support Care Cancer. 2006;14:444^53.

3Komurcu S, Nelson KA, Walsh D, Ford RB, Rybicki L. Gastrointestinal symptoms among inpatients with advanced cancer. Am J Hosp Palliat Care. 2002;19:351-355.

4Walsh D, Donelly S, Rybicki L. The symptoms of advanced cancer: relationship to age, gender and performance status in 1000 patients. Support Care Cancer. 2000;8:175-179.

status are multifactorial, with any one symptom or a combination thereof potentially contributing to significant distress for patients with advanced cancer.

Cancer cachexia, a wasting syndrome of nutritional deterioration, is characterized by severe weight loss and, unlike starvation, includes loss of both lean body mass and adipose tissue.2122 Cachexia is present in more than 80% of patients with gastric and pancreatic cancers, and in more than 50% of patients with lung, prostate, and colon cancers.23 Overall, approximately 50% of cancer patients suffer from cachexia,24 which is typically accompanied by anorexia, fatigue, anemia, and edema.23 In addition, one study showed that 52% of patients surveyed indicated concern about either eating less or weight loss25 ultimately contributing to decreased QoL.

Symptom Etiology and Management

Anorexia, Cachexia, and Weight Loss

Etiology Cancer cachexia syndrome is thought to be the result of multiple factors that can be categorized as follows: anorexia leading to inadequate nutrient intake, metabolic disturbances, and the presence of inflammatory and other humoral factors.26 Anorexia in cachexia may be primarily caused by cytokine-induced hypothalamic resistance—the inability of the hypothalamus to respond appropriately to signals that indicate an energy deficit.22 Additional contributing factors to cachexia-anorexia include depression, anxiety, taste alterations, intestinal obstruction, chemotherapy and radiotherapy, previously mentioned nutrition-related symptoms, and pain.23,26,27 Compared to controls, cancer patients have been found to have normal, reduced, or increased metabolic rates.24 Glucose turnover and gluconeogenesis (glucose production from body tissues) are increased in the presence of insulin resistance, elevated peripheral fat mobilization, and excessive fatty acid oxidation, leading to depletion of lipid stores26; whole-body protein turnover is increased while muscle protein synthesis is reduced, resulting in loss of lean body mass.24, 26 In addition to affecting appetite regulation, cytokines are thought to play a role in inducing the catabolic state.22, 26 However, the specific mechanism of their involvement remains unclear and continues to be studied.

Management Although anorexia is only one of several factors resulting in cachexia, anorexia is considered a primary contributing factor to this wasting syndrome.28 For this reason, most nutritional interventions are geared toward improving appetite and maximizing nutrition intake.22, 28 Studies have indicated that nutritional counseling positively affects patient outcomes—and particularly QoL—in patients undergoing curative treatment.29-32 In these studies, counseling was individualized, based on regular food, and given in the form of written dietary guidelines with detailed explanation.32

The use of oral supplements containing bioactive substances has also been extensively studied in patients undergoing curative treatment. One review evaluating the use of fish-oil-enriched nutrition supplements providing 2-6 g/day of eicosapentaenoic acid (EPA) indicated that the supplementation led to weight stabilization, gains in lean body mass, reversal of negative nitrogen balance, prolonged survival, and improved or stabilized QoL.33 Conversely, another study showed no positive benefits related to ingestion of EPA supplementation in terms of weight, appetite, or wellbeing.34 Researchers speculate that the benefits obtained related to EPA ingestion are associated with the doses consumed, as Fearon et al. found a dose-response relationship between n-3 fatty acid intake and weight gain, increase in lean tissue, and improvements in QoL.35

Recent reviews investigating the effects of n-3 fatty acid supplementation have yielded conflicting results.36, 37 In their review of 17 studies, Colomer and colleagues concluded that oral supplements providing at least 1.5 g/day of n-3 fatty acids were beneficial in increasing weight and appetite, improving QoL, and reducing postsurgical morbidity, particularly in patients with upper digestive tract and pancreatic cancers.36 Another review of 5 trials that enrolled a total of 587 patients, however, found insufficient evidence to conclude that EPA supplementation improves symptoms of cachexia syndrome.37 Further studies including patients with curable or terminal disease will be helpful in determining whether there is sufficient cause to routinely recommend EPA supplementation.

Pharmacological approaches are also considered an important part of integrative therapy for cachexia.22 The primary drugs that have been used to improve appetite include progestins (megestrol acetate [MA], medroxyprogesterone acetate [MPA]), cannabinoids (dronabinol), corticosteroids (dexametha-sone),22 and prokinetics (metoclopramide).28 Other agents studied include hydrazine sulfate, cyproheptadine, pentoxifylline, melatonin, erythropoietin, androgenic steroids, ghrelin, interferon, and nonsteroidal anti-inflammatory drugs (NSAIDs; indomethacin).28 In a review of 55 studies, only 2 medications garnered sufficient evidence to support their use in cancer cachexia: corticosteroids and progestins.28 The most commonly studied progestins, MA and MPA, have been found to increase weight and exhibit a dose response up to a dosage of 800 mg/day.28 Whether corticosteroids are associated with significant benefits is difficult to evaluate, because the studies investigating their use have used varied dosages and different types, making it difficult to determine the optimal dose and duration of use.28 Short courses of use are generally recommended for corticosteroids, as their benefits typically diminish after 4 weeks.28

Dry mouth, early satiety, and taste changes have been identified as an additional symptom cluster that occurs together with fatigue/anorexia, which supports the concept that anorexia-cachexia syndrome is multifactorial in origin.38 Other symptoms that may affect anorexia, and thereby promote weight loss, include pain, depression, and other nutrition-related symptoms such as nausea, vomiting, malabsorption, and constipation.23

Table 14.2 summarizes the therapeutic strategies used for treating the anorexic-cachectic patient. Specific recommendations for addressing individual nutrition-related symptoms are discussed later in this chapter, as well as indications and contraindications for use of artificial nutrition and hydration.

Early Satiety

Etiology As previously discussed, early satiety is common in advanced cancer, occurring in 49% to 71% of patients,15-18 and is likely to be a significant contributing factor in reduced intake. Despite this fact, early satiety is a symptom that Table 14.2 Palliative Nutrition and Medical Therapy Approaches for Anorexia—Cachexia

Provide individualized dietary counseling.

Provide one-on-one instruction including written information.

Recommendations: small, frequent meals; energy-dense foods; eat at regular times; pleasant surroundings at mealtime; avoid unpleasant odors; exercise as tolerated and with doctor’s permission; avoid extremes in taste and temperature; take liquids between meals; oral supplements to aid calorie intake

Address nutrition-related symptoms.

Nausea, vomiting, dry mouth, early satiety, taste changes, constipation, malabsorption

Address non-nutrition-

related symptoms.

Pain, depression

Provide drug therapy.

Progestins (MA, MPA)

Corticosteroids

Sources: Laviano A, Meguid MM, Inui A, et al. Therapy insight: Cancer anorexia-cachexia syndrome: When all you can eat is yourself. Nat Clin Pract. 2005;2:158-165; Stewart G, Skipworth RJE, Fearon KCH. Cancer cachexia and fatigue. Clin Med. 2006;6:140-143; Finley J. Management of cancer cachexia. AACN Clin Issues Ad Pract Acute Crit Care. 2000;11:590-603.

is rarely discovered unless the healthcare provider specifically inquires about it.39 Early satiety may be attributed to a number of things, but is most commonly thought to be related to decreased gastric motility due to paraneoplastic syndrome or chemotherapy.39 Other causes include impaired gastric motility and decreased gastric capacity related to dysfunction of the autonomic nervous system, medications (opioids, chemotherapy), gastric surgery, fibrosis, or gastritis.39

Management Nutrition intervention for early satiety should address known causes. If impaired gastric motility is a known or suspected cause, prokinetic agents may be beneficial.23 Patients may also be advised to eat small, frequent, and nutrient-dense meals or snacks; focus on eating earlier in the day; avoid consumption of foods that have very high fat content (which may increase gastric transit time); drink liquids between meals; limit intake of gas-forming foods; and, if appropriate, consider light activity to help stimulate digestion.39, 40

Nausea and Vomiting

Etiology Nausea and vomiting are considered two of the more distressing symptoms experienced by patients with advanced cancer41 and appear to be more prominent than prevalence statistics might suggest (see Table 14.1 on page 354). Vomiting is less prevalent than nausea and seems to be less bothersome as well.42 In advanced cancer, nausea and vomiting are more likely seen in patients diagnosed with stomach or breast malignancies, and may be of moderate to great severity.42 The most common causes of these symptoms include mechanical issues (impaired gastric emptying, GI obstructions), chemical sources (cytotoxic agents, opioids, NSAIDs), therapeutic side effects (as in palliative radiation therapy), and metabolic factors (infections, comorbidities, renal or hepatic failure).39, 43 Other contributing factors include pain, fear and anxiety, and unpleasant odors or tastes.39

Management Etiology-based management of nausea and vomiting is recommended for promoting a systematic approach to patient care, identifying all possible causes, and providing specific and appropriate therapy in a population already at risk for overmedication.41 Mechanical issues, such as impaired gastric emptying or bowel obstruction, may require either pharmacological or nonpharmacological management techniques.41 Impaired gastric emptying can be treated with prokinetics, as previously described.23 Appropriate treatment of bowel obstruction requires careful consideration of the tumor location and burden, patient’s prognosis, patient’s performance status, and presence of concurrent complications.44 Options for treatment include surgery, nasogastric suction, pharmacological treatment, self-expanding metallic stents, venting gastrostomy, and bowel rest with total parenteral nutrition (TPN) or hydration.44 Clinical practice recommendations for managing bowel obstruction from an expert panel endorsed by the European Association for Palliative Care are summarized in Table 14.3.

Table 14.3 Palliative Therapy Recommendations for Management of Bowel Obstruction

Surgery

Not recommended for patients with poor prognostic criteria: intra-abdominal carcinomatosis, poor performance status, massive ascites.

Successful palliation is associated with absence of palpable abdominal or pelvic masses, ascites volume < 3 L, unifocal obstruction, and preoperative weight loss < 9 kg.

Nasogastric tube (NGT) for suction

Temporary use only recommended if inoperable obstruction not manageable by drugs alone

Drugs: antisecretory, analgesics, antiemetics

Recommended alone or in combination; efficacy supported by literature

Self-expanding metallic stents

May be useful in advanced metastatic disease, poor surgical risk; not without complications; further studies warranted to determine who may best benefit

Venting gastrostomy

Consider if drugs unsuccessful; preferred for long term decompression over NGT; percutaneous endoscopic gastrostomy (PEG) tube is superior to surgical gastrostomy tube; 90% effectiveness in controlling nausea and vomiting

Total parenteral nutrition

(TPN)

Controversial; indicated for patients who may die of starvation rather than tumor spread; consider in young patients with Karnofsky Performance Score

(KPS) > 50

Hydration

May be indicated to correct nausea; may be difficult, uncomfortable for some patients; regular mouth care is preferred treatment for correcting dry mouth

Source: Ripamonti C, Twycross R, Baines M, et al. Clinical-practice recommendations for the management of bowel obstruction in patients with end-stage cancer. Support Care Cancer. 2001;9:223-233.

Drug-induced nausea and vomiting are typically treated with antiemetics, rotation (in the case of opioids), steroids, mucosal protectants (in the use of NSAIDs), and changing, reducing dosage of, or discontinuing use of the causal agent.45 Nausea and vomiting related to radiation therapy is prophy-lactically treated with serotonin-receptor antagonists, dopamine-receptor agonists, or dexamethasone.42 Metabolic causes may be adequately treated with hydration (uremia) or appropriate medications (such as bisphosphonates for hypercalcemia), or by otherwise addressing the cause (such as correcting electrolyte imbalances).42

Individualized dietary intervention for the management of nausea and vomiting has been found to be useful.39, 42 Basic recommendations include those previously described for early satiety. Also recommended are the following measures: avoidance of strong odors; keeping foods cold or at room temperature; eating dry, starchy, or salty foods; taking sips of ginger ale; eating candied ginger or peppermint candies; avoiding liquids on an empty stomach; and avoiding lying down for at least one hour after eating.40 If vomiting occurs secondary to gagging on secretions, the following measures may help: increasing fluid intake to thin secretions; frequent rinsing and gargling with a baking soda solution (1 tablespoon baking soda in 1 quart of water); eating fresh pineapple to thin oral and pharyngeal secretions; use of a cool mist humidifier; and avoiding alcohol-based mouthwashes, which can further dry the mouth.40

Xerostomia

Etiology Xerostomia, or dry mouth, is very common in patients with advanced cancer, and particularly if they undergo radiation to the head and neck areas.45 In addition to being distressing, dry mouth impairs swallowing, lessens taste and enjoyment of food, and can lead to infections, denture problems, bad breath, and difficulty communicating.45, 46 Opioids are thought to be the most common cause of dry mouth.39 Other medications that can cause dry mouth include antibiotics, antiemetics, tricyclic antidepressants, anticholinergics, antihistamines, beta blockers, cytotoxics, and diuretics, all of which reduce saliva flow.39, 45, 46 Other causes include dehydration, mouth breathing, anxiety, advanced age (age > 65 years), smoking, and poor fluid intake.45 Exposure to alcohol, either by drinking or from oral rinses, also contributes to oral dryness.46

Management Effective management of xerostomia can prove challenging for patients with advanced cancers. Adequate oral hydration is an essential element of care,

but may be a difficult goal for the patient who is struggling with other symptoms such as nausea, vomiting, dysgeusia, and anorexia.46 For this reason, both fluid intake and good oral hygiene should be encouraged. Toothbrush-ing with a soft brush and fluoride toothpaste is recommended on a twice daily basis.39, 47, 48 Denture cleaning is recommended after each meal and after removal of the dentures in the evenings, and gums/soft tissue should be brushed with a soft brush.47

Several types of mouth rinses have been suggested to alleviate xerostomia, including chlorhexidine (antibacterial), sodium bicarbonate, dilute hydrogen peroxide, and salt water or saline.49 In an extensive review, however, only saline rinses were found to have no apparent detrimental effects.49 Chlorhexidine causes burning and stinging, and patients complain that it has an unpleasant taste.49 Sodium bicarbonate promotes an alkaline environment, which allows for bacterial growth, and some patients find that it has an unpleasant taste.49 Hydrogen peroxide, even diluted, is highly astringent and is noted to cause stinging, pain, nausea, exacerbation of dryness; it may also lead to fungal overgrowth.49 In patients with oral lesions, peroxide inhibits mucosal tissue granulation.49 Water-based mouthwashes, such as Biotene and Oral Balance, should be used in place of alcohol-containing ones.50 Saline solution (0.9% sodium chloride) is non-irritating and may promote granulation and healing.49 Patients may also rinse the mouth with a meat tenderizer solution (1/2 teaspoon unseasoned tenderizer mixed into V2 cup water) to help manage sticky saliva.51 It is recommended that lemon and glycerin be avoided, as the former quickly exhausts salivary production while the latter may further dry the mouth.48, 49

Pharmacological symptom management consists primarily of either salivary stimulation or use of salivary substitutes.52 For patients who may still have some salivary activity, pharmacological treatment options include pilocarpine, cevimeline, citric acid, sodium fluoride, chlorhexidine, and nicoti-namide.39, 46,52 Salivary substitutes may also help relieve the discomforts associated with dry mouth. These solutions mimic the physical and chemical characteristics of saliva, but do not contain the protein, digestive, and antibacterial enzymes found in actual saliva.46 Carboxymethyl cellulose- and mucin-based lubricants are thought to be the most useful.17, 52

Additional recommendations for managing xerostomia include avoiding tobacco and using a cool mist humidifier.40 Table 14.4 lists dietary interventions useful in the management of xerostomia. Food and fluid should be provided via the oral route only if this practice is comfortable for the patient. In addition, the reasoning behind the dietary restrictions should be explained so that patients may make informed decisions regarding avoidance of foods that may exacerbate symptoms.

Sip cool, smooth liquids or suck on ice chips, popsicles throughout the day.

Encourage water over highly acidic fruit juices; fruit nectars may also be better tolerated. Try very soft, moist foods with added sauces, gravies, dressings, oil, or butter.

Avoid alcohol, caffeine, tobacco, and hard or spicy foods.

Try tart foods for stimulating saliva flow unless they cause discomfort.

Chew sugar-free gum.

Sources: Appendix A: Tips for managing nutrition impact symptoms. In: Elliott L, Molseed L, McCallum PD, Grant B, eds. The Clinical Guide to Oncology Nutrition. 2nd ed. Chicago, IL: American Dietetic Association; 2006:241—245; Amerongen AVN, Veerman ECI. Current therapies for xerostomia and salivary gland hypofunction associated with cancer therapies. Support Care Cancer. 2003;11: 226—231; Grant B, Hamilton KK. Management of Nutrition Impact Symptoms in Cancer and Educational Handouts. Chicago, IL: American Dietetic Association; 2004.

Constipation

Etiology Constipation is another symptom that is multifactorial in origin. It is most commonly attributed to medications—in particular opioids, but also antiemetics, antidepressants, anticholinergics, phenothiazine, 5-hydroxytryptamine-3 antagonists, iron, calcium, antacids, barium, anticonvulsants, and vinca alkaloids.3945 Metabolic abnormalities such as dehydration, hypokalemia, and hypercalcemia (the last of which slows gastric motility) may also result in constipation.53 Other causes are neurogenic (spinal cord compression, neurotoxicity) or physiologic (debility, diet, poor intake, age) in nature.39 Constipation may be the cause of other symptoms such as anorexia, early satiety, nausea, vomiting, bloating, and abdominal pain.39, 53 It may also be a first sign of bowel obstruction.45

Management A bowel management program is indicated for any patient who requires opioids, with the best results usually achieved by combining a stool softener and a bowel stimulant.45 If impaired motility is suspected, prokinetic agents may prove useful.39 Consumption of a high-fiber diet and use of bulking agents (methylcellulose, psyllium) should be recommended with caution. If the patient does not have adequate fluid intake (minimum 2-3 L/day), these measures may cause impaction; consequently, they are not indicated for persons at risk for bowel obstruction.40, 53 Table 14.5 lists dietary interventions to treat or prevent constipation, including guidelines for using fiber.

Encourage adequate fluid intake.

Recommend prunes or prune juice if tolerated.

Use of Fiber Encourage increased fiber intake only if it does not cause the patient distress.

Do not encourage fiber intake for persons at risk for or with known bowel obstruction. Encourage fiber intake only if adequate fluid intake is possible.

Increase fiber intake gradually to improve tolerance.

If adding wheat germ, bran, or flaxseed to foods, begin with 2 tsp and build up to 2 tbsp per day.

Advise limiting gas-forming foods (which may cause discomfort) or using Beano with them.

Sources: Appendix A: Tips for managing nutrition impact symptoms. In: Elliott L, Molseed L, McCallum PD, Grant B, eds. The Clinical Guide to Oncology Nutrition. 2nd ed. Chicago, IL: American Dietetic Association; 2006:241—245; Grant B, Hamilton KK. Management of Nutrition Impact Symptoms in Cancer and Educational Handouts. Chicago, IL: American Dietetic Association; 2004.

Taste Changes

Etiology Altered taste sensation, also known as dysgeusia, is a significant nutrition-related symptom in the cancer setting. It has been reported to affect 50% to 90% of patients with advanced cancer.54 The presence of chemosensory complaints (including alterations in taste and smell) is significantly correlated with reduced food enjoyment, poor nutrient intake, and decreased quality of life.14 That this issue is so prevalent in patients who are not undergoing active treatment suggests that its more significant causes are factors other than cancer therapy.54 Common causes of taste changes include smoking; dentures; dry mouth; thick saliva; poor dental hygiene; stomatitis; oral infections; micronutrient deficiencies (e.g., vitamin A, zinc, niacin); medications; nerve damage; radiation to head, neck, or cerebral areas; and advanced age.3954 Surgeries such as partial glossectomy, laryngectomy, thyroidectomy, hypophysectomy, and adrenalectomy are also known to cause reduced or altered taste sensation.39 Patients may experience either decreases or increases in taste sensitivity, particularly in response to bitter or sour stimuli,14 and often complain that foods taste metallic, distorted, or bland.54

Management Suggestions for managing dysgeusia include good oral hygiene, which is recommended to prevent infections, manage stomatitis, and maintain good oral health.39, 51 Encourage regular toothbrushing or cleansing of dentures as well as use of mouth rinses.51 Use of non-mint flavored or unflavored toothpastes and rinses is suggested for oral care done prior to eating.51 Rinsing with a baking soda and salt water solution may prove beneficial in between meals to lessen bad tastes in the mouth.51 Patients should also be monitored for the presence of candidiasis, with the appropriate treatment being prescribed to lessen issues related to dysgeusia.51 Suggestions for obtaining relief from dry mouth or thick saliva should also be provided. If nutrient deficiencies are a suspected cause of the dysgeusia, supplementation may be of benefit if not otherwise contraindicated (such as for the imminently terminal patient, or if adverse nutrient-drug interactions would occur).54 It has been suggested that cannabinoids (such as in Marinol) may enhance taste sensation in addition to stimulating appetite, and their use warrants further study for a role in treating dysgeusia.54 Table 14.6 summarizes dietary interventions to address altered taste sensation.

Other Symptoms

Less prevalent symptoms that warrant discussion include diarrhea, difficult or painful swallowing (dysphagia, odynophagia), and hiccups.45

Diarrhea may result from drugs, palliative chemotherapy or radiotherapy, bowel obstruction, malabsorption, or islet cell tumors.45 Its medical management includes opioids, particularly loperamide, or octreotide for refractory Table 14.6 Palliative Nutrition Therapy for Management of Dysgeusia39, 51

When not eating, lemon drops, gum, or mints may help mask a bad taste in the mouth.

Suggest use of marinades, spices, and herbs, particularly with meats.

Suggest that poultry, fish, eggs, cheese, or other protein sources be substituted for red meats, the taste of which may be significantly altered.

Counteract heightened tastes with other flavors. For example, use lemon juice or salt for sensitivity to sweet taste, or sweeteners for sensitivity to bitter tastes.

Use moist cooking methods, gravies, and sauces, and encourage sips of liquid with meals (especially for dry mouth).

Sources: Komucru S, Nelson K, Walsh D. The gastrointestinal symptoms of advanced cancer. Support Care Cancer. 2000;9:32-39; Grant B, Hamilton KK. Management of Nutrition Impact Symptoms in Cancer and Educational Handouts. Chicago, IL: American Dietetic Association; 2004.

chemotherapy-induced diarrhea; nutrition care should focus on rehydration and replacement of electrolytes.45

Dysphagia is often the result of mechanical obstruction caused by tumors of the mouth or esophagus, or by esophageal stricture.45 Other causes include fibrosis, nerve damage, extrinsic compression, and mucosal inflammation.45, 51 Consultation with a speech therapist may help identify appropriate food and liquid textures or swallowing techniques.51 For patients with esophageal tumors, treatment options include dilatation, brachytherapy, endoscopic stenting, endoscopic laser, or photodynamic therapy (PDT).45 In treating smaller tumors, laser therapy appears to offer better palliation than stent placement.45 However, studies comparing laser therapy with PDT suggest that PDT is safer and more effective.45 Topical anesthetics, sprays, and lozenges may help ease painful swallowing.51

Hiccups, which may be caused by diaphragmatic irritation, uremia, or medications (corticosteroids) and less commonly by hyponatremia, hypocalcemia, or myocardial infarction, are frequently seen in patients with cancer.45 Hiccups may be managed by pharyngeal stimulation techniques such as nebulized saline, palatal massage with a cotton ball, or more traditional means such as drinking from the wrong side of a cup or swallowing two teaspoons of granulated sugar.45 Baclofen is the most effective pharmacological therapy for hiccups, but may not be appropriate for patients with renal insufficiency.55

Artificial Nutrition and Hydration in Palliative Care

Whether to use artificial nutrition or hydration (ANH) has long been a difficult and sometimes controversial question facing patients with terminal cancer, as well as their physicians, families, and caregivers. American society clearly supports a person’s right to self-determination such that individuals who possess decision-making capacity have the right to make decisions regarding medical interventions according to their own reasoning and values system.56, 57 The legal consensus is that all medical interventions can be refused by patients with decision-making capacity, and that ANH, as a medical treatment, is no exception—even if refusing it results in death.57 An individual’s approach to medical decision making may involve many different religious, philosophical, and personal values, all of which deserve and require respect from the healthcare team.56

The American Dietetic Association’s position paper regarding nutrition, hydration, and feeding underscores the importance of the patient’s informed choice regarding the degree of nutrition intervention, and suggests that the palliative care plan need not exclude nutrition support while acknowledging that nutrition support may also be futile care for the terminally ill.56 In addition, it is suggested that the concept of “when in doubt, feed” applies to all patients, with the decision to stop feeding being based on the patient’s wishes, medical contraindications, or diagnosis of persistent unconsciousness with evidence of the patient’s wish to stop nutrition and hydration in that circumstance.56

Clinicians have a responsibility to educate patients, families, and healthcare team members regarding the benefits and burdens of artificial nutrition and hydration while giving due consideration to each individual’s circumstances. It has been suggested that nutrition support be considered a separate issue from hydration.58 As such, the benefits and burdens of artificial nutrition and artificial hydration are presented separately here.

Use of Artificial Nutrition

When considering whether to utilize artificial nutrition, it must be determined whether this therapy aligns with the primary goals of palliation: relief of suffering and improvement of quality of life. Healthcare providers may find it challenging to offer this therapy; likewise, patients and families find it difficult to decide whether to initiate or discontinue it. For all involved, an understanding of current relevant research is critical to evaluating, for each individual case, whether the benefit of artificial nutrition outweighs the burden.

Benefits In a review of nonrandomized, controlled clinical trials, enteral versus routine nutrition therapy in patients receiving palliative care resulted in no significant impact on body weight, while in patients undergoing chemotherapy or radiotherapy there was no effect on mortality (esophageal cancer patients) or infectious complications (leukemia patients).59 A meta-analysis of randomized clinical trials of nutrition support (NS) enrolling surgical patients found that NS had no significant effect on mortality, mixed effects on body weight, and minimal effects on biochemical outcomes.59 An observational study of patients in a palliative care unit in Taiwan noted that there was no significant impact of artificial nutrition and hydration on survival.60

In contrast, enteral nutrition has been found to reduce length of stay and infections versus parenteral nutrition in patients undergoing surgical procedures for various stages of gastrointestinal cancer.59 Another review demonstrated that home parenteral nutrition when initiated in cancer patients with intestinal obstruction at a time when they had good life expectancy, significantly improved quality of life up until several weeks before death.59 In other studies, enteral or parenteral nutrition has been shown to increase body weight and performance status, although in one study this effect was limited to patients with a survival time of greater than three months.59 In patients surviving more than three months, approximately two-thirds were assessed as having improved quality of life. In another study of patients who received either supplemental oral or parenteral nutrition (when intake decreased below specified amounts) along with other treatments, the as-treated analysis showed improvement in survival and other outcomes.61 In a qualitative study evaluating the experiences of patients with advanced cancer receiving home parenteral nutrition (HPN), patients and family members reported physical, social, and psychological benefits from the HPN, including relief that nutritional needs were met, and increased energy, strength, activity, and quality of life.62 It is noteworthy that these patients were able to eat orally and received HPN as a supplemental measure.

Burdens and Risks A large study of patients with head and neck cancer who underwent gastrostomies, and most of whom had advanced disease, showed a complication rate of 42% with 3 fatalities following use of artificial nutrition.63 Wound infections were the most common severe complication reported; other complications included abdominal pain and leakage of gastric acids. As noted in Dy’s review,59 several other studies reported similar results. When a percutaneous endoscopic-placed gastrostomy (PEG) could not be placed, an open gastrostomy was sometimes required. Additional adverse effects associated with HPN reported by Dy included catheter-related issues, such as bacteremia, occlusions, and dislocations, as well as an estimation that at least 1% of deaths may be attributable to HPN.59

In another review reflective of the general population using HPN, burdens included disruption of common activities (work, travel, going to the bathroom, sleeping, and maintaining employment), fatigue, fear of complications or hospitalizations, loss of sexual interest, and concern about the burden on caregivers.64 As reported by Orrevall et al. in another qualitative study, similar burdens were noted; patients reported that HPN negatively affected sleep, increased urinary frequency, and restricted participation in social and family activities.62

Recommendations Regarding Use of Artificial Nutrition As discussed, enteral or parenteral nutrition may be beneficial in limited circumstances, but is not without significant risks or burdens. Based on clinical practice guidelines and position papers as reviewed by Dy, enteral or parenteral nutrition may be of benefit only in those patients with gastrointestinal obstruction or other conditions precluding oral intake.59 Published guidelines regarding palliative or terminal nutrition for patients with progressive cancer suggest that the use of enteral or parenteral nutrition is not recommended in patients with a prognosis of less than 3 months or a Karnofsky score of less than 50%.10 Suggested criteria for the use of parenteral nutrition in advanced cancer, when enteral nutrition is not an option, are the potential survival benefit, expected duration of more than 6 weeks, Karnofsky score of more than 50%, and the presence of a supportive home environment.65 Psychological support and counseling are recommended for patients not meeting these criteria, as they are unlikely to survive long enough to benefit from the provision of artificial nutrition.59

Artificial Hydration

Although it has been discussed in the literature for more than 20 years, the decision of whether to provide artificial hydration (AH) to terminally ill patients remains a controversial and much-debated topic.66 A review of the literature regarding the attitudes and actions of medical professionals indicates considerable differences in both understanding and practice across care settings. A 1994 review, which included studies evaluating the use of AH for patients with terminal conditions from the United States, United Kingdom, Canada, and Switzerland, found that 27% to 73% of physicians would prescribe AH to terminal cancer patients; with as many as 88% reporting that if the IV infiltrated, AH would be restarted for palliative care patients; and as many as 40% being willing to replace or relocate IV access if needed to continue AH.67 It was also noted that terminally ill patients dying from malignancies in hospitals were more likely to receive AH than those dying in hospice or at home.67

In 2001, McAulay indicated that hospital nurses are more likely to believe that dehydration causes unpleasant symptoms; this author suggests that the use of AH in hospital settings may be related to the negative perception of “giving up” should fluids be discontinued or not offered.68 Conversely, Zer-wekh noted that hospice, oncology, and gerontology specialists support her assertion that AH should not routinely be given to dying patients based on the following observations: (1) terminal patients remained comfortable during prolonged periods of dehydration, and (2) those hospitalized for symptom relief who were receiving AH developed many signs of fluid overload.69

More recently, a study assessed knowledge, attitudes, and behavioral intentions of hospital nurses toward providing ANH for terminal cancer patients in Taiwan.70 While the nurses surveyed viewed ANH as having more burden than benefit, their behavioral intentions still favored provision of ANH.70 In an informal survey of U.S. nurses designed to elicit beliefs regarding benefits of ANH in terminal care, home health nurses were divided in their beliefs, while the hospice nurses unanimously believed that ANH leads to further discomfort.71 Van der Riet et al. found that Australian palliative care physicians and nurses believe dehydration to be a normal component of the dying process that does not result in thirst or suffering, with these healthcare providers suggesting that AH may contribute to suffering rather than relieve it.72

As with AN, it is important that the benefits versus burdens of AH therapy be carefully considered before it is employed. A clear understanding of the potential beneficial and detrimental effects of dehydration and rehydration in terminal illness is of key importance to this evaluation.

Dehydration Dehydration is defined as a fall in the body’s water content often accompanied by a loss of sodium and other electrolytes.1 General features of dehydration include reduced skin turgor, altered renal function, electrolyte abnormalities, dry mouth, headaches, nausea, vomiting, cramps, lethargy, hypotension, and impaired cognitive function (ranging from confusion to coma).67, 68, 73 Thirst occurs as a result of increased plasma osmolality (hypernatremia) or decreased intravascular volume.74 The core of the debate about AH therapy is whether the experience of dehydration in the terminally ill patient differs from that in the patient who is not terminal, if it is distressing, or if it tenders any benefit.

Potential Benefits Although the findings do not come from randomly controlled trials, many observed possible benefits of dehydration have been reported in the literature. Dehydration may result in reduced urine output, gastrointestinal fluids, and pulmonary secretions, which may in turn reduce incontinence, need for catheterization, vomiting, coughing, choking, use of tracheal suction, and sensation of drowning.75, 76 Reduction in edema, and therefore pressure on internal organs, may decrease pain.77 It has also been suggested that analgesia or anesthesia may result from metabolic imbalances (acidosis, hypernatremia, and hypercalcemia), hypovolemia, or the production of opioid peptides and ketones that occurs with both dehydration and malnutrition.67 In contrast, other studies have found no differences in either electrolyte balance or comfort level in hydrated versus dehydrated patients.78

Thus, while some suggest that decreased awareness and therefore decreased suffering can be attributed to electrolyte imbalances, others suggest that normal electrolyte balance is the reason that a dehydrated state promotes comfort in the terminally ill.67, 69 Decreases in the need for analgesia, incidence of distressing symptoms (vomiting, choking) and pain as well as increased mental acuity have also been observed by those working with dehydrated, terminally ill patients.6878 Other postulated advantages of dehydration are somnolence and peaceful death.67

Potential Detrimental Effects Although many researchers have reported beneficial effects of terminal dehydration, some contend that this condition produces detrimental effects that warrant consideration when contemplating whether to employ AH. Physiological changes attributed to dehydration include postural hypotension, altered blood viscosity and electrolyte imbalances, and decreased skin perfusion, urine output, and fluid volume.67 Proposed negative effects of these changes include increased risk of pulmonary emboli or deep vein thrombosis, increased risk of pressure sores, and increased risk of urinary tract infection, constipation, and gastrointestinal tract pain.67,79 Apathy, depressive states (ranging from lethargy to coma), and neuromuscular irritability and twitching are said to result from electrolyte imbalances; postural hypotension may increase the risk of falls.67 Nevertheless, several studies have reported that electrolyte levels remain normal in dying patients, and that even those patients whose levels are abnormal remain comfortable.73 Dehydration is also noted to cause restlessness, confusion, and potentially myoclonus and seizures in patients receiving opioid therapy without fluid intake,79 although van der Riet et al. note that the occurrence of seizures is rare.80

Dry mouth and thirst—terms that are often used interchangeably in the literature81—along with nausea, vomiting, and fatigue, are thought to be the most commonly experienced symptoms of terminal dehydration.82 Dry mouth, which is the most consistently reported symptom, has also been attributed to medications (opioids, phenothiazines, antihistamines, and antidepressants), history of local radiation therapy, mouth breathing, food debris or dried sputum coating the oral mucosa, and oral infection.69, 77, 83 McCann et al. found that in 63% of patients studied who were dying of cancer or stroke, thirst was not reported or was reported only on initial assessment, and that it was easily relieved with good oral care and ice chips.81 Phillips et al. demonstrated a reduced perception of thirst in dehydrated, healthy, elderly men, suggesting that reduced thirst perception may be related more to age or cognitive function.84

Dehydration may be physiologically different in terminal illness than in nonterminal illness, which may partially account for the disparity between thought and observation. Billings described dehydration as being hypernatremic (loss of more water than salt), hyponatremic (loss of more salt than water), or eunatremic (proportionate loss of salt and water).85 While hypernatremic and hyponatremic dehydration may result in profound or mild thirst, respectively,77 Billings suggests that eunatremic dehydration, which occurs over a long period of time, is common in end-stage illness and leads to a negligible amount of thirst.85

Rehydration Potential Benefits Patients may be artificially rehydrated by intravenous, subcutaneous (hypo-dermatoclysis), and rectal routes as well as through continued use of a feeding tube.66 Often, the perceived benefits of hydration are ideological in nature. Physicians and family may feel that hydration is a way to demonstrate caring and to honor the sanctity of life.78 Clinicians or family may wish to provide hydration to avoid feeling as though they have abandoned the patient, and they may see this therapy as a standard of care to help prevent distress.78

Suggested clinical benefits of AH are that it may provide comfort by preventing confusion, restlessness, and neuromuscular irritability; may improve myoclonus and sedation; may decrease thirst and dry mouth; may decrease cognitive impairment; and may prolong survival.77, 82 Smith and Andrews assert that there is a role for low-volume AH in patients with cancer by increasing comfort through alleviation of symptoms of opioid toxicity.73 It is implied by reviewing the potential detriments of dehydration that AH may also prevent risks associated with reduced blood viscosity, urine output, and skin perfusion as well as postural hypotension, with secondary benefits including relief of constipation and reduced risk of falls.

It is worthy to note that many reported benefits are considered to be observational, rather than research-based.77, 82 A significant quantity of data exists indicating that AH does not prolong life. For example, Smith reviewed several studies that found no difference in survival of patients receiving such treatments as nasogastric tube feedings, TPN, or IV therapy versus patients receiving less aggressive treatment and no ANH.78 In fact, in some of these studies, patients who did not receive AH survived longer than those who did. More recent studies suggested that symptoms of myoclonus, sedation, dry mouth, thirst, and nausea may be relieved in certain patients, and that further study of the effect of AH on these conditions is warranted.77, 86

Potential Detrimental Effects In Bavin’s review, suggested possible negative clinical effects of rehydration include increased pulmonary and gastric secretions leading to increased congestion, rattle, nausea, and vomiting; increased peritumor, cerebral, and peripheral edema; catheter site infection; and increased urine output.77 Other negative effects include repeated needle punctures, congestive heart failure, increased intracranial pressure, tumor swelling, and exacerbation of ascites.82 In a 2004 study, physicians and nurses in oncology and palliative care settings frequently reported increased symptoms of fluid retention (edema, pleural effusions/ascites, bronchial secretion) in patients with lung and gastric cancer who received AH.87 Another study evaluating the use of AH in acute versus palliative care settings found a significantly higher use of diuretics in the acute care group, which also had the highest mean hydration volumes, suggesting the potential for overhydration symptoms in these patients.88 Nonclinical negative effects include invasiveness of intravenous access, diversion from holistic care, and the potential for AH to be a barrier to physical affection and closeness with the patients’ loved ones.77

Because of associated ethical and other difficulties, few well-designed studies exist to help clarify the benefits and burdens of AH. As a result, most claims as to its benefits and burdens are anecdotally supported.7782

Recommendations Regarding Use of Artificial Hydration Artificial hydration remains controversial, with no clear evidence for or against its use for palliation. Indeed, consensus-based standards or guidelines for AH are lacking. Several authors propose that key factors be considered when AH is being deliberated. Dalal and Bruera89 proposed the following as useful questions to consider:

1. Is the patient dehydrated?

2. What are the symptoms caused and/or aggravated by dehydration?

3. What are the expected advantages of rehydration?

4. What are the disadvantages of hydration?

5. What are the views of the patient and family?

6. What are the individualized goals of care?

Some practitioners have stressed a holistic approach to caring for patients with advanced cancers, and have suggested that the interdisciplinary team, including a social worker, chaplain, and dietitian, participate in assessing the anticipated effects of any intervention on spiritual, social, and psychological care.77 Initiating or continuing hydration, as well as nutrition, may be an important means of honoring beliefs and values of some cultural or religious groups.90 Assessment of survival is also important, as a longer prognosis (weeks or months versus days) may significantly influence the decision, especially if patients need a little more time to express their end-of-life needs and wishes.77

Ethics and Decision Making

Ethics is a key component of decision making when either artificial nutrition or hydration is being considered. The American Dietetic Association (ADA)

describes the skill of ethical decision making as focusing on the patient’s best interests while allowing all stakeholders to participate in the decision-making process, and balancing rules, goals, and virtues to achieve a morally justified decision.56 Key principles are that of autonomy (honoring the patient’s wishes), nonmaleficence (doing no harm), beneficence (doing what is in the patient’s best interests), justice (doing what is fair), informed consent (providing succinct explanation of pros and cons), and capacity (ensuring the patient understands the information needed to give informed consent).56, 77

According to the ADA’s position paper, the dietitian has a duty to facilitate collaborative ethical deliberation.56 First, the dietitian needs sound technical judgment on how and whether, in the given situation, ANH can achieve desired goals. Second, the dietitian should, as a primary contact for patient and family regarding nutrition and feeding, assess the patient’s wishes, ensure that feeding and hydration issues are discussed, and ensure that all appropriate options are considered. Finally, the dietitian has a duty to understand and explain the position of the ADA, whether or not that position conflicts with the dietitian’s own personal professional opinion.

SUMMARY The primary focus of palliative care is prevention of suffering and enhanced quality of life. Although it is commonly considered to be synonymous with terminal care, palliative care is not limited to persons forgoing curative therapy; indeed, it may be provided concurrently with aggressive measures. While it may be initiated at any stage of disease, its use should be considered upon diagnosis and at regular intervals throughout the course of care. Palliative care may be delivered through a variety of systems: inpatient, outpatient, nursing home, private-practice consultation, and home care. In particular, hospice services are widely recognized for providing palliative care at the end of life.

Provision of palliative care is an interdisciplinary process involving a wide variety of professionals. Regardless of the setting where care is delivered, the dietitian fills an important role on the team. Given that as many as 80% of palliative care patients experience anorexia, weight loss, and a broad range of gastrointestinal symptoms, the dietitian has the training and skills required to assist with symptom management, help improve function, and enhance quality of life for these individuals. The dietitian is responsible for assessing the patient’s needs and wishes at regular intervals and as care goals change, and for designing and implementing a nutrition care plan accordingly. Additionally, the dietitian should take an active role in educating and advising patients, families, and members of the healthcare team.

The decision of whether to use artificial nutrition and hydration in the setting of advanced cancer remains a difficult and controversial topic not only for patients and families, but often among healthcare professionals. Available evidence suggests that artificial nutrition may have palliative benefit in specific circumstances. However, evidence to support a consensus on the palliative use of artificial hydration is lacking. Assisting with decision making requires educating those involved regarding the benefits and burdens, both known and perceived, of initiating, abstaining from, or withdrawing these therapies. The dietitian can help all parties involved in patient care by providing a balanced perspective regarding ANH, and by facilitating collaborative deliberation regarding the overall nutrition care plan.

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