MANAGING PHYSIOLOGIC RESPONSES TO ILLNESS
Patients approaching the end of life experience many of the same symptoms, regardless of their underlying disease processes. Symp-toms in terminal illness may be caused by the disease, either di-rectly (eg, dyspnea due to chronic obstructive lung disease) or indirectly (eg, nausea and vomiting related to pressure in the gastric area), by the treatment for the disease, or by a coexisting disorder that is unrelated to the disease.
The goals of symptom management at the end of life are to completely relieve the symptom when possible, or to decrease the symptom to a level that the patient can tolerate when it cannot be completely relieved. Medical interventions may be aimed at treat-ing the underlying causes of the symptoms. Pharmacologic and nonpharmacologic methods for symptom management may be used in combination with medical interventions to modify the physiologic causes of symptoms. For example, some patients who develop pleural effusion secondary to metastatic cancer may ex-perience temporary relief of the associated dyspnea following thoracentesis, an invasive medical procedure in which fluid is drained from the pleural space. In addition, pharmacologic man-agement with low-dose oral morphine is very effective in relieving dyspnea, and guided relaxation may reduce the anxiety associated with the sensation of breathlessness. As with pain, the principles of pharmacologic symptom management are the smallest dose of the medication to achieve the desired effect, avoidance of poly-pharmacy, anticipation and management of medication side ef-fects, and creation of a therapeutic regimen that is acceptable to the patient based on his or her goals for maximizing quality of life.
As with pain management, patients may elect to tolerate higher symptom levels in exchange for greater independence, mobility, alertness, or other priorities. Anticipating and planning interven-tions for symptoms that have not yet occurred is a cornerstone of end-of-life care. Both patients and family members cope more ef-fectively with new symptoms and exacerbations of existing symp-toms when they know what to expect and how to manage it. Hospice programs typically provide “emergency kits” containing ready-to-administer doses of a variety of medications that are use-ful to treat symptoms in advanced illness. Family members can be instructed to administer a prescribed dose from the emergency kit, often avoiding prolonged suffering for the patient as well as re-hospitalization for symptom management.
Pain and suffering are among the most feared consequences of cancer (Roth & Breitbart, 1996). Pain is a significant symptom for many cancer patients throughout their treatment and disease course; it results both from the disease and the modalities used to treat it. Numerous studies have indicated that patients with ad-vanced illness, particularly cancer, experience considerable pain (Field & Cassel, 1997; Jacox, Carr, & Payne, 1994). While the means to relieve pain have existed for many years, the continued, pervasive undertreatment of pain has been well documented (American Pain Society, 1999; Jacox et al., 1994). It is estimated that as many of 70% of patients with advanced cancer experience severe pain (Jacox et al., 1994; World Health Organization, 1990). The impact of poorly managed pain on patients’ psychological, emotional, social, and financial well-being has attracted con-siderable research interest, but practice has been slow to change (Spross, 1992).
Patients who have an established regimen of analgesics should continue to receive those medications as they approach the end of life. Inability to communicate pain should not be equated with the absence of pain. While most pain can be managed effectively using the oral route, as the end of life nears patients may be less able to swallow oral medications due to somnolence or nausea. Patients who have been receiving opioids should continue to re-ceive equianalgesic doses via the rectal or sublingual routes. Con-centrated morphine solution can be very effectively delivered by the sublingual route, as the small liquid volume is well tolerated even when the patient cannot swallow. As long as the patient con-tinues to receive opioids, a regimen to combat constipation must be implemented. If the patient cannot swallow laxatives or stool softeners, rectal suppositories or enemas may be necessary.
The nurse should teach the family about continuation of com-fort measures as the patient approaches the end of life, how to ad-minister analgesics via alternate routes, and how to assess for pain when the patient cannot verbally report pain intensity. Because the analgesics administered orally or rectally are short-acting, typically scheduled as frequently as every 3 to 4 hours around the clock, there is always a strong possibility that the patient approaching the end of life will die in close proximity to the time of analgesic ad-ministration. If the patient is at home, family members adminis-tering analgesics need to be prepared for this possibility. They will need reassurance that they did not “cause” the death of the patient by administering a dose of analgesic medication (see Chart 13-3).
Dyspnea is an uncomfortable awareness of breathing that is common in patients approaching the end of life (Brant, 1998). Dyspnea is a highly subjective symptom that often is not associ-ated with visible signs of distress, such as tachypnea, diaphoresis, or cyanosis. Patients with primary lung tumors, lung metastases, pleural effusion, and restrictive lung disease may experience sig-nificant dyspnea. Although the underlying cause of the dyspnea can be identified and treated in some cases, the burdens of addi-tional diagnostic evaluation and treatment aimed at the physio-logical problem may outweigh the benefits. The treatment of dyspnea varies depending on the patient’s general physical con-dition and imminence of death. For example, a blood transfusion may provide temporary symptom relief for the anemic patient earlier in the disease process; however, as the patient approaches the end of life the benefits are typically short-lived or absent.
As is true in pain assessment and management, the patient’s re-port of dyspnea must be believed. Also like the experience of physical pain, the meaning of the dyspnea to the patient may in-crease his or her suffering. For example, the patient may interpret increasing dyspnea as a sign that death is approaching. For some patients, sensations of breathlessness may invoke frightening im-ages of drowning or suffocation, and the resulting cycle of fear and anxiety may create even greater sensations of breathlessness. Therefore, the nurse should conduct a careful assessment of the psychosocial and spiritual components of the symptom (see Chart 17-5). Physical assessment parameters include:
· Symptom intensity, distress, and interference with activities (scale of 0 to 10)
· Auscultation of lung sounds
· Assessment of fluid balance
· Measurement of dependent edema (circumference of lower extremities)
· Measurement of abdominal girth
· Skin color
· Sputum quantity and character
To determine the intensity of the symptom and its interference with daily activities, patients can be asked to self-report using a scale of 0 to 10, where 0 is no dyspnea and 10 is the worst imag-inable dyspnea. Measurement of the patient’s baseline before treatment and subsequent measures during exacerbation of the symptom, periodically during treatment, and whenever the treat-ment plan changes will provide ongoing objective evidence for the efficacy of the treatment plan. In addition, physical assessment findings may assist in locating the source of the dyspnea and se-lecting nursing interventions to relieve the symptom. The com-ponents of the assessment will change as the patient’s condition changes. For example, when the patient who has been on daily weights can no longer get out of bed, the goal of comfort may out-weigh the benefit of continued weights. Like other symptoms at the end of life, dyspnea can be managed effectively in the absence of assessment and diagnostic data (ie, arterial blood gases) that are standard when the patient’s illness or symptom is reversible.
Nursing management of dyspnea at the end of life is directed toward administering medical treatment for the underlying pathol-ogy, monitoring the patient’s response to treatment, assisting the patient and family to manage anxiety (which exacerbates dyspnea),altering the perception of the symptom, and conserving energy (Chart 17-7). Pharmacologic intervention is aimed at modifying lung physiology and improving performance as well as altering the perception of the symptom. Bronchodilators and cortico-steroids are examples of medications used to treat underlying ob-structive pathology, thereby improving overall lung function. Low doses of opioids are very effective in relieving dyspnea, although the mechanism of relief is not entirely clear. Although dyspnea in terminal illness is typically not associated with dimin-ished blood oxygen saturation, low-flow oxygen often provides psychological comfort to the patient and the family, particularly in the home setting.
As discussed above, dyspnea may be exacerbated by anxiety, and anxiety may trigger episodes of dyspnea, setting off a respi-ratory crisis in which patient and family may panic. For patients receiving care at home, patient and family instruction should in-clude anticipation and management of crisis situations and a clearly communicated emergency plan. Patients and families should be instructed about medication administration, condition changes that should be reported to the physician and nurse, and strategies for coping with diminished reserves and increasing symptomatology as the disease progresses. The patient and fam-ily need reassurance that the symptom can be effectively managed at home without the need for activation of the emergency med-ical services or hospitalization and that a nurse will be available at all times via telephone or to conduct a visit.
Anorexia and cachexia are common problems in the seriously ill. The profound changes in the patient’s appearance and his or her concomitant lack of interest in the socially important rituals of mealtime are particularly disturbing to families.
The approach to the problem varies depending on the patient’s stage of illness, level of disability associated with the illness, and desires. The anorexia-cachexia syndrome is characterized by disturbances in carbohydrate, protein, and fat metabolism, endocrine dysfunc-tion, and anemia. The syndrome results in severe asthenia (loss of energy). Although causes of anorexia may be controlled for a pe-riod of time, progressive anorexia is an expected and natural part of the dying process. Anorexia may be related to or exacerbated by situational variables (eg, the ability to have meals with the fam-ily versus eating alone in the “sick room”), progression of the dis-ease, treatment for the disease, or psychological distress. The patient and family should be instructed in strategies to manage the variables associated with anorexia. Table 17-2 summarizes nursing measures and patient and family teaching for managing anorexia.
A number of pharmacologic agents are commonly used to stim-ulate appetite in anorectic patients. Commonly used medications for appetite stimulation include dexamethasone (Decadron), cypro-heptadine (Periactin), megestrol acetate (Megace), and dronabi-nol (Marinol). Dexamethasone initially increases appetite and may provide short-term weight gain in some patients. However, therapy may need to be discontinued in the patient with a longer life expectancy, as after 3 to 4 weeks corticosteroids interfere with the synthesis of muscle protein. Cyproheptadine may be used when corticosteroids are contraindicated, such as when the pa-tient is diabetic. It promotes mild appetite increase but no ap-preciable weight gain. Megestrol acetate produces temporary weight gain of primarily fatty tissue, with little effect on protein balance. Because of the time required to see any effect from this agent, therapy should not be initiated if life expectancy is less than 30 days. Finally, dronabinol is a psychoactive compound found in cannabis that may be helpful in reducing nausea and vomiting, appetite loss, pain, and anxiety, thereby improving intake in some patients. However, dronabinol is not as effective as the other agents for appetite stimulation in most patients. Although the use of these agents may cause temporary weight gain, their use is not associated with an increase in lean body mass in the terminally ill. Therapy should be tapered or discontinued after 4 to 8 weeks if there is no response (Wrede-Seaman, 1999).
Cachexia refers to severe muscle wasting and weight loss associated with illness. Although anorexia may exacerbate cachexia, it is not the primary cause. Cachexia is associated with changes in metab-olism that include hypertriglyceridemia, lipolysis, and accelerated protein turnover, leading to depletion of fat and protein stores (Plata-Salaman, 1997). However, the pathophysiology of cachexia in terminal illness is not well understood. In terminal illness, the severity of tissue wasting is greater than would be expected from reduced food intake alone, and typically increasing appetite or food intake does not reverse cachexia in the terminally ill.
Anorexia and cachexia differ from starvation (simple food deprivation) in several important ways. Appetite is lost early in the process, the body becomes catabolic in a dysfunctional way, and supplementation by gastric feeding (tube feeding) or par-enteral nutrition in advanced disease does not replenish lost lean body mass. At one time it was believed that cancer patients with rapidly growing tumors developed cachexia because the tumor created an excessive nutritional demand and diverted nutrients from the rest of the body.
Recent research links cy-tokines produced by the body in response to a tumor to a com-plex inflammatory-immune response present in patients whose tumors have metastasized, leading to anorexia, weight loss, and altered metabolism. An increase in cytokines occurs not only in cancer but also in AIDS and many other chronic diseases (Plata-Salaman, 1997).
Along with breathing, eating and drinking are essential to survival throughout one’s lifetime. As patients near the end of life, their bodies’ nutritional needs change, their desire for food and fluid may diminish, and they may no longer be able to use, eliminate, or store nutrients and fluids adequately. Eating, feeding, and shar-ing meals are important social activities in families and commu-nities, and food preparation and enjoyment are linked to happy memories, strong emotions, and hopes for survival. For the patient with serious illness, food preparation and mealtimes often become battlegrounds where well-meaning family members argue, plead, and cajole to encourage the ill person to eat. It is not unusual for seriously ill patients to lose their appetites entirely, to develop strong aversions for foods they have enjoyed in the past, or to crave a particular food to the exclusion of all other foods.
Although nutritional supplementation may be an important part of the treatment plan in early or chronic illness, unintended weight loss and dehydration are expected sequelae of progressive illness. As illness progresses, patients, families, and clinicians may believe that without artificial nutrition and hydration, the termi-nally ill patient will “starve,” causing profound suffering and has-tened death. However, starvation should not be viewed as the failure to implant tubes for nutritional supplementation or hy-dration of terminally ill patients with irreversible progression of disease. Studies have demonstrated that terminally ill patients who were hydrated had neither improved biochemical parame-ters nor improved states of consciousness (Waller, Hershkowitz Adunsky, 1994). Similarly, survival was not increased when terminally ill patients with advanced dementia received enteral feeding (Meier, Ahronheim, Morris et al., 2001). Further, in pa-tients who are close to death there are beneficial effects to with-holding or withdrawing artificial nutrition and hydration, such as decreased urine output and incontinence, decreased gastric flu-ids and emesis, decreased pulmonary secretions and respiratory distress, and decreased edema and pressure discomfort (Zerwekh, 1987).
As the patient approaches the end of life, families and health care providers should offer the patient what he or she desires and can most easily tolerate. Nurses should instruct the family how to separate feeding from caring by demonstrating love, sharing, and caring by being with the loved one in other ways. Preoccupation with appetite, feeding, and weight loss diverts energy and time that the patient and family could use in other meaningful activi-ties. The following are tips to promote nutrition for the termi-nally ill patient:
· Offer small portions of favorite foods.
· Do not be overly concerned about a “balanced” diet.
· Cool foods may be better tolerated than hot foods.
· Offer cheese, eggs, peanut butter, mild fish, chicken, or turkey. Meat (especially beef) may taste bitter and unpleasant.
· Add milkshakes, “Instant Breakfast” drinks, or other liquid supplements.
· Add dry milk powder to milkshakes and cream soups to in-crease protein and calorie content.
· Place nutritious foods at the bedside (fruit juices, milk-shakes in insulated drink containers with straws).
· Schedule meals when family members can be present to provide company and stimulation.
· Avoid arguments at mealtime.
· Assist the patient to maintain a schedule of oral care. Rinse the mouth after each meal or snack. Avoid mouthwashes that contain alcohol. Use a soft toothbrush. Treat ulcers or lesions. Make sure dentures fit well.
· Treat pain and other symptoms.
· Offer ice chips made from frozen fruit juices.
· Allow the patient to refuse foods and fluids.
Many patients may remain alert, arousable, and able to commu-nicate until very close to death. Others may sleep for long inter-vals and awaken only intermittently, with eventual somnolence until death. Delirium refers to concurrent disturbances in level of consciousness, psychomotor behavior, memory, thinking, atten-tion, and sleep-wake cycle (Brant, 1998). In some patients, a pe-riod of agitated delirium may precede death, sometimes causing families to be hopeful that the suddenly active patient may be get-ting better. Confusion may be related to underlying, treatable conditions such as medication side effects or interactions, pain or discomfort, hypoxia or dyspnea, a full bladder or impacted stool. In patients with cancer, confusion may be secondary to brain metastases. Delirium may also be related to metabolic changes, infection, and organ failure.
The patient with delirium may become hypoactive or hyper-active, restless, irritable, and fearful. Sleep deprivation and hal-lucinations may occur. If treatment of the underlying factors contributing to these symptoms bring no relief, a combination of pharmacologic intervention with neuroleptics or benzodiazepines may be effective in decreasing distressing symptoms. Haloperidol (Haldol) may reduce hallucinations and agitation. Benzodiazepines (eg, lorazepam [Ativan]) can reduce anxiety but will not clear the sensorium and may contribute to worsening cognitive impair-ment if used alone.
Nursing interventions are aimed at identifying the underlying causes of delirium, acknowledging the family’s distress over its oc-currence, reassuring them about what is normal, teaching the family how to interact with and ensure safety for the patient with delirium, and monitoring the effects of medications used to treat severe agitation, paranoia, or fear. Confusion may mask the patient’s unmet spiritual needs and fears about dying. Spiritual inter-vention, music therapy, gentle massage, and therapeutic touch may provide some relief. Reducing environmental stimuli, avoiding harsh lighting or very dim lighting (which may produce disturbing shadows), the presence of familiar faces, and gentle reorientation and reassurance are also helpful.
Clinical depression should not be accepted as an inevitable con-sequence of dying, nor should it be confused with sadness and an-ticipatory grieving, which are normal reactions to the losses associated with impending death. Emotional and spiritual sup-port and control of disturbing physical symptoms are appro-priate interventions for situational depression associated with terminal illness. The psychological sequelae of cancer pain have been linked to suicidal thought and less frequently to carrying out a planned suicide (Ripamonti, Filiberti, Totis et al., 1999). Can-cer patients with advanced disease are especially vulnerable to delirium, depression, suicidal ideation, and severe anxiety (Roth
Breitbart, 1996). Higher levels of debilitation predict higher levels of pain and depressive symptoms, and the presence of pain doubles the likelihood of developing major psychiatric complica-tions of illness (Roth & Breitbart, 1996). Patients and their fam-ilies must be given space and time to experience sadness and to grieve, but patients should not have to endure untreated depres-sion at the end of their lives. An effective combined approach to clinical depression includes relief of physical symptoms, attention to emotional and spiritual distress, and pharmacologic inter-vention with psychostimulants, selective serotonin reuptake in-hibitors (SSRIs), and tricyclic antidepressants (Block, 2000).