SYMPTOMS AND SYMPTOM MANAGEMENT
Many physical and psychological symptoms accompany the end of life. In one study, 1,000 cancer patients had a median of eleven symptoms during the terminal phase of illness, many of which affect the patient's quality of life. Assessment and management of common symptoms are thus integral to a balanced approach to end-of-life care. Because of the multidimensional nature of many symptoms, an interdisciplinary team approach to assessment and management is essential. Such an interdisciplinary team calls for the expertise of nurses, physicians, social workers, nursing assistants, spiritual care providers, and expressive therapists.
Prevalence and Relevance of Symptoms
Pharmacological and nonpharmacological efforts to alleviate the symptoms seek to accommodate the patient's desires. For example, if a patient has requested to be as alert as possible until death, and if the same patient needs an antiemetic agent to control nausea and vomiting, the common side effect of sedation represents an unacceptable tradeoff to the patient. If, on the other hand, the patient desires total control of the nausea and vomiting, even at the expense of alertness, such medication would be appropriate. The goal of symptom management is quality of life.
Fatigue. Fatigue is the most prevalent end-of-life symptom, second only to pain. In a study by Conill, fatigue was present in 80 percent of 176 palliative care patients. There is not a universal definition of fatigue. Patients often speak of weakness, easy tiring, or inability to perform the activities of daily living. According to death experts Linda Tyler and Arthur Lipman, fatigue is a multifaceted symptom. Tyler and Lipman identify the following causes of fatigue: anemia, pain, depression, insomnia, dehydration, metabolic disease process, and side effects of drugs, especially opioids that cause central nervous system (CNS) depression.
Patients may be reluctant to report fatigue because they are unaware that there is treatment for this symptom. A thorough assessment, examining patterns of fatigue, activity, sleep, and interpersonal relationships, is essential in determining appropriate interventions. Healthcare professionals must ascertain the impact of fatigue on the patient's and family's quality of life.
Nonpharmacological interventions include educating patients and families about the disease process and reviewing their goals of care. Energy conservation or rest periods, along with good sleeping habits, enable patients to "bank" energy for more active times. Patients can also conserve energy by using devices such as walkers, bedside commodes, and wheelchairs.
Pharmacological interventions, which address the underlying cause of the fatigue (e.g., antidepressants or antihistamines for insomnia), may decrease the fatigue a patient is experiencing. CNS stimulants, such as methylphenidate (Ritalin), are especially helpful in treating fatigue caused by opioid sedation. According to Tyler and Lipman, corticosteroids (dexamethasone) may be effective in treating this symptom, even when the etiology is unknown.
Anorexia. Anorexia is a loss of the desire to eat or a loss of appetite accompanied by a decreased food intake. It is frequently associated with cachexia and progressive weight loss. The etiology of the cachexia/anorexia syndrome is unknown and may involve numerous physiologic mechanisms.
Causes of anorexia include oral or systemic infection, which may produce discomfort during eating; unresolved pain; depression; and gastrointestinal symptoms such as chronic nausea and vomiting, delayed gastric emptying, constipation, and/or diarrhea. As with other symptoms, treatment is based on the patient's goals. If eating is desirable, efforts to alleviate anorexia are initiated. Family and caregivers are taught about food preparation. If early satiety is a problem, serving smaller, frequent meals may be helpful. Under such circumstances it is important to eliminate strong odors while cooking.
Pharmacological interventions can stimulate appetite. Corticosteroids such as dexamethasone (Decadron) are cost-effective agents that enhance appetite and improve the sense of well-being. Appetite stimulants such as megestrol acetate (Megace) may be helpful. According to physician Walter Forman and educator Denice Sheehan, the cannabinoid dronabinal (Marinol) may also be effective, despite continuing controversy over its use for relief of gastrointestinal symptoms. Because eating is often a social event, the loss of appetite is emotionally trying for patients and caregivers.
Dehydration. Researcher Frederick Burge defines terminal dehydration as a clinical state in which dying patients are no longer able to consume adequate fluid volumes. According to nurse researcher Joyce Zerwekh, fluid deficits are common as a patient approaches death. Identifying the cause of the dehydration is not as important as identifying the goals of care of the patient and family. It is imperative that the patients and their caregivers be involved in all decisions related to food and fluids at the end of life. Artificial hydration should never become an end in itself.
Dehydration was once considered painful for dying patients. But there are many advantages to dying in a state of dehydration. As a patient becomes dehydrated, gastrointestinal fluids decrease, limiting nausea and vomiting. Lessened pulmonary secretions alleviate breathlessness and cough. Swelling of the hands and feet are less likely to occur because peripheral edema is reduced. Patients who are in a complete state of dehydration often experience the metabolic disturbance known as ketoacidosis, which seems to produce an analgesic effect that may improve a patient's sense of well being. Families are often more comfortable in an environment that limits the use of artificial hydration via tubes and machines. The relief of dry mouth is best achieved with ice chips. Families who want to be involved in caregiving appreciate the opportunity to moisten lips and offer ice chips.
Hospice and palliative care physician experts Fainsinger and Bruera report that hydration sometimes improves the quality of life of a dying patient, especially in cases of opioid toxicity or dehydrationinduced confusion. Artificial hydration can be delivered by parenteral routes. Hypodermoclysis is the provision of fluids through a subcutaneous route (a small needle placed under the skin). Intravenous hydration provides fluids via the vascular system.
Constipation. Constipation, the abnormally infrequent evacuation of hard stool, occurs in 50 to 78 percent of adults (the average person has five to seven stools per week). Causes of constipation include side effects of medications, inactivity and weakness, intestinal obstruction from a tumorcompressed bowel, and fluid and electrolyte abnormalities such as dehydration, hypercalcemia, and hyperkalemia. In terminal patients constipation typically stems from multiple causes.
Nonpharmacological treatment may include altering food and fluid intake. Whenever possible, the patient should increase fluid intake and consumption of high-fiber foods. If the patient is close to death, pharmacological and/or mechanical treatments are preferable.
Medication-induced constipation can be treated with a stool softener/stimulant combination such as casanthranol with docusate (Pericolace) or senna (Senekot). A minimum goal is a bowel movement once every three days, regardless of intake. Constipation that is not secondary to a bowel obstruction calls for laxative therapy. About one-third of patients at the end of life require suppositories, enemas, and/or disimpaction to treat constipation despite the appropriate use of oral laxatives.
Constipation causes significant discomfort and embarrassment for patients. It can cause serious complications in the patient with advanced disease. Because it is such a common problem, prophylactic measures should be initiated in most patients. Prevention, aggressive assessment, and treatment are essential.
Nausea and vomiting. Nausea, with or without vomiting, occurs in 70 percent of terminally ill patients. Nausea is the unpleasant subjective sensation that results from stimulation of four major areas: the gastrointestinal lining, the chemoreceptor trigger zone in the fourth ventricle of the brain, the vestibular apparatus, and the cerebral cortex. Vomiting is a neuromuscular reflex that occurs as a result of a variety of mechanisms stimulating the vomiting center.
There are several causes of nausea, including gastrointestinal, such as gastric dysmotility, bowel obstruction, and constipation; treatment-induced, such as medications, chemotherapy, and radiation therapy; metabolic disturbances, such as hypercalcemia, uremia, and infection; and CNS causes, such as pain and increased intracranial pressure must be determined. Nonpharmacological treatments include guided imagery techniques, relaxation, music therapy, and hypnosis. Other nonpharmacological measures include decreasing food odors, serving meals at room temperature, and encouraging good oral hygiene.
Nurse researcher Cynthia King reported the use of nine classes of antiemetic drugs to treat nausea and vomiting in hospice/palliative-care patients. Medications are available to manage gastrointestinal causes, treatment-induced causes, metabolic disturbances, and central nervous system causes. For example, the prokinetic agents such as metoclopramide (Reglan) enhance gastric motility. Serotonin 5-HT3 receptor antagonists, such as ondansetron (Zofran), are used to block the neurotransmitter associated with treatment-induced causes. Phenothiazines and butyrophenones act primarily as dopamine antagonists and are most potent at the chemoreceptor trigger zone. Benzodiazepines work on the central nervous system, altering the perception of the nausea. Corticosteroids should be initiated in cases of increased intracranial pressure, hypercalcemia, or tumor-induced obstruction.
Patients may need more than one pharmacological agent to treat nausea and vomiting associated with multiple etiologies. For example, if the nausea is a result of tumor pressure on the gastrointestinal lining, pressure-reduction techniques are in order (e.g., coadministration of a corticosteroid to shrink the tumor burden along with a benzodiazepine to alter the perception of nausea).
Dyspnea. Dyspnea is a subjective symptom that involves a feeling of breathlessness or air hunger. The patient's perception of the degree of breathlessness is the only reliable indicator of the severity of the dyspnea, which occurred in 70 percent of terminal patients at time of admission to one study and 82 percent of patients one week before death. The causes of dyspnea vary; among them are anxiety, fear, airway obstruction, and infections such as pneumonia, thick pulmonary secretions, and fibrosis of lung tissue arising from radiation, chemotherapy, and fluid overload. Tyler recommends nonpharmacological interventions such as improving air circulation with fans, air cooling, repositioning, breathing exercises, and limiting strenuous activities.
Providing reassurance is essential in relieving the patient's distress. Anita Tarzian, nurse researcher, suggests that the fear of suffocation that accompanies dyspnea may be related to the concept that life begins with a breath and ends with the lack of breath. According to Tarzian, dyspnea symptoms may be the first time a patient and the caregivers acknowledge the reality of impending death. Her study of ten nurses who cared for air-hungry patients revealed that as patients experienced air hunger, the families panicked along with the patients. It is important, therefore, to provide patients and caregivers with clear explanations of the nature of the dyspnea and to reassure them that relief is possible.
Pharmacological management usually focuses on the cause of the dyspnea. Oxygen, although widely used as a treatment for dyspnea, is indicated only when there is underlying hypoxia. Antianxiety medications such as diazepam (Valium) or lorazepam (Ativan) are useful if the cause of dyspnea is restlessness. Kemp suggests the use of bronchodilators (albuterol or theophylline) or expectorants (guaifenesin) if dyspnea is related to bronchitis, emphysema, or a lung condition. Steroids (prednisone or dexamethasone) may be used in cancer patients to decrease tumor swelling, which can alleviate obstructive causes of dyspnea.
Morphine, the most widely used pharmacological agent in treating dyspnea, is effective in improving the quality of the breathing. Health care professionals should explain to patients why opioids are indicated because they may not be familiar with their use in the management of dyspnea.
Insomnia. The National Institutes of Health defines insomnia as the experience of inadequate or poor quality of sleep. It entails difficulty falling asleep, difficulty maintaining sleep, waking up too early, or experiencing a nonrefreshing sleep. In one study 61 percent of dying patients reported sleep disturbances on admission to the study, and 50 percent reported sleep disturbances one week before death.
There are numerous causes for insomnia. The most frequent cause among dying patients is nocturnal pain. Other causes include depression, decreases in daily activity or daily napping, and side effects of medications, especially steroids. Alcohol and caffeine may also contribute to insomnia because of their stimulant effects.
Nonpharmacological treatments include relaxation therapy, stimulus-control therapy to minimizing daytime napping, and moderate exercise. Encouraging a patient to verbalize concerns to a caregiver may decrease insomnia related to fear and anxiety.
Among pharmacological approaches, insomnia caused by nocturnal pain is best managed by treating pain effectively throughout a twenty-four-hour period with benzodiazepines such as lorazepam (Ativan). CNS stimulants taken in early daytime hours may decrease daytime naps, thus improving nighttime sleep.
Neuropsychiatric symptoms. Neuropsychiatric symptoms that occur at end of life are extremely disturbing to patients and families. Among the most common are anxiety, delirium, and depression.
According to physician and death expert Susan Block, these symptoms are distinct from the normal sadness, grief, and worry that accompany the terminal phase of life. When anxiety, delirium, and depression are identified and treated early in course of advancing disease, the patient's quality of life improves markedly.
Depression. Depression occurs in 25 to 77 percent of the terminally ill population. Feelings of hopelessness, helplessness, depression, and suicidal ideation are not normal at the end of life and should not be ignored. The most effective management of depression includes a combination of nonpharmacological and pharmacological approaches. Nonpharmacological management emphasizes supportive counseling and psychotherapy, including discussing short-term goals, identifying and reinforcing strengths, and employing successful coping techniques. All members of the interdisciplinary team need to be involved with the plan of care to address the physical, emotional, and spiritual issues associated with depression.
The choice of pharmacological management is guided by the expected life span of the patient. When time is limited and an immediate reversal of depression is desired, a rapid-acting psychostimulant, such as methylphenidate (Ritalin), is best. Selective serotonin reuptake inhibitors (SSRIs), such as paroxetine (Paxil) or sertaline (Zoloft), are highly effective but require two to four weeks to achieve a response. Therefore, the depressed, dying patient with less than three weeks to live should not be treated with an SSRI. Nor are tricyclic antidepressants, such as amitriptyline (Elavil), useful in such cases because of their delayed onset of therapeutic response and significant anticholinergic side effects such as constipation, dry mouth, and urinary retention.
Delirium. Delirium is "an etiologically nonspecific, global cerebral dysfunction characterized by concurrent disturbances of level of consciousness, attention, thinking, perception, memory, psychomotor behavior, emotion, and the sleep-wake cycle" (William Breitbart et al, 1998 p. 945). Often misdiagnosed as anxiety or depression, it occurs in up to 80 percent of dying patients. Early detection and treatment can lead to improved outcomes in the hospice/palliative-care setting.
There are multiple causes of delirium. Potentially reversible causes include metabolic abnormalities such as hypercalcemia, overwhelming systemic infection (sepsis), dehydration, or major organ failure. About 50 percent of patients have unknown etiologies and require empiric treatment. Nonpharmacological management is aimed at providing a comfortable environment. Measures to decrease anxiety and disorientation include encouraging the presence of family and familiar persons; a visible clock and calendar; a quiet, well-lit room; and the use of soothing music. Familiar sounds, smells, and textures offer comfort.
When a reversible cause for delirium is identified, pharmacological agents appropriate for the etiology should be initiated. Symptom management may be achieved through the use of butyrophenones such as haloperidol. Haloperidol, a blocking agent of the neurotransmitter dopamine, is usually effective in decreasing agitation, clearing sensorium, and improving cognition. However, there are circumstances, especially with terminal restlessness, when delirium can only be controlled with sedation. The use of pharmacological agents to sedate patients with terminal delirium requires serious consideration by the interdisciplinary team members, discussion with family about care goals, and careful monitoring. Sedation should only be considered after an exhaustive trial of evidencedbased pharmacological interventions.
It is important to distinguish delirium from episodes of awareness of imminent death. In the final days of life, patients may appear confused to caregivers and family, speaking of trips, wanting to "go home," talking of deceased family members, and reporting visions. Some health-care professionals believe that this confusion arises from physiological changes occurring during the dying process, while others consider it to be a spiritual experience. This imperfectly understood syndrome calls for sensitive exploration with the patient and family.
Anxiety. Patients often experience anxiety as their disease progresses and they face their final days. Anxiety may be evidenced by physical and/or cognitive symptoms such as shortness of breath, gastrointestinal distress, tachycardia, loss of appetite, irritability, and insomnia. A common cause of anxiety in the hospice/palliative care population is poorly controlled pain. Alleviating the pain often alleviates the anxiety, and no further treatment is necessary.
The most effective treatment is a combination of counseling therapy and pharmacological management. Goals of psychosocial intervention are to improve morale, self-esteem, and coping skills. Psychotherapy for patients at the end of life focuses on helping them deal with the anxiety of impending death. Fears and anxieties are best managed by the interdisciplinary team. All team members can address spiritual, practical, and emotional concerns.
In determining the need for pharmacological management of anxiety, the severity of the symptom is the most reliable factor. Patients with persistent apprehension and anxiety benefit from benzodiazepines, such as lorazepam (Ativan) and diazepam (Valium). Because many patients at the end of life are elderly, or have compromised renal and hepatic function, it is important to start with low doses of the benzodiazepines. Using lower doses also minimizes potential side effects.
Although symptoms in patients at the end of life increase in prevalence and severity with disease progression, they remain manageable with appropriate interventions. When patients' physical distress is well managed, it is possible for them to focus on their vision of a "good death." According to Lipman, end-of-life care that incorporates individualized, evidence-based medicine will lead to compassionate care. Health-care providers who are not familiar with end-of-life symptom management can consult the extensive literature, or they can access a local hospice/palliative care team for suggestions. The passage from life to death can be immeasurably eased by a team approach that focuses on giving the patient emotional reassurance and symptomatic relief in harmony with his or her care goals.
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POLLY MAZANEC JULIA BARTEL