The Journal for Nurse Practitioners
Volume 4, Issue 8 , Pages 610-615, September 2008

Management of Common Symptoms at End of Life in Acute Care Settings

  • Nantawadee P. Lee

      Affiliations

    • Nantawadee P. Lee, DNS, RN, ACNP-BC, CCRN, is acute care nurse practitioner in Slidell, LA.
    • ,
  • Gail Washington

      Affiliations

    • Gail Washington, DNS, RN, is assistant professor at California State University in Los Angeles.

Article Outline

Abstract 

Symptom management at end of life is one of the many methods aimed at improving the quality of dying. Knowledge of symptoms and their management will help clinicians provide the best possible care to patients and their families. The purpose of this article is to discuss common symptoms, frequency of symptoms, appropriate assessment, and interventions. This article focuses on pain, constipation, dyspnea, fatigue, depression, and delirium.

Keywords:  Constipation , delirium , depression , dyspnea , fatigue , end of life , pain , symptom management

 

When it is determined that a disease process can no longer be controlled and death is imminent, the focus shifts from cure to comfort. As addressed by the End-of-Life Nursing Education Consortium (ELNEC) curriculum,1 several issues are critically important at this stage. Examples of these issues include symptom management, ethical/legal, cultural considerations, communication, grief/loss/bereavement, achieving quality care, and preparation and care for the time of death. Management of common symptoms at the end of life is aimed at improving the quality of dying. Because as many as 67% of patients die in hospitals or long-term care facilities,2 it is essential that all clinicians are knowledgeable and able to provide information as well as options to patients, families, and/or significant others. The purpose of this paper is to discuss common symptoms, frequency of symptoms, appropriate assessment, and interventions. This paper will focus on pain, constipation, dyspnea, fatigue, depression, and delirium.

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Pain 

Despite advances in medical and nursing care, pain continues to be the most common and most feared symptom at the end of life.3, 4 Pain is experienced in patients with and without malignant diseases.4, 5, 6 In the “Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments” (SUPPORT),7 hospitalized patients with diverse medical conditions had an estimated survival of 6 months or less. Of those patients, 22% reported moderate to severe pain, and caregivers of these patients reported that 50% of the patients had similar levels of pain during the last few days of life. Also, in a study of 38 ICU descendents, less than half of the 94 family members reported that pain was under control most or all of the time prior to death.8 Assessment of pain in dying patients is similar to that of other patients. For example, assessment should be comprehensive and include the following information: location, onset and duration, quality, intensity, alleviating/aggravating factors, effects of pain, manner of expressing pain, and personal meaning of pain.9 Several multidimensional and unidimensional pain assessment scales are available to assist with this assessment. Multidimensional scales include the Initial Pain Assessment,10 the Brief Pain Inventory,11 the University of Alabama in Birmingham (UAB) Pain Behavior Scale,12 the West Haven Yale Multidimensional Pain Inventory Scale (WHYMPI),13 and the Short-Form McGill Questionnaire.14 The Wong Baker FACES rating scale15 is a commonly used unidimensional scale for measuring pain intensity in children and persons who do not speak English. A simple numeric rating scale or descriptor pain scale (no, mild, moderate, and severe) may also be used to rate pain intensity.

Because of the difference in therapeutic approaches based on the type of pain, it is also essential that clinicians differentiate between acute/chronic, somatic/visceral, and neuropathic pain.6 Acute pain is generally short-term, self-limiting, and usually dissipates after an injury heals. Underlying diseases and routine therapeutic interventions (such as venipuncture, suctioning, and turning) can cause acute pain in end-of-life patients. Chronic pain, on the other hand, persists beyond the time of healing and may be associated with a pathological process. Chronic pain can continue for 6 months or longer. Characteristically, somatic pain originates in subcutaneous tissues, joints, tendon, muscles, or fascia and is often described as dull, aching, or diffuse pain. Autonomic nervous system responses to somatic pain may include nausea, vomiting, and cold/clammy skin. Visceral pain originates in organs as a result of compression, distention, or stretching of viscera in the thoracic and abdominal cavity. Visceral pain is difficult to localize and often described as pressure, deep, and squeezing. Examples of visceral pain include pancreatitis, bowel infarction, and capsular swelling of the liver. Neuropathic pain is caused by injury to the central or peripheral nervous system and is described as burning, stabbing, shock-like, electrical, and pin and needles.10 Compression or traction of nerve structures, spinal stenosis, diabetic, and HIV-related peripheral neuropathy are among a few potential sources of neuropathic pain in end-of-life patients. Psychosocial factors such as anxiety, existential distress, and fear of pain can increase a patient's sense of physical pain and should be addressed with pharmacologic and nonpharmacologic modalities.16

Medication is the cornerstone of pain management in terminally ill patients.17 During mild or moderate pain, acetaminophen, aspirin, or other nonsteroidal anti-inflamatory drugs (NSAIDs) may be sufficient. Moderate or severe pain may require analgesics combined with opioids. Severe pain, however, will require full opioid agonists. Unlike other types of pain, neuropathic pain may respond more favorably to tricyclic antidepressants (such as amitriptyline, nortriptyline, and desipramine); anticonvulsants (such as gabapentine and carbamazepine); tramadol; and the lidocaine patch. Similarly, corticosteroids may be useful for patients with headache due to increased intracranial pressure, pain from spinal cord compression, metastatic bone pain, and some neuropathic pain caused by invasion or infiltration of nerves of the tumor. To avoid or lessen side effects, low dosages of multiple medications rather than larger doses of one or two medications may be more useful. Radiation therapy, neurolysis, rhizotomy, ablative surgery, or chemotherapy may become necessary to control pain in some terminally ill patients.6 Unless limited by potential side effects or patient condition (ie, delirium), adjuvant and nonpharmacologic therapies should be considered. Examples of these therapies include message, application of heat or cold, exercise, positioning, relaxation techniques, guided imagery, music/art therapy, meditation, biofeedback, and social interaction.

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Constipation 

Constipation is reported in as many as 90% of dying patients.17 Inactivity, dehydration, poor diet, and the use of medications (ie, opioids, antidepressants) contribute to constipation. Untreated constipation is associated with pain, vomiting, impaction, and even death from colon perforation. Assessment of constipation should include establishing the patient's previous bowel habits. Thorough abdominal (including inspection, auscultation, percussion, palpation) and rectal exams should be performed to exclude impaction or rule out acute abdomen.17 A rectal exam should be performed if no stool has passed in 3 to 4 days.18 An abdominal radiograph is also recommended if constipation persists with an empty rectal vault on examination or with any signs or symptoms of abdominal distention.18 Because opioids are commonly used for the management of pain and dyspnea, vigilance in monitoring constipation in these patients is essential.

Prophylactic and therapeutic uses of laxatives are the primary treatment of constipation. A bowel regimen should be instituted with the initiation of any level of opioid therapy.18 The selection of laxatives and routes of administration is determined by the patient's previous experiences with such agents, existing condition, and the laxative's mode of action.19 Except for bulk-forming laxatives, all types of laxatives and softening agents can be used in terminally ill patients. Because of inadequate fluid intake in these patients, bulk-forming laxatives such as methylcellulose or psyllium are not effective and may result in a gelatinous mass that may potentially obstruct the bowel. For patients with fecal impaction, manual disimpaction or enemas should precede the use of oral laxatives. Octreotide may be used in patients with impending bowel obstruction or gastric stasis.20 The use of laxatives is contraindicated in patients with complete bowel obstruction.19

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Dyspnea 

Dyspnea, a subjective experience of difficulty breathing, may be described as shortness of breath, trouble catching one's breath, tightness in the breath, heavy breathing, choking, air hunger, or suffocation.6, 18, 21 As many as 75% of dying patients have reported dyspnea.17 Results of a small study on the quality of dying in 38 intensive care units (n = 94) demonstrated that only 3% of the patients reported breathing comfortably most of the time.8

The etiology of dyspnea may include bronchospasm, tracheal obstruction, neuromuscular diseases, restriction of movement of the chest or abdominal wall, pneumonia, pleural effusions, pulmonary emboli, congestive heart failure, superior vena cava syndrome, severe anemia, or lung tumor encroachment on the airway. Because of the subjective nature of the experience, dyspnea does not correlate well with common objective physiologic measures such as respiratory rate, SPO2, PaO2, or PCO2.17 Numerical, verbal analogue, or visual analogue scales should be used to assess and quantify the presence and intensity of dyspnea.21 Examples of these tools include the Support Team Assessment Schedule22 and the Edmonton Symptom Assessment System.23 Physical examination should include assessment of respiratory rate, depth, use of accessory muscles, and adventitious breath sounds. The effect of dyspnea on functional health status and quality of life such as talking, eating, sleeping, and ambulating should also be assessed. Pulse oximetry, blood gas, EKG, chest film, and other diagnostic tests are unnecessary and therefore not indicated if the patient is clearly dying and the goal of care is comfort.24

When possible, treatment is directed at the underlying cause of the dyspnea. However, the clinician must evaluate the risk-benefit ratio of diagnostic and therapeutic interventions for each patient. Symptomatic or palliative management is recommended when side effects of treatment directed at the cause are more bothersome than the dyspnea itself. Symptomatic management such as drugs, oxygen therapy, and general measures of psychological and spiritual support and counseling should be provided as needed.

Opioids are the first-line therapy for managing dyspnea.25 Although the exact mode of the action of opioids in dyspnea management is unknown, it is postulated that central and peripheral mechanisms are involved. These mechanisms may include (a) depression of opioid receptors in the lungs, spinal cord, and central respiratory centers, (b) diminishing of the ventilatory responses to hypoxia and hypercapnea, (c) decreased sensation of dyspnea, and (d) reduced preload to the heart as a result of vasodilatation of pulmonary vessels.21 Opioids have several potential advantages and multiple routes of administration, which include oral, subcutaneous, intravenous, rectal, and nebulized. A meta-analysis of 9 small studies (n =177), however, revealed that nebulized opioids are not effective to relieve dyspnea.26 The most commonly used opioids are codeine (with or without acetaminophen), hydrocodone, morphine, oxycodone, and hydromorphone. Although the routine use of benzodiazepines is not indicated in patients with dyspnea, they may be useful when anxiety is a predominant cause. Frequently used benzodiazepines are lorazepam, diazepam, clonazepam, and midzolam. Other drug therapies may include bronchodilators, diuretics, steroids, antibiotics, antifungals, and anticoagulants.27 Oxygen is helpful but not always necessary, especially in those without hypoxia.25 When used, nasal cannula administration is generally more preferred and better tolerated than a mask. This is especially true in a setting of imminent death when patients become more agitated by the mask. In patients without hypoxia, oxygen may be used for symptom relief.18 Airflow stimulation of receptors in the face and nasal passages may decrease a sense of breathlessness and air hunger. Airflow from directed electrical fans and open windows that blow in the face may have the same effect as supplemental oxygen and can be helpful with some patients. Also, assisting patients to sit forward while supporting their arms, purse lip breathing, relaxation techniques, and reassurance from staff or family members can be helpful.

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Fatigue 

Fatigue is one of the common symptoms of terminally ill patients, affecting between 70% to 100% of patients.19 Common causes of fatigue include anemia, cardiac disease, decreased activity level, deconditioning, emotional distress, hepatic disease, poor nutrition, pain, pulmonary disease, renal disease, thyroid disease, sleep disturbance, or other medical causes. In clinical settings, it is recommended that clinicians assess fatigue by simply asking, “How much of the day does the patient spend in bed?”17 The authors also advocate the use of an ordinal scale rating of 0 to 4. Because most patients in hospitals usually spend the majority of their time in bed, this question may not be sensitive enough to determine the level of fatigue in acute care settings. Another rating scale, 0 to 10, is also advocated by Dahlin et al.19 However, the exact wording to elicit these numerical values was not discussed.

Symptom management of fatigue should consist of discontinuing medications that worsen fatigue, such as cardiac medications or even opioids (if pain and/or dyspnea are well controlled). If possible, hydration without worsening edema or institution of mild exercise regimens may aid in decreasing fatigue.17 Energy conservation, regular nighttime sleep habits, and limited daytime napping are also recommended.19 Data on the benefit of hypnotics in reducing day time fatigue in terminally ill patients are not available. Emotional or spiritual counseling may be effective in the management of fatigue.

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Depression 

Contrary to general belief, persistent sadness and anxiety at the end-of-life are abnormal and suggestive of major depression. While as many as 75% of end-of-life patients experience depressive symptoms, less than 26% of patients have major depression17, 28 Depression is not a necessary part of terminal illness and constitutes suffering.17, 18 Previous history of depression, family history of depression, and prior suicide attempts are associated with increased risk of depression among terminally ill patients. Pain, uncontrolled pain, and fatigue can also exacerbate depression. Glucocorticoids and some anticancer agents (such as tamoxifen, interleukin 2, interferon, and vincristine) are also associated with depression. Hypothyroidism, Cushing syndrome, electrolyte imbalance, and side effects of medications can mimic depression and should be excluded. To screen for depression, it was suggested that the clinician ask “How often do you feel downhearted and blue?” or “Do you feel depressed most of the time?17

As previously discussed, pain should be adequately treated. Behavioral therapies such as life review and reminiscence may be helpful. Referral to other multidisciplinary members such as social workers, psychologists, psychiatrists, or clergy may be warranted.16 Pharmacologic interventions, however, remain the core of therapy at the end-of-life. Psychostimulants are fast acting and may be preferred for patients with poor diagnosis or for those with fatigue or opioid-induced somnolence. Examples of psychostimulants are dextroamphetamine, methylphenidate, and pemoline. Psychostimulants may be combined with traditional antidepressants and may be tapered off when the antidepressant is effective. Side effects of psychostimulants include anxiety, insomnia and, rarely, paranoia. If a patient has a prognosis of several months or longer, selective serotonin reuptake inhibitors (fluoxetine, sertraline, and citalopram) and serotonin-nonadrenaline reuptake inhibitors (venlafaxine) are the preferred treatment. With the assistance of a specialty consultant, atypical antidepressants may be used. Alprazolam can be effective in patients suffering from both anxiety and depression.17

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Delirium 

Approximately 25% to 90% of patients experience delirium at the end of life.17, 21, 29 Causes of delirium include (a) metabolic encephalopathy arising from liver failure, hypoxemia, or sepsis; (b) dehydration; (c) electrolyte imbalances such as hyponatremia, hypernatremia, hypercalemia; (d) infections such as meningitis, encephalitis, urinary tract infection, aspiration or community acquired pneumonia; (e) nutritional deficiencies such as vitamin B12 deficiency; (f) paraneoplastic syndromes; and (g) primary brain tumors or brain metastases. Other common causes of delirium at the end of life are side effects associated with treatment, such as radiation of brain metastasis and medications (opioids, glucocorticoids, anticholinergic drugs, antihistamines, antiemetics, and chemotherapeutic agents). In some patients, the causes of delirium are multifactorial.17

The patient's baseline mental status prior to the onset of symptoms is important for making a diagnosis of delirium. Indicators of delirium include new onset (hours to days) of disorientation, impaired cognition, somnolence, fluctuating levels of consciousness, or delusion with and without agitation. For successful management, delirium should be distinguished from acute anxiety, depression, and dementia.17 Several screening and assessment instruments are available and may be helpful with this process. Instruments such as the Mini-Mental Status Examination (MMSE), Cognitive Capacity Screening Examination (CCSE), Short Portable Mental Status Questionnaire (SPMSQ), Memorial Delirium-Assessment Scale (MDAS), Confusion Assessment Method (CAM),21 and the Delirium Rating Scale30 may be considered for use. To determine the possible cause of delirium, the patient's list of medications must be carefully evaluated. Extensive diagnostic evaluations are not appropriate. Reversible causes are found in fewer than half of the terminally ill patients.17

Because delirium can be very distressing and may interfere with the bereavement process, it should be treated aggressively.17 The family should be informed that delirium is common at the end of life. Unnecessary medications should be avoided. If possible, reversible causes should be treated. Environmental modification may be helpful in maintaining a familiar setting and avoiding new experiences. Clocks, calendars, and message boards are often useful in orienting patients. As reality orientation may increase anxiety and agitation, the patient's hallucinations or cognitive mistakes should be gently corrected.

Nonpharmacologic techniques alone are frequently inadequate to control distressing symptoms of delirium.29 Neuroleptics are the cornerstone of pharmacologic treatment.6, 17, 19 Haldoperidol is the first line of therapy. Haldoperidol, 1 to 10 mg orally, subcutaneously, intramuscularly, or intravenously, may be given twice or three times daily. Chlorpromazine, 10 to 25 mg, may be given if sedation is desired. Dystonic reaction is a common extrapyramidal side effect resulting from dopamine blockade and may be associated with the use of neuroleptics. This side effect, however, is reported to be rare in the treatment of terminal delirium.17 Atypical neuroleptics such as risperidone or olanzapine are helpful for patients with longer anticipated life spans. These agents are less likely to cause extrapyramidal adverse effects. Neuroleptics may be combined with lorazepam to reduce agitation when delirium is the result of alcohol or sedative withdrawal. If necessary, propafol or continuous midzolam may be used. In patients receiving opioids for pain control, they should continue their use throughout the treatment process.17 Physical restraints should only be used as a last resort if the patient becomes a threat to self or others.

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Conclusion 

Pain, constipation, dyspnea, fatigue, depression, and delirium are a few of the common symptoms experienced at the end of life. Both nonphramacologic and pharmacologic therapies have been shown to be effective in the management of these symptoms. Careful assessment, proper intervention, and evaluation can alleviate undue suffering and improve quality of dying. Some patients may, however, continue to experience intolerable unrelieved pain and intractable symptoms despite optimal treatment. In selected patients, palliative sedation is a therapeutic option that affords a more comfortable and dignified death.31 Because of the limited scope of this paper, nurse practitioners interested in holisitc approaches to care at the end of life are urged to seek other resources such as Hospice and Palliative Organizations or ELNEC training.

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 In compliance with national ethical guidelines, the authors report no relationships with business or industry that would pose a conflict of interest.

PII: S1555-4155(08)00305-X

doi:10.1016/j.nurpra.2008.05.007

The Journal for Nurse Practitioners
Volume 4, Issue 8 , Pages 610-615, September 2008

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