The dying process is a complex physiologic response to end-stage illness. It is characterized by symptoms that require intensive interventions to ensure comfort for the patient and a sense of well-being for the caregiver. Death can happen suddenly, but in malignant conditions, the dying process often begins several months before death occurs. Symptoms such as decreased activity, anorexia, pain, drowsiness, anxiety, depression, shortness of breath, constipation, and weakness may occur simultaneously (Potter et al., 2003; Bruera & Neumann, 1999). As death nears, signs and symptoms include fever, purple-blue discoloration and coolness of the distal extremities, anorexia, dysphagia, constipation, mental status changes, irregular breathing patterns, congestion, cough, inability to clear secretions, a decrease in urine output, and incontinence.
Fever is a result of a rise in the body’s set-point temperature, which is regulated by the preoptic region of the anterior hypothalamus. The set point can be raised by a number of factors, including the release of pyrogens produced by infectious agents or the immune system, tumor infiltration of the thermoregulatory area of the brain, obstructive tumors of the gastrointestinal (GI) or genitourinary (GU) tract, adrenal carcinomas, necrotic tumors, leukemia, multiple myeloma, Ewing’s sarcoma, lymphoma, and inflammatory processes. Antipyretics (e.g., acetaminophen) can bring down the set point to a lower or normal body temperature (Rhiner & Slatkin, 2001).
Cardiac output decreases, causing mottling and coolness of the extremities, tachycardia, and hypotension. Renal failure occurs when the diminishing cardiac output reduces the circulation through the kidneys, resulting in decreased urine output (Matzo, 2001).
Changes in the GI system begin with changes in taste and a loss of appetite. Liver involvement, ascites, and tumor obstruction cause nausea and vomiting. Immobility, a decreased intake of fiber and fluids, decreased colonic peristalsis, and tumor compression result in constipation or obstruction.
Neurologic changes range from mild confusion to delirium or severe agitation. Underlying causes include the accumulation of toxins from renal or liver failure, hepatic encephalopathy, acidosis, metabolic and electrolyte imbalances, medication effects, hypoxia, sleep deprivation, sepsis, and even bowel obstruction. Patients may acknowledge people or spirits in the room that are apparent to no one else, or they may talk to or about those who have already died. This is a phenomenon of nearing death awareness that many nurses have observed and documented, and it is not necessarily confusion or delirium. The level of consciousness may decline to an unresponsive state.
Pulmonary changes include inability to clear secretions from the throat, periods of apnea that become longer and, in the final stages, breathing with mandibular movement during the last few hours. These changes arise from decreased blood perfusion to the brainstem, which slows the impulses from the respiratory centers in the brain (Brasher, 2002).
Decreased urine output may occur as a result of dehydration or renal failure. Incontinence may occur as sphincter control is lost or because the patient is unable to communicate personal needs.
EPIDEMIOLOGY AND ETIOLOGY
In 2005 there were 578,280 cancer deaths in the United States (American Cancer Society, 2005). A recent study found that the mortality rate among patients with cancer admitted to the ICU is 45.7% (Thiery et al., 2005), and the mortality rate for patients with cancer who are mechanically ventilated is 60% to 70% (Azoulay et al., 2001). Patients who undergo bone marrow transplantation and who require mechanical ventilation in an ICU have an 80% mortality rate (Bach et al., 2001). Initiation of the do not resuscitate (DNR) order served as a decision point in limiting treatment, such as withholding or withdrawing life-supporting interventions; this resulted in the death or discharge of 98% of ICU patients with cancer (Smedira et al., 1990).
RISK PROFILE
Death in the ICU
Lack of or disregard for an advance directive. The SUPPORT (1995) study involved 960 people who had requested no resuscitation. The study found that the DNR order was implemented for only half of these patients, and one third of the patients died while hospitalized.
Allogeneic bone marrow transplantation (BMT) with relapsed or recurrent cancer and poor performance status as a result of the cancer or the cancer treatment side effects (Groeger et al., 1998) and readmission soon after BMT (Karamlou et al., 2003).
Lack of clarification of end-of-life goals (Field & Cassell, 1997).
Poor functional status, high tumor burden, and presence of co-morbidities (Karamlou et al., 2003).
Patients with disseminated intravascular coagulation and those requiring vasopressors are more likely to die. Prolonged mechanical ventilation and ventilation for longer than 24 hours after admission increases the risk of death (Groeger et al., 1999). Mechanical ventilation with multiorgan failure also is a poor prognostic indicator (Bach et al., 2001).
PROGNOSIS
The prognosis for patients with advanced cancer is based on syndrome manifestations, especially physical dependence, anorexia-cachexia, and lymphopenia (Glare & Christakis, 2004). Clinical variables predictive of survival include performance status, anorexia, cognitive failure, dyspnea, dry mouth, weight loss, and dysphagia (Vigano et al., 2000). Prognostication by the physician or nurse practitioner is helpful in providing the patient and family with information so that they can set goals and priorities, as well as develop coping mechanisms for dealing with loss and grief. Prognostic guidelines may provide the impetus for decision making; may open up communication among the patient, the family, and health care providers; and may establish the need for referrals to end of life resources (Glare & Christakis, 2004). Cultural, sociologic, religious, and spiritual variables affect the patient’s and family’s willingness to discuss the prognosis, as well as the nurse’s comfort level in predicting death. These factors influence the type of information patients and families are willing to accept or believe, and also what the nurse is willing to discuss with them.
PROFESSIONAL ASSESSMENT CRITERIA (PAC)
1. Comprehensive nursing assessment includes evaluating the physical, psychological, spiritual, emotional, and social elements of the patient and family.
2. The patient’s and family’s goals of care must be determined.
3. Diagnostic testing is obtained if the information is needed to help with symptom management or the prognosis.
NURSING CARE AND TREATMENT
1. Provide guidance and counseling in the decision-making process. The legal basis for decision making includes knowledge of the provisions of the Patient Self-Determination Act (PSDA), which went into effect in December, 1991. This federal law requires all facilities that receive either Medicare or Medicaid funding to inform the patient that the person has the right to accept or refuse any treatment or medical care. Also, the facility is required to recognize advance directives. A health care proxy (power of attorney for health care) may be appointed to substitute judgment in the event the patient is unable to express his or her wishes about health care decisions or if the patient lacks decision-making capacity. Naming a power of attorney for health care decisions allows for decision making under changing circumstances. A living will is a form of advance directive that states the patient’s wishes; it is a legal document, but it does not appoint a power of attorney for health care. Most living wills are requests that curatively oriented treatments not be initiated or, if initiated, are stopped once the person is considered to have a terminal condition or to be in a persistent vegetative state (Project Grace, 2006; AHRQ, 2001). Living wills may also call for measures to prolong life. The accepted format for advance-directive documents varies from state to state. If a health care proxy has not been appointed, some states give the next of kin the authority to make decisions. The PSDA is legally grounded in the right to privacy and the right of a competent person to make decisions about treatments. The concept of autonomy is the underpinning of this law, which reflects the dominant value system of the United States. However, autonomy may not be as valued in other cultures (Douglas, 2001). Advanced practice oncology nurses follow the ethical code as interpreted by the American Nurses Association (2001), which regards autonomy as an important element of patient care.
2. Provide aggressive pain management (seeChapter 36.)
3. Manage nausea and vomiting. These symptoms may be caused by medications, abdominal or brain tumors, anxiety, gastritis, bowel obstruction, constipation, hypercalcemia, hypokalemia, hypernatremia or hyponatremia, dehydration, uremia, or infection. Treat the underlying cause if known; for example, stop using irritating medications or switch to a less irritating form. Use dexamethasone for increased intracranial pressure caused by brain tumors, benzodiazepines for anxiety, and H2 blockers for gastritis. If the etiology is not known, prochlorperazine can be started at a dosage of 25 mg given rectally every 12 hours. Nonpharmacologic interventions include eliminating offending foods and odors and alterations in the diet until symptoms resolve (Murphy-Ende, 2006a).
4. Manage dysphagia. Difficulty swallowing may be caused by candidiasis, infection, compression of the esophagus by tumor, esophageal erosion, brain metastasis, or proximal muscle weakness. Candidiasis infections should be treated with antifungal medications (e.g., nystatin). Radiation treatment may be used to shrink tumors, and steroids may be given to reduce swelling. Soft foods or liquids may be more tolerable; however, if the patient is not hungry, forcing the issue of eating may cause distress. Tube feeding may or may not be indicated, depending on the individual patient’s prognosis and goals of care.
5. Manage xerostomia. Thirst is the conscious desire for water, which may be accompanied by dry lips, dry mouth, and polydipsia. However, thirst is not a reflection of fluid status (Murphy-Ende, 2006b). Anticholinergic drugs, the effects of radiation, and oral tumors may create a dry mouth. Treatment should be directed at the underlying cause of thirst; however, if thirst is due to side effects of pain medications, the medications need to be continued. Liquids can be given as ice chips, through the end of a straw, or with an eye dropper or a small syringe. Oral care with a moist swab should be provided frequently, and family members can be taught to perform this task. If oral candidiasis is present, treatment with nystatin oral solution (as either a swish-and-swallow or a troche) may provide relief. Hard candy or gum (preferably sugar free) can be helpful. Pilocarpine may be used when the salivary glands are no longer functioning, as in the case of radiation damage (Murphy-Ende, 2006c).
6. Anticipate and manage constipation. Constipation is a predictable side effect of opioids, dehydration, and immobility, and it must be managed aggressively. When opioids are started, a stimulant (e.g., senna) should be started along with a stool softener (e.g., docusate sodium). The dose of senna and bisacodyl is titrated to produce a comfortable bowel movement at least every 3 days. Milk of Magnesia (30 mL) may be added if no bowel movement occurs within 72 hours. A bisacodyl suppository may be administered daily as needed. Enemas may also be helpful but can be uncomfortable for the patient. If the patient is impacted, use an oil-retention enema and allow it to be absorbed before disimpaction.
7. Manage diarrhea. Diarrhea may lead to dehydration and electrolyte imbalance and may compromise the integrity of the skin, causing pain, excoriation, and fungal growth. Before administering an antidiarrheal agent, rule out impaction and infectious diarrhea. For noninfectious diarrhea, administer loperamide (Imodium) 2 mg tab (liquid, 1 mg/5 mL) by mouth. The dose is 4 mg after the initial acute episode of diarrhea, then 2 mg after each unformed stool, up to a maximum of 16 mg/day. If loperamide is ineffective, start diphenoxylate hydrochloride with atropine sulfate (Lomotil); the initial dose is 15-20 mg/day by mouth in three or four divided doses, then 5-15 mg/day in two or three divided doses (Hodgson & Kizior, 2007). Skin care includes washing after each episode, followed by application of a petroleum-based, zinc oxide–based, or dimethicone-based ointment.
8. Manage dyspnea. Dyspnea is the uncomfortable awareness of breathlessness, which can be minimized with pharmacologic and nonpharmacologic interventions. Treating the underlying etiology, when possible, is the first line of treatment. Oxygen, blood transfusions, radiation or chemotherapy, and thoracentesis may be indicated if these interventions will treat the underlying problem rapidly enough. Nonpharmacologic treatments include breathing techniques used for COPD, fans, an open door or window, cool room temperature, and positioning the patient upright, with frequent repositioning as tolerated. Explain the etiology and reassure the patient that treatment to alleviate breathlessness is a priority. Medications to consider include morphine sulfate, bronchodilators, corticosteroids, anxiolytics, diuretics, and anticholinergics. Fluid overload or edema may contribute to dyspnea and must be monitored and treated. Airway congestion, referred to as the “death rattle,” is emotionally disturbing for the family. The congestion may be loud, requiring support and education of the family to emphasize that the patient is not “drowning.” Atropine drops, tabs, or patches may be used to dry secretions and minimize audible breathing, and gentle oral suctioning (not deep suctioning) can be done to remove excess secretions (Dudgeon, 2001). (See Chapter 12).
9. Manage cough. The cough may be dry or productive, and the patient may or may not be able to expectorate the sputum. Patients nearing the end of life may have difficulty clearing the airway because of weakness. Identifying and treating the cause of the cough, when possible, is helpful. For infections, antibiotics should be considered. Antitussives (e.g., codeine and other opioids) help suppress the cough. Expectorants help bring up secretions. Anticholinergics (e.g., atropine) are used to dry secretions. Diuretics are used if heart failure is contributing to the symptoms of cough. Nonpharmacologic approaches include humidifying air/oxygen, suctioning, repositioning, limiting talking, and using a word board if talking initiates coughing spells.
10. Manage pruritus and rash. These conditions can have either an endogenous or an exogenous etiology. Endogenous causes (e.g., malignancy, endocrine abnormalities, dermatitis, infection, renal failure, and hepatic dysfunction) should be identified and treated if possible. Medication-induced pruritus should be assessed and the medications discontinued. In patients with advanced cancer, opioids may be a causative factor, therefore opioids should be rotated or an antihistamine (e.g., diphenhydramine) should be added. Steroids can be used orally, parenterally, or topically to manage pruritus (Rhiner & Slatkin, 2001). Dry skin can be treated with mild soap and lotions that contain oil or aloe. Cool compresses over the affected sites may offer temporary relief. Rashes should be noted, documented, diagnosed, and treated. Treatment of rash and pruritus is directed at providing symptomatic relief and eliminating causative factors. Follow-up evaluation is necessary to evaluate the effectiveness of treatment and continued symptom management (Murphy-Ende, 2006d).
11. Manage fever. Consistency in either treating or not treating fever is important so that the patient’s set-point temperature is not rising and falling, causing chills and shaking. Acetaminophen can be used either orally or rectally. NSAIDs can also be used either solely or alternately with the acetaminophen. Nonpharmacologic measures include using a cool cloth or tepid bath and light clothing or covers. It is important for families to understand that the elevated temperature may be a natural part of the dying process and that it is not necessarily caused by an infection.
12. Manage delirium. Delirium is an acute confusional state. The etiology may be brain involvement, paraneoplastic syndrome, encephalopathy (metabolic, anoxic, or septic), electrolyte imbalance, or toxic metabolites of drugs. When the etiology of acute delirium can be determined, the underlying cause is treated. Delirium of unknown cause can be treated with haloperidol. Diphenhydramine can be used to prevent extrapyramidal reactions to haloperidol and to provide sedation. Treatment focuses on symptom control, family teaching, and support (NCCN, 2005). (For detailed information on delirium, see Chapter 7.)
13. Manage agitation. Agitation can lead to injury of the patient or health care worker. Therefore a quiet environment must be created, and the patient must be positioned within full view of the staff. All invasive lines, catheters, and devices should be triaged and removed if possible to prevent harm to the patient if self-removal is an issue. Dying patients should not be restrained; no lines or medical devices are important enough at this stage to warrant protection by restraining the patient. Medications can be helpful (e.g., haloperidol 5-10 mg given PO, SQ, IV, or IM and repeated after 30 minutes). A benzodiazepine (e.g., Ativan 1-2 mg) can be given for added effect. A sitter should be requested to protect the patient from self-harm (Wrede-Seaman, 1999). (For detailed information, see Chapter 7.)
14. Manage confusion. Confusion is common in the elderly, especially in a setting other than their usual environment. Other causes include drugs, impaction, a full bladder, pain, brain metastasis, cerebrovascular accident, metabolic imbalances, hypoglycemia, infection, withdrawal from alcohol or benzodiazepines, fear, and anxiety. Treat the underlying cause when possible. Reorient the patient and provide a calm, quiet environment that is well-lit during the day. Maintain continuity of caregivers and routine (see Chapter 7).
15. Manage anxiety and depression. Determine whether the patient has a past history of anxiety or depression, and if so, how it was treated. Other issues that may contribute to signs and symptoms of anxiety and depression include fear of dying, hypoxia, dyspnea, and psychological distress, which is closely related to spiritual distress and depression. Managing symptoms such as dyspnea can reduce anxiety. (For detailed information, see Chapter 8.)
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