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Co-Director, University of Massachusetts Medical School

In such a model of health or medical care, alleviating suffering is not as valued as curing disease, and patients who cannot be cured feel distanced from the health care team, concluding that when treatment has failed, they too have failed. Patients and families who have internalized the socially constructed meaning of care as second best may fear that any shift from curative goals in the direction of comfort-focused care will result in no care or poorer-quality care, and that the clinicians on whom they have come to rely will abandon them if they withdraw from the battle for cure. The reduction of patients to their diseases is exemplified in the frequently relayed message in late-stage illness that "nothing more can be done. In a care-focused perspective, mind, body, and spirit are inextricable, and treating the body without attending to the other components is considered inadequate to evoke true healing (Upledger, 1989; Wendler, 1996). This expanded notion of healing as care, along with and beyond cure, implies that healing can take place throughout life and outside the boundaries of contemporary medicine. In this expanded definition, healing is transcendent and its boundaries are unlimited, even as body systems begin to fail at the end of life (Byock, 1997). She was openly critical of what she called "a new but depersonalized science in the service of prolonging life rather than diminishing human suffering" (KьblerRoss, 1969, p. Her work revealed that, given adequate time and some help in working through the process, patients could reach a stage of acceptance where they were neither angry nor depressed about their fate (Kьbler-Ross, 1969). In an early study of care of the dying in hospital settings, sociologists Glaser and Strauss (1965) discovered that health care professionals in hospital settings avoided direct communication about dying in hope that the patient would discover it on his or her own. Closed awareness: the patient is unaware of his or her terminal state while others are aware. Suspected awareness: the patient suspects what others know and attempts to find out. Mutual pretense awareness: the patient, the family, and the health care professionals are aware that the patient is dying but all pretend otherwise. Open awareness: All are aware that the patient is dying and are able to openly acknowledge that reality. Glaser and Strauss (1965) also identified a pattern of clinician behavior in which those who feared or were uncomfortable discussing death developed and substituted "personal mythologies" for appraisals of what level of disclosure patients actually wanted. For example, clinicians avoided direct communication with patients about the seriousness of their illness based on their beliefs that (1) patients already knew the truth or would ask if they wanted to know, or (2) patients would subsequently lose all hope, give up, or be psychologically harmed by disclosure. Despite progress on many health care fronts, those who work with dying patients have identified the persistence of a "conspiracy of silence" about dying (Stanley, 2000, p. KьblerRoss illuminated the concerns of the seriously ill and dying in her seminal work On Death and Dying, published in 1969. At that time, it was common for patients to be kept uninformed about life-threatening diagnoses, particularly cancer, and for physicians and nurses to avoid open discussion of death and dying with their patients (Krisman-Scott, 2000; Seale, 1991). Kьbler-Ross (1969) was one of the first to examine patient denial and expose it as a useful coping mechanism that enables patients to gain temporary emotional distance from something that is too painful to contemplate fully. Patients who are characterized as being in denial may be using that strategy to preserve important interpersonal relationships, to protect others from the emotional effects of their illness, or to protect themselves because of fears of abandonment. Connor (1992) studied a small group of terminally ill cancer patients who were characterized by their use of denial as a coping mechanism. Participants in the experimental group were questioned in structured interviews about their perceptions of the most difficult aspects of having cancer and those actions that they or others take that make these difficulties easier or more difficult to bear. They were offered psychosocial intervention that consisted largely of therapeutic communication followed by a postintervention assessment of their use of denial as a defense mechanism. The use of denial by patients in a control group was also assessed, but these patients did not receive the psychosocial intervention. The researcher concluded that terminally ill patients using denial respond favorably to sensitive psychosocial intervention, as indicated by decreased scores on an instrument to measure denial. Connor acknowledged, however, that additional research is needed to gauge the timing of such interventions according to some measure of patient readiness. In a more recent study, researchers reported that while the majority of a sample of 200 patients with advanced cancer in their final weeks of life were completely aware of their medical prognosis, a combined total of 26. Depression was nearly three times greater in those patients who were unaware of their prognosis. The researchers concluded that denial of prognosis is more likely in patients with underlying psychological or emotional distress.

Topical antibiotics, such as 1% silver sulfadiazine cream (Silvadene), may be prescribed for use on areas of moist desquamation (painful, red, moist skin). As a result, the hair is brittle and may fall out or break off at the surface of the scalp. Hair loss usually begins within 2 to 3 weeks after the initiation of treatment; regrowth begins within 8 weeks after the last treatment. Many health care providers view hair loss as a minor problem when compared with the potentially life-threatening consequences of cancer. For many patients, however, hair loss is a major assault on body image, resulting in depression, anxiety, anger, rejection, and isolation. To patients and families, hair loss can serve as a constant reminder of the challenges cancer places on their coping abilities, interpersonal relationships, and sexuality. Patients are encouraged to acquire a wig or hairpiece before hair loss occurs so that the replacement matches their own hair. Nurses can refer patients to supportive programs, such as "Look Good, Feel Better," offered by the American Cancer Soci- Nursing Interventions the patient with cancer is at risk for various adverse effects of therapy and complications. The nurse in all health care settings, including the home, assists the patient and family in managing these problems. As many as 40% of patients receiving chemotherapy experience some degree of stomatitis during treatment. Stomatitis is characterized by mild redness (erythema) and edema or, if severe, by painful ulcerations, bleeding, and secondary infection. In severe cases of stomatitis, cancer therapy may be temporarily halted until the inflammation decreases. As a result of normal everyday wear and tear, the epithelial cells that line the oral cavity undergo rapid turnover and slough off routinely. Poor oral hygiene, existing dental disease, use of other medications that dry mucous membranes, and impaired nutritional status contribute to morbidity associated with stomatitis. Radiation-induced xerostomia (dry mouth) associated with decreased function of the salivary glands may contribute to stomatitis in patients who have received radiation to the head and neck. Myelosuppression (bone marrow depression) resulting from underlying disease or its treatment predisposes the patient to oral bleeding and infection. Pain associated with ulcerated oral tissues can significantly interfere with nutritional intake, speech, and a willingness to maintain oral hygiene. Although multiple studies on stomatitis have been published, the optimal prevention and treatment approaches have not been identified. However, most clinicians agree that good oral hygiene that includes brushing, flossing, and rinsing is necessary to minimize the risk for oral complications associated with cancer therapies. Soft-bristled toothbrushes and nonabrasive toothpaste prevent or reduce trauma to the oral mucosa. Oral swabs with spongelike applicators may be used in place of a toothbrush for painful oral tissues. Flossing may be performed unless it causes pain or unless platelet levels are below 40,000/mm3 (0. Knowledge that hair usually begins to regrow after completing therapy may comfort some patients, although the color and texture of the new hair may be different. Secondary growth of cancer cells into the skin may result in redness (erythematous areas) or can progress to wounds involving tissue necrosis and infection. Although this type of lesion is most often associated with breast cancer and head and neck cancers, it can also occur with lymphoma, leukemia, melanoma, and cancers of the lung, uterus, kidney, colon, and bladder. The development of severe skin lesions is usually associated with a poor prognosis for extended survival. Ulcerating skin lesions usually indicate widely disseminated disease unlikely to be eradicated. Nursing care includes carefully assessing and cleansing the skin, reducing superficial bacteria, controlling bleeding, reducing odor, and protecting the skin from pain and further trauma.

See Chapter 13 for a more detailed discussion of pain and the factors influencing the pain experience. Opioid analgesics are commonly prescribed for pain and immediate postoperative restlessness. With a preventive approach, the medication is administered at prescribed intervals rather than when the pain becomes severe or unbearable. Study Sample and Design this was a descriptive, correlational, mixed between-within subjects design. A convenience sample of 94 nurses from four cardiovascular units in three university-affiliated hospitals were interviewed, along with 225 of their assigned patients. Findings the majority of patients reported moderate to severe pain during the previous 24 hours (86%) and at the time of interview while moving around (68%). Chart review data indicated undermedication of patients for pain, with patients receiving only 47% of their prescribed analgesia. While hospital policy required documentation of pain as a fifth vital sign, charting of pain was minimal and high pain ratings did not result in an increase in analgesics administered. This risk, however, is negligible with the use of opioid medications for short-term pain control. Self-administration promotes patient participation in care, eliminates delayed administration of pain medications, and maintains a therapeutic drug level. Upon sensing pain, the patient activates the medication-delivering pump with a hand-held button. Epidural Infusions and Intrapleural Anesthesia For thoracic, orthopedic, obstetric, and major abdominal surgery, certain opioid analgesics may be administered by epidural or intrathecal infusion. Epidural infusions are used with caution in chest procedures because the effect of the analgesic may ascend along the spinal cord and affect respiration. Intrapleural anesthesia involves the administration of local anesthetic by a catheter between the parietal and visceral pleura. It provides sensory anesthesia without affecting motor function to the intercostal muscles. This anesthesia allows more effective coughing and deep breathing in conditions such as cholecystectomy, renal surgery, and rib fractures in which pain in the thoracic region would interfere with these functions. A local opioid or a combination anesthetic (opioid plus local anesthetic agent) is used in the epidural infusion. Intrapleural anesthesia has fewer adverse effects than systemic or spinal opioids and a lower incidence of urinary retention, vomiting, and pruritus when compared with thoracic epidural opioids (Moline, 2001; Quinn, 1999). Other Pain Relief Measures For pain that is difficult to control, a subcutaneous pain management system may be used. The catheter is attached to a pump that delivers a continuous amount of local anesthetic at a specific amount determined and prescribed by the physician. Complete absence of pain in the area of the surgical incision may not occur for a few weeks, depending on the site and nature of surgery, but the intensity of postoperative pain gradually subsides on subsequent days. However, pain control continues to be an important concern for the patient and the nurse. Effective pain management allows the patient to participate in care, perform deep-breathing and leg exercises, and tolerate activity. As stated previously, poor pain control contributes to postoperative complications and increased length of stay. The nurse continues to assess the pain level, the effectiveness of pain medication, and factors that influence pain tolerance (eg, energy level, stress level, cultural background, meaning of pain to the patient). The nurse explains that taking pain medication before the pain becomes intense is more effective and offers pain medication at intervals rather than waiting for the patient to request medication. Nonpharmacologic pain relief measures, such as imagery, relaxation, massage, application of heat or cold (if prescribed), and distraction, can be used to supplement medications (Seers & Carroll, 1998). A previously stable blood pressure that shows a downward trend of 5 mm Hg at each 15-minute reading should also be reported.

Some patients require life-long therapy with anticoagulants such as warfarin (eg, Coumadin). Patients with thrombotic disorders, particularly those with thrombophilia, should be assessed for concurrent risk factors for thrombosis and should avoid concomitant risk factors if possible. For example, use of tobacco and nicotine products exacerbates the problem and should be avoided. Just as for other conditions, patients with thrombotic disorders, particularly thrombophilia, should know the name of their specific condition and understand its significance. In many instances, younger patients with thrombophilia may not require prophylactic anticoagulation; however, with concomitant risk factors (eg, pregnancy), increasing age, or subsequent thrombotic events, prophylactic or lifelong anticoagulation therapy may be required. Being able to provide the health care provider with an accurate health history can be extremely useful and can help guide the selection of appropriate therapeutic interventions. Patients with hereditary disorders should be encouraged to have their siblings and children tested for the disorder. Ambulation or range-of-motion exercises as well as the use of elastic compression stockings should be initiated promptly to decrease stasis. Because the spleen is very vascular, severe hemorrhage can result if the spleen is ruptured. For example, an enlarged spleen may be the site of excessive destruction of blood cells. Laparoscopic splenectomy can be used in selected patients, with a resultant decrease in the postoperative morbidity rate. Complications that may result from surgery are atelectasis, pneumonia, abdominal distention, and abscess formation. Although young children are at the highest risk after splenectomy, all age groups are vulnerable to overwhelming lethal infections and should receive pneumovax before undergoing this surgical procedure if possible. Patients are instructed to seek prompt medical attention if even relatively minor symptoms of infection occur. Often, patients with high platelet counts have even higher counts after splenectomy- more than 1 million/mm3-which can predispose them to serious thrombotic or hemorrhagic problems. In therapeutic apheresis (or pheresis), blood is taken from the patient and passed through a centrifuge, where a specific component is separated from the blood and removed (Table 33-9). The entire system is closed, so the risk of bacterial contamination is extremely low. However, the temporary decrease provides a window of time until suppressive medications (eg, chemotherapy) can have therapeutic effects. Sometimes plasma is removed rather than blood cells-typically so that specific, abnormal proteins within the plasma will be transiently lowered until a long-term therapy can be initiated. Apheresis is also used to obtain larger amounts of platelets from a donor than can be provided from a single unit of whole blood. A unit of platelets obtained in this way is equivalent to six to eight units of platelets obtained from six to eight separate donors via standard blood donation methods. The use of these growth factors also stimulates the release of stem cells within the circulation. The actual procedure for therapeutic phlebotomy is similar to that for blood donation (see later discussion). Each component must be processed and stored differently to maximize the longevity of the viable cells and factors within it; each individual blood component has a different storage life. With special preservatives, they can be stored safely for up to 42 days before they must be discarded. In contrast, platelets must be stored at room temperature because they cannot withstand cold temperatures, and they last for only 5 days before they must be discarded. Plasma is immediately frozen to maintain the activity of the clotting factors within; it lasts for 1 year if it remains frozen. Patients with elevated hematocrits (eg, those with polycythemia vera) or excessive iron absorption (eg, hemochromatosis) can usually be managed by periodically removing 1 unit (about 500 mL) of whole blood. However, this temporary reduction permits a margin of safety while waiting for a longer-lasting treatment modality (eg, chemotherapy) to take effect. Apheresis can also be used to obtain stem cells for transplantation, either from a matched donor (allogenic) or from the patient (autologous). This contamination can cause some difficulties, particularly isosensitization, in certain patients.