Lung Cancer: Psychosocial Implications Lucille Specht Ryan
LTHOUGH lung cancer is the leading cause of cancer death, surprisingly little systematic research has been reported on the psychologic and social impact of this illness. While the diagnosis of any type of cancer is associated with the immediate and almost universal assumption that life itself is being threatened, ~ this assumption seems particularly relevant for persons with lung cancer. In fact, Weisman and Worden found that during the first 100 days following diagnosis, lung cancer patients experienced a greater amount of existential concern and emotional distress tharr persons with breast or colon cancer, Hodgkin's disease, or malignant melanoma. 2 The diagnosis of lung cancer is usually associated with a dismal prognostic outlook. It is often diagnosed when the disease is advanced and progression is likely to be rapid. The five-year survival rate has remained essentially unchanged over the past 30 years, 3 and 87% of all lung cancer patients die in spite of treatment. 4 In fact, most individuals diagnosed with lung cancer die within two years of diagnosis. Furthermore, those with small cell carcinoma of the lung have an even shorter life expectancy of ten to 14 months if treated and only two to three months if they receive no treatment. 5 Several issues can be raised concerning the psychosocial impact of lung cancer on the patient and family. First, the impact of a cancer with such a rapid course and poor prognosis is conceivably quite different from cancers of a much longer duration and with a greater chance for cure or remission. Alterations in work status, family and marital roles, and social activities may o c c u r precipitously and demand rapid adjustments on the part of all family members. Furthermore, the increasing incidence of lung cancer among women may have a significant impact on children and family life in general. Second, since at least 80% of all lung cancer is caused by smoking, and is
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From the Veterans Administration Afedical Center, Newington, CT and AntiochlNew England Graduate School, Keene, NH. Address reprint requests to Lucille Specht Ryan, RN, C, MS, PO Box 806, North Eastham, MA 02651. © 1987 by Grune & Stratton, Inc. 0749-2081187/0303-0008505.0010
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thus preventable, 5 one wonders whether feelings of guilt and blame contribute to psychologic and interpersonal difficulties for these patients and their families. Third, feelings of anxiety, triggered by both physiologic alterations and emotional responses, are prevalent and may contribute to increased emotional distress. Fourth, the cognitive, behavioral, and emotional changes associated with the high incidence o f brain metastases among these patients may result in unique psychosocial problems for both patients and family members. This paper will discuss the psychosocial implications of lung cancer for the patient and his or her family. The following issues will be reviewed: (1) the psychological factors that are associated with the biologic changes in lung cancer; (2) the patient's emotional responses to the diagnosis and treatment; (3) the impact of lung cancer on the family; and (4) psychosocial interventions used with lung cancer patients and their families. THE IMPACT ON THE INDIVIDUAL
Psychologic Concomitants of Biologic Alterations Several biologic changes associated with lung cancer result in cognitive, behavioral, and/or affective changes. Often these symptoms are attributed to psychiatric illness. According to Croft and Wilkinson, as high as 16% of persons with lung cancer have nonmetastatic cerebral effects with associated mental status changes. 6 Symptoms of depression and manic psychosis in lung cancer patients, associated with ectopically produced psychoactive hormonal substances such as parathormone, vasopressin, ACTH, enkephalins, and beta-endorphins, have been reported. 7,8 Anderson and McHugh describe the case of a woman who attempted suicide following sever~l weeks of depression. 7 This depression was later found to be a symptom of Cushing's syndrome resulting from ectopic ACTH production associated with a small cell carcinoma of the lung. The importance o f identifying these underlying biologic factors have been emphasized. 9 In this way, the initiation of appropriate treatment may result in a reduction in the psychologic symptoms and improvement in the patient's psychosocial functioning. Brain metastases, which frequently occur with Seminars in Oncology Nursing, Vol 3, No 3 (August), 1987: pp 222-227
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lung cancer, are associated with changes in behavior and mental status t° and, when compared with liver metastasis among lung cancer patients, lead to a significantly greater deterioration in performance status and increased time spent in the hospital. H Lung cancer is the most common primary site of brain metastasis 12 and accounts for 46% of all metastatic tumors to the brain. 13 Accord!ng to Posner and Chemik, 34% of patients with lung cancer develop intracranial metastases.12 While only one third of patients with brain metastases complain of behavioral or mental status change, impaired cognitive functioning is found in three fourths of these individuals when careful mental status assessment is done) 4 Careful assessment is important because unreported cognitive changes may undermine a patient's self-esteem and result in depression and strained interpersonal relationships. In general, the type of mental status changes that occur depends upon the location of the metastases. The parietal lobes are the most common site for metastatic spread, 15 and focal disturbances of mental function such as aphasia (inability to express or understand verbal symbols), agnosia (inability to recognize objects), and apraxia (inability to execute purposeful movements) are the result of specific compression and/or destruction of nervous tissue in this area. A common presenting complaint is an apraxia for dressing which is associated with right parietal lesions) 6 The presence of a left parietal lesion may leave the patient feeling perplexed about his inability to carry out certain simple acts like reading or calculating mathematic problems. Lesions involving the limbic system frequently produce loss of recent memory and other behavioral and emotional changes that may resemble functional psychoses. Furthermore, lung cancer is usually associated with multiple brain metastases, ~s which results in generalized signs of increased intracranial pressure, including headache, confusion, lethargy, vomiting, and seizures. 16 Altered mental status may be very subtle at first and only evident to family members. Complaints of sleeping more than usual, difficulty concentrating, clumsiness, and/or memory loss o c c u r . 16,17 Family members may report that the patient is more irritable, forgetful, and demonstrates poor judgment in making decisions. Cohen describes the loss of self-esteem and strained family rela-
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tionships that resulted when one woman with brain metastases from a primary lung cancer experienced periods of disorientation, fatigue, and other mental status changes that prevented her from performing her usual work, marital, and family roles. 18 The impact on both the patient and family can be significant. Dyspnea, resulting from the obstructive and restrictive respiratory processes associated with lung cancer, frequently occurs 19 and may be present at the time of diagnosis or develop during the course of illness. 2° Dyspnea, defined as difficult, labored or uncomfortable breathing, 2~ often occurs with other symptoms such as cough, wheezing and chest pain. 22 Dyspnea is a subjective sensation that involves the patient's perception and reaction to the sensation. 23 According to Hargreaves, difficult breathing is frequently related to deep concerns about life and death and primitive fears of suffocation.24 The lungs are viewed as a source of life. Thus, respiratory problems, by their very nature, are anxiety-provoking. This may be especially true for the cancer patient who frequently views dyspnea as a sign of advancing tumor growth. 25 A vicious cycle may ensue with dyspnea pi'oducing anxiety which, in turn, increases oxygen consumption and further aggrevates the dyspnea. 26 It is important for the nurse to recognize this anxiety and to help the patient explore fears about his illness and life, changes in lifestyle, loss of control, and loss of self-esteem. 26 Maxwell encourages an education approach that may help to allay fears, ie, showing the patient and family what his lungs look like on x-ray, explaining that exertional dyspnea is to be expected, and explaining that he is receiving sufficient oxygenY Teaching the patient to use relaxation techniques is also useful to decrease anxiety and the body's demand for oxygen. 26 Dyspnea, among lung cancer patients, has been associated with several changes in psychologic and social functioning. Brown and associates studied 30 lung cancer patients to obtain descriptions of the sensation of dyspnea. 27 Feelings of anger, helplessness, depression, loss of strength, agitation, anxiety, nervousness, and fear were some of the emotions and thoughts described by these patients during their dyspneic episodes. 27 In addition, these patients report that physical activities and emotional excitement, including crying and laughing, often precipitated episodes of dyspnea.
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Minor disagreements with spouses, anxieties caused by family and friends, and concerns about the future were seen as precipitants of shortness of breath. The vast majority of these patients reported that they had decreased or modified their activities because of dyspnea, and most had transferred activities of daily living and household responsibilities to family, friends, or hired help. In line with this, Barofsky reports that, except for patients with leukemia and lymphoma, lung cancer patients have the greatest reduction in employment. 28 Furthermore, most of Brown's subjects said they had socially isolated themselves from friends and outside contacts because of fatigue and decreased energy. 27 This finding is consistent with the results of another study that reported a high degree of social isolation among patients with lung cancer. 29 Perhaps the patient's efforts to avoid emotional excitement and prevent episodes of dyspnea result in social isolation. Emotional Response to the Diagnosis and Treatment Several emotional responses to the diagnosis of lung cancer, including depression and anxiety, have been reported. In one study, 41% of lung cancer patients were found to have high levels of anxiety, z9 Another study reported that 16% of newly diagnosed lung cancer patients are depressed, with those patients having extrathoracic spread significantly more depressed than those with no evidence of distant metastases. 3° Furthermore, depression among lung cancer patients has been correlated with physical disability and performance status. 3°,31 The greater the physical disability, the greater the incidence of depression. This data is consistent with the findings of Cassileth et al who report that, among patients with a wide range of chronic illnesses, increasing mental health symptoms are associated with decreasing physical status. 32 Of particular interest is the finding that, as time goes on, lung cancer patients appear to become less depressed. Hughes reported that patients receiving active treatment were less depressed two to three months following diagnosis, in spite of deterioration in their physical condition. 33 According to this investigator, the patients indicated an appreciation of active treatment, even if these treatments had done little to improve the physical
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symptoms or had produced unpleasant side effects. 33 On the other hand, those patients who had not received treatment were more likely to be distressed or dissatisfied. A similar pattern was found in another study. 34 When compared with patients with myocardial infarction, newly diagnosed lung cancer patients reported significantly more mood disturbance and symptom distress. When reevaluated one month later, however, although the patients with lung cancer continued to report the same amount of symptom distress, they had fewer concerns and an improvement in mood. Even though their objective status was unchanged, their concerns and mood had improved significantly.34 A follow-up on these same patients three and six months after diagnosis found that, in spite of reported deteriorating physical status and more severe symptoms, a positive attitude prevailed. 35 One explanation for this finding comes from a study which found that lung cancer patients and their spouses frequently expressed the need not to give up hope. 36 The basis of this hope seemed to be that the disease was at least treatable and that the doctor had not given up hope as evidenced by the fact that active treatment continued. 36 Thus, treatment may signify hope and result in an improved mood and less depression. Alternatively, denial of the severity of illness may explain the reported changes in mood and level of depression. Levine and Zigler found that patients with lung cancer employ greater denial than patients with heart disease. 37 The choice of treatment may have important implications for quality of life and psychologic well-being. McNeil et al reported that some patients with surgically resectable lung cancers preferred to have radiation therapy. 38 These patients were not willing to take the risk of increased mortality and morbidity associated with surgery, even if it meant the possibility of prolonged survival. Another study found differences in psychologic sequela depending upon the type of chemotherapy regimen used. Silberfarb et al reported that patients with small cell carcinoma of the lung who received a chemotherapy regimen including vincristine reported more depression and fatigue than a group receiving a chemotherapy regimen without vincristine despite the absence of differences in tumor response. 39 The investigators in both of these studies emphasize the need to consider pa-
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tient attitudes as well as the potential for psychologic morbidity when recommending treatment choice.
clear family. Often these difficulties i n v o l v e d avoidance behavior by individuals with whom they had been close.
IMPACT OF LUNG CANCER ON THE FAMILY
PSYCHOSOCIAL INTERVENTIONS
Little is reported about the impact of lung cancer on the family. The results of one pilot study indicate that alterations in marital and family relationships o c c u r . 36 Role changes were reported by ten of the 15 couples interviewed with either the spouse or the children taking over the patients' job. Parent-child problems were observed, with almost half of the families with a teenager at home reporting an increase in problematic behavior. Communication problems between spouses were reported. For most couples an inconsistency in the perception about communication occurred. Patients more often than spouses reported that the couple talked together. Furthermore, most of the spouses did not share their fears and concerns with the patients. Heinrich et al found a similar pattern of difficulty in interpersonal relationships. 4° These investigators studied patients with a wide variety of cancers including a subset of patients with lung cancer. While the patient in this study maintained a desire for affection with his or her spouse, communication with spouse, sexuality with spouse, and interactions with family and friends were all perceived as presenting problems. By far the most significant problem for both married and unmarried patients was related to sexuality. All of these findings are consistent with the results of other studies on the interpersonal relationships of patients with different types of cancer. 33,4~.42 Cooper emphasizes that the needs of the spouse of the lung cancer patient are often unmet. 36 Among her sample, twice as many spouses as patients reported the presence of signs of stress such as nervousness, sleeplessness, loss of appetite, inability to concentrate and irritability. While both patient and spouse expressed feelings of helplessness, the meaning of helplessness differed. The patient disliked the dependence on others resulting from declining physical strength, while the spouses felt helpless as they stood empty-handed and watched their mates deteriorate. 36 These spouses reported feeling alone more often than did the patients. Furthermore, half of the couples experienced some recent difficulty or disappointment in their relationships with others outside the nu-
Psychologic interventions for lung cancer patients and their families, including behavioral therapy, 43 psychosocial counseling for late stage lung cancer patients, 44 and counseling for the key significant other of newly diagnosed lung cancer patients31 are reported in the literature. While the outcome of these interventions is variable, the problem appears to be more of appropriate client selection rather than the treatment modality used. Most of the individuals in these studies were not highly impaired in their ability to perform activities of daily living or in their emotional adjustment to the illness. In spite of this fact, Linnet al report increased perceived quality of life among their subjects receiving a psychosocial counseling intervention .44 In a review of 400 lung cancer patients, Bleeker found that only 1% to 2% of lung cancer patients require psychologic intervention. 4s He suggests that psychotherapy is beneficial for those patients who are denying in an unusually strong or pathologic way (harming themselves or their family) and for those reacting to the awareness of dying in an unusual way, especially with depression. According to Bleeker, the aim of psychotherapeutic intervention is to restore the normal process of mourning by facilitating grief, as While referral for psychotherapy may not be generally indicated, the nurse is in a pivotal role to promote healthy adaptation and facilitate positive coping strategies for these patients and families. An empathic, supportive approach by the nurse is important. Listening to the patient and family member's concerns and fears and correcting misconceptions may help to allay fears and increase their sense of control. Education about the disease process and treatment is important. When dyspnea and/or brain metastases are present, teaching the family how to structure their home environment can help to promote optimal functioning. SUMMARY
In summary, the literature on the psychosocial impact of lung cancer on the patient and family has been reviewed. While more information is
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available on the psychologic aspects of the diagnosis and treatment of the patient, there is a paucity of data about the impact on the family. Furthermore, no information was found regarding the impact of the rapidly increasing incidence of lung cancer among women. One can only hypothesize that an illness with such a short trajectory has a different impact than a longer chronic illness such as breast cancer. Perhaps some of the information about the impact of breast cancer pertains to women with lung cancer, but comparison studies are needed. Additionally, there is no information
about the psychologic impact of the fact that smoking causes lung cancer. While one study found that over half of the lung cancer patients studied attributed the cause of their cancer to smoking or noxious fumes and chemicals, 46 no study was found that addressed the impact of this attribution on the patient's emotional status or interpersonal relationships with significant others. Based on this review it seems evident that the psychosocial impact of lung cancer is a fertile ground for further nursing research.
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