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© 2003 European Association of Cardio-Thoracic Surgery
Preoperative attitudes, fears and expectations of non-small cell lung cancer patientsDepartment of Thoracic Surgery, Otto Wagner Hospital, Vienna, Sanatoriumstrasse 2, A-1140 Vienna, Austria
* Corresponding author. Institute of Medical Psychology, University of Vienna, Severingasse 9, A-1090 Vienna, Austria. Tel.: +43-1-4277-65624; fax: +43-1-4277-9656 Received November 15, 2002; received in revised form February 20, 2003; accepted February 26, 2003
Knowing preoperative fears in cancer patients should help us to overcome perioperative psychological problems. One hundred and three patients underwent a semistructured interview addressing the effect of preoperative information on disease and forthcoming operation, attitude towards operation, expectations for the postoperative time and family support. Evaluation was performed by three psychologists by qualitative structured content analysis according to Mayring. Interrater reliability was 85%. Only 42 patients (40.8%) were informed in detail about their diagnosis. Eighty-three patients (80.6%) considered the information given on their disease and the forthcoming operation as understandable, 57 patient (55.3%) experienced reduction of fear. Eighty-three patients (80.6%) showed a positive attitude to the operation, 21 (20.4%) expected an impairment of later life after operation although becoming healthy again. Diffuse fears were named in 47 cases (45.6%), 19 (18.4%) patients were afraid of metastases, 11 (10.7%) of postoperative death, 19 (18.4%) of pain, 11 (10.7%) of mutilation and 17 (16.5%) of surgical complications. Seventy-three patients (70.9%) had good family support, seven (6.8%) not. Of the support group 32 patients (31%) considered their relatives' empathy as onerous. Problems, that are self-evident to the attending staff may be insurmountable for the patients. If we succeed to overcome their most simple fears they can focus their energy on mastering the postoperative course.
Key Words: Preoperative fears; Preoperative expectations; Family problems; Non small cell lung cancer
The preoperative situation is a unique setting for every patient and represents an extreme emotional stress. The time until operation is inspired with numerous fears and concerns related to the underlying disease and the imminent operation. It is aggravated in cancer patients who face the risk of inoperability, and, if operable, have to await the final pathology report before the success of the intervention can be judged – another period of several days of uncertainty, hope and new fears. The knowledge of these sorrows should help us to alleviate them when preoperative instruction is given and to improve the relationship between surgeon and patient.
A total of 103 patients scheduled for lung surgery for NSCLC between March 1997 and August 1998 were recruited for participation. No patient had undergone thoracic surgery before. Exclusion criteria comprised major psychiatric illness, emergency cases, preoperative mediastinoscopy, neoadjuvant chemotherapy, neuroendocrine carcinoma grade I and grade III and pulmonary metastasis originating from an extrapulmonary primum and if the patient was not German-speaking. Additionally, patients living more than 150 km from the hospital were excluded to allow optimal follow-up. Routine preoperative instruction included: position and length of surgical incision, extent of resected lung volume including the possibility of pneumonectomy (this point was discussed in relation to the preoperative spirometry), the possibility of exploratory thoracotomy in case of questionable anatomical or functional resectability. Concerning the postoperative period the importance of physiotherapy, cooperation with the medical staff, adequate pain therapy and the danger of postoperative pneumonia were stressed. As possible complications bleeding with rethoracotomy, infection of skin, empyema, bronchopleural fistula, and recurrent laryngeal nerve damage in case of left sided resections were discussed. Patients were informed that the final evaluation of their tumor stage was only possible after the arrival of the final pathology report. A semi-structured interview was conducted one to six days before operation. In all cases the patients had been informed about their disease and the forthcoming operation. The interview is shown in Appendix A. It was conducted by an experienced psychologist in a separated room to provide an optimal atmosphere for a free and unconstrained conversation, took between 10 and 20 min and was tape recorded. The interview was written down and underwent qualitative content analysis according to Mayring [1], which we describe briefly: the object of qualitative content analysis can be all sort of recorded communication (transcripts of interviews, discourses, protocols of observations, video tapes, documents, etc.). Content analysis analyzes not only the manifest content of the material, as its name may suggest, but additionally intends to identify contents at its differentiated levels: themes and main ideas of the text as primary content, context information as latent content. Contents were identified and coded according to the following criteria:
The identification of different subject matters and their expressions was performed independently by three psychologists and their results compared. In case of contradictory ratings the interview passages were reevaluated and discussed in the panel in order to achieve a consensus. Either the researchers finally agreed or the content had to be newly evaluated. Interrater reliability was established by having all investigators independently evaluate participants' responses. The investigators agreed on 85% of the initial coding categories. Subsequent discussion led to agreement by the researchers regarding the final data coding.
Age, sex, demographic data and educational status are shown in Table 1 [2,3]. Five patients (4.8%) underwent exploratory thoracotomy. They were not interviewed again.
3.1. Preoperative information on disease and forthcoming operation Ninety-two patients (89.3%) had been informed by their physician, eight (7.8%) by non-doctors; three (2.9%) patients did not know by whom they had been informed. Forty- four patients (42.7%) simply knew the name of their illness, 42 patients (40.8%) were informed in detail about their diagnosis, five patients (4.8%) thought that the definitive diagnosis could only be obtained after surgery; in 12 patients (11.7%) their answers could not be classified. Eighty-three patients (80.6%) considered the information given on their disease and the forthcoming operation as understandable. Nine patients (8.7%) were rather confused and in 11 patients (10.7%) no information could be obtained on how they had experienced the given information. However, only 57 patients (55.3%) experienced reduction of fear. Fourteen (13.6%) felt disquieted, one (1%) ambivalent, and 31 (30%) felt indifferent after the information. 3.2. Attitude towards operation Eighty-three patients (80.6%) showed a positive attitude to the operation; of these 35 (34%) spontaneously negated preoperative fears. Ten (9.7%) had had positive experiences after previous other operations, eight (7.8%) were encouraged by their roommates. However, nine patients (8.7%) who had had negative experiences with doctors before were rather skeptical and even showed a negative attitude towards the medical staff. Twenty-two men (21.3%), but only 15 women (14.5%), spontaneously mentioned preoperative fear. Twenty men (19.4%) and 13 women (12.6%) negated preoperative fears. The fears identified are shown in Table 2.
3.3. Expectations for the postoperative time Thirty-five patients (34%) expected to become healthy again, while 21 (20.4%) expected an impairment of later life after operation although becoming healthy again. Seven (6.8%) patients expected to die from cancer. The rest could not be classified. Most patients considered several factors important for a favorable course of their disease. Optimism and trust for the future was mentioned 57 times (55.3%), changing of life habits in 60 cases (58.3%) (e.g. cessation of smoking, sports, healthy nutrition). Forty-three patients (41.7%) intended to profit from their relatives' empathy and support, 37 (35.9%) relied on good medical compliance, and 26 (25.2%) on positive thinking and a strong will to survive. 3.4. Family support Seventeen patients (16.5%) gave no classifiable answers. Six patients (5.8%) had no families or friends. Seventy-three patients (70.9%) stressed that they received good support and empathy by their family, seven (6.8%) did not. Nevertheless, 32 patients (31%) stated that they considered their relatives' empathy as onerous, because they reacted with more shock and fear than the patients themselves.
Those patients receiving support by their family (
The communication of cancer diagnosis is one of the most difficult tasks in medicine. Much of cancer patients' dissatisfaction with the exchange of information stems from a lack of concordance between the perceptions of patients and doctors [4]. Even if the physician might think that the delivered information is sufficient this may not be the case for the patient himself. Although all our patients had been informed about their disease, only a small part of them had received sufficient information, a fact which is supported by the literature [5]. The same applies to routine preoperative instruction. Only 50% of our patients experienced a reduction of fear after preoperative instruction. The presence of preoperative anxiety is almost universal in the preoperative patient, no matter which diagnosis is present. It is influenced by uncertainty about the impending procedure, by past experiences of anesthesia and surgery and by suggestions of family, friends and fellow-patients and can be reliably measured by the release of catecholamines [6]. Patients, only recently having been informed about their diagnosis of lung cancer, usually are overwhelmed by the bad news and enter different phases of coping, which may not be completed when routine preoperative instruction is given. Therefore they may retain very little of the preoperative information, which serves to heighten anxiety and uncertainty [5]. Our results suggest that our communication techniques need to be refined: The optimal scenario would be if the patient himself repeats the previously given information and the doctor completes missing details. This prevents misunderstandings due to medical terminology which the patient is not familiar with. Further patients should be encouraged to discuss their main concerns without interruption [7]. Nearly half of all preoperative fears identified during the interview were diffuse. Thus the majority of patients are not able to specify their worries. The content analysis according to Mayring proved to be very useful to identify unconsciously expressed fears. We did not expect to be confronted with this rather high rate of fear of mutilation, pain or death due to operation and surgical complications. Addressing these fears helped to alleviate them during routine preoperative instruction. However, detailed explanations do not seem to reduce anxiety more than a relatively brief explanation [8]. Therefore it is not important how much is said but what is said. We must address the features of the disease and the forthcoming operation worrying the patient [9] without introducing new concerns. The fact that only 35% of our patients expected cure from their disease is worrisome, and it is to be asked why the remaining 65% are accepting an operation that does not cure them. The goal of surgery is taken for granted by the surgeon but obviously not by the patient, and therefore was not explained sufficiently either. Why patients only expect to be cured in 35%, but to die from cancer only in 7.5%, is a contradiction for which we have no explanation. The change of lifestyle should be accepted as an individual way of coping. In fact only cessation of smoking should be advised. All other possibilities are an expression of adapting one's life to completely new circumstances. Our number of one third of our patients belonging to the non-support group is confirmed by the literature [10]. The problem is a rather complex one and only some features can be addressed in this discussion: Partners have a more negative view of the cancer diagnosis and experience greater anxiety and depression [11]. The fear of recurrence and general health worries continue for patients and spouses well after diagnosis [12]. Spouses often do not know how to help to alleviate the suffering that they observe in their partners [13,14]. Patients have greater difficulty in adjusting in terms of family relationships [15] and have concerns how their families, especially their spouses, would handle the new situation [10]. We must accept that the diagnosis of lung cancer initiates different coping mechanisms in spouses and patients which are not yet completed when surgery takes place. It is obvious that partners are less frequently accessible and their needs may be less apparent. However, the family is a system. A crisis affects each family member and the family as a whole. This should be considered if information is given to spouses and family members and if tensions between patients and their family are observed.
Even if the diagnosis of cancer has already been communicated by another physician, the patient should be asked whether he had received appropriate information. It is advisable to explore the patients' family situation preoperatively and to distinguish between support and non-support patients to avoid intrafamilial tensions caused by inadequate information given to family members. During preoperative instruction the most simple fears should be addressed if the patient remains anxious. People who had bad experiences during previous operations will react more distrustfully and less cooperatively unless their fears are addressed.
We are very grateful for the financial support of the Wiener Krebshilfe during this study. doi:10.1016/S1569-9293(03)00048-3
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Abstract
1. Introduction
) could be divided into two groups. Forty-six patients (44.7%) gratefully accepted the support of their family (support group). The non-support group consisted of 27 patients (26.2%), who rejected their relatives' support due to several reasons: 16 (15.5%) considered themselves as loners, 11 (10.7%) wanted to spare their relatives due to different reasons.