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Communicating the diagnosis of lung cancer
Respiratory Medicine (1993) 87, 61-63
Communicating the diagnosis of lung cancer L. SELL, B. DEVLIN, S. J. BOURKE*, N. C. MUNRO, P. A. CORRIS AND G. J. GIBSON
Department qfl Respiratory Medicine, Freeman Hospital, Newcastle upon Tyne NE7 7DN, U.K.
In order to assess their reaction to the information gi~;en, 50 patients underwent a semi-structured interview with a social worker within 1 week of having been told the diagnosis of lung cancer. There were 32 men and 18 women with a mean age of 63 (range 38 82) years. Thirty-eight (76%) belonged to Registrar General social class IV or V, and 45 (90%) had left school at the age of 15 years. Two patients were unaware of the diagnosis despite having been told that they had lung cancer. Two patients would have preferred not to have been told the diagnosis and two were unsure; while 46 (92%) felt that telling them the diagnosis truthfully had been correct. No patient felt that they had been given too much information,but 13 (26%) indicated a lack of information about prognosis. Despite being told 'bad news', 31 (62%) felt more reassured after their interview with the doctor, 5 (10%) felt less reassured, and 14 (28%) were uncertain. Twenty-one (42%) patients were experiencing a sense of guilt or regret at having smoked. Many patients had concerns about specific symptoms which they expected to suffer. In general, patients wanted to be told their diagnosis truthfully and required a high level of informationl Many patients felt reassured by the discussion of such details. Introduction
Telling patients that they have lung cancer is a particularly difficult clinical skill (1,2). Advice on how to conduct this crucial interview is often anecdotal and based on perceived personal experiences rather than on the results of formal studies which are difficult to perform. Attitudes towards health care in general, and towards cancer in particular, have been changing rapidly in recent years with patients now tending to take a more active role in the management of their illnesses (3-7). Communication between doctor and patient is clearly of the utmost importance but is a highly complex phenomenon involving much more than the simple giving of information (5). This is especially so when talking to patients about lung cancer, and studies of patients with other forms of cancer may not be directly relevant to the needs of this particular group of patients (7). We therefore undertook a study of patients' reactions to being told the diagnosis of lung cancer in order to obtain objective data from such patients which could be used to improve the communication skills of chest physicians faced with this particular clinical situation. Methods
The study population consisted of 50 patients attending the department of respiratory medicine with a diagnosis of lung cancer. During the study period the department continued its usual general policy Received 12 May 1992 and accepted 31 July 1992. *To whom correspondence should be addressed.
0954-6111/93/010061 + 03 $08.00/0
of truthful disclosure to the patient of information regarding diagnosis, treatment and prognosis by a senior doctor who answered questions as required, but each consultation was conducted on an individual basis as considered appropriate by the doctor. Patients then underwent a semi-structured interview with a social worker within 1 week of having been told the diagnosis. Details were recorded regarding the patient's age, sex, and smoking history. Their educational status was assessed by documenting the age at which they had left formal education, and their social status was classified using the Registrar General's classification system (8,9) which defines five main categories of social class based upon occupation (I, professional, e.g. doctor; II, intermediate, e.g. teacher; III, skilled, e.g. secretary; IV, partly skilled, e.g. agriculture worker; V, unskilled, e.g. labourer). Patients were asked to discuss their diagnosis and the terms used and level of awareness displayed were noted. They were then asked if: (1) telling them the diagnosis truthfully had been correct; (2) they had received adequate information; (3) they felt more, or less reassured after their consultation with the doctor; (4) they had concerns about specific symptoms which they expected to suffer; and (5) they experienced any feelings of guilt or regret at having smoked. Any additional comments were also noted. Results
The study population consisted of 32 men and 18 women with a mean age of 63 years (range 38-82 9 1993Bailli&reTindall
62
L. Sell et al.
years). Forty-five (90%) patients had left school at the age of 15 years and had received no further formal education. Thirty-eight (76%) patients belonged to Registrar General social class IV or V, eight to class III and two to class II. All patients had smoked cigarettes and 26 (52%) were current smokers. The planned treatments were chemotherapy for 18, radiotherapy for 18, surgery for two and symptom relief only for 12 patients. Two patients were unaware of the diagnosis despite having been told that they had lung cancer; one patient seemed to have had difficulty understanding the information given and one appeared to be exhibiting denial. When discussing their diagnosis 27 (54%) patients used the term 'cancer', 22 (44%) 'tumour', 17 (34%) 'growth' and 4 (8%) 'malignant' with some patients using several terms. Forty-six patients (92 %) indicated that telling them the diagnosis truthfully had been correct, two said that they would have preferred not to have been told, and two were unsure. No patient felt that they had been given too much information, but 13 (26%) indicated that they had not received sufficient information, and most of these patients indicated a lack of information about prognosis. Despite being told 'bad news' 31 (62%) felt more reassured after their consultation with the doctor, whereas five (10%) felt less reassured and 14 (28%) were uncertain, Many patients had concerns about specific symptoms which they expected to suffer including dyspnoea in 13 patients, pain in ten and haemoptysis in seven patients. Twenty-one (42%) patients were experiencing a sense of 'guilt or regret' at having smoked, 28 (56%) felt no such emotion, and one patient was unsure. Discussion
The importance of socioeconomic factors on the prevalence of lung cancer is apparent in this study with the population consisting mainly of older, so-called 'working class' patients who had had limited formal education (10,11). These factors probably reflect smoking habits and indeed all patients had smoked cigarettes at some time. Such socioeconomic factors clearly differentiate patients with lung cancer from patients with others forms of cancer, such as breast cancer, and may influence their attitude towards being told the diagnosis. The overwhelming majority of patients stated they had wanted to know the diagnosis and only two patients would have preferred not to have been told. Both these patients appeared to display some ambivalence in their attitude in that they also indicated that they had not received enough information. Despite being told 'bad news' many patients felt more
reassured after their consultation with the doctor. Although this may seem paradoxical, previous studies have suggested that lack of information increases stress and anxiety, particularly where patients suspect the true diagnosis, and that not being told what is wrong engenders a sense of loss of control and limits adaptive behaviour for coping with threat (1,2,12). Conversely, explaining and understanding patients' concerns, even when they cannot be resolved, results in a significant fall in anxiety (5). In many cases patients were already focusing on specific symptoms which they expected to suffer and these apprehensions may well have been amenable to greater reassurance. A significant number of patients felt that they had not received sufficient information, and many of these specifically indicated a lack of information about prognosis. This may partially reflect the timing of the study, which was undertaken within 1 week of patients being told the diagnosis, and many doctors may prefer to postpone discussion of prognosis till later consultations when the patient has had time to come to terms with the diagnosis. This highlights the complexity of communication between doctor and patient, which involves not only the tranmission of information but also the patients' reaction to an adverse event and his pattern of adaptive behaviour when coping with threat. In categorizing patterns of coping behaviour, Miller et al. (12) divided patients into those who demand more information about their diagnosis ('monitors') and those who cognitively distract from threatening information ('blunters'). Paradoxically, patients who complain about lack of information may be the best informed (4,12). A particularly difficult emotion facing patients with lung cancer is the knowledge that they may have contributed to the development of the disease by smoking. Patients differed in this regard with 42% admitting to a sense of 'guilt or regret' at having smoked and 58% experiencing no such emotion. Previous studies indicate that many patients do not acknowledge the close relationship between smoking and lung cancer and it has been suggested that this denial may be important in maintenance of self-esteem (13,14). Lung cancer is not a single disease with uniform treatment and patients differ greatly in their needs and in their response to the disease. Communicating the diagnosis of lung cancer must therefore be done on an individual basis rather than in accordance with any generalized policy. Encouraging patients to ask questions may be the best way of determining how much information the patient wants and when he is ready to receive it. This study suggests that most patients with lung cancer want to be told their diagnosis truthfully and request a high level of information. It may be
C o m m u n i c a t i n g the diagnosis o f lung cancer encouraging to doctors to k n o w t h a t m a n y patients feel more reassured by discussion o f such details.
References 1. Partridge MR. Lung cancer and communication. Respir Med 1989; 83: 379-380. 2. Spencer Jones J. Telling the right patient. Br M e d J 1981; 283:291-292. 3. Aitken-Swan J, Easson EC. Reactions of cancer patients on being told their diagnosis. Br Med J 1959; 1: 779-783. 4. Armstrong D. What do patients want? Br Med J 1991; 303:261-262. 5. Simpson M, Buckman R, Stewart M et al. Doctor-patient communication: the Toronto consensus statement. Br M e d J 1991; 303: 1385-1387. 6. Davy I. lnformation resources for cancer patients and their families. Sheffield: University department of information studies, occasional publication series number 10, 1990.
63
7. Cancer Relief MacMillan Fund. The experience of a cancer diagnosis research report; Sept 1991. London, Cancer Relief MacMillan Fund 1991. 8. Registrar General Social Class. Office of population censuses and surveys. Classification of occupations. London: HMSO, 1980. 9. Liberatos P, Link BG, Kelsey JL. The measurement of social class in epidemiology. Epidemiol Rev 1988; 10: 8~121. 10. Williams FLR, Lloyd O. Trends in lung cancer mortality in Scotland and their relation to cigarette smoking and social class. Scot M e d J 1991; 36: 175-178. 11. Bernhard J, Ganz PA. Psychosocial issues in lung cancer patients. Chest 1991; 99: 21(~223. 12. Miller SM, Brody DS, Summerton J. Styles of coping with threat: implications for health. J Pers Soc Psychol 1988; 54" 14~148. 13. Hughes J. Depressive illness and lung cancer. Eur J Surg Oncology 1985; 11: 21-24. 14. Levine J, Zigler E. Denial and self-image in stroke, lung cancer, and heart disease patients. J Consult Clin Psychol 1975;43:751 757.
Communicating the diagnosis of lung cancer L. SELL, B. DEVLIN, S. J. BOURKE*, N. C. MUNRO, P. A. CORRIS AND G. J. GIBSON
Department qfl Respiratory Medicine, Freeman Hospital, Newcastle upon Tyne NE7 7DN, U.K.
In order to assess their reaction to the information gi~;en, 50 patients underwent a semi-structured interview with a social worker within 1 week of having been told the diagnosis of lung cancer. There were 32 men and 18 women with a mean age of 63 (range 38 82) years. Thirty-eight (76%) belonged to Registrar General social class IV or V, and 45 (90%) had left school at the age of 15 years. Two patients were unaware of the diagnosis despite having been told that they had lung cancer. Two patients would have preferred not to have been told the diagnosis and two were unsure; while 46 (92%) felt that telling them the diagnosis truthfully had been correct. No patient felt that they had been given too much information,but 13 (26%) indicated a lack of information about prognosis. Despite being told 'bad news', 31 (62%) felt more reassured after their interview with the doctor, 5 (10%) felt less reassured, and 14 (28%) were uncertain. Twenty-one (42%) patients were experiencing a sense of guilt or regret at having smoked. Many patients had concerns about specific symptoms which they expected to suffer. In general, patients wanted to be told their diagnosis truthfully and required a high level of informationl Many patients felt reassured by the discussion of such details. Introduction
Telling patients that they have lung cancer is a particularly difficult clinical skill (1,2). Advice on how to conduct this crucial interview is often anecdotal and based on perceived personal experiences rather than on the results of formal studies which are difficult to perform. Attitudes towards health care in general, and towards cancer in particular, have been changing rapidly in recent years with patients now tending to take a more active role in the management of their illnesses (3-7). Communication between doctor and patient is clearly of the utmost importance but is a highly complex phenomenon involving much more than the simple giving of information (5). This is especially so when talking to patients about lung cancer, and studies of patients with other forms of cancer may not be directly relevant to the needs of this particular group of patients (7). We therefore undertook a study of patients' reactions to being told the diagnosis of lung cancer in order to obtain objective data from such patients which could be used to improve the communication skills of chest physicians faced with this particular clinical situation. Methods
The study population consisted of 50 patients attending the department of respiratory medicine with a diagnosis of lung cancer. During the study period the department continued its usual general policy Received 12 May 1992 and accepted 31 July 1992. *To whom correspondence should be addressed.
0954-6111/93/010061 + 03 $08.00/0
of truthful disclosure to the patient of information regarding diagnosis, treatment and prognosis by a senior doctor who answered questions as required, but each consultation was conducted on an individual basis as considered appropriate by the doctor. Patients then underwent a semi-structured interview with a social worker within 1 week of having been told the diagnosis. Details were recorded regarding the patient's age, sex, and smoking history. Their educational status was assessed by documenting the age at which they had left formal education, and their social status was classified using the Registrar General's classification system (8,9) which defines five main categories of social class based upon occupation (I, professional, e.g. doctor; II, intermediate, e.g. teacher; III, skilled, e.g. secretary; IV, partly skilled, e.g. agriculture worker; V, unskilled, e.g. labourer). Patients were asked to discuss their diagnosis and the terms used and level of awareness displayed were noted. They were then asked if: (1) telling them the diagnosis truthfully had been correct; (2) they had received adequate information; (3) they felt more, or less reassured after their consultation with the doctor; (4) they had concerns about specific symptoms which they expected to suffer; and (5) they experienced any feelings of guilt or regret at having smoked. Any additional comments were also noted. Results
The study population consisted of 32 men and 18 women with a mean age of 63 years (range 38-82 9 1993Bailli&reTindall
62
L. Sell et al.
years). Forty-five (90%) patients had left school at the age of 15 years and had received no further formal education. Thirty-eight (76%) patients belonged to Registrar General social class IV or V, eight to class III and two to class II. All patients had smoked cigarettes and 26 (52%) were current smokers. The planned treatments were chemotherapy for 18, radiotherapy for 18, surgery for two and symptom relief only for 12 patients. Two patients were unaware of the diagnosis despite having been told that they had lung cancer; one patient seemed to have had difficulty understanding the information given and one appeared to be exhibiting denial. When discussing their diagnosis 27 (54%) patients used the term 'cancer', 22 (44%) 'tumour', 17 (34%) 'growth' and 4 (8%) 'malignant' with some patients using several terms. Forty-six patients (92 %) indicated that telling them the diagnosis truthfully had been correct, two said that they would have preferred not to have been told, and two were unsure. No patient felt that they had been given too much information, but 13 (26%) indicated that they had not received sufficient information, and most of these patients indicated a lack of information about prognosis. Despite being told 'bad news' 31 (62%) felt more reassured after their consultation with the doctor, whereas five (10%) felt less reassured and 14 (28%) were uncertain, Many patients had concerns about specific symptoms which they expected to suffer including dyspnoea in 13 patients, pain in ten and haemoptysis in seven patients. Twenty-one (42%) patients were experiencing a sense of 'guilt or regret' at having smoked, 28 (56%) felt no such emotion, and one patient was unsure. Discussion
The importance of socioeconomic factors on the prevalence of lung cancer is apparent in this study with the population consisting mainly of older, so-called 'working class' patients who had had limited formal education (10,11). These factors probably reflect smoking habits and indeed all patients had smoked cigarettes at some time. Such socioeconomic factors clearly differentiate patients with lung cancer from patients with others forms of cancer, such as breast cancer, and may influence their attitude towards being told the diagnosis. The overwhelming majority of patients stated they had wanted to know the diagnosis and only two patients would have preferred not to have been told. Both these patients appeared to display some ambivalence in their attitude in that they also indicated that they had not received enough information. Despite being told 'bad news' many patients felt more
reassured after their consultation with the doctor. Although this may seem paradoxical, previous studies have suggested that lack of information increases stress and anxiety, particularly where patients suspect the true diagnosis, and that not being told what is wrong engenders a sense of loss of control and limits adaptive behaviour for coping with threat (1,2,12). Conversely, explaining and understanding patients' concerns, even when they cannot be resolved, results in a significant fall in anxiety (5). In many cases patients were already focusing on specific symptoms which they expected to suffer and these apprehensions may well have been amenable to greater reassurance. A significant number of patients felt that they had not received sufficient information, and many of these specifically indicated a lack of information about prognosis. This may partially reflect the timing of the study, which was undertaken within 1 week of patients being told the diagnosis, and many doctors may prefer to postpone discussion of prognosis till later consultations when the patient has had time to come to terms with the diagnosis. This highlights the complexity of communication between doctor and patient, which involves not only the tranmission of information but also the patients' reaction to an adverse event and his pattern of adaptive behaviour when coping with threat. In categorizing patterns of coping behaviour, Miller et al. (12) divided patients into those who demand more information about their diagnosis ('monitors') and those who cognitively distract from threatening information ('blunters'). Paradoxically, patients who complain about lack of information may be the best informed (4,12). A particularly difficult emotion facing patients with lung cancer is the knowledge that they may have contributed to the development of the disease by smoking. Patients differed in this regard with 42% admitting to a sense of 'guilt or regret' at having smoked and 58% experiencing no such emotion. Previous studies indicate that many patients do not acknowledge the close relationship between smoking and lung cancer and it has been suggested that this denial may be important in maintenance of self-esteem (13,14). Lung cancer is not a single disease with uniform treatment and patients differ greatly in their needs and in their response to the disease. Communicating the diagnosis of lung cancer must therefore be done on an individual basis rather than in accordance with any generalized policy. Encouraging patients to ask questions may be the best way of determining how much information the patient wants and when he is ready to receive it. This study suggests that most patients with lung cancer want to be told their diagnosis truthfully and request a high level of information. It may be
C o m m u n i c a t i n g the diagnosis o f lung cancer encouraging to doctors to k n o w t h a t m a n y patients feel more reassured by discussion o f such details.
References 1. Partridge MR. Lung cancer and communication. Respir Med 1989; 83: 379-380. 2. Spencer Jones J. Telling the right patient. Br M e d J 1981; 283:291-292. 3. Aitken-Swan J, Easson EC. Reactions of cancer patients on being told their diagnosis. Br Med J 1959; 1: 779-783. 4. Armstrong D. What do patients want? Br Med J 1991; 303:261-262. 5. Simpson M, Buckman R, Stewart M et al. Doctor-patient communication: the Toronto consensus statement. Br M e d J 1991; 303: 1385-1387. 6. Davy I. lnformation resources for cancer patients and their families. Sheffield: University department of information studies, occasional publication series number 10, 1990.
63
7. Cancer Relief MacMillan Fund. The experience of a cancer diagnosis research report; Sept 1991. London, Cancer Relief MacMillan Fund 1991. 8. Registrar General Social Class. Office of population censuses and surveys. Classification of occupations. London: HMSO, 1980. 9. Liberatos P, Link BG, Kelsey JL. The measurement of social class in epidemiology. Epidemiol Rev 1988; 10: 8~121. 10. Williams FLR, Lloyd O. Trends in lung cancer mortality in Scotland and their relation to cigarette smoking and social class. Scot M e d J 1991; 36: 175-178. 11. Bernhard J, Ganz PA. Psychosocial issues in lung cancer patients. Chest 1991; 99: 21(~223. 12. Miller SM, Brody DS, Summerton J. Styles of coping with threat: implications for health. J Pers Soc Psychol 1988; 54" 14~148. 13. Hughes J. Depressive illness and lung cancer. Eur J Surg Oncology 1985; 11: 21-24. 14. Levine J, Zigler E. Denial and self-image in stroke, lung cancer, and heart disease patients. J Consult Clin Psychol 1975;43:751 757.