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Answering the relatives of lung cancer patients
Br. c/. Dir.
Chest
(1984) 78, 388
ANSWERING THE RELATIVES OF LUNG CANCER PATIENTS J. SPENCER Royal
Victoria
Hospital,
JONES Folkestone,
CT19
5AN
Summary
Of 230 bronchial carcinoma patients, 30 underwent resection and 13 (5.6%) survived 5 years. Some of the domestic implications of the diagnosis were sought through study of the 200 non-surgically treated patients and by interviews with 191 of their relatives. Seventy-eight per cent of the relatives said that the illness had not been as bad as they had anticipated. Fifty-five per cent of patients died within 4 months of their first examination and 28.5% of relatives were unprepared for the suddenness of the death. Five per cent of patients died of a massive haemoptysis. For two-thirds of a subgroup of 56 patients, inability to get to the lavatory with help from one person, was a herald of death within 10 days. Some findings offered comfort for relatives living with a lung cancer patient: 41% of patients had no pain at all, 23.5% needed no treatment and 9.5% weakened and died very peacefully. Introduction Throughout life, close relatives are the principal comfort of most of us. When we are ill, they want to know what is wrong. Then they always ask for the prognosis and they deserve more than the few words they often get. Materials and Methods A clearer picture of the implications for relatives of patients with bronchial carcinoma was sought by studying 230 consecutively diagnosed cases. After looking at the surgical results, attention was directed to 200 patients whose disease was not resected. They were seen at least once a month. When death occurred, each case history was supplemented by questioning the nursing staff and house physician or general practitioner. Finally, the nearest relative was visited in his own home, where the subject of the illness and the death was exhausted. Some of the topics which were investigated head the sections which follow.
Results Diagnosis
It is unlikely that anyone not suffering from bronchial carcinoma was included in the study. Of those not treated surgically, 90% were dead in a year and 100% in
Answering the Relatives of Lung Cancer Patients
26 months. There was histological confirmation these and in all 30 surgically treated patients.
of carcinoma
389
in 57 (28.5%)
of
Surgically treated patients
Of 30 surgically treated patients, one died postoperatively of pulmonary embolism and another died 331 days later of diverticulitis. One emigrated 2 years after operation and is not included in the surgical successes. Five years after operation, all 13 available survivors (5.6% of 230) were examined. One hysterical man, who had put himself to bed, regretted the operation. The others uniformly approved of their operation and awarded themselves an average of 8.7 ‘marks out of 10’ for the quality of their lives, 10 marks representing their previous life in health. Four were very dyspnoeic but gave themselves an average of 7.25 ‘marks out of 10’. Seven were very active and four were at work or fit for it. Non-surgically
treated patients
Two hundred patients were not treated surgically. Twelve who had refused surgery died sooner (average survival 165 days after first consultation) than 81 patients who were technically inoperable (214 days) or 52 patients who were medically unfit for operation (216 days). Eighty-two gatients (41%) emphatically had no pain at any time. Forty-seven patients (23.5%) neither needed nor received any kind of treatment; 19 of these (9.5%) weakened and ‘went to sleep’ in what might be regarded as an acceptable death. The viewpoint of the closest relative. Two relatives of the 200 non-surgically treated patients refused to be interviewed. Seven patients had no relatives. One hundred and ninety-one responded, often warmly. One hundred and forty-nine (78%) said that the illness had not been as bad as they had anticipated. Thirty-eight (20%) accepted the course of the illness as more or less what they had expected, sometimes after previous experience of cancer. Only four found the illness worse’ than expected, each because of pain. One hundred and forty-eight (76%) of relatives were satisfied with the medical management of the illness. The main comments from those who were dissatisfied (24%) were related to pain relief (ten), delayed diagnosis (seven), home nursing (six) and the possibility of providing a more suitable room at home or in hospital (three). Precipitate death. Fifty-five per cent of deaths occurred within 4 months of the first consultation and for 57 relatives (28.5%) the death was unexpected. Fifty-four deaths spontaneously were described with the exact words ‘sudden’ or ‘so quick’. Objectively this was correct, for the occurrence of the death was almost immediate for 21 patients, 16 dying primarily because they had a carcinoma and five of causes which were not obviously related, e.g. a myocardial infarct, a haematemesis from a gastric ulcer. Haemoptysis. Ten patients (5%) experienced massive, immediately fatal
390
J. Spencer Jones
haemoptyses. Seven were ambulant and three had a very severe, dry herald cough. One had ‘. . . been laughing her head off, at the moment she bled and three were found in the lavatory. Three additional patients were admitted to hospital with haemoptyses of 100-500 ml and all died 2-5 days after treatment with diamorphine mixtures. Dependence of 56 patients
Interest in the burden for relatives and nurses arose as the study progressed. This was why only 56 consecutive cases could be scrutinized. ‘Dependence’ meant inability to get to the WC or commode with aid from one person. The chance of being ‘dependent’ for less than a day before death was one in ten. Home nursing was encouraged but, as with the complete series of 200, one-half of the patients died in hospital. After becoming dependent, the life expectation was approximately the same at home as in hospital: two-thirds survived for less than 10 days and only one-tenth for over a month. Discussion The value of surgery for bronchial carcinoma has been questioned (Anonymous 1979) but without it, death for each patient is inescapable. Belcher’s (1983) analysis of large series has demonstrated 5-year survivals of 25.5-26.8%. Of 30 surgically treated East Kent patients, 13 have survived and seven are very active. Relatives should be left in no doubt that the patient must see a thoracic surgeon if there is any possibility of successful resection. In 1971 Durrant et al. estimated that 80% of all bronchial carcinoma patients had inoperable disease. The situation may be worse than this. In East Kent 81.7% were inoperable and this figure could have risen to 87% if 12 patients who refused surgical assessment had proved inoperable. Such a large majority calls for carefully -considered management with the earliest possible development of mutual confidence between the patient and his medical advisers. The first step towards this is to develop a way of dealing truthfully with patients’ questions (Jones 1981). Further progress is made if time is found to speak to the nearest relative. All but one of 191 relatives approved of being approached and of being given the diagnosis. The usual response of a woman whose husband has cancer, is to doubt if she has the ability to see the illness through. Although it has been said that less than 4&50% of all cancer patients experience pain of any significance (Twycross 1978), fear of death in the house after a long and painful illness is general. In East Kent, it was found that 41% of patients had no pain at any time and that 23.5% had no need for treatment of any sort. It must unnecessarily undermine the confidence of relatives if they are not given information of this sort. Similarly, telling them that 78% of relatives in an identical position have considered the illness not to be as bad as they feared, provides more of the sort of reassurance which they need. Strangely, it can even provide comfort to be told of the small chance of death from some different condition.
Answering the Relatiues of Lung Cancer Patients
391
A simple sketch of the likely general deterioration in the health of the patient, with loss of weight and strength and ‘a fortnight in bed at the end’ (which is enough for two-thirds of patients) can make the illness sufficiently tangible for inexperienced relatives to contemplate dealing with it. Offers to see the relative if ever they are worried seem never to be abused and the promise of a hospital bed, if prolonged nursing is required, does not waste resources. ‘Dependency’ for over a month occurred in only six out of 56 of our patients and in 7 out of 47 of Malfin (1978). Pain caused ‘a bad death’ for 12.5% of East Kent patients. Mainly for this reason, the course for some patients with bronchial carcinoma remains worrying but this should not mean that every relative has to live in fear during an illness in which twice as many patients need no treatment whatever. Bowling ( 1983) h as reminded us that, ‘. . . it is not that the sick are helped by doctors, doctors by nurses and nurses by families but the other way round’. Relatives are in the front line and need all the encouragement they can get. Acknowledgements The surgical procedures were performed by A. Golebiowski, FRCS and R. R. Burn, FRCS at Preston Hall Hospital in the thoracic surgical unit which was closed on 31 January 1984. References Anonymous (1979) Choice of treatment in operable lung cancer. Br. med. J. I, 970. Belcher, J. R. (1983) Thirty years of surgery for carcinoma of the bronchus. Thorax 38, 428-432. Bowling, A. (1983) The hospitalisation of death. Should more people die at home? J. med. Ethics 9, 158-161. Durrant, K. R., Berry, R. J., Ellis, F. et al. (1971) C om p arison of treatment policies in inoperable bronchial carcinoma. Lancet 1, 715-719. Jones J. S. (1981) Telling the right patient. Br. med. J. 283, 291-292. Mallin, S. (1978) The care of the terminally ill in the home. In: Psychosocial Care of the Dying Patient, pp. 46-49: ed. C. A. Garfield. New York: McGraw-Hill Book Company. Twycross, R. G. (1978) Relief of pain. In: The Management of Terminal Disease, p. 65, ed. C. H. Saunders. London: Edward Arnold.
Chest
(1984) 78, 388
ANSWERING THE RELATIVES OF LUNG CANCER PATIENTS J. SPENCER Royal
Victoria
Hospital,
JONES Folkestone,
CT19
5AN
Summary
Of 230 bronchial carcinoma patients, 30 underwent resection and 13 (5.6%) survived 5 years. Some of the domestic implications of the diagnosis were sought through study of the 200 non-surgically treated patients and by interviews with 191 of their relatives. Seventy-eight per cent of the relatives said that the illness had not been as bad as they had anticipated. Fifty-five per cent of patients died within 4 months of their first examination and 28.5% of relatives were unprepared for the suddenness of the death. Five per cent of patients died of a massive haemoptysis. For two-thirds of a subgroup of 56 patients, inability to get to the lavatory with help from one person, was a herald of death within 10 days. Some findings offered comfort for relatives living with a lung cancer patient: 41% of patients had no pain at all, 23.5% needed no treatment and 9.5% weakened and died very peacefully. Introduction Throughout life, close relatives are the principal comfort of most of us. When we are ill, they want to know what is wrong. Then they always ask for the prognosis and they deserve more than the few words they often get. Materials and Methods A clearer picture of the implications for relatives of patients with bronchial carcinoma was sought by studying 230 consecutively diagnosed cases. After looking at the surgical results, attention was directed to 200 patients whose disease was not resected. They were seen at least once a month. When death occurred, each case history was supplemented by questioning the nursing staff and house physician or general practitioner. Finally, the nearest relative was visited in his own home, where the subject of the illness and the death was exhausted. Some of the topics which were investigated head the sections which follow.
Results Diagnosis
It is unlikely that anyone not suffering from bronchial carcinoma was included in the study. Of those not treated surgically, 90% were dead in a year and 100% in
Answering the Relatives of Lung Cancer Patients
26 months. There was histological confirmation these and in all 30 surgically treated patients.
of carcinoma
389
in 57 (28.5%)
of
Surgically treated patients
Of 30 surgically treated patients, one died postoperatively of pulmonary embolism and another died 331 days later of diverticulitis. One emigrated 2 years after operation and is not included in the surgical successes. Five years after operation, all 13 available survivors (5.6% of 230) were examined. One hysterical man, who had put himself to bed, regretted the operation. The others uniformly approved of their operation and awarded themselves an average of 8.7 ‘marks out of 10’ for the quality of their lives, 10 marks representing their previous life in health. Four were very dyspnoeic but gave themselves an average of 7.25 ‘marks out of 10’. Seven were very active and four were at work or fit for it. Non-surgically
treated patients
Two hundred patients were not treated surgically. Twelve who had refused surgery died sooner (average survival 165 days after first consultation) than 81 patients who were technically inoperable (214 days) or 52 patients who were medically unfit for operation (216 days). Eighty-two gatients (41%) emphatically had no pain at any time. Forty-seven patients (23.5%) neither needed nor received any kind of treatment; 19 of these (9.5%) weakened and ‘went to sleep’ in what might be regarded as an acceptable death. The viewpoint of the closest relative. Two relatives of the 200 non-surgically treated patients refused to be interviewed. Seven patients had no relatives. One hundred and ninety-one responded, often warmly. One hundred and forty-nine (78%) said that the illness had not been as bad as they had anticipated. Thirty-eight (20%) accepted the course of the illness as more or less what they had expected, sometimes after previous experience of cancer. Only four found the illness worse’ than expected, each because of pain. One hundred and forty-eight (76%) of relatives were satisfied with the medical management of the illness. The main comments from those who were dissatisfied (24%) were related to pain relief (ten), delayed diagnosis (seven), home nursing (six) and the possibility of providing a more suitable room at home or in hospital (three). Precipitate death. Fifty-five per cent of deaths occurred within 4 months of the first consultation and for 57 relatives (28.5%) the death was unexpected. Fifty-four deaths spontaneously were described with the exact words ‘sudden’ or ‘so quick’. Objectively this was correct, for the occurrence of the death was almost immediate for 21 patients, 16 dying primarily because they had a carcinoma and five of causes which were not obviously related, e.g. a myocardial infarct, a haematemesis from a gastric ulcer. Haemoptysis. Ten patients (5%) experienced massive, immediately fatal
390
J. Spencer Jones
haemoptyses. Seven were ambulant and three had a very severe, dry herald cough. One had ‘. . . been laughing her head off, at the moment she bled and three were found in the lavatory. Three additional patients were admitted to hospital with haemoptyses of 100-500 ml and all died 2-5 days after treatment with diamorphine mixtures. Dependence of 56 patients
Interest in the burden for relatives and nurses arose as the study progressed. This was why only 56 consecutive cases could be scrutinized. ‘Dependence’ meant inability to get to the WC or commode with aid from one person. The chance of being ‘dependent’ for less than a day before death was one in ten. Home nursing was encouraged but, as with the complete series of 200, one-half of the patients died in hospital. After becoming dependent, the life expectation was approximately the same at home as in hospital: two-thirds survived for less than 10 days and only one-tenth for over a month. Discussion The value of surgery for bronchial carcinoma has been questioned (Anonymous 1979) but without it, death for each patient is inescapable. Belcher’s (1983) analysis of large series has demonstrated 5-year survivals of 25.5-26.8%. Of 30 surgically treated East Kent patients, 13 have survived and seven are very active. Relatives should be left in no doubt that the patient must see a thoracic surgeon if there is any possibility of successful resection. In 1971 Durrant et al. estimated that 80% of all bronchial carcinoma patients had inoperable disease. The situation may be worse than this. In East Kent 81.7% were inoperable and this figure could have risen to 87% if 12 patients who refused surgical assessment had proved inoperable. Such a large majority calls for carefully -considered management with the earliest possible development of mutual confidence between the patient and his medical advisers. The first step towards this is to develop a way of dealing truthfully with patients’ questions (Jones 1981). Further progress is made if time is found to speak to the nearest relative. All but one of 191 relatives approved of being approached and of being given the diagnosis. The usual response of a woman whose husband has cancer, is to doubt if she has the ability to see the illness through. Although it has been said that less than 4&50% of all cancer patients experience pain of any significance (Twycross 1978), fear of death in the house after a long and painful illness is general. In East Kent, it was found that 41% of patients had no pain at any time and that 23.5% had no need for treatment of any sort. It must unnecessarily undermine the confidence of relatives if they are not given information of this sort. Similarly, telling them that 78% of relatives in an identical position have considered the illness not to be as bad as they feared, provides more of the sort of reassurance which they need. Strangely, it can even provide comfort to be told of the small chance of death from some different condition.
Answering the Relatiues of Lung Cancer Patients
391
A simple sketch of the likely general deterioration in the health of the patient, with loss of weight and strength and ‘a fortnight in bed at the end’ (which is enough for two-thirds of patients) can make the illness sufficiently tangible for inexperienced relatives to contemplate dealing with it. Offers to see the relative if ever they are worried seem never to be abused and the promise of a hospital bed, if prolonged nursing is required, does not waste resources. ‘Dependency’ for over a month occurred in only six out of 56 of our patients and in 7 out of 47 of Malfin (1978). Pain caused ‘a bad death’ for 12.5% of East Kent patients. Mainly for this reason, the course for some patients with bronchial carcinoma remains worrying but this should not mean that every relative has to live in fear during an illness in which twice as many patients need no treatment whatever. Bowling ( 1983) h as reminded us that, ‘. . . it is not that the sick are helped by doctors, doctors by nurses and nurses by families but the other way round’. Relatives are in the front line and need all the encouragement they can get. Acknowledgements The surgical procedures were performed by A. Golebiowski, FRCS and R. R. Burn, FRCS at Preston Hall Hospital in the thoracic surgical unit which was closed on 31 January 1984. References Anonymous (1979) Choice of treatment in operable lung cancer. Br. med. J. I, 970. Belcher, J. R. (1983) Thirty years of surgery for carcinoma of the bronchus. Thorax 38, 428-432. Bowling, A. (1983) The hospitalisation of death. Should more people die at home? J. med. Ethics 9, 158-161. Durrant, K. R., Berry, R. J., Ellis, F. et al. (1971) C om p arison of treatment policies in inoperable bronchial carcinoma. Lancet 1, 715-719. Jones J. S. (1981) Telling the right patient. Br. med. J. 283, 291-292. Mallin, S. (1978) The care of the terminally ill in the home. In: Psychosocial Care of the Dying Patient, pp. 46-49: ed. C. A. Garfield. New York: McGraw-Hill Book Company. Twycross, R. G. (1978) Relief of pain. In: The Management of Terminal Disease, p. 65, ed. C. H. Saunders. London: Edward Arnold.