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Patient and physician delay in cancer diagnosis: Medical aspects
J. &on. Dis. 1963, Vol. 16, pp. 419-426. Pergamon Press Ltd. Printed in Great Britain
PATIENT AND PHYSICIAN
DELAY IN CANCER
DIAGNOSIS : MEDICAL ASPECTS HENRYB. MAKOVER, M.D.* Department
of Preventive
and Environmental Medicine, Albert Yeshiva University, New York (Received 11 January
Einstein
College of Medicine,
1963)
on the part of patient or physician in seeking to diagnose and treat illness is quite properly a concern of the health professions. The basis for this concern is the assumption that the earlier disease is discovered, diagnosed and treated, the better the prognosis. This view has been widely accepted fur years. F%ARSE and CROCKER[l], for example, in 1944, discussing the consequences to the patient of not seeking medical advice for self-acknowledged disease emphasized that in many conditions susceptible to cure in the initial stage, failure to obtain early treatment could result in chronic disease often irreversible in nature. Even though this assumption is far from being universalIy valid, it is sufficiently applicable to engage the attention of those interested in preventive medicine. Moreover, the application of ameliorative or palliative measures to reduce pain, anxiety and disability is of importance whether or not the prognosis is favorably affected by early treatment. Another assumption underlying a discussion of delay in seeking medical care is that diagnosis and treatment require the services of a professionally trained person, usually the physician, to determine the presence or absence of disease, its nature, course, and therapy. This assumption, too, is not universally valid, for there are undeniably many minor illnesses, the common cold for one, that often are properly diagnosed by the patient or by a layman, such as a parent, whose course under self treatment is about the same as it would be were professional care obtained. Relief from symptoms in such instances can be had from home remedies; and, barring complicatio,ns or sequelae, the self-limiting nature of the illness makes deIay The purist may maintain that all in seeking medical care largely inconsequential. symptoms representing a departure from normal well-being be reported to the physician, but such an ideal state would not be attainable, even if desirable, under present conditions. Nevertheless, the general rule that disease be detected early places the prime responsibility first upon the patient who must present himself to the physician, and, secondarily, upon the physician who, once consulted, should be obligated to move promptly, to examine thoroughly, to diagnose early, and to institute proper therapy. Except for that minority who, though symptom-free, are DELAY
*Professor
of Preventive
and Environmental
Medicine. 419
420
HENRY B. MAKOVER
included in mass screening programs, apply to cancer detection clinics, or seek routine periodic checkups, it is the patient who must first determine the presence and the severity of symptoms and who must judge the need for medical care. Initially, therefore, the patient-to-be must perceive a change in his usual health status. Then he must consider it serious enough to seek medical consultation. Perception of symptoms varies considerably among individuals and the question of ‘seriousness’ is a value judgment, dependent upon a plethora of individual characteristics. Moreover, the insidious biological onset of disease may, in many conditions, be below the patient’s threshold of awareness. These considerations must be kept in mind when an attempt to define delay in the medical context is undertaken. Consequently, from which point do1 we begin to ‘clock’ the period of delay? Physician delay has a more easily defined point of origin. Since, with exceptions noted, his responsibility begins with the patient’s first visit, the time elapsed between the awareness of the problem and his making a diagnosis and initiating therapy can be accurately measured. Nevertheless, allowances, even here, must be made for that period of time in which the disease process is below the threshold of discovery by current diagnostic methods. As a general rule, the more severe and persistent the symptoms are that brought the patient to the physician, the more likelihood there is that a diagnosis will be made; but there are many exceptions to this rule. Since the meeting of patient and physician is a natural starting point, delay on the part of the physician can be said to occur only when he has failed to take an action that can and should be taken. The foregoing refers, of course, to the situation in which the patient has sought medical care and has succeeded in seeing a physician. Even this may be precluded by organizational defects that might prevent the patient from obtaining medical care because of lack of personnel and facilities or because of inability to pay. Though delay of this sort is not that of the individual physician, the organization of medical care is, in large part, the responsibility of the public health professions and organized medicine and thus cannot be removed from consideration. The foregoing discussion briefly touches upon some, but by no means all of the problems involved in defining delay in treating illness. It suggests that the problem of delay may be divided into patient delay and physician delay for separate consideration. In both instances, however, there appear to be both avoidable and unavoidable delay, although the line of demarcation is obscured by a number of variables. As a starting point, delay cannot be properly termed avoidable by the patient if, during the biological onset of the disease, he is not aware of symptoms that indicate a departure from health. Symptoms that suggest minor illnesses commonly self-treated must also for pragmatic reasons be included under unavoidable delay. Failure to seek medical care for persistent symptoms which denote an undoubted departure from health, or those that are severe enough to incapacitate the individual to some degree, could properly be called avoidable patient delay, granting that medical care is reasonably available. Once the patient has sought his doctor’s advice, physician delay must be called avoidable whenever diagnosis and therapy are prolonged beyond that which can be reasonably expected from current standards of medical practice. This determination cannot be made precisely, but neither need it be arbitrary [2].
Patient and Physician Delay in Cancer Diagnosis: Medical Aspects
421
The foregoing would indicate that medical interest in the problem of delay should take two directions; one, towards earlier detection of a symptomatic disease, thus attempting to shorten the period of unavoidable delay and, two, towards understanding the physical, sociological, psychological and medical causes promoting avoidable delay. It is this latter problem, specifically, in regard to delay in the diagnosis and treatment of cancer, with which this presentation is concerned. The sociological aspects will be dealt with in the presentation to follow. As far as possible, the medical aspects shall be stressed; but, since the dividing lines between the various facets of the problem are, by necessity, not sharply demarcated, it is probable that there will be a good deal of overlap. Judged by the literature, the problem of patient and physician delay in diagnosing cancer seems to have been singled out for special emphasis from the problem of delay in seeking medical care in general. Although delay in seeking medical care has been discussed in papers dealing with the economics and organization of medical care, there are relatively few papers addressed specifically to this subject except in this broader context. In their review of the literature relating to delay in diagnosing and treating cancer, KUTNER, MAKOVERand OPPENHEIM[3] list 103 publications dealing specifically with delay in cancer, and even this list is not exhaustive. The basis for this emphasis, very likely, has a twofold origin. One has been explicitly stated many times because it underlies the goal of our current therapy of cancer: to detect it early and to eradicate it surgically, radiologically or chemically before local or distant metastases have occurred.* The validity of this concept is borne out by studies like those of GRISWOLD, CUTLERand EISENBERG[4] who studied 5-yr survivals over a 17-yr period, showing that early diagnosis and treatment favorably affects the prognosis, with notable exceptions such as cancer of the breast and lung. Thus, this reason alone provides a strong motive to understand and to prevent delays in finding cancer. Nevertheless, cancer is not the only disease that can be favorably influenced by prompt treatment, though its dreaded implications, perhaps, invoke greater interest. Tuberculosis, syphilis, chronic non-specific pulmonary disease, and some forms of heart disease, can be cured or favorably influenced by prompt treatment. Yet the literature dealing specifically with factors causing delay in diagnosing and treating these diseases is comparatively scanty. This suggests another reason for the growing literature on the subject, one that is more implicit than explicit. The fact that cancer has been singled out for so much attention implies that delay in this respect is, at least, of a different nature or order than delay in seeking medical care in general. If this is so, an understanding of these supposed differences could tell us something about delay in diagnosing cancer and, by comparison, more about delay in seeking medical care in general. The hypothesis that delay in diagnosing cancer is no diEerent from delay in seeking medical care was advanced by GOLDSEN [5] and constitutes a null hypothesis in a study just completed by KUTNER,OPPENHEIMand myself, the data This will be alluded to, in part, later in this of which are now being analyzed. In any case, if delay in the case of cancer is different, our approach to discussion. health education and medical education should incorporate this knowledge. If small number of neoplasms susceptible to primary prevention should be me&ioned for the sake of CompIeteness,but are excluded by the emphasis on tberapeutci goals.
*The relatively
422
HENRY B. MAKOVER
there is no difference, then the problem belongs within the realm of medical care in general. The implication, socially, financially, and medically, would be quite different. Patient delay and failure of physicians to recognize cancer were discussed as early as 1911 by WAINWRIGHT[6]. Frequency of delay was reported in 1912 by the Pennsylvania Commission on Cancer [7], in 1915 by GIBSON[S], in 1919 by FARR[9] and by SIMMONSand DALANDin 1920 [lo] and again in 1924 [ll]. It was the study of PACK and GALLO [12] in 1938, however, that initiated the modern approach to the problem. On the basis of questions put to 1000 patients at Memorial Hospital in New York and the Landrum Tumor Clinic of Paterson General Hospital in New Jersey, they concluded that 44.3 per cent of the group delayed seeking medical advice beyond a 3-month period after onset of symptoms but were not delayed by their physicians, whereas 17 per cent promptly sought medical advice but were delayed by their doctors. In 18 per cent, both patients and physicians delayed beyond the period established as the criterion. Patient delay was defined as failure to seek medical advice within three months of onset of symptoms. Physician delay was defined as failure either to reach a diagnosis or to make proper referral within one month of the first visit. PACKand GALLO’Spaper was followed by a number of other studies 113-181, in which similar criteria were used, with roughly comparable results. In all instances, the same time periods were used to establish delay, and all patients included in the groups studied had cancer. Though the results of these studies are reasonably uniform in establishing the frequency of patient and physician delay, they must be accepted guardedly because of the methodology used. The definition of delay was arbitrarily chosen. Information was elicited retrospectively, relying on the memory of diagnosed cancer patients. There were no controls in the form of patients without cancer. And, except for one paper [18], dealing with pelvic cancer alone, there was no attempt to segregate cancer by site. Moreover, ‘onset of symptoms’ is very difficult to define. If an individual suffering from indigestion for a number of years is later found to have a gastric carcinoma, at what point do we begin to measure delay? At what point does a chronic ‘cigarette’ cough become the initial symptom of a carcinoma of the lung found years later? Until more rigid standards based upon the natural history of the disease can be established, statements about delay on the part of the patient will remain very crude approximations. On the other hand, physician delay need not be established by selecting arbitrary time periods. By examining the medical records (if obtainable*), it should be possible to determine for specific neoplasms at specific sites whether a diagnosis could have been made promptly and, if not, with what frequency delay has occurred. Obviously, there is going to be a difference between the time necessary to make a diagnosis when presented with a large, accessible tumor, as compared to determining the existence or the nature of a small nodule in the prostate gland. If a diagnosis of basal cell carcinoma of the skin is not made in less than 48 hours, physician delay has occurred, whereas a diagnosis of carcinoma of the pancreas may be impossible to make within a month’s duration. *Obtaining records for study outside of hospitals or clinics is extremely difficult and has limited such studies in the private practice of medicine.
Patient
and Physician
Delay in Cancer
Diagnosis:
Medical
Aspects
423
It would seem more pertinent, from a medical point of view, to deline delay in specific terms based upon known pathogenesis than to accept measurement of delay based upon broad and arbitrary definitions of time. To some extent, the issue of delay has been somewhat sharpened by a group of studies [5, 19-231 that attempt to measure the actual duration of delay from onset to diagnosis. Some of these studies were confined to similar neoplasms, thus specifically relating delay to type and site of the neoplasm [15, 211. There were rather wide ranges in delay found in various studies, but a correlation between delay and remoteness of site was shown. A number of studies on duration of physician delay have also been published. Greater detail about all the studies alluded to can be obtained from the review paper cited previously. In spite of these reservations, the investigations do indicate, albeit approximately, that there is a rather high frequency of delayers among patients who have cancer. In comparison with earlier surveys, more recent studies, like that of ROBBINSand his associates [17], demonstrating a reduction in duration of delay, indicate a trend toward prompter action. This trend may reflect, among other reasons, better health education, more precise methods of diagnosis, greater availability of medical care, increased ability to pay for care, and more optimism about effectiveness of treatment. There is also evidence that the decrease in delay has resulted in more favorable survival rates of many neoplastic diseases, though by no means all of them. The causes of patient delay are varied and complex, and involve socioeconomic, behavioral and psychological factors that properly belong in the presentation to follow. There is, however, one facet of patient delay in cancer deserving mention here. This is the aforementioned assumption that patient delay in diagnosing and treating cancer may be different than delay in seeking medical care for other conditions. In a 4-yr study by KUTNER,OPPENHEIMand myself, an attempt was made to investigate this question. A preliminary report by KUTNERand GORDAN[24] has been published touching on this issue. The study involved the use of an extensive questioanaire administered in the homes of a group of 808 respondents in New York City, drawn by area probability sampling. Two dependent variables were selected: delay among respondents reporting an array of general medical symptoms including those of cancer, and delay among those reporting the recent occurrence of symptoms similar to, or identical with, the ‘seven danger signals’ of cancer. Delay in seeking medical care for symptoms was derived empirically from reported behavior. Among the findings, there are indications that there are indeed differences in the patterns of delay in respect to cancer symptoms as compared to general symptoms. Tentatively reported, there seemed to be significantly more delay in seeking care for ‘danger signals’ than for general medical symptoms. Moreover, although delay in seeking medical care is a function of decreasing socioeconomic status, this relationship is more pronounced in the case of cancer symptoms. Finally, education, which seems to bear a slight negative relationship to delay in caring for general medical symptoms, is quite strikingly related to delay in seeking care for symptoms of cancer, the greatest delay being clearly associated with minimal educational attainment. Further investigation of these points is necessary and is being carried out, but there are indications that the implicit assumption that the presence of cancer
424
HENRY B. MAKOVER
symptoms initiates some unique patterns of seeking medical care is probably warranted. If so, the nature of this difference should be further explored and should be of interest to health educators, to physicians, to public health departments, and to all who are involved in the problem of controlling cancer. The nature and causes of physician delay have not been studied as intensively as patient delay, even though the frequency and duration of such delay is simpler to establish. Those who have attempted to survey physicians with respect to medical practice will attest to the fact that great difficulties are faced. The pressure of time, the reluctance to produce patients’ records for inspection, the sensitivity to possible criticism are, among others, the reasons why studies of private medical practice are difficult to design and carry out. From the studies that have been done, the chief reasons for delay seem to be: failure to examine, failure to diagnose, temporizing and incorrect advice, medical attitudes reflecting a high threshold of suspicion or basic pessimism towards the disease, and economic factors associated with some of the above. More precise studies are necessary because there are indications that, whereas delay by the patient has decreased somewhat over the years, physician delay may have remained about the same. This could mean that the delay is at an irreducible minimum or that it has received insufficient attention. The latter is a safer assumption. Although much remains to be investigated in respect to physician delay, it is possible to describe some of the underlying factors contributing to it. Failure to examine thoroughly may, in specific instances, be the result of poor training or of incompetence, although it is unlikely this could be a major reason contributing to delay in the overall picture. In spite of inevitable inadequacies, our systems of medical education and graduate training are conceded to be good ones, perhaps the best in the world today. The problem of cancer is faced by the student and resident throughout his educational career, and early diagnosis and proper treatment are stressed. Moreover, in the medical school and hospital, cancer is seen at the point where action takes place and delay, if it has occurred, most likely has preceded the admission of the patient. In fact, it is in this setting that consequences from neglect and delay are most apparent to the student and the resident. It is also generally true that prompt measures are encouraged in clinic and bedside teaching by most of the clinicians associated with a teaching hospital. Why then, among those trained in classroom and clinic to forestall consequences of delay, should delay occur when they enter the private practice of medicine? To consider this question, attention should be directed towards the effects of practice upon the habits of the physician. Prompt and accurate diagnosis depends upon good history taking, upon thorough examination, and upon discriminating use of specialists, X-rays and laboratories. A good history and physical examination is a time-consuming procedure, and confronts the physician with a familiar economic dilemma. If he is to allot sufhcient time to work up each patient thoroughly, then he has too little time left to see enough patients to provide hi with a desirable income. If, on the other hand, he raises his fees accordingly, he often prices himself out of the general market. If, in addition, he uses specialist services, X-rays and laboratory services, the cumulative charges discourage the patient or so burden him with costs that his ability to afford care is reduced and
Patient
and Physician
Delay in Cancer
Diagnosis:
Medical
Aspects
425
this discourages him from continuing. In much of private practice today, history taking has become a lost art, and even the physical examination is often curtailed or spread over severa visits in order to keep the appointment system moving. These economic pressures of practice contribute not only to delay but to failure in diagnosis and may also contribute to medical shopping, still one more factor which increases delay. Temporizing, where the watchword is “Let’s watch it for a while”, may follow naturally from inadequate examination and failure to diagnose, but may also reflect an attitude of pessimism, fear, or despair on the part of the physician. From his vantage point, he is aware of some of the dismal statistics of survival in some neoplastic diseases, and his temporizing may reflect his wish that the lesion in question will be benign or go away. If he has had personal experiences with cancer in his family, his fear and pessimism may be heightened. Evidence that these factors exist among doctors is rather commonplace wherever physicians meet informally to chat and ‘talk shop’. In some instances, prompt action on the part of the physician is warranted by the findings in his office, but confirmation usually depends upon a rather extensive and costly series of additional tests. The patient often prefers to have tests done in the hospital, so as to utilize his insurance and minimize the cost and, also, to save the time of visits to an array of specialists and laboratories. Since ‘most service policies will not pay for hospitalization for diagnosis only, the physician is faced with the moral problem of either abusing the provisions of the policies by falsifying the reasons for hospitalization or refusing the patient’s request. Delay may ensue or, as a consequence, the patient may go elsewhere, again slowing the diagnostic process. The costs of diagnostic procedures such as G.I. series, barium enemas, bronchoscopy, esophagoscopy, etc., are expensive when performed in private practice and may encourage a ‘wait and see’ attitude or discourage the patient from further examinations altogether. These existing factors in private fee-for-service practice are somewhat selectively affecting the middle-income groups more than the indigent or wealthy classes. There is reason to believe, from recent studies, that group practice combined with comprehensive health insurance can overcome many of these diiIiculties by concentrating specialist and laboratory services within a single unit, thus reducing the cost, the need for hospitalization, and the delay due to multiple referral visits. There is a great likelihood that both patient and physician delay can be reduced in part by changes in the organization and payment of medical care.
SUMMARY
Delay in the diagnosis and treatment of cancer is a medical problem because of the salutary effect of prompt therapy of neoplastic diseases on the life and well-being of the patient. Delay occurs on the part of both patient and physician for a variety of reasons peculiar to each. The factors causing delay have been investigated to some extent, but there is need for more precise study. There is tentative evidence that cancer may present a somewhat special case of delay as compared to delay in other conditions. Further investigation of this problem is Finally, in addition to individual characteristics of patients or continuing.
HENRY B. MAKOVER
426
physicians causing delay, there are broader aspects related to the organization of medical care that exert measurable effects upon the occurrence of delay.
REFERENCES 1.
2. 3. 4. 5. 6. I. 8. 9. 10. 11. 12.
PEARSE, I. H. and CROCKER, L. H.: The Peckhanz Experiment. A Study in the Living Structure of Society, Allen & Unwin, London and New York, 1944. MAKOVER,H. B. : The quality of medical care, Amer. J. publ. Hlth 41, 824, 1951. KUTNER, B., MAKOVER,H. B. and OPPENHEIM, A.: Delay in the diagnosis and treatment of cancer: a critical analysis of the literature, J. chron. Dis. 7,95, 1958. GRISWOLD, M. H., CUTLER, S. J. and EISENBERG, H.: Improvement in cancer survival rates, New Engl. J. Med. 254, 1062, 1956. GOLDSEN, R. K.: Factors Related to Delay in Seelcing Diagnosis for the Danger Signals of Cancer. Social Science Research Center. Cornell Universitv. Ithaca. N.Y.. 1953. %AINWR&T, .I. M.: The reduction of cancer mortality, N.Y..St. .I. Med. 94: 1165, 1911. COMMISSIONON CANCER: Report of the Commission on Cancer. Penn. med. .I. 15, 529, 1911-12. GIBSON, C. L.: Cancer surgery, Amer. J. Surg. 29,374, 1915. FARR, C. E. : Delay in the treatment of cancer, Amer. J. med. Sci. 157,34, 1919. SIMMONS, C. C. and DALA~, E. M.: Caacer: factors entering into the delay in its surgical treatment, Boston med. surg. J. 183, 298, 1920. SIMMONS,C. C. and DALAND, E. M.: Cancer: delay in surgical treatment, Boston med. surg. J. 190, 15, 1924. PACK, G. T. and ~GALI.O,J. S. : The culpability for delay in the treatment of cancer, Amer. J. Cancer 33,443,
1938.
13.
ANDERSON,D. P.: The cancer problem from the standpoint of the practising physician in the small community, Minn. Med. 32, 65. 1949. 14. DELAWTER, D. E.: Culpability for the delay in the management of cancer, Med. Ann. D.C. 17, 342, 1948.
LEACH, J. E. and ROBBINS,G. F.: Delay in the diagnosis of cancer. J. Amer. med. ASS. 135, 5, 1947. 16. ROBBINS,G. F.. MACDONALD,M. C. and PACK, G. T. : Delay in the diagnosis and treatment of physicians with cancer, Cancer 6, 624, 1953. 17. ROBBINS,G. F., CONTE, A. J., LEACH, J. E. and MACDONALD,M. C.: Delay in diagnosis and treatment of cancer, J. Amer. med. Ass. 143, 346, 1950. 18. HOWSON, .I. Y.: The procedures and results of the Philadelphia Committee for the Study of Pelvic Cancer, Wis. med. J. 49, 215, 1950. 19. AITKEN-SWAN,J. and PATERSON,R.: The cancer patient: delay in seeking advice, Brit. med. J. 1, 623, 1955. 20. GRAY, D. B. and WARD, G. E.: Delay in diagnosis of carcinoma of the stomach, Amer. 15.
J. Cancer 83, 524, 1952.
21. 22. 23. 24.
SHEDDEN,W. M.: Carcinoma of the rectum and sigmoid. Amer. J. Surg. 44, 481. 1939. STEARNS,H. C. : Discussion of DIDDLE, A. W.: Genital cancer among women: factors affecting its control in an urban population, Amer. J. Obstet. Gynec. 59, 1373, 1950. TAYJ_OR,H. S.: Factors Associated with Culpability or Non-&lpability in Delaying Medical Care for Cancer. Thesis. G. W. Brown School of Social Work. Washington University, 1946. KUTNER. B. and GORDAN,G.: Seeking care for cancer, J. Hlth hum. Behav. 2, 171, 1961.
PATIENT AND PHYSICIAN
DELAY IN CANCER
DIAGNOSIS : MEDICAL ASPECTS HENRYB. MAKOVER, M.D.* Department
of Preventive
and Environmental Medicine, Albert Yeshiva University, New York (Received 11 January
Einstein
College of Medicine,
1963)
on the part of patient or physician in seeking to diagnose and treat illness is quite properly a concern of the health professions. The basis for this concern is the assumption that the earlier disease is discovered, diagnosed and treated, the better the prognosis. This view has been widely accepted fur years. F%ARSE and CROCKER[l], for example, in 1944, discussing the consequences to the patient of not seeking medical advice for self-acknowledged disease emphasized that in many conditions susceptible to cure in the initial stage, failure to obtain early treatment could result in chronic disease often irreversible in nature. Even though this assumption is far from being universalIy valid, it is sufficiently applicable to engage the attention of those interested in preventive medicine. Moreover, the application of ameliorative or palliative measures to reduce pain, anxiety and disability is of importance whether or not the prognosis is favorably affected by early treatment. Another assumption underlying a discussion of delay in seeking medical care is that diagnosis and treatment require the services of a professionally trained person, usually the physician, to determine the presence or absence of disease, its nature, course, and therapy. This assumption, too, is not universally valid, for there are undeniably many minor illnesses, the common cold for one, that often are properly diagnosed by the patient or by a layman, such as a parent, whose course under self treatment is about the same as it would be were professional care obtained. Relief from symptoms in such instances can be had from home remedies; and, barring complicatio,ns or sequelae, the self-limiting nature of the illness makes deIay The purist may maintain that all in seeking medical care largely inconsequential. symptoms representing a departure from normal well-being be reported to the physician, but such an ideal state would not be attainable, even if desirable, under present conditions. Nevertheless, the general rule that disease be detected early places the prime responsibility first upon the patient who must present himself to the physician, and, secondarily, upon the physician who, once consulted, should be obligated to move promptly, to examine thoroughly, to diagnose early, and to institute proper therapy. Except for that minority who, though symptom-free, are DELAY
*Professor
of Preventive
and Environmental
Medicine. 419
420
HENRY B. MAKOVER
included in mass screening programs, apply to cancer detection clinics, or seek routine periodic checkups, it is the patient who must first determine the presence and the severity of symptoms and who must judge the need for medical care. Initially, therefore, the patient-to-be must perceive a change in his usual health status. Then he must consider it serious enough to seek medical consultation. Perception of symptoms varies considerably among individuals and the question of ‘seriousness’ is a value judgment, dependent upon a plethora of individual characteristics. Moreover, the insidious biological onset of disease may, in many conditions, be below the patient’s threshold of awareness. These considerations must be kept in mind when an attempt to define delay in the medical context is undertaken. Consequently, from which point do1 we begin to ‘clock’ the period of delay? Physician delay has a more easily defined point of origin. Since, with exceptions noted, his responsibility begins with the patient’s first visit, the time elapsed between the awareness of the problem and his making a diagnosis and initiating therapy can be accurately measured. Nevertheless, allowances, even here, must be made for that period of time in which the disease process is below the threshold of discovery by current diagnostic methods. As a general rule, the more severe and persistent the symptoms are that brought the patient to the physician, the more likelihood there is that a diagnosis will be made; but there are many exceptions to this rule. Since the meeting of patient and physician is a natural starting point, delay on the part of the physician can be said to occur only when he has failed to take an action that can and should be taken. The foregoing refers, of course, to the situation in which the patient has sought medical care and has succeeded in seeing a physician. Even this may be precluded by organizational defects that might prevent the patient from obtaining medical care because of lack of personnel and facilities or because of inability to pay. Though delay of this sort is not that of the individual physician, the organization of medical care is, in large part, the responsibility of the public health professions and organized medicine and thus cannot be removed from consideration. The foregoing discussion briefly touches upon some, but by no means all of the problems involved in defining delay in treating illness. It suggests that the problem of delay may be divided into patient delay and physician delay for separate consideration. In both instances, however, there appear to be both avoidable and unavoidable delay, although the line of demarcation is obscured by a number of variables. As a starting point, delay cannot be properly termed avoidable by the patient if, during the biological onset of the disease, he is not aware of symptoms that indicate a departure from health. Symptoms that suggest minor illnesses commonly self-treated must also for pragmatic reasons be included under unavoidable delay. Failure to seek medical care for persistent symptoms which denote an undoubted departure from health, or those that are severe enough to incapacitate the individual to some degree, could properly be called avoidable patient delay, granting that medical care is reasonably available. Once the patient has sought his doctor’s advice, physician delay must be called avoidable whenever diagnosis and therapy are prolonged beyond that which can be reasonably expected from current standards of medical practice. This determination cannot be made precisely, but neither need it be arbitrary [2].
Patient and Physician Delay in Cancer Diagnosis: Medical Aspects
421
The foregoing would indicate that medical interest in the problem of delay should take two directions; one, towards earlier detection of a symptomatic disease, thus attempting to shorten the period of unavoidable delay and, two, towards understanding the physical, sociological, psychological and medical causes promoting avoidable delay. It is this latter problem, specifically, in regard to delay in the diagnosis and treatment of cancer, with which this presentation is concerned. The sociological aspects will be dealt with in the presentation to follow. As far as possible, the medical aspects shall be stressed; but, since the dividing lines between the various facets of the problem are, by necessity, not sharply demarcated, it is probable that there will be a good deal of overlap. Judged by the literature, the problem of patient and physician delay in diagnosing cancer seems to have been singled out for special emphasis from the problem of delay in seeking medical care in general. Although delay in seeking medical care has been discussed in papers dealing with the economics and organization of medical care, there are relatively few papers addressed specifically to this subject except in this broader context. In their review of the literature relating to delay in diagnosing and treating cancer, KUTNER, MAKOVERand OPPENHEIM[3] list 103 publications dealing specifically with delay in cancer, and even this list is not exhaustive. The basis for this emphasis, very likely, has a twofold origin. One has been explicitly stated many times because it underlies the goal of our current therapy of cancer: to detect it early and to eradicate it surgically, radiologically or chemically before local or distant metastases have occurred.* The validity of this concept is borne out by studies like those of GRISWOLD, CUTLERand EISENBERG[4] who studied 5-yr survivals over a 17-yr period, showing that early diagnosis and treatment favorably affects the prognosis, with notable exceptions such as cancer of the breast and lung. Thus, this reason alone provides a strong motive to understand and to prevent delays in finding cancer. Nevertheless, cancer is not the only disease that can be favorably influenced by prompt treatment, though its dreaded implications, perhaps, invoke greater interest. Tuberculosis, syphilis, chronic non-specific pulmonary disease, and some forms of heart disease, can be cured or favorably influenced by prompt treatment. Yet the literature dealing specifically with factors causing delay in diagnosing and treating these diseases is comparatively scanty. This suggests another reason for the growing literature on the subject, one that is more implicit than explicit. The fact that cancer has been singled out for so much attention implies that delay in this respect is, at least, of a different nature or order than delay in seeking medical care in general. If this is so, an understanding of these supposed differences could tell us something about delay in diagnosing cancer and, by comparison, more about delay in seeking medical care in general. The hypothesis that delay in diagnosing cancer is no diEerent from delay in seeking medical care was advanced by GOLDSEN [5] and constitutes a null hypothesis in a study just completed by KUTNER,OPPENHEIMand myself, the data This will be alluded to, in part, later in this of which are now being analyzed. In any case, if delay in the case of cancer is different, our approach to discussion. health education and medical education should incorporate this knowledge. If small number of neoplasms susceptible to primary prevention should be me&ioned for the sake of CompIeteness,but are excluded by the emphasis on tberapeutci goals.
*The relatively
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HENRY B. MAKOVER
there is no difference, then the problem belongs within the realm of medical care in general. The implication, socially, financially, and medically, would be quite different. Patient delay and failure of physicians to recognize cancer were discussed as early as 1911 by WAINWRIGHT[6]. Frequency of delay was reported in 1912 by the Pennsylvania Commission on Cancer [7], in 1915 by GIBSON[S], in 1919 by FARR[9] and by SIMMONSand DALANDin 1920 [lo] and again in 1924 [ll]. It was the study of PACK and GALLO [12] in 1938, however, that initiated the modern approach to the problem. On the basis of questions put to 1000 patients at Memorial Hospital in New York and the Landrum Tumor Clinic of Paterson General Hospital in New Jersey, they concluded that 44.3 per cent of the group delayed seeking medical advice beyond a 3-month period after onset of symptoms but were not delayed by their physicians, whereas 17 per cent promptly sought medical advice but were delayed by their doctors. In 18 per cent, both patients and physicians delayed beyond the period established as the criterion. Patient delay was defined as failure to seek medical advice within three months of onset of symptoms. Physician delay was defined as failure either to reach a diagnosis or to make proper referral within one month of the first visit. PACKand GALLO’Spaper was followed by a number of other studies 113-181, in which similar criteria were used, with roughly comparable results. In all instances, the same time periods were used to establish delay, and all patients included in the groups studied had cancer. Though the results of these studies are reasonably uniform in establishing the frequency of patient and physician delay, they must be accepted guardedly because of the methodology used. The definition of delay was arbitrarily chosen. Information was elicited retrospectively, relying on the memory of diagnosed cancer patients. There were no controls in the form of patients without cancer. And, except for one paper [18], dealing with pelvic cancer alone, there was no attempt to segregate cancer by site. Moreover, ‘onset of symptoms’ is very difficult to define. If an individual suffering from indigestion for a number of years is later found to have a gastric carcinoma, at what point do we begin to measure delay? At what point does a chronic ‘cigarette’ cough become the initial symptom of a carcinoma of the lung found years later? Until more rigid standards based upon the natural history of the disease can be established, statements about delay on the part of the patient will remain very crude approximations. On the other hand, physician delay need not be established by selecting arbitrary time periods. By examining the medical records (if obtainable*), it should be possible to determine for specific neoplasms at specific sites whether a diagnosis could have been made promptly and, if not, with what frequency delay has occurred. Obviously, there is going to be a difference between the time necessary to make a diagnosis when presented with a large, accessible tumor, as compared to determining the existence or the nature of a small nodule in the prostate gland. If a diagnosis of basal cell carcinoma of the skin is not made in less than 48 hours, physician delay has occurred, whereas a diagnosis of carcinoma of the pancreas may be impossible to make within a month’s duration. *Obtaining records for study outside of hospitals or clinics is extremely difficult and has limited such studies in the private practice of medicine.
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It would seem more pertinent, from a medical point of view, to deline delay in specific terms based upon known pathogenesis than to accept measurement of delay based upon broad and arbitrary definitions of time. To some extent, the issue of delay has been somewhat sharpened by a group of studies [5, 19-231 that attempt to measure the actual duration of delay from onset to diagnosis. Some of these studies were confined to similar neoplasms, thus specifically relating delay to type and site of the neoplasm [15, 211. There were rather wide ranges in delay found in various studies, but a correlation between delay and remoteness of site was shown. A number of studies on duration of physician delay have also been published. Greater detail about all the studies alluded to can be obtained from the review paper cited previously. In spite of these reservations, the investigations do indicate, albeit approximately, that there is a rather high frequency of delayers among patients who have cancer. In comparison with earlier surveys, more recent studies, like that of ROBBINSand his associates [17], demonstrating a reduction in duration of delay, indicate a trend toward prompter action. This trend may reflect, among other reasons, better health education, more precise methods of diagnosis, greater availability of medical care, increased ability to pay for care, and more optimism about effectiveness of treatment. There is also evidence that the decrease in delay has resulted in more favorable survival rates of many neoplastic diseases, though by no means all of them. The causes of patient delay are varied and complex, and involve socioeconomic, behavioral and psychological factors that properly belong in the presentation to follow. There is, however, one facet of patient delay in cancer deserving mention here. This is the aforementioned assumption that patient delay in diagnosing and treating cancer may be different than delay in seeking medical care for other conditions. In a 4-yr study by KUTNER,OPPENHEIMand myself, an attempt was made to investigate this question. A preliminary report by KUTNERand GORDAN[24] has been published touching on this issue. The study involved the use of an extensive questioanaire administered in the homes of a group of 808 respondents in New York City, drawn by area probability sampling. Two dependent variables were selected: delay among respondents reporting an array of general medical symptoms including those of cancer, and delay among those reporting the recent occurrence of symptoms similar to, or identical with, the ‘seven danger signals’ of cancer. Delay in seeking medical care for symptoms was derived empirically from reported behavior. Among the findings, there are indications that there are indeed differences in the patterns of delay in respect to cancer symptoms as compared to general symptoms. Tentatively reported, there seemed to be significantly more delay in seeking care for ‘danger signals’ than for general medical symptoms. Moreover, although delay in seeking medical care is a function of decreasing socioeconomic status, this relationship is more pronounced in the case of cancer symptoms. Finally, education, which seems to bear a slight negative relationship to delay in caring for general medical symptoms, is quite strikingly related to delay in seeking care for symptoms of cancer, the greatest delay being clearly associated with minimal educational attainment. Further investigation of these points is necessary and is being carried out, but there are indications that the implicit assumption that the presence of cancer
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symptoms initiates some unique patterns of seeking medical care is probably warranted. If so, the nature of this difference should be further explored and should be of interest to health educators, to physicians, to public health departments, and to all who are involved in the problem of controlling cancer. The nature and causes of physician delay have not been studied as intensively as patient delay, even though the frequency and duration of such delay is simpler to establish. Those who have attempted to survey physicians with respect to medical practice will attest to the fact that great difficulties are faced. The pressure of time, the reluctance to produce patients’ records for inspection, the sensitivity to possible criticism are, among others, the reasons why studies of private medical practice are difficult to design and carry out. From the studies that have been done, the chief reasons for delay seem to be: failure to examine, failure to diagnose, temporizing and incorrect advice, medical attitudes reflecting a high threshold of suspicion or basic pessimism towards the disease, and economic factors associated with some of the above. More precise studies are necessary because there are indications that, whereas delay by the patient has decreased somewhat over the years, physician delay may have remained about the same. This could mean that the delay is at an irreducible minimum or that it has received insufficient attention. The latter is a safer assumption. Although much remains to be investigated in respect to physician delay, it is possible to describe some of the underlying factors contributing to it. Failure to examine thoroughly may, in specific instances, be the result of poor training or of incompetence, although it is unlikely this could be a major reason contributing to delay in the overall picture. In spite of inevitable inadequacies, our systems of medical education and graduate training are conceded to be good ones, perhaps the best in the world today. The problem of cancer is faced by the student and resident throughout his educational career, and early diagnosis and proper treatment are stressed. Moreover, in the medical school and hospital, cancer is seen at the point where action takes place and delay, if it has occurred, most likely has preceded the admission of the patient. In fact, it is in this setting that consequences from neglect and delay are most apparent to the student and the resident. It is also generally true that prompt measures are encouraged in clinic and bedside teaching by most of the clinicians associated with a teaching hospital. Why then, among those trained in classroom and clinic to forestall consequences of delay, should delay occur when they enter the private practice of medicine? To consider this question, attention should be directed towards the effects of practice upon the habits of the physician. Prompt and accurate diagnosis depends upon good history taking, upon thorough examination, and upon discriminating use of specialists, X-rays and laboratories. A good history and physical examination is a time-consuming procedure, and confronts the physician with a familiar economic dilemma. If he is to allot sufhcient time to work up each patient thoroughly, then he has too little time left to see enough patients to provide hi with a desirable income. If, on the other hand, he raises his fees accordingly, he often prices himself out of the general market. If, in addition, he uses specialist services, X-rays and laboratory services, the cumulative charges discourage the patient or so burden him with costs that his ability to afford care is reduced and
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this discourages him from continuing. In much of private practice today, history taking has become a lost art, and even the physical examination is often curtailed or spread over severa visits in order to keep the appointment system moving. These economic pressures of practice contribute not only to delay but to failure in diagnosis and may also contribute to medical shopping, still one more factor which increases delay. Temporizing, where the watchword is “Let’s watch it for a while”, may follow naturally from inadequate examination and failure to diagnose, but may also reflect an attitude of pessimism, fear, or despair on the part of the physician. From his vantage point, he is aware of some of the dismal statistics of survival in some neoplastic diseases, and his temporizing may reflect his wish that the lesion in question will be benign or go away. If he has had personal experiences with cancer in his family, his fear and pessimism may be heightened. Evidence that these factors exist among doctors is rather commonplace wherever physicians meet informally to chat and ‘talk shop’. In some instances, prompt action on the part of the physician is warranted by the findings in his office, but confirmation usually depends upon a rather extensive and costly series of additional tests. The patient often prefers to have tests done in the hospital, so as to utilize his insurance and minimize the cost and, also, to save the time of visits to an array of specialists and laboratories. Since ‘most service policies will not pay for hospitalization for diagnosis only, the physician is faced with the moral problem of either abusing the provisions of the policies by falsifying the reasons for hospitalization or refusing the patient’s request. Delay may ensue or, as a consequence, the patient may go elsewhere, again slowing the diagnostic process. The costs of diagnostic procedures such as G.I. series, barium enemas, bronchoscopy, esophagoscopy, etc., are expensive when performed in private practice and may encourage a ‘wait and see’ attitude or discourage the patient from further examinations altogether. These existing factors in private fee-for-service practice are somewhat selectively affecting the middle-income groups more than the indigent or wealthy classes. There is reason to believe, from recent studies, that group practice combined with comprehensive health insurance can overcome many of these diiIiculties by concentrating specialist and laboratory services within a single unit, thus reducing the cost, the need for hospitalization, and the delay due to multiple referral visits. There is a great likelihood that both patient and physician delay can be reduced in part by changes in the organization and payment of medical care.
SUMMARY
Delay in the diagnosis and treatment of cancer is a medical problem because of the salutary effect of prompt therapy of neoplastic diseases on the life and well-being of the patient. Delay occurs on the part of both patient and physician for a variety of reasons peculiar to each. The factors causing delay have been investigated to some extent, but there is need for more precise study. There is tentative evidence that cancer may present a somewhat special case of delay as compared to delay in other conditions. Further investigation of this problem is Finally, in addition to individual characteristics of patients or continuing.
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physicians causing delay, there are broader aspects related to the organization of medical care that exert measurable effects upon the occurrence of delay.
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PEARSE, I. H. and CROCKER, L. H.: The Peckhanz Experiment. A Study in the Living Structure of Society, Allen & Unwin, London and New York, 1944. MAKOVER,H. B. : The quality of medical care, Amer. J. publ. Hlth 41, 824, 1951. KUTNER, B., MAKOVER,H. B. and OPPENHEIM, A.: Delay in the diagnosis and treatment of cancer: a critical analysis of the literature, J. chron. Dis. 7,95, 1958. GRISWOLD, M. H., CUTLER, S. J. and EISENBERG, H.: Improvement in cancer survival rates, New Engl. J. Med. 254, 1062, 1956. GOLDSEN, R. K.: Factors Related to Delay in Seelcing Diagnosis for the Danger Signals of Cancer. Social Science Research Center. Cornell Universitv. Ithaca. N.Y.. 1953. %AINWR&T, .I. M.: The reduction of cancer mortality, N.Y..St. .I. Med. 94: 1165, 1911. COMMISSIONON CANCER: Report of the Commission on Cancer. Penn. med. .I. 15, 529, 1911-12. GIBSON, C. L.: Cancer surgery, Amer. J. Surg. 29,374, 1915. FARR, C. E. : Delay in the treatment of cancer, Amer. J. med. Sci. 157,34, 1919. SIMMONS, C. C. and DALA~, E. M.: Caacer: factors entering into the delay in its surgical treatment, Boston med. surg. J. 183, 298, 1920. SIMMONS,C. C. and DALAND, E. M.: Cancer: delay in surgical treatment, Boston med. surg. J. 190, 15, 1924. PACK, G. T. and ~GALI.O,J. S. : The culpability for delay in the treatment of cancer, Amer. J. Cancer 33,443,
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