Radiotherapists and cancer education

Clin. Radiol. (1978) 29,339-342

RADIOTHERAPISTS AND CANCER EDUCATION* R. L. DAVISONt and E. C. EASSON$

t Manchester Regional Committee for Cancer Education, Kinnaird Road, Manchester 20; Christie Hospital, Manchester 20 This paper argues three main points. First, that education has a vital part to play in the train of events that might lead to the cure of more patients with cancer in certain sites. Secondly, evidence is presented to show that the type of education that is needed must be of a special, and carefully devised kind. And, thirdly, it is argued that of all medical specialists involved in cancer treatment radiotherapists are uniquely placed to stimulate and to support cancer education programmes.

The argument that education about cancer is needed arises from the observation that patients treated for cancers o f limited extent in some sites have a significantly better prognosis than those with advanced disease (Table 1), and from the assumption that to treat more patients with clinically 'early' disease in sites such as these is feasible and would increase substantially the number of cures. Though the five-year criterion of 'cure' for all cancers has rightly fallen into disrepute in recent years, it seems to be a satisfactory yardstick for most of the sites shown in Table 1 (see Easson and Russell, 1968). If this argument is accepted, it follows that treatment must be

Effective education, no less than effective therapy, can be prescribed only on the basis o f preliminary observation, examination and diagnosis. Attempts in many countries to answer the question 'Why do cancer patients delay?' have yielded uniform findings. Some patients put off seeing the doctor because they think the symptom is trivial. Others delay for the opposite reason; they believe the symptom to be serious but shun the finality of a diagnosis because of all that the word cancer connotes to them. Of the two groups of delayers 'ignorance' and 'fear' - the latter is probably the more numerous, and its members tend to delay longer. But useful as they are, studies among patients do not by themselves yield enough data upon which to Table 1 - Prognosis. Influence of stage on prognosis. Five base a reliable educational programme. To arrive at a year survival rate (%) clearer understanding o f the reasons why delaying Skin Histology Stage Stage patients behave as they do we must look at the I IV society in which they have been brought up and from which they have acquired the attitudes which affected Skin Squamous cell carcinoma 90 30 Cervix Squamous cell carcinoma 82 3 their behaviour when they noticed a symptom. The Larynx Squamous cell carcinoma 88 20 most recent of a series of periodical surveys of Lip Squamous cell carcinoma 88 19 public knowledge and opinion about cancer in the Bladder Squamous cell carcinoma 70 5 North-Western Region (Knopf, 1974) adduced Tongue Squamous cell carcinoma 60 3 evidence which again was consistent with comparable Breast Polymorphic carcinoma 78 6 Testis Seminoma 80 20 studies elsewhere. Over 60% of respondents believed

falling far short of its potential for cure. How far short it is possible to estimate only crudely but the number of avoidably premature deaths from cancer must run into many tens of thousands. These deaths are therefore not directly attributable to any absence of curative services, but rather to shortcomings o f behaviour on the part of patients or their doctors. To change such behaviour implies education.

Table 2 - Disease thought to kill most people in this country

Disease

Cancer Heart disease Bronchitis Other Don't know n = 756 * Based on a lecture given by R. L. Davison on 21 May 1977 at a weekend course of the Royal College of Radio*Some gave more than one answer. logists, Radiotherapy Section.

% 66.9 17.7 10.6 7.3 3.7 Total 106.2'

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Table 3 - Degree of curability of cancer. Age differences

Cancer

21-39 years

40-59 years

JSO + years

7.2 74.3

10.7 60.3

10.1 54.6

14.1

22.5

28.6

4.4 100.0 n = 249

6.1 0.4 100.0 n = 262

4.9 1.8 100.0 n = 227

(%)

Usually curable Sometimes curable NEVER curable Don't know No i n f o r m a t i o n Total

(%)

(%)

the cancers to head the list of killing diseases (Table 2). Furthermore, substantial minorities believed cancer to be seldom or never cured (Table 3). Were this all, it would be perfectly understandable if a patient who held such views took no action as long as the symptom was not excessively troublesome. Why submit oneself now to the unpleasantness of admission to hospital, to what one thinks of as mutilating surgery or debilitating radiotherapy, if One does not believe the treatment is going to affect the outcome? But other findings from this study suggest that for some patients the fear of what they believe to be inevitably premature death is compounded by feelings of social stigma and of shame which are none the less real for being ill-defined. Too many people associated cancer with uncleanliness and with immorality (Table 4) for this to be ignored in planning an educational programme, especially since many of the

Table 4 - A g r e e i n g w i t h s u g g e s t e d c a u s e s o f c a n c e r

Cause

Agree

Disagree

Don't know

%

Uncleanliness Infection Heredity Immorality Smoking Not yet known

24 7 31 27 71 79

62 86 53 54 18 10

14 7 16 19 11 11

100 100 100 100 100 100

n = 756

studies among patients mentioned above (see tor instance Aitken-Swan and Paterson, 1955; Peck, 1972) confirm that more patients with cancer than one might at first suspect harbour feelings of moral retribution and hence of guilt in connection with their disease. But it is not only mistaken ideas about cancer that may contribute to delay by the patient. Another study in the North-Western Region (Grant and Davison, 1975) revealed the existence in the minds of many people of a mistrust of and disaffec-

RADIOLOGY

tion with general practitioners. In an analysis of questions asked by members of the public after talks to 324 groups in the region, one group in every four expressed critical comments about general practitioners. Doctors have not time for one nowadays; they put everything down to neurosis; they don't take symptoms seriously. Such comments - largely unjustified in relation to doctors' handling of the patient with potentially serious symptoms - imply that some patients, already reluctant to face up to a diagnosis of cancer, may well use the anticipated attitude of the GP as an excuse for not consulting him at once. Education in this context therefore goes far beyond publicising warning symptoms, for this may carry the risk of transferring people from one delaying group, 'ignorance', to the other, 'fear', and of exacerbating rather than reducing patient delay. Even publicising facts about the nature of cancer and the good prognosis for some early forms is unlikely to solve the problem. To change for the better the general feelings of hopelessness and nastiness that the word cancer generates and to help those individuals to whom the odium of a diagnosis of malignancy is even more intolerable than the prospect of the treatment, demands an educational programme the content and the execution of which must be devised with great care. How this is done in Britain has been described elsewhere (Wakefield, 1962; Davison and Wakefield, 1967, Davison, 1973). Suffice to say here that the lamentably few centres devoted to this work on a local or regional basis (in South-east Wales by Tenovus; in the North-Western Region by the Manchester Regional Committee for Cancer Education; in Oxford by the Cancer Information Association; and in Northern Ireland by the Ulster Cancer Foundation) all adopt the same general methods. Convinced by evidence which has accrued over may years from mass-communications research that the use of the mass media of broadcasting and printed matter alone is inappropriate and largely ineffective in changing deeply rooted attitudes to cancer, they rely mainly on personal methods of education. Trained speakers visit groups of all kinds in the community, and encourage questions and general discussion after a brief introductory talk. Questions and discussion are seen as more important than the preceding talk, for it is here that individuals can express their personal doubts and have any needless anxieties allayed. But attempts to foster more matter-of-fact attitudes in the general public will be severely handicapped if they are not supported by professionals both on and off duty. Many nurses (Davison, 1965) and general practitioners and medical students (Easson, 1967) have been shown to share the public's

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unduly pessimistic views about the prognosis for some highly curable cancers, and it is legitimate to ask what kind of impression they are likely to convey in the informal conversations about cancer in which we all become involved from time to time. Easson's findings also raise the question of the effects of unduly pessimistic medical attitudes on the diagnostic awareness of some general practitioners. Are some doctors subconsciously more reluctant than they should be to face up to the possibility of a diagnosis of malignancy, perhaps in patients they have known for many years? Or on the other hand is it possible that some unfortunate patients can seek medical advice too soon, so that the symptom which alarms the patient i s not yet florid enough to alert the doctor? Questions such as these suggest that more vigorous and extensive professional education should go hand in hand with any attempt to educate the general public about cancer. Tile evidence presented so far supports the idea that even if public and professional education did no more than relieve people of a needless burden of anxiety it would be worthwhile. Research in the Manchester r'egion suggests that such changes have taken place. For instance, the proportion believing cancer can sometimes be cured rose from 30% in 1953 to about 60% in 1973. There is also evidence of marked increases in the proportions of patients registered with disease of limited extent in some sites (cervix uteri and larynx are examples) though a causal relationship with the educational programme cannot be claimed with certainty. Whether or not more patients are cured as a result of consulting the doctor sooner is, of course, a test of the medical rather than of the educational services. But if a case has been made that given a better-educated public a greater saving of life is possible or even an extension of useful active life in patients who otherwise would have died sooner - then education is not merely desirable; it is imperative. Imperative though it might be, disappointingly little is being done. The Regional Cancer Organisations ought to be well in the forefront, but apart from the North-Western RCO which inherited an existing educational programme, they are not. The plea that financial stringency prevents them is understandable, but it raises the question of priorities. For instance, how much money is expended on palliating symptoms in patients who could have been treated with curative intent had they been treated sooner? Or in treating patients whose cancer might have been prevented had they been persuaded to behave differently? The general health education services do what they can, but among their many other commitments

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341

general health education officers tend to pay attention - and that often inadequately - only to cervical cytology, smoking, and to exhorting women to examine their own breasts for lumps. The underlying need for changing attitudes to cancer if people are to adopt these practices is sometimes ignored or not fully appreciated. But perhaps the greatest obstacles in the way of more concentration on cancer by the general health education services might turn out to be feelings on the part of health education personnel that they themselves do not known enough about cancer; and in some cases to negative attitudes to cancer and cancer education on the part of their medical superiors. Arguments that public education about cancer will increase existing fears, and consequently either exacerbate the problems of delay or overburden general practitioners with unjustifiably anxious patients, are still being advanced, even though this has long been shown not to be a consequence of properly-conducted educational programmes (Wakefield and Davison, 1958). The volume and quality of public and professional education needed to tackle this very real problem is therefore quite inadequate. What more might be done? A clue as to where the most effective initiative might come from lies in the observation that those cancer education programmes which have been closely associated with major radiotherapy centres have run well, whereas those without such an affiliation have run into difficulties or have foundered completely. The prosperity - in terms of its workload of the Manchester Regional Committee for Cancer Education, for instance, owes much to the firm backing of the Christie Hospital. The advantages of this to the educational programme have been at least threefold. The idea of public education, and the content of the educational message has been the more readily accepted by doctors in other branches of medicine, such as community health and general practice, whose support is vital: the hospital itself contains a rich source of radiotherapists trained and willing to give lectures to the public: and it provides an all-important resource of data and up-to-date information about cancer. How important this latter facility is may be judged from Grant and Davison's study (1975) where of over 3600 questions asked by members of the public, 591 were different! This is therefore a specialised branch of health education, demanding not only all the skills of trained health educators but also that wide general knowledge of cancer than can be acquired and maintained only through close and constant association with a major treatment centre. The ideal would be for each regional radiotherapy centre to initiate an associated programme of public and professional

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education to be conducted by academically trained health educators. This would set the educational work where it properly belongs as part of the whole spectrum of cancer care and control. The fact that this may not be economically feasible under present allocations of revenue does not mean nothing might be done. Though the present work of the cancer education organisations is firmly based on preliminary and on-going research and evaluation, there are still gaps in our knowledge that need exploration, and the possibility of attracting research grants should be borne in mind. As a workable, though possibly less ideal alternative, it could be that some area medical officers and health education officers would be persuaded to extend their activities in this field, given that they were provided with the encouragement and day-to-day support they would need. It is not suggested that all radiotherapists could or should offer themselves as lecturers, though for those who have the ability, the training and the taste for it this is a valuable service to the community; nor that they themselves should administer educational programmes. But it is suggested that radiotherapists are uniquely placed to initiate and support such programmes. Their association with centralised services means that they have access to clinical and other data to feed educational work and monitor possible results; and because they treat many of those cancers for which earlier diagnosis is feasible and which respond well to early treatment, they have particular reason for fostering a greater willingness on the part of patients to seek medical advice promptly. Moreover, because unlike most other specialists radiotherapists are occupied nearly exclusively with malignant disease and its treatment it would be proper to accept the wider description of oncologist. However this term permits -- even if it does not definitively des-

cribe -- an interest in the whole spectrum o f cancer prevention, early diagnosis, treatment, and care. Education is an indispensable prerequisite to the first two of these aspects o f oncology, and is a component of all. The alternative to providing more, and more vigorous, public and professional education is to continue seeing appreciable numbers of patients whose cancer might have been avoided, or whose prognosis has been compromised by delay. REFERENCES Aitken-Swan, J. & Paterson, R. (1955). The cancer patient: delay in seeking advice. British Medical Journal, 1,623625. Davison, R. L. (1965). Opinion of nurses on cancer, its treatment and curability. British Journal o f Preventive and Social Medicine. 19, 24-29. Davison, R. L. (1973). Professional and public education. Chapter in Cancer o f the Uterine Cervix, Ed. Easson. W. B. Saunders, London. Davison, R. L. & Wakefield, J. (1967). Chapter in Public Education About Cancer: a Technical Report. International Union Against Cancer, Geneva. Easson, E. C. (1967). Cancer and the problem of pessimism. Ca - Cancer Journal for Physicians, 17, 7-9. Easson, E. C. & Russel, M. H. (1968). The Curability o f Cancer in Various Sites. Pitman Medical, London. Grant, A. S. & Davison, R. L. (1975). Questions behind the answers: what people really want to know about cancer. International Journal o f Health Education, 18, 109-113. Knopf, Andrea (1974). Changes in Opinion After Seven Years o f Public Education in Lancaster. Manchester Regional Committee for Cancer Education, Manchester. Peck, Arthur (1972). Emotional reactions to having cancer. American Journal o f Roentgenology, 114, 591-599. Wakefield, John (1962). Cancer and Public Education. Pitman Medical, London. Wakefield, J. & Davison, R. L. (1958). An answer to some criticisms of cancer education: a survey among general practitioners. British Medical Journal, 2, 96-97.