Dilemmas in general practice: The care of the cancer patient

Sot. SC,. Mvll Vol 16. pp 315 10 322. 1982 0277.9536/82/030315-08103.00/O Prmwd m Great Britam Pergamon Press Ltd

DILEMMAS IN GENERAL PRACTICE: THE CARE OF THE CANCER PATIENT

JANE E. ROSSER and PETER MAGUIRE

Department of Psychiatry, University Hospital of South Manchester, West Didsbury, Manchester M20 ELR, England

Abstract-Recent investigations of the care provided for cancer patients in the community have revealed substantial shortcomings, both in the identification of problems and in the help offered to patients and their families. While some explanations have been sought for these omissions, it has generally been assumed that they are due to practitioners’ ignorance of problems encountered by families. Focusing on general practitioners, this paper argues that these deficiencies in care arise not only from ignorance, but also from the conceptual and structural framework within which practitioners operate. Working within such a framework, genera1 practitioners experience considerable dilemmas in decisions about the management and care of cancer patients. This paper argues that explicit acknowledgement of these dilemmas is a necessary prerequisite to any recommendations for improvements in care.

INTRODUCTION

Recent investigations of the care provided for cancer patients in the community have revealed substantial shortcomings, both in the identification of problems and in the help offered to patients and their families Cl]. While some explanations have been sought for these omissions, it has usually been assumed that they are due to practitioners’ ignorance of the problems encountered by families. Hence, much research has documented the problems families experience living with the disease, in the belief that increased awareness will improve the care provided by medical practitioners [2]. Focusing on general practitioners, this paper argues that these deficiencies in care arise not only from ignorance, but also from the conceptual and structural framework within which practitioners operate.

Firstly, general practitioners are trained and operate within the context of western allopathic medicine. The historical development of the ideology and practice of this system of medicine has been explored else- where [3]. In brief, with the increasing focus on hospital and laboratory, medicine has attained credibility through its claim to be an applied physical science. In theory, clear distinctions are made between psyche and soma; between the expert in command of an esoteric body of objective knowledge, and the uninitiated passive recipient of medical care; between the experience of illness and medically defined physical pathology. Within the profession, the high status specialties reflect the perceived ideal-mastery, through intervention, of specific disease entities or pathology within a particular organ of the body. Medical training is geared to this perception of medicine, medical knowledge and the accompanying self-image of medical practitioners.

In reality, however, medical knowledge in many spheres is limited and uneven, the dynamics of physical processes are variably understood, and modes of intervention may precede knowledge of aetiology. Moreover, as is increasingly recognised and explored, the dynamics of illness experience and its relationship to physical pathology are extremely complex [4].

FOCUS on the management of disease categories may be sadly inadequate for the relief of suffering of a specific individual in a particular social setting.

General practitioners, both conceptually and in practice are located at the juncture of medical knowledge of disease, and the experience of illness, misfortune and social disease. They act as mediators between the lay person and specialist, between esoteric clinical practice and its sometimes distressing impact on people’s lives. Trained within a biomedical framework, they share the values and perspectives of specialist practitioners. However, being the first point of contact for most patients, and having an explicit ideology of caring for the ‘whole person’, they are confronted with the social, psychological and moral dimensions of living with a disease and its physical treatment. Academically, and through the experiences of their patients, they are acutely aware of the uncertainties and limitations of the body of knowledge they represent. However, due to the generic nature of their work, they are equally aware of their own limited knowledge of a particular condition relative to the specialists. Finally, their ideological standpoint of caring for the.whole person demands of them, in theory, a particularly sophisticated understanding of their own and their patients’ reactions to disease, illness and misfortune-a sphere traditionally given poor priority in medical theory.

Within the context outlined above, this paper will examine the dilemmas confronting general practitioners in the care of cancer patients [5]. We will focus on the nature of cancer itself, the practitioners’ dual perspective on the medical endeavour and their role, and finally the personal impact of their position in the structure of medical care. We shall argue that these dilemmas mitigate against the provision of comprehensive care and must be taken into account when suggestions are made for improved provision for patients in the community.

THE IMPACT OF CANCER Within the framework of scientific medicine, knowl-

edge is perceived as a means of control, Permitting

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316 JANE E. ROSSER and PETER MAGUIRE

active intervention in gaining mastery over natural processes. The uncertainties in medical knowledge concerning the definition of cancer as a disease or group of diseases, their aetiology, treatment and prognosis, have been well documented [6]. In a medical paradigm that taxonomises diseases as uniform entities irrespective of the individual body or person they afflict, a disease which defies classification, which apparently has no consistent pattern of aetiology and response to treatment, is a fundamental threat to the basic premises of that system. Cancer, therefore, has been described as the ‘standardised nightmare of our society’ [7], for it is a powerful symbol of the inexplicable. It represents the limits of cultural control and scientific knowledge.

Fear of cancer within the lay population is usually attributed to ignorance of the developments in scientific knowledge, and thus the assumption that cancer equals death. People are, therefore, seen as having an ‘inordinately’ pessimistic view, ‘cancerphobia’, an ‘irrational fear’. However, if cancer is seen as symbo- lising not simply death, but the inexplicable, one would expect it to represent a similar, if not greater, threat to members of the medical profession, for it challenges their role as practitioners-to define and control disease. Indeed, the general practitioners’ use of vocabulary in their descriptions of the disease, illustrate this:

“There is no doubt at all that there is some mystique about cancer; it’s special, sinister.. maybe it’s because of the way we handle it.. . patients react better to coronary than cancer, it’s a better prognosis. Myself, deep down, unreasonably, I think the same thing-1 mean emotionally not statistically” (Dr 18).

Another spoke of cancer as having a ‘special mythol- ogy of its own’. He explained this by saying of other chronic and life-threatening diseases:

“Somehow one accepts them as being in theory a treatable medical entity” (Dr 19).

The evocative descriptions of treatment illustrated the emotional impact of this disease. Surgery was described as ‘butchery’, ‘chopping the ruddy thing out’. One particularly pessimistic practitioner called cancer a ‘revolting, horrible condition’, and said

“Unless you’re lucky and get it early, it’s still what I would describe as an undignified race, medicine versus the growth. It’s still a question of whether you can kick it out before it kills the patient. Very unscientific really, isn’t it, chasing round the body” (Dr 21).

Cancer poses a threat both to medicine in general and to the practitioner’s own status. This is evident in their accounts of their role in giving information to cancer patients [S]. Those who seldom or never told their patients the diagnosis frequently explained this in terms of patients’ wishes or inability to cope. How- ever, they also spoke of themselves as ‘taking the coward’s way out’ (Dr 13, being a ‘moral coward’ (Dr 22). They also stated that ‘luckily’, ‘thank God’, ‘fortu- nately’ patients seldom ask. As one practitioner said:

“If we came to the hypothetical question where I might turn to someone and say ‘Is it cancer, Doctor, and if so is it curable or not?’ I don’t think I would really put the doctor in that sort of embarrassing position” (Dr 11, stress added).

Obviously some doctors believed that patients should know their diagnosis. and took this task upon themselves. However, their description of the task was similar:

“I always tell, except sometimes I chicken out; I always at least try to face my patients up to the truth” (Dr 23).

Whe asked explicitly to explain practitioners’ reluctance to openly acknowledge the disease with patients, even when they believe the patient ‘knows’, he said:

“It’s just the traditions we’re brought up in; as medical students we’re taught this by consultants. And also, I think it’s fear on our part. We get very used to appearing to be miracle-producers, curing the pneumonias and curing the ulcers and all the rest of it. It’s very hard to accept that you cannot actually cure something. And if you actually have to go and talk to somebody about your failure to cure them, that is also putting you, yourself, in a different position which is difficult to cope with.. It takes time, and it does burn me up, and I come away exhausted” (Dr 23).

When the practitioners’ views on cancer are considered in detail, it is evident that the impact of the disease stems from its unpredictability. Their views covered a broad spectrum from total pessimism to qualified optimism with careful delineation of the types and sites of cancer, the stage at diagnosis, and features of the individual patient. However, a common theme throughout these accounts was one of uncertainty. Scientific explanations were seen as inadequate to account for the occurrence and development of the disease in individuals.

(i) Uncertainty about aetiology

No practitioner believed that questions of aetiology had yet been satisfactorily answered, and most felt that few advances in understanding the causes of cancer had been made since they entered medical practice. Established association between certain factors, for example smoking and lung cancer, did not provide adequate explanations for the experience of their patients. Thus, they spoke of patients who ‘shouldn’t have’ contracted the disease, ‘don’t deserve it’, to whom ‘fate has been very cruel’. Two practitioners expressed this concern in virtually identical words. Both spoke of a ‘lovely lady’, one with lung cancer, the other with inoperable stomach cancer. Both described how these women had never smoked or drank, and had led ‘abstemious lives’. For both doctors, their patient’s misfortune was inexplicable and unjust: ‘life’s been very hard on her’. This problem of explanation was most commonly expressed when practitioners were asked which aspects of general practice they found most emotionally draining. For example :

“Young people who seem to apparently die unjustifiably, have diseases which they have no justification in getting. They don’t deserve them, and one has to see the agonies and suffering for some time before they die. I think these are the most draining. If someone asks for something, and they get it, I think one is more objective” (Dr 1).

(ii) Uncertainty about treatment

The doubt concerning aetiology obviously intro- duces some uncertainty about the treatments for cancer. The practitioners expressed this through their

Dilemmas in general practice 317

assertion that the ‘real’ treatment or cure will remain elusive until the problem of aetiology is solved:

“The treatment sometimes works and sometimes doesn’t; and you’re just grateful. You don’t know why” (Dr 2). “Of course we get cures, what appear to be cures, patients we’ve followed up over 25 years who have not had recur- rences. So there are cures, no question; but why these cures occur, I don’t know” (Dr 1).

The word ‘cure’, therefore, when applied to cancer is a relative term. The doctors spoke of ‘nearly a cure’ (Dr 3) or ‘possible cure’ (Dr 6):

“If you want to use cure as total elimination of cancer in the body, then your cure figures are going to tumble down”

(Dr 11). “If the patient is alive without symptoms after 5 years, that’s my defintion of cure” (Dr 13).

Six practitioners would not use the word at all; all the others applied it retrospectively to particular individuals, not prospectively to specific types of cancer.

The practitioners’ statements about breast cancer clearly illustrate the disjunction between established medical procedure based on the belief that intervention equals control, and the reality of their experience in caring for patients. They repeatedly asserted that early diagnosis of breast cancer led to more successful treatment, and therefore all patients with breast lumps should be immediately referred to hospital. However, there was doubt as to the effectiveness of this strategy:

“Only then will you be able to get your early stages of cancer. Not that I personally feel it’s ail that important in view of the results we get; but the general attitude is, the earlier you get them the more chance you give them” (Dr 20). “Figures on death from breast cancer are up, despite SO- called earlv diagnosis. despite so-called better treatment” (Dr 21). _ - “Despite the fact that I know that treating it early makes absolutely no difference to the prognosis-it would appear we haven’t made any progress in improving the death rate from breast cancer in the last 20 years, according to the experts! Nevertheless, one’s got to get over to the community as a whole that they must come early with a lump in the breast; because I mean there must be one or two who you will save by getting it early” (Dr 32).

Cancer, therefore, is perceived as a capricious group of diseases. There were only two consistent exceptions to this: skin cancer, and, with more reservations, cer- vical cancer diagnosed at a very early stage. The other cancers are not seen as inevitably fatal, but neither is medicine seen as being in control of their development in-any consistent way. This lack of control was epitomised by one practitioner:

“It’s very difficult for me to decide whether any cancers are cured by any kind of treatment, or whether those that are cured are not very malignant anyway” (Dr 9).

In summary, the impact of cancer stems from its elus- iveness; it challenges the claim of medicine to control disease through intervention based on scientific knowledge. Moreover. for the general practitioner, the body of knowledge upon which their expertise is based is sadly inadequate as an explanatory framework within their daily practice. It cannot account for why a particular individual should contract the dis-

ease, nor can it predict how that individual will re_ spond to treatment. For the patient experiencing the disease, and for the practitioner caring for that patient, these are crucial, unanswerable questions. Against the background of their views on cancer itself, we shah now explore the dilemmas experienced by general practitioners in the management of such patients.

DILEMMAS IN MANAGEMENT

Historical accounts of the development of General Practice have traced the changes in perspective on the medical endeavour, and on the status and role of general practitioners uis-his the hospital based special-. ists [9]. It is generally acknowledged that the rise of hospital medicine and the accompanying perspective on medicine as the diagnosis and management of serious organic pathology, severely damaged the status of general practice. By the time of the introduction of the N.H.S., teaching-hospital based medical schools controlled training, and the standards by which general practice assessed its own status and role clearly reflected the hospital ideology. Thus general practitioners’ status was seen as eroded by their lack of specialist knowledge, their exclusion from the hospitals, and their preoccupation with ‘trivia’ as opposed to ‘real illness’.

However, with the inception of the Royal College of General Practice in the 195Os, a new perspective on the medical endeavour emerged, Biographical Medicine. In theory, such a perspective relegated the hospital from its position of preeminence to that of mere technical function. As Armstrong notes:

“The role of the G.P. had changed to that of ‘final arbiter’ on his patients’ welfare, and in so doing ‘interpreting modifying, translating and sometimes even rejecting the specialist advice’. In effect the hospital was no longer the accepted repository of medical knowledge, rather that knowledge was contained within the act of general practice itself” [lo].

Armstrong argues that while Biographical Medicine appears to be the dominant ideology within the Royal College, its extent within the ‘field’ of general practice is probably more limited. He also argues that one of the inhibiting influences to the acceptance of such an ideology is the continued hospital control of medical socialisation and the concomitant imparting of hospital cognitive structures. In addition, we would argue that such continued control of basic medical edu- cation symbolises the general concensus within the medical profession of the greater status and importance of hospital medicine.

In order to illustrate the dilemmas experienced by general practitioners, this account will focus on these two perspectives on medicine: the application of science to the human body in order to combat disease; and care of the individual by attending to the biography and the subjective experience of the ~uf- ferer. Each encodes not only a view of the medical endeavour, but also a view of the relative role and status of the generalist and specialist. General Practi- tioners operate with both perspectives, and, due to the specific nature of cancer and its physical treatment, often find the two perspectives to be in conflict.

318 JANE E. ROSSER and PETER MAGLJIRE

(i) Scientific hospital medicine

In their general statements about illness, ‘trivia’ versus ‘serious illness’, and definitions of medical progress, the practitioners reflect a scientific perspective on medicine. They focus on the classification of iden- tifiable diseases with consistent patterns of aetiology and treatment. For example:

“Doctors. before 1935, apart from cutting bits out, surgery, literally could do nothing for anybody.. . didn’t do anything for anybody or all; the body did it. There was nothing YOU could do. They may have consoled and sat by bedsides, and waited until the crisis of pneumonia broke, and all this stuff; but they never did anything for anybody as far as the disease was concerned” (Dr 24).

When speaking specifically about cancer and their hopes for the future, the practitioners defined the medical enterprise in a similar way, as in this example :

“I have an unrelenting hope that eventually we will master it. I think everything should be done. If you’re going to write people off, you’re never going to get it right. If you give people as much treatment as possible, be it chemotherapy, radiotherapy, radical mastectomy or whatever- unless one keeps trying combinations you’re never going to get it right, you’re never going to find the answer.. . One has to keep trying. It may be theoretically, trying to look at it in a totally impersonal way, that patients suffer a little bit through over-treatment, over-zealous; but I would rather be over-zealous than sit back and resign myself to the inevitability that in ten years time they’ve got as much chance of being dead whether you do anything or not” (Dr 19).

Within this perspective, the general practitioners share the same conceptual framework as the specialists, respecting their more sophisticated knowledge of this particular set of diseases. They acknowledge, therefore, their role as referral agents, their primary and urgent obligation being to refer patients for treatment of the physical disease:

“My role here is fairly limited; we’re talking about a sPecialist field, and you can only get specialist help in hospital” (Dr 30). “It was the only right thing for the hospital to take over” (Dr 31).

When patients question the necessity of treatment, this deference to specialist knowledge is explicit. For example, both of the following doctors expressed strong doubts about the efficacy of treatment [ll]. However, in this context their role is clear:

“Yes, oh yes, I’ve had that, and quite honestly what I usually say is ‘Well look, I am not the person who’s going to make that decision anyway. We’ll seek a second opinion and see what the doctor who would treat you is going to say’. after all. I’m not the person who’s going to be-the technician am I. I leave it to the technician” (Dr 20). “Again that tends to be out of our province. You refer them, and from then on any treatment is his decision; and as far as I’m concerned, my responsibility is to get them the best possible advice. Having done that, they will decide on treatment, and they will be better able to judge the patient’s reaction than I can. The whole thing comes back to me complete then” (Dr 21).

Acknowledging their own limited command of specialist knowledge, these practitioners lack the professional confidence to openly discuss treatment with

their patients. Even those doctors who had strong doubts about the worth of treatment for particular patients, felt that they did not have the expertise to question it in practice:

“You’ve got to take the expert’s opinion on these things. I don’t know what their statistics are as to the effects of chemotherapy. or the effects of radiation for that matter.. . Who am I to say? I’ve not specialised opinion. I’d hate to say ‘Well, this person shouldn’t have chemotherapy’, because I’d be sticking my neck out, and perhaps denying them something that overall is going to save their life” (Dr 28).

Within such a perspective on medicine the subordinate status of the general practitioner is clear. Their acknowledgement of this is evident in their ex- pressions of dissatisfaction with such a position:

“997; of the care is done by the hospital, and I get left out. I suppose I react by opting out. Because I can’t treat them. I try not to treat them.. You’ve no idea what you’re doing. You’re told to stuff this medicine into this patient; you don’t know what’s going to happen, what to expect, what to do if it goes wrong; you’re just in total ignorance about it” (Dr 7).

Similarly, the role of mediator between specialist and patient is problematic. The following doctor described the problems facing him when his patient is involved in a controlled clinical trial. The difficulties were com- pounded for this particular doctor because he personally believed that all breast cancer patients should be offered chemotherapy:

“I had to explain to her that it was done as a niatter of routine, though I knew it wasn’t; she’s part of a clinical trial. And I have a number of patients on the control sample who aren’t being offered chemotherapy. I have to justify to the experimental patients why they’re having treatment, and to the control why they’re not” (Dr 1).

One doctor’s expression of his subordination to the specialists was reminiscent of patients’ descriptions of their doctors:

“He’s in a different class. You feel the specialists are so busy that you can’t get through; so I never question them” (Dr 9).

Thus, within this perspective, control of the physical disease is of paramount importance. In this respect the oncologist is the final authority on management, and although general practitioners may feel some resentment at their subordinate status, they acknowledge the greater expertise of the hospital-based specialisms.

(ii) Biographical medicine

All the practitioners also stressed the professional norm of Genera1 Practice-the management and care of the whole person. All referred to the inadequacy of medical training as preparation for general practice. They spoke of its hospital orientation, focusing on the treatment of ‘cases’ and diseases, rather than on the care of the afflicted. General practice, they argued, was ‘person-oriented, ‘family-centred’, concerned with the ‘whole man’. From this perspective the patient’s experience is all-important, and the practitioner’s primary obligation is to relieve subjective suffering.


The practitioner has a spectific role, in conjunction with, but not subordinate to that of the specialist.

It is in this context that the practitioners’ own views on cancer and its treatment are significant. As has been shown, the main conclusion of the practitioners is that the disease is unpredictable in its development in individuals, and in its response to physical treatment. If treatment has little impact on patients’ lives, there is unlikely to be any conflict of priorities between treatment of the disease and care for the sick person. However, in the case of cancer, practitioners are aware that the success of treatment cannot be predicted, and that it may severely affect the quality of a person’s life. For example, over 75% of the practitioners expressed some reservations about the use of cytotoxic drugs because of their perceived effects on patients:

“If I had a bellyful of cancer, I don’t think I’d want to be a guinea-pig. They certainly do suffer.. I’m sure a shot of heroin would have been much better. But, as I say, that’s not the right attitude if you’re wanting to treat and cure cancer. But of course, I’m looking at it from the human point of view” (Dr 26). “The hospital pretend that chemotherapy is marvellous, will cure, which I think is just deception, it’s perjury.. The patient’s more important than dubious treatment, or pal- iiation which is in fact what it is. I’m not knocking it, it may extend life, fair enough, but it causes side-effects” (Dr 33).

Similar doubts were expressed about surgery:

“I wouldn’t go through the operation (removing a lung cancer) for the sake of two years life. It’s such a brutal operation, and there’s ‘such pain afterwards, and you’re just existing then. aren’t you” (Dr 22).

Viewing the medical endeavour from the ‘human point of view’, the practitioners questioned the priorities established in the specialist fields:

“I think the people who get the most treatment suffer the most misery. I often feel I wish they wouldn’t do it. The specialist doesn’t see the effect on the patient’s life” (Dr 9). “I don’t share the optimism of the hospital about cancer of the breast. You see, the hospital talk about 5 year survival, but honestly, you should see how some of those poor devils survive the 5 years. Okay, one accepts for research or whatnot, you’ve got to do some of these horrible things; but honestly, the quality of life of some of those poor patients was never worth all that they had to go through. And the family often express this to me afterwards. Although I privately agree with them, I never openly agree with them. I say ‘Well. as doctors, by nature, by calling, we have always to strive for the best, and this, shall we say, satisfies us’. But it doesn’t really satisfy me” (Dr 20). “Cancer of the bronchius. it’s a dreadful condition; treatments of it are so devastating that I honestly feel that with many patients it’s better not to treat them at all.. at a certain stage, at a certain time. a person has had enough. The problem is, when someone has got a skill. they use it even when it’s not justified” (Dr 29).

The expressed doubts as to the aims of the medical profession in this sphere are clearly those of people who are not in direct control of decision-making as to the administration of treatment. It could be argued that being in this position allows them the luxury of reflecting in this way without accepting responsibility for the outcome. Whether this is the case or not, it is clear that such a position is unenviable, given the

uncertainty as to the efficacy of treatment. As general practitioners their primary obligation is to relieve suffering; as members of the medical profession their primary obligation is to combat physical disease and save lives. Thus, all believed that if physical treatment eliminated the disease it should be administered. However, it was only in. retrospect that they could know whether the side-effects of treatment were justified by the outcome:

“There’s nothing good about treatment; treatment for all cancers is horrible. If they’re cured, then obviously the price was worth paying. But if they’re not cured, this has contributed to the misery of their disease, because often they die more quickly than they might have done untreated, or their life is extended by a short span and they’re iller” (Dr 27). “It’s really knocking sense out of them; they’re really des- perately ill with the treatment. One can only hope they’re doing some good, otherwise it’s making life very hard on them if they’re going to die eventually after all this they’ve been through.. One can only hope the end justifies the means, because otherwise they could be carrying on life as Mrs B. is carrying on” (Dr 28).

General practitioners, therefore, perceive the medical endeavour and their role within the structure of medical care from two interrelated perspectives. In the case of cancer these perspectives conflict. Moreover, the conflicts revolve around fundamental moral issues concerning the value of life, which, even if denied by the practitioners, are still present in the lives of their patients.

RESOLVING THE DILEMMAS IN PRACTICE

In practice the practitioners adopt a policy which conforms to the ideal of scientific medicine. Good medicine in practice is interpreted as quick referral to hospital for treatment of the disease. The practitioner’s role then becomes one of ameliorating the problems created in the lives of these patients:

“She’s now an alcoholic; she hasn’t recovered at all, she never will do. I knew she would, but what could you do; she had to have the breast off. If you didn’t take it off, you weren’t coming up to the standard of medicine YOU should be doing. You couldn’t leave her with a cancer of the breast there, could you? But knowing it had to come off, she reacted just as I expected she would. She got a shock she’s not recovered from ten years later, and never will do. The pity of it -IS, lrom the general pomt of view she’s got a jolly good result. In ten years she’s still no sign of recur- rence” (Dr 20).

The following woman suffered severe depression and was finally referred to the psychiatric department at the hospital :

“It all happened so quickly; within a fortnight she’d found a lump and lost her breast. So it all happened terribly quickly, and it was almost as if she’d been raiiroaded through all this.. . It did all happen awfully quickly, perhaps a little too quickly. She didn’t have time to assimilate what was actually happening. This is why I say 1 wasn’t at all surprised she got depressed” (Dr 25).

Despite their own personal reservations, very few practitioners could recall an instance where they had actually taken control of decision-making about treatment. A number stated that where treatment had been

320 JANE E. ROSSER and F%IXR MAGUIRE

administered for some while, and in their view WAS

patently ineffective, they might advise the patient or hospital to stop it. However, only one could recall an incident where he had challenged the hospital in this way :

“To me the hospital kept talking in terms cf cure, and that was a farce-‘She’s doing very well’-and all this. She wasn’t; Christ, the kid was dying, you could see it; she was deteriorating physically apart from anything else. I’d have given her one shot, and if I got a good remission, a good remission, yes, I’d have started thinking seriously about a second course. You know if you don’t get a long remission the first time, you’re running out of luck; and if the second course doesn’t get a remission, you’re wasting your bloody time. What was the point? What were we trying to achieve? I said to them ‘What the hell are YOU playing at? No way will I have anymore part of this; you’re playing games now. Can you stop your research now. and let’s start thinking of P-‘. Up to that time I’d just been working for the hospital” (Dr 2).

Another practitioner had strong doubts about the in- itiation of another course of treatment for a child under his care. However, he described his reluctance to challenge the hospital, and his feelings afterwards of having let the family down. Explaining his acceptance of the final course of treatment. he said:

“In fact, there was no way that D- was going back on another course of treatment, until I persuaded her to have it.. Of course, I accepted his (specialist) judgement. I always regard it as possible to make mistakes. But I should have stuck up for L-, rather than the medical profession. The medical profession, we all stick together. If he says everything will be all right-1 felt emotionally ‘I don’t have any knowledge’; but with commonsense I was sure, I really believed she would be ill. She said ‘All right, if you say so’. I said ‘Okay, great, see you next week’. And then the next day she was so ill” (Dr 35).

When it comes to decision-making, therefore, the practitioners are reluctant to actively question the role of physical treatment. A number of authors discussing both general and other medical practitioners, have argued that within the bio-medical framework active intervention at the level of practice serves to resolve theoretical doubts and uncertainties for practitioners themselves [12]. Considering their position within a medical structure which places primary importance and status on scientific medicine and physical intervention, the practitioners’ choice is under- standable. However, it also has clear implications for the kind of care they feel able to provide for cancer patients. Before concluding the paper with discussion of these implications, one other problematic feature of general practice will be considered: maintaining a balance between professional and personal involvement.

INVOLVEMENT VS SURVIVAL

General Practitioners are unique within the medical profession in that they work within the lay corn-- munity and claim specific concern with the subjective experience of the sufferer within her/his social context. With such an emotionally charged disease such a position may make the practitioner personally vulner- able. Very few practitioners were willing to respond to inquiry about the emotional impact upon themselves

of caring for cancer patients. Most responded by defining their professional role. with only passing reference to their own emotional reaction:

“I don’t get distressed; I’m a professional, that’s my job, and if I got distressed about it I shouldn’t be doing it” (Dr 24). “This is a profession You don’t get emotionally attached to one family.. Medicine is a profession. you can’t be emotionally attached; doing a job properly doesn’t mean that you are emotionally attached, no, no” (Dr 36).

However, 16 doctors elaborated on the problems of maintaining a balance between professional distance and personal involvement when providing care and support for cancer patients. These practitioners stressed the need to keep their own emotions within strict professional limits, while also arguing that genuine emotion is an essential part of good care. The problems arose either from the emotional impact of the situation itself, or from their particular relationship with certain patients. ,For example, Dr 23 described the situation of telling a cancer patient the diagnosis:

“I think you have to be less remote from your patients than most doctors like to be, which means you have to be not afraid to hold their hand while you tell them, and to issue what I call warmth-something you should never do in any other situation for fear of being struck off the regis- ter! But if you’re going to tell somebody something like that, you’ve actually got to be close enough so they feel you’re part of them. I suppose there is a very delicate line between that and going too far in medicine.”

This practitioner described such a consultation as ‘burning me up’, but also argued that genuine empathy was essential; it could not be taught as a technique. Others similarly described the emotional impact of providing care:

“Whilst you are with the patient or family, when the tears come into their eyes, they always come into mine.. I warn my colleagues, you’ve got to learn to switch off; have all the emotion when you’re with them, but once you’re out of the house you must switch OK I think I do. I think I switch off reasonably well. otherwise you just couldn’t carry on. Always I think when you’ve got a family where there is terrific grief either of impending death or a recent death, if you’ve really been involved with them, it’s not easy to switch off completely. It keeps coming back into your mind; but not as acutely as if it was your own flesh and blood” (Dr 38). “It was quite a shock for me; I went home to my wife and said ‘Oh God, I’ve had an awful time in the surgery.. just awful inside me, seeing that kid and knowing what it was.’ It was my problem, not their problem. It upset me a lot at the time” (Dr 8). “You can’t be involved all the time. but you have to allow yourself to be involved to a degree. Sometimes it’s harrow- ing, but without this degree of involvement there is not rhe care” (Dr 39).

In addition to the situation itself, there is the practitioner’s relationship with certain patients stemming from their knowledge of them as other than ‘cancer patients’:

“As a G.P.. when you do know a family well. know them well, you’re more likely to be. if you like. emotionally involved with the family. And you may have known and liked the patient for 20 years. and you can’t just think. well


there goes another patient. You’re involved, while you’re never really involved in hospital, very rarely” (Dr 40).

tions. Being the most accessible representative of

“You notice with G-, I get upset about discussing it. medicine within the community, and having a specific

One gets to know these people, I live amongst them, I’m ideology of caring for the ‘whole person’, the general

friendly with them; and I see them socially, see them in the practitioner witnesses and must work with the impact

street. I get upset about them, yes” (Dr 20). of intervention on the daily lives of sufferers.

Finally, one practitioner graphically described the Comprehensive care demands exploration on many

personal risk involved in losing one’s professional dis- levels of how patients and their families are coping with the disease and its treatment. However, consider-

tance : ing the impact of cancer on the lives of natient and

“If you can’t give them medicine, you can always give them a bit of yourself, the least you can do is give them some of yourself. But there’s no way I’ll ever get as emotionally involved as I did with P- I made a mistake there. I don’t see how I could avoid it. That’s one of the ways I have been self-analytical, because I don’t ever want to get as involved with a patient again. It nearly destroyed me, and I don’t ever want to do it again.. Medicine is a cancer; it eats you up at times” (Dr 2).

This doctor was perceived by the family as providing magnificent care both before and after the patient died.

General Practitioners, therefore, may face a considerable dilemma in maintaining the balance between professional and personal involvement when caring for cancer patients. At one extreme this may be resolved in practice by avoiding any discussion of the patient’s emotional problems, thereby eliminating any risk of personal involvement. However, most are involved in at least some risk-taking, defining particular patients as special, either because of their predica- ment, or their past relationship with them. Of course, this may be a dilemma for all medical practitioners in a variety of contexts. However, it is particularly acute when such an emotionally charged disease is involved, and when the practitioners view their professional role as providing care and support for patient and family.

CONCLUSION

These data were collected in interviews with practitioners who were asked to reflect on their work. The attitudes, conflicts, doubts and contradictions evident in their statements, thereTore, are not necessarily experienced in practice whenever they make a decision to act. Much sociological work has pointed out that people act on the basis of decision rules, habits, and routine in their everyday life, and do not constantly reflect on their actions. However, their behaviour is nevertheless influenced by the conceptual and structural framework within which they operate [13].

We have argued that General Practitioners occupy an unenviable position in the structure of medical care for cancer patients. Through hospital-based training and its accompanying perspective on medicine, they share to a considerable extent the ideology of technical optimism. In common with all medical practitioners. they perceive the disease cancer as both a challenge and a threat. It is a threat both to the credibility of the body of knowledge they represent, and to their perception of their role in combating disease and saving life. However. general practitioners participate in little of the excitement or accompanying high status at the research frontier, and instead shoulder much of the distressing burden of its limita-

family, invkstigation of psycho-social problems carries the risk of discussions about cancer, and of the fallibi- lity of medicine and themselves in this sphere. In referring patients to hospital, and deferring to specialist knowledge, the practitioners acknowledge that their status derives from their membership of the medical profession, and that profession’s esoteric knowledge of physical disease. However, not only is the practitioner’s knowledge of this disease limited due to the generic nature of his work; but also, the body of knowledge which he represents, and through which he claims the trust of his patients, is full of uncertainty and controversy. Discussion of these issues with patients, therefore, presents a personal threat to practitioners themselves. Far from being ignorant of patients’ and families’ problems, many of the practitioners are acutely aware of the possible problems. Thus in explaining their reluctance to investigate, they speak of opening ‘Pandora’s box’, ‘a hornet’s nest’, ‘a can of worms’, or ‘letting the fiend out of the bag’.

In conclusion, the main argument of this paper is that the shortcomings in practitioners’ identification of families in need of help and the care they offer, should not be seen as resulting purely from their ignorance or lack of interest. Neither should suggestions for improving care focus purely on the general practitioners; for what is at issue is the dilemma of an idealised medicine of technical control, and a reality of limited and uneven knowledge. At present, despite the increasing awareness of the limitations of a medical system that focuses on the physical dimensions of illness, a holistic approach to the experience of illness is still perceived as of secondary importance. This is reflected in medical socialisation and training and in the perceived relative status of generalist and speeial- ist. While this is the case, the attempts of general practitioners to provide comprehensive care will remain fraught with problems stemming from their conceptual framework and their position within the structure of medical care.

REFERENCES

1. Maguire G. P. The psychological and social sequelae of mastectomy. In Modern Perspectives in the Psychi- atric Aspects of Surgery (Edited by Howells J. G.). Brunner Mazel, New York, 1976. Comaroff J. and Maguire G. P. Ambiguity and the search for meaning: childhood leukemia in the modern clinical context. Sot. Sci. Med. ISB, 122, 1981.

2. See. for references: Gogan J. L., Malley J. E. and Pos- ter D. J. Treating the pediatric cancer-patient: a review. J. Ped. Psychol. 2, 42, 1977. Lewis F. M. and Bloom J. R. Psychosocial adjustment to breast cancer: a review of selected literature. Int. J. Psychiat. 9, 1. 1978. Miller C. L., Denner P. R. and Richardson V. E. Assisting the psychosocial problems of cancer patients:

322 JANE E. ROSSER and PETER MAGUIRE

a review of current research. Inr. J. Nurs. Stud. 13, 161, 1976. Fielio K. The historiography of scientific medicine: an in;itation to the human sciences. Comp. Stud. Sot. Hisf. 19.262. 1977. Jewson N. D. The disappearance of the sick’ man from medical cosmology. sociology 10. 225, 1976. Waddington I. The role of the hospital in 6. the development of modern medicine: a sociological analysis. Sociology 7, 211, 1973. For example: Eisenberg L. Disease and illness: distinctions between professional and popular ideas of 7. sickness. Cult. Med. Psychiat. 1, 11, 1977. Stacey M. Concepts of health and illness: a working paper on the concepts and their relevance for research. SSRC. 1977. 8. The data presented in this paper were collected as part of an SSRC funded project. The data were collected and analysed by Jane Rosser and Ong Bie Nio. We should like to express our gratitude to Bie Nio, and to all the practitioners who took part in this study. The interviews were semi-structured and recorded on tape. 51 G.Ps were interviewed about particular breast cancer patients; 40 about particular children with leuk- 9. emia. Both groups were also asked general questions about their views on cancer, and their work with 10. cancer patients. Wherever their statements refer to a 11. specific cancer, this is noted in the paper. It is imposs- 12. ible to claim representativeness with such a small group of practitioners. As one aim of the study was to compare patient and practitioner accounts, their selec- tion was determined by the sample of patients in a previous study. Compared to the national average (Health and Personal Social Services Statistics. England, 1978; pub. 1980). there is a slightly higher proportion of practitioners aged 30-39, and 40-49. 13. with a concomitantly lower proportion aged under 30

and 60+. Average list size was htgher with 54”, as opposed to 39’: having 2500+ patients. The proportion of men to women was slightly higher than the national average. 89% were trained in the Brittsh Isles. Only 15 had the MRCGP: these were aged between 40 and 67. Henderson C. and Cannellos G. P. Cancer of the breast; the past decade. New Engl. J. Med. 302, 17. 1980. Doll R. The epidemiology of cancer. Cuncer 45, 2457, 1980. Comaroff J. and Maguire G. P. op. cit. p. 116. 1981. See also, Sontag S. I//ness as Meraphor. Farrar, Straus & Giroux, New York. 1978. 48% stated that they very rarely or never told cancer patrents the dtagnosts. loo/, stated that they frequently told patients. The remainder sometimes told patients. depending on various criteria for giving information. See, for comparison: McIntosh J. Processes of com- munication, information seeking and control associ- ated with cancer: a selective review of the literature. Sot. Sci. Med. 8, 167, 1974. See Ref. f31. Also. Armstrone D. The emancioation of biographical medicine. Sot. .%i. Med. 13A, 1. ‘1979. Ibid. p. 6. See p. 5, and p. 2, respectively. Comaroff J. A bitter pill to swallow: placebo therapy in general practice. Social. Rev. 24, 79. 1976. Davis F. Uncertainty in medical prognosis: clinical and func- tional uncertainty. A. J. S. 66, 41. 1960. Posner T. Magical elements in orthodox medicine: diabetes as a medical thought system. In Health Care and Heakh Knowledge (Edited by Dingwall R., Heath C., Reid M. and Stacey M.), p. 141. Croom Helm. London. 1977. Garfinkel H. Srudies in Ethnomerhodologr. Prentice- Hall. Englewood Cliffs. 1967.

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Dilemmas in general practice: The care of the cancer patient