The patient consults you because he wants your advice about his symptoms, and if you adopt the therapeutic approach to history-taking and physical examination, you keep the therapeutic implication of each symptom and sign in the front of your mind. This certainly does not mean that you treat each symptom and sign with a specific remedy. Quite the contrary, the treatment of symptoms without a search for their cause can be extremely dangerous, as epitomised by the patient whose anaemia is treated with iron until it becomes evident that its cause is a carcinoma of the colon. All the findings mould your view of the severity of the disease and hence determine how far you are prepared to go in treatment.
Responsibility for the advice which he gives lies squarely on the shoulders of the clinician, and each decision should be able to withstand the scrutiny of his peers. There is almost always more than one way in which the patient can be treated, and even when only one line of therapy is available, there is always the alternative of doing nothing. The nature and extent of the disease and its risks and complications are one weight in the cerebral scales. This weight is modified by the physical and mental condition of the patient. On the other pan of the scales come the risks and complications of the treatment under consideration.
The trained and experienced doctor puts himself, or his nearest and dearest, in the patient’s position, and asks himself what he would do if he were advising himself or his family. He gives the same advice to the patient. No other advice is acceptable; no other is justifiable. Patients are delighted to hear that this is the basis of your advice. As in the case of investigations, the criterion for going ahead is whether your conscience is clear, and whether you feel that you would have no difficulty in defending your action to your peers. William Evans said that no patient should be the worse for seeing a doctor, and this minimum requirement is far from being met.
When a doctor weighs the pros and cons of what advice to give to Mrs. Jones, although he takes into account all that he can discover about her and her disease, he is not literally weighing things up and acting on the final figure. Often the decision is not difficult at all. If she has anaemia due to malabsorption of iron, for which no cause has been found, the doctor knows that untreated she will deteriorate or even die and that if iron is prescribed she will get better. There is of course a risk in taking iron tablets. There is a risk in taking anything, if it is only the risk of having to regard oneself as a patient, a person who is not healthy. But the dangers of taking iron are infinitesimal compared with the risks and disadvantages of doing nothing, and any sane person would agree on what to do. The risks of treatment vary from barely worth considering to considerable, and this risk must be weighed against the risk of doing nothing. The more sensitive the balance, the more it is affected by tiny differences between the two pans. If the balance is crude, a kilogram or two of difference is necessary to make the scales come down on one side or the other; if it is sensitive, a milligram will be enough.
The doctor’s cerebral weighing machine may be good, bad or indifferent. Its sensitivity depends on common-sense, which probably cannot be learned, information about the patient, which depends on technique and diligence, and on knowledge of disease, which may be improved by study.
The doctor has to make up his mind about the diagnosis and the treatment by “weighing up” many factors which are not actually weighable. His conclusion is not one an engineer would make, but rather a collage of fragments which he arranges to make a picture which seems to him to suit the situation best. Many doctors are not aware of the unscientific nature of their decisions.
Very often the decision is so obvious that it is hardly necessary to consider it as weighing up; it is going on throughout the history-taking and the examination. In these circumstances, little or no judgement is required. At other times the contents of the pans have to be scrutinised.
The general public does not realise that medicine is an “art,” like cooking. Decades of “breakthroughs,” “wonder drugs” and television programmes showing white-coated miracle workers in their space fiction laboratories have produced a distorted picture. This, and the certainty with which doctors express their opinions in the media, have given the population the feeling that the subject is like physics, and that only a few problems remain to be solved. After all, if you can manipulate an unmanned space craft on the moon from earth, surely you can tell whether or not a man has a lesion in his midbrain.
The emphasis on positive health and routine check-ups, has served to foster the illusion that provided you catch it early, you can put it right. Early diagnosis sometimes facilitates a cure, but for ischaemic heart disease or neoplasms or neurological diseases or the common cold, namely most of the diseases which are important, it does not make a great deal of difference.
This is not a book about medical ethics, which is a thorny, intensely personal and ever-changing subject. However, the question of a doctor’s attitude to death is germane to advice-giving, and without going into questions of belief or strongly held feelings about whether or not it is “right” to take this or that action, I would like to put what I think of as the contra-statistical attitude.
“Threescore years and ten” are now the average expectation of life, and each year this figure is pushed slightly higher, not because the old are living very much longer, but because the young are not dying in such large numbers, and thus a higher proportion of people reach old age. Nevertheless, “In the midst of life we are in death.”
Most people die suddenly as a result of accident or disease, and sudden death is no respecter of prognosis. Neither is exceptional longevity. In the individual patient, the odds are irrelevant. A certain therapy may be effective in one patient in four, or in a hundred or even in a thousand; but if it cures the patient, both of you will be pleased with its efficacy. Conversely, it is of little satisfaction to the patient or his doctor to know that the particular complication which has developed is rare. For the patient it was 100 per cent. Whilst one bases one’s operational philosophy on probabilities and analysis of the outcome in other patients, one has constantly to bear in mind that outcome too has a bell-shaped distribution, that the standard deviation may be larger than the mean, and that the patient under consideration may be outside three standard deviations from the mean, in either direction. This means that the individual patient may die very quickly or he may have a normal expectation of life.
When the risk is appreciable, we weigh it up, but our emotions and personal—not necessarily representative—experience play a large part in our decision. If the last two patients who had that treatment did badly, it affects your judgement, even though the next twenty may do well. You have to guard against over-reacting to recent experience. Although your advice is largely the result of a combination of what is reported to be the case and your own experience, the risks vary in the individual case. Few doctors have enough experience of the diseases which they treat to be able to assess accurately the risk in a particular patient. If the mortality from some large series is 2 per cent for the therapy which you recommend, this does not mean that the risk for this particular patient who is old and has mild diabetes as well as the condition which you propose to treat is 2 per cent. The 2 per cent figure may have been arrived at by including every sort of lesion in patients of all ages and throughout the range of physical fitness, or alternatively, all the patients in the series may have been young and in good general health. For the patient in front of you, the percentage mortality or morbidity cannot be accurately assessed. Even if it could be accurately assessed it would be difficult to put it on the cerebral scales, because mortality and morbidity in the individual patient is an all-or-none phenomenon: the patient either gets the complication, or he doesn’t. It is difficult to ascribe weights to the possibilities that he will be better but he may be dead, particularly when the disease for which he is being treated does not threaten his life. In estimating the risk, it is easy to forget that for both medical and surgical treatment the skill of the author of the series may not be the same as your own.
A further difficulty in weighing up is that the patient himself would not be able to say in any authoritative way whether he would rather have the disease or the complication of treatment. Although he has experience of the disease, which the doctor is unlikely to have, he has no experience of the complication. For example, the pain of claudication can be excruciating. Operation may, if it goes wrong, result in loss of the limb. Who can say whether it is preferable to keep your own painful leg or to have an artificial limb, which after training may enable you to walk for miles in relative comfort? To some patients, the loss of a limb would be so horrifying that they would rather not take the risk, and would find life perfectly acceptable if they were pain free when walking about the house, if necessarily slowly. If the patient had led a sedentary life, if he lived in a flat with a lift, and possessed suitable transport, his way of life need hardly be limited. If, however, the patient’s pleasure came from walking or sightseeing, an artificial limb becomes a much more acceptable proposition. Whilst it is true that the operation is usually successful, in recommending it the doctor must give excessive weight to the complications.
Having made up your mind which treatment would suit the patient best, you then think about the details of the programme by which you will achieve this end. The exact course of treatment will be influenced by new findings and the patient’s response to therapy, but the clearer your mental picture of your broad strategy, the more effective will be your advice.
A proper doctor is ready to change course if at any time this seems to be necessary. You may want to change the treatment because it has been ineffective or only partially effective or if it has untoward side effects. Patients are willing to accept that you did what you thought best in the first instance, and that events have shown that the treatment was not satisfactory. They understand that now you are going to prescribe what you think best in the light of your observation of his response.
If the patient is harmed by taking your advice, you may feel that what has occurred is one of the known complications which you took into account when recommending the treatment, and that if presented with the same problem again, your advice would be exactly the same. If, however, the complication is unexpected, it will have to be put in the balance when next you consider a similar problem. Learning from experience is made more difficult because patients and their diseases are so varied that the outcome in an individual patient is uncertain. Frequently, the patient will or will not get better regardless of what you do. In those cases where the doctor’s judgement plays an important role in the outcome, it is difficult for even the most sensible doctor to know whether the outcome in a particular patient would have been different if he had acted differently. It is particularly difficult to know this when you do not have much judgement.
There is no external assessor. The opinion of patients is misleading because they confuse kindness, the amount of time the doctor spends with them and a successful outcome, with excellence. For all these reasons the feedback, which is so important for learning, is usually not available. Furthermore, if nobody is in a position to monitor your performance, it is easy to imagine that you are actually doing rather well.
Doctors are often asked, or may volunteer, their advice on subjects on which they are not qualified to give opinions. The fact that many years ago you spent three months “doing” midwifery does not mean that your opinion about the Leboyer method is any better than that of an equally intelligent layman, particularly if the layman has personal experience of the method. “Doctors for nuclear disarmament” should carry about the same weight as “Musicians for nuclear disarmament.” Limit your advice to those subjects in which you have expertise, or if you are forced to give an opinion, make it clear that you speak without special knowledge. If doctors give bad advice, it impairs the acceptance of their good advice.
In advice-giving, role-playing reaches its apogee. Truths, half truths and statistics have to be welded together into an instrument to make the patient better. Like a magician’s trick, if you can see how it is done, it is not magic; undetectable role-playing is a boon to the patient and the hallmark of the complete clinician. Your stance must tell the patient that you understand—and will manage—the physical, psychological and socio-economic aspects of his disease.
At the beginning of this book, I said that one of the main reasons for dressing like a doctor, behaving like a doctor and acting the role during the consultation, was to establish in the patient’s mind that you were worthy of the considerable trust which he has to have in you in order to take your advice. What is advised may be painful or frightening, or it may involve giving up some favourite occupation like smoking or drinking or exercise or eating or work. The doctor who advises a Head of State that he must resign on medical grounds must be very convincing if his advice is to be taken.
Once you have come down on one side or the other in a difficult decision, and perhaps taken advice, or waited a while for things to settle in your mind, then you must take the course which is indicated with total commitment. You know that the scales are inaccurate, that your decision has large unconfirmable components, and that a small change in any one of the components might have brought you to a different conclusion. It may be only a microgram of difference which has made you take course A rather than course B, but a sensitive balance comes down firmly on the heavier side, and stays there. The proper doctor acts as if there were no other course than the one he has advised, or rather as if the one which he advises is clearly the best course. The patient badly needs this feeling that the advice is wholehearted, whether it be a question of treatment or of reassurance that he is normal. William Evans, who first described the placebo effect, said that to get full benefit from it, advice must be given enthusiastically.
The way decisions are arrived at make it necessary to play a role when giving advice. Your doubts must not be allowed to show through. The doctor who tells the patient that he cannot make up his mind whether to do operation A or operation B is no doctor. Naturally, different methods of treatment suit different patients, but this must be taken into account during the weighing up process. The patient cannot imagine the two operations and perform comparative cost-benefit analysis. This is true even when the patient is a doctor in another speciality. Most doctors who are ill put themselves in the hands of someone they trust, and then they do exactly as they are told. Most patients have to make sure that they do trust you, and then they want to be treated in the same way.
I was once a registrar on a Medical Unit at a time when all the senior members of the team were more scientific than doctorly. Fair minded, intelligent, listening to all sorts of opinions and treating them seriously, they would present rather tentative views to the patient. Each time we visited the bedside of a nice old lady who had a hiatus hernia which was ulcerated, we dithered. We presented first one side and then the other to her and weighed, over and over, the risks and advantages of medical treatment compared with the risks and advantages of surgery. The pendulum swung from one view to the other and back and the patient looked sadder and sadder. Finally, we asked for a surgical opinion. The surgeon arrived, with a huge retinue in formation behind him. Tall, elegant, steely-eyed and with a speckling of grey in his immaculately barbered hair, he marched straight up to her and said “Madam, your stomach’s in your chest and furthermore it’s ulcerated. I shall put it all right, half past two on Thursday.” “Oh thank you doctor” she cried and her face lit up. Here at last was a doctor who knew what to do. She never looked back, and I learned the importance of appearing confident whether or not that confidence is justified.
We are not very good at forecasting outcome. Firstly there is the range of severity within a particular disease. Then there is the variation in human response to disease, both physical and psychological. The will to fight the disease can lead to “miracles” of survival. Finally there are the errors of diagnosis, coupled with the pathetic inadequacy of our knowledge. The world is full of eighty-year-old aunties who were told that they had “weak chests” and that they would not live a normal lifespan. Modern equivalents of weak chests abound. The diagnoses are more precise, but the accuracy of prognosis is about the same. In the individual patient who confronts you, in the face of all these likelihoods and possibilities, optimism seems to be the most rational approach. It is certainly the most fruitful and least harmful.
The desire to make whatever life is left pleasing, is what motivates most people. Whether that amount of time is half an hour or twenty years, that usually means leading a normal life. The doctor may have to modify that somewhat with his treatment. But the advice he gives is designed to get the patient back to as nearly his ideal life, with as little disruption as is inevitable, for as long as the most optimistic estimate might allow.
If what you have to tell the patient is encouraging, then saying it is extremely valuable. I once told a patient and his wife that in my opinion he had a normal expectation of life. When he died, only a month or two later, I felt that I would have lost face, but that his best interest had been served by my optimism. I was astounded when the wife wrote and said “You were the only one who gave us hope” and thanked me profusely for it. I realised then that hope is actually better than reality, and that is a thought to bear in mind when discussing a patient’s future.
It is perfectly appropriate to be optimistic in the worst circumstances. The disease has happened and nothing can be done now to prevent it. Often nothing could have been done to prevent it at any time. However bad the prognosis, that prognosis is based on average figures, and the patient in front of you may be one of those who does better. In almost every disease which has a bad prognosis there is the occasional patient who seems to be cured, and any patient may be as fortunate. Even incurable diseases have their ups and downs, and the patient who is down should be told that he will be better. The concept of eventual improvement boosts the morale as does the idea that a cure may be round the corner. Finally, and not as rarely as one would wish, the diagnosis may be wrong. For all these reasons the doctor can, and should, take an optimistic attitude and this communicates itself to the patient, with a very positive therapeutic effect.
The value of optimism is not confined to serious disease. If you are forced to advise an unpleasant course of action, it will be more readily acceptable if you emphasise the positive aspects.
As in history-taking, the words you use must be carefully chosen. Technical words and jargon have to be avoided, or when unavoidable, they must be explained. Long or esoteric words and initials are unnecessary and they may be dangerous if they are misunderstood. (A.P. may mean action potential, antero-posterior, artificial pneumothorax or angina pectoris.) The whole aim of giving advice is to be understood by the patient, and anything which impairs that is bad doctoring. If you mumble or speak too rapidly, the patient will not be able to understand what you say.
The doctor who needs a social worker to explain what he really meant is failing in the most important aspect of patient handling. If you lack the insight to see that the patient does not understand, you may need an ancillary worker to tell the patient what you mean. However, the main reason for incomprehension is faulty technique. Sometimes the doctor is so busy that he leaves the explanations to someone else, and this liberates him to perform more intricate tasks. In some situations, and surgery might be one of them, it would clearly result in more patients being processed and shorter waiting lists. But this would be achieved at the expense of proper doctoring. It is a matter of opinion whether it is better to treat two patients moderately well than to treat one patient properly. The answer to waiting lists is to appoint more doctors where that is necessary. Generally, it is only bad doctors who are too busy to finish the job properly. Advice-giving is the climax of patient handling, and it comes best from the doctor who made the decision. The role of ancillary workers should be confined to the innumerable non-medical aspects of the patient’s illness. Many patients consult doctors because they want someone to talk to and they may invent a symptom or two to justify the visit. Once you are certain that the symptoms are those of loneliness, a consultation with a nurse or a social worker may be of great benefit.
Patients are drawn from the whole of the population, with its bell-shaped distribution of common-sense and intelligence. It is imperative to adjust your attitude and approach to each individual. This is not “talking down”—which is unacceptable, and which betrays dreadful intellectual snobbery. If you are unfortunate enough to possess this defect you must suppress it in your doctor’s role-playing. There is nothing clever about being clever. It comes entirely without any effort on your part and is not correlated at all with niceness or humanity or good citizenship. Knowing all about endocrinology is a badge of knowledge, not a badge of superiority. A patient who is not as bright as you are may be your superior in every other respect. If the patient is a Nobel prize winner in physics, you still have to explain to him the nature of his disease and your reasons for advising the treatment. You have to modify your dissertation “downwards” in a way which would not be necessary if you were treating a colleague.
Although the knowledge flows down the concentration gradient, there is no need to talk down in the patronising sense of those words. You are explaining to a human being what you, in your role as an expert, think he should do. In order to do that you have to use whatever techniques are necessary to get the message across. It is your attitude which makes it appear that you are talking down, not the words you use.
Some doctors give advice badly, in a way which is upsetting to the patient. There are many reasons for this. If the doctor has feelings of insecurity about his advice to this particular patient, or about life in general, he may compensate by being bossy, or bullying or flippant or hectoring or even by being cruel. All these are attempts at self-aggrandisement in the eyes of patients or colleagues, and although the need for them is understandable, they are self-defeating because in the last resort there is only one way to score, and that is to send the patient out as well doctored as is humanly possible. The doctor must continually be asking himself if he is sacrificing the patient for short-term gains, the net result of which is antitherapeutic.
Tact combined with tactics is the essential ingredient in proper advising. Everything you say must be carefully selected and said with tact. Almost anything can be said in a therapeutic manner if sufficient tact is used. Almost anything may be made frightening and unacceptable if it is inconsiderately said.
As consultation has such a disturbing effect on the patient, he should not be given too much advice at one session. He is likely to retain only those parts of the advice which suit him, and it is better to restrict advice at the first interview to essentials, and to repeat a summary of what you said, and extend it, at subsequent consultations.
As you give your advice, you watch how it is being received and you tailor the extent of your revelations to the patient’s expectations and needs. You watch the reception of your every word, and like a driver on a straight road, you make constant fine adjustments of the steering wheel. If you keep the steering wheel fixed, small imperfections in the steering mechanism and the wheels, together with the camber and unevenness of the road, will cause you to end up in the gutter. If you plough on with your set speech, regardless of its reception, it is the patient who ends up in the gutter.
By and large you do make a similar speech each time, because you have the same things to say to patients who have the same disease. Experience teaches you what the “usual” requirements are. If you do this you are less likely to leave something out. But patients vary in the way in which they respond, and you have to make sure that each patient is getting the right treatment, and also that he is being told about it in the way which makes him most contented.
A patient may not hear what you say because he has a question to ask which is occupying the front of his mind. Will he be out of hospital by May the 8th which is the day his daughter gets back from abroad? Geoffrey Evans advised us to lower our voice and turn to the students if we had anything we particularly wanted the patient to listen to. Few people can resist listening hard to something they think they ought not to hear. Patients may have reasons for saying that they were not told. If they were not entirely convinced by the first explanation, they may want to hear another doctor’s opinion to see if the two coincide. They may not remember exactly what the first doctor said, and would like to hear it again. This is one reason for not giving too long a talk at one session. Most of what you say will be new to the patient and he may not be in the best mood to take it all in, or he may be of limited intelligence. Anxiety may prevent the patient from hearing what you say; Mike Matthews teaches that there is nothing so deafening as a hammering heart. Sometimes a patient says that you haven’t told him anything because he finds that what you say is too painful to accept. If he hears it again, he may begin to accept it.
The practice of giving the patient a leaflet about his disease so that he can read what you have said at his leisure sounds reasonable but, like a borrowed suit, it may or may not fit the patient. Leaflets often raise as many queries as they settle. It might seem reasonable to tape what you said to the individual patient and give him a copy. Unfortunately, the presence of a tape recorder is so inhibiting, for both patient and doctor, that the quality of the advice would fall. The patient will “hear” more if your advice is given in the form of a dialogue rather than as a speech.
Patients watch their doctor for signs that he is worried about them, and such feelings must be suppressed. A doctor may say “I’m worried about . . .” or “I’m more worried (or concerned) about . . .,” and such phrases are frightening. It is normal to feel concern, but it is unprofessional to show it. The pendulum has swung from the position where the patient was told almost nothing, and sometimes imagined the worst, to the opposite extreme where everyone he meets spends some time “putting him in the picture.” This process is just as likely to make him imagine the worst. A friend of mine who had suffered the symptoms of prolapsed intervertebral disc for years was admitted to hospital for investigation. In hospital she revealed that she had difficulty in micturition. When I went to see her, she looked much more worried than she had on admission. “They are all very concerned about my waterworks problem,” she said. This level of concern had shifted her view from the hypothesis that “It was only a disc” to “It must be cancer.” Fortunately it was only a disc, but demonstrating concern had done her a disservice.
If the child is old enough and well enough to understand, the doctor should, whenever possible, transact business through the child to the parent, rather than the other way round. Child and parent are told things in terms that the child will understand. If the parent asks a question, the answer is spoken to both of them. Children like to feel that they are the centre of attention and it is just as easy to say to the child “You must . . .” as it is to say to the parent “He must . . .” Sometimes the parents try and enlist the doctor’s help in order to coerce the child into changing what they regard as a “bad” habit. If it is a non-medical matter, the doctor should not line up with the parents against the child. If it is medical, he should be absolutely certain that the change is necessary, and he should be careful to explain the situation to the child.
The difficulties of talking to patients through an interpreter have already been discussed in Chapter 2. Foreigners, even those who speak the language relatively well, may not use words in precisely the same way as the indigenous population. They may convey or receive an impression which was not intended. Patients from abroad often have quite different expectations of their doctor and it may be difficult to determine what exactly they seek. In immigrant families, the men go out to work and learn to speak the language, but the women tend to stay at home with no one to talk to. Deprived of their family support, lonely and unable to communicate even with the sales staff in the shops, it is not surprising that they become depressed and develop symptoms. This possibility should be borne in mind whenever symptoms do not seem to fit into a recognised pattern.
The patient consults you because you are trained and experienced in treating the symptoms which he has, and about which he is almost always ignorant or ill-informed. Very often he has little choice about whom he consults, certainly not when his general practitioner refers him to a consultant, and indeed very often his choice of a general practitioner is limited. The general practitioner may be the only one in the area, or he may be one of a group of doctors, only some of whom the patient trusts, or he may be a new partner or a replacement of a retired partner in the practice. More and more frequently these days, the general practitioner may be a complete stranger from one of the locum supply services. Even if the patient knows that the doctor has a good reputation, the relationship between a patient and his doctor is a personal matter and they may not suit each other.
The doctor–patient relationship is based on trust. While you are busily peering at the patient in order to make a diagnosis, he is examining you to see whether he feels that he can trust you enough to take your advice. This trust is not based on an examination of your credentials, although the fact that you are licensed to practise should mean that you have at least the minimum qualifications for the job. The patient’s trust is based on the same sort of conclusions as the doctor’s advice. He looks at the doctor and decides whether he likes the cut of his jib. He must be convinced that the hair-raising procedure which is being recommended—or even the decision to do nothing—is without doubt the right thing for him in the circumstances. He must go into battle convinced that he is in the best hands.
People are skilled at this sort of rapid assessment, having practised it daily since childhood. Although they make mistakes, some more than others, it is astonishing how right most people are most of the time. Our happiness and well-being depend to a large extent on knowing whom to trust, so we are forced to become proficient.
There is a fashion nowadays for honesty in relationships, and this has extended to doctoring. The trendy, ostentatiously not-white-coated physician, who is trying to behave like “one of the boys,” may feel that in this man-to-man situation the patient will be happier to take his advice. Whilst there must be some patients who would prefer advice from a “mate,” the vast majority like to have their advice from someone who looks as if he knows what he is talking about. This look, like so many other faculties, is partly inherited and partly acquired.
Demeanour is most important. Whilst you are always absolutely serious, there is no place for gravity even if the prognosis is terrible. You may feel that it is dreadful that this twenty-four-year-old woman has a lactating carcinoma of the breast and that she will be dead in a few months. Nevertheless your attitude must speak to the patient reassuringly. If you think to yourself, “Lactating carcinoma. Right. What am I going to do to make the remainder of her life (and it may be much longer than you think) happy and useful?,” then your bearing will convey optimism rather than pity.
A great deal of what doctors do depends on illusion. We need it badly because we need to have the patient’s trust in order to make him as well as possible. If a doctor is seen walking down the corridor eating an apple, he is probably rushing from a busy morning clinic to a busy afternoon clinic and he is trying not to keep the patients waiting. Even doctors have to eat, and there is nothing shameful or embarrassing or upsetting about the sight of anyone eating an apple while walking. But if a patient thinks that this is surprising in a doctor, then a tiny erosion of his trust takes place. It is irrelevant whether or not the doctor’s self-image is dented by what he is doing. When within sight of the patients or their relatives, it is important for him to live up to their image of him because it affects the efficiency of treatment.
In this chapter I have stressed how inadequate is the basis for your advice, but if you are well trained and a craftsman, it is the best advice which can be obtained in the present state of knowledge. The whole atmosphere in the surgery or in the hospital should give the patient the impression that everything about the place is smart and efficient and that everyone is professional—with all that this implies. An atmosphere like this can be felt, and it gives the patient the confidence he sorely needs. Each doctor should be a personal centre of excellence.
Atmosphere is hard to define and it is the result of dozens of small items of self-control and self-sacrifice on the part of the staff. If the corridors look like the inside of a British Rail train, littered with potato crisp wrappers, cigarette ends and discarded sheets of newspaper, the patient feels that the organisation is run down and inefficient. It does not bode well for the arrival on time of the trains, and it does not bode well for the vastly more important treatment that he is about to receive. Theoretically, there is no reason why the train should be late just because it is dirty. But when an organisation is good, it is usually good from top to bottom, and there is a high probability that slackness in cleaning will be accompanied by slackness in keeping to schedule. Several patients have told me how their spirits rose when they were transferred from a run-down hospital to a centre of excellence.
Patients understand that treatments change and that if you said five years ago there was no treatment, you may now have some to offer. But if you tell a patient that his symptoms are not sufficiently severe to warrant surgery and then a month or so later, during which time he may have got a little better, you decide that your first estimate was faulty, your change of opinion needs an explanation. Even the explanation that you have been discussing “his case” with your surgical colleague who told you that he is now getting much better results is sufficient to make the patient accept the change of course. If you say one thing, and then say the opposite, the patient is bound to lose confidence. Nothing is gained by admitting that you estimated the situation carelessly or forgot to wait for the result of a crucial test. Craftsmen do not do the job carelessly. If, however, you were in the incubation phase of infectious mononucleosis at the time of your original misjudgement you can undo the harm that would be done to the doctor–patient relationship with a suitable excuse. In proper doctoring the patient must be able to feel that his doctor is competent, consistent and caring. The craftsman aims at impeccable performance from beginning to end with each patient.
It is generally held, and is I think usually the case, that patients do not like to think that their doctor is susceptible to disease. Thus the effect of telling them that you yourself once had the disease and are now fit and well fails to reassure because you lose your magic. As with most generalisations, there are exceptions and some people are reassured if you tell them. Sick doctors, perhaps because they are fully aware that a medical degree does not confer immunity, seem particularly susceptible to this revelation, and latch onto it with an enthusiasm which indicates that they have temporarily suspended their statistical faculty.
Nothing is quite so destructive of confidence as conflicting information. One doctor is in charge of the patient and ideally he should be the common channel for any information. The patient comes into contact with many doctors and ancillary workers, all of whom may offer, or be asked for, their advice. It should be clearly understood who is in charge of the patient. Whilst the doctor in charge must listen to sensible opinions, individual members of the team should be left in no doubt that they are not licensed to give the patient a dissenting opinion or one which conflicts with the party line. There is no place for democracy in giving advice to patients.
If someone says something to the patient which is contrary to the views held by the doctor in charge or says something which should not have been said, then the doctor in charge has to “pull rank.” He must say, as tactfully as possible, but with as much authority as is necessary to disabuse the patient, that the information is wrong and that its supplier was in error. It is difficult to say this without loss of face for the culprit, but this is better than loss of the patient’s peace of mind. The team member may play an important part in the patient’s treatment, so his authority must be left as in tact as possible. He may of course be right and the doctor in charge may know it, but if it should not have been said it must be refuted. This may be a difficult thing to do.
A team member may consider that the advice which has been given to a patient is so offensive to his moral principles that he cannot carry it out nor even appear to agree with it. This situation is uncommon, but it does occur. If the team member is quite certain that the matter is a problem of conscience and not merely a difference of opinion, he should thrash the matter out with his chief before he sees the patient.
If discussion does not solve the problem, or if the team member is convinced that his chief’s mind has become unbalanced, then he may be forced to resign or to take the matter to a higher authority. Whatever action he decides to take, the differences of opinion should be kept from the patient.
In many trades and professions, once you have dealt with an item of business efficiently, you can pass it from your “In” tray to your “Out” tray and forget about it. With patients, responsibility is continuous. If you are off duty or asleep when called, you go and see your patient not because of your innate good nature, but rather because it is implicit in the contract. You do not have guaranteed off duty times, rather you are off duty unless you are needed. When your patient moves to another department, say for investigation or surgery or radiotherapy, you must ensure that the new doctors are informed about any features of your patient’s illness which may affect the way in which they handle him. You “hover,” if only in spirit, over your patient until he has passed through any difficult period, and you continue to do so after he has left hospital. He remains one of “your patients.” Patients usually feel that themselves, and they feel too that although they have been discharged, their doctor would send for them if some successful new treatment was discovered. This is a lofty ideal, but you should aim at it.
Most patients come to consultations unaccompanied, and they may or may not tell their relatives the same story as you have told them. Patients often protect their family from bad news, and the story which the patient tells his relatives is his own concern. As one marriage in three ends in divorce, patient and spouse may be at loggerheads. As the doctor’s “contract” is with the patient, he must accept the patient’s decision about what the relatives should be told. Of course if this makes treatment more difficult, one can reason with the patient when you are alone together, but the doctor should make every effort to tell the relatives only what the patient wants them to know. The range of information which a patient wishes to keep from relatives is enormous and often unpredictable. A seventy-year-old man asked me not to reveal his true age to his wife; he had added five years to it when they were courting, as she had wanted to marry a man older than herself. He had been living with this “fib” for half a century, and was desperately anxious that she should not find out.
Almost everyone enjoys giving and receiving presents. Most patients are worse off than their doctors and you may feel that his need is greater than yours. But the patient who gives you a present has made up his mind to do so, and however large or small it is you should accept it gratefully no matter how you feel about taking it.
In an attempt to make medical practice seem more democratic, a great deal of lip service is paid nowadays to the patient’s role in the decisions which affect him. In fact the patient’s role is limited. The fundamental difficulty is that it is not really possible for the patient to have a worthwhile opinion about the technical aspects of his condition, and these aspects are important in determining what is to be done. There is no way of educating him up to a level whereby he could participate in these aspects, even if he is a doctor in another speciality. It is difficult to put a gastro-enterologist, for example, completely in the picture when he has a cardiac infarction. Although the pros and cons of this or that form of therapy may interest him enormously, he is in no position to choose whether he ought to have it or not. Any pretence of “consultation” on technical matters is bogus. The patient has a number of views about what you propose and he must be encouraged to state them. There may be personal feelings which you have not elicited—for example he may be so frightened of having an operation that he would rather put up with his symptoms than submit to surgery. Sometimes there is a problem of an “administrative” nature; he may be going abroad for six months and would like to get the operation over before he goes, or alternatively he would like to wait until he gets back.
This view of the patient’s role is not based on a low estimate of his intelligence. Some patients are more intelligent than their doctor but they know very little about the complicated subject of medicine. When the service engineer tells you that your car needs a new gearbox, you are “entitled” to your view that your car just needs servicing, but you are unlikely to be right. Just as an amiable mechanic will listen to what you say and answer it with a demonstration or an explanation as to why you have got it wrong, so a proper doctor will try to do the same. This is necessary to make the patient content to take your advice, but it is nothing like the democratic process.
Judging what treatment to advise is the most skilled aspect of medicine. Judging how to advise it is the next. The patient does not have the experience to know how much about his disease he would rather not know. As you cannot know until he finds out, you can have no preconceived notions about “what you always tell patients.” Rather, you tell them the minimum amount which will satisfy them and you do not overload them with information that they would rather not have heard. The doctor who always tells patients if they have cancer, or the one who never tells them, are both failing to show the adaptability to the patient which is a hallmark of proper doctoring.
You can tell from experience and insight what patients want to know as you are talking to them. You can tell where they require reassurance, what questions they would like to ask if they dared, what they do not want to be told in any circumstances, and what line to take with them. You must maintain that elasticity of mind which enables you to treat everyone as an individual and to change course when your antennae tell you that your usual line is unprofitable. You must have your answers pat, and it is more important that your story should be consistent, logical and directed towards getting the patient well, than that it should be the whole truth or scientifically accurate.
If the patient decides that he will take your advice, he neither wants you to justify it, nor does he want to hear all the complications, nor does he want a crash course on physiology and disease. He wants to know what you propose to do about it, and in order for him to accept your proposals he has to know a number of things about the situation, which you proceed to tell him. The amount which he wishes to know varies enormously. Many patients brush away even the barest explanation with “I’ll do anything you say doctor”; most want an outline description, and a few ply you with questions and then go and read it all up. Assessment of what the patient wants to know is as skilled a process as any other in medicine. Whereas on the one hand, many doctors do not give adequate explanations, on the other, only an articulate minority demands lengthy explanations. The majority of people, often including the articulate minority when it comes to the test, do not actually want to know the details.
At dinner parties, or on TV chat shows, the “advanced” view is that if the speaker had anything wrong with him, he would like to know all about it. A substantial number of the less “advanced” disagree, and they belong to the school of patients who present no problem about how much to tell. The “advanced” people present more of a problem: the question is, how much more do they want to know? I have already said that many healthy people genuinely think that they want to know everything, but that when they are sick, they change their opinion.
There are many popular books written for the layman about living with various diseases, and the point is often made that if you do not tell the patient enough, he will buy a book or look it up in the library. In fact few people do look things up, and even if more did, it would be no indication to tell them all about the disease. The choice of how much a patient should be told should be left to the patient himself. That is to say, as you are giving him your usual, minimal explanation of the disease itself, you look at him to see if this is enough, and you tell him more until he is satisfied. The patient’s face exhibits clear signals if he is unsatisfied, or if he does not want to hear any more. These signals, which take time to develop, determine how much you tell, and when you tell it.
A friend of mine was recently discharged from hospital where she was under the care of a well-qualified and well-intentioned doctor. He intercepted her husband and son, whom he had not previously met, as they were on their way to visit her on the day of her admission to the wards and told them that she had cancer of the colon and that it had probably spread to her lungs. The stunned husband, who had been told by their GP that the patient had a urinary infection, asked how sure the doctor was that it had spread to the lungs. He replied that he was 80 per cent sure. The relatives made their way to the ward and could not hide their distress from the patient, who had not been told of the diagnosis. For a week they had to pretend that there was nothing seriously wrong. The doctor then visited the patient and asked her if there were any questions which she would like to ask. She said “No.” He asked if she was sure that she had no questions, and she replied “No thank you. I am happy to leave matters entirely in your hands.” As the doctor moved to the door he turned and said “Are you quite certain that you have no questions?” She could see that he wanted her to, so she asked if there was bad news. “Yes” he said, “you’ve got cancer” and then proceeded to tell her all about it in terms which she said were largely incomprehensible.
The patient and her husband and son were a tightly-knit family, and the mother was easily the most sensible, resolute and stable of the three. If—and in my view this was unwise—he felt compelled to reveal the diagnosis, he should have waited until he got to know them before he broke the news. He chose the worst time to tell them, when they were fully occupied in trying to accustom themselves to the fact that the patient was in hospital. In choosing to tell them when they were on their way to see her rather than on their way out, he allowed them no time to master their feelings, and in fact the husband, who was ill-equipped to receive bad news, broke down and cried when he saw her. She could not understand why he was crying, and it upset her.
The revelation that she had cancer was more than enough for a first consultation. If he was only 80 per cent sure that the growth had invaded the lungs, he should have said nothing about that. The patient had only been in the hospital for a day, and further tests showed that the lungs were not affected. He should have waited for all the test results before he gave an opinion with such grave prognostic implications. He delayed for a week before he revealed the diagnosis to the patient, and the husband said that he found it almost intolerable to tell lies to his wife for the first time in their relation ship. The patient made it perfectly clear that she did not want to ask any questions and he ignored her signals. His explanation too was incomprehensible.
The family were subjected to a great deal of unnecessary anxiety as a result of this series of misjudgements. They felt that they had no confidence in a man who told them that the lungs were affected, and a day or two later that they were not. It is not surprising that they asked their GP to refer them to someone else.
You may ask the patient if there is anything else he wants to know, and if there is, or if he thinks of a question after he leaves you, your attitude must make it clear that you are willing to answer. Many patients have unforeseeable questions which they fail to ask because they do not want to waste your time. Clearly it is not a waste of time, and is certainly preferable to their worrying about the question until they eventually pluck up the courage to ask. If a patient wants to look it up, that is up to him.
If he does look it up, and asks you about what he has read, you ask him if he can lend you the article. Having read it you can agree with it if you feel that it is true, or does no harm. If in your opinion the article is misleading or wrong, you must say so. If you feel that the effect of the article is harmful, and if you are sure that you will not have to eat your words at a later date, you can say, regardless of whether it is true or not, that the article is not relevant to his case. People are eager to accept the idea that in their own case things are different.
Most people lack experience of most of the thousands of incidents which happen in the course of everyday life. For example, many people have no actual experience of anyone close to them dying. If they have, it may not have been the same sort of dying as they are confronted with now. If one of your family is killed outright in a road accident, it offers little or no guidance on how to cope with death from a long-drawn-out and unpleasant illness. And this is true of admission to hospital, or being knocked down by a bus, or being mugged, or even being burgled. The fact that personal experience of these quite commonplace events is so limited, means that we get our “experience” of life largely from hearsay, television, the newspapers, films, the theatre or novels. The doctor must bear this in mind when he talks to patients. He must also bear it in mind when he answers patients’ questions. If the patient says “Is it cancer doctor, I would rather know,” he may be mouthing the usual cliché which comes out of the mouths of actors when they are playing a sick man. We have a series of conversational gambits which we use in response to bad news. Often the gambit is not meant to be taken seriously, it is simply a way of saying that you acknowledge the news, and will make your dispositions in good time, when you have recovered your balance. Some people who say that they would rather know, have not stopped to consider the implications of knowing. They do not have to consider too deeply to want to know that it is not cancer; that news is always welcome. But if it is cancer, many people close their eyes to the information when it slips out or can be easily obtained. It does seem as if part of the armamentarium of some patients against disease which is likely to be fatal is to pretend that it does not exist.
The mind is capable of tremendous self-deception. I have known two experienced surgical colleagues of high intelligence who died of cancer. Their minds were perfectly clear when they spoke to me. One said that he clearly would not be ready for work again for a month. The other said that he was so well that he felt that the diagnosis must be wrong. Both were clearly dying at the time they made those remarks, and in fact both died within a month of saying them. Whether they “knew” or not is irrelevant; that is what they said, and it is not the doctor’s job to contradict them with the “truth.”
This book is not the place for a full discussion on this very difficult matter. I just want to point out that there is a good reason for taking things slowly, and thinking about the true nature of the question before you answer it. At the outset, the patient does not know what he wants to know, and neither do you. You explain as you diagnose, expectantly. You speak when the moment is right and you say what you are certain the treatment demands, or the patient really wants to be told. The important thing is not to say anything which you will be unable to explain or explain away at a later date. Satisfying the patient now, should not be achieved at the expense of a breakdown of the doctor–patient relationship in the future. As in sailing, the aim is to reach the destination, and it is a mistake to lighten ship in a storm by tossing the sails overboard.
The newly qualified doctor may not have the knowledge or confidence to bear the burden of truth on his own shoulders and may off-load it on to the unfortunate patient. Sometimes this behaviour pattern becomes fixed for the rest of his career.
Most patients want to hear that everything is going to be fine, and if it is not going to be like that, you can act therapeutically by concentrating on the positive aspects of therapy. There is no room for gloom or pessimism at the bedside. Anaesthetic deaths do occur, the gas cylinders do sometimes get connected up the wrong way round, wounds get infected, the bones may not unite and some patients are transfused with the wrong blood. All these things, and all the other complications of treatment which have at some time been described, are taken into account before you make your recommendation. Their prevention in the patient under consideration is your problem and that of your colleagues.
It is undoctorly to present the patient with a list of the complications of therapy and ask him to decide whether he is prepared to take the risks. He has no experience of them, and the burden of choice is the doctor’s. Once the patient has agreed to accept the treatment which you advise, it is bad doctoring to add to his fears by enumerating more complications than he has already anticipated. The patient seeks your advice on what to do, given the risks of doing it. He is not looking for a menu of complications; he is asking whether you recommend the dish of the day.
The less the patient hears about risk the better, for he has enough on his mind and is busy adopting Nelson techniques for not seeing them. The mind has its own ways of dealing with distasteful matters. It is perfectly reasonable to let the doctor worry about the situation, and to think of something else oneself, and in my opinion this is the ideal situation for the patient. As in talking about investigations, the doctor’s reticence about aetiology and prognosis should be balanced by a flood of information about “behavioural” aspects of the disease and its treatment.
There is a school of thought which believes in putting all the complications, no matter how remote, to the patient, either on the grounds that it is only fair, or on the grounds that if the worst happens the patient will have been warned and therefore unable to sue. Patients rarely sue, and when they do it is usually for negligence. The possibility that a conscientious doctor will be sued for failure to reveal a complication is so remote that it should not influence what is said to the patient.
As with investigations, if therapy produces some unpleasant side effect which the patient is unlikely to anticipate, then he should be told about it in advance. For example, if you say that the leg will be sore for a week or so after the operation, because that is where they take the graft from, the patient will then realise that the graft has got to come from somewhere and that you cannot make an incision anywhere without it being sore. So he will not worry when he finds that his leg is bandaged from thigh to ankle, and that it hurts and throbs.
We live all the time with risk, such as traffic accidents, and although our attitude is neither calculated nor reasonable, we accommodate to it. In dangerous situations from which there is no escape, or which, like driving a car, cannot be avoided if we are to live a normal life, people adjust to any new risk, and take it in their stride. Many people are sure that they will die under the anaesthetic, and this is a perfectly reasonable fear because they may. Of course if anaesthetic mortality is one in a thousand then one may, but 999 will not. For the one who dies, the mortality is 100 per cent, and unfortunately there is no way of knowing which group you belong to until it is all over. When I visit a patient the night before major surgery, I leave him with the thought that in seven days he will be a new man, or that when he comes round from the anaesthetic he will be free of pain for the first time in ten years. This therapeutic concept provides an antidote to the thought of certain death under anaesthesia.
The public has a very poor understanding of statistics and of logic. Since the Second World War, doctors have received a great deal of statistical education which is notably lacking in lawyers and architects and politicians. The patient is unlikely to have a rational approach to the statistics of his situation. Some operations which are familiar to him, like varicose vein or hernia operations, he feels are entirely safe and entirely successful. Other operations, particularly in the thorax or cranium, he regards as very much less successful and more dangerous than they actually are.
Patients occasionally ask if the operation is risky. This question makes me feel that my exposition has failed, for I should have made it clear that the operation was less risky than doing nothing. I suppose some do understand this, but still ask the question, because they had decided to. After all, if you are about to submit yourself to some dangerous procedure, you might reasonably want to know the risk. You might also prefer not to. When I am asked this question, I use a very successful technique which I learned from Wallace Brigden. I ask the patient what risk he would consider reasonable, and invariably the answer is 50–50. Now this is an enormous risk, and almost all the heart operations except transplantation, are done at risks below 10 per cent. The mortality of the safest ones, such as closure of a ductus arteriosus or of an atrial septal defect, is well below 1 per cent.
The practical advantage of asking the patient for his evaluation of the risk is that he is enormously pleased to hear that the risk of dying is 2 per cent rather than 50 per cent. The theoretical interest is that it reveals how wide of the mark the patient’s view is and how necessary it is to tell him, whether or not he asks, that the procedure is safe. A homely analogy, like crossing the road, or riding a bicycle in a city, or air travel, or riding a motorcycle, or mountaineering, gives the patient more of an appreciation of the risk than a figure does. Of course the figures of mortality for mountaineering are not available, but it is an estimate of the degree of danger that the patient wants, not an actuarial survey.
Some expressions—enlargement of the heart is one of them—frighten the majority of patients. Before using them, you should estimate whether it is necessary, in the interest of treatment, to tell the patient about the finding. If not, then it is better not to say it. If you are trying to press home the advantages of taking medication for high blood pressure, you can say that the extra load on the heart is reduced by the treatment. It is not necessary to reveal that the heart is hypertrophied or enlarged. It is rarely advantageous to mention a frightening abnormality.
Some patients will already have heard about their “abnormality” before they come and see you. The cardiathoracic ratio measured on a routine chest x-ray may have been greater than one half, and this may have been reported as “the heart is enlarged.” The fact that the patient is an athlete, or has failed to take a deep breath, or has such a flat chest that a normal-sized heart is squashed and flattened, may mean that the “enlargement” is not real. This is one of the dangers inherent in the interpretation of tests on their own, out of context of the clinical findings. Lengthy explanation may be required to convince the patient that the finding is erroneous.
If the heart actually is enlarged, but appears to be normal in every other respect, the patient may derive comfort from the concept of the normal distribution curve. As a Parthian shot you can say that his larger than normal heart is no more abnormal than a 6 foot 7 inch man is a giant. If the patient asks you if his heart is enlarged, you should say that there is some enlargement, but never that it is huge, even if the chest x-ray is visible on the viewing box. Patients rarely know how to estimate heart size. The patient whose heart is diseased may regard enlargement as an all or none phenomenon, and the concept that in his case the enlargement is slight, may be therapeutic.
What has been said of the heart is of course applicable to all other abnormal findings.
Time plays an important part in many aspects of handling patients. A difficult diagnosis often becomes clearer with time, either because of some new development, or because the patient lays a different stress on some previously reported aspect. Many difficult problems are solved by taking the history again.
As in dinghy sailing, there is usually only a limited number of courses of action in each situation. It is the timing of these actions which distinguishes the Olympic helmsman from the tyro. The shrewd doctor can sense the slightest change in the wind and bides his time. Time plays a part in the patient’s acceptance of his condition. The shock of the news that he is about to lose a limb or one of his faculties, may make him feel that life is not worth living. In time he usually comes to feel that even this great loss leaves a lot of other pleasures.
It is easier to accustom oneself to a gradual onset of symptoms. The patient who is suddenly blinded has much greater difficulty in adjusting than one who loses his sight gradually, not only for the practical reason that he has less time to teach himself to adapt, but equally because the mind accepts anything, given time. Consequently, telling the patient that something awful is inevitable may be better delayed—at least the benefit of delaying should be taken into consideration when the doubt of not knowing is making the patient press for the information.
Time is very important in handling chronic disease. In many diseases the patient may be seeing the same doctor, or his successor, for twenty or thirty years. However long the disease lasts, for the hospital doctor, or for however long the patient remains on his list, from the point of view of the general practitioner, the doctor must be consistent. Your story must hang together. If you adopt a proper paternalistic approach to the patient you will have told him some things and omitted others. You should make a note of what you have told him, so that you do not contradict yourself.
Illness has a distorting effect on the patient’s sense of time. A man who is willing to queue all night for a ticket to a concert or a football match will often be furious if he is kept waiting when he consults a doctor. Although he knows that it is very difficult to allot appointments because of the unpredictable variation in time taken for consultation, he can see no reason why his appointment should be delayed. Clearly, waiting time should be kept as short as possible, especially for the old, the very young and the frail, who should be seen out of turn if necessary. When patients complain about delay in being seen, I point out to them that there is no way in which a National Health Service can economically offer a service without waiting times. I say that to wait to have a decision about one’s health seems to be at least as cost effective a way of spending time as is queueing to see a football match.
One of the advantages of a parallel private system, is that those whose time is enormously valuable, can pay for a service with minimum waiting for about the price of a meal in a good restaurant. This too seems to be a sensible way of spending money.
Medical students spend a lot of time talking with patients. After years of often boring or irrelevant preclinical work, they are let loose in the wards and they feel that even if they do not know much about examining patients, they can at least talk to them. The patients are a captive audience and they like talking to nice young students who take great interest in what they say, and who can be questioned on aspects of their disease which they are not too clear about. The patients do not realise that the students themselves are not too clear about disease. The students do not realise that talking to patients is an art which is much more difficult than feeling the spleen. Furthermore, the students believe every word the patients say. One invariable result of these conversations is that the students feel that the doctors don’t tell the patients anything.
Each generation of students feels this way. I certainly did, but of course in those far off days we were too shy to say anything. The modern student will accost you in the corridor or in the bar and speak his mind. At my hospital we got so fed up with this accusation that we got a pair of students to listen in to the interviews with the patients, and made them record what we said. We sent another pair of students off to see the patients in their homes. Sure enough they came back with the complaint that we hadn’t told them anything, but this time we were able to confront them with documentary evidence.
The proper doctor maintains an elastic attitude to explanation, giving it as required both for treatment of the patient’s disease and for his peace of mind. He is careful about explanations, particularly when all or part of the explanation is speculative, because he may have to eat his words at another time. This is a much more difficult process than saying only what you know to be true in the first place.
Explanation, like everything else the doctor does, is used as a therapeutic weapon, and can be aimed at increasing the patient’s motivation towards accepting the treatment. If the patient is given some pills to be taken three times a day, but without any “explanation” of what they are for, he is less likely to remember to take them than if he is told that they will take the load off his heart by reducing his blood pressure. This information, which is so superficial as to barely deserve the name, makes him feel that by taking them, he is helping you to help him. He has a vested interest in getting better, but the explanation makes him a partner in his progress.
Our curious method of making decisions also determines what we say to the patient. As a lot of decision-making is based on guestimates, and other parts of it are the result of sensations which cannot quite be described, explanation is bound to be less than satisfactory. Patients overestimate our knowledge, and the more you tell them about mechanisms, the worse it sounds. Indeed, the longer an explanation is, the more likely is it to reveal its shaky foundations. The shaky foundation is the best we can do at this time. We are steadily improving, and if the patient could wait twenty years we would have a better based medicine. But the patient needs advice now and you give him the best you can, knowing that it is good, but that it will not stand the light of scrutiny.
Inadequate or incomprehensible explanations give no reassurance. The explanation you give should aim at satisfying the patient, so that when you ask him if he has any questions, he says “No thank you Doctor, you have told me all I want to know.”
The purist frowns on analogies on the grounds that they are rarely exact enough to be accurate. Nevertheless we often think in terms of analogy, and we certainly use analogy to further our understanding of physiological mechanisms. The application of cable theory to nerve conduction has led to a substantial advance in our understanding. In spite of what Richard Asher said about the imperfections of the motor car analogy, the heart for example has much in common with the petrol engine. Many people have a superficial understanding of how a petrol engine works. If you tell them that their problem is something like maladjusted slow running control or a speck of dirt in the carburettor jet, it conjures up a readily understandable and passably accurate image. Many parts of the body have similar mechanical or everyday analogies which are effective in explanation. It is, however, important to make certain that the patient is familiar with the analogy. Most cardiologists understand haemodynamics better than they understand electricity, and they are usually confused when they are offered electrical or mathematical analogues of haemodynamic concepts.
It is a surprising fact that many patients do not know the name of the disease for which they are being treated. Whenever possible, the disease should be given a label, and the label should be interpreted where that is necessary. Certain diseases are accepted without explanation by the majority of patients. Stomach ulcers, varicose veins, hernias, piles, lumbago and cancer, hardly require description, although in fact the words cover a range of diagnoses.
If you tell the patient that his symptoms are due to a stomach ulcer, and that you are going to prescribe some pills which will allow the ulcer to heal, you will have told him the diagnosis and what you propose to do about it. If he believes that he knows what an ulcer is, he may not require any further in formation. Alternatively, he may ask why people get ulcers, and how the drug works, etc. He may also wonder, but be frightened of asking, whether the ulcer is malignant. The clinician judges, from the look on the patient’s face, if anything needs to be said in reassurance. He may decide on a pre-emptive strike by telling the patient that he has a benign stomach ulcer and that . . . If the question of malignancy had not entered the patient’s mind, it is a pity to put it there by saying that the ulcer is benign. Once the issue of malignancy is raised, the patient may wonder if the diagnosis that the ulcer is benign is conclusive.
Explanations may backfire. A patient was told that his ulcer was caused by excess acid in the stomach, and that vagotomy prevented the formation of excess acid. When, after the operation, the ulcer recurred, the patient wanted to know how this could be so, as the vagotomy had stopped the excessive acid secretion. The role of acid and the vagus in peptic ulceration is not entirely understood, and it would have been better if the surgeon had simply said that vagotomy allowed the ulcers to heal. Patients understand that in their case the operation has been unsuccessful. But the “pat” story about acid took a good deal of explaining away, and in the treatment of the whole patient it was actually harmful, because the patient became sceptical. The temptation to “clinch” matters by going beyond what is actually known for certain, either about the patient or about the disease process, must be resisted. Patients say, “There must be a cause for my giddy turns.” Of course there must be, and there must be a reason why they occur at random times, but although we may be able to find some abnormality of vestibular function, we may never find out why it comes out of a clear blue sky, in a different situation each time. So the “explanation” that it is vestibular is hardly worthy of the name.
Most people who consult doctors have no “disease” other than the ageing process, or the symptoms of abuse of their physique. Many other patients have overestimated the implications of their symptoms, so reassurance is one of the main therapeutic weapons, and it may well be the most important. When you have done a particularly good job in reassurance, patients often say “Well, I’m sorry to have wasted your time then doctor.” I tell them that far from wasting my time, my favourite medicine is soundly based reassurance. From the point of view of drug kinetics, or of getting your series up to a hundred, reassurance is not as interesting as active therapy, but from the point of view of doing good to the greatest number of people, it is incomparably more effective. In addition, it is going to be your most frequently used therapeutic tool, so you must do it properly, and one of the best ways of doing that is to enjoy doing it. Train yourself to derive more satisfaction from reassuring patients than from giving them drugs. Unlike so many drugs, it actually does the patients good.
All illness leads to anxiety, even when that anxiety is not expressed. You should ask yourself what fears are engendered by the disease which the patient has, and you should give the necessary reassurance.
William Evans used to teach that reassurance is the most precious pill which we administer. Many patients do not require any other medicine, but the “busy” practitioner often “saves time” by prescribing drugs which alter mood, in what he takes to be the appropriate direction. He then spends a great deal more time administering other drugs to counteract the side effects of the “mood benders,” and the patient is no better for any of the medicines. When the patient can be satisfied with a verbal explanation, it is malpractice to administer drugs. William Evans coined the aphorism “It is better to do nothing than something, when nothing needs to be done.” Dornhorst made the same point with his inversion!” “Don’t just do something, stand there!”
Patients with organic disease are often—and entirely reasonably—depressed by their condition. If they are reassured about its nature, they rarely need antidepressant drugs, which anyway seem to be largely ineffective when used to suppress appropriate, unreassured, inadequately explained anxiety. The idea that an organ, though diseased, has untapped functional reserves, is more antidepressant than any pill.
Reassurance begins during the history-taking. The way you react to the patient’s symptoms can be reassuring or terrifying. So too in the physical examination, your mien reassures. If you take a history which is absolutely diagnostic but which the patient feels has been too short, it will impair the efficacy of your reassurance at the end of the interview.
In the physical examination your response to the findings with raised eyebrows, cluckings and cries of unbelief, will be fertiliser to the seeds of fear which the symptoms have sown. Again, if the examination appears to be too short, the patient will feel that you could easily have missed some important sign. A skilled craftsman can examine a system extremely quickly. Complete examination of the heart, extracting every physical sign, can be done in less than two minutes, and a speedy neurologist can examine that system in three minutes. In an emergency, one often only wants to know one sign before taking action, and this may only take seconds. If the history is not that of organic disease, it is important to take an adequate amount of time in examination, particularly of the part which is giving rise to the symptoms. “He didn’t even look at it” precludes successful reassurance. Certain investigations have a magical significance to the patient. The electrocardiogram, whose contribution to the health of nations is slight, is one. If it is normal, or said to be normal, it has a profoundly reassuring effect, in spite of the fact that a significant number of patients with ischaemic heart disease have a normal graph. This should not deter the clinician from using a normal graph as a weapon to “prove” that the patient has a normal heart.
In most tests there is an overlap between normality and abnormality. If the doctor decides that the patient is normal, he must ignore the equivocal results and put the abnormal ones to the back of his mind. Your reassurance must be wholehearted even though your information is frequently incomplete. If you based everything you said on the most cautious or the most truthful statement, you could never reassure anybody about anything. If the patient is normal, much harm can come from telling him about equivocal or “false positive” results. If the patient has already been told of the result, or if there is a likelihood that the test will be done again at a later date, the clinician must explain to the patient that tests are fallible, and that in his case the test is wrong. The patient must be told that if the test is done again the result should be ignored. A great deal of harm is done if unconvincing or half-hearted reassurance is given. In neurotic patients symptoms are like forest fires: the earlier and more firmly they are stamped out, the less likely are they to take over. The more neurotic the patient, the more reassurance he needs.
William Evans taught of the importance of not qualifying reassurance. If the patient is entirely normal, then no qualification is necessary. If however he has some disease, some qualification may be necessary. A patient whose ruptured Achilles tendon has been successfully repaired may ask if he can play games. If the tendon ruptured while playing football, it would perhaps be stupid to play again. But if the man was a professional or had a good chance of achieving some lifelong ambition in the game, he might be prepared to risk its going again. He may not realise that a second repair will be made more difficult by the first operation. If you put the “cost” clearly to him, he may make his own decision. This is not the sort of string that William Evans was referring to. He was referring to the reassurance that the pain was not coming from the heart, followed by advice not to hurry, just in case the pain was atypical angina, that dreadful ragbag of doctors’ indecisiveness.
The way you put your “string” matters enormously. If a patient asks you if he can go back to playing football, you can point out that he is at the age when most men give up rough games; if you add that he could play tennis, or golf, or sail or swim or ride, your string will lose much of its sting.
Reassurance takes time. “It’s nothing to worry about” or “You’re normal,” although pleasing to hear, is not an effective therapeutic dose. Having clearly given the matter enough thought, and the patient enough examination and tests, you sit him down comfortably, look him in the eye and looking pleased you say “I am pleased to tell you that the symptoms which you describe are not those of . . . The examination was absolutely normal, and so were the special tests that have been done. You have a normal. . . .” You do not say that you could not find any abnormalities, because this might mean that they escaped you because you were not looking in the right place. It might also mean that although the organ in question was diseased, your examination and tests were not sensitive enough to detect it. This of course is always possible, and it is one of the places where a test can be so useful. If it is non-invasive, or requires only minimal assault, it may be used as a weapon to “prove” that there is no abnormality, and that the reassurance is soundly based. A surfeit of tests is unreassuring, but if the patient is suitably primed beforehand, by “I am sure that your . . . is normal but this test will tell us for certain,” then a test may be therapeutic for those who appear unwilling to accept a clinical estimation.
Some patients prefer instant reassurance, and if the doctor’s certainty is totally convincing, they accept it delightedly and rush away before you can suggest a test or two. Others need two or three repetitions of a message of reassurance, dotting the i’s and crossing the t’s, before they can accept it. You have to make up your mind during the consultation which type of person you are dealing with.
If you are quite sure that the patient is normal, your reassurance is undermined if you ask him to come and see you again about that particular problem “just to be on the safe side.” If you find a shadow in his chest x-ray which is almost certainly “inactive,” you are forced to re-examine his radiograph after an interval. You can say that you are sure that the x-ray change is of no significance but to make assurance doubly sure, your routine is to re-examine in three months. If you add that you are sure it will be normal when you do it again, you mitigate even if you cannot eradicate his anxiety.
Age is an advantage in giving an opinion of any sort, particularly in giving reassurance. It is easier to believe the reassurance from a grey-haired doctor than it is to take exactly the same words from a youth half your own age who looks as if he is too young to know much about it. William Evans says “Age buys experience, and in medicine, experience is a precious commodity.”
Some years ago I developed symptoms and signs of carcinoma of the rectum. I consulted a wise physician who listened to my textbook story and asked a number of questions. When he had finished taking the history and before he had examined me, he said that this story was not that of carcinoma of the rectum. I found this statement totally convincing, and although he went on to examine me, and order the appropriate tests, his ex cathedra statement had already cured me. He had spent years listening to such stories and, like other experts, he could tell that what appeared to a cardiologist to be classical, was in fact a fake.
If you tell the patient that his symptoms have no organic basis, he may find it difficult to accept that the sensations he experiences, which he didn’t previously have, can have “no cause.” This is particularly the case if the symptoms have a sudden onset. When the doctor says that there is no organic abnormality and that the symptoms are functional, the statement covers a range of aetiology from deliberate invention to symptoms which are outside the patient’s control, as for example hiccoughs, cramps or extrasystoles. Although these symptoms must have a cause, we commonly do not know what it is, and there are no pathological changes which we recognise. The symptoms will not “harm” the patient in that they do not alter his expectation of life nor his power to enjoy it. This latter is not a very sharp endpoint, and is to a large extent a matter of opinion. Headaches are a good example. Almost everyone has the occasional headache, and that cannot be regarded as a disease. If, however, the same mechanism causes daily or weekly headaches, it may be disturbing enough to rank as a disease.
Headache is a useful example to give to patients with other symptoms. They can accept that the pain that they get in the chest or in the abdomen is analogous to the occasional headache. This implies that it is real and not due to neurosis or imagination, but that it is not a cause for alarm and that the mechanism is not known for certain. The occasional headache is one of the few “functional” symptoms that almost everyone can accept without demur. Patients do not like the concept that the symptom is imaginary or the result of neurosis, and in fact it is much more commonly the result of minor abuses of the body. People expect a headache if they take too much alcohol, or pain in the legs after unaccustomed running or horse riding, and most functional symptoms are due to this sort of abuse, or to bad habits. Faulty chewing or posture, overeating, straining at stool, irregular bowel habits, or mechanically inappropriate ways of carrying things, together with the disuse atrophy of chronically under-used muscles, are the causes of most function disorders which do not have an obvious, pathological basis.
Another class of disease which might reasonably be included in the category of “functional” are the diseases of excessive response to internal or external stimuli. Asthma, migraine, vaso-vagal attacks and palpitation often have no “cause” which can be identified, save that they are precipitated by factors which do not cause those symptoms in “normal” people. In some cases we can demonstrate that the mechanism concerned, although normal from the anatomical point of view, is unduly responsive, and then the disorder of function itself can be considered as a disease. These disorders of function are so common that they do not carry the stigma in the patient’s mind which other functional symptoms carry. It is a pity that these different sorts of functional ailments are not given different names.
Some patients with symptoms which occur in paroxysms ask why the attacks come out of the blue, at random times. The answer that they are precipitated by independent circadian variations in one or more of his biochemical systems which summate to produce a stimulus which triggers an unusually sensitive end-organ, never seems to give much satisfaction even when it is translated into English. The mechanism of such paroxysms is fascinating to both doctor and patient, and many patients spend a great deal of time speculating, and altering their way of life to avert the attacks. In most cases they are forced to the conclusion that the attacks are random; in my experience the “explanation” that “it is just one of those things” seems to be as acceptable as the biochemical one.
Both functional and organic disease may be minor in degree. The patient may have symptoms which are not sufficiently troublesome to warrant treatment. A firm diagnosis may be impossible without a number of investigations which may involve risk or discomfort which is out of proportion to the severity of the symptoms. After appropriate examination, the mature clinician will not be ashamed to tell the patient that he does not know what the diagnosis is, but that he is sure that it is not serious and will not shorten his life nor affect its quality enough to warrant investigation or treatment. I learned from Mike Matthews that such patients are helped to accept the symptoms if you explain that the brain acts as an “editor.” When asked, it will tell you that there is a pressure of clothes upon your shoulder, but normally these signals are “edited out.” Similarly an alerted brain will “edit in” and give undue amplification to a minor signal.
The relatives of patients with serious diseases are often unduly worried that they too may have the disease, and the patients themselves wonder whether they may transmit the disease to their offspring. In some diseases where chromosomal abnormalities occur, the inheritance probabilities have been fully worked out and in these diseases professional genetic counselling is helpful. In the other congenital abnormalities or diseases which have some tendency to run in families, the patient should be told that although the risk is higher than for the average person, it is still extremely small. Some patients come from families with strong histories of diseases like perforating peptic ulcer or cardiac infarction. It is worthwhile pointing out to these patients that, as so many factors are involved in producing the disease, their chance of having inherited it is no greater than their chance of exact physical resemblance to their parents and siblings.
Patients often have fears about the implications of their symptoms which take the doctor by surprise until he has some experience. These fears often originate from “folklore” and many of them were once grounded in fact, but therapeutic advances have made them no longer justifiable. Haemoptysis, which used to mean consumption and death, is still disproportionately worrying, even though the modern treatment of tuberculosis is effective, and usually requires no change in the way of life. Tinnitus makes people fear that it is caused by a neoplasm; palpitation gives rise to thoughts of sudden death; arthritis conjures up the phrase “crippled with. . . .” People think that if shingles meets in the middle of the body, the patient will die. All these fears and many more have to be brought out into the open. In Dr. J. N. Blau’s memorable phrase, the physician must “Ferret out the fear,” and the patient has to be disabused of his belief. Once that is achieved, the symptom itself seems to lessen in intensity. A patient who has been unable to sleep because of tinnitus finds that following examination and proper reassurance that it is not due to a cerebral neoplasm, his insomnia goes.
Two different objectives are served by follow-up. The first is that the reassurance that the follow-up visit gives contributes to the treatment; secondly it enables the clinician to assess the patient’s progress. Patients should not be seen too frequently because it makes them think that they are more ill than they actually are. Over-attendance may induce a feeling of dependence on the doctor which is inappropriate to the severity of the illness. The doctor’s time is better spent on those patients who need him. The date of the follow-up visit is determined by the nature of the disease, and if you decide that you should see the patient in three months, it is quite useful to ask yourself whether it would make any difference to the patient if you had decided on four months instead. If not, opt for the later date. Whenever possible, the time between successive consultations should be increased, because patients deduce from this that they are making satisfactory progress. The clinician should make it quite clear whether or not he wishes to see the patient again, and if not, he should give his reasons.
The second objective of follow-up is to educate the clinician. Follow-up serves to evaluate diagnosis, judgement and therapy, and to teach the natural history of disease. Theoretically all patients should be seen again at intervals even if the clinician is sure that they are normal, but this would overload the clinic and would impair the efficacy of reassurance and induce neurosis. In practice, the element of self-education should be taken into account when deciding on the timing of the next visit. To achieve both of these objectives, it is important to find out why a patient has failed to keep a follow-up appointment, and whenever possible, to induce him to make another.
Patients get relief from the concept that their condition is common, and when their disease is serious, they are relieved to hear that it is not only common, but easily treated or not a threat to life. They are delighted to hear that in their case the disease is “slight” or “mild” and has a better than average prognosis. If the disease is mutilating, or has a poor prognosis, there is almost always some well-known person who has gone on to live a full life after such an illness, and you should quote these people to the patient. Whenever possible you should arrange for the patient to talk to someone who is successfully coping with the same disease. This is enormously encouraging, and is one of the strengths of the Patients’ Associations. If a disease is limiting, like angina, patients may find it more acceptable if they think of it as a nuisance rather than as a threat, and they find consolation in the concept that “worse things happen at sea.” Patients who were previously extremely fit and have had little or no experience of disease resent the fact that their body “has let them down,” and need more reassurance than those who are used to illness.
This hackneyed expression gives rise to a great deal of unhappiness. Although the doctor may be advising adaptation, patients usually think that he means acceptance. People adjust to most disabilities, so adaptation rather than acceptance should be the keynote of your advice. The doctor may be able to help with advice and the patient should be encouraged to devise his own adaptations.
This dreadful expression conjures up visions of the home for incurables in the patient’s mind. The doctor usually means that there are no more medicines or special measures which will help the patient, or which are necessary or justifiable. This is a faulty estimate of the situation, because there is always reassurance, re-education, encouragement and adaptation. Even on the rare occasions when the estimate is accurate, the words themselves should be avoided. Rather, the patient who knows that he has a serious disease should be told that whatever difficulties arise, there will always be ways of helping. People associate disease with pain, and they are greatly relieved to hear that in their case, pain is unlikely. If it is likely, they are pleased to hear that it can and will be relieved.
If a patient is to lose a limb or an organ, or is to have a serious operation, he will be more willing to accept that it has to be done if it is clear that everything else has been tried and has failed. If the symptoms are unpleasant, he will regard it with less horror than would a symptom-free person. The words a doctor uses to convey bad news are enormously important. If you say “I’m afraid that we have got to remove that leg” it sounds entirely negative. If you say “You would be better off without that leg” in a tone of voice which is considered, unequivocal, and indicates that you realise what this means to him, you plant a seed of hope that, in spite of the loss, his life will be better. There has to be appropriate bereavement for the loss of a limb, but hope is powerful displacement therapy. The patient may not know that one can lead a normal life without a kidney or a spleen or a lung, and he will be delighted to hear that one can. Colin Milburn played cricket for his county after losing an eye, and this information is as encouraging to the patient who is about to have an enucleation as it must be perplexing to the vision physiologists.
If a patient has done anything to help himself, particularly something which requires self-discipline, you should congratulate him. Even when the patient has played no role in his treatment, he will be delighted if you tell him how well he has done, and will proudly tell his family what you said.
It was formerly held that retirement should be put off at almost any cost because lack of occupation led to boredom and death. Whilst this may be true of work addicts, the health of many patients is dramatically improved when they give up boring, stressful or demanding jobs. This is particularly the case if they have other interests to cultivate.
You give the patient the advice which in your opinion will best suit him and it is his right to refuse that advice. His reasons for rejecting that advice must be examined with the same care that you gave to your diagnosis. So you must ask him what they are, before you show the slightest reaction. If his reasons are irrational, your response will depend on how important it is that he takes your advice. You should never be disapproving or exasperated, even though you have made a great effort, and spent a great deal of time thinking about him—time which is actually “wasted” because you could have devoted it to thinking about other patients. You “owe” the patient your full involvement from the moment he consults you, but he does not owe you his compliance with your advice. You may think he is foolish and you may be right. But you may also be wrong. Medical fashions are transitory, and doctors differ widely in their treatment of the same condition; when you compound that with the poor basic foundations on which your advice is based, its rejection should strike you as not at all surprising. Many doctors, knowing the poor quality of their advice, nevertheless get angry when it is rejected. This is bad doctoring. Acceptance or rejection of your advice should be taken in the same unemotional way.
A proper doctor never rejects a patient, although it is quite possible to ask a colleague to take over the treatment of a patient who is not benefiting from your advice, just as a physician would ask a surgical colleague to operate.
If the patient has varicose veins and refuses your advice to have them ligated, there is little in the way of harm or danger in leaving them as they are. If he goes on to get ulcers, they may prove refractory to treatment, even if he then has the veins tied. The existence and the incidence of such a complication, which is the hidden cost to the patient of ignoring your advice, must be made clear, but the risk of complications should not be used to coerce him. If, however, failure to treat now is certain or very likely to be harmful to the patient, you try to convince him to change his mind, not portentously and threateningly or admonishingly, but as one human being to another. You have your informed opinion, he has his views; is there any way of bringing the two together?
If you handle patients properly from the outset, your advice is unlikely to be rejected. You should regard rejection of your advice as a professional failure, and you should ask yourself where you slipped up. In your zeal to maintain a low failure rate, you may press too hard on the patient. This is always unsatisfactory: firstly because you are taking unfair advantage of him, secondly, because a patient must enter into the spirit of the therapy with enthusiasm if he is to derive full benefit from it, and thirdly because if the treatment is unsuccessful, both you and the patient will regret your having pushed him into it. You give advice unequivocally and firmly.
If you omitted to tell the patient at the outset that you give patients the same advice as you give to your family, you can tell him that when you sense that he may be going to reject the advice. You repeat the reasons for your advice, and stress the advantage of compliance. If you offer him time to think it over, you will avoid an outright rejection, which makes the patient feel that he has offended you. Some patients do not like being told what to do, and if you give them time, you give them the feeling that they are accepting your advice rather than your orders. Many doctors treat non-compliant patients as though they were intellectually subnormal children or ill-behaved pets. Just as a dog’s owner is the main determinant of its behaviour, so it is often the doctor’s fault if the patient will not take his advice.
Sensible patients may be overawed enough to take silly advice for a short period, but in the long term they are only prepared to take advice which seems to be appropriate. Though they know little about medicine, they have an innate sense of “making the punishment fit the crime.” If you tell a patient who has very little wrong with him that unless he goes to bed for six months you will not answer for the consequences, you may frighten him into bed. But after a day or two he will be up and about his business. Advice may not be taken because it does not suit the individual patient. Other patients appear to take the advice but do not act on it. Advice must be tailored to the individual patient. There is no point in giving advice which the patient is incapable of carrying out or unwilling to comply with. A patient may accept the fact that being overweight puts more strain on an arthritic knee joint, and that if he lost weight he would get less pain. But eating may be his greatest pleasure in life, and he may prefer to keep the pain rather than give up his favourite foods. Alternatively, he may not have enough self-control to diet.
Some patients reject advice because they have heard that the drug which you are prescribing is dangerous or has some untoward side effect. If this is the case and they tell you about it, you may have to work very hard to displace erroneous information, or to persuade them that the risk is worth taking. The patient may not understand the risk he runs in not taking the medicine, and he should be told that you prescribed it after having weighed up the risks and the advantages.
A patient may stop taking a drug because he knows that it is poisoning him. It pays to take notice of the patient’s intuitions in these matters. Non-compliance is the doctor’s best safeguard against appearance in the coroner’s court.
It does seem odd that a patient who actually takes the trouble to come and consult you and who decides that he trusts you enough to take your advice, should then need motivating if he is to keep on taking it. Man is not gifted at self-control and he has great difficulty in disciplining himself to do anything which he does not particularly want to do. This is especially true if it is long term or not enjoyable. The popularity of self-discipline has declined, and this has therapeutic implications. Persistence with treatment, perhaps for a whole lifetime, may require a good deal of self-discipline from people who have neither the training, the inclination nor the experience to exhibit it. If one is encouraged from birth to be self-indulgent, it is extraordinarily difficult to switch on self-control, particularly if one is being asked to give up something enjoyable. If a patient eats like a pig, smokes like a chimney or drinks like a fish, he may well be recommended to give up one or all of these habits. The doctor must be authoritative if this advice is to be taken and it is very doubtful if his authority is sufficient to make the patient give up the habits of a lifetime. It is even more difficult if the doctor is overweight, smells of whisky and has nicotine-stained fingers.
Many of my patients are overweight, and I give them a long talk about what can be summed up as “power to weight ratios,” and a diet sheet. If they fail to respond, I step up my talk to the “every pound you lose gives you an extra year of life” story. I gradually harden up my advice, through several more visits, until I reach the “digging your grave with your teeth” homily. Occasionally, obsessional patients strip off the weight with a remarkable effect on their symptoms and their well-being. But the majority stay about the same, and quite a substantial number actually put on weight. This experience is common, and addiction to food or alcohol or tobacco or idleness is difficult to treat. If you watch a patient as you urge him to exercise self-restraint you may see his face harden. This usually indicates that he is not going to take your advice.
Sometimes you can “use” the relatives in the patient’s best interest. If the spouse is present when the patient is given advice which calls for sustained self-discipline, it makes it more difficult for the patient to ignore it. If the spouse knows that the patient is to lose weight, or eat less salt, or take more or less exercise, or not climb ladders, the patient has to run the gauntlet of the spouse’s disapproval as well as his own conscience. This of course runs counter to my previous statement that the patient must be free to take your advice or leave it. Medicine, like life, is a matter of compromises, and it is not possible to practise good medicine without an element of paternalism or enlightened, well-intentioned persuasion.
One characteristic that all unorthodox forms of medicine have in common is that their claims to effectiveness have never been subjected to scientific evaluation. Enthusiasts for the methods, whether it be the suitability of whole foods for the whole man, or “nature’s way” or the wisdom of the East, accept their chosen method for reasons which do not seem to be adequate to the impartial observer. Many of the claims do seem to be ridiculous, but some could be real. It is likely, for example, that a pharmacology based on Eastern plants will have some medicaments which are as potent as morphine but which Western physicians have failed to take up. Similarly, the environment and way of life are now acknowledged to play a role in the aetiology of disease which would have been denied only fifty years ago. Our ignorance of aetiology and therapy should condition our reception of unorthodox ideas; they should be given proper consideration. A balance must be struck, for although it may be true that if the patient had led a different life more in accordance with “nature” he might have escaped his present illness, it is also true that now he has become ill, the clinician’s concern is to get him better. One may argue whether a neoplasm is due to nature or nurture, but it is certainly more “natural” than the surgery which will cure it. Nature does not always know best.
It is a mistake to belittle other sources of information, unless they are harmful, and you have to consider very carefully what is harmful and what is not. If the patient has been told that some diet or harmless preparation will do him good, it is therapeutic to say that it can do no harm. One should not fail to take advantage of a placebo effect simply because it is unorthodox, or because someone else thought of it. The profession is generally thought to be too orthodox, and patients like to think that their own doctor is broad-minded enough to give serious consideration to anything which might be beneficial. One can never be certain that diet or strange herbal remedies will not be effective; food allergies cause many symptoms, and morphine, digitalis and quinine are herbal remedies. The main danger of ineffective remedies is that they may put off the time when the patient seeks effective remedies. A school-friend of mine “treated” his haemoptysis for four months by smoking herbal cigarettes. So if your advice is sought about fringe medication, you must ensure that proper medication is taken too, if it is required.
Drugs come quite a long way down the list of the priorities in treatment. Therapy is traditionally stratified as rest, diet, hygiene (now rechristened lifestyle) and only then drugs, followed by special measures such as surgery. A large number, if not a majority of symptoms can be cured by attention to the first three categories alone.
Taking pills is boring; it imposes a discipline which the patient may resent, and as soon as he starts to feel a little better he tends to stop taking them. There is also the feeling that in taking pills, he is “sick” and not “healthy.” Taking pills is a constant reminder of mortality. The curious effect of disease on the mind has already been discussed in the chapter on history-taking, and it is no less evident when it comes to taking advice. In spite of the fact that the unpleasant symptoms are responding to therapy, without producing any side effect, some patients will stop taking the tablets. One or two of my patients have seemed to become fed up with taking pills, have stopped doing it, and died as a result; they seemed to me to know what they were doing. This book is not a suitable place for going into all the reasons for failure to comply with easy instructions, but they are manifold and the clinician has to take action against them.
Failure to take the medicines is much commoner than doctors realise, and if there is a failure of therapy, the patient should be closely questioned about the details of his drug regimen. Whenever possible drug levels in blood or urine or stool should be measured. Sometimes the tablets are being taken, but they are not absorbed. The ranges of bodyweight, degree of absorption, sensitivity to and excretion of drugs are astonishingly wide, and must be called into question if the patient fails to respond. The patient is titrated against drugs, using symptoms and signs as an indicator. Frequently, the “usual dose” is too small or too large.
Prophylaxis against non-compliance includes adequate explanation and motivation. The patient should be left in no doubt about the advantages of compliance. Further aids are simple instructions, giving the smallest number of different pills at regular intervals and, once therapy is established, reducing the number of pills by using combination tablets wherever that is possible. The doctor’s interest in the medication improves compliance, and each time the patient is seen he should be asked about his medication, and about side effects. Most drugs produce side effects, and when these are unpleasant, changes should be made in the timing or dosage of the medicaments in an attempt to palliate them. When alternative therapy is available, this should be substituted. The appearance of side effects puts another weight in the balance against treatment, and this new situation has to be reweighed.
As the patient recovers, and his symptoms disappear, the side effects loom larger than they did when he was ill. Getting up at night to pass urine is a joy when you know that it is a manifestation of the process which will cure your orthopnoea, but it is a nuisance if you are sleeping well. Whereas it may have been necessary to administer “round the clock” therapy when the patient was ill, this should be discontinued as soon as possible. Preoccupation with side effects, particularly if they are trivial, should be welcomed as a sign that the patient is getting better.
Groups like Alcoholics Anonymous, Weight Watchers, anti-smoking groups and exercise clubs can often maintain motivation by making people compete against each other, and also by giving support to each other.
Drugs which are no longer needed should be stopped. Sometimes the doctor is uncertain whether the symptoms will recur or not if a drug is stopped. If the symptoms are serious it is best to err on the safe side, and keep the patient on the drug, especially if there are no untoward side effects. If the recurrence of symptoms is without danger, it might be reasonable to reduce the dose or stop the medicine, keeping a close eye on the patient in case the symptoms recur.
Most people take a reasonable attitude towards drugs, realising that they are an integral part of treatment and that they vary from the innocuous to the dangerously potent. Two extreme views are met with, and the clinician must be ready to counter them.
As a result of the thalidomide disaster both the public and the medical and nursing professions have been made over-conscious of the side effects of drugs. Moribund patients are denied heroin because of the risk of addiction, and this very human overswing is responsible for a great deal of unnecessary pain and suffering. A patient may ask you if there are side effects to a drug or risks to a treatment. If you tell him that doing something and doing nothing both carry a risk and that the basis for your advice to him is that the risks of the treatment are less than the risks of doing nothing, that will almost always be enough. The realisation that all medicaments which are effective may produce adverse reactions has only just begun to be accepted by the general public, and this has led to an over-reaction against them. Some patients point out unequivocally that they “don’t like drugs,” and I tell them that I share this dislike.
Whilst one must guard against therapeutic nihilism, it is a mistake to prescribe any drug unless the advantages of taking it outweigh the risk, and only after the preceding elements of therapy have failed to relieve the symptoms. Drugs and other forms of active therapy are the last resort. If you explain this, most patients will understand that the disease process has resisted the vis medicatrix naturae, and that pills are necessary. It is best not to refer to medicines as drugs, because to many people the term connotes addictive drugs.
Some patients are so anxious about pills that this impairs the efficiency of the drugs which they are given. This effect varies with the drug. It is unlikely that the effect of antibiotics will be impaired if the patient is anxious. But drugs which work on hormones or on those organs which are affected by the patient’s psychological state, for example the alimentary system, the cardiovascular system and the nervous system, may lose some of their efficacy if the patient is obsessed by side effects.
Doctors too have been over-influenced by the publicity of side effects, and many patients are given inadequate dosage of drugs. Doctors who are over-influenced by fear of side effects give medicines without enthusiasm. The patient can see that the doctor is not entirely happy about the drug and he starts therapy without the positive placebo effect and with the anxieties mentioned above. When the drug is new, or is the subject of a clinical trial, the doctor’s reservations, warnings and lack of enthusiasm prejudice the effectiveness of the drug. Drugs should be presented with enthusiasm; “This medicine is very effective in this condition” or some such introduction initiates a cure before the patient has taken the first pill.
This form of introduction helps to counter the other form of extremism about drugs. Patients sometimes say “He only gave me some pills,” and this feeling may date from the days before the Second World War when so few medicaments were effective. The patient should be told that we now have very powerful drugs which are effective.
Whereas one should always be on the look out for interactions, one should not be unduly influenced by theoretical drug actions. “If we are already blocking sodium entry with drug A, adding drug B, which blocks calcium entry, will cause . . .” Our knowledge of the mechanism of drug action is so primitive that the postulated results rarely occur, and they should not stop us giving an additional drug where that drug is thought to be of value.
Some drugs—and the contraceptive pill is one of them—are issued with a list of side effects and dangers which is antitherapeutic. In the case of the contraceptive pill no mention is made of the incidence of each complication, so the list of disasters which may occur serves only to haunt the more sensitive user. With drugs which are designed to cure, the patient should be warned of those side effects and any likely side or toxic effects which may have to be accepted or which may be countered by a reduction of the dose. If disturbing side effects occur and the patient has not been warned, he may decide not to take the drug and it may be impossible to persuade him to re-start. In order to avoid this situation and to reduce the incidence of such side effects, initial dosage should, whenever conditions permit, always be small. The patient may be disappointed if this does not prove effective. He should be told that because the effective dose in any individual is unpredictable and because it is always better to take as little as is needed, you always start treatment with a small dose and that failure to respond to this may only mean that the dose has to be increased. It is my practice not to tell a patient about toxic effects which are rare or which he will not sense himself. If the drug may produce a leucopenia, then it is the clinician’s job to test for it, and nothing whatsoever is gained by telling the patient about the possibility, which had already been taken into account when the decision to administer the drug was reached.
Almost everyone realises that an overdose of most drugs will cause symptoms, and the patient will not be made apprehensive if you tell him that the dose for the individual patient is difficult to forecast and if you tell him what action to take if one of these symptoms develops.
The other side of the coin is that one is frequently asked to see patients who have “failed to respond to . . .,” and one finds that for reasons of weight, absorption, distribution, excretion or sensitivity, the usual dose was for them inadequate. The dose of a medicine of choice should be increased from the minimum effective level to the maximum tolerable level before the drug is abandoned as being ineffective. The recommended dose is usually the average dose, rather than the largest amount which may be given safely.
In those situations where the drug chosen stands quite a high chance of being ineffective or badly tolerated the patient should be told that there are many different drugs for his condition, and that it may be necessary to try several before one is found which suits him.
A patient may fail to respond to treatment or describe unusual side effects because he has been given the wrong drug. Pharmacists as a profession are remarkably efficient and rarely make mistakes. Indeed they are trained to check up on the prescriptions which they dispense. Dispensing errors may occur because the names of drugs are sometimes similar enough to be confused with each other. For example, chlorothiazide the diuretic, may be confused with chlormethiezole the hypnotic and anticonvulsant, especially when the handwriting is bad. Geoffrey Evans used to say “If you want your name to be well known, write it so people can read it” and he used to advise us to write legibly or print the names of drugs. As in the above example, it may be better to use the proprietary name (Saluric) if you are too busy to print the name.
A prevalent fallacy among both doctors and patients is that people ought to be told that they are going to die if only to “put their affairs in order.” This concept has a pretty, archaic ring about it, but does not stand up to examination. Most deaths are the result of cardiovascular disease or accident and hence most people die suddenly, without any forewarning. These people obviously do not have time to put their affairs in order. As sudden death is common, most men and women of affairs already have them in order. Little is gained by changing the handling you have decided on, in order to forewarn a patient, except the off-loading of responsibility. Many people cannot bring themselves to put their affairs in order for one reason or another. If the patient dies intestate, it does make more trouble for his family, but once again the patient’s interests take first place. He may want to spend part of his last days making arrangements for the distribution of his possessions, but he may not. In practical terms there are very few affairs of sufficient importance to the dying to make it worth while upsetting their last days.
Occasionally someone who has a limited future uses the time to do something which he has always had an ambition to do, but which he has put off for one practical reason or another. Theoretically, the knowledge that it is “now or never” very occasionally means that the patient would rather know the prognosis in order to be able to carry out his plan. This situation is extremely rare. Although one should bear it in mind, and respond to it if one knows it to be the case, it should not colour one’s advice to patients too much.
At the other extreme a patient with a fatal disease may not want his family to know that he is soon to die, either because he does not want to upset them, or because he cannot bear the effect this will have on their attitude towards him. One of the worst aspects of disease is other people’s solicitude. Their constant enquiries, fussing and covert glances to see if death is imminent, and their sorrow and pity, may be harder to bear than the disease itself. It is quite impossible to lead a normal life—which is the stated aim—if you become the target for all this unwanted attention. The patient may be sensible and balanced and the spouse may be unstable, so what you tell such a spouse should be guided by what the patient thinks would be suitable.
Sometimes relatives come and speak to the doctor or phone him up and ask questions. The doctor should bear in mind that what he says may find its way back to the patient. In their intense desire to do something for the patient, relatives sometimes blurt out “Well the doctor said . . .,” and the patient will recognise that the doctor did not say that while the relative was present. An erosion of confidence results when this happens. As such revelations are common, the doctor should not say anything to the relatives which the patient must not hear. It is best to tell the relatives only those things which the patient already knows. The doctor should tell the relatives that he will inform the patient of their conversation. If the relatives misquote the doctor to the patient, he may ask the doctor about it. If you have already told him about the talks with, or the calls from, the relatives, you can explain that they must have misunderstood what you told them at that time. If he challenges you, and you have not told him of the conversations, you then have to admit to private talks with the relatives. Your confession undermines your power base, and he wonders how much more there is to find out about your faithlessness.
Many patients, though, lean on their close family who give splendid support, and in these conditions the family may want to know things which the patient has not thought about, or which he has not been told. Once again, you must not satisfy the relatives at the patient’s expense. The contract between you and the patient is valid until he is dead. What you tell the relatives must be governed by the knowledge that what you say is very likely to get back to the patient. A secret is defined as something you tell nobody. Sometimes a change in the relatives’ manner will allow the patient to detect that some information has leaked.
A doctor may find relief in telling the relatives that the patient is doomed, as a result of an incurable disease. This excuses the failure to cure which, in the present over-expectant atmosphere, may have made the doctor feel that his performance is not up to standard. Incurable diseases present a challenge to the doctor but he must beware of either “trying anything” to show that he has left no stone unturned, or unloading his feelings of failure onto the patient or his relatives. The doctor’s task is to do everything that can be done, and not things that can’t. A good deal can be done to alleviate the physical and psychological effects of incurable disease and the anguish of relatives.
Relatives whose concern for the patient may have been shamefully inadequate during life, sometimes try and make up for twenty years of neglect by a last-minute endeavour. They may also put pressure on the doctor to do more tests and seek other opinions “to see if anything can be done.” Most doctors are optimists and they may succumb to the desire to try anything. It is difficult to resist this temptation, but the principle to bear in mind is that the patient should not be made to suffer to provide a clear conscience for the doctor or the relatives. The threshold of pain or discomfort is low in the elderly and infirm. Even a vital capacity breath may give rise to a sore chest.
Unexpected bereavement upsets the relatives, and they suffer less if they know in advance that the patient is going to die. Most people can see when a patient is deteriorating and the knowledge that he will die dawns on them gradually. This is preferable to the shock of being told. Some people have false hope which prevents them from seeing what is inevitable, and then and for other material reasons they may have to be told. The patient’s interests still come first, though, and duty to relatives is secondary.
A relative has to be told even more gently than the patient, because it is often easier to bear the thought of your own death than the death of someone you love. Furthermore, the patient may have had intimations of his death from the symptoms, and may even be glad that he is going to be free of them. The relatives have no such advance warning or compensation. Relatives should be given as much help as is possible, because they need it, and provided that the patient’s interests are kept in the forefront, little harm will be done. Serious disease may have a profound psychological effect on the relatives, and allowance must be made if they behave abnormally.
As with adults, the inaccuracy of prognosis and the small gain from pessimism means that the sensible doctor will be optimistic and will try to make whatever time the child has left as pleasant as possible. If you have made it clear to the parents that the disease will prove fatal, they are likely to ask how long you estimate the child will live. If you say that survival time is very variable and that “it could be years” and then say that we must all see that the years are as full and normal as possible, the relatives will derive satisfaction and hope.
In any one year, only about eight or nine patients on the “list” of a busy general practitioner will die. Most of these will die suddenly from vascular disease or accidents, and only one or two patients per annum will die in a way which demands long-term attention from the practitioner. In hospital practice too, such deaths are rarer than one would expect. The result of this is that few clinicians have enough experience of the varied aspects of terminal care to be able to ensure that the patient has a dignified death and that pain is controlled and consciousness is clear. Many problems, both in drug therapy and general management, arise in this situation. The available drugs are so different in their actions and in their suitability for the individual patient, that terminal care has become another speciality, like ophthalmology or radiotherapy, in which the generalist is unlikely to be competent.
Most doctors have accepted this situation, particularly once they have seen a patient who was confused and still in pain, transformed in twenty-four hours to become pain free and clear-minded. Some doctors nevertheless feel that they are best able to carry out terminal care. In the case of exceptionally gifted or well-trained clinicians, it is true that the doctor who has handled the patient from the beginning will know him best and will—other things being equal—be able to handle him best. Unfortunately, other things rarely are equal and some clinicians, in my opinion wrongly, feel that they are threatened by the implication that specialist help is needed. If terminal care units could be seen in the same light as are paediatric units, that is to say they are called in, without loss of face, by all sorts of other clinicians when they need help, the patients and their relatives would benefit.
Another great advantage that these units have is that they are often run by people with strong religious convictions. Many doctors do not possess these convictions, and thus they lose the assurance which most religions give, and which believers are able to transmit, that life is only a prelude to some better form of existence. I find it extremely difficult to regard death as anything but the end of everything, and this is an impediment when dealing with the dying, who are often more willing to believe in a hereafter when they are near death. I have observed agnostic patients, to whom I had been unable to give adequate comfort, dying almost joyfully after a conversation with a colleague who had strong convictions about life after death.
An agnostic can of course reassure a dying patient about the “course well run” if he knows enough about the patient. In practice one rarely knows how satisfying someone else’s life has been and even when one does, it can hardly offer the same sort of consolation as does religion.
Many doctors are embarrassed when talking about death to patients and it has been referred to as the last remaining taboo. The doctor may feel that if he knew more, the patient might not be dying, and this adds to his discomfiture. However, if the patient wants to talk about death it is wrong to deny him this opportunity. Of course the things which one can say about it are limited to the mechanics of the situation, but it is usually this aspect which the patient most wants to discuss. Patients frequently worry that death will be painful, and they need reassurance that it is usually not painful, and that any pain which may occur will be relieved.