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The Patient's Role: What Is It? Why? What Can the Doctor Do About It?
The Patient's Role: What Is It? Why? What Can the Doctor Do About It? EMILY MUMFORD, Ph.D.*
This society has an elaborate set of expectations around illness-how much should be done, who should help, how the help should be offered. There are great expectations for health, for "breakthroughs," for services, for improvements, and these expectations do bring some patients to the doctor in earlier stages of illness, do contribute to funding, do provide added impetus for medical research, for building facilities and programs. Public interest in health also lends prestige to the medical profession. But at the same time, these great expectations accelerate public demands, some unrealistic, and they also heighten tendency to criticism and ambivalence toward the medical profession. In one study, the people who gave physicians the highest prestige tended to show most ambivalence and express most criticism. 6 One of the consequences of the present definitions of illness is an array of expectations about rights and privileges of the sick person and who should perform certain services for him, and there are also some related ideas about what the sick person is supposed to do. Sociologists refer to this complex as the "patient's role" or the "sick role."ll Indeed, if the physician is to perform his role effectively, the patient must comply with at least some of the social prescriptions for the role of patient. The fact is, however, that as with any social role, not everyone conforms to all aspects adequately, and many persons may come more readily to accept the privilege parts of their role as patient than the obligation part. Thus the doctor may be asked to cure, to help, or to effect a change for the patient who does not know how he must play his role so the doctor can actually help him. Or knowing, the patient may not accept some of the doctor's expectations as legitimate. The work of general practice places the phYSician in a crucial position to cope with the special problems of compliance with medical advice, and to influence the patient so he will be able to respond in ways that contribute to the doctor-patient relationship. Much has been said about what the good doctor should bring to the relationship, perhaps too "Medical Sociologist and Assistant Professor of Psychiatry (Sociology), The Mount Sinai School of Medicine, New York, N.Y.
Medical Clinics of North America- Vo!. 51, No. 6, November, 1967
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little attention has been paid to what the patient must do, if the doctor is to be effective. "Relationship" implies two people responding appropriately. If each partner acts on a different set of premises, even the best efforts of one may be subverted. Part of the role of physician in this society is to act as the technically competent authority for the patient. This implies that not everybody's impression of what is wrong and what should be done is equally relevant. It implies the patient's responsibility to cooperate with the authority, and to trust that authority. In more cases than may seem apparent, it also implies that it is up to the physician to define the situation for the patient - to see that the patient plays his role so the physician can help medically. More than academic interest leads to consideration of some of the details of the patient's role as it is generally elaborated in this society. The physician who attends to what he expects of the patient- and helps the patient know and accept this - has the best chances of treating patients who cooperate in their part of the relationship. Our contemporary concept of sickness includes belief that the condition entitles one to a temporary privileged position. The ill person is given the right to be dependent, even though he is an adult, and the right to expect help from strangers - particularly the professionals. When the medical professional legitimates a condition as illness, the person may be excused from normal obligations-in a sense he is "not responsible." This is made explicit in public and legal debates over what should be done - punishment or treatment. That is, when he is "sick," he is entitled to treatment, "he can't help it." The student can stay home from school without being truant if his parent or a medical authority writes that he is "sick." The father can stay home from work because he is sick. The busy executive may allow himself a vacation if the doctor orders it. Mother's flare-up of temper may be excused because she "has a sick headache." Some extension of willingness to excuse people for sickness expresses itself in union contracts and in some company policies that allow a specified number of sick days each year. The right to be sick is implied both legally and informally. However, the position of the sick person in our current middle class concept is not just one of privilege and exemption. The one who demands time out and who is supposed to be entitled to care and special attention is expected to conform to the following other aspects of the patient role. He is supposed to want to get well. "Crock," "malingering," etc., suggest disapproval of the individual who seems not to play this part of the role. If we didn't expect patients to prefer their normal routines to the sick role, and if we did not back up this expectation with social pressures, we might see many more people effectively tempted to enjoy all the special privileges of the sick without suffering the disadvantages. Should this happen on large scale, the rest of us might be heavily burdened by the weight of our own responsibilities plus those of a large new "privileged class," the sick. Moreover, if no one were willing to accept the obligations of the patient role, doctors would be unable to function as they presently do. Also, our concept of sickness is that it happens to the person and
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IT? WHY? WHAT CAN THE DOCTOR Do?
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therefore we can't expect him to make himself well by sheer will power. He needs help. We assume that someone should help, and increasingly that someone is not just family and friends, but the specially designated professional. In most societies in history, special care of the sick has largely been assumed the proper responsibility of family, often also of religious authorities. Thus, the person who receives exemptions of the sick role today is supposed to seek technically competent help. He is supposed to believe that science and the medical profession can and will help him. We have an elaborate system of specialists trained to work with illness, and a whole network of regulations about work for which each profession, each specialty, is qualified. State and Federal laws set some limits on what each profession is allowed to do. Within the medical profession, members set still higher and more specific qualifications their members must meet to be ethically qualified to perform certain functions. In this context, the medical professional may be very annoyed if someone, who claims privileges of sickness, shops around for the advice he wants to follow. Going to inadequately trained persons who may promise easy and quick cures - the spiritualist, the nonmedical practitioner, the "quack" -is another example of defection from the patient role. Last, society expects the person who demands the privileges of sickness to cooperate with the technically competent authority he has consulted. The term "medical orders" implies obligation of the patient to comply, and it is true that, without some compliance from the patient, the physician may be thwarted in his attempts to help. The person who mistakenly thinks he is "not sick," and so will not follow physician's orders, and the one who complains he is sick but repeatedly fails to take medicine or follow prescribed regimen is a source of frustration within the health professions. So is the patient who changes medication, taking the nostrum that helped Aunt Mary so much. Such patients do not "play the game," do not conform to necessary requirements of the patient role. They interfere with the physician's ability to perform successfully. Performance in one social role is always influenced by the way the complementary role is played. With our elaborated notions of what can and should be done for the sick, caring for the sick within the home becomes increasingly disruptive, often stressful. It is not only that medical science has advanced so that the elaborate diagnostic and therapeutic services are beyond the capacity of the family. Care for the sick is in other ways beyond the capacity of the middle class family. This family is small, characterized by intense feeling spread over few people. There is no longer the variety of generations and relationships to absorb affection and anger, as well as to help out in crisis.lO The delicate balance of close feelings expected in the modern family makes it particularly vulnerable to disorder when one of the family's few members becomes ill and all our great expectations for helping the sick are added to the picture. Because the sick person is put in a special, privileged position, someone in the family will necessarily get less attention than he is used to - a little brother notices that his sister doesn't
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have to go to school, gets extra attention, special food. There is the possibility of social contagion. Some mothers have probably used castor oil to combat such contagion. It does take some of the luster from the patient role. It is possible that the tendency to remove the sick person to the hospital today may do more than provide him with bigger and better medical equipment and more highly specialized care. For some, not for all, this removal also dims some of the attraction of the sick role for other family members, and it often makes for less family stress. Thus there are social functions of hospitalization that go with the more obvious medical functions. It puts the patient in another context, in a sense emphasizing the temporary aspect of the position. It means that he does not have both the advantages of privilege from the patient role and at the same time the normal comforts of home. It also puts the patient in a context where the responsibilities of his role are confirmed. Beyond the mere obvious control over medication, the fact and process of admission, the hospital routine, the whole complex of medical personnel all tend to support expectations of the patient role. The physician who sees patients in his office thus has less outside assistance in defining the situation for the patient, and he is also exposed to more backwash from the family than when the patient is removed to the hospital. The structure of an office practice leaves much more up to the doctor in setting the stage for the doctor-patient exchange and for seeing that the patient does follow necessary advice. This may be one of the reasons why the interns and residents in some large university-affiliated hospitals have particularly difficult times when they are assigned to the out-patient service. Having been reinforced by hospital life, they are at first at a loss when first "on their own" in trying to define the situation with a patient. Studies of compliance with medical advice suggest that many patients either do not understand or do not accept some basic aspects of their role. Regardless of the variety of regimen prescribed, and the illness considered, at least one-third of the patients in most studies have failed to comply with medical orders.! The people who drop out from clinics, who do not appear for appointments, patients who sign out of the hospital against medical advice, like those who fail to take medications regularly or to follow a medical regimen - all can subvert the physician's best efforts. In one study of tuberculosis outpatients, 96 per cent of them said they were faithfully taking their prescribed medication. Physicians judged that 80 per cent of them were taking the medication as prescribed. But analysis of para-aminosalicylic acid and metabolites of isoniazid indicated that only a little over 70 per cent of the same patients had actually taken the drugs prescribed on the day of their clinic visit.!2 How many had failed to take the medication one or more days between visits is unknown. The physician may sometimes wonder why medication is not working, when in fact the patient is simply not taking it regularly. There is evidence that doctors generalIy may overestimate compliance of their patients. Half of 1000 children who had been examined at a pediatric clinic
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failed to get follow-up medical attention that their doctors had recommended. This was true in spite of the fact that mothers had originally gone to the trouble to bring their children for a check-up, and even though physicians in each case had talked with the mother about needed remedial care and immunization. 7 It seems unreasonable to expect that the physician must not only know what should be done, but also, then, must socialize the patient so he will accept and follow the well-considered advice. But the fact is that the doctor has to do these things in many cases. He can instill confidence in the patient. Beyond the subtle contribution that patient's confidence and faith can make toward therapeutic results, the acceptance of physician's authority is essential for necessary cooperation. Society gives the physician a mandate to influence his patients on behalf of their health. But the physician must often interpret this in ways the patient can understand and accept. Two conditions that contribute to acceptance of role responsibilities are understanding what the expectations are in some detail, and accepting them as fitting reasonably within one's life situation and values. It is important to note that the appearance of compliance-an "OK" from the patient, or a lack of questions after directions have been given-does not guarantee that the patient either actually understands, or actually accepts the rightness of medical advice. Even with prescriptions, the patient may misperceive the meaning of being placed on medication, or may have misleading ideas about what the medicine will do. Thinking he knows, the patient is not likely to ask questions. Orders that relate to work and activities of patients, and that require patient judgment, appear even less likely to be followed than are medication orders. 2 ,9 This may be influenced by two factors. First, family and friends sometimes feel more competent to advise patients about activities than about medications. Second, medical advice about activities may be less well understood by the patient than medication directions clearly stated and then typed out on the prescription label. Some failure to follow medical advice about activities reflects lack of comprehension of directions. "Cut down on activities" can mean very different limits to different people. When the physician asks, "Have you any questions?" and gets a "no questions" response, he may assume that the patient understands. However, as most teachers can attest, absence of questions may also signify that people do not understand enough to know what questions to ask. Questions imply awareness of what is left to be known. Some mothers in one clinic for handicapped children were proud of the fact they "always" followed medical recommendations and had "confidence in the doctors."" Yet most of these parents seemed unaware that they, too, had an active part to play in the treatment program. The purpose of various therapeutic measures and expected results of them were frequently not at all clear to them-even those who took such pride in following recommendations. Therefore, while they adhered to the letter of the last instructions, some were placing restrictions on their children which were actually outdated and, at least, not beneficial. In
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one sense, if the physician does not take pains to listen and ask so he can know what the patient's perceptions are, he deprives that patient of his right to be dependent on the physician-authority. Beyond that, the physician may miss his chance to enlist the effective cooperation of the patient in their alliance to restore his health. The diabetic patient, particularly the juvenile or adolescent, possibly offers the most visible and dramatic evidence of need for the physician to make sure that the patient accepts, intellectually and emotionally, the reasons for medical regimen in terms he can accept. It also highlights the importance of physician's understanding of social and emotional factors of illness for the family group. The general practitioner is in an especially advantaged position to cope effectively with these patients because he has experience working with the ambulatory patient and dealing with the special problems that come from care of illness in the home. He is often aware that diets can become a battleground between the child and his family. One physician stated, "The control of the diabetic youngster is to a large measure evidence of the success of the physician. It is not always easy for the physician to face the fact that this control is not going perfectly well."!:l Diabetic patients who have more knowledge of their disease and the reasons for a regimen seem most likely to carry out recommended therapy well. Though even most careful adherence to a regimen does not guarantee control, it does place more control of therapy under the physician's direction. 17 Yet, the percentage of diabetic children and their parents who can correctly answer basic questions on diabetes appears small." A ten-year-old girl who regularly appeared for her clinic appointments invariably brought in excellent urine charts. One day she appeared for examination. When the doctor asked for her urine chart, she started to hand it over, then abruptly pulled it back. "Oh, no, that's next week's chart."3 It is possible for the patient to feel he is complying, and for the doctor to share the illusion, unless he takes time to find out what the patient thinks he is doing, and why he thinks he is doing it. Over half of one sample of adult diabetic patients either misunderstood dosage or were checking the wrong calibration on their syringes. 16 It is not simply that more time is needed to educate patient and family about the reasons for the need of a daily regimen. It is more important that the information be timely. It is also not simply that more information should be given. It is rather that information be given more in terms of the patient's daily life. One study found that the amount of time physicians spent talking to patients did not relate to whether the patient complied adequately with medical advice. Some physicians have pointed to the fact that parents, upon first learning their child has diabetes, do not seem to hear explanations and directions they are given. For these, the physician's careful directions may have to be repeated-or saved for a time when the family or patient can listen. What matters is that the physician must take time to listen to the patient to determine how much information he can absorb at the time, what he does and does not understand, and what are the realities of his daily life, and his
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perceptions. Follow-up to reinforce the need for a regimen and to allow correction of misperception or misapplication is also important. The physician who knows something of the life situation of the patient-his eating habits, schedule, and the things that matter to himcan make recommendations from reality of the patient's life, and these orders have good chance of seeming right and authoritative. For example, the adolescent in our society does not like to stand apart from his peers, and medical directions to him that take no account of this are likely to seem unreasonable, and ones he will rebel against. A series of follow-up studies out of a psychiatric outpatient clinic illustrates what can be done to influence patients' cooperation in therapy. "During the last several years our studies in psychotherapy, placebo, and follow-up had provided increasing evidence that certain factors other than personality variables and diagnostic categories appear to influence therapy and outcome of psychoneurotic patients seen in short-term outpatient clinic treatment."14 Following this direction, the research team instituted a move toward "anticipatory socialization for the patient role." That is, they consciously attempted in a first interview to provide a simple, systematic explanation of what the patient should eKpect, and what the doctor and clinic expected of the patient. They found: " ... patients who received this interview improved significantly more than a control group, and their (clinic) attendance was significantly better."'5 Other studies of drop-outs from psychiatric clinics also suggest that the personality characteristics of the individuals, or their social position, or even their need for help, does not predict accurately whether they will stay or drop out. How well the patients' expectancies fit with their experience on first or second visit seems to be a much more important factor, and these expectations can be influenced by the physician. 4 Other studies are beginning to find that the nature of the doctorpatient relationship does make a difference, and that the first meeting between patient and physician may be the most significant one for the physician to establish his leadership role. Much has been written on the molding power of first impressions. In a medical outpatient clinic 37 per cent of the patients disregarded what their doctors advised. These tended to be patients who had been a partner in an initial doctor-patient exchange where the doctor did not establish himself as the authority, and the doctor and patient held different definitions of the basis of exchange. 2 If the doctor, whether in psychiatry, general practice, or internal medicine, does not find out how the patient perceives the situation, chances are relatively slim that the doctor will be able to move the patient toward definitions that work in behalf of the relationship. There is good evidence that values and basic perspectives are slower to change than behaviors, styles, dress, language. If this is true, then it may be that the physician is more likely to socialize the patient effectively by recognizing the patient's perspectives and working from them. For example, many patients from the unskilled occupations seem remarkably unaware of their own future as a reality that is in any way subject to influence from their own actions. For these patients the rational
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argument about future implications of present actions may be less effective than specifics of the immediate situation. The physician has the authority of his social position and the "halo effect" of his medical knowledge to help him in leading the patient to necessary compliance. However, he often needs more than the authority of title and knowledge; he must also establish leadership through making recommendations that can be accepted and followed. In any social exchange, when the leader is out of touch with important acts, attitudes, and problems of persons he would influence, he may lead, but people aren't following. Successful management of patients rests not only on the doctor's ability to diagnose and prescribe, but also on his ability to define the situation for the patient to allow best chances that the medical advice will be accepted as right, authoritative, and reasonable within the comprehension and social situation of the patient.
REFERENCES 1. Davis, M. S.: Variations in patients' compliance with doctors' orders: Analysis of congruence between survey responses and results of empirical investigations. J. Med. Education 41 :1037-1048,1966. 2. Davis, M. S.: Variations in patients' compliance with doctors' advice: An empirical analysis of patterns of communication. Paper presented at the 94th Annual Meeting of the American Public Health Association, San Francisco, November, 1966. Mimeographed. 3. Dolger, H., and Seeman, B.: How to Live with Diabetes. New York, Pyramid Books, 1958, p. 144. 4. Eiduson, B. T.: Retreat from help. Am. J. Orthopsychiat. 37:268,1967. 5. Etzwiler, D. D., and Sines, L. K.: Juvenile diabetes and its management: Family, social, and academic implications. J.A.M.A. 181:304-308, 1962. 6. Gamson, W. A., and Schuman, H.: Some undercurrents in the prestige of physicians. Am. J. Sociol. 68:463-470, 1963. 7. Hardy, M. C.: Follow-up of medical recommendations. J.A.M.A. 136:20-27, 1948. 8. Hodes, H. L., Siffert, R. S., and Young, A. T. (Supervisor, Department of Social Service): A Coordinated Program for Out-Patient Care of Handicapped Children. Final Report to the Health Research Council of the City of New York, Mt. Sinai Hospital, New York, Mimeographed, 1967. 9. Johannsen, W. J., Hellmuth, G. A., and Sorauf, T.: On accepting medical recommendations-Experiences with patients in a cardiac work classification unit. Arch. Environmental Health 12:63-69, 1966. 10. Mumford, E., and Skipper, J. K., Jr.: Sociology in Hospital Care. New York, Harper & Row, 1967. 11. Parsons, Talcott: Definitions of health and illness in the light of American values and social structure. In Patients, Physicians, and Illness (Gartly Jaco, Ed.). Glencoe, Ill., The Free Press, 1958, pp. 165-187. 12. Preston, D. F., and Miller, F. J.: The tuberculosis outpatients' defection from therapy. Am. J. Med. Sc. 247:55-58, 1964. 13. Ross, D.: Discussion of a workshop in T. S. Danowski, A. Krosnic, and H. C. Knowles (Eds.): Juvenile Diabetes: Adjustment and Emotional Problems. Proceedings of a Workshop held at Princeton, New Jersey, April 22-23, 1963, p. 108. 14. Stone, A. R., Frank, J. D., Saric, R. H., Imber, S. D., and Nash, E. H.: Some situational factors associated with response to psychotherapy. Am. J. Orthopsychiat. 35:682, 1965. 15. Ibid., p. 684. 16. Watkins, J. D., Williams, T. F., Martin, D. A., Hogan, M. D., and Anderson, E.: A study of diabetic patients at home. Am. J. Public Health 57:452-457,1967. 17. Williams, T. F., Martin, D. A., Hogan, M. D., Watkins, J. D., and Ellis, E. V.: The clinical picture of diabetic control, studied in four settings. Am. J. Public Health 57:441-451, 1967. Department of Psychiatry The Mount Sinai School of Medicine 100th Street and Fifth Avenue New York, N.Y. 10029
This society has an elaborate set of expectations around illness-how much should be done, who should help, how the help should be offered. There are great expectations for health, for "breakthroughs," for services, for improvements, and these expectations do bring some patients to the doctor in earlier stages of illness, do contribute to funding, do provide added impetus for medical research, for building facilities and programs. Public interest in health also lends prestige to the medical profession. But at the same time, these great expectations accelerate public demands, some unrealistic, and they also heighten tendency to criticism and ambivalence toward the medical profession. In one study, the people who gave physicians the highest prestige tended to show most ambivalence and express most criticism. 6 One of the consequences of the present definitions of illness is an array of expectations about rights and privileges of the sick person and who should perform certain services for him, and there are also some related ideas about what the sick person is supposed to do. Sociologists refer to this complex as the "patient's role" or the "sick role."ll Indeed, if the physician is to perform his role effectively, the patient must comply with at least some of the social prescriptions for the role of patient. The fact is, however, that as with any social role, not everyone conforms to all aspects adequately, and many persons may come more readily to accept the privilege parts of their role as patient than the obligation part. Thus the doctor may be asked to cure, to help, or to effect a change for the patient who does not know how he must play his role so the doctor can actually help him. Or knowing, the patient may not accept some of the doctor's expectations as legitimate. The work of general practice places the phYSician in a crucial position to cope with the special problems of compliance with medical advice, and to influence the patient so he will be able to respond in ways that contribute to the doctor-patient relationship. Much has been said about what the good doctor should bring to the relationship, perhaps too "Medical Sociologist and Assistant Professor of Psychiatry (Sociology), The Mount Sinai School of Medicine, New York, N.Y.
Medical Clinics of North America- Vo!. 51, No. 6, November, 1967
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little attention has been paid to what the patient must do, if the doctor is to be effective. "Relationship" implies two people responding appropriately. If each partner acts on a different set of premises, even the best efforts of one may be subverted. Part of the role of physician in this society is to act as the technically competent authority for the patient. This implies that not everybody's impression of what is wrong and what should be done is equally relevant. It implies the patient's responsibility to cooperate with the authority, and to trust that authority. In more cases than may seem apparent, it also implies that it is up to the physician to define the situation for the patient - to see that the patient plays his role so the physician can help medically. More than academic interest leads to consideration of some of the details of the patient's role as it is generally elaborated in this society. The physician who attends to what he expects of the patient- and helps the patient know and accept this - has the best chances of treating patients who cooperate in their part of the relationship. Our contemporary concept of sickness includes belief that the condition entitles one to a temporary privileged position. The ill person is given the right to be dependent, even though he is an adult, and the right to expect help from strangers - particularly the professionals. When the medical professional legitimates a condition as illness, the person may be excused from normal obligations-in a sense he is "not responsible." This is made explicit in public and legal debates over what should be done - punishment or treatment. That is, when he is "sick," he is entitled to treatment, "he can't help it." The student can stay home from school without being truant if his parent or a medical authority writes that he is "sick." The father can stay home from work because he is sick. The busy executive may allow himself a vacation if the doctor orders it. Mother's flare-up of temper may be excused because she "has a sick headache." Some extension of willingness to excuse people for sickness expresses itself in union contracts and in some company policies that allow a specified number of sick days each year. The right to be sick is implied both legally and informally. However, the position of the sick person in our current middle class concept is not just one of privilege and exemption. The one who demands time out and who is supposed to be entitled to care and special attention is expected to conform to the following other aspects of the patient role. He is supposed to want to get well. "Crock," "malingering," etc., suggest disapproval of the individual who seems not to play this part of the role. If we didn't expect patients to prefer their normal routines to the sick role, and if we did not back up this expectation with social pressures, we might see many more people effectively tempted to enjoy all the special privileges of the sick without suffering the disadvantages. Should this happen on large scale, the rest of us might be heavily burdened by the weight of our own responsibilities plus those of a large new "privileged class," the sick. Moreover, if no one were willing to accept the obligations of the patient role, doctors would be unable to function as they presently do. Also, our concept of sickness is that it happens to the person and
THE PATIENT'S ROLE: WHAT
Is
IT? WHY? WHAT CAN THE DOCTOR Do?
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therefore we can't expect him to make himself well by sheer will power. He needs help. We assume that someone should help, and increasingly that someone is not just family and friends, but the specially designated professional. In most societies in history, special care of the sick has largely been assumed the proper responsibility of family, often also of religious authorities. Thus, the person who receives exemptions of the sick role today is supposed to seek technically competent help. He is supposed to believe that science and the medical profession can and will help him. We have an elaborate system of specialists trained to work with illness, and a whole network of regulations about work for which each profession, each specialty, is qualified. State and Federal laws set some limits on what each profession is allowed to do. Within the medical profession, members set still higher and more specific qualifications their members must meet to be ethically qualified to perform certain functions. In this context, the medical professional may be very annoyed if someone, who claims privileges of sickness, shops around for the advice he wants to follow. Going to inadequately trained persons who may promise easy and quick cures - the spiritualist, the nonmedical practitioner, the "quack" -is another example of defection from the patient role. Last, society expects the person who demands the privileges of sickness to cooperate with the technically competent authority he has consulted. The term "medical orders" implies obligation of the patient to comply, and it is true that, without some compliance from the patient, the physician may be thwarted in his attempts to help. The person who mistakenly thinks he is "not sick," and so will not follow physician's orders, and the one who complains he is sick but repeatedly fails to take medicine or follow prescribed regimen is a source of frustration within the health professions. So is the patient who changes medication, taking the nostrum that helped Aunt Mary so much. Such patients do not "play the game," do not conform to necessary requirements of the patient role. They interfere with the physician's ability to perform successfully. Performance in one social role is always influenced by the way the complementary role is played. With our elaborated notions of what can and should be done for the sick, caring for the sick within the home becomes increasingly disruptive, often stressful. It is not only that medical science has advanced so that the elaborate diagnostic and therapeutic services are beyond the capacity of the family. Care for the sick is in other ways beyond the capacity of the middle class family. This family is small, characterized by intense feeling spread over few people. There is no longer the variety of generations and relationships to absorb affection and anger, as well as to help out in crisis.lO The delicate balance of close feelings expected in the modern family makes it particularly vulnerable to disorder when one of the family's few members becomes ill and all our great expectations for helping the sick are added to the picture. Because the sick person is put in a special, privileged position, someone in the family will necessarily get less attention than he is used to - a little brother notices that his sister doesn't
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have to go to school, gets extra attention, special food. There is the possibility of social contagion. Some mothers have probably used castor oil to combat such contagion. It does take some of the luster from the patient role. It is possible that the tendency to remove the sick person to the hospital today may do more than provide him with bigger and better medical equipment and more highly specialized care. For some, not for all, this removal also dims some of the attraction of the sick role for other family members, and it often makes for less family stress. Thus there are social functions of hospitalization that go with the more obvious medical functions. It puts the patient in another context, in a sense emphasizing the temporary aspect of the position. It means that he does not have both the advantages of privilege from the patient role and at the same time the normal comforts of home. It also puts the patient in a context where the responsibilities of his role are confirmed. Beyond the mere obvious control over medication, the fact and process of admission, the hospital routine, the whole complex of medical personnel all tend to support expectations of the patient role. The physician who sees patients in his office thus has less outside assistance in defining the situation for the patient, and he is also exposed to more backwash from the family than when the patient is removed to the hospital. The structure of an office practice leaves much more up to the doctor in setting the stage for the doctor-patient exchange and for seeing that the patient does follow necessary advice. This may be one of the reasons why the interns and residents in some large university-affiliated hospitals have particularly difficult times when they are assigned to the out-patient service. Having been reinforced by hospital life, they are at first at a loss when first "on their own" in trying to define the situation with a patient. Studies of compliance with medical advice suggest that many patients either do not understand or do not accept some basic aspects of their role. Regardless of the variety of regimen prescribed, and the illness considered, at least one-third of the patients in most studies have failed to comply with medical orders.! The people who drop out from clinics, who do not appear for appointments, patients who sign out of the hospital against medical advice, like those who fail to take medications regularly or to follow a medical regimen - all can subvert the physician's best efforts. In one study of tuberculosis outpatients, 96 per cent of them said they were faithfully taking their prescribed medication. Physicians judged that 80 per cent of them were taking the medication as prescribed. But analysis of para-aminosalicylic acid and metabolites of isoniazid indicated that only a little over 70 per cent of the same patients had actually taken the drugs prescribed on the day of their clinic visit.!2 How many had failed to take the medication one or more days between visits is unknown. The physician may sometimes wonder why medication is not working, when in fact the patient is simply not taking it regularly. There is evidence that doctors generalIy may overestimate compliance of their patients. Half of 1000 children who had been examined at a pediatric clinic
THE PATIENT'S ROLE: WHAT Is IT? WHY? WHAT CAN THE DOCTOR Do?
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failed to get follow-up medical attention that their doctors had recommended. This was true in spite of the fact that mothers had originally gone to the trouble to bring their children for a check-up, and even though physicians in each case had talked with the mother about needed remedial care and immunization. 7 It seems unreasonable to expect that the physician must not only know what should be done, but also, then, must socialize the patient so he will accept and follow the well-considered advice. But the fact is that the doctor has to do these things in many cases. He can instill confidence in the patient. Beyond the subtle contribution that patient's confidence and faith can make toward therapeutic results, the acceptance of physician's authority is essential for necessary cooperation. Society gives the physician a mandate to influence his patients on behalf of their health. But the physician must often interpret this in ways the patient can understand and accept. Two conditions that contribute to acceptance of role responsibilities are understanding what the expectations are in some detail, and accepting them as fitting reasonably within one's life situation and values. It is important to note that the appearance of compliance-an "OK" from the patient, or a lack of questions after directions have been given-does not guarantee that the patient either actually understands, or actually accepts the rightness of medical advice. Even with prescriptions, the patient may misperceive the meaning of being placed on medication, or may have misleading ideas about what the medicine will do. Thinking he knows, the patient is not likely to ask questions. Orders that relate to work and activities of patients, and that require patient judgment, appear even less likely to be followed than are medication orders. 2 ,9 This may be influenced by two factors. First, family and friends sometimes feel more competent to advise patients about activities than about medications. Second, medical advice about activities may be less well understood by the patient than medication directions clearly stated and then typed out on the prescription label. Some failure to follow medical advice about activities reflects lack of comprehension of directions. "Cut down on activities" can mean very different limits to different people. When the physician asks, "Have you any questions?" and gets a "no questions" response, he may assume that the patient understands. However, as most teachers can attest, absence of questions may also signify that people do not understand enough to know what questions to ask. Questions imply awareness of what is left to be known. Some mothers in one clinic for handicapped children were proud of the fact they "always" followed medical recommendations and had "confidence in the doctors."" Yet most of these parents seemed unaware that they, too, had an active part to play in the treatment program. The purpose of various therapeutic measures and expected results of them were frequently not at all clear to them-even those who took such pride in following recommendations. Therefore, while they adhered to the letter of the last instructions, some were placing restrictions on their children which were actually outdated and, at least, not beneficial. In
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one sense, if the physician does not take pains to listen and ask so he can know what the patient's perceptions are, he deprives that patient of his right to be dependent on the physician-authority. Beyond that, the physician may miss his chance to enlist the effective cooperation of the patient in their alliance to restore his health. The diabetic patient, particularly the juvenile or adolescent, possibly offers the most visible and dramatic evidence of need for the physician to make sure that the patient accepts, intellectually and emotionally, the reasons for medical regimen in terms he can accept. It also highlights the importance of physician's understanding of social and emotional factors of illness for the family group. The general practitioner is in an especially advantaged position to cope effectively with these patients because he has experience working with the ambulatory patient and dealing with the special problems that come from care of illness in the home. He is often aware that diets can become a battleground between the child and his family. One physician stated, "The control of the diabetic youngster is to a large measure evidence of the success of the physician. It is not always easy for the physician to face the fact that this control is not going perfectly well."!:l Diabetic patients who have more knowledge of their disease and the reasons for a regimen seem most likely to carry out recommended therapy well. Though even most careful adherence to a regimen does not guarantee control, it does place more control of therapy under the physician's direction. 17 Yet, the percentage of diabetic children and their parents who can correctly answer basic questions on diabetes appears small." A ten-year-old girl who regularly appeared for her clinic appointments invariably brought in excellent urine charts. One day she appeared for examination. When the doctor asked for her urine chart, she started to hand it over, then abruptly pulled it back. "Oh, no, that's next week's chart."3 It is possible for the patient to feel he is complying, and for the doctor to share the illusion, unless he takes time to find out what the patient thinks he is doing, and why he thinks he is doing it. Over half of one sample of adult diabetic patients either misunderstood dosage or were checking the wrong calibration on their syringes. 16 It is not simply that more time is needed to educate patient and family about the reasons for the need of a daily regimen. It is more important that the information be timely. It is also not simply that more information should be given. It is rather that information be given more in terms of the patient's daily life. One study found that the amount of time physicians spent talking to patients did not relate to whether the patient complied adequately with medical advice. Some physicians have pointed to the fact that parents, upon first learning their child has diabetes, do not seem to hear explanations and directions they are given. For these, the physician's careful directions may have to be repeated-or saved for a time when the family or patient can listen. What matters is that the physician must take time to listen to the patient to determine how much information he can absorb at the time, what he does and does not understand, and what are the realities of his daily life, and his
THE PATIENT'S ROLE: WHAT Is IT? WHY? WHAT CAN THE DOCTOR Do?
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perceptions. Follow-up to reinforce the need for a regimen and to allow correction of misperception or misapplication is also important. The physician who knows something of the life situation of the patient-his eating habits, schedule, and the things that matter to himcan make recommendations from reality of the patient's life, and these orders have good chance of seeming right and authoritative. For example, the adolescent in our society does not like to stand apart from his peers, and medical directions to him that take no account of this are likely to seem unreasonable, and ones he will rebel against. A series of follow-up studies out of a psychiatric outpatient clinic illustrates what can be done to influence patients' cooperation in therapy. "During the last several years our studies in psychotherapy, placebo, and follow-up had provided increasing evidence that certain factors other than personality variables and diagnostic categories appear to influence therapy and outcome of psychoneurotic patients seen in short-term outpatient clinic treatment."14 Following this direction, the research team instituted a move toward "anticipatory socialization for the patient role." That is, they consciously attempted in a first interview to provide a simple, systematic explanation of what the patient should eKpect, and what the doctor and clinic expected of the patient. They found: " ... patients who received this interview improved significantly more than a control group, and their (clinic) attendance was significantly better."'5 Other studies of drop-outs from psychiatric clinics also suggest that the personality characteristics of the individuals, or their social position, or even their need for help, does not predict accurately whether they will stay or drop out. How well the patients' expectancies fit with their experience on first or second visit seems to be a much more important factor, and these expectations can be influenced by the physician. 4 Other studies are beginning to find that the nature of the doctorpatient relationship does make a difference, and that the first meeting between patient and physician may be the most significant one for the physician to establish his leadership role. Much has been written on the molding power of first impressions. In a medical outpatient clinic 37 per cent of the patients disregarded what their doctors advised. These tended to be patients who had been a partner in an initial doctor-patient exchange where the doctor did not establish himself as the authority, and the doctor and patient held different definitions of the basis of exchange. 2 If the doctor, whether in psychiatry, general practice, or internal medicine, does not find out how the patient perceives the situation, chances are relatively slim that the doctor will be able to move the patient toward definitions that work in behalf of the relationship. There is good evidence that values and basic perspectives are slower to change than behaviors, styles, dress, language. If this is true, then it may be that the physician is more likely to socialize the patient effectively by recognizing the patient's perspectives and working from them. For example, many patients from the unskilled occupations seem remarkably unaware of their own future as a reality that is in any way subject to influence from their own actions. For these patients the rational
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argument about future implications of present actions may be less effective than specifics of the immediate situation. The physician has the authority of his social position and the "halo effect" of his medical knowledge to help him in leading the patient to necessary compliance. However, he often needs more than the authority of title and knowledge; he must also establish leadership through making recommendations that can be accepted and followed. In any social exchange, when the leader is out of touch with important acts, attitudes, and problems of persons he would influence, he may lead, but people aren't following. Successful management of patients rests not only on the doctor's ability to diagnose and prescribe, but also on his ability to define the situation for the patient to allow best chances that the medical advice will be accepted as right, authoritative, and reasonable within the comprehension and social situation of the patient.
REFERENCES 1. Davis, M. S.: Variations in patients' compliance with doctors' orders: Analysis of congruence between survey responses and results of empirical investigations. J. Med. Education 41 :1037-1048,1966. 2. Davis, M. S.: Variations in patients' compliance with doctors' advice: An empirical analysis of patterns of communication. Paper presented at the 94th Annual Meeting of the American Public Health Association, San Francisco, November, 1966. Mimeographed. 3. Dolger, H., and Seeman, B.: How to Live with Diabetes. New York, Pyramid Books, 1958, p. 144. 4. Eiduson, B. T.: Retreat from help. Am. J. Orthopsychiat. 37:268,1967. 5. Etzwiler, D. D., and Sines, L. K.: Juvenile diabetes and its management: Family, social, and academic implications. J.A.M.A. 181:304-308, 1962. 6. Gamson, W. A., and Schuman, H.: Some undercurrents in the prestige of physicians. Am. J. Sociol. 68:463-470, 1963. 7. Hardy, M. C.: Follow-up of medical recommendations. J.A.M.A. 136:20-27, 1948. 8. Hodes, H. L., Siffert, R. S., and Young, A. T. (Supervisor, Department of Social Service): A Coordinated Program for Out-Patient Care of Handicapped Children. Final Report to the Health Research Council of the City of New York, Mt. Sinai Hospital, New York, Mimeographed, 1967. 9. Johannsen, W. J., Hellmuth, G. A., and Sorauf, T.: On accepting medical recommendations-Experiences with patients in a cardiac work classification unit. Arch. Environmental Health 12:63-69, 1966. 10. Mumford, E., and Skipper, J. K., Jr.: Sociology in Hospital Care. New York, Harper & Row, 1967. 11. Parsons, Talcott: Definitions of health and illness in the light of American values and social structure. In Patients, Physicians, and Illness (Gartly Jaco, Ed.). Glencoe, Ill., The Free Press, 1958, pp. 165-187. 12. Preston, D. F., and Miller, F. J.: The tuberculosis outpatients' defection from therapy. Am. J. Med. Sc. 247:55-58, 1964. 13. Ross, D.: Discussion of a workshop in T. S. Danowski, A. Krosnic, and H. C. Knowles (Eds.): Juvenile Diabetes: Adjustment and Emotional Problems. Proceedings of a Workshop held at Princeton, New Jersey, April 22-23, 1963, p. 108. 14. Stone, A. R., Frank, J. D., Saric, R. H., Imber, S. D., and Nash, E. H.: Some situational factors associated with response to psychotherapy. Am. J. Orthopsychiat. 35:682, 1965. 15. Ibid., p. 684. 16. Watkins, J. D., Williams, T. F., Martin, D. A., Hogan, M. D., and Anderson, E.: A study of diabetic patients at home. Am. J. Public Health 57:452-457,1967. 17. Williams, T. F., Martin, D. A., Hogan, M. D., Watkins, J. D., and Ellis, E. V.: The clinical picture of diabetic control, studied in four settings. Am. J. Public Health 57:441-451, 1967. Department of Psychiatry The Mount Sinai School of Medicine 100th Street and Fifth Avenue New York, N.Y. 10029