Chronic disease: the sick role and informed consent

CHARLES W. LIDZ, ALAN MEISEL, AND MARK MUNETZ C H R O N I C D I S E A S E : T H E SICK R O L E A N D I N F O R M E D CONSENT Over the past quarter century, the doctrine of informed consent has gradually attained preeminence among legal scholars, judges, and ethicists as specifying the legally and ethically acceptable manner by which decisions about health care should be made (Meisel et al. 1977, President's Commission 1982). The doctrine seeks to promote autonomous and rational decisions by patients about their treatment. While seeking to encourage collaborative decisionmaking between patient and caregivers, the law has reiterated and reinforced the right of the competent patient to make decisions about treatment and has placed on the physician the obligation to facilitate such decisions by disclosing to the patient all information that is relevant to the decision that the patient must make, such as the purpose, nature, risks, and benefits of, and alternatives to, the proposed treatment (Meisel 1979). Despite the acceptance that the doctrine has achieved in legal and ethical circles as a prescription for health care decisionmaking, it has received a far different reception among physicians, judging by both the theoretical and the empirical literature. Moreover, the actual conduct of decisionmaking does not seem to be quite what its legal and ethical proponents had envisioned (Katz 1977). Although some of it is methodologically dubious (Meisel and Roth 1981), a body of literature has developed in the last few years which shows that patients are often not told very much about their treatment (Lidz et al. 1984; Gray 1975) and do not understand very much of what they are told even when they do receive information (Leonard et al. 1972; Robinson and Merav 1976; McCollum and Schwartz 1969; Klatte et al. 1969; Garnham 1975). Moreover, much of the information that they recieve is given to them in such a way that it is almost incomprehensible (Golden and Johnston 1970; National Commission 1978; Grunder 1980; Morrow 1980; Epstein and Lasagna 1969; Morrow et al. 1978). From the perspective of the sociology of medicine, such findings are not surprising. As long ago as 1951, Talcott Parsons proposed that relations between doctor and patient were regulated in our society by a reciprocal set of expectations in which the patient is expected to cooperate with decisions that physicians make about restoring health in return for the physician's commitment to make the patient's health the primary goal of treatment decisions. If either patient or physician fails to live up to these expecations, negative sanctions should be forthcoming (Parsons 1951). If Parsons' model is correct, we should find that informed consent law should have a relatively small impact on the Culture, Medicine and Psychiatry 9 (1985), 241-255. 0165-005X/85.10 © 1985 by D. Reidel Publishing Company. 242 CHARLES W. LIDZ ET AL. doctor-patient relationship and be resented and/or treated as trivial by both physicians and patients because it seeks to change the decisionmaking structure of the relationships. Indeed the research findings so far suggest that this is precisely how most patients and physicians behave. In this paper, we will report some observations from a participant observation study conducted for the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (Lidz and Meisel 1982). These observations suggest that in those chronic incurable disorders which are viewed by both patients and their caregivers as properly managed only through the patient's active participation in the implementation of treatment, patients also take an active role in the decisionmaking. This role is typically accepted and even sometimes encouraged by the same care providers who do not encourage it with other patients. In these instances, patients and medical personnel accept the idea that patients should be informed and participate in making decisions about their treatment, as the doctrine of informed consent suggests that they should. RESEARCH METHODS AND SETTING The research was designed to learn about the role of informed consent in hospital routines and the role of patients in medical decisionmaking. Therefore, we followed the basic outline of participant observation methodology and chose the data gathering procedures which, in any given situation, least affected the interaction we were observing and which provided the necessary data (Denzin 1970). Thus observers sat and observed unobtrusively before participating in what they observed, listened to others talk in preference to asking questions, and asked questions in conversational contexts before using structured interviews. However, when passive procedures would not yield the necessary data, the observers did not hesitate to use more active ones. We studied two inpatient services - a medical cardiology service and a surgical service - and a surgical outpatient clinic; all were part of a medical school affiliated medical center. In each of the settings two observers, after obtaining the cooperation of the staff, spent several days observing the routine procedures, getting to know the staff, and becoming a routine part of the setting. During this period they took notes only sporadically and concentrated on the overall functioning of the services. After this period they began systematically to focus on aspects of staff and patient behavior related to the treatment decisionmaking process and to interview patients after each decision, using a semi-structured interview schedule) The observers were trained in speed-writing and took almost verbatim notes of all observed patient-staff interactions. A tape recorder was used for extended CHRONIC DISEASE: SICK ROLE/INFORMED CONSENT 243 interviews. The observers conducted in-depth tape recorded interviews of 101 patients including 43 in cardiology and 58 in surgery. Although many other patients were observed interacting with their physicians and nurses, this group of 101 patients constitute the core of the cases analyzed in this paper. A SUBGROUP OF CHRONIC PATIENTS Let us begin by defining a specific subgroup of chronic patients on whom we will focus special attention. These 15 patients constitute a mi'nority of the 33 who could be said to have been treated for a chronic disease. Four characteristics define this group. (1) They had medical problems that could be expected to continue for the foreseeable future. (2) While their problems could be managed medically, no simple procedure or treatment could produce a cure or complete remission of symptoms. (3) The management of their medical problem involved periodic active participation on their part beyond simply taking oral medication. (4) Both they and their physicians recognized these features of their cases. That is to say that these patients had chronic, incurable diseases that could be managed with their active cooperation and both they and their caregivers recognized this fact. Let us refer to them as active, incurable chronic patients. Without exception these patients were highly knowledgeable about their medical problems when compared to the other patients, z They asked more questions, volunteered more information, and were encouraged by the hospital staff to do so. They often volunteered opinions about proposed treatments and the staff gave them more information than other patients. While a few other patients scattered throughout the group of patients we interviewed were similarly involved in their treatment, this group was by far the largest. As can be seen from Table I, these patients were not particularly different from the other patients we interviewed. TABLE I Characteristics of Active Incurable Chronic Patients v. Others Active, Incurable, Chronics Others Age (% 30 yrs or younger) 25% 17% Sex (% Female) 63% 49% Race (% Black) 31% 25% Education (% Some college) 57% 42% 244 CHARLES W. LIDZ ET AL. Most of these patients were in renal dialysis, either hemodialysis or peritoneal dialysis, but they also included patients with arteriosclerosis, diabetes, cardiomyopathy, chronic bowel obstruction, and several other problems. We can best understand the behavior of these patients and their physicians by contrasting it to the behavior of patients and physicians surrounding acute diseases. ACUTE PATIENTS AND THEIR PHYSICIANS The acute patients whom we observed talking with their physicians generally took a quiet and deferential stance toward them. While some seemed characterologically more aggressive than others, almost without exception acutely ill patients expressed the view that they did not have anything to say about their treatment. Their physicians usually took a similar stance. The interaction between physicians and most patients whom we observed was overwhelmingly structured such that the physician asked for signs and symptoms and the patient provided them. Aside from greetings and jokes, that was all that was typically involved with acute cases. Physician disclosure about treatment was rare and brief. The following disclosure by a physician at the end of an admission workup on a 33-year-old man presenting with pleural effusion was typical. Physician: Okay, well, probably you've got a viral illness. We'll try to find out and take care of it, okay? Patient: Okay. Disclosures before surgery or invasive procedures were usually somewhat more substantial, since hospital rules required an "explanation" before consent. The following disclosure to a 23-year-old patient with gall stones the day before surgery is typical: Physician: We're going to make an incision and take out your gall bladder. We're also going to take an X-ray of your bowel and if there are any stones, we'll take them out too. If we do find some, it'll make the operation a little more complicated because we'll have to take them out. Then when you wake up, you'll find that you have a tube in your nose that will have to stay there for a few d a y s . . . The major risks of this operation is infection but of course we will cover you with antibiotics both before and after the operation. It ought to take about 2 hours. Patient: What about the tests (for possible hepatitis)? Physician: It was negative so probably you don't have any trouble with your liver. CHRONIC DISEASE: SICK ROLE/ INFORMED CONSENT 245 Such disclosure, of course, does not tell the patient enough to make any decision about surgery unless the patient profoundly trusts that the physician will make the right decision• Interviews with patients repeatedly showed profound areas of ignorance and little concern on the part of the patients about their lack of knowledge. Typically, decisionmaking was seen as the physician's task. The following portions of an interview with a 56-year-old high school educated man who was brought in with a possible myocardial infarction are typical: Interviewer: What brought you into the hospital? The heart pains brought me here (pause). I forget what the name of Patient: that thing was (pause) but they told me it wasn't a heart a t t a c k . . . I stayed a few days, went home. Then I got sick again with another one. This time they found it was a heart attack . .. The medicine they've been giving me seems to be doing some good. What was your treatment? Interviewer: I don't know what the medicine was, but I do know I had the IV, Patient: • .. evidently it's got to be for the heart . . . I can't think of the name . . . [later in the interview[ the doctors seem to be all right. One thing, well, the main thing is believing in them . . . If I had a doctor, if I didn't believe in him I'd ask for a transfer. • . . While we observed a few isolated instances of acute patients in which both physicians and patients seemed interested in the patient's understanding the treatment and participating in the decision, in the overwhelming majority of cases both patients and physicians behaved as though they accepted Parson's model of the relationship• ACTIVE INCURABLE CHRONIC PATIENTS In contrast to the patients with acute problems, this group of patients with chronic disorders had a very good and active understanding of their treatment• These patients saw their disease as an essential feature of their lives and one that they wanted to have some say about• Perhaps because, in many cases, the disease and its treatment were a constant and continuous problem, they sought to gain some intellectual mastery over it. Consider the following interaction between Ms. A. G., a woman in her forties who was on peritoneal dialysis (which involved fluid transfers through a catheter placed surgically into the peritoneum) and the chief surgical resident who had been asked to see her on a consultative basis: Doctor: Hi, I ' m Dr. _ _ have peritonitis• . . . I do all the catheter work now. I hear you 246 Ms.A.G.: Doctor: Ms.A.G.: Doctor: Ms. A.G.: Doctor: Ms.A.G.: Doctor: Ms. A.G.: Doctor: Ms.A.G.: Doctor: Ms. A.G.: CHARLES W. LIDZ ET AL. Yes, I called it to their attention. The catheter keeps slipping in and out of me and I seem to have gotten an infection. Are you on home dialysis (beginning to inspect the catheter)? Yes. Can you touch this with your hands? Yes, I just washed them (continuing to inspect the incision). I think it probably is a hernia. (That is what the staff had initially suggested.) I think we ought to change the catheter, and we ought to try to fix the hernia at the same time. Isn't that more complicated (than just changing the catheter)? Yes, I think we'll have to use a general anesthetic rather than a local. We'll probably have to bring you into the hospital, but as long as your fluids stay clear you will be better off having both at the same time. Well, there's no time element, but it does seem more serious than they said. I just want to make sure you're operating for the right thing. Well, it could be several things (pauses and reflects). Well, no, it really has to be a hernia. I think we might be able to do it all at once. I'll talk to Susan about it and we'll see if we can schedule it. Who's Susan? The chief nurse on the dialysis unit. Does Dr. N. (her nephrologist) know all this is going on? Yes, he is the one who asked me to do this. O.K. Several features of Ms. A. G.'s behavior are interesting from the point of view of the doctrine of informed consent. First, unlike any of the acute patients we observed, Ms. A. G. did not simply take it for granted that whatever a physician told her must be the right thing to do. Indeed, her question about whether or not he was doing the right thing caused the surgeon to reconsider what he had told her (although the need to reopen the abdomen would have been there in any case). She also wanted more information about what he proposed to do than any acutely ill patient that we observed. Finally, Ms. A. G. did not simply assume that the surgeon had a right to be doing what he wanted to. Both by asking about whether he should touch an area that she knew could lead to infection and by asking whether he had her physician's approval, she indicated a certain desire to keep control over her own treatment. Ms. A. G.'s level of interest and the intensity of her questioning were common among those on dialysis and some other chronic patients. Almost no acutely ill patient participated so intensely in the decisions as she did. Our interview with Ms. R. Z., a 27-year-old woman who had been on hemodialysis for four years and had had two kidney transplants, both successful, was CHRONIC DISEASE: SICK ROLE/INFORMED CONSENT 247 also fairly typical of what chronic patients told us. The following discussion occurred after Ms. R. Z.'s long description of her history and treatment: Interviewer: Ms. R . Z . : Interviewer: Ms. R . Z . : You obviously know a lot about this. Where did you learn it all? I just picked it up as I went along. From doctors and nurses? Did you read anything? Oh well, I did read a lot, too. I was in the hospital in Florida. I was in there from December till March, and my room was like right across from my doctor's office, and I had read everything in the hospital, and so he told me, you know, "here's the key to the office, and there's the magazines and the books in there if you want to read them." And so instead of reading the magazines, I just started reading his medical books. I listen to them, too. I don't let them do anything without telling me why or why they want to do it, what it's going to prove, stuff like that. I always make them explain it to me. Interviewer: Do you think most patients can make that sort of decision for themselves? Ms. R . Z . : I don't know. I think you should be able to. I think it's better the more you know about it. I think too, like you should be able to read your own chart because it's you that's in there. Interviewer: Do you read your own chart? Ms. R . Z . : I do, but they don't know I do . . . (laughter). A couple of the nurses know I do, but like if Dr. D. or any of the doctors knew, they would have a heart attack. Some of the nurses take my chart off me once in a while, too. I feel I should know about it. Although Ms. R. Z. was less suspicious of the doctor's motives than Ms. A. G., her behavior also indicates a strong tendency to take an active role in dealing with her own disease. Not only did she repeatedly ask about her treatment, but she used any source she could get her hands on to find out about it. The staff who treated the dialysis patients in general were quite supportive of patients participating in the treatment decisions. Patients were given tours of both the hemodialysis and peritoneal dialysis programs and encouraged to talk with other patients before deciding which type of treatment they wanted. Similar high levels of understanding and substantial discussion with the medical staff were also found with the non-renal patients in this group. Substantial teaching by physicians and nurses was common and patients often sought out other sources of information. One patient with chronic bowel obstructions spent one-and-a-half hours explaining to our interviewer the history, signs, symptoms, and treatment procedures for this condition. Although she was generally quite cooperative with her physicians, she did not hesitate to correct 248 CHARLES W. LIDZ ET AL. them when she thought that their ideas about treatment were incorrect, a not infrequent occurrence since she often encountered physicians who had never seen a similar case. NON-UNDERSTANDING CHRONIC PATIENTS As we noted, not all chronic patients had such a good grasp of their treatment. Two disease groups stand out, each failing to understand their treatment for quite different reasons, cardiology patients and patients with chronic pancreatitis. By looking at these two types of cases, we can learn something about the conditions of successful patient involvement. As we have reported elsewhere (Lidz et al. 1982), the cardiology unit was organized in such a manner that it was hard for patients to know which physician to talk with about their treatment. Not infrequently, five or more physicians were making decisions about their care. None of these physicians made a major point of discussing treatment with patients unless an invasive procedure was contemplated. This partly reflected the complexity of ward organization but it also reflected the fact that neither patients nor staff saw treatment decisions as a matter for the patients to be concerned with. Patient passivity and staff disinterest reflected the way in which the ward staff dealt with these patients' problems. Despite the fact that these patients had such chronic problems as congestive heart failure and arteriosclerosis, they were typically admitted in the middle of an acute crisis. Both physicians and nurses focused on adjusting their medications to prevent a recurrence and monitoring the after effects. Although at the end of their hospitalization patients often met with dieticians and in other ways were encouraged to adjust their lives to their chronic medical conditions, for the better part of their hospital stays, these patients acted and were treated as if they had acute illnesses. They were simply given their medicine and told that they were or were not getting better. It is thus important to note that the objective existence of a chronic medical problem did not necessarily produce an active, understanding patient. In those cases in which the physician, nurse, and patient responded only to the acute crisis aspect of the chronic disorder, the patients and physicians both seemed uninterested in patient participation in decisionmaking. In this connection, it was striking to note that the three patients on the cardiology unit who also had diabetes or renal disease were able to describe these conditions and their treatment at great length, but could tell the interviewers almost nothing about their heart conditions. The second group of chronic patients who did not actively participate in treatment decisions were the patients with chronic pancreatitis. 3 While these patients also entered the hospital in an acute pain, it was neither as serious a CHRONIC DISEASE: SICK ROLE/INFORMED CONSENT 249 crisis nor did its management require nearly as much attention as most of the cardiac crises. The lack of patient involvement here can be partially explained by the fact that pancreatitis is a medical problem with a strong moral component. Chronic pancreatitis is typically a direct result of too much alcohol consumption. The physicians we observed all disapproved of their patients' failure to take medical advice to stop drinking and had trouble sympathizing with these patients, whom they felt brought the problem on themselves. Their discussions with the patients were usually limited to telling them what would be done next and warnings that they should stop drinking. Discussions of the risks and benefits of and alternatives to total pancreatectomies were typically limited to a statement that the operation would make the patient diabetic. What this makes clear is that, while being a chronic patient is a status which confers an opportunity to participate in treatment greater than that for most acute patients, this status, like most statuses, requires certain behaviors. In specific, a good patient is expected to cooperate with the prescribed treatment and certainly not do anything to worsen the problem. By failing to make any effort to educate chronic pancreatitis patients about their treatment, the staff was expressing their view that, by continuing to drink, these patients had shown that they were not committed to their own health and thus should not participate in decisions about it. NEW CHRONIC PATIENTS AND CHRONIC PATIENTS WITH NEW DISEASES The data we have presented so far can be interpreted as suggesting that patient understanding and participation in treatment decisions are largely a function of the length of time in treatment. Moreover, it seems reasonable that the longer patients spend in treatment, the more they will understand of their disease and consequently the more they will participate in treatment decisionmaking. This viewpoint can be called the gradual learning hypothesis for explaining the greater levels of participation and understanding among active, incurable, chronic patients. However, the gradual learning hypothesis runs into two types of contradictory evidence. First, newly diagnosed patients with incurable chronic diseases which require their participation often know almost as much about their illnesses as the patients who have had them for many years. Consider Mr. D. Y., a young man who lost his vision and his kidney function in a sudden diabetic crisis. He began peritoneal dialysis the morning of his interview: Mr. D.Y.: Yes, I went for the peritoneal treatment, and I could have had a hemo treatment, where they would put needles in my wrist and take out the blood and purify it, and put it back in. But I'm doing 250 Interviewer: Mr. D.Y.: Interviewer: Mr. D.Y.: Interviewer: Mr. D. Y.: Interviewer: Mr. D. Y.: CHARLES W. LIDZ ET AL. it the peritoneal way which, because I ' m a diabetic, I feel is much safer, lower risk . . . . Why do you think it's safer because you're a diabetic? Well, a person just with kidney failure, no other problems their bodies are a little stronger, their bodies are more durable, and they could probably take the six, eight hours of hemo. A diabetic, his resistance is low, and the catheter in the stomach is a more gentle way of doing things. Can you explain to me how the peritoneal catheter works; how they dialyze you with that? Okay, eventually (I am) going to a machine, but right now they have me hooked up on a bottle system, in which they let the bottles flow into me and once it's all flowed into me, then they close the bottles off (points to a pole with two bottles and several attached tubes). The bottles flowing in are on the top and they reverse it on the drainage by using gravity, and there's a bag at the bottom, which they open that bag and all the fluid comes back out of me. And as these fluids go into me, they get the impurities and the body's waste and the poison that the kidney's not taking care of, and they're bringing them out and helping me to fare better . . . . Uh-hm. You know a lot about all this. Where'd you learn it? They took me on a tour of the hemo up on the l l t h floor, then they gave me a tour of the outpatient peritoneal down here on the 9th floor, and they gave me information, and I started talking to other patients here on the floor. My roommate and a patient down the hall came by, and she's been on a machine for a couple months, so I asked her questions about that. So I ' m just learning as I go here. Sounds like you're learning a lot. Well, yeah . . . if you want to live then this is the way to go. I mean, you pay attention. While it may or may not be true that this patient was better off having peritoneal dialysis, it is clear that both the patient and the nursing staff had made substantial efforts to improve his understanding and that the staff had encouraged his participation in the decision. The other type of evidence supporting the position that the chronic patient's role is not simply a result of the length of time in treatment is that active, incurable chronic patients who suddenly develop an acute illness, largely unrelated to their chronic disease, seem to behave much the same way that other acute CHRONIC DISEASE: SICK ROLE/INFORMED CONSENT 251 patients do. They do not ask many questions and seem content to let their physicians make all the decisions. One dialysis patient who had a heart attack told our interviewer about her cardiac treatment: "Oh, I let them make all the decisions. I don't know a thing about it." Another such patient talked a great length with our interviewer about his dialysis but knew nothing about his heart condition except that it was a "heart attack, not angina." Thus our data is more consistent with what might be called a chronic patient role theory of the behavior of these patients than with the gradual learning hypothesis. Patients and their physicians and nurses began, as soon as the diagnosis of chronic disease was clear, to modify their behavior in the interest of patient learning and participation in their treatment. They seemed to accept that the patient would have to know new things and behave differently as a result of having an incurable chronic disease. DISCUSSION This paper has suggested that the efforts to transform the doctor-patient relationship along the lines of informed consent are likely to be only partly successful. Patients with chronic diseases seem to be relatively amenable to this sort of change and to have the support of their doctors, but patients with acute diseases or those who believe that they have acute disorders seem less interested. Since our data is limited to a single medical center and our sample is small and unsystematically gathered, we can only speculate as to how widespread the patterns that we observed are in American medical care. However, on the basis of what we observed it is possible to suggest some possible interpretations of the findings on the literature that informed consent is a rare phenomenon and explain some of what may be the major exceptions. Talcott Parsons' pioneering essay on the relations between doctor and patient suggested that the sick role involved a temporary emotional regression, the right to give up ordinary responsibilities and an obligation to cooperate with the physician's health-directed orders. The important point here is that this model implies that the sick role is a temporary status that can be abandoned following a cure (Gallagher 1976). However, for the patient whose life depends on 12 hours a week of renal dialysis or who must constantly monitor dietary intake and insulin levels, such a social and emotional regression must be abandoned if any sort of ordinary life is to be resumed (Czaczkes et al..1978). For such patient, failure to resume ordinary roles, modified only by the physical limitations of their disease, is to permanently abandon the deeply held ideal of individual autonomy. This is also not an outcome that most health professionals desire for their patients since it means having to deal with a continually dependent patient. 252 CHARLES W. LIDZ ET AL. However, it may also be productive to try to understand our findings in the larger context of the type of transformations that other social institutions have undergone in the recent past. If there has been any basic trend in Western civilization over the last few hundred years, it is the growth of the institutionalized esteem of the Individual. Weber noted this in the sanctification of the individual conscience arising from Protestant theology (Weber 1958). Durkheim saw a similar cultural development emanating from the Enlightenment and spoke of the Cult of the Individual (Durkheim 1933). Among the major developments that came from this new cultural pattern were the extensions of citizenship culminating in the universal franchise and the development of universal basic economic rights culminating in the welfare state (Marshall 1964). In the past several decades, we have seen a series of profound legal developments in our society that have focused on the inclusion in the quasi-sanctified category "Individual," members of a variety of groups who had been denied (and to some degree still are denied) that status (Parsons 1965). These groups have included blacks, women, children, prisoners, and the mentally and physically handicapped. The process of including these groups has involved the development of a variety of new legal devices and models. As an outgrowth of this development, new rights have been found for a variety of groups which differ from the above listed groups because their membership is temporary and/or achieved rather than ascribed. For our purposes, of course, the most important of these groups is medical patients for whom the doctrine of informed consent was created. The doctrine constitutes an effort to modify the doctor-patient relationship in the direction of greater participation by the patient in a manner that self-consciously parallels civil rights and other legal changes made in the recent past (Yale Law Journal 1970). It is important to note that efforts to make changes that provide increased participatory rights seem to be successful primarily when the participants see themselves as permanently occupying the statuses to which the rights apply. Thus, for example, union participation is substantially higher in societies with stratification systems that lack the Horatio Alger mythology present in the U.S. Acceptance of the right to participate on the basis of having special rights as an occupant of a special status implies acceptance of the special status. For acute patients, the important issue is not their right to participate as respected patients but the ability to leave the status of patient altogether. Structurally, it has been argued that the extension of new rights to special status groups actually produces an upgrading of the general system's functioning. Thus, for example, the extension of political citizenship increases the potential ability of the system to achieve collective goals because political participation involves greater acceptance of the legitimacy of the political system and thus greater willingness to accept political mobilization for legitimate collective C H R O N I C D I S E A S E : SICK R O L E / I N F O R M E D C O N S E N T 253 goals (Parsons 1968). A parallel a r g u m e n t has b e e n m a d e for i n f o r m e d consent, i.e., i n f o r m e d consent will yield m o r e cooperative and involved patients w h o can c o n t r i b u t e to i m p l e m e n t i n g their t r e a t m e n t (Katz 1984). Indeed, our evidence suggests that the active incurable chronic patients w h o m we observed o f t e n played significant parts in m o n i t o r i n g their t r e a t m e n t and even implem e n t e d significant parts o f it. Thus we suggest, b o t h o n empirical and theoretical grounds, that high levels o f participation in medical decisionmaking are likely to be f o u n d o n l y a m o n g chronic patients w h o see their status as patients as relatively p e r m a n e n t . ACKNOWLEDGEMENT We wish to t h a n k Ren6e C. F o x for particularly helpful c o m m e n t s on an early draft o f this paper. Law and Psychiatry Program Western Psychiatric Institute and Clinic, University of Pittsburgh 15"ttsburgh, PA 15213 NOTES 1 The interview schedule and details of the method are presented in our full report of the study (Lidz and Meisel 1983). 2 The two observers were asked to rate these patients and an equal number of randomly selected patients from the remainder, stratified for inpatient-outpatient status, on a 1 to 5 scale of understanding. The special group of chronic patients had a mean of )( = 4.14, the control of .~ = 2.86, which is statistically significant at the .05 level. However, the non-random nature of the sample and the fact that both raters knew the hypothesis leads us to treat such statistics as only suggestive. 3 There is no evidence, from our observation, that this particular group of patients had any neurological deficits secondary to alcoholism although, since we did not do neurological examinations, our data does not allow us to rule it out as a possible explanation for their lack of understanding. REFERENCES Czaczkes, J. W. and DeNour A. Kaplan 1978 Chronic Hemodialysis as a Way of Life. New York: Brunner/Mazel. Denzin, Norman 1970 The Research Act: A Theoretical Introduction to Sociological Methods. Chicago: Aldine. Durkheim, Emile 1933 The Division of Labor in Society. Glencoe, IlL: Free Press. Epstein, L. C. and Louis Lasagna 1969 Obtaining Informed Consent - Form or Substance? Archives of Internal Medicine 123: 682-688. 254 C H A R L E S W. LIDZ ET AL. 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