Your Doctor … Your Privacy

THE OPEN MIND
Host: Richard D. Heffner
Guest: Dr. Robert Michels
Title: “Your Doctor…Your Privacy”
VTR: 10/9/88 Part I

I’m Richard Heffner, your host on The Open Mind. And this program is about privacy and the proper practice of medicine…about the tension that exists – and the extraordinary ambiguity there, too – when we try to identify jus where in the medical model, the delicate balance reasonably, responsibly exists between our right as patients to privacy, and the rights and needs of the rest of society. Today, of course, the tension between a physician’s obligation to respect individual patients’ confidences and to disclose what he must to protect the rest of us is focused on the AIDS epidemic. Yet this prototypical dilemma of medical ethics has always been with us, and I want to examine it again today with a physician who, here on The Open Mind as everywhere, has proven to be truly a man for all seasons, and concerns. Dr. Robert Michels is Chairman of the Department of Psychiatry at Cornell University medical College and Psychiatrist-in-Chief at New York Hospital. And I want to begin our program today by asking Dr. Michels to explore with us, and to react to the American Psychiatric Association’s official confidentiality and disclosure policy relating to AIDS in which the Association seems to want at least to seem to have the best of two worlds, past and present, stating unequivocally: “For physicians the care and treatment of individual patients is of the utmost importance. Patients must be confident that the issues discussed with their physicians are private” declares the Association, but then retreats somewhat, adding: “And will not be unnecessarily divulged. Certainly any breach of confidentiality should be a last resort, only after scrupulous attention has been given to all other alternatives”.

So there it is: Like taxes, a last resort to be sure…but a resort, nonetheless. So, Dr. Michels, when you were here last time you said “the broader issue is who is the doctor working for? Is he working for the patient, or is he working for society?”. And I’d like to know what your answer is in terms of this medical confidentiality versus disclosure argument today.

Michels: It seems to me that clearly he or she is working for both. We most comfortably and traditionally think of the doctor as working for the patient, and there are several reasons for that, one is that the patient won’t go to a doctor if the patient doesn’t feel confidence that the doctor’s primary concern is going to be the patient’s welfare. So the whole system doesn’t work unless everyone knows and believes that doctors’ primary concern is with patients. But at the same time, doctors control a huge amount of resources, in our world, in the order of magnitude of ten percent of the gross national product. And also doctors have information which is of immense social important, information that might be so valuable, that if it isn’t available to society, it could lead to great harm. So that we think of the doctor as having a primary responsibility to the patient, but we recognize some limits, some boundaries on that responsibility when the responsibility to society becomes so great or so imminent that the responsibility to the patient has to be balanced against it.

Heffner: So the question, as in so many instances, is where do you draw the line? But how do you operationalize the response to that question. How do you operationalize it so that I know what you, as a leading physician, say will be approximately the same as the next leading physician?

Michels: Well, that’s to me two questions. One is “where do you draw the line?” and secondly, the one you’re raising is “who draws the line?”. Implicit in the way you phrase it, and in the fact that you start by reading a document from a professional association, the American Psychiatric Association, is the recognition that the medical profession, or one of the specialties in it, psychiatry, feels that it isn’t appropriate for each practitioner to draw his or her own line, but that the line that’s drawn should be drawn by a peer group of the profession, who share their views, their concerns, their values, have a dialogue that’s a public dialogue, and make clear where that line is. So that the fact that it’s a consensual line rather than an individual line is one of the things that makes medicine and psychiatry professions, rather than just groups of practitioners. The difficult question is where to draw the line? You read what sounded like an attempt to stand on both sides of a line, and the immense public concern about this issue makes that understandable. I think it’s important to recognize that the line may appropriately move over time on any given issue, a we learn more, as the risks and benefits seem to change. For example, take the AIDS issue, the one that brings it up now. We might draw the line differently if we had a certain cure for this disorder as opposed to if we knew that there was no treatment that made any difference. We’re more comfortable intervening on someone’s privacy for his or her own personal good than we are if it’s only for the safety of the community. We might draw the line differently if we were to discover that a communicable disease is communicable without the participation in any way of the person who receives it. So a disease that one could communicate just by being present in the community might lead to a different position than one that requires the participation of the person who is to catch the disease vector.

Heffner: May I ask you about that? Is there anything in as complicated a life as we lead today, where that isn’t really true? Where one can, without an enormously active participation, but just by leading a normal life, be a victim to the contagion?

Michels: You have AIDS specifically in mind?

Heffner: Yes. Yes.

Michels: I think there’s a very strong consensus in the epidemiologic community that there is no significant risk of contracting this disease without active participation in some activity that leads to getting the virus. It’s not a very sturdy virus. It’s carried in blood, it’s carried in other bodily fluids, and it’s carried cross-placentally from mother to infant.

Heffner: Yes, but that certainly, that last mention is the one I was thinking of. From mother to infant, not the participation of the child born with AIDs. Isn’t that where the focus must be placed in terms of society’s interest, as society protects the unborn?

Michels: Certainly there’s a societal interest in protecting the unborn, but no one I can think of has seriously suggested that that would extend to preventing a woman from conceiving a child. That would be a rather horrendous intrusion on the most minimal civil liberties that we think of. I think it might extend to making certain that no woman is exposed to bearing a child where knowledge that she is a carrier might influence certain critical decisions of hers about that pregnancy.

Heffner: Or that her husband is a carrier. In other words, don’t we come full circle, or not really full circle, to the end of the line beginning with the unborn child who may be a victim of AIDS, to the mother who carries that unborn child…who was not knowledgeable that her mate had AIDS, to the mate himself and to the physician who seems, himself, to be bound not to disclose the AIDS involvement without the permission of his patient?

Michels: Well, that’s the perfect test case and it’s the one that’s in people’s minds. What do we do if a man, who’s married, is found to be carrying the virus. Of course, he doesn’t have to have AIDS…

Heffner: Yes.

Michels: …to be capable of transmitting it. And although it is suggested to him that it would be appropriate for him to inform his spouse, he chooses not to do that and further, not to take the kinds of precautions that would limit the danger of her coming down with the virus herself, and then potentially transmitting it to a child. That’s the test case. It seems like an easy answer to say that that’s across the boundary. That’s the situation where we might violate the patient’s confidentiality in order to protect a critical member of society, the future unborn child. But there’s a problem with that simple analysis because certainly a policy like that would have to be a public policy, as it is in the American Psychiatric Association statement on the issue. And one result of a public policy is it influences the behavior of many people who might or might not seek help or guidance. So then we have to start a very difficult problem which is weighing the protection of that unborn child against eth risk that lots of potential carriers of the virus won’t go to physicians, won’t seek help, won’t seek counseling, and won’t have their infectivity – ability to transmit the virus – limited on the basis of that counseling because they’ll be fearful that their confidentiality will be violated. We might protect more people by keeping secrets that are even dangerous rather than revealing them if it so increases public trust in the profession that it makes it more likely that people will seek help.

Heffner: Well, let us take that point and pursue it a little further. Isn’t there still another response, one that will be even more horrendous to civil libertarians, and that is the requirement of testing, so that the unwillingness of an individual to subject himself to examination by a physician because he is concerned that the physician is no longer bound to maintain the patient-doctor confidentiality, that he must be tested. I mean isn’t there a horrendous, admittedly horrendous way of getting around that difficulty?

Michels: It’s sort of hard to conceptualize how you require testing and then what you do with the information. Let’s say we were to require testing. Require it of whom? People planning to get married? It’s rumored that people do have children before they get married and certainly expose others to the risk of venereal disease of one kind or another or the transmission of the HIV virus. Require testing of everybody. We suspect in our country today there are more than a million people who are carrying the virus. What do we do with those who test positive? Tell them not to participate in sexual activity. Ask them to promise? Sequester them in some corner of the United States away from others?

Heffner: But, Bob, that’s such a strange response, it seems to me. It’s saying, “Look, in a sense it would be desirable to have this information, but imposing a violation of confidentiality might prevent us from getting this information”. Another means is suggested and you say, “but what would we do with the information”? Are you suggesting we just don’t want it because we don’t know what to do with it?

Michels: I’m not sure it’s desirable for us, by us you mean “society”, to have that information.

Heffner: Yes.

Michels: I think it’s desirable for the intimate members of the family or the intimate love partners of someone to have the information. So I don’t want to collect information about who has HIV, I don’t know what to do with it. Set up a card file? Publish it in the newspapers? That wouldn’t do any good. What I want to do is create a climate in our society where there will be no inhibition of a person trusting those around him with this knowledge. In order to do that I want to decrease discrimination against those who potentially have the virus. I want them to feel that society will not ostracize them. I want them to feel that it’s safe to tell their partners rather than dangerous to tell their partners. My own guess is that we’re more likely to encourage people to tell their loved ones that they’re carrying the virus if they feel they won’t be discriminated against or punished as a result of it. Anything we do that makes it a terrible social disease to admit that you’re carrying HIV will encourage people to keep it secret.

Heffner: Do you think we will not be encouraging them if we take the non-steps that others might suggest, that we sit back and respect the confidentiality? Don’t threaten people. Don’t insist upon testing and hope that goodness will surface from this goodness?

Michels: I don’t recognize myself in the naïve portrait you paint of me. I don’t want to sit back, I want to lean forward.

Heffner: What do you want to do?

Michels: I want to be very interested in helping, encouraging, persuading people who are carrying the virus to recognize the advantage of sharing that information with those who might be exposed to it, to make them feel as safe as possible in doing that. To provide them with the assistance and services that would decrease the danger of their doing that, and to provide the same to their loved ones. I also want to let them know that we will support them, as a society, through their illness, if they develop it, and support those that they have contact with. I want to make it a world in which being sick does not cut you off from other people in your world, but gives you ties to them.

Heffner: All right. This is what you want to do. But you are a physician and the knowledge comes to you that your patient has the virus, is infected, does not accept the world picture that you want to have accepted. Now I appreciate that world picture. It’s not at the moment real and you don’t pretend that it’s real. It’s not yet that kind of world. And that patient refuses to take those admonitory steps that you want him to take. What do you do?

Michels: Well…

Heffner: In this world.

Michels: In this world. First, I recognize that a person who won’t take those steps is unlikely to disclose to me all current and potential future sexual partners. And if I know the name of a spouse or a current partner, and I warn that person, but decrease the chances of being able to warn all the future other partners, I have done no “net” good. I may have done “net” harm. If I discourage all of that person’s friends, or associates from thinking of seeking help when they might be in trouble and from potentially being persuaded to change their behavior, I’ve done no “net” good and I might have done “net” harm. So the first thing I want to do is be extremely cautious about using my personal judgment about how to save a life, when I might inadvertently be costing ten in the process. I also don’t want to make the decision under fear of being sued if id o it one way or do it the other way. It seems to me that there’s no personal gain for a physician in either warning or not warning, and I’d rather trust the humanism and the best judgment of a caretaker caring for a patient than have a set of legal principles that for e me to protect myself either by telling or not telling. I’m not sure that’s the best climate for the decision.

Heffner: If you have to make a bet, though. Do you bet that the humanism will prevail? Or the legal structure that will require you by putting you in jeopardy if you do not reveal what you know?

Michels: We now have such a hodge-podge of legal structures that depending on what city or state you’re in, in one place you’re in jeopardy if you know and don’t tell, and in another place you’re in jeopardy if you do tell, even though the information may be vital to give to someone else. We have recognized the ethical dilemma in the way our society does so by having contradictory laws on the books in different jurisdictions. I don’t think there’s a legal solution. I think we want a dialogue among the professions, and between professions and the public about how to solve this problem. I think we have to recognize that in some ways it’s a tension between important values that may be inherently insoluble. We have to live in that tension. I’m very concerned about absolute rules on this. I’m fairly sure there’s some situations, rare ones, where I’d want to violate a patient’s confidence.

Heffner: But you know, forgive me, I didn’t express, didn’t state my question well enough. I really want to know how you, as a psychiatrist, as a person who is very much interested in the way we, as a society, think what your estimate is as to which way we will go given the materials, the human materials, we have at hand. Do you think we will stay as loose as you suggest, rigidity being a damaging factor? Or do you suspect that we will impose legal sanctions.

Michels: I think in the short run we’re going to flail about with contradictory rules because there isn’t a clear right answer. I think some communities will go one way, some will go another way. There’s some people who still try to think of this epidemic as being something that is endangering “other” people, and as long as it can be confined to the group of “other” people, people like they, themselves, are safe. There are others in communities that have come to recognize that this is an epidemic that affects the entire community and there aren’t “other” people and people not at risk, that we’re all at some risk, and we all have to take care of each other. I think different communities will have different rates of recognizing that truth and, therefore, I think for a period of time you’re going to see contradictory rules.

Heffner: You know, I don’t know whether you agreed with my notion that the American Psychiatric Association’s policy does seem to want to have the best of both worlds. Again, “patients must be confident that the issues discussed with their physicians are private”. Then says, “And will not be unnecessarily divulged”. As a psychiatrist, as a member of the American Psychiatric Association what does that mean?

Michels: To me it means that although there might be conceivable indications for violating the patient’s confidence, and that’s long been recognized by the profession, in the case of a clear and imminent threat to another person, and in fact, that’s really violating the patient’s confidence to protect the patient, because if that kind of threat is enacted, the patient himself is in danger. But in the absence of that kind of immediate, clear, imminent and otherwise unpreventable threat, there’s a strong, strong bias toward all close calls going to confidentiality. I don’t want someone to be in the situation where if they see a psychiatrist, and it emerges that they probably are HIV positive, and they’re ambivalent and uncertain about whether or not to tell a spouse that they have only limited contact with, the psychiatrist is under legal or social constraint to immediately violate their confidence and inform that individual. I think that would have a very negative effect on our society.

Heffner: What is the burden on practitioners in psychiatry of other kinds of information that could have dire results for other individuals and, let’s say for society at large, forget AIDS for a moment, but in terms of potential crime?

Michels: There have been a series of legal case exploring this in the last decade or so, and, of course, since that’s largely a matter of state, rather than federal law, there’s some variation from community to community. The profession though, generally recognizes that when there’s a clear, imminent danger to a specific, identifiable other individual, that the psychiatrist learns about, that the psychiatrist has an ethical obligation, and in many places, a legal obligation to do something. There’s some argument about “to do what”? To notify or warn the other individual? To try to protect the individual at risk? Or both? Sometimes warning and protecting come into conflict with each other. Sometimes you can protect someone better by treating the patient, rather than by warning the potential object of aggression or violence. And there’s some dispute about how to word that obligation. But a general recognition that there are limits to confidentiality in those situations.

Heffner: You know, the question also comes up as to whether the matter of confidentiality isn’t almost moot in our times, our times of record keeping, our times of the computer. And I wonder, what the impact has been, in your estimation, of these modern miracles, these wonders of keeping records, upon real confidentiality.

Michels: Certainly their immense potential inroads into confidentiality by all of the other parties involved in medical care. One of the side effects of the miracles of modern medicine is that there are large numbers of people involved in delivering care to somebody who receives it; and large numbers of people mean records and mean data that’s somehow potentially available to others. Most often that information is used for accounting purposes, for quality assurance purposes, and for most patients doesn’t reflect a threat to their privacy. But, that’s only true most often, and the potential for risk is there. That’s a problem. However, in the record keeping of much of medicine at least that’s weighed against the benefit to the patient. The patient who enters a modern hospital has less safety with his privacy, but he’s getting better care because of it. We’re particularly concerned when we give away a value such as privacy, and we give the patient nothing in return.

Heffner: Would your assumption be that as we develop more and more of these miracles of medicine that the question of confidentiality, the injunction of the Hippocratic Oath will become, moot may not be the proper word, but will become less and less of a concern. In reality.

Michels: I hope not. There are some things that work the other way in terms of the predictions of how the future will go. More and more medical care is delivered to out-patients, rather than to people in hospitals, and it’s easier to safeguard confidentiality in the smaller social network of an out-patient treatment rather than an in-patient treatment. And we’re moving away from anonymous physicians caring in high-tech ways for many patients toward recognition of the medical value of having a long-term doctor/patient relationship organizing the care. That moves us back toward the personal medical relationship and that provides some safeguard also.

Heffner: Are you suggesting that there really has been such a movement back?

Michels: Yes, I think we see it in the tendency to try to move from hospitalization as the major setting for treatment to having as much treatment as possible done in out-patient settings and also in the recognition that as we have a great and greater supply of physicians in our country, that it’s good to have a doctor who knows you taking care, rather than expert you’ve never met before.

Heffner: You mean economics will raise its not this time ugly head, but handsome head? The surplus of physicians?

Michels: The surplus may help create time for physicians and patients to get to know and talk to each other again, and that would be a desirable effect of the economics.

Heffner: You know, the question that remains in my mind, and we just have a couple of minutes left, what are medical students being taught today about this question of that part of their Hippocratic Oath relating to confidentiality?

Michels: Medical students are being taught more than ever before about these issues. Most medical schools have courses in medical ethics and spend time discussing it. Medical students spend most of their educational experience in hospitals, rather than in out-patient or individual practitioner settings, and so they’re exposed to some of the problems in this area very early in their career. They also tend to enter medical school with the best values conceivable. They’re selected for it, and they’re bright and appealing for the most part, so they’re worried about these issues. I think in the past we’ve managed to diminish their concern with this in the course of medical education, and we may be getting better at that, we may be preserving some of the values they enter medical school with.

Heffner: Dr. Michels obviously there are many of these issues that I would like to discuss with you, hear you comment on them, from medical ethics, all the different ramifications of this field of medical ethics and also what we teach our medical students. So, if you’ll agree, if you sit still as we come to the end of this program, we’ll do another one on some of those other subjects. Okay?

Michels: I would enjoy that.

Heffner: Thanks, Dr. Robert Michels. And thanks too, to you in the audience. I hope that you’ll join us again next time. And if you care to share your thoughts about today’s program, please write to the Open Mind, PO Box 7977, FDR Station, New York NY 10150. For transcripts send $2.00 in check or money order. Meanwhile, as an old friend used to say, “Good night and good luck.”

Continuing production of this series has been generously made possible by grants from: the Rosalind P. Walter Foundation; the M. Weiner Foundation of New Jersey; the Mediators and Richard and Gloria Manney; the Richard Lounsbery Foundation; Mr. Lawrence A. Wein; and the New York Times Company Foundation.

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