Informed Consent

THE OPEN MIND
Host: Richard D. Heffner
Guest: Robert Michels
Title: Informed Consent
VTR:6/4/82

I’m Richard Heffner, your host on The Open Mind. There’s considerable emphasis these days on each patient’s right, indeed even his responsibility, to be fully informed about what his doctor believes is wrong with him, what his doctor intends to do about it, and what risks are involved in the medical treatment suggested. In short, a patient should give his informed consent to do what is to be done. There are of course angry comments about, “whose life is it anyway?” But there are also pleas by thoughtful, concerned doctors that patients must care for themselves too, must share in the healing, life-preserving process. So that informed consent looms larger and larger in medical practice today, not just as doctors’ protection against lawsuits, but also as patients’ entry into the mature process of taking responsibility for oneself, in having and in keeping a sound mind in a sound body. Now, of all the medical topics we’ve treated here on the open mind, none seems to provoke as much response as any discussion of rights and wrongs in medical treatment. And usually there is a focus on informed consent, for this after all is the age of consent, and we have come to know better that doctors aren’t gods, that they too have feet of clay, and that we want to consent before we submit to their ministrations.

What complicates matters of course is that today even our most highly trained medical practitioners must master an ever burgeoning wealth of detailed information and scientific knowledge before even they can determine how best to meet our individual needs. Thus, we less sophisticated patients are at an ever greater disadvantage. And in truth, informed consent, at the very time we seem to need it most, may be becoming more and more of a myth.

Besides informed consent for those who are mentally ill presents us with even greater problems, ambiguities, ironies and decisions to be made. And that’s why I’ve invited as my guest today Dr. Robert Michels, Chairman of the Department of Psychiatry at Cornell University Medical College, and Psychiatrist in Chief at the New York Hospital.

Dr. Michels, thanks for joining me today. And let me begin our program by asking whether you feel that the psychiatric profession, your profession, is involved with, concerned enough about this question of informed consent?

Michels: My profession is two professions: medicine and psychiatry. And both medicine in general, and psychiatry in particular have been very concerned about this in recent years, partly because they have no choice, because as you have indicated, patients have been asserting their rights and have been seeking greater participation in treatment, and partly because it’s become increasingly apparent that the treatment is different when the patient participates in it, that many of the factors that cause illness or foster illness are related to the patient’s preferences and choices and patterns of living. And the patient who’s an active participant in treatment has a much better prognosis than the patient who’s only a recipient of it.

Heffner: Wait a minute. Repeat that. That someone who’s involved in treatment…

Michels: I’m saying someone that sees treating himself as his task, making decisions about his life that are relevant to his health as something that’s under his control or her control has a much better chance of living longer and having fewer illnesses than someone who thinks of treatment as something you receive from a doctor when you’re sick.

Heffner: Does that mean that the question of patients’ involvement, increasing involvement, is only a plus in the therapeutic process?

Michels: It’s essentially a plus, although like a great many other pluses, it’s often a bother for people who’ve become used to what’s an easier although less desirable system of thinking of doctors as people who have some special valuable thing to deliver, and patients who should be pleased to receive it whenever it’s available.

Heffner: Dr. Michels, isn’t that really again becoming truer with this burgeoning of medical information, how can I as a patient, psychiatric or medical possibly pretend to know enough or be able to have enough explained to me to participate wisely in a medical decision?

Michels: Well, I think what you’re raising is the thought that the patient never knows enough to autonomously make a medical decision that involves a doctor’s participation, or the doctor wouldn’t be necessary. And I would add that very often the doctor doesn’t know enough either, but needs consultation from others and maybe a little bit of luck as well. But I think if you see informed consent not as a prerequisite for good medical treatment but as a kind of ideal goal to which good treatment should always strive, that the patient should participate as much as possible, should know as much as the patient is able to know and able to use in making decisions, and that wherever possible the patient should be seen as a collaborator in designing and conducting the treatment rather than the object of the treatment.

Heffner: Would you be willing to separate the words of the phrase out, “informed” and ‘consent” and say, “Well, the patient must be informed, because then the patient can participate in the healing process, but consent implies an equality of input that the patient could possibly understand as much as the doctor does, so we’ll opt for information, but we won’t op for consent?” How would you react to that?

Michels: Well, I think to talk to that we have to first start recognizing that there are lots of different kinds of patients. Lots of different people become ill, and illness affects them in different ways. So we clearly would have a very different notion in mind for a five-year-old child, for an adult, for someone who’s in acute pain and distress and perhaps have a disturbance of a level of consciousness, in an accident, or an acute crisis of some sort, compared to someone who has a mild, chronic disability, who’s seeking care but is fully able to learn about, make choices, understand the difference between alternatives and even become educated before making the decision. We also have differences in doctors’ styles. And since doctors are real people and they participate in the treatment, we have to recognize that their styles are going to be one of the factors that influence what goes on. I’d say that what’s changed in the world – and I think it’s a good change – is the notion that informed consent with the maximal possible information and the maximal kind of voluntariness and participation in decision-making on the part of the patient is always a desirable goal, and every doctor/patient transaction should be looked at to see how we can move more in that direction.

Heffner: But there is consent and there is consent. There is the consent that comes from the doctor who knows best, as farther always knew best, informing the patient and saying, “Don’t you think so?” There is a different kind of consent in which the patient plays a much more active role. And I gather from some of my doctor friends that this is becoming not just a bother, not just a user-up on time, but rather that patients perhaps tend now to get too involved in areas that they know very little about, that they get too many opinions, not just a second but a third and fourth and a fifth, and not just from other doctors, but from maiden aunts too, and that this thrust today is perhaps not as healthy as you’ve maintained.

Michels: I think that in the real world the major barrier to the optimal participation of the patient in that kind of process is not that the patient wants too much knowledge or too much control, but much more often that the patient’s satisfied with too little. It’s common that people who are sick or are frightened about the meaning of a symptom or an illness are more than willing to turn over total control to their doctor, and the doctor has to strive to involve them in being willing to find out things that they’d just as soon rather not know. Most patients when seriously ill have to be supported and encouraged to seek information rather than their information-seeking becoming a problem in the treatment.

Heffner: And in psychiatry?

Michels: Psychiatries is, in more ways than not, the same as the rest of medicine, but there are a few situations of course where there are special problems. Some psychiatric patients, certainly a minority of them, have as part of the symptoms of their illness a failure to recognize the very fact that they’re ill by the way it’s affected their judgment and their thinking. So they’re a small group of patients who refuse treatment , who insist that there’s nothing wrong with them. And at times these are individuals who could be greatly helped by treatment. And that creates a dilemma in a free society like ours. We value individual liberty and autonomy and the control over one’s person, but we also value the right of people to health care when that care could reverse a serious illness.

Heffner: You mean even if they don’t it?

Michels: Even if they don’t want it. If we know it would make them better and particularly if we believe that after it made them better they would come to recognize how badly they had needed it and be grateful for it.

Heffner: that paternalistic attitude, how far does psychiatry carry it?

Michels: Well, I think paternalism is a very old and honored theme in psychiatry and in medicine. I think it goes awry when it’s a blanket thing, when the psychiatrist or other physician treats everyone paternalistically. But I think when people are childlike, if we don’t treat them paternalistically, we leave them to suffer from the results of their own problems or society’s response to those problems. I don’t think I want to live in a society where people have the power to treat any citizen paternalistically, but I don’t think I want to live in a society where when someone is needy or sick or could profit from help they’re left to die in the streets because they say, “No, I don’t want it”.

Heffner: But certainly, Dr. Michels, in our long history there have been those who have been considered childlike or childish who were indeed merely refusing to accept the criteria of society, who were rebelling. Now, you’re saying if we define them as childlike then society has an obligation to act in loco parentis?

Michels: No, I think you’re raising a fundamental and very difficult question of what’s the boundary between social deviance that amounts to alternate value systems, alternate political or religious or other moral systems, alternate preferential modes of expression, on the one hand, and diseases that are manifested by what looks like social deviance, on the other hand. That isn’t always an easy distinction to make. Sometimes though it can be made fairly easily. When someone has a recurrent episodic disease that responds to treatment and that’s marked by gross disorganization of their thinking, a failure to care for their elementary physical needs and a failure to connect with any others in the society who share their attitudes or beliefs, and when we know that that disease runs in families, sometimes that it’s connected with biologic abnormalities of function, and above all else, that we can reverse it with treatment and make someone a happier, more fully socially participant citizen of society. It seems to me that it’s a charade of civil liberties to allow them the freedom to go without treatment.

Heffner: Yes, but Dr. Michels, forgive me for saying that’s the easy way out. You’ve defined something so clear. You’ve drawn the line so clearly that I guess there are comparatively few people who would disagree with you. But can that line be drawn quite as often as one might consider necessary? And perhaps I’m wrong in even asking that question. Perhaps that’s true, that line can be drawn in each of the instances that would concern you.

Michels: I think there are people that would meet that description, and I think it’s important to recognize that our principles suggest that we should treat those people and treat them paternalistically even if it involves, as it sometimes does, treating them against their transient current, quote, will, close quote. I would fully agree with you that there’s a continuum and there’d be places where it’s very difficult to draw the line. And I’d go further and say that at this point in our knowledge of how to treat people and our concern with the potential abuses of the definitions of disease or illness being used as a means of social control, that our society feels that close cases should go to the individual. That it’s safer to live in a world where an occasional sick person unfortunately and tragically might go without treatment than in a world where the label of sickness might be used to incarcerate or constrain alternate forms of expression or alternate views of life.

Heffner: Do the courts and does medicine, do they function that way in reality, as broad-mindedly, as open-mindedly as you suggest?

Michels: Well, you’re raising what’s a very timely question. There’s at this very moment a case percolating through the federal courts and right now we’re awaiting a decision by the United States Supreme Court about a closely related issue. The question is: under what circumstances do psychiatric patients in mental hospitals who have been hospitalized against their will because they need treatment, in what cases do those patients have a right to refuse treatment? And there are a few basic principles that are generally agreed upon, and then there are areas of contention. Every state in the country agrees that there are times when an individual should be psychiatrically hospitalized even though he or she doesn’t want to because he may be dangerous, suicidal, homicidal, and in need of treatment. Furthermore, everyone agrees that there are situations when those patients in emergency situations in the hospital may have to be treated with medication, for example, even though they don’t want to be treated. The question is: when should a patient like that, who is in a psychiatric hospital, be allowed to refuse treatment when it isn’t an emergency? And there there are differences of view. The courts have sometimes argued, and civil rights lawyers have advocated the view that although society may want to incarcerate them, once that’s done and there’s no danger because of that, that they they should have the right to refuse treatment indefinitely. The psychiatric profession has tended to argue that it would make cruel irony if we hospitalized patients because they needed treatment and then we gave them the right to say no to that treatment when they might well be saying no as a product of their illness. It’s this issue that’s being argued right now.

Heffner: Then they are in limbo? They remain incarcerated…

Michels: And they in theory can remain in limbo, incarcerated, hospitalized but not treated for the rest of their lives.

Heffner: Do you know of any difficulty with this notion of the courts becoming involved in what is from one perspective a medical matter?

Michels: I think that it’s inevitable when doctors want to use coercion that the courts become involved, or we’d simply turn over all kinds of social controls to the doctors that we’re reluctant enough to turn over to the courts. On the other hand, I think it’s important that the courts remain involved at the level of the basic principles of defining the profession’s role rather than making scientific or professional decisions. Let me give you an example. There have been several cases of the type that I’ve mentioned going through the federal courts. One in Boston, one in New Jersey. And in some of the discussions about those cases it’s become clear that the judges involved were woefully uneducated about the nature of the drugs used by psychiatrists, the kinds of effects they have, the kinds of side-effects they have, the risks and the benefits. It seems to me to be very undesirable if tough medical decisions that doctors have difficulty making are turned over to judges who know less about medicine, less about the patients, less about the hospitals, and have no special extra source of wisdom to guide them.

Heffner: What is your prescription for this disease?

Michels: Well, it’s a social disease, and so I guess I’ll start with a social prescription. I think it’s very good that the dialogue is going on. I think it’s important that the role of psychiatrists and of the courts and of society in dealing with this problem is something that receives wide public discussion. I think it’s important to recognize that there are inherent paradoxes that our society wants to treat sick people, our society wants to give every individual maximal personal liberty, but at times those two goals clash. And I think it’s valuable that we have a dialogue about the tough cases when they clash. I think the dialogue about the touch cases may not solve the cases desirably in every event, but it will lead us to examine important basic principles, and it will show us where some of the problems are. For example, I think it’s been helpful for the psychiatric profession to learn as a result of this dialogue how concerned the public and the patients are about some of the side-effects of the treatments that are used, and that may provide an added stimulus for the scientists, psychiatrists to develop new treatments that are safer and more beneficial and perhaps, hopefully, would even encourage the public to support the research that will lead to those treatments.

Heffner: The side-effects I’m sure you include having halfway houses in which people who have been released from mental institutions change the nature of a neighborhood?

Michels: Well, one of the social side-effects of the way we treat patients is the way those patients relate to the rest of society. A few decades ago, there were many more patients in mental hospitals than there are today. And therefore there were fewer mentally ill people visible on the streets of our cities. Today there are more mentally ill people visible on the streets, and many fewer who live the often unpleasant life of being a long-term patient in a psychiatric hospital. I think that change is desirable. But it has to be coupled with the provision of adequate medical and social services for those patients who return to the community. I think the problem of our cities and our city streets is not that there are a larger number of mentally ill people on the streets – although there are – the problem is that there are not adequate treatments and adequate social support systems for those individuals. And therefore, rather than locking them out of sight of the rest of us, they are called to our attention daily because they live in our midst.

Heffner: Well, the problem is the combination of the two. The problem isn’t the result of one, but of both. Without those institutions, without the willingness of society to provide for these people who are out, we still wouldn’t have a problem if they weren’t out.

Michels: We wouldn’t have that problem.

Heffner: Okay.

Michels; But we live in a society that values personal liberty. And it raises disturbing questions if you’re suggesting that we can solve our problem of having undesirable people on the street by locking up or incarcerating anyone we noticed on the street who’s esthetically offensive or socially undesirable.

Heffner: Dr. Michels, in truth, just between the two of us, are we really that much concerned about the freedom of people who disturb us, who bother us, who makes us want to turn away? I’m not talking about the best of our heritage; I’m talking about what you observe as what most people feel.

Michels: I don’t know how to respond to, “Just between the two of us”, with the cameras on us, Dick. But I guess my answer to that would be that one of the reasons we live in a society that has principles that guide us over and above our immediate preferences is we recognize there’s a value to having rules that we’ve agreed to follow in the beginning. So that in some of these situations, for example, whether we can incarcerate someone and remove them from sight because he’s esthetically offensive, we’ve agreed a couple of hundred years ago in this society not to leave that up to our current preference, but to write it into the ground rules.

Heffner: I think that’s an absolutely beautiful way of putting it. I really do. I haven’t heard it put that way quite so well. But then I would ask you, do you think those thoughts of a couple of hundred years ago will prevail as we finish up this century?

Michels: That’s a painful, important, and tough question. I think that one of the effects of the process of deinstitutionalizing mental patients has had is it’s made it more difficult to ignore certain social problems that we were able to keep out of sight of most citizens by the use of institutions. I think that’s a good effect. That brings us face to face with the problem of how we allocate our resources in this society, to what extent we want to spend our resources to enhance the lives of those individuals either for their own sake or because we feel more comfortable living in a society where the least well-off person is reasonably well-off, take the resources that remain after that’s done and divide them among ourselves, the rest of us. That’s not an easy question, and I don’t think it has an obvious answer. And although I guess my view is clear from the way I formulate it, I think there are plausible arguments on both sides. But I think what’s important again is that we have the dialogue, that we don’t avoid the dialogue. And I’d also suspect that it would become increasingly clear that the expense of avoiding the problem in the long run would be great than the expense of facing it and trying to provide resources for it now.

Heffner: You know, I’m not so sure that your own conclusion is so obvious in what you say, because you are even-handed. But I remember at this table several years ago when we were talking about children and you were making the point to me that in our society these days there is very little that’s allocated by way of resources for the mental health of our children. Now this may be one of the areas in which you would prefer, you as an individual might prefer to invest our resources. So the choice really isn’t so easy at all. And it is a choice.

Michels: Well, there are tough choices. I think though that when one looks at the larger sphere of where our resources go, you face problems that look something like this: A few years ago, the last year for which I think the data is now available, the cost of mental illness and substance-abuse diseases in this country was over a hundred billion dollars a year. The amount of money we spend for research in developing new strategies and new treatments to help those individuals is a miniscule fraction of that. If a large manufacturing company were to spend the same percentage of its budget on research and development as our nation’s mental health system does, no one would invest in it because they’d know that its leadership was seriously misguided. It seems to me that one impact of a public dialogue about this kind of problem might be at least to make a more responsible investment in discovering new strategies for solving the problem, with the recognition that the payoff on those is well worth the risk involved.

Heffner: Bob Michels, we have two minutes left. I’ve just gotten the signal. But I want to come back for a moment to this question of informed consent, because somewhere here in this pile of material is an article that was written about consent form by Jane Brody in The Times. And she made the point somewhere along the line that the research indicates that doctors as well as patients really don’t know very much about the use and the content of informed consent. Is that your experience too?

Michels: Well, I think that doctors frequently think of informed consent as a way of protecting themselves from lawsuits or from vulnerability to some sort of legal disaster if there’s an angry patient. That’s one notion of informed consent, but I think not the inherently important one. If you mean that doctors like patients have to be educated to a new kind of relationship between the two, the relationship that moves toward the fullest possible partnership, the greatest possible sharing of knowledge, and the maximal autonomy of the patient in selecting and conducting and guiding the treatment program, then I think those are good goals and that we have to educated our medical students and our interns and residents and our practicing physicians just as we have to educate patients toward how to live and practice in that new way.

Heffner: Of course what scares me is the statistic quoted here that if you ask patients who have just signed their informed consent papers, they don’t know really what they’ve signed, they don’t know what it means.

Michels: I think that’s true. And that shows that patients are frightened. They’re often feeling physical discomforts that distract them from thinking clearly. And they’re often more concerned about whether they can trust the doctor than whether the doctor’s telling them everything. But I think if you ask people who’ve just signed a contract on a new house or a lease or a contract for a job what they just signed you might find the same thing. Informed consent isn’t a piece of paper; it’s a relationship between a doctor and a patient.

Heffner: We’re going to have to follow up on that in the next program too. Thanks so much for joining me today, Dr. Robert Michels. And thanks, too, to you in the audience. I hope you’ll join us again too on The Open Mind. Meanwhile, as another old friend used to say, “Good night and good luck.”