Later - rather than earlier - in my career of almost 46 years, I began to search for an understanding of words that attempted to define aspects of my behavior with patients, words to which I had not been sensitized in the 1940s. Rom habit, I went to the dictionary to learn its interpretation of "paternalism* and "autonomy." The dictionary, however, is not always helpful, particularly when relating its meanings to patients and physicians.
Webster defines paternalism as "the care or control of subordinates (as by a government or employer) in a fatherly manner."1 That was not helpful. I would buy the "care" but not the "control" nor the "subordinates." Paternalism, then, seemed to be the wrong word to describe a behavior with patients that I have concluded is appropriate and needed. In a search for something that would better convey my understanding, I next went to maternalism, "the quality or state of having or showing maternal instincts, eg, benevolence." Webster let me down again. He offers circular definitions and they are sexist to boot. He falls prey to a stereotype and perpetuates that stereotypical perception in a definition.
The ethicists gave more help. Faden and Beauchamp2 made me aware of ideas that were crystallized by Dworkin's suggestion that paternalism is "the interference with a person's liberty of action justified by reasons referring exclusively to the welfare, good, happiness, needs, interest, or values of the person being coerced."3 Dworkin, however, uses "interference" and "coerced" in ways that strike me as inappropriate. I agree that unwarranted interference justifies such an interpretation. However, when a patient visits a physician, advice is being solicited. A line is crossed when the physician intervenes in a manner unsuited to the particular solicitation. The physician must know the limits of this solicitation, the extent of the advice and information requested, and must understand that there can be no objection to advice when it is not wanted or warranted as part of the physician's business.
Ultimately, Slavney and McHugh4 came closest. Their borrowed definitions were more attractive. As I understand them:
* Autonomy can be defined as self-determination, the right to make one's choices and recognizing autonomy is comprised of confirming an obligation not to interfere with the choice of another and to treat another as a being capable of choosing.5
* Paternalism can be defined as a rationale for acting in a certain way toward another person to secure that person's good - an imposition on one person by another.6
I am comfortable with this definition of autonomy, but I demur a bit on the definition of paternalism because imposition seems to go beyond what I would intend. Further, while autonomy and paternalism are abstract concepts, they deal with matters in a very real world, one that constantly demands the setting of priorities in a confrontation with an infinity of variables that will not sit still for abstractions. There cannot be a rigid imposition of abstraction on a very practical circumstance.
Take, for example, the instance of a 2 -month-old baby girl who visits the pediatrician with her mother. It is time for immunization procedures but the mother has heard that pertussis vaccine can have bad consequences, so much so that she resists despite the statistical probabilities for harm to her child. In sum, the risk of pertussis for the infant is greater than the risk of the vaccine. The pediatrician, left with few options, might say, "There are a few but no important reactions. The important thing is that whooping cough is a disease that can kill an infant." This, however, minimizes the concern, perhaps inappropriately. The goal should be to share information and to avoid deception. It is paternalistic to pursue the matter and not to yield to the mother's concern. "I would like to talk to the baby's father and I would appreciate your permission to do that" - stated firmly but gently. Permission is given; it is rarely denied. The father's viewpoint tends to that of the pediatrician; there is further discussion within the family and with the doctor; the baby is immunized as the result of a paternalistic act taken without lying, without deceit and without the withholding of information. Sometimes, not often, the mother's exercise of autonomy will prevail. There is a discernible limit to the pediatrician's effort.
I have seldom, if ever, been comfortable with the notion that an abstract concept might be so inflexible that it can override my need to act now in ways that I feel best and that afford me a sense of what is appropriate in a given situation. If I then disturb the constructive tension between autonomy and paternalism, so be it. There are times, many times, when I must judge the depth of suffering and must decide on an action that is apt to relieve it. My view of what might be good for the patient, the potential of beneficence, intervenes. What I will not do, however, is reject abstract ideas as I struggle with the decision on how to act. I simply refuse to enshrine them.
This affects my relationship with a 16-year-old boy with cancer who asks if he is going to die. I am quite certain that he will. I cannot He to him, but I can shape my answer in a paternalistic fashion and, after I answer in the affirmative, I can keep talking. "Indeed, ali of us are going to die. When is uncertain even for you. Why don't we accept the reality for each of us? We'll talk about it if you want to, but let's talk too about the life that each of us still has, and about what we are going to do with it." The exact words depend on the circumstance. They indicate, however, my eagerness to spend time with the boy, to invest my experience in his, and to be understanding and compassionate, indeed, fatherly. The deflection from the thought solely of death, the investment in his experience, and the discussion of life are, I submit, paternalistic behaviors on the part of the physician.
So, too, is the act of involving the child at the expense of the mother's autonomy. For example, there was a 6-year-old who had a streptococcal pharyngitis. The physician was quite aware on the basis of past experience that the mother did not always follow through on the fulfillment of the child's need, in this instance, the giving of penicillin orally for 10 days. Given that knowledge, the doctor had the option of giving the child a long acting penicillin injection or of asking for the child's help in front of the mother. It is possible to explain to a 6-year-old that there is a need. Again, information is not withheld. There is no lying, no deception. It is paternalistic on the part of the physician to invoke the child, to state the case, and to ask that reminders be posted on the refrigerator and the bathroom mirror, using lipstick if necessary, to remind that the medicine must be given despite the mother's unwarranted conclusion that, "When he's better, he doesn't need that medicine any more."
Clearly, I have been struggling with these issues, and it is fair to ask how I came to this point. Basically, I was a school-smart little boy from Passaic, New Jersey who grew up to be a pediatrician. I studied hard, took tests well and, in time, got into medical school. That confirmed that I had good grades and that I was presentable. That's all. It did not confirm that I had wisdom, compassion, or problem-solving ability, or that I had whatever it takes to be a "good" doctor. In fact, back then, I didn't know what it meant to be a "good" doctor or what being a doctor really meant. I know better now the obvious and the subtle demands and rewards that are inherent in the role, but I still cannot define "good" in a way that might come close to universal acceptance. Certainly, compassion and competence would find their way into the definition. Nevertheless, is a doctor not "good" if he or she possesses a particular talent essential to the restoration of health but not much in the way of caring?
I did know that I had visited a cousin who was a medical student at Yale when I was 9 years old. He took my father and me on a tour of the Sterling Hall of Medicine. I vaguely remember a large entrance hall with a dome (confirmed many years later) and, in another place, what seemed like endless stacks of jars, a pathology room, perhaps. It was at the time of that visit that I told my immigrant parents that I wanted to be a doctor, and I clearly remember the delicious positive reinforcement that kept coming and coming. I studied hard, got the grades, and became in time a pediatrician. I have almost always loved being a pediatrician but, to this day, I do not know whether I really wanted to be a doctor or whether it was all that positive reinforcement and an ultimate inability to act counter to my public statement.
This anecdote is relevant because it gives a bit of insight on the substance of a physician, and it is background to the pleasure and the pain of the years in which I discovered the meaning of being one. I did not know then, and no one really talked about it, not even when I was in medical school. I began to find out during my residency, unprepared and to a great extent naked in the rush of experience, in the need to make solitary decisions at 4 o'clock in the morning, in the confrontation with the deaths of my patients.
I discovered quickly that I had no assurance that I was (or am) wise and that I had no special characteristics that fitted me for my role other than desire and the ability to pass tests. I discovered quickly, too, that there seemed to be a mandate, too often real, to act, to make an immediate decision. Even today, when the medical ethicists offer us significant discussion, sometimes helpful, sometimes pretentious, about so many of the issues relevant to action and decision-making, the need to decide now frustrates the desire to consider at a deliberate pace what might be best. Anticipation, discussion, and thought help. Happily, there is much more opportunity for that today than 40 years ago. Still, when in the arena, the infinity of possibilities cast up by life too often shrivel the fruit of preparation. And yet, the decision must be made.
How to act? How to behave? What to say? Finally, in the early 1950s, I went into practice, became very busy, did not grow up fast enough to shed much of my immaturity in those years and, day after day, time after time, found myself in a room alone with patients and their families, often in their homes, more often in my office. I behaved. I made decisions. I tried to work with them, and it all seemed to go reasonably well albeit, as I reminisce, with generous infusions of paternalism.
Then, I'm not sure just when, words appeared in my reading, ethics, autonomy, beneficence, utility, paternalism, and a number of others. All to the good, I thought. Certainly, it helped me to reconsider what I was doing, and I felt that I grew as a result.
In sum, as I complemented my experience with reading and discussion, I discovered that there are deontologists and utilitarians and goodness knows what else. Much of it seemed to take on a quasireligious gestalt, too often orthodox in the extreme, imbued with the arrogance of certainty and not yet testable in the arena. There are few, if any, legitimate clinically controlled trials.
I began to understand a little of why a pejorative perception of paternalism has gained some acceptance. The assertion that "most instances of medical paternalism are unjustified" suggests a certain amount of arrogance in its dogmatic tone.7 There is arrogance, too, in the assumptions of many (most?) physicians about their priestly rights. Little is served, however, in the effort to achieve balance if the arrogance of certainty infects any of the persons involved and if a pejorative note infects the discussion.
There are those who view autonomy and paternalism as opposites. I choose, however, to view them as complements, both essential to the happy fulfillment of the relationship between patient and doctor, related by a constructive tension that is shaped by illness, the degree to which the patient is impaired by illness, and the physician's self-imposed constraint on the paternalistic responsibility. There are, of course, an infinity of variables that contribute to the weighing of these factors. One of the most sensitive of these is the physician's constraint, responsive among many influences to maturity, comfort with uncertainty, urgency, fatigue, societal imposition and, of course, the perception of the patient derived from the physician's attitudes, values, and morals. It is a risky business for the patient, but it is what we have.
Autonomy and paternalism can be mutually reinforcing. The restoration of wellness with the positive intervention of the physician is a justifiably paternalistic act performed on the patient's solicitation and for the patient's good. However, the definition of illness is difficult. I have never been able to give it a sharp edge. Physical impairment is joined in my mind by social, emotional, and political circumstance, jobs and education and housing seem as much or more a part of the needed armamentarium as are drugs and surgery and whatever compassionate care I might be able to offer. This complexity of illness saps autonomy. It is usually the illness, not the physician, that limits the patient's autonomy.4 The physician's paternalistic goal should be to achieve for the patient the utmost of the potential for autonomy.
Thus, paternalism is at times essential to the restoration of autonomy and, at such times, is worth the risk despite the fear of some that it might violate or diminish the expected utility of the patient's autonomy.7 Still, if I behave paternalistically, I have the responsibility to know my patients well, to respect the degree of autonomy they retain at the moment of their solicitation of my advice and their ultimate right to self-determination, and to let that respect discipline my paternalistic behavior. In this regard, it is not necessary to withhold relevant information or to lie and deceive in order to be appropriately paternalistic. The bluster of the domineering Victorian father who "knows best" should be shunned. That behavior invokes the perception of physician as priest, and it is inappropriate. However, to inform, to discuss consequences, and to guide - sometimes firmly, even stubbornly - is not inappropriate.
It is difficult for me to understand another pathway. Really, there is no such thing as a dispassionate interaction with the patient, one in which the values, attitudes, and moral concepts of the physician are put on hold, suspended, leaving absolutely unobstructed the patient's pathway to the full exercise of autonomy, achieving its end in the best utilitarian tradition. There has never been a physician who could enter the arena in suspended animation. It is right, however, to ask the physician to be rigidly disciplined and constrained when personal values threaten to shape behavior.
INFANCY AND CHILDHOOD
Infancy and childhood, like illness, undermine autonomy. They are not "illness" but they are characteristically limited in maturity. Additionally, parenthood allows a range of possibilities in terms of the maturity and religious, social, ethical, and emotional structure of the adult, which may limit the parental autonomy vis-à-vis a child. The hundreds of thousands of foster children (on any given day in this country) are testimony to the state's need to terminate parental authority and to substitute - with what?
The pediatrician is privy to all this, and the child is at the center. If the physician has any societally invested power to act paternalistically for the perceived "good" of a child - and that is the concept within which I was socialized as a pediatrician - the act of being paternal cannot be viewed pejoratively and the power cannot be abused. The tension between autonomy and paternalism thus takes on a particular perspective when the patient is a child. Who, indeed, is to oversee that person's good? Who is to determine and assure "good"? If it is the parents, is it always solely their responsibility? Other questions include: Who is the patient? The child? The parent? The family? What is the contract I have with the patient? What is the patient's expectation? What is my expectation?
We rarely, if ever, make the contract explicit, and the implicit expectations may not, indeed, often do not, mesh. And the failure in negotiations is rarely tested until the circumstance of the moment makes it too late. Urgency and uncertainty have a way of stifling measured discussion. Anticipation has the benefit of establishing greater trust between patient and physician, and of providing the physician greater insight regarding the patient and the limitations on the advice the patient might be seeking.
In my view of what might be called a disciplined paternalism or, perhaps a "motherly paternalism" (or a "paternal motherliness" or "parentism"), I do have the responsibility of setting boundaries to my behavior with the knowledge that my wisdom is limited by my experience and bias and that, at best, it can only be a complement to and not a substitute for that which the patient brings to our interactions. I have already suggested that wisdom is not inherent or assured in those admitted to medical school. Neither is compassion. However, I suggest that much of what physicians do is entirely appropriate, and that we will always be left with some risk of compromising patient autonomy. My view holds that the risk is justified. However, there is no room for naivete or selfrighteousness. I must bear the burden of justification if I appear to invade a patient's autonomy. How not to abuse my responsibility and how to potentiate the autonomy that remains is vital. I try to do it well. And, I reject pejorative considerations when, at times, my decision for action suggests that paternalism is in order.
1. Webster's Third New International Dictionary, Unabridged. Springfield, Mass: MefriamWebsterlnc! 1981.
2. Faden RR, Beauchamp TL, King NMR A History and Theory of Informed Consent. New York, New York: Oxford University Press; 1986.
3. Dworkin G. Paternalism. The Monist. January I972;56:65.
4. Slavney PR1 McHugh PR. Psychiatric Polarities; Methodology and Practice. Baltimore, Md; Johns Hopkins University Pressi 1987.
5. Miller BL. Autonomy and the refusal of life-saving equipment. The Hastings Center Report. 1981:11:24.
6. Kleinig J. Paternalism. Totowa, NJ: Rowman & AUanheld; 1984.
7. Mappcs TA, Zemhaty JS1 eds. A Limited Defense of Paternalism m Medicine m Biomedical Ernia. 2nd ed. New York, NY: McGraw-Hill Publishing Co; 1986.