ETHICS IN THE DOCTOR-PATIENT RELATIONSHIP

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ETHICS IN THE DOCTOR- PATIENT RELATIONSHIP

David H. Smith, PhD

How does one begin to commit heresy publicly? The doubt may have begun as a feeling of dissatisfaction or inconsistency with the orthodoxy of medical ethics. It grew into a list of self-convincing arguments rehearsed over and over again in imaginary speeches. It was reinforced by watching what was happening to patients.

But how can you come right out and say in print that you believe that practices we have fought for and worked to implement have led to a lower level of ethical standard than we should accept, that they have even undermined the very objectives that led to their conception? You have tried out the arguments on colleagues and friends only to hear them say after all the carefully planned reasons have been expressed, ”. . . but you are saying you are against living wills and informed consent! How can you do that?” And you thought you had just ex- plained. What does the heretic have to do to get the issues considered rather than just have the heresy identified? Would an assurance that the author is on the side of the angels be helpful? Would it help to make an outright appeal to the reader to suspend judgment and not dismiss the conclusions because sacred cows are to be trampled? (Perhaps better not to mix metaphors in the process.) Maybe some stream-of-consciousness rambling would do.

This article considers the ethics of the doctor-patient relationship. It argues that the pursuit of patient autonomy has been misguided. That pursuit has achieved an ethics in practice that revolves around the signing and filing of pieces of paper. These papers can be obtained without involving the physician and the patient together, and without concern for the possibility of creating understanding between them. In

From Hong Kong Baptist University, Kowloon Tong, Hong Kong

CRITICAL CARE CLINICS

VOLUME 12 * NUMBER 1 TANUARY 1996 179

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offering these arguments this article summarizes some of the historical reasons that have led to current practices, and it will offer as an alternative an ethic of process rather than of product, an ethic of relationship and not decision. The reader who is able to allow the argument to spin its full course may find some of the conclusions appealing and be tempted to join in at least part of the heresy.

THE RISE OF INDIVIDUALISM

Although we like to think of America as the land of the frontier, fearless pioneers, and rugged individualism, the most dramatic rise in individualistic values came not in the wild west but after World War 11. Shortly after the vets on the GI Bill filled the colleges and we discovered that Stalin wasn’t really our Uncle Joe, the reaction against conformity set in. Gregory Peck starred as the best seller The Man in the Gray FIanneZ Suit became a movie hit. Sociologists David Reismann, Nathan Glazer, and Reul Denney wrote The Lonely Crowd, in which they described three types of persons.28 The first type, the ”inner directed,” were largely creatures of the past, driven by a rigid, inflexible, moral gyroscope. The “other directed” appeared to be most numerous and had no core values of their own, responded only to the opinions of others. The “autonomous” persons, whose sensitivity transcended the rigidity of inner directedness, were able to pursue individually selected values and not just follow the crowd. We were admonished to be autonomous.

It was in this general milieu that Joe McCarthy rose and fell. His national witch hunt for those who did not follow political orthodoxy ended when a New England lawyer, Joseph Welch, exposed the self- serving intolerance that had made political martyrs of writers, artists, and intellectuals who had thought differently, even if occasionally fool- ishly. “McCarthyism” became clearly a bad thing, a stick with which to beat attempts to reign in individual thought, expression, life style, or media content. Difference and dissent were to be not only tolerated but also celebrated. The civil rights movement began to demand that the individual mattered regardless of race. Orval Faubus, George Wallace, and Bull Comer had to make way for individual opportunity even in baseball. Voting rights were guaranteed by federal law. Although racism did not disappear, it had to go underground, decried whenever it appeared openly. With John Kennedy’s election as president, open reli- gious discrimination received a mortal blow. The first foreshadowing occurred of what was to become the feminist movement for treating women as individuals. That was to be followed by campaigns for individual rights for the handicapped and those of non-majority sexual preference. Even into the 1990s the rhetoric of individual rights, derived from the civil rights movement, is a powerful way to enlist public support. It has found its way into medical ethics in the call for patients’ rights.

As the 1950s gave way to the 1960s and Elvis, John, Paul, George,

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and Ringo became household names, personal individualism continued to rise. Past fashion and values were rejected as the great baby boomer bulge took the nation through its adolescence with them. They chose their values, their costumes, their sexual mores, their music, and their abusable substances not from their parents and communities, but from each other. They chose to be different, ”to do their own thing” (although they looked and sounded a lot alike in their desire to be unique). The acceptable variation in dress and social behavior broadened greatly as we learned that there were such things as ”life styles.” Hemlines and hair no longer had to be the same length for everybody. We decided that marriage should be individually fulfilling and could be disrupted not just for cruelty or infidelity, but also for irreconcilable differences. We even accepted individual responsibility for our own orgasms.

Although pacificism had always argued that war was immoral and that a higher morality could be the basis for refusing military service, a new argument was offered, that the individual could choose which of the nations’ conflicts to fight in. The citizen, not the society collectively through democratically chosen representatives, was to be the arbiter of what foreign policy was morally supportable. Young men, given information and advice through an informally linked system of counsel- ing, fled and hid to escape fighting in a war that they argued was, in their individual judgment, immoral.

In the economy, consumerism was on the rise. The individual gained the right to be fairly treated and to buy safe and effective products. Ralph Nader campaigned against the Pinto. The number of brand names of particular products increased by hundreds-fold. More choices were offered. ”Service” became the byword of business. The individual must be pleased. Comment cards appeared on restaurant tables, in hotel rooms, and in utility bills, seeking the feedback of individuals on services. Survey research exploded. In mass communication the few large circulation magazines such as Life and Look ceased publication, but more magazines than ever were purchased by the public. Specialized magazines such as Runner’s World and Audiophile targeted to individual interests appeared. Radio stations began broad- casting only one kind of programming to appeal to individual tastes, and we got oldies stations, talk show stations, all-news stations, classical stations, easy listening stations, and the like. With the advent of cable, TV has followed suit.

In the workplace so-called new values workers demanded that their work be individually fulfilling and not just paid. Management theorists embraced participative management practices, and workers were invited into making decisions they had earlier been allowed only to accept. Quality circles formalized the practice. Business and even government began to decentralize. Opportunities for public hearings and individual comment on potential governmental policies were created. Organiza- tions were flattened to reduce hierarchy. Managers walked around to keep in touch with individual employees whose knowledge was thought to be valuable.

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When Tom Wolfe turned his pen to the growth of individualism, he dubbed it the ”me generat i~n.”~~ He argued that only the rich had ever been able to afford to be self-centered; the others were too busy getting by. The increasing affluence of American society now made it possible for almost everyone to become self-focused. He found the advertising slogan, “If I only have one life to live, let me live it as a blonde,” to best characterize the times. The individual could be self- remade. Other generations, he stressed, had always felt they lived more than one life, including lives to make the world better for their children, their community, their people, their cause, or their profession. But now one’s own life was the one that mattered. An individualistically based popular elitism was the result, in which most persons felt entitled to enjoy good wines, take winter vacations, eat gourmet food, be massaged, wear designer clothes, and otherwise pursue activities formerly reserved for the social and financial elite.

Expertise and authority have lost what blind acceptance they once had. The exercise of fatherly authority has become the sin of paternalism. Priests, professors, officials, accountants, and lawyers are all called into question. Individuals challenge authority in the courts and to complaint boards and bodies. Customer relations departments are the euphemism for adjusting policy to individuals who are dissatisfied.

Where once mental health had meant being well adjusted (to others and society) and learning to cope, it now became self-fulfillment. We all seem entitled to a positive self-image; we explain antisocial behavior by its absence. We want to talk about ourselves. We go to groups to talk with others who are like us in some way. Maturity has become not settling into a community and career, but developing self-knowledge and responding to it. We want to know what is going on, how it affects us, and to be able to say what we think of it.

It is only recently that we have begun to wonder at the loss to family, community, civility, and safety that has accompanied the rise of individualism.‘, Leaders of less individualistic societies point to these costs as they question whether they want to pursue the American social model while they seek to emulate our economic success.

For a longer time than for almost any other institution, medicine was exempt from this individualistic revolution. The shortage of physicians and the rapid growth of specialization meant that doctors’ authority remained unchallenged longer than that of the other professions. Offices and hospitals adopted analogues to mass production techniques. Patients were expected to wait patiently and gratefully for the chance for treatment, often from specialists they had never met. House calls disappeared from practice into the repertoire of comic punch lines and nostalgic reminiscences for a kind of family doctor that had never really existed.

The increase in population mobility meant that long-term doctor- patient relationships became fewer. The nation admired Marcus Welby and Ben Casey as fictional ideal types but didn’t really expect to meet them in the examining room or hospital. The growth of medical technol-


ogy brought miracles of healing into every family. Advances in drug therapy, surgical techniques, immunization, and emergency care came with dizzying speed. When doctors cured the previously incurable, saved previously unsavable lives, and enabled the injured and chroni- cally ill to live well again, it seemed ungrateful to challenge the nature of medical practice.

The medical insurance system guaranteed profitability and continued expansion of hospital facilities. Doctors’ incomes soared to levels never imagined by their forbearers, who a century earlier had sought only respectability and the acceptance of medicine over quackery, not wealth. Despite the profession’s fears of socialized medicine, Medicare became a financial boon, ensuring that those most in need of care could also pay for it. Fewer bills needed to be written off. Meanwhile, most doctors continued to be men helped by nurses, most of whom were women.

The same forces that individualized the rest of society gradually affected medicine as well. In addition, the supply and demand cycle changed directions. As the number of physicians grew, the scarcity diminished and elements of competition began to appear. As health care costs soared, employers began to bargain with physicians and hospitals for lower rates, sometimes through collective grouping of companies. Hospitals no longer enjoyed cost-plus reimbursement from the government and insurers. New forms of cooperation and practice organization developed.

The success of the women’s movement meant that more talented young women became physicians, and that nurses demanded more respect for their expertise. The leaders of the consumers’ movement began to demand more patient-responsive health care as well. Physicians from the baby boom generation brought their own individualistic orientation into medicine with them. Some kept their idealism. The profession learned to tolerate a wider range of opinions and less uniformity in physical appearance and demeanor.

The challenge to expertise through complaint and litigation expanded to medicine, bringing the change least welcomed by the medical profession, the increasing psychologic and financial costs of malpractice law suits. These were not welcomed as a wholesome expression of growing individualism, but were regarded as threats to physician expertise, moral authority, and financial security. No other single topic so pervaded the conversations of doctors.

This overview of the shift toward individualism in the values of America after World War I1 is not a thorough or complete reflection of history. But it does contain enough evidence of that shift to remind us of the context in which the doctor-patient relationship has been reconstructed. Individuals now matter in ways they did not just 50 years ago. The forces that changed the whole society could not have been kept out of the examining room or the hospital, and they were not. They created the setting in which the present state of that relationship developed. The next section of this article comments on two forces that

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shaped the doctor-patient relationship, a reconstruction I will criticize as having taken us in the wrong direction and having defeated its own ends.

AUTONOMY AND INFORMED CONSENT

The idea of patient autonomy and its extension into the idea of informed consent does not have its primary roots in traditional medical values. The overarching values of doing no harm and acting in the patient's interest (beneficence) have dominated medicine. Rather, it was the law that nurtured the idea of informed consent. In 1905 an Illinois Appellate Court in Pratt v. Davis forbade doctors to violate the "bodily integrity" of the patient without permi~sion.~~ Nine years later in Schleon- dorfj v. The Society of New York Hospital, the US Supreme Court said that "Every human being of adult years and sound mind has a right to determine what shall be done with his own body and a surgeon who performs an operation without his patient's consent commits an assault for which he is liable in darn age^."^^ Thus, the concept of consent became central in discussions of the doctor-patient relationship, at least as far as the performing of procedures is concerned.

But it was not until the era of rising individualism 43 years later that the concept of information was tied to consent. In 1957, a California court held in Salgo v. The Leland Stanford Jr. University Board of Trustees that patients who are not informed about that to which they consent have not given valid consent.29 Other cases followed in state after state. The linkage has been accepted and implemented. Thus, the courts brought recognition of patients as important participants in decisions about their own care and specified that there was at least a minimal requirement for communication with the patient, that being a presenta- tion of information.

With informed consent having its roots in the law, it is not surprising that the idea was implemented through legalistic approaches. Most of us have been told by teachers or books that valid informed consent requires the "disclosure" of risks and benefits so that a "reasonable" person would understand them in a context in which the patient is "free to refuse" treatment. Here, the three legal standards are included: disclosure, the reasonable person standard, and voluntary choice.

The securing of such consent has become routine, indeed so routine that it is usually reduced to the completing of a consent form often at the request of the most junior member of the health care team. The procedure is called "consenting the patient." The central effort is getting the form signed and filed, so that it can be used as legal evidence of informed consent should it be needed. To consent forms, DNR forms and various other advanced directives have been added. With the addition of the legal requirement by the federal government that virtually mandates hospitals to ask patients about living wills, obtaining the signature has been, in many instances, assigned to the admitting clerk. One can imag-


ine the conversation: ”What is your home address? Who is your next of kin? What is your health insurance number? Please sign this form saying that you are personally liable for any costs if your insurance company won’t pay them. Please sign this form giving us blanket permission to treat you. And, by the way, do you have a living will? If not, please sign this form.”

Consent thus obtained, completely outside the doctor-patient relationship, is satisfactory because the legal requirements have been ful- filled. A piece of paper is on file. The lawyers and their bureaucratic counterparts, the quality control and risk managers, have been satisfied. A doctrine developed out of sound ethical arguments in the courts has been implemented in the only way one could expect lawyers seeking to eliminate any possibility of law suits would have developed it. The lawyers are seeking maximum legal defensibility for the hospital and physician, not the best interests of the patient.

In a like manner, the living will has been a legalistic response to the fear of large numbers of patients that more technology than they want will be used on them when they are terminally ill. From the legal point of view, state laws permitting living wills are really protection for physicians. The doctor cannot be sued for failing to treat if directed not to treat by the patient. Nothing in the moral arguments for withholding such treatment requires that it be in writing, but the legal and bureaucratic systems thrive on having the paper on file. So forms are signed. Several years ago when the Florida Bar and Medical Society combined their efforts to offer living will forms to the public, the supply was quickly exhausted and had to reprinted. Large numbers of persons felt a security in the document they did not feel in their relationship with their physicians. Lawyers present forms to clients to be signed and kept with other personal legal documents. The clients pay the fee, all in hope of influencing their own future care.

THE BlOETHlCS MOVEMENT

It was not only the growth of individualistic values that led to the development of the bioethics movement in the United States. Engle- hardt” lists three factors in addition: the growth of technology, rising costs of care, and the development of societal value pluralism. It was the development of transplantation techniques, he argues, that made redefinition of death necessary. Certainly as technology extended the possibilities for treatment, questions of the wisdom of treatment increased. And the increasing technology also created a longing for a balancing of technology with human concern. The growth in the costs of care brought renewed attention to the allocation of health care resources. The increasing toleration of differences meant that doctors and patients might not share the same values and might be moral as well as personal strangers. Doctors could no longer assume that patients were like themselves.

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But the most dramatic force leading to the rise of bioethics was the publicity given to cases of dramatic moral lapses in medical research. The Tuskegee Experiment may be the most famous, but The Jewish Chronic Disease Hospital and Willowbrook were also among the cases that led government to examine the ethics of medical research. After the outrage generated by Nazi atrocities performed on nonconsenting patients, social tolerance for research that even suggested a similarity was unthinkable. The establishment of procedural requirements for the ethical treatment of human subjects, particularly for consent, rapidly became institutionalized into Institutional Review Boards. The concern for ethics soon expanded into ethics in practice with the appointment of a Presidential Commission, the establishment of various ethics centers, and the addition of ethicists to some medical school faculties. The movement grew. Journals and professional societies were established. Centers multiplied. Ethics committees sprouted in hospitals and clinics. Professional ethics consultants offered their services. Bioethics became a growth industry.

Initially the ethicists were drawn from scholars already studying ethics in religion and philosophy, from the law, from medicine itself, and from a scattering of other backgrounds. Their fundamental approach was philosophic, drawing on the established method of ethical writing and research that sought to develop sets of principles or ethical codes through the examination of difficult cases, often quite unusual, and far removed from experience. This effort took place in the context of rapidly increasing individualism, with an awareness of the use of the common law tradition of individual rights in the informed consent cases, and involving scholars familiar with the Kantian doctrine of respect for persons. It is not then surprising that, among the general principles around which the teaching in bioethics was organized, autonomy was first.l6, 27 And autonomy by convention came to mean informed consent in the doctor-patient relationship.

CRITIQUE OF INFORMED CONSENT

How can one object to informed consent? Let us examine the two terms independently to discover what theoretic baggage they brought with them to the effort to rebuild the doctor-patient relationship. Restor- ing trust and communion between doctor and patient was indeed the goal of the judges who first set forth the connection between information and consent. They wanted to rejoin doctors and patients, but it has not really worked out that way. Reliance on informed consent as the mechanism has proved unwise.

Consent requires only a minimal level of participation. The doctor says "I want to operate on your spleen. Is that OK?" The role of the patient is reduced to saying "yes" or "no." As a method of implement- ing autonomy it does not go very far. Consent does not offer alternatives, seek suggestions, invite exploration of possibilities, or enter into a prob-


lem-solving dialogue. It just wants permission to go ahead. If some sharing of decisions was envisioned by the introduction of informed consent, only a little such sharing is required, and the emphasis on form-signing as consent in actual usage has meant that even that goal has not necessarily been achieved.

Consent also envisions the making of single big decisions: consent for major surgery; consent for experimental treatment; and consent to withhold treatment at the end of life. It imagines that recognition of patient autonomy need be made only in occasional circumstances. It misses the ongoing, process nature of medical decisions. In practice, a number of interlocking decisions are made over the course of an illness. One follows another, is influenced by past decisions, and influences future possibilities. The ongoing process creates a relationship that influences subsequent decisions that continually recreate the relationship.

For hospitalized patients it is easy to see how a decision to initiate a treatment may influence the decision to withdraw it. It should also be apparent that a patient’s reaction in the discussion of one treatment may influence the likelihood that a subsequent one will be offered. It is even possible that whether the staff finds a patient likable and socially useful may influence the consideration of treatment options and the way they are discussed. In outpatient settings the examples may be less dramatic, but the doctor may not be forthcoming with a patient who has seemed in the past to monopolize his or her time. A complex treatment requiring much explanation and careful patient implementation may not be offered to a patient with a record of presumed noncompliance. A doctor who has seen a patient or family member through a life-threatening illness may talk and be talked to differently in future visits.

In the critical care unit many highly intrusive procedures have to be performed. We do not ask consent for most of them because one follows logically from the other. We do not ask permission each time we change an intravenous drip or draw blood. Each small decision limits or extends the possibilities for subsequent treatments. When the medical team decides to consider the limitation of treatment or the undertaking of a major surgery, it is not because of a single event, but because of a series of attempts and responses over time. Yet the consent approach recognizes only the most dramatic decisions, as if they occur in isolation from other decisions or from the relationships that have developed.

Consent regards the decision as a product. “What is the decision?” ”Does the patient consent to the decision?” The decision is an entity that appears to stand alone and apart from the persons who made it and from the process in which it is embedded. The decision is the evidence of a task accomplished, a job done. It has been made, produced. Yet research on transcripts of decision-making groups does not reveal decision points. We know that deciding has occurred only as the participants refer to problems in retrospect as already solved.12 It is difficult to differentiate decisions from the process of talk in which they were

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embedded. Asking "who should decide" makes the act of deciding seem important, but the process of talk may matter more.

Consent also assumes that the treatment decision is made, and consequently that someone makes it. The result has been an emphasis on power. Consent was thought to empower the patient. That focus can mislead in two ways. First, it may assume that the amount of control is fixed, exercised either by the physician or the patient. Careful observa- tion of the exercise of power in organizations and societies, however, indicates that it is possible to increase the total amount of influence by increasing the degree to which everyone participate^.'^ An apathetic group or community is one in which no one tries to exercise control. In a highly involved group or community, more influence attempts are made and the total amount of power exercised increases. Surely that is the case in the physician-patient relationship. A physician does not necessarily have less power simply because of an invitation to the patient to share in decisions. If control is not fixed, we need hardly worry about who gets to exercise it. Instead, we can think about how to increase the total amount of control available in the relationship. Second, a focus on power and control may mistake deciding for controlling. If the patient fails to carry out a treatment a doctor has ordered, the doctor is hardly powerful. Noncompliance frustrates precisely because doctors feel pow- erless. A paradox seems to be at work. One who would control must invite control. When one is open to influence, one is more likely to be infl~ential.~~

If the idea of "consent" is problematic, so is its partner, "informed." It begins with the false assumption that persons can and should decide important matters on the basis of information rather than emotion. This posture is comfortable for philosophers who try to rely on what they hope are rational arguments. Lawyers may also be comfortable with the formal marshalling of evidence and reasons. But for social scientists and physicians, who actually watch what individuals do, it is impossible to imagine persons worrying about living and dying in the absence of emotion and human relationships. It does not often appear to happen, and when it does, the apparently rational person may be really denying emotions more powerful than can be controlled if admitted. Do we really expect to be able to discuss information dispassionately with the patient who has been told, "You have breast cancer," "You are HIV positive," or "This operation is your only chance to survive"? There is an outdated mind-body dualism at the heart of the notion that we can separate emotion from reason in decision making about such crucial matters as those for which we seek consent. We are total persons responding totally. Our reason and emotion coexist. We cannot set one aside to talk about or decide only on one. Attempts to do so are rationalistic, not rational. If emotion and reason come together, a theory of communication based only on information can hardly fit the experiences of doctors and patients.

Not only does the attention to information as the key to communication in informed consent assume a rationality not present in human


behavior, but it also assumes that information can be readily transmitted from one person to another. This is especially problematic for both the expert physician knowledgeable about the patient’s condition and the patient whose knowledge base may be enormously variable but will never approach that of the doctor. Persons do not receive little data packets from each other. Physically, all we do when we talk is to stir up the air outside each other’s ears. Whatever meaning we assign to the pressure pulsations on our ear drums is determined by what is already inside of us. Our experience, our knowledge, and our feelings all come into play as we interpret what another has said. To the extent that we share a common cultural and linguistic system with the other, similar approximations may be possible. But unshared parts of us also limit the degree to which that happens. Communication cannot ever be just about information. Decision cannot be based on information separated from the rest of who we are.

Similarly, the communication envisioned by informed consent assumes a separation between communicators that is impossible. Every communication is about both content (the subject discussed) and relationship (what we are to each other).34 We always listen for the subtext in what is said that tells us whether we are liked, respected, accepted, and appreciated by the person speaking. We reveal our sentiments about the other we speak to as well. The relational dimensions are often the most powerful, because they express the connectedness that makes communication possible. They provide the frame in which content is interpreted. That is why the patient’s trust for the physician is crucial. If the patient does not believe the doctor is competent or honest, no information will be taken as the doctor has expressed it. Consider the fear and mistrust by African-Americans of the predominantly white medical profession. This fear is founded on both fact and fantasy.12” It stems from a history of abuses such as the Tuskegee experiments, and from documented unequal access to medical resources.12a For example, organ allocation policy may contribute to reduced access by African- Americans to cadaveric renal transplants, despite the higher incidence of end-stage renal disease in African-Americans.’O” Such suspicion unfor- tunately may reduce further access by reducing the willingness of Afri- can-Americans to participate in researchlZa and organ donation (see the article by Arnold et a1 elsewhere in this issue).22a No amount of information can solve the problem in the absence of trust. It is a relational issue.

Patients’ belief that their doctors care about them as individuals may be the most powerful influence on whether a doctor’s recommendation is followed. An analysis of patient narratives about experiences in medical care reveals that they want to be involved in the decision making onZy if they feel the physician has not gained an understanding and appreciation of who they are as persons. In the presence of that relationship, the decision itself is not pr~blematic .~~ Lerman et all9 looked at types of involvement and found that patients’ beliefs that they had been listened to, informed, and provided the opportunity to express opinions influenced satisfaction more than perceptions that they had participated

in decisions. Lerman’s subjects were satisfied from being involved more than from helping make decisions. Patients may want to be part of the conversation in order to be treated and felt known as individuals, to be taken into account as persons, and to have loneliness and isolation ameliorated. They may use participation to gain recognition and contact, not to gain information and make decisions. This is so because communication involves both content and relational dimensions. Looking at it as information transfer misses its very nature.

The folly of the information assumption finds its most extreme expression in the consent form for participation in experimental treatment. The amount of information contained, the language with which it is expressed, and the sheer length of the documents often combine to guarantee that no patient will read all the disclosure. The amount of information overwhelms, and the patient must fall back on trust. Con- sent is given when the doctor says “yes“ when asked ”Doctor, do you recommend that I do this? Would you do it if you were me?” Does anyone really believe that it is information that drives such consent? The communicative demands go beyond the information idea.

Nor is it accurate to see the doctor and patient as completely separate, as one informing the other and getting consent seems to assume. As the relational dimension of their communication develops a history over time, doctors and patients get to know each other. No conversation about a treatment choice can exist outside of that relational context. They have become connected. It is this connectedness that patients prize. They want to be known and cared about. But the connection means that the patient’s choice will inevitably be influenced by what the doctor wants. The choice cannot be autonomous. Influence and information are not separable because they come in a relational context. In struggling with the proper role for physician influence, the President’s Commission at one point suggests that the doctor take great care in use of phrasing and tone of voice so as not to unduly influence the patient.= But it is precisely involvement and influence that patients seek. The assumption of separateness fits neither the doctor-patient relationship nor most human interaction.

This is especially important because doctors and patients do not meet with equal roles. The doctor has authority, access to treatment resources, and expertise. The patient is equal in none of these. Devel- oping a relationship that allows the patient to draw on these in a context of trust and caring becomes the goal of the patient. The patient needs to find a way to use these physician qualities but cannot do so in a symmetric way. The physician’s greater expertise and skill are always present. And the patient is ill, often very ill. The patient’s ability to exercise autonomy may be compromised by weakness, fatigue, and fear. The patient, therefore, resists attempts to be separated from the doctor. Even when the patient does not say, ”You decide, doctor,” patients seldom question the doctor’s recommendation. They seldom seek or exercise an independent role.

The method of communication recommended by informed consent


is disclosure by the doctor of risks and benefits. Disclosure seems a strange term to use to describe how doctors and patients should talk to each other. It is as though the doctor has been deliberately hiding something, playing the cards close to the vest, only to come to the moment when the facts must be revealed. Such a pattern would seem odd, and certainly inconsistent with an ongoing relationship full of openness and understanding. It would only be for such limited conversations that their essence could be captured in the typical informed consent document. Yet we are to assume that the document tells us what happened. In good doctor-patient communication so much more has happened that no document could capture it. But, of course, the form does not exist for either the relationship or the communication that reconstitutes the relationship on an ongoing basis. The document is for the files, for the lawyers and risk managers. It is made available to provide cover for the legal backside. How can we expect to derive an adequate ethic for the doctor-patient relationship from such a base?

LIVING WILLS

I will consider living wills more briefly, only to show that the extension of consent into advanced directives is also problematic. The living will, along with other advance directives, tries to apply informed consent to instances in which the patient is unable to give consent by anticipating those situations before they actually occur. The legal anal- ogy from which the terminology is derived seems odd. It is not immediately apparent how the individual’s wishes about treatment are like those concerning the distribution of property after death. The similarity seems only to be that wishes are expressed in advance and recorded for later use. Two aspects seem immediately problematic: (1) How likely are wishes in advance of experience to reflect choices once the experience occurs? (2) How useful is the recording of such wishes in advance?

Most of what I have experienced is not what I thought it would be. Adulthood is not what I imagined as a child. Marriage was different from my anticipation. The new city is not quite what I expected. I was never going to fall asleep in my chair in the evening like my father, but I have even caught my sons doing it. The differences are in many ways better than I had expected, but a bit surprising nonetheless. How, in the face of that pattern of learning, can I have faith that I know what it will be like to be terminally ill? Can my knowledge now be sufficient to express what I will want then? A physician friend of mine told me of his Alzheimer’s patient with circulatory difficulty. On one of the man’s good days the physician asked him about an advanced directive, fully expecting the patient’s ready assent. The patient replied: “You know I get to see my wife everyday.” That was enough to balance all the disorientation and illness. Perhaps I too will be willing to settle for less than I now anticipate when I become ill in one of these ways we all fear.

I also am not sure that I can now anticipate all the contingencies

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that will accompany that illness. Where will I be? Who will be with me? Will I know and be known by my doctor? What treatment options will there be? Will I still have good relationships with those I now specify to decide for me? What will my world be like outside of illness? Can I be sure that this piece of paper, now on file in my lawyer’s vault half way around the world, will be known about, much less accessible when I need it? By definition, I won’t be able to let anyone know. Even if I were in the same city as my lawyer, the likelihood that the living will would be on my person when I am taken to the emergency room seems small. Nor does it give very detailed instructions. When I say extraordinary treatment, do I mean a respirator? They seem pretty ordinary in the hospitals I’ve been in. I’m not sure I want to be intubated, but the will doesn’t mention that. It seems quite likely that I have missed something that may happen.

Perhaps we ask too much in trying to control the future. The living will, like informed consent, focuses on the decision, not the process or the relationship. It repeats the problems of informed consent from which it has been derived.

How did we come to invest so much time and energy in a way of improving the doctor-patient relationship that is so fraught with limitations? Because we began with the idea of autonomy as the primary principle to be implemented. We invoke a system that separates doctors from patients. We began with an idea that concentrated on that separation. The idea of individualism was in the air. The image of patients being harmed by paternalistic physicians was persuasive. The time was right. The rhetoric was right. Ironically, at a time when doctors’ resent- ment of lawyers was soaring, medicine adopted a legalistically based approach on which to ground its relationship with patients. Policies have been written, forms printed, courses given, procedures implemented, and a bureaucracy created to ensure that informed consent takes place, or at least to get the forms filed.

SHARED DECISION MAKING

Fortunately, not all doctors followed the lead of the informed consent movement. Many who had always prided themselves on their relationship with their patients continued to talk with them as they had before. Others pursued the value of shared decision making and mutuality that is the base for the doctor-patient relationship. That idea has much more to recommend it than does informed consent, but consent has received the attention and generated a program of implementation. The idea of shared decision making will be helpful as long as we focus on the sharing and allow the decision making to follow naturally. Shared decision making has received a good deal of attention. The President’s Commission recommended it.25 It rejected the choice between physician paternalism and patient sovereignty in favor of a continuum, with mutuality as the medial and preferred relationship. Brody4 argued for


mutuality on six ethical grounds: (1) It makes medical practice more effective by reducing the traditional imbalance of power between physician and patient. (2) It is consistent with a growing awareness of the limitation of clinical knowledge. (3) It benefits patient self-esteem at a time when illness attacks just that feeling of control. (4) It enhances the doctor-patient relationship by diminishing the tendency to view patients as objects to be manipulated. (5) It provides patients with more realistic expectations. (6) It may improve the outcome of treatment.

Quillz6 advocated a contractual view of the doctor-patient relationship. The consensual nature of the contract between two autonomous parties requires mutual negotiation to define the conditions of the contract. Smith and P e t t e g r e ~ ~ ~ suggest that mutuality is necessary to make ethical the influence process in the doctor-patient relationship. The idea of an ethics of connections that focuses on human relationships is strongly fostered by writers who consider ethics and gender. It is the feminine side in all of us that stresses connections between persons. The separation fostered by informed consent is overly masculine according to these writers.13, 22

Two lines of research have pointed to the importance of mutuality in the doctor-patient relationship: research on patient satisfaction and research on health outcomes. Patients were more satisfied when they participated in decisions about their care.5 Primary care patients who had an opportunity to express their opinions and discuss life stress with their doctors were more satisfied.6 Participation in alternative perinatal care increased patient satisfaction.20

Patients with stage D prostate cancer who were active in the decisions were ~atisfied.~ Lerman et all9 developed a measure of various dimensions of patient involvement and found that patient perceptions of physician efforts to facilitate and encourage participation contributed to satisfaction. Patients in these studies were more satisfied with their medical care when they participated actively. If making patients satisfied is an important goal, encouraging their participation seems a good way to achieve it.

Health outcomes also improve when patients participate. Patients active in managing their hypertension were more compliant and had decreased blood pressure.I4 Participating patients were more likely to have their blood pressures under control and have more positive behavioral and cognitive responses to illness management.30 Outcomes improved, and parents who shared in decisions about treating their childrens' otitis media were more willing to delay antibiotic therapy and accept the self-limiting nature of the disease.23 Thorough mutual discussions of patient headaches at first visits were the best predictors of later pain-free states.15 Health status improved for patients with ulcers, hypertension, and diabetes who participated actively.'* If medical outcomes are better when patients participate, the argument for mutuality becomes even stronger.

The question of the role patients want in decision making has been an interesting one. One stream of research posed the question as a

194 SMITH

choice between deciding and delegating; another asked whether patients wanted to participate. The results of the two streams seemed contradic- tory. The first found that patients preferred to delegate, and the second that they preferred to participate. A study designed to compare the two streams in a single study found that the preference for delegation holds only in the absence of the choice to share. Mutuality was preferred by subjects in the United States, The United Kingdom, and Australia.33

BUILDING SHARING RELATIONSHIPS

How does one foster a mutually participative relationship with the patient? First, stop focusing on the treatment decision as the central topic for conversation, and try to find out what the illness experience is like for the patient. Persons construct for themselves stories of their own experiences, including stories of their illness. It is in these stories that patients’ values and understandings can be f ~ u n d . ~ , ~ Ask the patient to tell you how this experience seems, what is happening, and how it is connected with the rest of the patient’s life. Learn what the patient is worrying about. You may be surprised. One bone marrow transplant program, convinced that informed consent was vital, spent hours ex- plaining the technical details of the treatment and other options. When the patient was then allowed to ask questions, she said, “Will my hair fall out and will my insurance pay for this?” Her concerns were not what her doctors had anticipated. They came from her life.

Medical students almost always tell me they find it difficult to talk to patients about death. That is not my experience. Although students usually begin with the topic of a consent form or DNR order, I begin with the question, “How do you think all this is going to turn out?” The patient will almost always reply, ”Oh, I know I am going to die.” ”What,” I then ask, ”runs through your head when you think about that?” Patients then tell me about unfinished personal business they want to attend to, relationship rifts they want to mend, places they want to see one more time, or that they would rather die at home than in an ICU. They ask questions such as the following: ”How will I know when I am about to die?” “Will it hurt?” “Can you fix it so I won’t have to die alone?” If they do not say ”Do I have to have all those machines and tubes?”, I will ask, ”Have you thought about how much you want the doctors to do for you as death gets close?” Only then are they ready to worry about the DNR. Patients’ comments and questions are often new and surprising, because they come from what they bring to our conversation. Listening for their agendas allows sharing and mutuality. Decisions then flow naturally.

Talk about little things with the patient. One of the ways we show other individuals that we value them is to involve them in small talk about everyday matters. It is to those we know best that we talk about everyday events and our responses to them: what happened on the way to the office; that we forget where we parked the car; another friend’s


amusing reaction to a news headline; and how worried we are about telling Mom that we’re going to move away from the home city. A caring relationship often develops out of non-illness oriented talk. ”My doctor told me a joke today.” Or ”Bob, my doctor was interested in that cottage we used to own up at the lake.” Patients have lives, not just illnesses. An expressed interest in their lives expresses a concern for them as persons, not just as objects on which to employ medical expertise. Doctor friends of mine sometimes tell me of the pleasure they derive from talking with their patients. One who returned to practice after several years in full-time administration told me of an elderly patient able to tell him about fighting alongside the White Russians as part of the US Expeditionary Force in Russia after World War I. Another had won a Pulitzer Prize. Can anyone doubt that these patients recog- nized their doctor’s interest in them as persons, and that the relationship and decisions flowed more smoothly as a result?

Parts of patients’ agendas will often be emotional. There will be fear, sadness, and regret. Being open to hearing those emotions expressed is part of showing care and compassion. Too often we assume that when a patient expresses fear or sadness, we have to do something to make it go away. Just listening in an open, accepting manner is usually the most helpful thing you can do. Being truly heard is an unusual experience for most people. Having their physicians attend to their concerns is thera- peutic in itself. They will feel better for having told you how they feel, and they will see that you care about them because you are willing to listen. Action may be needed, but listening always comes first.

If you share small day-by-day matters with your patients, the larger critical decisions will take care of themselves because of the process of communication that is ongoing in a positive doctor-patient relationship. Try to set aside the powerful drive to explain that derives from the desire to inform, and substitute a sensitivity to the process dimension of the doctor-patient relationship. Watch understanding and mutual regard unfold for yourself and your patient. Regarding the patient as an end, not only a means, can be most practical in this way. An ethic of relationship, not decision, becomes enacted as the connection between doctor and patient becomes of first importance. How much further we would be if all the energy and effort directed toward informed consent had been directed instead toward learning how to foster mutuality, toward nurturing an ethic of relationship that connects doctor and patient.

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WW Norton, 1967

Mad Men, Clutter and Vine. New York, Straus and Giroux, 1976

Address reprint requests to David H. Smith, PhD

Hong Kong Baptist University 224 Waterloo Road

Kowloon Tong, Hong Kong

Documents

ETHICS IN THE DOCTOR-PATIENT RELATIONSHIP