Professional Codes of Conduct

Guidelines for the professional behavior of medical practitioners have been promulgated for at least 4000 years, according to writings from ancient Egypt and Mesopotamia. The comparatively recent Oath attributed to Hippocrates (460-380 b.c.) is among the most famous, but other prominent medical writers such as Galen and Maimonides offered advice on privacy, duty to patients, and end-of-life issues.¹ Such guidelines express values common to medical practitioners, but they also serve to elevate the standing of medicine as a profession and not a mere vocation. For example, the American Medical Association was founded in 1847 in part to restrain unseemly competition among medical practitioners; that same year, the association’s leadership disseminated a code of appropriate behavior for medical practitioners that included rules for referrals and fee splitting.²

Since the early 1980s, a surge of interest in professional behavior has led a number of organizations to develop codes of conduct for health care providers (Table 28-1). The European Federation of Internal Medicine, the American College of Physicians–American Society of Internal Medicine, and American Board of Internal Medicine, for example, collaborated to publish a physician charter outlining principles to which “all medical professionals can and should aspire.”³ As in similar documents since the 1950s, the physician charter focused on principles that many argue provide the foundation for medical practice: beneficence, autonomy, privacy, and social justice or equity. Rules of professional behavior described in these or similar principles are now being integrated more fully into the training and accreditation of physicians; examples include recommendations and requirements of the Accreditation Council for Graduate Medical Education, the Association of American Medical Colleges, and the National Board of Medical Examiners.⁴

TABLE 28-1 Professionalism According to Medical Institutions⁴

AAMC, American Association of Medical Colleges; ABIM, American Board of Internal Medicine; ACP-ASIM, American College of Physicians–American Society of Internal Medicine; EFIM, European Federation of Internal Medicine.

The seemingly universal nature of ethical principles is underlined by their international scope. The Declaration of Geneva adopted in 1948 by the World Medical Association was an attempt to describe a world standard for medical professionals, and there is evidence that the professionals’ beneficial influence extended beyond the physician-patient relationship to help shape humanistic and egalitarian features of the world’s legal and political institutions.⁵ Indeed, the United Nations General Conference began devising universal standards in the field of bioethics that extended far beyond professional conduct by physicians. The 2005 Universal Draft Declaration on Bioethics and Human Rights outlines the ethical practices expected of policymakers, health care providers, and professional groups (Table 28-2).⁶

TABLE 28-2 Universal Draft Declaration on Bioethics and Human Rights^6,48

Moral Theory

For centuries, many physicians have grounded ethical behavioral in their religious beliefs, whether invoking the gods of Hippocrates’s Greece or the monotheism of today. Particularly in the United States, appeals to the Ten Commandments or especially the “golden rule”—“Do unto others as you would have them do unto you”—are especially common approaches to proscribing behavior. Other physicians and scholars have turned to secular theories of moral behavior. John Stuart Mill’s and Jeremy Bentham’s utilitarianism, commonly understood as the “greatest good for the greatest number,” is one system that focuses on the consequences of given actions as the tool for making the best choice. Immanuel Kant held that moral behavior would follow from meeting the rational requirement to choose the course of action that a person would want everyone in a similar position to follow, as if that person were setting the rules for behavior. In the 1970s, largely in response to reports of abuse of research subjects in the Tuskegee syphilis experiments, the U.S. federal government commissioned a group of scholars to provide a guide for the proper conduct of research, and the resulting Belmont Report focused on the principles of autonomy, beneficence, and justice. Further developed by Beauchamp and Childress, “principlism” has been widely applied to clinical ethics as well.⁷

Gert argued that these traditional systems of moral theory are generally not useful in resolving clinical and other ethics debates.⁸ Each of these systems has noteworthy exceptions, and any system that sometimes produces the wrong answer cannot be relied upon to produce the right answer when faced with an ethical dilemma. Furthermore, Gert argued, moral theories that suggest that there is one right answer can actually impede resolution of ethical dilemmas by creating conflict among participants. Instead, according to Gert, most dilemmas can be resolved if there can be agreement on the facts, and in cases of true conflict on values, such as abortion, there can be more than one morally acceptable answer. He offered his own approach of moral rules and ideals and suggested that breaking the rules is appropriate when a person would be willing to describe publicly why he or she is breaking a rule and have it stand as policy. For example, breaking a promise of confidentiality is appropriate when a clinician learns that a patient plans to injure somebody.

Autonomy, Beneficence, and Justice

Despite the limits of principlism for resolving ethical dilemmas, it provides a useful framework for understanding clinical ethics.⁹

There are three basic elements to autonomy: agency (awareness of oneself, desires, and intentions), independence (absence of influences), and rationality (capacity for reflection on desires). Respect for a patient’s autonomy is the fundamental principle underlying privacy, confidentiality, valid consent, and refusal of treatment. In the United States, the right to privacy was first recognized as protected by the Constitution in the 1965 U.S. Supreme Court ruling, Griswold v. Connecticut,^9a a case involving use of contraception by married couples. In clinical practice, autonomy has come to mean that patients generally decide what medical care they receive, and their wish to refuse treatment should be respected if they are fully informed and appreciate the consequences of their refusal. Because of age and cognitive level, children are typically not deemed competent to make medical decisions. Parents or guardians are usually called upon to do what is in the best interests of the child. As children enter their teens, they begin to participate in health care decisions, especially when the issues involve pregnancy or treatment for sexually transmitted infections.

When the health care team believes that a family’s wishes are not in the best interest of the child, they have an obligation to argue that a “reasonable person” would choose otherwise. When such conflicts cannot be resolved, even with help from social workers and pastoral care providers, the health care team can appeal to a state government to protect the interests of the child. The state typically intervenes on behalf of the child through the court system, for example, when parents refuse obviously lifesaving treatment on religious grounds. Most hospitals have bioethics committees that can help clarify ethical dilemmas and provide leadership in articulating a consensus on community values.

The twin principles of nonmaleficence and beneficence also focus on the individual patient’s best interest. Nonmaleficence, the duty to do no harm to patients, is deeply rooted in the history of medicine. However, it is not enough to merely restrain from harmful acts; the physician must take active steps to contribute to the welfare of the patient. Deciding whether aggressive intervention at the end of life would produce more harm than benefit for a patient is a classic example of how the principle of beneficence may be applied. Constructing a risk : benefit ratio can operationalize the principle of beneficence: a favorable benefit : harm ratio is the prerequisite for any action to be ethically justified.

In attempting to follow the principles of autonomy and beneficence, the health care provider will confront inequities in the social and economic fabric of society. The philosopher John Rawls offered one way to describe such inequities: The “natural lottery” distributes properties through birth, and the “social lottery” distributes social assets through family property, social class, and education. The principle of justice holds that people do not deserve advantageous properties any more than they deserve disadvantageous properties.⁷ In the United States, however, children living in poverty and those without health insurance are much more likely to experience poor heath than are those who are wealthier and those with health insurance. A just distribution of resources implies that all children, indeed all persons, should have equal access to medical treatment and adequate education, housing, and nutrition. Children with special health care needs are especially likely to suffer from inadequate access to beneficial medical care, and their families face substantial economic hardship.

Principlism, Historical Context, and the Role of the Bioethics Committee

Despite the popularity of principlism as a framework for clinical ethics, there is empirical evidence that education in such principles of ethics does not affect moral decision making as much as do culture, personal history, and social and institutional context.¹⁰ Indeed, it is sometimes difficult in practice to balance all the principles equally and simultaneously, inasmuch as an emphasis on one principle often minimizes that on another. For example, in an effort to minimize harm to a patient with an aggressive medical intervention, the physician might indirectly diminish the patient’s autonomy. Beneficence and autonomy often conflict with the principle of social justice, in the presence of finite resources in health care. An individual physician may advocate for a third liver transplantation for her patient, for example, but in the context of a long waiting list, social justice suggests that other patients should have an opportunity to benefit from that limited resource. Which principle takes precedence? Who is to decide which principle is most important in a given case?

The answers to these questions vary with time and place. Each society works out an approximate consensus for most ethical issues, and this consensus may shift over time. For example, during the 1950s in the United States, there was a general consensus that beneficence trumped autonomy: the physician knew best what to do at the end of life, and it was appropriate to withhold information from patients and families. Through the 1960s and 1970s, such “paternalism” came under attack as part of a larger movement questioning the beneficence of institutional authority, and today autonomy typically outweighs beneficence (see Chapter 8B).¹¹ This shift towards patient autonomy is embodied in the case of Nancy Cruzan^* in 1990, when the U.S. Supreme Court recognized the right of competent persons to decline medical treatment even if it led to the person’s death. Living wills and advanced directives now instruct the health care team to respect the wishes of the patient at the end of life.

One way of defining the social consensus on controversial ethical issues is through institutional bioethics committees. Since the 1970s, such committees have been increasingly active in the United States and elsewhere, in part to fulfill the requirement by the Joint Commission on Accreditation of Healthcare Organizations that hospitals have a mechanism for addressing ethical issues in patient care. One key role of an institutional bioethics committee is to define current standards of ethical practice: that is, to help the entire community understand what the social consensus is with regard to typical issues such as confidentiality and end-of-life decisions. The membership of a bioethics committee is therefore crucial for its success: Some members should be well trained in the philosophical principles of bioethics, some should be legal experts, some should have experience with pastoral care, some should have clinical experience with common ethical issues, and some, arguably, should have a personal experience of living with a disability.¹² Overall diversity of membership is crucial, however, because the committee needs to be able to say that its deliberations reflect the broad consensus of a community. In this case, diversity refers to gender, age, disability, race/ethnicity, professional background, political viewpoints, and association with the hospital. The presence of at least one committee person with a developmental disability helps ensure that special issues related to persons with disabilities are appropriately considered. Table 28-3 describes the properties of an institutional ethics committee according to the United Nations Educational, Scientific, and Cultural Organization (UNESCO), the American Medical Association, and the American Academy of Pediatrics.

TABLE 28-3 Guidelines for Institutional Ethics Committees (IECs)

From Antiquity to the Enlightenment

Persons with disabilities have suffered from discrimination and abuse since antiquity, although such treatment was not universal. In ancient Greece and Rome, for example, most scholars attributed disabling condition to failure of parents to properly revere the gods. Hippocrates’ hypothesis that epilepsy was a disturbance of the natural processes in the mind was a rare example of seeking material causes of disease. In their everyday lives, many persons with disabilities served as scapegoats for minor or major problems, and they typically pursued the only work available: as singers, dancers, musicians, jugglers, or clowns. Blind people were occasionally revered as poets and bards, but that was an exception to typical beliefs about the cognitive abilities of persons with disabilities. Deaf people, according to Aristotle, were incapable of learning. However, Aristotle also echoed Socrates in his admonition to “pity the weak,” and thus the city of Athens provided some support to individuals with disabilities. In the warlike state of Sparta, in contrast, “deformed” and sickly infants were sometimes abandoned, because their continued existence threatened the strength of the state.

Christian religious authority and superstition reigned in the Middle Ages. Parents were still blamed for a child’s disabilities, for example, but in the new religious context, explanations for disability were more likely to be found in the sins of the parents. St. Augustine, although generally progressive in his approach to persons with disabilities, also argued that disabilities represented proof of God’s power over the natural world and that because the deaf could not hear the gospels, they were to be excluded from church activities. Other church officials sought to help people with mental illness by tying them up in the church in the belief that they could be improved by attending mass. In other parts of Europe, the teachings of Jesus set a new example of pity and sympathy toward the physically and mentally disabled. Some religious cloisters provided places of refuge, and persons with physical disabilities commonly traveled to pilgrimage sites such as Rome and Jerusalem in search of salvation.

During the Middle Ages, civil authority was deeply intertwined with the Christian religious hierarchy throughout Europe, which affected the civil rights of persons with disabilities. In early modern England, “poor laws” provided some material support to individuals unable to work because of a disability. In other places, however, the negative view of persons with disabilities meant that they were not allowed to inherit property; testify in court; or make a deed, contract, or will. Even worse, in 1484 Pope Innocent VIII proclaimed a war against witches, and during the next 300 years, there were more than 100,000 witch trials throughout Europe. People with disabilities were frequently accused of demonic possession, and tens of thousands were tortured, hanged, or burned at the stake.

Whereas Christian and lay authorities provided widely varying views on disability, Jewish teachers more consistently emphasized that all human life is to be considered a gift and that no form of life, even a disabled one, constitutes divine punishment. Thus, the principle of the sanctity of human life guided much of the treatment toward disabled children through Judaic history. For example, the revered 11th century Talmudic scholar Rashi wrote that no child should be abandoned to die but, rather, even children born with overwhelming abnormalities should be nursed by their mothers.

Similar to the teaching of prominent Jewish scholars, the Islamic tradition typically highlighted the sacredness of all human life.⁹ Although the study of disability in the medieval Islamic world is only in its infancy, preliminary evidence suggests that Islamic society generally did not associate disabilities with moral or spiritual deficiencies.¹⁴ However, the legal rights of persons considered to be incompetent were considerably curtailed, and they were typically entrusted to a legal guardian’s care. Medical treatment for this population varied, including incantations, magic, exorcisms, and a physiological approach adopted from Galen: Like the famous physician, Islamic practitioners hoped to heal cognitive or physical disabilities by restoring the balance of humors.

From the Renaissance through the Enlightenment, religious authority was increasingly separated from civil authority, and governments slowly moved from monarchist to republican models with power invested in representative governments. Enlightenment philosophers argued for the rights of the individual, and through the 19th century, children in particular took on new cultural value as individuals, rather than mere small adults who were the property of their father. From Paris hospitals through German laboratories, the scientific model was applied to medicine, and the search for rational explanations to disease and medicine was reinvigorated.

Persons with disabilities benefited from these broader changes in society. Among richer families, for example, deaf first-born sons were taught to read and write in order to fulfill legal inheritance requirements. In Germany and France in particular, individuals with disabilities began to take part in community activities, and the discipline of physical therapy emerged to treat persons with physical disabilities. The most dramatic development was that governments in Europe and the United States built large hospitals to treat mental retardation in the early 1800s. Founders of these institutions believed that special training programs and the appropriate environment could cure mental retardation. Optimism waned in the late 1800s, however, because discharges were rare and doctors began to recognize mental retardation as a chronic problem. Underfunded and overwhelmed, these institutions became custodial care centers, and reports of horrific conditions recurred throughout the 20th century.¹⁵

Twentieth Century and Eugenics