Principles
Ethics deals with a code of conduct based on established moral principles. When applied to a particular professional field, abstract theories as well as concrete principles are considered. Often the consequences of a particular course of action dictate its rightness or wrongness. Bioethics
is the study of ethics by professionals in the fields of medicine, law, philosophy, or theology. Some also refer to this area as applied ethics. The term bioethics is often used interchangeably with medical ethics, but purists would define medical ethics as the study of conduct by professionals in the field of medicine. Codes of ethics promulgated by professional groups or associations define obligations governing members of a given profession.
Initial questions concerning medical ethics involve purpose, to whom a duty is owed (legal or moral), and how far that duty extends. Does it extend solely to patients, to their families, or to society as a whole? For example, public health obligations to society involve a duty to prevent disease, maintain the health of the populace, and oversee the delivery of health care.
In his 1972 article “Models for Ethical Practice in a Revolutionary Age,” Robert M. Veatch proposes four models for ethical medicine. The first is the engineering model, in which the physician becomes an applied scientist interested in treating disease rather than caring for a patient. The Nazi physicians during World War II acting as so-called scientists and technicians are examples of the engineering model taken to its extreme. The second is the priestly model, in which the physician assumes a paternalistic role of moral dominance, treating the patient as a child. The main principle of this model is the traditional one of primum non nocere, or “first, do no harm.” It neglects principles of patient autonomy, dignity, and freedom. The third is the collegial model, in which physician and patient are colleagues cooperating in the pursuit of a common goal, such as preserving health, curing illness, or easing pain. This model requires mutual trust and confidence, demanding a continued dialogue between the parties. The fourth is the contractual model, in which the relationship between health-care provider and patient is analogous to a legal contract, with rights and obligations on both sides. The contractual model can be modified to provide for shared decision making and cooperation between physician and patient and tailored to the particular physician-patient relationship involved, resulting in a collegial association.
Autonomy and informed consent. Since the Nuremberg trials, which presented horrible accounts of medical experimentation in Nazi concentration camps, the issue of consent has been one of primary importance. These basic concepts recognize an individual’s uniqueness and inherent right to make decisions without coercion or undue influence from others. Respect for privacy and freedom is fundamental to human dignity. Even when people present difficult problems, such as being unconscious or in a coma, they must continue to be respected. Rational decision making by patients or their surrogates must be followed, and those with specialized knowledge or expertise are not authorized to impose their will on another person or limit that person’s freedom.
Informed consent seeks to encourage open communication between patient and health-care provider, protect patients and research subjects from harm, and encourage health-care providers to act responsibly vis-à-vis patients and subjects, ultimately preserving autonomy and rational decision making. Especially applicable in invasive procedures, such as those involving surgery or treatments with serious risks, informed consent requires the presence of certain conditions, including a patient’s competency or decision-making capability, in order to understand the relative consequences of a proposed course of treatment and its effect on a patient’s life and health. The health-care provider must inform patients of alternative courses of action, if any, and of the fact that patients have the option to refuse treatment, even if that alternative is contrary to the recommendation of the physician. The information conveyed to the patient must include the diagnosis, the nature of the proposed treatment, the known risks and consequences (excluding those that are too remote or improbable to bear significantly on the ultimate decision whether to proceed on a course of treatment, as well as those that are so well known that they are obvious to everyone), the benefits of the proposed treatment, any alternatives, the prognosis without treatment, economic cost, and how the treatment plan will impact the patient’s lifestyle. The patient should also be made aware that once given, an informed consent can be withdrawn. Hospital consent forms do not provide this type of information.
The information conveyed must be material and important to this patient, not a fictional reasonable and prudent person. Information is material if it could change the decision of that patient. Inherent problems include speculation as to what factors would have a dramatic impact on the patient’s life, requiring a dialogue between patient and health-care provider. It is also important to recognize the role of the physician’s time constraints and the patient’s overall stress level while the information is being conveyed, including possible information overload. Not only must the information be conveyed adequately, but it must also be assimilated and understood. The ability of an individual to process information raises substantial issues about understanding. Comprehension is not always easily ascertainable. Sometimes a person’s ability to make decisions is affected by problems of nonacceptance of information, even if it was comprehended. A patient may voluntarily waive informed consent and ask not to be informed, thereby relieving the physician of the obligation to obtain informed consent and ultimately delegating decision-making authority to the physician.
Medical emergencies constitute exceptions to the informed-consent requirement, provided that four conditions are met: the patient, whose wishes are unknown because no advance directive or living will exists, is incapable of giving consent because of the emergency; no surrogate is available; the medical condition poses a danger to the patient’s life or seriously impairs the patient’s health; and immediate treatment is required to avert the danger to life or health. This exception is justified on the grounds that consent can be assumed in cases in which a reasonable person would consent if informed. If the patient is not in imminent danger, or if consent can be obtained at a later time, the emergency exception does not apply. Another exception is the therapeutic privilege, in which health-care providers are justified in legitimately withholding information from a patient when they reasonably believe that disclosure will have an adverse effect on the patient’s condition or health, as in the case of a depressed, emotionally drained, or unstable patient. Again, the decision is subjective, referring to a specific patient, decided on a case-by-case basis. The privilege does not apply if the health-care provider withholds information based on the belief that the patient will refuse consent if told all the facts. In that instance, withholding information amounts to misrepresentation or deception.
Another ethical dilemma involving intentional deception or incomplete disclosure concerns the therapeutic use of placebos. One defense is that deception is moral when it is used for the patient’s welfare.
Paternalism. From the Latin word pater, meaning “father,” paternalism refers to controlling others as a father acts in his relationship with his children. In medical ethics, paternalism involves overriding the patient's wishes in order to act to benefit or avert harm to the patient. Intervention by a health-care provider to prevent competent patients from harming themselves is called strong paternalism. Strong paternalism is generally rejected by ethicists because of the view that health-care providers do not know all the factors influencing the life of another person and therefore lack the ability to decide what is best for another person. Weak paternalism is when the health-care provider overrules the wishes of an incompetent or questionably competent patient. It is sometimes justified in nonemergencies without informed consent to relieve serious pain and suffering. Another example of weak paternalism is the temporary use of restraints, justified on the grounds that confused and disoriented patients are otherwise likely to injure themselves. When restraints are necessary, the patient's surrogate is generally asked to give consent, a recognition that restraints, albeit temporary, constitute a limitation of one’s liberty.
Beneficence and nonmaleficence. The principles of beneficence (doing good) and nonmaleficence (avoiding evil) are both expressed in the Hippocratic oath: “I will use treatment to help the sick according to my ability and judgment, but I will never use it to injure or wrong them.” Each principle has a bearing on the other, and each is limited by the other. The obligation to do good is limited by the obligation to avoid evil. One may perform an act that risks evil if the following conditions are present (the principle of double effects): the action is good or morally indifferent, the agent intends a good effect, the evil effect is not the means to achieving good, and proportionality exists between good and evil. The principle of proportionality states that provided an action does not go directly against the dignity of the individual, there must be a proportionate good to justify risking evil consequences. Factors to be considered include the possible existence of an alternative means with less evil or no evil, the level of good intended compared to the level of evil risked, and the certitude or probability of good or evil. The second of these factors is related to what is called the wedge principle, referring to the fact that putting the tip of a wedge into a crack in a log and striking the wedge will split the log and destroy it; by analogy, once an exception is made in a single case, it will inevitably be made again on a larger scale, and the person making the exception must consider the effect it would have if made on that scale. The last element to be considered is the causal influence of the agent, recognizing that most effects result from many causes and that a particular agent is seldom the sole cause. For example, as noted by Thomas M. Garrett and colleagues in Health Care Ethics: Principles and Problems (5th ed., 2010), lung cancer can be triggered not only by smoking but also by conditions in the workplace, the environment, and heredity.
Obligations imposed on the patient demand the use of ordinary but not extraordinary means of preserving and restoring health. In other words, the patient should use means that produce more good than harm and evaluate the effects on the self, family, and society, including pain, cost, and benefits to one's health and quality of life. The health-care provider’s obligation demands that the benefits outweigh the burdens on the patient. An overarching obligation to society exists to provide health-care information and leadership to ensure the equitable distribution of scarce medical resources in a way that will allow the goals of health care to be achieved. Finally, the surrogate’s obligation depends on whether the wishes of the once-competent patient are known or can be ascertained. If so, the surrogate should decide accordingly (the substituted judgment principle). Overruling the person’s wishes would constitute a denial of the patient’s autonomy. If the person has never been competent or has never expressed his or her wishes, the surrogate should act in the best interests of the patient alone, disregarding the interests of family, society, and the surrogate. Another approach requires the surrogate to choose what the patient would have chosen if and when competent after having considered all relevant information and the interests of others.
Certain conditions justify the decision to withhold treatment, such as when treatment would be pointless or futile, especially with regard to the dead or those who are dying, and situations in which the burdens of treatment would outweigh the benefits. It should be noted that no bright line exists here because these cases are not decided easily. Neither ethicists nor those in the medical professions who debate these issues have reached a clear-cut solution that applies in every case.
Justice. Also called distributive justice, justice establishes principles for the distribution of scarce resources in circumstances where demand outstrips supply and rationing must occur. Needs are to be considered in terms of overall needs and the dignity of members of society. Aside from the biological and physiological elements, the social context of health and disease may influence a given problem and its severity. Individual prejudices and presuppositions may enlarge the nature and scope of the disease, creating a demand for health care that makes it even more difficult to distribute scarce resources to all members of society. Principles of fair distribution in society often supersede and become paramount to the concerns of the individual. Questions about who should receive what share of society’s scarce resources generate controversies about a national health policy, unequal distributions of advantages to the disadvantaged, and the rationing of health care.
Similar problems occur regarding access to and distribution of health insurance, medical equipment, and artificial organs. The lack of insurance and the problem of underinsurance constitute a huge economic barrier to health-care access in the United States. In Principles of Biomedical Ethics (7th ed., 2012), Tom L. Beauchamp and James F. Childress point out that the acquired immunodeficiency syndrome (AIDS) crisis has presented dramatic instances of the problems of insurability and underwriting practices, in which insurers often appeal to actuarial fairness in defending their decisions while neglecting social justice. Proposals to alleviate the unfairness to those below the poverty line have been based on charity, compassion, and benevolence toward the sick rather than on claims of justice. The ongoing debate in the United States over the entitlement to a minimum of health care involves not only government entitlement programs but also complex social, political, economic, and cultural beliefs.
Decisions concerning the allocation of funds will dictate the type of health care that can be provided and for which problems. Numerous resources, supplies, and spaces in intensive care units (ICUs) have been allocated for specific patients or classes of patients. A life-threatening illness complicates this decision. In the United States, health care has often been allocated based on a patient’s ability to pay rather than other criteria; rationing has at times been based on ranking a list of services or a patient’s age.
Confidentiality and privacy. In the United States, the medical profession has always strived to maintain the confidentiality of physician-patient communications, as well as the privacy of a patient’s medical records. While admirable, these values have not been absolute, and no uniformity exists among the fifty states regarding access to a patient’s medical records. In the past, as technology improved, with computers and fax machines transmitting health-care data to distant locations and medical records themselves existing in electronic form, no laws had been created to protect medical records adequately. In the late twentieth and early twenty-first centuries, the administrations of Bill Clinton, George W. Bush, and Barack Obama sought to enact legislation that would bridge the privacy gaps and create uniform standards while also eliminating discrimination in employment and insurance coverage based on one’s genetic predisposition. The Health Insurance Portability and Accountability Act (HIPAA) became law in 1996, with various aspects of the act going into effect in later years as circumstances allowed. Subsequently, when the Health Information Technology for Economic and Clinical Health (HITECH) Act was enacted in 2009, one section extended HIPAA's privacy and security provisions and requirements. One critical provision of the HITECH Act was the introduction of the important function of electronic health records (EHR); in fact, doctors and hospitals gain incentives for implementing the meaningful use of EHRs for Medicare and Medicaid patients.
Application of Ethical Principles
Advances in medical technology have expanded the scope of what medicine can accomplish. As medicine becomes increasingly sophisticated, medical ethics seeks to resolve age-old dilemmas as well as evaluate the use of new technologies. Certain ethical dilemmas have provoked sharp disagreement. Chief among these is the issue of death and dying, which brings into controversy two theories about the nature of health care. The “curing” approach is based on traditional medical ethical principles that date back to Hippocrates and include the principles of beneficence, nonmaleficence, and justice. The “caring” approach focuses on patient autonomy, proper bedside manner by health-care providers, the preparation of advance directives or living wills, and the hospice movement.
The curing approach to medical ethics equates medicine with healing. All ordinary measures must be taken to preserve life. This tradition holds that only God can decide the time of death, and even in the face of suffering, the health-care provider must not take measures to shorten life. Physicians are the primary decision makers, and they are in the best position to recommend and advise the patient and direct the treatment plan. The model is paternalistic.
In the caring approach, the health-care provider’s role is to minimize pain, present alternatives and the relative consequences of various options, and ultimately proceed according to the patient’s determination. This approach is subjective, as each case is decided individually. Quality of life, rather than sanctity of life, becomes the guiding principle.
Issues regarding futility of treatment arise, as well as the recognition that prolonging life does not always benefit patients. Physicians are not obligated to provide futile treatment, and in fact doing so may violate the physician’s duty not to harm patients, as such treatments are often burdensome and invasive, exacerbating the patient’s pain and discomfort. Patients cannot ethically compel health-care workers to provide treatment that violates the worker’s own personal beliefs or the standards of the profession. Other issues in this area deal with physician-assisted suicide and euthanasia and whether to provide or withhold lifesaving treatments.
The transplantation of vital organs—notably the heart, liver, and kidney—raises difficult ethical questions. As organ transplantation has become routine at many medical centers, its success has opened a Pandora’s box of ethical questions involving the allocation of scarce donor organs. One such question is whether the sickest person on the waiting list for an organ should be the recipient, or whether it should go to someone more robust who may live longer. Another is whether live donors should be compensated for donating an organ, just as blood donors are compensated. Many countries outside the United States and the United Kingdom condone the sale of organs; the 1984 National Organ Transplant Act makes selling organs illegal in the United States. Ethicists have debated animal-to-human organ transplants to alleviate the scarcity of human donor organs for transplantation.
Assisted reproduction in the form of in vitro fertilization (IVF), egg freezing, and sperm banking is largely an unregulated industry. Couples seeking help must make complex ethical decisions dealing with the preselection of embryos based on genetic traits through screening of a single cell. Other decisions deal with how many eggs should be fertilized and whether the remainder should be disposed of or frozen. The rights of the participants and the children created through assisted reproduction remain largely undefined. Several countries, including Sweden, Great Britain, and Australia, have banned anonymous sperm donation. The European Court of Human Rights has ruled that article 8 of the European Convention on Human Rights gives a child conceived from donor eggs or sperm the right to know the identity of his or her biological parents. In the United States, the issue is not addressed by federal statute, and laws vary widely from state to state on the matter.
The identification of human embryonic stem cells has been widely acknowledged as extremely valuable because it will assist scientists in understanding basic mechanisms of embryo development and gene regulation. It also holds the promise of allowing the development of techniques for manipulating, growing, and cloning stem cells to create designer cells and tissues. Stem cells are created in the first days of pregnancy. Scientists hope to direct stem cells to grow into replacement organs and tissues to treat a wide variety of diseases. Embryos are valued in research for their ability to produce stem cells, which can be harvested to grow a variety of tissues for use in transplantation to treat serious illnesses such as cancer, heart disease, and diabetes. In so doing, however, researchers must destroy days-old embryos, a procedure condemned by the Catholic Church, some antiabortion activists, and some women’s rights organizations. Other research points to similar promise using stem cells harvested from adults, so that no embryos are destroyed.
Perspective and Prospects
Medical ethics in Western culture has its roots in ancient Greek and Roman medicine, namely the Greek physician Hippocrates and the Roman physician Galen. In ancient Greece, as in most early societies, healing wounds and treating disease first appeared as folk practice and religious ritual. The earliest statement about ethics appears in a clinical and epidemiological book entitled Epidemics I, attributed to Hippocrates. It is in this work that the admonition “to help and not to harm” first appeared. The book itself deals with prognosis rather than treatment, which is the approach taken by Hippocrates. Galen asserts that any worthwhile doctor must know philosophy, including the logical, the physical, and the ethical, and be skilled at reasoning about the problems presented to him and understanding the nature and function of the body within the physical world.
Between the fourth and the fourteenth centuries CE, medicine became firmly established in the universities and the public life of the emerging nations of Europe. During this time, the Roman Catholic Church had a strong influence on Western civilization. Medicine was deeply touched by the doctrine and discipline of the church, and its theological influence shaped the ethics of medicine. The early church endorsed the use of human medicine and encouraged care of the sick as a work of charity. One of the greatest physicians during this period was the Jewish Talmudic scholar Maimonides, whose writings sometimes dealt with ethical questions in medicine.
The duty to comfort the sick and dying was a moral imperative in Christianity and Judaism. As the bubonic plague swept across Europe over the following several centuries, Protestant leader Martin Luther urged doctors and ministers to fulfill the obligation of Christian charity by faithful service, but John Calvin argued that physicians and ministers could depart if the preservation of their lives was in the common interest.
The ethical debates surrounding the plague moved medical ethics ahead. As noted by Albert R. Jonsen in A Short History of Medical Ethics (2000), the question became, “Under what circumstances does a person who has medical skills have a special obligation to serve the community?” When syphilis emerged in epidemic proportions at the end of the fifteenth century, a similar question regarding service to the sick at the cost of danger to oneself resurfaced, and members of the medical profession struggled with the link between medical necessity and moral correctness. Not until the nineteenth century did a consensus appear, mandating that the physician should take personal risks to serve the needy without appraising the morality of a patient’s behavior.
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