Alexander Tartaglia, MA, MDiv, DMin, BCC, ACPE Supervisor, Ken Faulkner, MA, MDiv, and Karen A. Kane, MSN, RN, CPAN
The concern for ethical practice in the care of patients has a long tradition. Since the times of Hammurabi and Hippocrates, clinicians have identified the need to develop superior technical skills and an understanding of the application of those skills using sound moral judgment. This chapter assists the perianesthesia nurse in developing a framework for understanding ethical obligations to patients, surrogates, and colleagues. Offering a historical review of landmark cases that contribute to the development of bioethics as a distinct discipline, the chapter describes and outlines the common principles used in the analysis and resolution of ethical concerns.
The chapter proceeds to examine ethical concerns most commonly encountered by perianesthesia professionals, including patient safety, privacy, and informed consent with particular attention to do not resuscitate (DNR) orders in the perioperative context. It offers practical guidance to assist clinicians in seeking strategies toward the resolution of ethical dilemmas.
Definitions
Autonomy The right to determine what happens to one’s own body, choosing treatment options consistent with one’s values.
Confidentiality Personal promise and trust that information about a patient’s health and treatment will be used only for the patient’s benefit and with care team members on a “need to know” basis.
Ethics Formal analysis, study, and reflection on questions of moral behavior; systematic reflection on the “ought.”
Informed Consent Detailed process of communication between a patient and physician regarding authorization for a particular medical intervention, including clear understanding of its benefits, risks, and alternatives.
Privacy Patient’s right to control access and distribution of personal information regarding his or her health and treatment; respect for patient’s personal space to ensure dignified care.
Required Reconsideration Comprehensive conversation between providers and patient/surrogate regarding a patient’s DNR status during the administration of anesthesia.
Understanding Ethics
Understanding the nature of ethical reflection requires the establishment of a common language and definition of terms. What do we mean when we use the terms ethics and morality? What is the nature of a moral dilemma? What is the goal of ethical reflection? How can we know which rules, principles, standards, or guidelines are best for determining appropriate ethical behavior in the resolution of everyday dilemmas?
The terms ethics and morality, although related, remain distinct. Ethics is derived from the Greek root ethos, meaning “character.”1Morality or morals is derived from the Latin word mores or moralis, meaning “customs, character, or habit.”1 The ancient terms have a shared meaning. Today, persons engaged in the formal discipline of ethical reflection have a more distinct understanding. Beauchamp and Childress understand ethics as a “generic term for various ways of understanding and examining the moral life” and morality as “norms about right or wrong human conduct that are so widely shared that they form a stable (although usually incomplete) social consensus.”2 Morality informs persons in society as to what behavior or conduct may be considered good or right. Questions of morality include What is the right thing to do in this circumstance? How should I act in this situation?
Ethics is the formal analysis, study, and reflection on how individuals answer basic questions of moral behavior. As a method of reflection, ethics asks certain types of questions such as How do I determine what is good or bad? How do I justify my actions, and what reasons, rules, principles, standards, or guidelines should direct my decisions? Ethics is understood as a formal discipline engaged in the systematic assessment of the morals that exist in the lives of individuals and society. Ethics has a twofold task. One task is descriptive in nature, which means that ethics may simply describe in an orderly fashion the values or norms of good or bad behavior that are a part of the social context. The other task is normative, which means that ethics seeks to clarify, justify, and correct those values and norms as they apply in certain circumstances.
The goal of ethical reflection, particularly in health care, has the practical function of assisting individuals or groups in the resolution of moral dilemmas. A dilemma occurs when one is faced with a choice between two or more equally desirable but mutually exclusive options. A moral dilemma is present when a moral obligation exists on both sides of the choice—to either perform or refrain from performing an action—and ethical reasons can be found to support either of the alternatives.3 The essence of a moral dilemma is conflict. That is, a moral dilemma occurs when an individual or society experiences a conflict between competing values, duties, and obligations in a given situation.
A classic example of a moral dilemma in health care that continues to evade resolution in American society is abortion. Those who support reproductive choice argue on the basis of a woman’s right to decide what happens to her own body. Supporters of abortion rights give greater weight to the moral status of the mother, as an independent and autonomous agent, than to the developing fetus. Those who oppose abortion argue that the fetus is also a living human with its own independent moral status and, as a human life, deserves equal protection and the same right to a full life as the mother. The conflict is not so much between the mother and the fetus but rather the values and obligations owed to each party. Some value the autonomy of the mother more than the fetus. Others value the independent moral status of the developing fetus over the mother’s. One cannot equally honor both sets of values or obligations. Thus a moral dilemma exists along with a conflict about which obligation should prevail. This simplified version of the abortion debate illustrates the conflict of competing values inherent in any moral dilemma.
The Emergence of Bioethics
Ethical reflection can apply to any arena of life, but in the past few decades, a new term has come to signify ethical reflection in the health care field: bioethics, or more precisely biomedical ethics. Bioethics is the application of ethical study and reflection to the life sciences. More recently, the term clinical ethics has been used to define ethical reflection in the clinical context of the actual care of patients. Many of the ethical concerns that confront professionals in the perianesthesia context are, by nature, clinical ethics issues.
The emergence of bioethics as a field within health care responds to a series of emerging problems in the second half of the twentieth century. This period represents a time in American history of social fomentation related to developing individual and civil rights concerns, to the recognition that society has become increasingly pluralistic, and to the rapid development of technologic advances in medicine. Each of these concurrent historic forces led to novel moral challenges and the need for new ways to address the transformative dilemmas. For years, medical ethics remained under the purview of physicians who almost exclusively governed decision making for patients. Discussion or reflection on difficult moral problems encountered in the delivery of care or in medical research was kept private. After 1950, a number of noteworthy medical and legal cases emerged in the context of a rapidly changing society, which led to challenges to paternalism and gave rise to bioethics as a new interdisciplinary discipline. David Rothman describes this historic development as one in which physicians slowly became “strangers at the bedside” as other professions more frequently weighed in on the deliberations of medical decision making and recurring ethical dilemmas.4
Isolation occurred in part because paternalistic ways of governing health care by physicians began to break down in the face of increasing social challenges. Physicians no longer maintained sole discretion in addressing problems and shaping policy. Individuals from the fields of philosophy, religion, law, journalism, nursing, and the social sciences began to pay attention to issues in health care and began to organize to address their concerns. A more informed citizenry began to demand a more active voice in decision making and oversight in the delivery of medical care.
Paradigmatic Cases
The development of bioethics has been fueled by noteworthy medical and legal cases. These cases are significant for leading to profound changes in the way similar and future medical cases would be viewed. They reshaped health policy and law and reformed ethical practices in the way other patients in similar circumstances would be treated. The cases led to a different way of perceiving and valuing the moral obligations owed to patients by physicians, researchers, and other health care professionals.
Research With Human Subjects
Among the most sweeping reform in the second half of the twentieth century was in the arena of medical research with human subjects. For much of medicine’s history, the improvement of care for patients has been through the trial-and-error method of experimentation. Few therapies, when initially applied, had any guarantee of success, and some were fraught with the risk of further injury or debilitation to the patient. Early medical researchers were practicing physicians whose small-scale experiments were conducted solely for therapeutic benefit. The goal of experimentation was undertaken not as much to benefit future patients as to heal the very individual under the immediate care of the practicing physician.5 Most research was, at least in its intent, benevolent and humanistic, with the Hippocratic ideal of “doing no harm” providing the guiding norm of the experimenter’s conduct. Nonetheless, two key events revealed how flagrantly this norm can be ignored when the focus shifts to utilitarian goals rather than the safety and welfare of humans.
Nazi Germany, forever remembered for war crimes committed against the human race, was instrumental in perpetrating mass exterminations of innocent members of “undesirable” ethnic groups and other minorities. The techniques for these exterminations were perfected by Nazi physicians whose gruesome acts were later publicly revealed in the Nuremberg trials and documented by American observer Dr. Leo Alexander.6 The trials revealed how physicians and administrators conspired to engage in medical experiments such as forced sterilizations, poisonings, the infliction of simulated combat injuries, exposure to infections and extreme weather conditions, and ultimately the refinement of euthanasia techniques on those deemed mentally or physically “defective.” There were approximately 275,000 victims over a 10-year span of time. After these staggering revelations, an international tribunal of judges developed what is known as the Nuremberg Code, a statement of 10 principles that govern the ethical conduct of medical experimentation with human subjects. At the heart of the code is that the “voluntary consent of the human subject is absolutely essential” and that freedom from coercion, force, duress, or deception is a condition of participation in any form of experimentation. Expanding the moral framework for the conduct of medical research in the Nuremberg Code, the World Medical Association adopted the Helsinki Declaration in 1964.
Unfortunately, the efforts of Nuremberg and Helsinki did not end the problems with human research. Within the United States, these important principles did not filter into the consciousness or conduct of physician experimenters, which became all too apparent in the infamous research project known as the Tuskegee Syphilis Study. From 1932 to 1972, the U.S. Public Health Service (USPHS), later known as the Centers for Disease Control and Prevention (CDC), engaged in a research study that involved 400 African American men in Macon County, Alabama. What began as a small time-limited project to improve the treatment of syphilis among poor minorities expanded into a full-blown plan marked by deception and discrimination that yielded no new information about the disease and offered no bona fide treatment for subjects.7 Initiated with hopes of understanding the disease and finding the definitive cure, the study evolved into an observation of how the disease progressed through its various stages, culminating in death in many cases.
Participants in the study were led to believe they were being provided real treatment for what the physician researchers called bad blood, a euphemistic term for any kind of blood-related condition. Treatment amounted essentially to various placebos combined with painful nontherapeutic spinal taps. Subjects were induced to participate in the study through the offer of free treatment, meals, and transportation. Free burial insurance was promised on the condition the research subjects permit an autopsy upon their deaths for documentation of the effects of the end stages of the disease. Even when the curative antibiotic of penicillin became widely available, subjects of the study were prohibited from receiving it so researchers might continue to track the disease’s effects on the unsuspecting subjects’ bodies. The deception and coercion continued until USPHS investigator Peter Buxtun learned of the project from a colleague. Frustrated in his attempts to end the study by working within the USPHS, Buxtun turned to the press, and reporter Jean Heller broke the story in July 1972.8
The public and political outcry that followed the revelation of the study culminated in its immediate suspension and congressional passage of the Federal Research Act of 1974, which created two significant entities.9 First, the act established what is now known as the Office for Human Research Protections, which mandates that all institutions that receive federal funding for research with human subjects maintain institutional review boards with oversight for the safety and ethical treatment of research subjects. Second, the act established the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The multiprofession commission was assigned to craft guidelines that would serve as a moral foundation for future human research regulation.5 By 1979, the commission had arrived at a policy statement known as the Belmont Report.10 The report highlighted three basic ethical principles that guide all medical research involving humans in the United States. The principle of respect for persons requires that participation in research be based on the voluntary informed consent of the subject of the study. The principle of beneficence calls for a comprehensive risk and benefit assessment that weighs the potential harm against the potential benefit to the current subjects or future patients. The principle of justice requires that research subjects be chosen equitably (unlike Tuskegee) and that a fundamental fairness in both benefits gained and risks incurred be shared by research participants. Justice also requires that the more vulnerable members of society, such as children, prisoners, pregnant women, and the mentally challenged, be given added protection in research.
Reforms and regulations that emerged from Tuskegee and the Belmont Report now ensure that essential elements are present in every medical or behavioral research study that involves persons. These elements are voluntary participation, informed consent, comprehension by the subject of the nature and purpose of the study, full disclosure of risks and benefits, disclosure of alternatives to participation in research (as in the case of treatment associated with clinical trials), and the option to withdraw from the study without penalty.
Subsequently, President Barack Obama authorized the Presidential Commission for the Study of Bioethical Issues to conduct a thorough review of domestic and international regulations on human subject research to determine whether current rules still provide adequate protection. This directive occurred after the new revelations of unethical research in Guatemala from 1946 to 1948 in the USPHS Sexually Transmitted Diseases Inoculation Study.11
End-of-life Cases
Controversial patient care cases involving end-of-life decisions hold a prominent place in the development of the bioethics movement. Three cases are particularly noteworthy; all involved young women, each of whom was severely incapacitated and unable to participate in decisions regarding life-sustaining therapy. The first landmark case is that of Karen Ann Quinlan.12 Karen was a 21-year-old woman in New Jersey who, in 1975, suffered a severe anoxic brain injury after an accidental overdose of alcohol and drugs. Karen never regained consciousness and remained dependent on a ventilator for breathing and a feeding tube for nutrition and hydration. Eventually, she was given the diagnosis of a persistent vegetative state (PVS), a neurologic condition characterized by a “complete unawareness of the self and the environment, accompanied by sleep-wake cycles with either complete or partial preservation of the hypothalamic and brainstem autonomic functions.”13 Patients with PVS display “eyes open” unconsciousness and may have gross involuntary movements but do not respond to external stimuli or engage in any purposeful activity. After some months, Karen’s parents came to the realization that their daughter would likely never regain the ability to have any meaningful interaction. Following what they believed would be her own wishes, they asked physicians to remove the ventilator and allow Karen to die a natural death. Karen’s physicians adamantly opposed this idea, believing this to be an act of euthanasia, or worse, murder. Karen’s parents petitioned the courts, and her case eventually came before the New Jersey Supreme Court. The Supreme Court ruled in the parents’ favor on the basis that Karen had a fundamental right to privacy including the right not to receive treatment against her will. The court wrote that “the State’s interest (to preserve life) weakens and the individual’s right to privacy grows as the degree of bodily invasion increases and the prognosis grows dim. Ultimately there comes a point at which the individual’s rights overcome the State’s interest.”12 Physicians slowly weaned Karen from the ventilator while continuing her tube feedings and hydration (Karen’s parents never asked for the removal of the tube). Remarkably, Karen lived an additional 10 years before she died in a nursing home in 1986.
A second landmark case is that of Nancy Cruzan, a case sometimes referred to as the first “right to die” case to go before the United States Supreme Court.14 In 1983, Nancy was a 24-year-old woman who lost control of her vehicle on an icy road late one night in Missouri. She was found lying face down in a ditch after being ejected from her car. Nancy had stopped breathing and had no detectable heartbeat for a brief period of time. Rescue personnel intervened to restore her respiratory and cardiac function. Like Karen Ann Quinlan, Nancy had an anoxic brain injury that led to the eventual diagnosis of a PVS. Nancy was eventually transferred from an acute care setting to a rehabilitation facility where, despite years of effort, no improvements were seen in her condition. Unlike Karen Ann, Nancy was not dependent on a ventilator but was similarly sustained with a gastrostomy tube for feeding and hydration. Four years after her injury, Nancy’s parents asked physicians to remove the feeding tube with the understanding that Nancy would die. They contended that Nancy had remarked about never wanting to be artificially sustained if she could not be “at least halfway normal.”14 Physicians resisted, leading Nancy’s parents to turn to the courts for help. The Supreme Court of Missouri ruled against them with the argument that sufficient evidence of Nancy’s true wishes did not exist to justify the withdrawal of life support, particularly in light of the consequence of death. Denial of the Cruzans’ wishes on Nancy’s behalf led to an appeal to the U.S. Supreme Court and set the stage for one of the most famous medical legal cases in U.S. history.
The U.S. Supreme Court received the case in December 1989 and issued a ruling in June 1990. In somewhat of a split decision, the Court, on constitutional grounds, affirmed both certain rights and requirements for all parties in determining a course of action in cases like Cruzan’s. The Court acknowledged an individual’s right to refuse treatment, even such treatment as life-sustaining tube feeding and hydration. Yet the Court went on to say that the state of Missouri could require “clear and convincing evidence” that such refusal was made when that person was still competent. On these grounds, the Cruzan case was remanded to Missouri for further adjudication. The emergence of new evidence indicated that Nancy would not have wanted life-sustaining treatment in her current condition and led to a Missouri lower court permitting the withdrawal of the feeding tube. Nancy died in December 1990.
The Cruzan case and the memory of the Quinlan case before it propelled the creation of federal legislation designed for individuals to state their desire to refuse life-sustaining treatment under the conditions set forth by the Supreme Court even without capacity and the ability to communicate. The Patient Self-Determination Act of 1990 established on a national level the legitimacy of previously written advance directives as valid legal expressions of an individual’s desire to limit or refuse treatment in end-of-life circumstances.15 These advance directives, often referred to as living wills (and in many states includes durable power of attorney for health care decisions), in theory meet the “clear and convincing” evidence standard required by the U.S. Supreme Court. While all 50 states recognize and honor some form of written advance directives, problems persist in these difficult cases in both the interpretation of generalized written statements and the infrequency of their use among the public.16,17 Another attempt to assist patients, families, and clinicians in understanding a patient’s wishes for end-of-life care is found in the growing influence of the Physician Orders for Life-Sustaining Treatments (POLST) paradigm.18 POLST documents, intended for those with life-limiting or terminal disease processes, provide more specific guidance than generalized advance directives. POLST creates a specific set of medical orders by a physician based upon the expressed wishes and values of a patient. POLST is not a complete substitute for an advance directive. Rather, it builds upon and complements the wishes of the patient as expressed in an advance directive.
The case of Terri Schiavo is one of the more recent tragic end-of-life cases complicated by the absence of clear communication and understanding among family members over end-of-life wishes.19,20 Terri was a 26-year-old woman in 1990 when she had a cardiac arrest most likely as a result of an electrolyte imbalance from an ongoing eating disorder. Like Quinlan and Cruzan before her, she had a severe anoxic injury that rendered her a total care patient in a PVS for 15 years dependent on a percutaneous endoscopic gastrostomy tube for nutrition and hydration. Early on in her care, Terri’s husband, Michael, and her parents, Bob and Mary Schindler, were united in efforts to keep Terri alive and restore her to some level of conscious functioning. Within a few years, Michael came to the conclusion that Terri would not recover and sought to remove the feeding tube, allowing Terri to die. The Schindlers, deeply religious, vehemently opposed this request. They believed that removal of the tube was an act of murder and that continued aggressive effort could restore Terri to wakefulness. The Schindlers also questioned the diagnosis of PVS; they believed that Terri both recognized and communicated with them in her own limited way.
Fundamental disagreement between Michael and the Schindlers over Terri’s fate led to a bitter and international public dispute waged in the courts for more than a decade. The Schindlers petitioned to have Michael removed as Terri’s guardian and garnered the support of the Florida state legislature and Governor Jeb Bush, who signed a one-time stay forbidding the removal of the feeding tube pending further legal appeal. On three separate instances, the U.S. Supreme Court refused to hear the case, each time affirming the appropriateness of lower court findings in favor of Michael Schiavo. In the end, Michael’s position as Terri’s guardian was upheld, and the courts allowed the removal of the gastrostomy tube. Terri died on March 31, 2005, with her husband at her side. After her death, Michael permitted, at the request of the Schindlers, a neuropathologic autopsy that revealed severe atrophy of the brain. The official cause of death by the medical examiner was listed as “complications from anoxic encephalopathy.”21
The cases of Quinlan, Cruzan, and Schiavo reveal the ongoing struggle clinicians and families face in making decisions on behalf of patients with incapacitated conditions. The legacy of these cases highlights the continuing difficulties in withdrawing or withholding treatment in the care of patients with life-threatening conditions and little or no hope of recovery. A lack of public consensus has limited the development of social and institutional policy to guide clinicians. Even the closest of kin can sometimes be unclear about what their loved ones would desire in critical cases.22
Proponents of the principle of autonomy drive yet another option for end-of-life decision making, physician-assisted death (PAD) or physician-assisted suicide (PAS). Oregon was the first state to legalize this option through its Death with Dignity Act passed in 1997. The Death with Dignity Act “allows terminally ill Oregonians to end their lives through the voluntary self-administration of lethal medications, expressly prescribed by a physician for that purpose.”23 Since then, five other states have legalized PAD (Washington, Vermont, and California by legislation; Montana and New Mexico by court ruling), the most recent being California, whose law closely resembles Oregon’s. The passage of the California statute was significantly influenced by the case of Brittany Manyard, a young California woman diagnosed with terminal brain cancer who moved to Oregon to have the option for PAD that was not available in her home state.24 She died at the age of 29 years with her husband and mother by her side after ingesting a lethal medication provided to her by an Oregon physician. Her personal public appeal spurred California legislators and Governor Jerry Brown to enact the law.25
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