Chapter One - The History of Bioethics in the United States

Twenty-five years ago, few nurses had heard the word bioethics. Now nurses serve on ethics committees, articles about ethics appear in nursing publications, and the number of universities offering advanced degrees in ethics—and the number of nurses pursuing those degrees—continues to expand. How did bioethics come to be such an integral part of American health care?

The answer is that no single event created bioethics. Instead, a cascade of events brought the discipline into being and changed health care decision making. These events brought lawyers, legislators, theologians, and philosophers to the bedside to look over physicians’ shoulders and insist on guidelines, regulations, and collective decision making to enhance patient autonomy.¹ These same events thrust nurses into the role of patient advocate and brought to nursing a new emphasis on respect for patient autonomy and the promotion of patient’s rights in health care institutions.²

Medicine, nursing in the 1940s
Before World War II and into the early 1960s, medical decision making was the almost exclusive concern of the individual physician.¹ Physicians alone decided even such critical matters as withholding treatment without discussion with patients, their families, or colleagues. They alone decided whether to withhold a course of antibiotics and let pneumonia serve as “the old man's best friend” or to consider a newborn with grave birth defects a “stillbirth” and spare the parents the agony of choice and the burden of care.¹ This was the era of the country doctor, on-call 24 hours a day, staying at the bedside to the end.³ He knew his patients well, and they trusted him to decide what, and how much, to tell them about their illness.¹ Physicians of that era were accustomed to making their own rules and would have considered an external intervention such as consultation with a bioethics committee unnecessary, if not insulting.¹ Today, this “doctor-knows-best” attitude is known as “paternalism.”

Nursing of that era stressed following physicians’ orders. Hospital training schools taught obedience and “doing as you’re told.” As one physician reminded nurses, “The doctor is the coach of the team—and to a large extent the quarterback also⁴.”

The role of technology
Since the 1940s, scientific and technological advances have brought profound changes to American health care. The discoveries that enable us to save lives and extend life have also brought decisions. The advent of CPR in 1964 enables us to resuscitate those whose hearts have stopped, but decisions are required about its appropriate use on patients with terminal illness or dementia.⁵

As scientific advances have become more sophisticated, the decisions they require have become more complicated. The Scribner shunt, introduced in 1961, allowed patients with chronic, end-stage kidney failure to be connected to dialysis machines. But the shortage of dialysis machines prompted difficult decisions and showed the limitations of individual decision making.¹

World War II experiments—1941
The Second World War produced horrendous examples of research malpractice and the first international ethical code for research, as well as an intensification of scientific research.³ World War II saw the first widespread use of human participants in medical research.¹ To find solutions for the dysentery, influenza, malaria, and wounds that threatened soldiers at the front President Franklin Roosevelt created the Office of Scientific Research and Development.

Roosevelt’s Committee on Medical Research (CMR) coordinated researchers in universities, hospitals, research institutes, and industrial firms for the rapid improvement of military medicine.³ The CMR sponsored and supervised some some 600 research projects at 135 universities, hospitals, and companies costing $25 million over the course of the war. Much of that research, especially on infectious diseases, was done in prisons, mental hospitals, and military camps with little regard for the rights of the human participants in the research.³ The search for an antidote to dysentery is one example.

Research physicians, looking for an inoculation to the disease that threatened soldiers’ combat efficiency, first tested the dysentery bacteria on animals and then on orphans and the retarded in institutions. The boys and girls, ages 13 to 17, who were injected with the bacteria at the Ohio Soldiers and Sailors Orphanage developed severe systemic reactions and fevers of 105 degrees, ruling out the vaccine’s usefulness.¹

Other researchers infected psychotic patients at an Illinois State Hospital and prisoners at Joliet State Prison with malaria to test an antidote. They exposed conscientious objectors to frigid temperatures to test survival under hardship conditions.

Penicillin, which later saved thousands of soldiers from death from wound infections, was brought to the United States in 1941 by a British pathologist and tested on soldiers and prisoners to find the effective strength and dosage.¹

As a result of the research, enough penicillin was available in time to treat all the wounded in the Normandy invasion, and news stories heralded penicillin’s effectiveness as a miracle drug.¹ If the public was aware that incompetent and institutionalized subjects had been used for these experiments, they did not protest.¹ They no doubt considered that soldiers were sacrificing their lives on the battlefield, and everyone had to do their part. The war had created a utilitarian mind-set—that the few could be sacrificed for the good of the many, especially if it produced miracle drugs and cures for diseases.¹

Nuremberg Tribunal—1945
At the end of World War II, the Allies set up courts in Nuremberg, Germany, to try German, Italian, and Japanese leaders accused of crimes against humanity.³ In 1946, 42 Nazi physicians were indicted for war crimes when their role in the death camps and the human experiments was discovered.⁶ On Aug. 19, 1947, the Doctor’s Trial convicted 20 physicians and three medical administrators of “murders, tortures, and other atrocities committed in the name of medical science.” They were convicted of subjecting unwilling victims to medical procedures such as high-altitude research that deprived them of oxygen until they died and of slowly freezing others to death. In other experiments, the physicians infected more than a thousand people with malaria and treated them with experimental drugs, and infected others with typhus, cholera, smallpox, and diphtheria to develop vaccines.³ Nine of the Nazi doctors were sentenced to long prison terms, and seven were sentenced to death by hanging.³

The most notorious of the Nazi doctors, Joseph Mengele, escaped capture. He had done comparative studies on twins, such as transplanting organs, creating artificial Siamese twins, and infecting one child then killing both for autopsy.³ Although most Nazi doctors’ experiments were done to solve urgent German military medicine problems, the research of Mengele was inspired by racist and pseudoscientific eugenics.³

Revelations of Nazi doctors’ atrocities shocked the world, and a set of ethical standards of research emerged from the tribunal. The opening provision of the Nuremberg Code states: “The voluntary consent of the human subject is absolutely essential. This means that the person involved ... should be so situated as to be able to exercise free power of choice without the intervention of any element of force, fraud, deceit, duress, overreaching, or any other ulterior form of constraint or coercion.” The Nuremberg Code went on to say that “the experiment should be such as to yield fruitful results for the good of society³.”

If U.S. physicians involved in research found similarities between their use of institutionalized and incompetent subjects for wartime experiments and the Nazi physicians’ use of death camp prisoners and the developmentally disabled for experimentation, there was little mention of it.¹ A few articles in medical journals discussed the ethical issues of Nazi experimentation.³ For example, one written in 1949 by the American physician associated with the Nuremberg Tribunal detailed the gradual degradation of German medicine under the Nazi regime, beginning with the sterilization of the retarded and proceeding to the euthanasia of the chronically ill.³ U.S. researchers thought the Nuremberg Code had everything to do with the Nazis, and nothing to do with them.³ They drew the inference from Nuremberg that the state should not interfere with the conduct of research.

Post WW II era—1945-1966
Wartime had justified the utilitarian mind-set of using human subjects to conquer disease, and researchers had learned that the public would accept such decisions.¹ The public was thrilled by the almost miraculous scientific advancements that came out of WW II, including antibiotics, a cure for TB, and cardiac drugs.¹

Congress bestowed funds for experimentation on the National Institutes of Health (NIH).³ Its grant program funded clinical researchers in every medical school in the country; these university hospitals became major research centers, with thousands of patients as subjects for physicians’ scientific research.³ The funding came with no restrictions about the rights and welfare of the human participants.³ Between 1945 and 1966, the NIH funded 2,000 research projects, many involving experiments on humans subjects that were done without informing them about the consequences and without obtaining their consent.¹

In 1950, the American Nurses Association (ANA) House of Delegates adopted its first code of ethics. The “Code for the Professional Nurse” reflected the mood of the times when it spoke of “rendering health service to the individual,” but had little mention of the patient advocacy that later codes contained. It explained the nurses’ relationship to the physician in Code 7: “The nurse is obligated to carry out the physician’s orders intelligently … and to refuse to participate in unethical procedures,” and in Code 8: “The nurse sustains confidence in the physician and other members of the health team; incompetence or unethical conduct of associates in the health professions should be exposed, but only to the proper authority⁸.” It would take another 15 years before nurses would be required to use independent nursing judgment to advocate for patients’ well-being.

The cause of individual rights in the United States moved forward in 1954 when the Supreme Court ruled in Brown vs. Board of Education that school segregation was unconstitutional. The ruling’s underlying message of respect for the individual as a human being energized the civil rights movement. Advocates for other vulnerable groups, such as mental patients, women, children, and medical patients, began to speak out about protecting these groups as well.⁷ But it would take another 10 years before this emphasis would begin to bring changes that would protect the rights of patients in medical experiments.

An event that could have exposed the abuses of experimentation was the thalidomide scandal in 1962. Although thalidomide had been prescribed to pregnant women in Europe to prevent miscarriage, the head of the Food and Drug Administration, Dr. Frances Kelsey, was not satisfied with European test results.³ She delayed U.S. approval, despite pressure from the drug company and her superiors at the FDA.³ But 20,000 U.S. women, 624 of them pregnant, had already taken the drug in a pre-marketing campaign in the guise of a clinical investigation.³ Physicians conducting the pre-approval drug tests had not told the women that they were part of an experiment, nor explained the risks or obtained consent. In the meantime, the birth defects—babies born with missing limbs—became widely known, and Congress held hearings. The 1962 Leaver-Harris amendments to the Food, Drug and Cosmetic Act required for the first time that physicians at least inform subjects they were involved in a drug trial.³

Scribner shunt, Dialysis Selection Committees—1960
In 1960, Dr. Belding Scribner at the University of Washington Medical School in Seattle designed a permanent, indwelling shunt that allowed patients with chronic, end-stage kidney failure to be connected to a dialysis machine.¹ These machines could keep people alive, but they were in short supply. There were four times as many patients needing dialysis as there were machines. This forced choices. The Seattle physicians took the unprecedented step of asking the county medical society to appoint a lay committee to determine who would get dialysis.¹

The citizens—a lawyer, minister, housewife, government official, labor leader, and surgeon—were a “life or death committee with no moral or ethical guidelines save their own individual consciences.”9 The Seattle Artificial Kidney Center selection committee made its decisions about who would be treated based on “social worth criteria,” giving preference to heads of households and those who contributed to the community as church members or scout leaders.¹⁰

Journalist Shana Alexander sat in on the committee’s deliberations and wrote about the decision-making process for Life magazine. Her article, published in 1962, raised public furor. Many criticized the committee for unfairly choosing married over unmarried, employed over unemployed—in short, for playing God. As a result of the uproar, Congress underwrote funding for all patients with end-stage kidney disease, which provided enough dialysis machines for all. This was the first time that physicians had turned life and death matters over to a lay committee. By so doing, they had acknowledged the need for all segments of society to share the burden of choosing who would live and who would die.¹

Memorial vs. Darling—1965
Another event that altered the physicians’ role as “captain of the ship” in the 1960s was the Illinois Supreme Court decision in Memorial Hospital vs. Darling. After 14 days in a poorly prepared cast, 18-year-old Durance Darling’s broken leg became gangrenous and had to be amputated. The court found the nurses negligent along with the physicians for not reporting the condition of the leg cast, even if so doing meant reporting a physician’s negligence. This lawsuit emphasized the importance of independent nursing judgment and nursing advocacy for patient’s rights, even against the physician if necessary.¹

Henry Beecher’s article—1966
For 20 years after the close of WW II, human experimentation in medical research expanded, long after the utilitarian wartime justification had ceased.¹ But on June 16, 1966, an article appeared in the New England Journal of Medicine that sent shock waves through the research and medical communities.
The article, written by Harvard Medical School Professor of Anesthesiology Henry Beecher, MD, was titled “Ethics and Clinical Research.” Beecher was concerned that the enormous amount of funds available for research, combined with the pressures on physicians in medical schools to conduct research in order to be promoted, could lead to a “separation between the interests of science and the interests of the patient¹².”
His article detailed 22 examples of unethical experiments done between 1948 and 1965 on subjects without their understanding of the consequences and without their consent.¹² In Example 16, hepatitis virus was purposely fed to retarded children at an institution for mentally defective children, and in Example 17, live cancer cells were injected into 22 senile and demented hospitalized patients. Other researchers severely reduced the blood pressures of patients to study mental confusion (Example 8), performed thymectomies on children undergoing heart operations to study growth and development (Example 6), and sutured mercury-filled resistance gauges to the left ventricles of 30 adult patients with atrial fibrillation and mitral stenosis to study their heart output per beat (Example 10).¹²
Beecher’s examples were funded by the NIH, the U.S. military, foundations, and private drug companies and were carried out by leading university medical schools, including Harvard Medical School, Georgetown University, UCLA, Northwestern, and Duke. The physicians were research fellows in medicine and surgery, and two were professors; a number of them went on to become the chairs of departments and win prestigious awards.¹

Saul Krugman, MD, who had purposely infected mentally retarded children with hepatitis at Willowbrook State School for the Retarded (Example 16), in 1972 became the chair of the pediatrics department at New York University and won a prestigious prize for research in 1983. Krugman, as well as other researchers, were heirs to the wartime utilitarian mind-set of sacrificing the few for the greater good. The motivation behind his research was the conviction that he could do more good for more people if he found a cure for hepatitis.¹

The subjects of the research in Beecher’s examples were all marginalized members of society: the poor, the developmentally disabled, senile, and institutionalized; those who lacked the ability or opportunity to exercise choice.¹² Some of Beecher’s colleagues had a less than friendly response to his article, one denouncing him as a “dangerous exaggerator.”1 But stories in the New York Times and other newspapers about Beecher’s article aroused horror in the public.

The NIH, the most important source of funds for experimentation, was subordinate to Congress and had already begun to move to regulate human experimentation.¹ On July 1, 1966, the NIH created guidelines covering federally funded research on human experimentation. The guidelines mandated that institutions receiving funds create a committee of associates not connected to the project to review the judgment of the investigator and to keep documentation of informed consent. The groups, which came to be known as institutional review boards (IRBs), were charged with reviewing the potential risks and benefits of the research, and the methods used to obtain patient consent. The members of the IRBs were largely other research physicians, though a few included lawyers and clergy. Research was no longer at the discretion of individual investigators; for the first time, researchers had to answer to federal regulations and compulsory peer review.¹

Also in the wake of Beecher’s article, the FDA issued rules regarding consent in clinical drug trials. Its Statement on Policy Concerning Consent for the Use of Investigational New Drugs on Humans was released in August 1966.¹

Heart transplantation, redefining death—1968
In 1954, the first kidney was successfully transplanted from one identical twin to another, and between 1963 and 1964, 222 kidney transplants were performed. Only half the recipients were alive a year later, because problems of immune response had yet to be overcome.¹ Then in 1967, the first heart transplant was done by Dr. Christian Barnard in South Africa. The patient lived only 18 days, but the event sparked a media frenzy.¹ Other heart transplant teams sprang up in the United States, and suddenly many heart transplants were being done. By 1969, only 9 out of 100 patients who had received a heart were alive, raising concerns that too much was being attempted too soon.¹

Transplantation brought up a number of ethical issues: the scarcity of organs and the potential conflict of interest of transplant surgeons. But the most difficult ethical problem posed by transplantation was the need to redefine death.¹ Death at the time was defined as the total stoppage of the circulation of the blood.¹³ But kidneys, deprived of blood for even a short time, deteriorated. A heart viable for transplant needed to be removed and transplanted as close to the moment of death as possible.¹

Artificial respirators could keep unconscious patients’ hearts and lungs going indefinitely, and few hospitals had regulations about when to discontinue them.¹ Inside the ICU, physicians turned them off when they thought the patient’s condition was irreversible, but transplant surgeons were uncomfortable about being the ones to switch them off. They could be accused of not having the patient’s best interest in mind when they were thinking about the benefits of the heart for next the patient who needed it.¹

In 1968, under the direction of Henry Beecher, the Harvard Brain Death Committee undertook the task of redefining death. “A Definition of Irreversible Coma” defined death as two flat EEGs, 24 hours apart, from a patient not on barbiturates and not hypothermic, with no reflex activity, and with fixed and dilated pupils. The report recommended that the physician in charge consult with another colleague before declaring death, but expressed the opinion that it was unsound to force the family to make the decision.¹³

The report sparked criticism and opposition. Groups outside medicine were concerned about physicians unilaterally defining the moment of death.¹ Articles appeared in the popular press asking, When is death?14 Religious groups as well as philosophers wanted a say, and hospitals began to hold clergy-physician meetings on brain death.¹

Fueled by the controversy surrounding heart transplantation, Congress held hearings in 1968 to establish a commission to assess and report on the ethical, legal, social, and political implications of biomedical advances.¹ The senators thought that the dazzling scientific breakthroughs raised fundamental ethical and legal questions about who should live and who should die.^1,15 The surgeons who testified before the commission encouraged the government to increase funding for their research, but fought to maintain their authority over medical matters. They were opposed to a public, non-medical commission. When testimony turned to genetic research, and Dr. Arthur Kornberg, the 1959 Nobel Prize recipient for the biochemistry of DNA, testified that he saw no ethical or moral problem facing society with the new knowledge of genes.^1,15 But members of Congress felt that society as a whole had a stake in these scientific developments.
Baby Doe, neo-natal decision making—1969–1980s

In 1969, a newborn at Johns Hopkins Hospital with Down syndrome and intestinal blockage was allowed to die after the parents refused permission for surgery. A TV program about the incident created public furor. As a result, Johns Hopkins Hospital held forums to discuss neonatal decision making that were attended by sociologists and philosophers specializing in ethics.¹

In 1973, the controversy was further fueled by a journal article revealing that the deaths of a number of deformed newborns were due to physicians’ decisions to withhold treatment, without the knowledge of the parents.¹⁶ The new breed of bioethicists who had recently joined these discussions argued that parents should have a say. They advocated case-by-case decision making that reflected the choice of parents in discussion with physicians. The physicians didn’t want to leave the difficult decision up to already distraught parents. Others saw the handicapped neonates as vulnerable to discrimination and needing protection.¹
Several other Baby Doe cases between 1982 and 1984 also involved parental decisions to forgo surgery for severely disabled newborns. The legal controversy and public debate about care of all newborns with serious disabilities was extensive.¹⁷

Enter the philosophers—1970
In the 1970s, some of the philosophers and theologians who had originally been drawn into ethics discussions by the redefinition of death and Baby Doe founded institutions that gave permanence to the new bioethics movement. Daniel Callahan, with a doctorate in philosophy from Harvard, and Willard Gaylin, a psychiatrist, founded the Hastings Institute of Society, Ethics, and Life Sciences in 1969. Their goal was to address the fundamental issues in health, medicine, and the environment. The Hastings Institute became a think tank for scholars and research about bioethics that focused on four areas: the care of the dying, population and reproductive biology, genetics, and the use of medical means to modify mood and behavior.¹⁸

Another philosopher, Albert Jonsen, Ph.D., left the Jesuit order to join the University of California, San Francisco, where he became adjunct associate professor of bioethics at the medical school in 1972.³ He created an interdisciplinary group to explore critical issues in the newborn ICU, organized a conference that laid out guidelines for neonatal decision making, and established resuscitation criteria.¹

Jonsen’s book Clinical Ethics helps provide a framework for bioethical decision making. Jonsen now is professor emeritus in the department of medical history and ethics at the University of Washington School of Medicine.³

In 1971, the Kennedy Institute of Ethics was established at Georgetown University. The teaching and research center offers ethical perspectives on major policy issues and is devoted to biomedical ethics. It also houses a library of ethics and produces Bioethicsline, an online ethics database.¹⁹

Several books published in the late ’70s and early ’80s helped define the conceptual structure of bioethics. Joining Jonsen’s Clinical Ethics, Beauchamp and Childress’ Principles of Biomedical Ethics, first published in 1979 and now in its fourth edition, explains the major bioethics theories, principles, and concepts. But it wasn’t until 1991 that David Rothman’s Strangers at the Bedside provided a comprehensive history of bioethics.

Tuskegee—1972
In 1932, the U.S. Public Health Service (PHS) had begun the Tuskegee Study of Untreated Syphilis in the Negro Male. Lured by the offer of free medical care, 400 sharecroppers in Macon County, Ala., were part of an experiment from 1932 to 1972. The men had not been told that they had syphilis, nor had they been given treatment during the course of the study, even though treatment was available in the form of arsenic and bismuth before 1945 and penicillin afterward.²⁰ The explanation of the PHS was that with the advent of penicillin, researchers would never again be able to study the long-term effects of syphilis. The study ended in 1972 when one of the researchers, Peter Buxtun, who had been critical of the study since 1966, reported it to the Associated Press, and a newspaper article appeared that shocked the country.²¹

Twenty-five years later the reverberations were still being felt. In 1997, the TV movie “Miss Ever’s Boys,” the true story of the African-American nurse Eunice Rivers who stayed with the Tuskegee study, was aired.²¹ On May 16, 1997, President Clinton formally apologized for the Tuskegee study on behalf of the U.S. government. The president said the study at Tuskegee had sown distrust of our medical institutions and research, and he committed the NIH to strengthening researchers’ training in bioethics.²² Clinton announced a planning grant to Tuskegee University to build a Center for Bioethics in Research and Health Care and the creation of bioethics fellowships for minority students, offered by the Department of Health and Human Services.²²

The Tuskegee study came to stand for the exploitation of African-Americans and other vulnerable groups in the United States and helps to explain the lack of African-American participation in medical studies and organ donation.²⁰

AHA Patient’s Bill of Right—1973
Against the backdrop of eroded confidence in physician-researchers, a group dedicated to the rights of patients in public hospitals, the National Welfare Rights Organization, presented a list of 26 proposals to the Joint Commission on Accreditation of Healthcare Organizations (JCAHO).

The patient’s rights were the right to privacy, the right to receive information about their medical treatment, and the right to consent or decline to participate in research studies. The JCAHO incorporated a number of the proposals into its Accreditation Manual, and the American Hospital Association (AHA) adopted them as the Patient’s Bill of Rights in 1973.^1,23 (See Page 10.) Although the statement of these rights carries no provision for enforcement or penalties, their publication influenced attitudes and practices of physicians and patients.¹ By the close of the 1970s, 90 percent of physicians reported that they usually did tell patients of a diagnosis of cancer.¹

Two other events occurred in the 1970s that affected the rights of patients. In 1973, the Supreme Court expanded the right of private decision making in Roe v. Wade, citing the right of privacy and maximizing the autonomy of the mother in upholding her right to terminate pregnancy. In the same year, Congress passed the Vocational Rehabilitation Rights Act, Section 504, to uphold the rights of the disabled. The act helped to change attitudes about which newborns should and should not be treated.¹

Quinlan—1976
In 1976, the parents of Karen Ann Quinlan petitioned the New Jersey Supreme Court to allow the removal of the respirator from their severely brain-damaged daughter. The Quinlans’ lawyer argued that the patient, not the physician, had the right to decide when to decline treatment.²⁴

The justices ruled that the life support could be removed if an ethics committee determined that their daughter had no chance of returning to a cognitive state. The justices had been impressed by an article by pediatrician Karen Teel that recommended physicians share responsibility for decision making with “an ethics committee composed of physicians, social workers, attorneys, and theologians.”²⁵The justices also recommended that all hospitals establish ethics committees to improve medical decision making.²⁴

Although the ethics committees envisioned by the Teel article were prognosis committees, the decision in the Quinlan case marked a change in U.S. health care. It established the right of the individual and ended the era of physicians as the only decision makers.¹ After Quinlan, the public became interested in participating in decision making and many signed living wills.¹

President’s Commission—1978
Between 1968 and 1973, the scandals in human experimentation increased public support for a congressional commission to recommend policies.
In 1974, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research held hearings, chaired by Sen. Edward Kennedy. The senators were especially concerned about physicians’ doing genetic research and psychosurgery with no oversight. They worried that the brunt of the research rested on the disadvantaged, the poor, and the institutionalized.¹

In 1978, the National Commission was transformed into the President’s Commission for the Study of Ethical Problems in Medicine. Between 1980 and 1983, the commission published a number of reports. One, Deciding to Forgo Life-Sustaining Treatment, urged hospitals to develop explicit policies on decision making and ethics’ committee review when family and physician differed about life-sustaining interventions.²⁶ After its publication in 1983, many hospitals developed ethics committees, with nurses included in the policy development and decision making.

Nursing Home Reform Act—1987
In the 1970s and 1980s, the public became aware of serious problems in nursing homes involving the injury and deaths of elderly residents. The resulting outcry prompted Congress to commission a study by the Institute of Medicine in 1985. Two and a half years later, the IOM report “Improving the Quality of Care in Nursing Homes” documented widespread abuse and neglect of elders in nursing homes.
As a result, Congress passed the Nursing Home Reform Act in 1987 as part of the Omnibus Budget Reconciliation Act, or OBRA ’87. The legislation emphasized the rights of nursing home residents, including the right to choose their own physician, to participate in planning their own care and treatment, to be free from physical or chemical restraints not required to treat a medical symptom, and to be free of abuse and neglect. The law gave federal and state surveyors inspecting nursing homes the ability to issue deficiency citations to facilities that violate residents’ rights.

Nancy Cruzan—1990
In 1983, 25-year-old Nancy Cruzan was pronounced dead by police at the scene of an auto accident. She was resuscitated by paramedics, but never regained consciousness and lapsed into a persistent vegetative state, her nutrition and hydration maintained by a gastrostomy tube.²⁷

When her parents asked the hospital to remove her feeding tube, the hospital refused, and the dispute moved to court. The Missouri Supreme Court ruled that there must be “clear and convincing” evidence of a patient’s prior wishes before tube feeding could be terminated. This decision focused national attention on advance directives.

Patient self-determination—1991
As a result of the Cruzan decision, the Patient Self-Determination Act was passed and took effect Dec. 1, 1991.28 The act required all facilities receiving Medicare to inform patients about their right to refuse treatment and to ask if they wanted to prepare an advance directive, a living will or durable power of attorney for health care (DPAHC). The act allows patients to record their wishes about do-not-resuscitate (DNR) and resuscitation, as well as about withdrawing life-sustaining treatment. Patients may ask nurses questions about their right to refuse treatment, and nurses need to be able to answer those questions and advocate for them.²⁸

Newly formed ethics committees drew up DNR policies that required the patient’s approval. Before hospitals had DNR policies, physicians often unilaterally decided who would not be “coded,” and nurses penciled “DNR” on the Kardex or placed colored dots on 3-by-5 cards above the designated patients’ beds. These were not official parts of the patient’s chart and could be erased or eliminated if the patient died and relatives claimed that enough wasn’t done. But the new DNR policies required that physicians discuss the subject with patients and then write a DNR order, if appropriate, in the chart. These policies brought wider patient and family involvement in decision that affect their lives and eliminated nurses’ surreptitious practice of making pencil marks on charts or keeping cards with colored dots.

Physician-assisted suicide—1995
Several states in recent years have attempted to enact a physician-assisted suicide statute, but all failed except one. In January 1995, Oregon voters approved the Death With Dignity Act. Competent adults who are residents of Oregon, who have been determined by two physicians to be terminally ill, and who have expressed their wish to die may make a written request for medication to end their lives.²⁹ This differs from euthanasia in that the physician gives the patient a prescription for the medication, but does not administer it.

The passage of this law can be seen as one more expression of patient autonomy, the desire of patients to take medical decision making about life and death into their own hands. The law has also caused physicians and nurses to focus on providing better pain control to dying patients.
Soon after passage of Oregon’s Death With Dignity Law, the Oregon Nurses Association drew up guidelines for the rights and responsibilities of nurses under the new law.³⁰ The Center for Ethics in Health Care at the Oregon Health Sciences University in Portland also maintains an extensive Web site with information about the issue.²⁹

Gene therapy and into the future
Scientific advances in gene therapy allow the possibility of treating an array of diseases. But, just as in the 1940s, problems of abuse of human subjects of research persist, despite government regulations to prevent them. The death of 18-year-old Jesse Gelsinger on Sept. 17, 1999, at the University of Pennsylvania is a case in point.³¹ Gelsinger died of multiple organ failure caused by a severe immune reaction to an infusion of genes designed to correct his ornithine transcarbamylase deficiency, an inherited enzyme deficiency in which the liver is unable to process ammonia, a toxic break-down protect of protein. He had kept his relatively mild form of the disease in check through diet and drugs but participated in the experiment to test a treatment for babies with a fatal form of the disease. The Food and Drug Administration shut down the experiment in January 2000 after an inspection revealed serious deficiencies. Among them were the fact that Gelsinger never should have been treated because his liver was not functioning well enough. It was also revealed that scientists had failed to report serious side effects in other patients that could have put a halt to the study.³²

The FDA also found serious flaws in the Penn scientists’ informed consent discussions, in which they would have explained the benefits and risks of the experiment, as well as their documentation of those discussions. Gelsinger’s father said he was told too little about the risks of the procedure, which included hepatitis, liver damage, and the remote chance of death.³²

According to Donna Shalala, then-secretary of Health and Human Services, the human subjects in the gene-transfer trial of which Gelsinger was a part were not adequately protected, and the research had the appearance of substantial financial conflicts of interest.³¹ Academic researchers serving as both investigator and patent holder of a product increases the potential for conflict of interest and raises ethical dilemmas.³¹ Several physicians involved had financial stakes in the successful outcome of the experiment, one as a patent-holder of the genetic procedure being tested and another as a founder and stockholder for a biotechnology firm providing financial backing to Penn’s genetic institute, although it did not fund Gelsinger’s study.³² On Sept. 19, 2000, Gelsinger’s family filed a wrongful death lawsuit against the university and five physicians, accusing them of failing to follow federal rules governing medical experiments and failing to properly inform Gelsinger of the risks.³³

After Gelsinger’s death, the NIH also discovered hundreds of unreported adverse events among volunteers in other gene-transfer experiments. On May 23, 2000, the Department of Health and Human Services announced additional steps to improve the safety of subjects in clinical trials, including legislation allowing the FDA to levy penalties for violations of informed consent of up to $250,000 per clinical investigator and up to $1 million per research institution.³¹

Conclusion
Up until the mid-1960s, a paternalistic “doctor-knows-best” consciousness dominated medical decision making; a utilitarian mind-set ruled medical research. But a number of events brought changes. Memorial Hospital v. Darling in 1965 brought nursing advocacy for patient’s rights. Henry Beecher’s article in 1966 increased the public’s awareness of abuses in human experimentation and brought regulations of federally funded research by the NIH in the form of institutional review boards. The 1960’s scarcity of dialysis machines prompted community decision making. Heart transplantation brought the need to redefine death, bringing the new breed of bioethicists into the debates. The AHA’s 1973 Patient’s Bill of Rights followed Tuskegee and its erosion of public confidence in physician-researchers. Controversies in the 1970s about several Baby Does increased the involvement of bioethicists. The 1976 Quinlan decision brought an interest in ethics committees. Senate concern over 1980s unregulated genetic research and psychosurgery brought the President’s Commission for the Study of Ethical Problems in Medicine and its publication of Deciding to Forgo Life-Sustaining Treatment, among others. The Cruzan decision in 1990 brought the Patient Self-Determination Act a year later.

Increasing technology, nursing advocacy for patients’ rights, and growing patient demands have changed the paternalistic consciousness that dominated decision making into one of increasing patient autonomy. But as health care enters the 21st century, the Gelsinger case should serve as a cautionary tale. Nurses who understand the history of bioethics know how easily vulnerable patients can be put at risk. That knowledge should strengthen nurses’ advocacy for the rights and well-being of patients.

Chapter Two --The Language of Bioethics: Theories, Principles, and Terms

As the field of bioethics has evolved, organized concepts and ways of thinking about ethical dilemmas have developed, along with the terms that describe them. Nurses need to understand these bioethical terms and concepts so they can better identify and assess the ethical aspects of patient care that they may encounter in the workplace. Bioethical concepts are divided into theories, major principles, and the rules that derive from them.¹

Ethical theories
A theory is an integrated body of principles and rules. Ethical theory provides a framework within which nurses can assess the acceptability of actions and the morality of judgments.¹ Two major types of ethical theory are consequentialist and deontological.² Other theories in use are case-based reasoning, ethics of care, and virtue-based ethics.

Utilitarianism
Utilitarian theory (also called consequentialist or teleological theory) maintains that the moral rightness of an action is determined by its consequences. A utilitarian would consider lying justified if the benefits of doing so outweighed the harm.² In a choice between two equally effective treatments, the one that benefits the patient the most and has the least risk and cost is chosen, thus weighing the burdens vs. benefits of the treatment.¹

Utilitarianism is also used to allocate scarce health care resources. The use of triage in battle, during national disasters, and in emergency rooms is one example. Patients are sorted into groups, with those who need minimal attention to recover cared for first, and those more seriously injured are treated later.³

Criticisms of the theory are that it permits the interests of the majority to override the rights of the minority, the powerful over those with less power; it says nothing about unjust social distributions; and it has been used to justify morally unacceptable actions.¹ An example is the use of mentally retarded children in hepatitis research on the grounds that finding a cure would benefit greater numbers of people.⁴

Deontological theory
By contrast, deontological, or obligation-based theory, argues that some actions are inherently right or wrong, regardless of their consequences. The word deontology derives from the Greek word for duty. The theory is sometimes called Kantianism, after the philosopher Immanuel Kant (1724-1804).¹ Deontology is based on pure reason and requires that morally valid reasons justify actions. Universal truths apply to all people, in all times and situations.⁵ Deceiving a patient is wrong, whether or not the patient detected the deception. If it is the duty of a nurse to protect his or her patients, then deontology requires that the nurse has a binding moral duty to do this in all circumstances. Criticisms of deontology are that it is too rigid for real life, that reason alone is not sufficient to make binding rules, and that the consequences of certain actions can be disastrous.⁵

Causistry
Case-based reasoning, or causistry, focuses on practical decision making in specific cases. Instead of appealing to universal principles, it starts by identifying features of the case and goes on to identify the relevant precedents and prior experiences from other cases. Similar cases operate as sources of authority to guide new judgments. Criticisms of case-based reasoning are that it doesn’t provide a basis for deciding which factors to weigh more heavily in making decisions.²

Ethics-of-care theory
Ethics-of-care theory focuses on the importance of maintaining or restoring relationships among patients and their families, as well as helping them to avoid interpersonal conflicts. This is sometimes referred to as “feminist” ethics because the caring, compassion, and responsiveness to needs that it emphasizes are often seen as “feminine” compared to the “masculine” orientation of using abstract principles to dispassionately evaluate conflicts. Criticism of this theory is that it is incomplete and lacks comprehensiveness.²

Virtue ethics
Virtue ethics emphasizes the characteristics of the caregiver over his or her specific actions in following ethical principles.2 It asks if the nurse is a good nurse and if he or she exhibits the qualities of compassion, dedication, and integrity. The criticisms of virtue ethics are that it doesn’t provide directions for decision making in specific situations, that its traditional emphasis makes morality dependent on past experiences instead of on reason, and that duty derived from social roles can lead to the perpetuation of sexism and class-ism.⁵

All of these theories have something to teach nurses about the different ways of viewing ethical dilemmas. By linking them with general principles and the rules that derive from them, we can gain a deeper understanding of the language of bioethics.

Universal principles
Principles are general and fundamental. The major bioethical principles are respect for autonomy, beneficence, nonmaleficence, and justice.¹

Autonomy
The word autonomy comes from the Greek autos (self) and nomos (governance). The principle of respect for autonomy means that nurses have the obligation to help the patient act autonomously based on his or her values and beliefs. We assume that the patient has the capacity to act intentionally, with understanding of the options presented, and without controlling influences that would prevent the decision from being free and voluntary. A person’s autonomy is violated when he or she is treated as a means to meeting another’s goal without regard for his or her own goals.¹

The rules for informed consent derive from the principle of autonomy and require that patients receive all relevant information, stated in a way they can understand. It also requires that people have the mental competence to understand what is told to them, that they are capable of giving their permission, and that they are free of coercion. That this is not always the case was shown by one survey in which 29 percent of physicians in training reported intentionally manipulating a patient to accept or reject a procedure or test, and 30 percent of those said they did not believe this represented an ethical dilemma.6 (See Chapter 5 for the nurse’s role in assessing the patients’s capacity as well as the nurse’s responsibility to provide the patient with all the essential information to make a decision.)

A person with decision-making capacity is one who is conscious and who understands the nature and consequences of that to which he or she is consenting. The ability to decide can be hampered by a lack of information, as well as a ack of mental capacity. The power to act on decisions could also be hampered by physical restraints. The term self-determination is synonymous with autonomy.¹

Sometimes patients make choices with which their caregiver disagrees. The American Hospital Association’s Patient’s Bill of Rights states that patients in hospitals and institutions have the right to refuse treatment and to be informed of the medical consequences of that action. The term patient’s preference assumes that the patient’s choice of medical treatment is based on his or her own values and personal assessment of the benefits and burdens. When we speak of quality of life, we mean the subjective satisfaction experienced by the patient in his or her life in its physical, mental, or social aspects. When the patient makes a choice that the clinician thinks is unwise, a process of clarification and negotiation can sometimes be helpful.⁵

The principle of respect for autonomy does not apply to people not in a position to act in an autonomous manner. This means that infants, suicidal people, and drug-dependent patients may be validly controlled on the grounds of benefilcence to protect them from harm.¹ Under the principle of beneficence, the nurse may legitimately restrain a patient from exercising his or her autonomy by trying to jump out a window.3 But people judged mentally incompetent are still capable of making autonomous choices about what they want to eat or what clothes they wish to wear.¹

Constraint of a person’s autonomy is permissible when the person’s choices and actions infringe on the rights and welfare of others.⁷ Public health officials have detained patients with infectious tuberculosis to prevent spread of the disease.⁸ More controversial was the holding of more than 200 non-infectious people because they were noncompliant with treatment for periods of up to two years as late as 1993 in New York.⁸

The intentional limiting of patients’ autonomy “for their own good” is the definition of paternalism.5 This is the old-fashioned “doctor-knows-best” attitude of physician to patient. One form of paternalism is benevolent deception, in which the clinician purposely withholds information because, in his or her judgment, the information may be too upsetting for the patient.⁵ Physicians in the 1970s made unilateral decisions to not treat deformed newborns without consulting the parents because they thought they were saving the parents from the emotional burden of decision. But public outrage when this practice was exposed led to including parents and others in the decision-making process.⁴

Clinicians may use benevolent deception if they think patients wouldn’t want to know their diagnosis. But a number of studies have shown that patients do want to know the truth.⁹ Clinicians may refrain from telling patients difficult truths because they feel uncomfortable doing so. In response to this, some medical schools have started teaching students how to break bad news to patients.¹⁰ The Ethics in Medicine Web site at the University of Washington School of Medicine contains a six-step protocol titled Breaking Bad News. Its topic headings are How to Get Started, How to Find Out How Much the Patient Knows, Finding Out How Much the Patient Wants to Know, Sharing the Information, Responding to Patients’ Feelings, and Planning Follow-Through.¹⁰

Respect for patient autonomy is an important principle, but caregivers also have autonomy. When the Oregon physician-assisted suicide statute became law, nurses opposed to suicide on moral grounds were concerned about their ability to exercise their professional autonomy without abandoning their patient. In response, the Oregon Nurses Association drew up a policy clarifying the nurses’ rights and responsibilities under the law. The association’s White Paper on Assisted Suicide provides guidelines for ethically withdrawing from a case without abandoning the patient for nurses who do not want to be involved, as well as guidelines for nurses willing to care for the patient who is committing physician-assisted suicide.¹¹

The rules of veracity, fidelity, and confidentiality are also derived from the principle of autonomy.
Veracity is truth-telling, the rule that it is wrong for a nurse to lie to a patient. The patient needs to receive factual information so he or she can make appropriate autonomous decisions. The clinician is bound by his or her role to disclose all relevant information and not omit information that should be given. This is called role fidelity.

Fidelity means faithfulness to promises. Lying to patients under the guise of concern for their welfare interferes with patients’ autonomy and damages the credibility of the nurse because patients trust nurses to tell the truth. Patients who discover that a nurse has deceived them, such as in the case of receiving a placebo, will lose trust in many of the nurse’s future actions. When lying seems unavoidable, more effort needs to go into finding another solution.⁵
Confidentiality means keeping information patients reveal to their health care provider confidential. This is an aspect of respecting their autonomy that can be violated. In one study, physicians and students reported discussing cases at parties and with their spouses and identifying patients by name to a much greater degree than patients thought had occurred.¹²

Although the principle of respect for autonomy is of major importance, other principles such as nonmaleficence, beneficence, and justice have as much or more weight, depending on the situation.¹

Beneficence
The principle of beneficence means that care providers have the obligation to promote the health and welfare of the patient, and not merely refrain from causing harm.⁵ Beneficence requires positive action. The principle of beneficence is a primary goal of nurses and other health care providers.
In some situations, the principle of respect for patient autonomy may conflict with the principle of beneficence. Health care professionals’ education and experience gives them the ability to determine the patient’s best interests. Patients may be justifiably detained if they are at risk of preventable harm, especially if the action will prevent the harm, if the benefits outweigh the harm, and if the least autonomy-restrictive method to reduce the risk is employed.¹ People with dementia or those who are suicidal fall into this category.

Nonmaleficence
The principle of nonmaleficence means the obligation to refrain from harm.¹ If the nurse cannot bring about good for the patient, the nurse is bound by duty to at least avoid harm.5 Nonmaleficence affirms the need for the nurse to be competent in caring for patients and expresses nursing’s commitment to the protection of patients.

The standard of due care specifies the principle of nonmaleficence. Negligence is the departure from the standard of due care toward patients and includes intentionally imposing unreasonable risks as well as unintentionally imposing risks through carelessness.¹ Nurses can be held morally and legally blameworthy if they fail to provide care that avoids or minimizes the risk of harm to patients.

Professional malpractice is negligence in which the standards of care have not been met.⁵ The nurses in Memorial Hospital vs. Darling were found negligent when Dorrence Darling’s broken leg became gangrenous and had to be amputated. By not reporting the condition of the cast and the physician’s negligence, the nurses had not prevented the patient’s harm, nor acted according to the principle of nonmaleficence.

The debate about forgoing life-sustaining treatment also falls within the category of nonmaleficence. Caregivers may view the act of withdrawing life-sustaining treatment as making them responsible for the patient’s death and therefore different from the act of never starting the life-sustaining treatment. Caregivers, patients, and families may worry about the distinction between withholding and withdrawing treatment because they think a therapy once begun cannot be stopped. But in some cases it is only after a treatment has been started that a proper diagnosis and prognosis can be made.¹

Treatment that can be withheld can also be withdrawn. Patients or their surrogates have the right to forgo treatment at any time under the principle of respect for autonomy. Their decisions should be based on considerations of the burdens and benefits of treatment from the patient’s or surrogate’s standpoint. This is true for do-not-resuscitate orders, as well as other treatments.¹

A do not resusciate order, or “no code” order, means that cardiopulmonary resuscitation is not to be attempted. Only when a DNR order is written may CPR be omitted. Decisions for writing a DNR order are based on the patient’s preference, determinations of medical futility, and the patient’s quality of life.⁸ The presence of a DNR order does not imply the withdrawal of other types of care. Each treatment should be evaluated individually for appropriateness according to the burdens vs. benefits to the patient.

Patients who are unconscious or mentally incompetent but who completed an advance directive in the past can have their treatment wishes known through that document. There are two forms: living will and durable power of attorney for health care.5 A living will is a document that states the person’s desire to have life-sustaining treatment withheld or withdrawn if no reasonable expectation of recovery exists. The laws governing living wills vary from state to state. In some, the living will is in effect only if the patient is terminally ill and death is imminent.5 This can limit its practicality. A durable power of attorney for health care (DPAHC) is a statute passed by state legislatures that authorizes people to appoint a surrogate decision maker to make health care decisions for them if they become unable to do so. The surrogate named should be a person who knows the wishes of the patient and can express them to clinicians if the patient is unconscious or mentally incompetent.⁷

Some people tell their surrogate that if they are permanently unconscious or in a persistent vegetative state, they would not want to be kept alive with tubes. A persistent vegetative state is a loss of self-aware cognition in which wake and sleep cycles and other autonomic functions remain intact, lasting at least a month.^2,7 This condition can occur after severe cerebral damage or develop gradually as the result of progressive dementia.⁷ Awakening from a vegetative state caused by a nontraumatic injury is rare after three months; awakening from one caused by trauma rarely occurs after 12 months.²
If an unconscious or mentally incompetent patient does not have an advance directive, his or her family or significant others must designate a surrogate decision maker. The patient’s closest family member is a good choice as surrogate if he or she is competent, has enough knowledge and information, is emotionally stable, is committed to the incompetent patient’s interests, and is free of conflicts of interest.¹ In cases of conflicting judgments between family members or caregivers, a referral to the institution’s ethics committee can be made. Court should be the last resort.

The physician’s code of “do no harm” is a statement of nonmaleficence. But some treatments can be double-edged. Morphine given to relieve a terminally ill patient’s pain may suppress respirations and bring about death. As long as relief of pain, not the death of the patient, was the goal, providing adequate pain control for patients with terminal illness can be justified under the principle of double effect.
The guiding elements of the principle of double effect are that the course chosen must be good, good must not follow as a consequence of a secondary harmful effect, harm must never be intended, and the good must outweigh the harm.⁵ Not giving terminally ill patients enough pain medication for fear of killing them has led to painful deaths for patients and is the stated reason behind citizens groups’ calls for physician-assisted suicide.¹³

Futile care is care that will not cure the underlying condition nor make the patient more comfortable. But the term futility has been used both to express value judgments about what is worth the effort as well as scientific judgments.¹ Given the possibility of error in this judgment, caution should be used because clinicians are not obligated to provide futile treatment and are permitted to make the decision to forgo such a treatment unilaterally without discussion with patients or surrogates.²

Such decisions involve quality of life judgments. Treatment may justifiably be withheld or withdrawn in patients whose quality of life is so low that the treatment produces more harm than benefit for them. But justified criteria should be required in the evaluation of burdens and benefits so that arbitrary decisions that could threaten the rights of disabled patients are not made.²

Some people may decide that their quality of life is so diminished that they do not wish to live, and they ask their physician for help in dying. This may be because they are severely disabled or terminally ill. Physician-assisted suicide refers to the death that a mentally competent person chooses and causes by self-administering a medication that the physician prescribes but does not administer.⁷ Physician-assisted suicide is legal only in Oregon for those Oregon residents diagnosed as terminally ill. Physician-assisted suicide is distinct from euthanasia, in which the physician administers the medication to a requesting or unconscious patient. In physician-assisted suicide, a patient must be able to self-administer the medication.

The topics of physician-assisted suicide and euthanasia inevitably prompt discussion of the slippery slope. The slippery slope refers to the idea that acceptance of one act or step makes the next one more acceptable.⁸ Attitudes about respect for life can be altered by changes in public policy. If decision makers judge that certain newborns and elderly adults have burdensome lives or that their lives are of no value, this same argument can be made for other groups of frail and debilitated patients who pose financial burdens on their families and society.¹

Justice
The bioethical principle of justice means treating people fairly and equally. In health care, distributive justice means the fair and equitable distribution of health care resources within a community.¹ People who are equals should receive an equal allocation of health care resources and have fair access to it. When dialysis machines were scarce in the 1960s, the committee that made allocation decisions based on “social worth” criteria was criticized as being unfair.

Just access means the ability of people to get the health care that they need. Medicare is an example of just access because it treats all seniors fairly and equally. Medicaid provides access to those who meet certain qualifications. The present U.S. health care system has been criticized as being unjust because of the many inequalities that exist in access and allocation. Financial barriers limit the access of some people to health insurance, and pre-existing conditions limit the access of others. Financially distressed hospitals often find ways to prevent the admission of patients with no money and no insurance.¹

Just access to health care depends on fair opportunity.¹ At present, health care is not considered a right in the United States. However, a broad consensus is emerging that all citizens should have access to health care; the disagreement is over the solutions and methods of financing.¹ There are two arguments in favor of the moral right of all citizens to health care. The first is that of collective social protection. The government protects its citizens against crime, fire, and pollution. Consistency suggests that health should also be a collective responsibility.¹ The second argument is that of fair-opportunity. The justice of social institutions is gauged by their ability to counteract events over which a person has no control. Health problems create disadvantages and reduce a person's fair opportunity to use his or her capacities.¹ (For more about this subject, see Chapter 3 under Nursing Advocacy, Managed Care.)

Just allocation: To be just, health care resources should be allocated fairly. Several methods for the fair apportionment of resources have been proposed. These include age-based rationing, such as not providing certain treatments and procedures for those over a certain age.¹ A cost-effectiveness method measures dollars per quality-adjusted life years (QALYs) to define health benefits related to the costs of a specific medical intervention.¹⁴ Another method is rationing through priorities. The Oregon Health Plan is one example. It attempts to apply the principle of justice by providing a certain basic minimum of health care for all Oregon residents.⁵

Various groups can be disadvantaged in health care if their health problems receive less research and treatment resources than others’. Women, minorities, and the disabled are sometimes disadvantaged in this way. Sex disparities exist in the diagnosis of lung cancer, diagnosis and treatment of cardiac diseases, and access to kidney transplants.¹ Stereotypes, prejudices, and role attributes can make providers see women’s health complaints as being due to emotional rather than physical causes.¹⁵ Racial disparities exist in access to care and allocation of resources in many areas.

The bioethical principle of justice requires that those making the health care allocation decisions be free from the influence of personal financial benefit. Tying financial incentives to clinician and manager underuse of resources, such as withholding medically indicated tests and referrals, is unjust as well as unethical.¹⁴

Many think the for-profit system of American health care is unjust.¹⁶ For-profit managed care organizations are under enormous pressure to achieve quarterly profits for their stockholders.¹⁴ Aetna/US Healthcare, which insures 19.5 million Americans, reported a three-month profit in 2000 of $134 million, over and above its administration, marketing, and lobbying costs.¹⁷ Critics of for-profit health care say such profits would be better used to extend the access of health care to more people. However, for-profit managed care organizations say they benefit the public because they increase access to health care services, provide affordable premiums, and improve claim turnaround time, leading to more cash flow for physicians.¹⁸

Nurses are the health care providers most continually in touch with patients. For this reason, they are able to observe the justice of the U.S. health care system and assess whether patients are receiving just access and just allocation of resources. Nurses can participate in the public debate about ways the system can be made more just. By working with state nurses organizations and local governments and by writing letters to political leaders about health care, nurses can help bring about greater justice for patients in the U.S. health care system.

Conclusion
A knowledge of bioethical theories and principles can give nurses a greater awareness of the ethical issues that confront them in the workplace. By understanding the theories of deontology and utilitarianism; the principles of respect for autonomy, beneficence, nonmaleficence, and justice; the rules of informed consent, confidentiality, veracity, and fidelity; and the values attached to each of them, the nurse has a foundation from which to make ethically sound decisions in patient care.

Chapter Three--Ethics in Nursing

Nursing is a moral profession: Nurses are charged with doing good for patients and avoiding harm. Although the new discipline of bioethics has defined the principles of respect for autonomy, nonmaleficence, beneficence, and justice, these concepts have always been a part of nursing. But technological advances in health care require that nurses expand their instinctive understanding of ethics into one of reasoned and deliberate knowledge. There are several ways that nurses can do this.

By reading and reflecting on the American Nurses Association (ANA) 2001 Code of Ethics for Nurses with Interpretive Statements,.¹ nurses can gain a deeper understanding of the ethical principles that guide the profession. By becoming involved in a nursing ethics committee, nurses can clarify their thinking about the ethical dilemmas that they encounter in the workplace. Nurses who find that they are attracted to ethics can consider obtaining an advanced degree in bioethics. And finally, by gaining an insight into the ethical issues of managed care, nurses can advocate for the health care of the broader community.

The Code of Ethics for Nurses
A code of ethics is a tool a profession uses to define itself. It serves to remind the professional and the public how the professionals think of themselves and the serious responsibilities they embrace.2 The first code of ethics for nurses, referred to as the “Nightingale Pledge,” was patterned after the physicians’ Hippocratic Oath and adopted in 1893. Other codes were suggested in 1926 and 1940, but it wasn’t until 1950 that the American Nurses Association’s House of Delegates adopted the Code for Professional Nurses, with 17 provisions. In 1985, another code condensed the original 17 provisions to 11, and added interpretive statements. The newest Code, The Code of Ethics for Nurses with Interpretive Statements, was adopted in 2001 and represented the first time in 25 years that the entire code was revised.¹

All the nursing codes have addressed the importance of the principles of doing no harm, benefiting others, loyalty, truthfulness and social justice. Later versions included the importance of patient and nurse autonomy.1 The 2001 code recognizes that the present-day context of nursing practice has changed and expanded, and it places a new emphasis on nursing advocacy. It stresses the need for health care as one of the most important moral challenges of the 21st century and calls on nurses to have a true global awareness about the human condition.¹

The 2001 Code of Ethics for Nurses with Interpretive Statements has nine provisions. Together, they describe the fundamental values and commitments of the nurse, the boundaries of duty and loyalty, and nurses duties beyond individual patient encounters.¹

1. The nurse, in all professional relationships, practices with compassion and respect for the inherent dignity, worth and uniqueness of every individual, unrestricted by considerations of social or economic status, personal attributes, or the nature of health problems.¹
This provision of the code means that the nurse respects the human dignity of every individual, treats patients without prejudice regardless of the nature of their health problems, and supports their rights to self-determination while maintaining compassionate relationships with colleagues.¹

Nurses can show respect for a patient’s dignity in ways as simple as closing the privacy curtain when giving care or by addressing the patient in a respectful manner.

Practicing with respect also means providing care without prejudice toward a person’s cultural values, lifestyle, religious beliefs, disease, disability, or closeness to death. Regarding care for patients at the end of life, the code stresses that nurses should minimize suffering and relieve the pain of a dying patient even if those interventions hasten death, as long as the nurse’s sole intent is not to end the patient's life.¹

Respect for human dignity also means respect for the individual’s right to self-determination. In this provision, the code expresses the basic bioethical principle of autonomy that forms the basis of informed consent in health care. Respect for the patient’s autonomy and self-determination means that the nurse has the ethical obligation to support a patient’s decision. Even if a nurse and a physician believe that a proposed procedure is in the best interests of a patient, the patient has the right to refuse the procedure at any time, regardless of whether he or she signed a consent form, and the nurse should support the patient’s wish to do so.³

The nurse’s role in informed consent is to make sure that the patient has been given all the necessary information to make an autonomous decision. For example, a perioperative nurse, faced with a patient who is anxious because he or she does not understand fully what is going to happen in surgery, would be following the ethical principle of respect by placing the emotional needs of the patient above the conflicting expectation of the operating room for a fast turn-over time to expedite the surgical schedule.3 The test that must be met is that the patient is an adult who is capable of making a decision and who has been given all the information necessary to make an autonomous choice.³

Nurses working in institutions with rules that prevent them from answering patients’ questions about treatment options may come into conflict with this code’s obligation to advocate for the patients’ right to self-determination. Nurses need to be aware of the legal rights of patients and the resources within the community that uphold those rights. State health agencies can investigate complaints made by or for hospital patients, and ombudspersons in the Ombudsman Program, provided for by the Older Americans Act, investigate and resolve complaints made by or for residents in long-term care facilities. Complaints, including anonymous complaints, can be made to the appropriate agency when patients’ rights are not being respected.

This code’s principle of respect for others also extends to nurses’ relationships with colleagues, employees, assistants, and students. It emphasizes the importance of maintaining a compassionate commitment to fair treatment and stresses a commitment to integrity-preserving compromise to resolve conflict.¹

2. The nurse’s primary commitment is to the patient, whether an individual, family, group, or community.¹
Whether the patient is defined as an individual, family, group or the community, the nurse is expected to place the interests of the patient first, even in the face of conflicting workplace loyalties, and the nurse is expected to collaborate with colleagues, within professional boundaries, to meet the patient's needs.
When the wishes of the patient are in conflict with families, physicians, or the health care organization, nurses should attempt to resolve the conflict in ways that ensure the safety and best interests of the patient, as well as preserving their own professional integrity. If the nurse is unable to resolve the conflict, he or she remains committed to the patient.¹

In the current health care system, nurses may be pressured to reduce spending or provide care to patients based on bonuses and incentives. Nurses who must choose between their economic self-interest and their primary commitment to the patient find themselves in a conflict of interest as well as an ethical conflict.¹
Just how widespread this conflict of interest is was shown by a recent ANA survey of 1,137 nurses. Seventy-six percent of the nurses reported that their ability to exercise patient advocacy was increasingly constrained in the present health care environment, 64% said financial incentives created conflicts of interest that negatively affected patient care, and 49% said their most frequent concern was cost-containment jeopardizing patient welfare.⁴

When nurses find themselves in perceived or actual conflicts of interest, the code urges them to fully disclose their conflict in the matter to all relevant parties, including patients, employees, and colleagues and, in some situations, withdraw from future participation.1 Equal treatment of patients is mandated not only by the ethical principles of justice, beneficence, and nonmaleficence, but also by regulatory and accrediting agencies.⁴

Another way nurses maintain their primary commitment to the patient is by working collaboratively with other members of the health care team to clearly articulate the health care needs of the patient and to make sure that all relevant parties to patient care issues have a voice in decision-making.¹
The nurse’s primary commitment to the patient can also be jeopardized by a too-close relationship with a patient or a colleague. When intimacy with a patient or a close relationship with a colleague threatens to undermine the professional helping relationship with the patient, the code counsels nurses to seek assistance from peers or supervisors or withdraw from the situation.¹

3. The nurse promotes, advocates for, and strives to protect the health, safety, and rights of the patient.¹
Nurses are expected to promote the privacy and confidentiality of patients and protect the safety of patients who are the subjects of research. Nurses are also expected to promote professional standards and act on the questionable or impaired practice of anyone whose practice threatens the health, safety, or rights of the patient.

Nurses need to advocate for the rights of patients to physical privacy, privacy for their discussions, and privacy of their confidential information, whether oral, written, or electronic. This bioethical expression of the rule of confidentiality derives from the principle of respect for patient autonomy. Information about the patient should be shared only with members of the health care team who have a need to know. Third-party payers should have access only to patient information under defined protocols within written guidelines, and special effort should be taken to maintain the security of electronic communications.¹
Privacy and confidentiality associated with genetic testing are especially important as access to individual health information becomes more widespread.⁴ The availability of such data places patients with untreatable or resource-intensive conditions at risk for discriminatory practices such as being denied health care coverage or employment.⁴

Nurses must protect the rights of patients in research and be especially vigilant about protecting vulnerable groups, such as children, prisoners, students, elderly, and the poor. Patients contemplating involvement in a research project must be given enough information to enable them to understand the information and make an informed choice.¹ Such information should include the nature of their participation, the risks vs. benefits, and the fact that they have the right to choose whether to participate in the research or refuse to be involved. Patients also need to know that they can withdraw at any time without fear of adverse consequences or reprisal and how to discontinue their participation.⁴ The code states that nurses have the duty to question, to report if necessary, and to refuse to participate in research they consider morally objectionable.¹

Nurses protect the health, safety, and rights of patients by allowing only those people with knowledge, skill, and integrity to enter and practice in the profession. Nursing educators must educate and nursing administrators must be aware of nurses’ knowledge and skills before assigning them responsibilities.¹
Nurses also protect the safety of patients by being alert to the incompetent, unethical, illegal, or impaired practice of anyone who puts the rights of patients in jeopardy. If this occurs, the nurse should notify the appropriate supervisor.1 If a health care organization threatens the welfare of patients, the code advises nurses to contact the organization's administrator and appropriate higher authority if necessary.¹

4. The nurse is responsible and accountable for individual nursing practice and determines the appropriate delegation of tasks consistent with the nurse's obligation to provide optimum patient care.¹

Nurses are individually responsible and accountable for their own practice, for their judgment and action, and for the nursing activities they delegate to others. Being accountable for their practice in today’s increasingly technological health care environment means nurses must be honest about their strengths and weaknesses.⁵ If a patient's needs are beyond a nurse's skills, the nurse should ask for information and help from other nurses, health professionals, or outside resources.

Nurses are accountable for their judgment and actions, irrespective of the policies or directives of the health care organization that employs them. A nurse who blindly follows a facility policy or a physician’s written order is not released from the responsibility of that action.¹
Nurses are responsible and accountable for responsibilities they assign to other nurses, as well as for the nursing tasks they delegate to nurses aides and other health care workers. However, nurses may only delegate tasks to nurses aides and healthcare workers; they may not delegate responsibilities such as assessment and evaluation.¹

Nurses may also not assign or delegate to an unqualified person or assign a greater number of patients to a staff person than can be safely cared for. Studies have shown that better hospital nursing staffing ratios correlate positively with better patient outcomes, including fewer medical errors.⁶ Nurses who find themselves in an unsafe assignment should notify the administration or employer.¹

5. The nurse owes the same duties to self as to others, including the responsibility to preserve integrity and safety, to maintain competence, and to continue personal and professional growth.¹

The nurse has the duty to have moral self-respect, to maintain competence, to have wholeness of character, and to preserve integrity.¹
Nurses in the present health care environment may find that their duty to self to preserve their integrity is challenged. Institutional behavior that requires nurses to falsify records, withhold information from a patient, or tolerate verbal abuse from co-workers or patients threatens nurses’ integrity. In situations such as these, nurses should voice their concern to the appropriate body and work to bring about institutional change in the behavior.

When nurses find themselves in morally objectionable situations, they may express their objection and refuse to participate, but they must communicate this intention in appropriate ways. They may not abandon patients, but must care for them competently and respectfully until another source can provide care.¹
Nurses’ duty to self also includes the obligation to be competent. The obligation to be competent stems from the principle of nonmaleficence, which specifies the duty to protect the patient from harm. Nurses’ competence can affect their self-esteem, self-respect, professional status, and work satisfaction. For this reason, nurses should improve their knowledge and skills by reading, attending conferences, and taking courses.¹

Nurses’ duty to self also means a responsibility to express an authentic point of view on ethical issues, even if that opinion differs from that of other members of the health care team. In this way, nurses can grow personally and professionally. Similarly, when a patient asks a nurse’s personal opinion, the nurse may give an opinion as long as it leaves the patient free to have a differing opinion and professional boundaries are maintained.¹
6. The nurse participates in establishing, maintaining, and improving health care environments and conditions of employment conducive to the provision of quality health care and consistent with the values of the profession through individual and collective action.¹
Because the workplace environment can influence, positively or negatively, nurses’ habits of character and support for ethical obligations, nurses have a responsibility to work toward health care environments that support them.¹

All nurses have the responsibility to create, maintain, and contribute to work environments that support their growth of wisdom, honesty, and courage, as well as compassion, patience, and skill. Organizations that employ nurses can nurture these qualities, or they can diminish or thwart them. Workplace practices that present barriers to nurses’ sense of professional fulfillment, such as mandatory overtime, denial of time off, and assignments of more patients than can be safely cared-for create burn-out that increases staff turnover and affects patient care.¹

Many aspects of the organizational changes in the U.S. health care industry over the past two decades have created working conditions that jeopardize nurses’ safety.⁷ The managed care movement that has resulted in shorter hospital stays and higher acuity levels of hospitalized patients has also reduced the size of the nursing workforce in order to cut costs.

These changes, taken together, have increased nurses' workload of patients.⁷ And, according to one study of 1,163 nurses, the increased physical workload associated with lifting and transferring a larger number of patients, coupled with inadequate staffing, has resulted in a three-fold increase in neck and back injuries. Among the study participants, 20% reported having a neck injury, 17% reported shoulder injury, and 29% reported a back injury, all of them in the past year. The study concluded that “the adverse impact on health caused by the changing health care system must be addressed to prevent further injuries among nurses.”7
Nurses who work in situations that threaten their safety should address their concerns about the health care environment through appropriate channels and may participate in workplace advocacy through individual and collective action.

Nurses should work toward an environment that encourages respectful interactions with colleagues.1 Studies show that healthy nurse-physician relationships are a factor in the retention of nurses, as well as positive patient outcomes, and lower hospital recruitment costs. For this reason, many nursing leaders and CEOs are attempting to foster healthy nurse-physician communication by encouraging nurses to knowledgeably discuss the care of their patients with the patient’s physician on the unit.⁸ When nurses have the necessary knowledge and communication skills to question the care being delivered and physicians take the time to consider their points of view, patient safety and care are enhanced, and nurses gain self-esteem and enhanced job satisfaction.⁸

In many institutions, policies that have allowed only physicians to request an ethics consultation are being replaced by “any person, any time” policies for referrals that include nurses.⁸ However, according to one study, disruptive physician behavior is still a factor in the nursing shortage. In a survey of 1,200 nurses, physicians, and health care executives, 92% reported witnessing the disruptive behavior of a physician involving verbal or even physical abuse of a nurse.⁸
Silence from a physician can be just as disruptive to nurses as a screaming surgeon who throws instruments in the operating room. Physicians who do not answer pages or who refuse to communicate with nurses disrupt the workplace and lower nurses’ self-esteem.⁸

Nurses have a right to expect that facilities will set ground rules for physician behavior that encourage physicians to communicate with them clearly, directly, and with respect.⁸ Working for better nurse-physician relationships creates a healthy work environment for all health care workers, and ultimately, better care for patients.⁸

When nurses’ legitimate workplace needs for respect from colleagues are ignored, nurses should address their concerns through appropriate channels. Nurses may also participate in workplace advocacy and collective bargaining to bring about organizational change.¹

7. The nurse participates in the advancement of the profession through contributions to practice, education, administration, and knowledge development.¹
Nurses advance the profession by involvement in nursing and health care policy, development and maintenance of professional standards, and development of nursing knowledge and its dissemination.1 Nurses can advance the profession by contributing in some way to their professional organizations and to civic activities related to health care, and by maintaining their own professional standards.¹

Nursing researchers advance the profession by contributing to nursing knowledge. In some cases, nursing research has far-reaching consequences that can improve the lives of patients and nurses as well. One example of this is the study by nursing researcher Kayser-Jones and her team titled “Factors Contributing to Dehydration in Nursing Homes: Inadequate Staffing and Lack of Professional Supervision.”9 The study concluded that “when staffing is inadequate and supervision poor … residents are at great risk for dehydration.” By showing a direct, statistically relevant correlation between the rates of dehydration in elderly nursing home residents with the number of nursing staff, this study influenced elder advocacy groups and legislators. In California, legislation to increase the total nursing hours per patient day to 3.2 and eliminate the double counting of RN hours became effectiv