INTRODUCTION
For those who work in the healing professions, ethical values play a special role. The specific content of medical ethics was first formulated centuries ago, based on the sayings of Hippocrates and others. The refinement of medical ethics has continued up to the present by practicing health caregivers, health professional and religious organizations, and individual ethicists. As medical technology, health care financing, and the organization of health care transform themselves, so must the content of medical ethics change in order to acknowledge and guide new circumstances.
FOUR PRINCIPLES OF MEDICAL ETHICS
Over the years, participants in and observers of medical care have distilled widely shared human beliefs about healing the sick into four major ethical principles: beneficence, nonmaleficence, autonomy, and justice (Beauchamp & Childress, 2009) (Table 13-1).
| Beneficence | The obligation of health care providers to help people in need |
| Nonmaleficence | The duty of health care providers to do no harm |
| Autonomy | The right of patients to make choices regarding their health care |
| Justice | The concept of treating everyone in a fair manner |
Beneficence is the obligation of health care providers to help people in need.
Dr. Rolando Bueno is a hard-working family physician practicing in a low-income neighborhood of a large city. He shows concern for his patients, and his knowledge and judgment are respected by his medical and nursing colleagues. On one occasion, he was called before the hospital quality assurance committee when one of his patients unexpectedly died; he agreed that he had made mistakes in his care and incorporated the lessons of the case into his future practice.
Dr. Bueno tries to live up to the ideal of beneficence. He does not always succeed; like all physicians, he sometimes makes clinical errors. Overall, he treats his patients to the best of his ability. The principle of beneficence in the healing professions is the obligation to care for patients to the best of one’s ability.
Nonmaleficence is the duty of health care providers to do no harm.
Mrs. Lucy Knight suffers from insomnia and Parkinson’s disease. The insomnia does not bother her, because she likes to read at night, but it irritates her husband. Mr. Knight requests his wife’s physician to order strong sleeping pills for her, but the physician declines, saying that the combination of sleeping pills and Parkinson’s disease places Mrs. Knight at high risk for a serious fall.
The modern array of medical interventions has the capacity to do good or harm or both, thereby enmeshing the principle of nonmaleficence with the principle of beneficence. In the case of Mrs. Knight, the prescribing of sedatives has more potential for harm than for good, particularly because Mrs. Knight does not see her insomnia as a problem.
Autonomy is the right of a person to choose and follow his or her own plan of life and action.
Mr. Winter is a frail 88-year-old found by Dr. James Washington, his family physician, to have colon cancer, which has spread to the liver. The cancer is causing no symptoms. An oncologist gives Mr. Winter the option of transfusions, parenteral nutrition, and surgery, followed by chemotherapy; or watchful waiting with palliative and hospice care when symptoms appear. Mr. Winter is terrified of hospitals and prefers to remain at home. He feels that he might live a comfortable couple of years before the cancer claims his life. After talking it over with Dr. Washington, he chooses the second option.
The principle of autonomy adds another consideration to the interrelated principles of beneficence and nonmaleficence. Would Mr. Winter enjoy a longer life by submitting himself to aggressive cancer therapy that does harm in order to do good? Or, does he sense that the harm may exceed the good? The balance of risks and benefits confronts each physician on a daily basis (Eddy, 1990). But the decision cannot be made solely by a risk–benefit analysis; the patient’s preference is a critical addition to the equation.
Autonomy is founded in the overall desire of most human beings to control their own destiny, to have choices in life, and to live in a society that places value on individual freedom. In medical ethics, autonomy refers to the right of competent adult patients to consent to or refuse treatment. While the physician has an obligation to respect the patient’s wishes, he or she also has a duty to fully inform the patient of the probable consequences of those wishes. For children and adults unable to make medical decisions, a parent, guardian, other family member, or surrogate decision maker named in a legal document becomes the autonomous agent on behalf of the patient.
Justice refers to the ethical concept of treating everyone in a fair manner.
Joe, a white businessman in the suburbs, suffers crushing chest pain and within 5 minutes is taken to a nearby private emergency department, where he receives immediate coronary stenting and state-of-the-art treatment for a heart attack. Five miles away, in a poor neighborhood, Josephine, an African-American woman, experiences severe chest pain, calls 911, waits 25 minutes for help to arrive, and is brought to a public hospital whose emergency department staff is attending to five other acutely ill patients. Before receiving appropriate attention, she suffers an arrhythmia and dies.
The principle of justice as applied to medical ethics is newer, more controversial, and harder to define than the principles of beneficence, nonmaleficence, and autonomy. In a general sense, people are treated justly when they receive what they deserve. It is unjust not to grant a medical degree to someone who completes medical school and passes all the necessary examinations. It is unjust to punish a person who did not commit a crime. In another meaning, justice refers to universal rights: to receive enough to eat, to be afforded shelter, to have access to basic medical care and education, and to be able to speak freely. If these rights are denied, justice has been violated. In yet another version, justice connotes equal opportunity: All people should have an equal chance to realize their human potential. Justice might be linked to the golden rule: Treat others as you would want others to treat you. While there is no clear agreement on the precise meaning of justice, most people would agree that the differential treatment of Joe and Josephine is unjust.
In exploring the concept of justice, one area of concern is the allocation of benefits and burdens in society. This realm of ethical thinking is called distributive justice, involving such questions as: Who receives what amount of wealth, of education, or of medical care? Who pays what amount of taxes?
The principle of justice is linked to the idea of fairness. In the arena of distributive justice, no agreement exists on what formula for allocating benefits and costs is fair. Should each person get an equal share? Should those who work harder receive more? Should the proper formula be “to each according to ability to pay,” as determined by a free market? Or “to each according to need?” In allocating costs, should each person pay an equal share or should those with greater wealth pay more? Most societies construct a mixture of these allocation formulas. Unemployment benefits consider effort (having had a job) and need (having lost the job). Welfare benefits are primarily based on need. Job promotions may be based on merit. Many goods are distributed according to ability to pay. Primary education in theory (but not always in practice) is founded on the belief that everyone should receive an equal share (Beauchamp & Childress, 2009; Jonsen et al., 2010).
How is the principle of distributive justice formulated for medical care? Throughout the history of the developed world, the concept that health care is a privilege, allocated according to ability to pay, has competed with the idea that health care is a right and should be distributed according to need. In most developed nations, the allocation of health care according to need has become the dominant political belief, as demonstrated by the passage of universal or near-universal health insurance laws. In the United States, the failure of the 100-year battle to enact national health insurance, and the widely divergent public opinions on the 2010 Affordable Care Act, attest to the ongoing debate between health care as a privilege and health care as a right (see Chapter 15).
If the overwhelming opinion in the developed world holds that health care should be allocated according to need, then all people should have equal access to a reasonable level of medical care without financial barriers (i.e., people should have a right to health care). In this chapter, we consider that the principle of distributive justice requires all people to equally receive a reasonable level of medical services based on medical need without regard to ability to pay.
ETHICAL DILEMMAS, OLD AND NEW
Ethical dilemmas (Lo, 2013) are situations in which a provider of medical care is forced to make a decision that violates one of the four principles of medical ethics in order to adhere to another of the principles. Ethical dilemmas always involve disputes, in which both sides have an ethical underpinning to their position. Financial conflicts of interest on the part of physicians (see Chapters 4 and 10), in contrast, pit ethical behavior against individual gain and are not ethical dilemmas.
Anthony, a 22-year-old Jehovah’s Witness, is admitted to the intensive care unit for gastrointestinal bleeding. His blood pressure is 80/60 mm Hg, and in the past 4 hours, his hematocrit has fallen from 38 to 21%. The medical resident implores Anthony to accept life-saving transfusions, but he refuses, saying that his religion teaches him that death is preferable to receiving blood products. When the blood pressure reaches 60/20 mm Hg, the desperate resident decides to give the blood while Anthony is unconscious. The attending physician vetoes the plan, saying that the patient has the right to refuse treatment, even if an avoidable death is the outcome.
In Anthony’s case, the ethical dilemma is a conflict between beneficence and autonomy. Which principle has priority depends on the particular situation, and in this case, autonomy supersedes beneficence. If the patient were a child without sufficient knowledge or reasoning capability to make an informed choice, the physician would not be obligated to withhold transfusions, even if the family so demanded (Jonsen et al., 2010).
Pedro Navarro has lung cancer that has metastasized to his brain. No effective treatment is available, and Mr. Navarro is confused and unable to understand his medical condition. Ms. Navarro demands that her husband undergo craniotomy to remove the tumor. The neurosurgeon refuses, arguing that the operation will do Mr. Navarro no good whatsoever and will cause him additional suffering.
The case of Mr. Navarro pits the principle of autonomy against the principle of nonmaleficence. Mr. Navarro’s rightful surrogate decision maker, his wife, wants a particular course of treatment, but the neurosurgeon knows that this treatment will cause Mr. Navarro considerable harm and do him no good. In this case, nonmaleficence triumphs. Whereas patient autonomy allows the right to refuse treatment, it does not include the right to demand a harmful or ineffectual treatment.
The traditional dilemmas described in many articles and books on medical ethics feature beneficence or nonmaleficence in conflict with autonomy. In two famous ethical dilemmas, the families of Karen Ann Quinlan and Nancy Cruzan, young women with severe brain damage (persistent vegetative state) asked that physicians discontinue a respirator (in the Quinlan case) and a feeding tube (in the Cruzan case). Both cases were adjudicated in the courts. The Quinlan decision promoted the right of patients or their surrogate decision makers to withdraw treatment, even if the treatment is necessary to sustain life. The outcome of the Cruzan case placed limits on autonomy by requiring that life-supporting treatment can be withdrawn only when a patient has stated his or her wishes clearly in advance (Annas, 2005).
In 2005, the case of Terri Schiavo, for 15 years in a persistent vegetative state similar to the situations of Karen Ann Quinlan and Nancy Cruzan, made national headlines. In spite of multiple decisions of state and federal courts—up to the Supreme Courts of Florida and the United States—supporting the right of Terri Schiavo’s husband to discontinue Ms. Schiavo’s feeding tube, the US Congress, encouraged by President George Bush, passed legislation reopening the option of reinserting the feeding tube. Eventually, based on the precedents of the Quinlan and Cruzan cases, the courts prevailed and Ms. Schiavo died (Annas, 2005).
Overall, medical ethics has moved in the direction of giving priority to the principle of autonomy over that of beneficence.
In the late 20th century, a new generation of ethical dilemmas emerged, moving beyond the individual physician–patient relationship to involve the broader society. These social–ethical problems derive from the new reality that money may not be available to pay for a reasonable level of medical services for all people. When money and resources are bountiful, the issue of distributive justice refers to equality in medical care access and health outcomes (see Chapter 3). Is it fair that some people are unable to receive needed care because they lack money and insurance? When money and resources become scarce, the issue of justice takes on a new twist. Should limits be set on treatments given to people with high-cost medical needs, so that other people can receive basic services? If not, might health care consume so many resources that other social needs are sacrificed? If limits should be set, who decides these limits?
Angela and Amy Lakeberg [actual names] were Siamese twins sharing one heart. Without surgery, they would die shortly. With surgery, Amy would die and Angela’s chance of survival would be less than 1%. On August 20, 1993, a team of 18 physicians and nurses at Children’s Hospital of Philadelphia performed an all-day operation to separate the twins. Amy died. The cost of the treatment was $1 million. The Medicaid program covered $700 to $1,000 per day, and the hospital underwrote the balance of the costs. On June 9, 1994, Angela died; she had spent her brief life on a respirator in the hospital.
The new fiscal reality has spawned two related dilemmas.
The first involves a conflict between the duty of the physician to follow the principles of beneficence and nonmaleficence and the growing sentiment that physicians should pay attention to issues of distributive justice. In the case of the Lakeberg twins, the hospital and surgeons adhered strictly to the principle of beneficence: Even a remote chance of aiding one twin was seen as worthwhile. The hospital could have balked, arguing that its funding of the surgery would be unfairly shifted to other payers. The surgeons could have declined to operate on the grounds that the money spent on the Lakebergs could have been better used by patients with a greater chance of survival. But, the surgeons could argue, who can guarantee that the money saved would have gone to better use?
The second category of social–ethical dilemma is the conflict between the individual patient’s right to autonomy and society’s claim to distributive justice. In the Lakeberg case, individual autonomy won out. The Lakeberg parents could have decided that spending $1 million of society’s money on a less than 1% chance of saving one of two infants was excessive and could indirectly harm other patients.
Physicians take up the practice of medicine with a recognition that they have a duty to help and not harm their patients. Individuals claim a right to health care and do not want others to restrict that care. Yet the principle of distributive justice (recognizing that resources for health care are limited and should be fairly allocated among the entire population) might lead to physicians denying legitimate services or patients setting aside rightful claims to treatment.
The basis for the principle of justice is the desire shared by many human beings to live in a civilized society. To live in a state of harmony, each person must balance the concerns of the individual with the needs of the larger community. There is no right or wrong answer to the question of whether the Lakeberg surgery should have been done, but the surgery must be seen as a choice. The $1 million spent on the twins might have been spent on immunizing 10,000 children, with greater overall benefit. When health resources are scarce, the principle of justice creates ethical dilemmas that touch many people beyond those involved in an individual physician–patient relationship. The imperatives of cost control have thrust the principle of justice to the forefront of health policy in the debate over rationing.
WHAT IS RATIONING?
Dr. Everett Wall works in a health maintenance organization (HMO). Betty Ailes came to him with a headache and wanted a magnetic resonance imaging (MRI) scan. After a complete history and physical examination, Dr. Wall prescribed medication and denied the scan. Ms. Ailes wrote to the medical director, complaining that Dr. Wall was rationing services to her.
Perry Hiler arrives at Vacant Hospital with fever and severe cough. His chest x-ray shows an infiltrate near the hilum of the lung consistent with pneumonia or tumor. Since Mr. Hiler has no insurance, the emergency department physician sends him to the county hospital. At the time, Vacant Hospital has 35 empty beds and plenty of staff. When he recovers, Mr. Hiler calls the newspaper to complain. The next day, a headline appears: “Vacant Hospital Rations Care.”
Jim Delacour is a 50-year-old man with terminal cardiomyopathy. His physician sends him to a transplant center, where an evaluation concludes that he is an ideal candidate for a heart transplant. Because, the number of transplant candidates is larger than the supply of donor hearts available, Mr. Delacour is placed on the waiting list. After waiting 6 weeks, he dies.
When the emergency department called, Dr. Marco Intensivo’s heart sank. The eight-bed intensive care unit is filled with extremely ill patients, all capable of full recovery if they survive their acute illnesses. He has worried all day about another patient needing intensive care: a 55-year-old with a heart attack complicated by unstable arrhythmias. Which one of the nine needy cases will not get intensive care? Dr. Intensivo needs to make a decision, and fast.
The general public and the media often view rationing as a limitation of medical care such that “not all care expected to be beneficial is provided to all patients” (Aaron & Schwartz, 1984). Such a view only partially explains the concept of rationing. More precisely, rationing means a conscious policy of equitably distributing needed resources that are in limited supply (Reagan, 1988) (Table 13-2). Under this definition, only the last two cases presented above can be considered rationing. In the first case, Dr. Wall did not feel that the MRI was a resource needed by Betty Ailes. In the second, Vacant Hospital’s refusal to care for Perry Hiler was simply a decision on the part of a private institution to place its financial well-being above a patient’s health; there was no scarcity of health care resources. In the heart transplant and intensive care unit cases, in contrast, donor hearts and intensive care unit beds were in fact scarce. For Mr. Delacour, the scarcity was nationwide and prolonged; for Dr. Intensivo, the scarcity was within a particular hospital at a particular time. In both cases, decisions had to be made regarding the allocation of those resources.
Popular usage of the term “rationing”:
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