Eradicating the disparities in health and health care that exist between rich and poor is medicine’s biggest ethical challenge the world over. Tackling this problem is an issue not only of medical ethics but social justice and raises questions about physician’s social and political responsibilities. The obligation to work toward a more just society and system of health care is not universally acknowledged as a professional responsibility. For example, in the United States, there is no obligation for physicians to care for the underserved beyond stabilization in an emergency department or for prisoners. The health-care system and corporate interests are intertwined, with corporate prosperity often trumping patient benefit. Hospital policies, insurers, the government, as well as reigning societal attitudes toward illness and poverty increasingly influence relationships between practitioners and patients.

As health-care providers and other activists advocate for the societal changes that equity in health requires, they must also assure that the vulnerable patients actually cared for receive high-quality, ethical, and compassionate care. There may be host of complexities to navigate to assure this care. Underserved patients frequently are members of ethnic and cultural groups whose decision-making customs and values may differ from those of people from more privileged backgrounds who often dominate the health-care professions. In addition, underserved patients often have low health literacy and numeracy, less education, or significant behavioral health disorders. Thus, to participate actively in their medical decisions and care, they may need additional assistance to gain sufficient understanding of their medical situation. Mistrust of the health-care system may be a potent, but unacknowledged, force in decision making.

Ethical problems arise when it is difficult to act without compromising one ethical principle for another, or personal, professional, or societal moral standards are in conflict. There are three common types of ethical problems. One, sometimes termed ethical distress, occurs when the provider knows what the right course of action is but cannot act on it. This occurs frequently in the care of the underserved. For example, when lack of resources makes it difficult or impossible to pursue the right course of action, ethical distress is created. Ethical conflicts or dilemmas occur, on the other hand, when a course of action fulfills some moral goods but compromises others. Ethical conflicts may arise when there are competing compelling needs. A final common type of ethical quandary, referred to as a problem in locus of authority, arises not over how to approach a particular issue but in who has the moral authority to make a decision. This can be a particularly thorny issue, for example, in important treatment decisions for those with limited mental capacity to understand the risks and benefits of treatments.

The discipline of ethics provides methods and guidelines to use when approaching a difficult problem. Systematically reviewing several ethical principles can help formulate a response to ethical problems. For example, considering three fundamental but frequently conflicting ethical guidelines of justice, respect for persons, and acting in the patient’s best interests may help clarify the best response to ethical dilemmas (Box 5-1). Other approaches to ethical problems focus more on the integrity of the relationship between the provider and the patient or the consequences of a decision.

JUSTICE

The term “justice” is used in a general sense to mean fairness. John Rawls, one influential American philosopher, contends that the justness of a society should be determined by evaluating the position of its most vulnerable members. In addition, it is important to act consistently in cases that are similar in ethically relevant ways. Otherwise, decisions would be arbitrary, biased, and unfair. Justice forbids discrimination in health care based on race, religion, or gender and supports a moral right to health care, with access based on medical need rather than social or economic status.

Strong philosophical arguments support the idea that all persons should have access to a decent level of health care regardless of ability to pay; however, even with the Affordable Care Act, this is an aspiration rather than established public policy in the United States. The United States does not recognize a legal right to health care except in the emergency department (see Chapter 4) and for prisoners (see Chapter 27). Clinicians face difficulties if patients with clear need for medical care cannot pay for medications, tests, hospitalizations, home care, or other services. In health-care settings, justice often refers to the allocation of health-care resources. Allocation decisions are unavoidable because resources are limited and could be spent on other social goods, such as education or affordable housing.

RESPECT FOR PERSONS

Treating patients with respect entails several ethical obligations. First, health-care providers must accept the medical decisions of persons who are informed and acting freely. Individuals place different values on health, medical care, and risk. Hence, competent, informed patients have the power to reject their clinicians’ recommendations about care; otherwise, their integrity and liberty are violated. More broadly, patients should have the right to choose among feasible options and share decision making with health-care providers, because in most clinical settings different goals and approaches are possible, outcomes are uncertain, and an intervention may cause both benefits and harms.¹ Thus, allowing people to be active participants in decisions about their medical care respects their self-determination. In addition to respecting the decisions of autonomous patients, clinicians should take steps to promote patient autonomy, by disclosing information and helping patients deliberate.

A second meaning of respect pertains to patients whose decision-making capacity is impaired. Physicians should still treat them as persons with individual characteristics, preferences, and values. Decisions should follow their preferences and values, so far as they are known. In addition, all patients, whether autonomous or not, should be treated with compassion and dignity.

Respect also is related to other important ethical guidelines, such as avoiding misrepresentation, maintaining confidentiality, and keeping promises. Breaches of these other guidelines cause wrong or harm to patients and compromise their autonomy. Acting in the patient’s best interest and avoiding harm are other aspects of respect.

INFORMED CONSENT

Informed consent involves more than obtaining the patient’s signature on consent forms. Clinicians must discuss with patients the nature of the proposed care, alternatives, risks and benefits of each, and likely consequences and obtain the patient’s agreement to care.² Health-care providers need to educate patients, answer their questions, make recommendations, and help them deliberate. Patients can be overwhelmed with medical jargon, needlessly complicated explanations, or too much information all at once. Because underserved patients often have poor health literacy or may not speak English fluently, taking additional steps to help these patients make informed decisions (e.g., spending more time discussing unfamiliar medical terms and concepts and working with interpreters) is crucial and often ignored (see Chapters 15 and 31).

The doctrine of informed consent means that adult patients may make decisions that differ from what health-care providers recommend or what their families want them to do. Indeed, patients may refuse treatment that may save or prolong their lives, provided their decisions are informed and voluntary.

In many cultures, patients traditionally are not a grave diagnosis is believed to cause patients to suffer, whereas withholding information promotes serenity, security, and hope.³ Being direct and explicit may be considered insensitive and cruel. Families and physicians may try to protect the patient by taking on decision-making responsibility.^4,5 Family members from such a cultural background may ask the provider not to tell the patient a serious diagnosis, or even to deceive the patient into believing that there is nothing seriously wrong. Patients should not be forced to receive information against their will, even in the name of promoting informed decisions. However, the crucial ethical issue is whether the individual patient wants to know his or her diagnosis, not what most people from that cultural heritage would want. Many individuals in these groups want to know their diagnosis and prognosis, even if they are terminally ill. Therefore, health-care providers should ask patients how they want decisions to be made, saying that their usual practice is to provide information and make decisions together with patients, while offering patients the option not to be told information or turn over decision making to someone else. Respecting the choices of the patient regarding the decision-making process is important (see Core Competency).

EMERGENCY CARE

Informed consent is not required when patients cannot give consent and delay of treatment would place life or health in peril. People are presumed to want such emergency care unless they have previously indicated otherwise.

INTERVENTIONS WITHOUT THERAPEUTIC BENEFIT

Autonomy does not entitle patients or their surrogates to insist on whatever care they want. Providers are not obligated to provide interventions that have no physiologic rationale or have already failed.^6,7 For example, cardiopulmonary resuscitation would be futile in a patient with progressive hypotension despite maximal therapy. However, clinicians should be wary of using the term “futile” in looser senses to justify unilateral decisions to forgo interventions when they believe that the probability of success is too low, no worthwhile goals can be achieved, the patient’s quality of life is unacceptable, or the costs are too high. Such looser usages of the term are problematic because they may be inconsistent and mask inappropriate important value judgments.

MAINTAINING CONFIDENTIALITY

Confidentiality respects patients’ autonomy and privacy, encourages them to seek treatment and discuss their problems candidly, and prevents discrimination. However, maintaining confidentiality is not an absolute rule. Confidentiality may be overridden in certain situations to prevent serious harm to third parties or the patient.⁸ The law may require physicians to override confidentiality in order to protect third parties, for example, public health reporting of tuberculosis and syphilis. In other situations, medical providers have a legal duty to report victims of elder abuse, child abuse, and domestic violence. These exceptions to confidentiality are justified because the risk is serious and probable, there are no less restrictive measures to avert risk, the adverse effects of overriding confidentiality are minimized, and these adverse effects are deemed acceptable by society.⁹

The Health Insurance Portability and Accountability Act (HIPAA) health privacy regulations have heightened awareness of the importance of confidentiality. The HIPAA regulations are not meant to inhibit transmission of information needed for patient treatment. Disclosure of patient information to other health-care providers for the purposes of treatment without having the patient sign an authorization form is permissible except related to HIV, mental health conditions, and substance use.

AVOIDING DECEPTION

Health-care providers sometimes consider using lies or deception in order to protect the patient from bad news or obtain benefits for the patient. Lying refers to statements that the speaker knows are false and that are intended to mislead the listener. Deception, which is broader, may be defined as statements and actions that are intended to mislead the listener, whether or not they are literally true.⁹ For example, the health-care provider may tell a patient that she has a “small growth” so that she does not think she has cancer. Or the provider may complete and sign a form for a patient to get a bus pass, even though he does not meet the criteria for physical disability. Although deception under these circumstances may be motivated with a desire to help the patient, it is ethically problematic. Deception violates autonomy because the person who is deceived cannot make informed decisions if he or she receives misleading information. Furthermore, deception undermines social trust because people cannot trust that other statements by the speaker are truthful.¹⁰ If clinicians are known to use deception in some situations to help patients, they also may use it in other situations for other purposes, for instance, to deceive patients as well as third parties. It is especially problematic for them to lie or intentionally deceive others because the relationship between health-care providers and patients and society depends on trust.

The guideline of beneficence requires clinicians to act for patients’ benefit.¹¹ Lay people do not possess medical expertise and may be vulnerable because of their illness. They justifiably rely on medical providers to provide sound advice and promote their well-being. Medical professionals encourage such trust. Hence, clinicians have a fiduciary duty to act in the best interests of their patients. The interests of the patient should prevail over physicians, other providers, or third parties’ (e.g., hospitals or insurers’) interests. These fiduciary obligations contrast sharply with business relationships, which are characterized by “let the buyer beware,” not by trust and reliance.

The guideline of “do no harm” forbids physicians from providing ineffective interventions or acting without due care.¹² Although often cited, this precept often provides only limited guidance, because many beneficial interventions may have serious risks. The challenge is to provide interventions whose benefits outweigh the risks and whose risks are acceptable; both of these determinations need to be made from the perspective of the patient.

Patients’ refusals of care may thwart their own goals or cause them serious harm. For example, a patient with shortness of breath caused by a severe asthma exacerbation may refuse treatment with bronchodilators and corticosteroids. Simple acceptance of such refusals, in the name of respecting patient autonomy, is ethically problematic. Acting in the patient’s best interests requires eliciting patients’ expectations and concerns, correcting misunderstandings, and trying to persuade them to accept highly beneficial therapies. If disagreements persist after discussions, the patient’s informed choices and view of his or her best interests should prevail. Although refusing recommended, highly beneficial care does not render a patient incompetent, it may appropriately lead the physician to probe further to ensure that the patient is able to make informed decisions (see Chapter 44).

ETHICS OF CARING AND RELATIONSHIPS

Weighing the important ethical principles in a medical decision can be a detached, impersonal process. One ethical approach, known as the “ethics of caring,” recognizes that ethical decisions are embedded in relationships. Grounding actions in caring rather than on principles that are more abstract requires integration of ethical principles and reasoning but goes beyond them. Impartiality should not be the primary goal of the provider–patient relationship. Rather, the goal of caring is maintaining a partiality that inspires receptivity to the patient’s needs and willingness to take responsibility for the patient, while not showing unwarranted favoritism or arbitrariness. Caring for a patient emphasizes compassion more than fairness. Recognizing alienation as an important component of human suffering, it is an approach particularly relevant to the care of the underserved. Communication skills and self-reflection to identify what—from fatigue to prejudice—limits one’s ability to care for patients are skills highlighted by this perspective and may help eliminate what at first blush are thought of as ethical issues, but are in fact failures in communication.¹³

HELPING PATIENTS GAIN ACCESS TO CARE

Even with the Affordable Care Act, health-care resources for underserved patients may be constrained; health-care providers may need to serve as advocates for their patients to help them get needed medical care (see Chapter 8). As advocates, providers intercede for or speak on behalf of their patients.¹⁴ Advocacy should be based on sound clinical judgment and evidence. It is not doing whatever the patient requests or whatever the provider believes would be beneficial.