Patients may reject the recommendations of their physicians, refusing beneficial interventions or insisting on interventions that are not indicated. In such cases, physicians are torn between respecting patient autonomy and acting in the patients’ best interests. If physicians simply accept unwise patient decisions in the name of respecting patient autonomy, their role seems morally constricted. This chapter discusses how physicians can protect the well-being of patients, while avoiding the pitfalls of paternalism. Chapter 12 addresses how to assess the best interests of a person who lacks decision-making capacity.
Patient Refusal of Beneficial Interventions
The following case illustrates how patients may refuse beneficial interventions.
Case 4.1. Refusal of surgery for critical aortic stenosis
Mrs. N is a 76-year-old widow with aortic stenosis. For several years she has been refusing further evaluation, saying that she would not want surgery. After an episode of near-syncope, she agrees to echocardiography, mostly to humor her primary care physician. Critical aortic outflow obstruction is found. Her physician strongly recommends valve replacement. The risks of surgery are unacceptable to her, particularly the risk of prolonged hospitalization or neurologic or cognitive impairment after surgery.
Having lived a full life, she says she welcomes a sudden death rather than a prolonged decline. In the past, she has been reluctant to visit physicians, undergo tests, or take medications. She leads an active life, writing a resource book for senior citizens, leading several volunteer organizations, and enjoying concerts.
Mrs. N’s physician wanted to be sure that her refusal of aortic valve replacement was informed. He explained the situation as a dilemma: without valve replacement she might have a sudden death, but she might also have progressive disability from congestive heart failure or angina.
Valve replacement offered the prospect of avoiding such disability, but with a trade-off of major risks and recuperation. He reassured her that the decision was hers to make. She agreed to speak with a cardiologist, cardiac surgeon, and several elderly patients who had undergone the procedure. Her physician also encouraged her to bring a friend (she had no close living relatives) to these meetings. Afterwards, she still declined surgery because of the operative risks.
Several years later, transcather aortic valve replacement became available. However, her blood vessels were to narrow to allow the procedure. Two more years later, when a keyhole approach to aortic valve replacement became available, she declined because her quality of life was unacceptable because of memory loss and severe osteoarthris.
Mrs. N’s physicians believe that her refusal conflicts with her best interests. With valve replacement, she is likely to live longer and avoid debilitating symptoms, such as chest pain and dyspnea. Refusal of surgery might result in what she fears most: progressive decline and loss of independence.
How can physicians respond to Mrs. N’s refusal? On the one hand, it would be disrespectful and impractical to override her refusal and operate without her consent. On the other hand, accepting her refusal without further discussion might result in severe disability that she would not want. What attempts by physicians to persuade Mrs. N to agree to surgery are warranted? To address these issues, physicians need to understand the ethical guidelines of doing no harm and acting in their patients’ best interests.
Doing No Harm to Patients
The ethical guideline of nonmaleficence requires people to refrain from inflicting harm on others. Prohibiting harmful actions is the core of morality. For instance, the Ten Commandments prohibit killing, lying, and stealing. Avoiding harm is generally considered a more stringent ethical obligation than providing benefit.
The widely quoted maxim “Do no harm” has several distinct meanings . First, physicians should not provide interventions that are known to be ineffective. Second, physicians should not act maliciously, as by providing substandard care because they dislike the patient’s ethnic background or political views. Third, doctors should also act with due care and diligence.
Fourth, the maxim sometimes is cited as “Above all, do no harm,” or, more impressively in Latin, Primum non nocere. If physicians cannot benefit patients, they should at least not harm them or make the situation worse. Fifth, when benefits and burdens are evenly balanced, physicians should err on the side of not intervening.
The precept “do no harm” provides only limited guidance. Many medical interventions, such as the aortic valve replacement mentioned in Case 4.1, offer both great benefits and high risks and adverse effects. Doing no harm would literally preclude such interventions, yet many patients with serious illness may accept substantial risks to gain medical benefits. Furthermore, as we next discuss, merely doing no harm seems a limited view of the physician’s role.
Promoting the Patient’s Best Interests
The ethical guideline of beneficence requires physicians to promote patients’ “important and legitimate interests .” This guideline arises from the nature of the doctor–patient relationship and of medical professionalism.
The Fiduciary Nature of the Doctor–Patient Relationship
Physicians have special responsibilities to act for the well-being of patients because patients are often impaired in significant ways by their illness. Furthermore, the stakes are high; poor decisions might place patients’ health or lives at risk.
Reasons for the Fiduciary Relationship
Patients are vulnerable
Because illness often undermines patients’ independence and judgment, people might be less able to look after their own interests when they are sick.
Physicians have expertise that patients lack
Physicians have expert knowledge, as well as the experience and judgment to apply it to the patient’s individual circumstances.
Patients rely on their physicians
Even in the Internet era, it is often difficult for patients to obtain information and individualized advice except from physicians. Often, they have no previous experience in making medical decisions. With serious illnesses, patients might have little time to seek second opinions. It is hard for laypeople to determine whether a physician’s advice is sound or to evaluate a physician’s skills. Hence, patients commonly rely on the advice of their physicians.
Definition of a Fiduciary Relationship
Legally, relationships between professionals and clients are characterized as fiduciary. The term fiduciary is derived from the Latin word fidere, to trust. Fiduciaries must act in the best interests of their patients or client, subordinating their self-interest. Fiduciaries are held to higher standards than business people, who use their knowledge and skill for their own self-interest, rather than for the benefit of their customers.
Ordinary business relationships are characterized by the phrase caveat emptor, “let the buyer beware,” not by trust and reliance. Some financial incentives challenge the fiduciary nature of the doctor–patient relationship, as Chapter 34 discusses.
The Nature of Professionalism
In professional codes of ethics, physicians promise to serve the best interests of patients. Literally, physicians “profess” to use their skills to heal and comfort the sick, encouraging patients to rely on them and promising to act in a fiduciary manner . In return for physicians acting for the good of their patients, society allows physicians to regulate themselves by, for example, selecting applicants for medical schools and postgraduate training, establishing standards for certification, and disciplining practitioners.
Professionalism is a core competency for students and residents and is regularly assessed during training. It may refer to several different things. First, it may be a set of core values that physicians should follow, such as primacy of patient welfare, respect for patient autonomy, and honesty . Second, professionalism may refer to attitudes, beliefs, and skills that foster these core values, such as the ability to solve challenges to these core values and a willingness to engage in reflection, deliberation, and discussions with peers .
Third, it may refer to observed behaviors, particularly in training settings. When faculty evaluate students’ professionalism, however, they do not agree with other, and their own evaluations are inconsistent across different cases. Furthermore, the same behavior (such as lying) might be considered professional by one faculty member and unprofessional by another . This inconsistency may result from the importance of context and motivation in judging people’s behaviors.
Finally, patterns of unprofessional actions may predict future undesirable behavior. Ratings during training that a student was irresponsible or had diminished capacity for self-improvement are significantly associated with a higher risk for subsequent disciplinary actions by state licensing boards . The relationship between professionalism and clinical ethics (as discussed in this book) merits clarification. As we use the term, ethics helps physicians specify values and principles, decide what to do when these are in conflict, and articulate persuasive reasons for their decisions and actions.
Problems with Best Interests
The idea that physicians should act in the best interests of patients is indisputable. In any given case, however, determining what actions are in the patient’s best interests might be controversial.
Disagreements over What is Best for a Patient
People may disagree over the goals of care or the assessment of the benefits and burdens of an intervention. In Case 4.1, the physicians’ goal is to increase the patient’s likelihood of survival; however, the patient’s goal is to avoid physical and mental decline. Furthermore, the physicians and patients may weigh the risks and benefits of surgery differently. Physicians tend to focus on the prospect of long-term survival, while Mrs. N. is more concerned about the short-term risks of surgery and her quality of life .
Quality of Life
The term quality of life is used in many ways. Factors that might be considered include the following:
- The symptoms of the illness and the side effects of treatment
- The patient’s functional ability to perform activities of daily life, such as walking, shopping, and preparing meals
- The patient’s subjective experiences of happiness, pleasure, pain, and suffering
- The patient’s independence, privacy, and dignity
Competent patients usually consider their quality of life, as well as the duration of life, when making health care decisions. In some situations, a patient with a serious illness may decide that his or her quality of life is so poor that interventions are unacceptably burdensome. The principle of respect for persons requires respecting judgments about quality of life made by patients who are competent and informed. More controversy exists if other persons are making the judgments.
Quality of Life Judgments by Others Might Be Problematic
Quality of life judgments by others often differ sharply from patient’s own assessment. Persons with chronic illness, such as coronary artery disease and chronic obstructive lung disease, rate their quality of life higher than do their physicians or other healthy persons . Similarly, elderly patients who have survived a hospitalization in the intensive care unit view their quality of life higher than their family members do. Such discrepancies are not surprising.
Many patients learn to cope with chronic illness over time, develop support systems, and continue to find substantial pleasure in life. Furthermore, quality of life might improve substantially if in-home assistance or adaptive devices are provided. In addition, assessments of quality of life made by others might be discriminatory if they are based on the patient’s economic value to society or social worth.
Some people reject all quality of life considerations because they will lead to discrimination against people with disabilities. Proponents of a “right to life” may believe that biologic life should be prolonged, regardless of prognosis or quality of life, a position often based on religious beliefs about the sacredness of life. However, it is disrespectful for people to impose their view of quality of life on a patient who does not agree. Moreover, interventions that may prolong life also have burdens that should be taken into account.
These disagreements illustrate how determinations of quality of life by others are problematic unless they are based on the patient’s own judgments.