I have a 68-year-old patient with a history of coronary artery disease, myocardial infarction, chronic heart failure, and type 2 diabetes. He has an ejection fraction of 27 percent; fortunately, he only has New York Heart Association class II heart failure. A cardiologist advised him to consider an implantable defibrillator. I reviewed the literature and agreed with the cardiologist that, according to the evidence, the defibrillator is likely to improve the patient’s overall and cardiac-specific mortality. The patient is hesitant, however. He is interested in living a long life, but, despite assurances that the procedure is safe, he is convinced that he will have a bad outcome. He has received a number of risky and invasive medical interventions and has expressed a strong preference for avoiding medical procedures unless they are absolutely necessary. Another factor might be that the patient has significant vision loss from diabetes and feels depressed and not in control of his health.
What should physicians do if a patient makes a treatment decision that seems irrational or based on misperceptions? How can physicians help ensure that patients do not decline procedures that have proven benefits and little risk (e.g., mammograms, implantable defibrillators)?
American society values autonomy and the belief that competent adults have the right to make virtually any decision pertaining to their health care.1 As health care professionals, we have a responsibility to try to make sure that our patients are mentally capable, well-informed, and free of coercion. Patients are not always able to fully understand the medical aspects and implications of their choices. They have a right to expect us to give them our opinion, but they certainly do not have to agree.2 Although our advice should be based on an understanding of the patient’s values and preferences, our ability to understand these preferences is probably no greater than the patient’s ability to understand the medical issues.3 What often results is a kind of responsible paternalism.4–6
Although we have in mind what we think is best for the patient, we do not, and quite possibly cannot, present the information in a complete and unbiased way. Our patients, no doubt, understand and expect this and take it into account when interpreting our advice. In the scenario, the patient disagrees with the physician’s advice. The physician does not understand why and is frustrated, wondering if he has explained the facts well enough or if his patient is making his decision based on his failing vision or other factors that he has not revealed (e.g., the financial cost, potential caregiver burden).
A person’s ability to make good decisions often can be difficult to determine with precision.7,8 There is no simple test that can be used, and no one is capable of making every kind of decision. The goal is to determine the patient’s ability to make a specific decision that is in his or her best interest. Lower levels of certainty are acceptable when a bad decision creates fewer adverse consequences.9 Decisional capacity includes the ability to understand that a decision must be made and why, and to understand the pros and cons associated with the available alternatives. It also involves the ability to make a decision that is consistent with previously stated or demonstrated values. Therefore, decisional capacity requires an ability to understand the situation, appreciate the risks and benefits of the available options, use reasoning to arrive at a sound decision, and communicate the decision to others.10,11 These capabilities can be assessed during a carefully structured conversation with the patient about the decision in question.10,12,13
We have no information about the cognitive abilities of the patient described in the scenario. Although the prevalence of cognitive impairment in persons 68 years of age is only about 5 percent, we know that mild to moderate cognitive impairment goes unrecognized in about 60 percent of patients in inpatient and primary care settings.14,15 Even family members fail to recognize cognitive impairment up to 50 percent of the time.16,17 The scenario states that the patient has experienced numerous medical procedures and seems to be basing his decision, in part, on those experiences. Although the desire to avoid “medical procedures unless they are absolutely necessary” makes a certain kind of sense, one would want to know when and why he changed his mind, having agreed to such procedures in the past.
The possibility of depression often clouds the picture, as in this case. Although severe depression certainly can impair one’s ability to concentrate, there is little evidence that depression significantly impairs decision-making ability after patients have been adequately educated about their options.18,19 A less-studied problem, societal ageism, has caused reduced expectations and lowered confidence and self-esteem among older persons. In our youth- and production-oriented society, postretirement can be a difficult time, particularly for men. This patient may believe that he is no longer of any value to anyone, and that his family might, in some ways, be better off if he was dead. This possible belief should be addressed during a discussion of the decision to be made, and efforts should be made to explore its source and validity.
One of the problems we face when trying to inform patients about the value of an intervention is the estimation of its benefits and risks. Clinical trials usually report relative risk reductions or numbers needed to treat, neither of which is particularly relevant to an individual patient. In the scenario, we may know that an implantable defibrillator will, on average, reduce the probability of cardiac events and death in persons with similar medical problems by a certain percent per year. However, we would have to know this individual patient’s current risk to calculate the absolute reduction in risk that he could expect. It is not always easy to obtain this kind of information from the medical literature. If the device reduced sudden cardiac deaths by 25 percent, but the person’s current risk was only 4 percent per year, the actual reduction in risk would only be 1 percent per year—a risk many might be willing to take to avoid an invasive procedure and a permanently implanted device.20 Another relevant but hard-to-find measure of effectiveness is the estimated gain in life expectancy or, better yet, in quality-adjusted life expectancy.
In this case, we are given very little information about the patient. Even if we knew more (e.g., his marital status, educational attainment, income, religion, functional status), we could not accurately predict his preferences regarding life-extending interventions.21 Nonetheless, getting to know the patient’s history in detail might uncover values that would help clarify his reluctance. He was probably too young to serve in World War II or Korea and too old to be drafted to go to Vietnam. Although his parents grew up without antibiotics and subspecialists, by the time he was in his teens, these aspects of medical care were reasonably widespread. The polio epidemic hit while he was in high school, and by the time he was 21, a vaccine had been developed. So, although his parents learned to live without modern medical interventions, he grew up in a time of medical miracles. His reluctance to accept a defibrillator might be based in some small part on a cohort-induced impression that medical interventions are unnecessary or overutilized.
We must not forget that with age usually comes wisdom. Wisdom can be defined as being able to see things in a greater variety of ways, resulting in a broader and deeper perspective. Physicians who are younger than their patients should keep this in mind.
Ultimately, the physician in the scenario should have an open discussion with the patient to more fully assess his ability to make an informed choice. If the physician determines that the patient is capable of making the decision, the physician should make sure that the patient indeed understands the risks and benefits of the procedure. The discussion also can help the physician understand other factors that may be swaying the patient’s decision (e.g., patient religion, income, marital status, education). The physician should recognize that his patient might not agree with his advice based on the patient’s life experiences, values, and beliefs. Even if the physician does not agree with the patient’s decisions, he should respect them and assume that they may, in fact, be correct.