The third condition necessary for valid consent is that the patient has the capacity to make medical treatment decisions. Gert and colleagues have used the term “competence” as an abbreviated way of stating that the patient has the capacity to make medical decisions. In this clinical, nonlegal usage, “competence” signifies that the patient possesses the mental capacity to understand the relevant medical information, to appreciate the medical situation and the possible consequences of treatment decisions, and to manipulate this information rationally to reach a decision.²⁴ Other scholars shun “competence” because of its legal connotation and prefer the more cumbersome “capacity to make medical decisions.”

Bernard Lo identified the four components of clinical competence: (1) the patient appreciates that she has a choice; (2) the patient appreciates the medical situation and prognosis as well as the risks, benefits and consequences of available and recommended treatments,
(3) the patient’s decision is stable over time and is not impulsive; and (4) the patient’s decision is consistent with her personal values and health-care goals.²⁵

Obviously, competence is not an all-or-none capacity, and a person’s degree of competence may change over time, often over a very short time in hospitalized, seriously ill patients. Competence also is task specific; thus, a person may be competent to write a will but not to play the piano. I have examined hospitalized patients with dementia or delirium who were competent to name a surrogate decision maker for themselves but incompetent to understand medical facts sufficiently to validly consent to therapy. Depending on their ability to appreciate and process the information conveyed during the consent process, patients can be classified into one of three groups: competent, partially competent, and incompetent.

Fully competent patients can make rational judgments about medical decisions because they are able to understand and process all necessary information. Thus they are able to provide valid consent or refusal for therapy. Partially competent patients, such as those with mild delirium or dementia, may understand that the physician is requesting their consent for certain therapy, but they cannot fully comprehend the issues involved. They are capable of providing only simple consent²⁶ but not valid consent.²⁷ Surrogate decision makers must corroborate a simple consent to make it valid.

Patients rendered incompetent by coma, profound delirium, or dementia cannot understand even the most basic facts of their existence, such as that the clinician is requesting their consent. These patients are unable to provide even a simple consent. Under these circumstances, surrogate decision makers must be approached for all medical decisions.²⁸ There is evidence from a recent study that physicians managing elderly patients with delirium failed to adequately assess their cognitive status, failed to obtain their consent, and failed to use surrogate decision makers consistently.²⁹

In each clinical encounter, the physician should assess the competence of a patient to make a medical decision during the consent process. Many clinicians have observed, perhaps cynically, (as I also have observed in numerous clinical ethics consultations) that the competence of a patient becomes an issue in practice only when the patient disagrees with the physician’s treatment plan. If the patient concurs with the treatment plan, her cognitive capacities are not further scrutinized. The clinical determination of competence usually does not require formal testing but rather results from observations made during the clinical encounter. In cases in which competence is questioned, more formalized mental status testing is necessary. In the most difficult cases, psychiatric consultation may provide helpful advice.

Treatment of the patient with Alzheimer’s disease is another common setting in which competency questions arise in neurological practice. Alzheimer’s patients comprise a spectrum from the partially competent to the utterly incompetent. Patients in early stages often are competent to give consent for treatment and complete a valid advance directive for medical care.³⁰ Patients with moderate dementia can be tested reliably for their ability to make a clinical decision by using structured interviews³¹ or neuropsychological tests.³² The specific bedside determination of clinical competence in the Alzheimer patient has been the subject of several studies. Bedside instruments have been developed and validated specifically to assess competence in various clinical contexts for consent by the Alzheimer patient.³³

Neurologists often must determine decision-making capacity in patients with aphasia. Aphasic patients comprise a spectrum of severity and variability in language comprehension and expression.³⁴ Many aphasic patients retain adequate cognitive capacity but are unable to express their preferences for treatment or provide valid consent because of language dysfunction.³⁵ Clinicians should enlist the services of a speech-language pathologist trained in aphasia assessment to help determine the patient’s capacity to consent.³⁶

Unlike competency, which refers to the capacity to make a treatment decision, rationality refers to the characteristics of a treatment
decision once a patient has made it. Thus, competent patients can make both rational and irrational decisions.³⁷ The clinician who responds to a patient’s treatment decision must consider both the competency of the patient and the rationality of the decision. Physicians have an ethical duty to help their patients reach medical decisions through a rational decision-making process by providing necessary information, answering questions clearly, and addressing fears and concerns.

Gert and colleagues have stipulated that “to act irrationally is to act in a way that one knows (justifiably believes), or should know, will significantly increase the probability that oneself, or those one cares for, will suffer death, pain, disability, loss of freedom, or loss of pleasure; and one does not have an adequate reason for so acting.” A reason is “a conscious, rational belief that one’s action will help anyone, not merely oneself or those one cares about, avoid some of the harms or gain some good, namely, ability, freedom, or pleasure, and this belief is not seen to be inconsistent with one’s other beliefs by almost everyone with similar knowledge and intelligence.” Reasons may be adequate or inadequate. A reason is adequate only “if any significant group of otherwise rational people regard the harm avoided or benefit gained as at least as important as the harm suffered.” Actions that are not irrational are rational.³⁸

In general, when a patient follows a physician’s recommendation, she is acting rationally. This assertion is based on the assumption that physicians very seldom make irrational treatment suggestions to patients. But a patient who refuses a physician’s treatment recommendation is not necessarily acting irrationally. The patient’s decision becomes irrational only if the reasons behind her decision are inadequate and, as a result, would cause her to suffer unjustified and unnecessary harms that she could have avoided easily.

For example, an otherwise healthy young woman with depression may be competent, but her decision to refuse simple treatment may be irrational. She may understand her medical situation with perfect clarity, including that her depression may likely reverse with treatment. Yet the magnitude of her mental anguish is so great that she refuses food and all medical treatment. Her refusal in this circumstance is seriously irrational; hence, her physician is not ethically required to respect it. In this case, her physician can overrule her refusal, as outlined later in this chapter in the section on paternalism.

The law generally does not permit physicians to overrule their competent patients’ refusal of treatment merely on the basis of irrationality. In practice, when a patient’s refusal seems seriously irrational, the physician usually labels her as incompetent, which thereby permits the physician to overrule the patient’s treatment refusal. Although this practice confounds the distinct concepts of rationality and competence, it is a common solution that permits clinicians to overrule their patients’ decisions to refuse treatment when the refusals are seriously irrational.

The rationality of a particular decision may vary as a function of other medical circumstances. It would be seriously irrational for a young, otherwise healthy patient to refuse intravenous antibiotics that can easily cure her bacterial pneumonia in favor of an exercise and macrobiotic diet regimen to treat the pneumonia. The patient would likely suffer the serious evils of death or disability without adequate justification because the harms of treatment are so slight by comparison. However, the same decision made by a person of any age with widespread metastatic carcinoma in a terminal stage would count as a rational decision because the harms that the patient likely will suffer with or without antibiotic treatment are similar.

Brock and Wartman outlined the forms of irrational decisions commonly made by patients. Some patients have an irrational and childish bias toward the present and near future. They may be churlishly and unreasonably unwilling to undergo even a slight amount of pain or discomfort in the present to prevent much worse suffering in the future. Other patients may categorically deny the possibility of complications of a specific treatment, using the rationalization, “Oh, I know that won’t happen to me.” Like small children, other patients have an irrational fear of pain or medical experiences in general, causing them to delay, avoid,
or refuse much needed medical treatment.³⁹ Clinicians have a nonmaleficence-based ethical duty to help patients avoid irrational thinking in their decision making.

Refusal of medical therapy on religious grounds constitutes an interesting example of rational vs. irrational decision making. The well-known refusal of Jehovah’s Witnesses to receive blood or blood products (including their own previously banked blood), and their resulting willingness to die of an otherwise treatable condition to maintain this religious conviction, has been respected in American medicine for over a generation. The religious injunction against receiving blood or blood products has a biblical rationale and is a fundamental tenet of their religious belief system. While dying of an easily treatable medical condition may strike some as an irrational act, it would not be considered irrational using the definition of Gert and colleagues, because this belief is consistent and coherent with the Jehovah’s Witness patient’s other beliefs. Similar conclusions can be reached with the decisions of Christian Scientists to refuse medical treatment. Respect for these treatment refusals does not necessarily apply to their minor children, however, and physicians have successfully secured court orders enforcing life-saving treatment for children of Jehovah’s Witnesses and Christian Scientists.⁴⁰

Once a patient has made a treatment decision, the physician must respond to it. The physician’s response should take into account both the competence of the patient and the rationality of the decision. When a competent patient provides valid consent to a physician’s recommended treatment plan, the treatment is implemented because it is implicit (though not always true) that the physician’s recommendation is rational. A competent patient’s valid refusal should be similarly honored unless that refusal is seriously irrational. In a later section, I consider those rare instances of justified paternalism in which it may be morally defensible for a clinician to override a competent patient’s decision to refuse treatment and to proceed with treatment without consent. The rationality of a refusal of life-sustaining treatment may be difficult to determine, particularly in the patient with a psychiatric condition,⁴¹ and should be handled on a case-by-case basis as discussed in chapter 8.

With a partially competent patient, the physician should seek simple consent from the patient and make the consent valid by corroborating with a surrogate decision maker. The physician responds to simple consents made valid by corroboration in exactly the same way as he responds to valid consents from competent patients. With the incompetent patient, the surrogate must corroborate all consents necessary. Once the consent is corroborated, the physician responds as he would to any valid consent.

Physicians should understand patients’ cognitive and emotional reactions in the decision-making process. Not all ostensibly rational decision making operates by entirely rational processes. Redelmeier and colleagues have identified several psychological mechanisms patients may employ that influence their decisions in unsystematic and irrational ways. The effect of physician framing on patients’ decisions was discussed earlier. Some patients lack the mathematical capacity to appreciate quantitative estimates of risk and prefer to dichotomize risks erroneously as “all or none” or “dangerous or safe.” Most patients rank suffering a loss as a worse outcome than the failure to gain an equivalent quantity. Memories of emotional and traumatic past experiences affect the decision making of some people and account for their tendency to disproportionately weigh options that avoid those particular risks.⁴² All patients have biases of risk estimation that lead to less than fully rational decisions.⁴³ Physicians have the ethical duty to try to understand the psychology their patients use in making decisions. They also have the responsibility to guide their patients to think rationally by identifying the sources of irrational thought processes and helping patients overcome them.

Surveys have shown that in practice it is quite common for patients to defer decisions
entirely to their physicians, particularly as they grow older and sicker. They may utter such phrases as, “I’ll do whatever you think is best, doctor.”⁴⁴ There is nothing morally wrong with acceding to this attitude as long as it represents a patient’s valid choice. Indeed, it shows that physician beneficence is implicit in the patient-physician relationship. Sherlock has pointed out that physicians have a special moral duty in caring for the sick to guide them to make correct decisions because their illness may interfere with their ability to think clearly.⁴⁵ Similarly, Loewy argued that physicians need to assume the beneficent role of leading the patient to the right decision.⁴⁶ Some scholars have called the physician’s role “high-quality decision counseling.”⁴⁷ Ubel explained how physicians’ recommendations improved patients’ decision making by gently leading them to make the right decisions for themselves.⁴⁸ There is evidence that hospitalized patients show evidence of childlike judgment with impairment in rational thinking that requires careful physician guidance.⁴⁹ But clinicians should take care not to assume the role of complete decision maker too readily, and thereby disenfranchise patients who wish not to defer their right of self-determination.

Paternalism has a long and hallowed tradition in medical practice evolving from the fiduciary duty of a physician to identify and act in the best interest of the patient. Because the clinician alone possesses specialized knowledge and experience in diagnosing and treating illness, only he can define the proper course of diagnosis and treatment.⁵⁰ Old-time physicians traditionally are portrayed as making wise and prudent choices for patients who followed those decisions unquestionably and respectfully.

The current connotation of paternalism is clearly negative, conjuring an image of a physician arrogantly and egotistically proceeding with a course of treatment without the least consideration for the patient’s wishes. To further understand the explicit meaning of paternalism and to examine whether a physician’s paternalistic behavior may ever be justified, we need an explicit definition of paternalism.

Of the numerous scholars who have attempted to define paternalism, Gert and colleagues have achieved the greatest precision. According to their definition, A is acting paternalistically toward S if and only if: (1) A believes that his action benefits S; (2) A recognizes (or should recognize) that his action toward S is a kind of action that needs moral justification; (3) A does not believe that his action has S’s past, present, or immediately forthcoming consent; and 4) A regards S as believing he (S) can make his own decision on this matter.⁵¹

In neurological practice, an example of a paternalistic act that satisfies this definition is a physician’s purposeful withholding of information concerning the risks posed by a carotid endarterectomy, which the neurologist has recommended that the patient undergo to prevent future carotid territory strokes. The physician’s intent in withholding the information is to benefit the patient by protecting her from worrying unnecessarily about fearsome complications. The neurologist may rationalize that the patient clearly needs the operation, so why worry her further with information about the surgical risks? Withholding the risks involved in the procedure violates the moral rule, “Do not deceive” and therefore requires moral justification. The competent patient generally wants and needs to know and understand the risks of surgical procedures in order to provide valid consent. The deception is carried out without the patient’s consent, which she is capable of giving.

Paternalistic acts of medical decision making (unlike the previous example) are morally acceptable only when they can be adequately justified. Moral theories differ in their criteria for the justification of paternalism. Utilitarians simply would examine the consequences of the act to determine its morality. Deontologists would hold that because paternalism breaks a moral rule without the affected party’s consent, it never can be justified. Gert and colleagues conclude that common morality permits the occasional justification of paternalistic acts but
only when they satisfy the strict criteria for justifying the violation of a moral rule, as discussed in chapter 1.⁵²

In the circumstance of treating a patient who has refused treatment, Gert and colleagues provide four criteria for the justification of this paternalistic act: (1) the harms the treatment will probably avoid or ameliorate must be very great, for example, death or permanent disability; (2) the harms imposed by the treatment must be, by comparison, very much less; (3) the patient’s desire not to be treated must be seriously irrational; (4) rational persons must advocate publicly that the physician should force treatment in cases having the same morally relevant characteristics described by the first three criteria.⁵³

The following case is an example of justified paternalism. A previously healthy young woman develops acute appendicitis and appendiceal rupture. An experienced general surgeon in a hospital emergency room makes the diagnosis with a high degree of certainty. The patient refuses to consent to an emergency appendectomy, however, because she does not wish to have an abdominal scar that she regards as ugly. She truly wishes to recover but believes that antibiotics will be sufficient to cure her. The patient offers no religious objections or any reasons other than cosmetic concern for refusing consent. The surgeon’s compassionate explanations and reasoning do not alter the patient’s decision. Neither can family members convince the patient. The clinician knows that the patient will likely die or have serious complications if surgery is not performed quickly; therefore, he sedates the patient and performs an emergency appendectomy without her consent and despite her refusal.

I believe that paternalism in this case is justified. The evils of death or serious disability that surgical intervention alleviates are great and far exceed the evils of creating a small surgical scar and going against the patient’s will by treating without her consent. Her decision is clearly irrational given her otherwise excellent health and potentially long healthy life span. Rational persons would always want their lives saved if they could retain good health at a relatively tiny expense.