Revisiting Decision-Making Capacity

Currently, a patient’s right to self-determination is protected by the legal doctrine of informed consent, which comes with a very important caveat. As Justice Schroeder of the Kansas Supreme Court in the case of Natanson v. Kline (1960) (1) wrote: “Anglo-American law starts with the premise of thorough-going self-determination. It follows that each man is considered to be master of his own body, and he may, if he be of sound mind ….” This simply means that a person should have decision-making capacity in order to give informed consent. Hence, a thorough understanding of decision-making capacity is needed. Medical trainees of all levels are trusted with assessing decision-making capacity while obtaining informed consent, which is needed on three occasions: in treatment/procedure, when a patient refuses treatment/procedure, and when a patient decides on an alternate treatment/procedure. It is often believed that an experienced physician can assess decision-making capacity simply by following a gut feeling. However, when a physician encounters a case of questionable decision-making capacity, a focused assessment is necessary.

Assessment of Decision-Making Capacity

The first and foremost criterion for decision-making capacity is that a patient can make a decision and be able to convey it. Additionally, the patient should be able to acknowledge the problem and possible solutions. Decision-making capacity reflects functional abilities that a person needs to possess in order to make a specific decision (2). The patient should be able to provide a rationale for his or her decision. The patient can reject medical advice if he or she can understand the consequences and be able to express them. It is not wrong for physicians to persuade the patient toward an optimal treatment. However, coercion or deceptions should be avoided.

Case Example 1

“Mr. P” is a 58-year-old man recently diagnosed with prostate cancer. Urology had already recommended surgery. The patient wanted more options, which were given to him. He then had a conversation with radiation oncology but was still unsatisfied, and he requested an ethics consult. The patient refused to decide whether he wanted any treatment at all. He requested more information. In three subsequent meetings over the period of a month, more and more information was provided to him, but he still could not make a decision.

The patient in case 1 does not have decision-making capacity because a person who has such capacity should be able to communicate a decision when enough information is provided to them.

Many house staff only assess capacity when a patient’s decision differs from either their own or the generally accepted medical practice. Rarely does a physician say that a patient agrees with the medical recommendation and therefore a capacity assessment is needed. It is important to remember that determining decision-making capacity involves evaluating the process the person uses to make the decision, not whether the final decision is in accord with the team’s recommendation.

Case Example 2

“Martha” is a 52-year-old attractive woman who was just diagnosed with breast cancer. Surgery has the best chance of cure in her case, but she refuses surgery. When asked why, she responds that she wants to get into modeling and reports trying to break into the modeling industry for the last 20 years. She feels that now she has a real chance to make it and worries this can be affected by surgery.

Does the patient in case 2 have decision-making capacity?

Yes, this patient has decision-making capacity. She has a rationale for her decision, and though it may be far-fetched, she has an explanation.

Case Example 3

A 57-year-old HIV patient is admitted to the medical floor with what appears to be a bacterial infection. He refuses blood draws and blood cultures, as well as intravenous antibiotics, saying that he has fought HIV for the past 25 years and is tired of his quality of life. He does not want to be poked or prodded any longer. He says he knows there is a chance that he could die, but he prefers death, as he says he has lived a satisfactory life, and he prefers to die comfortably, even if the length of his life is reduced.

The resident physician tries to persuade the patient to agree to blood draws and intravenous antibiotics, explaining the need for these interventions and the chance of grave consequences if these interventions are not carried out.

The patient says he understands the consequences of not receiving treatment, says he knows he could die, and says he still does not want treatment. When the patient is asked why he decided to come to the hospital if he did not want any treatment, he replied, “to die peacefully.”

Patients have a right to refuse life-saving treatment if they are not affected by depression, mental illness, or any other treatable conditions affecting the decision, including uncontrolled pain. Refusing life-saving treatment does not affect their decision-making capacity.

Capacity vs. Competence

It is of paramount importance that the concept of decision-making capacity is differentiated from “competence,” as the terms are frequently used interchangeably. The complexity of the issue, with the aid of clinical examples, is explained in this article.

Decision-making capacity is decided by clinicians regarding a specific question, while competence is decided by a court and is implemented over a functional domain, such as finances or medical decisions. Decisions regarding competence are legal decisions, which take medical evaluations into account, and are binding for the duration specified in a court order.

The Varied Threshold for Assessment of Decision-Making Capacity

Decision-making capacity is assessed at three levels of complexity depending on the clinical situation and the patient’s acceptance or refusal of the treatment. Additional issues that must be considered when assessing decision-making capacity are the urgency of the situation and the risk versus the benefit involved. The sliding scale of competence, originally discussed by Dr. James Drane, describes differences in the threshold or “level of capacity needed” depending on the risks and the benefits. For example, a simple intervention with a low risk and high benefit (e.g., drawing blood to measure the hematocrit) may require only simple assent; however, a procedure with substantial risk and uncertain benefit requires great understanding on the patient’s part.

Decision-making capacity is not an all or none phenomenon. All of us can have decision-making capacity for some decisions but not for other decisions.

Case Example 4

“Mr. A,” a 62-year-old man with chronic alcoholism, is admitted after a fall. He underwent detoxification and was ready to go home when he was diagnosed with an aortic dissection. An ethics consultant determined that he did not have decision-making capacity to consent for surgery. Once recovered from surgery, the patient was ready to go home again. The case manager noted that the patient did not have decision-making capacity, hence he should be sent to a nursing home, where it would be safer for him. The same ethics consultant determined that that the patient did have decision-making capacity for the decision to go home.

Was the ethics consultant right the first time or the second time?

The consultant was right both times, as the assessment for questions of different magnitude will be of a different complexity. All patients have decision-making capacity until proven otherwise.

The Role of Psychiatrists

Mental illnesses may affect decision-making capacity, and in those patients, psychiatrists are best suited to assess capacity. They can be consulted in all other cases as well, at the discretion of the attending physician.

Case Example 5

A 49-year-old patient is receiving ECT on a regular basis, and the patient’s anesthesiologist requests an ethics consult because he feels uncomfortable continuing to assist in performing ECT due to the patient experiencing multiple episodes of arrhythmia during an anesthesia induction.

In this patient, a decision-making capacity assessment should be done by a psychiatrist, who will understand the need for ECT and the effect of ECT, as well as the effect of the underlying mental illness on capacity.

Conclusions

The patient has a right to refuse a capacity assessment by a consultant, and his or her refusal must be respected. Patients should not be compelled or coerced into agreeing to an assessment. In cases when patients refuse to be assessed for decision-making capacity by psychiatrists or ethics consultants, the responsibility will fall upon the primary physician.

The possession of capacity has been described as a gateway to the exercise of autonomy. On occasion, a patient may refuse an essential treatment as an autonomous choice. In our society, even in situations in which autonomy is in conflict with beneficence, liberty and freedom for the patient should be protected. Therefore, everyone has capacity until proven otherwise.

A status approach, the fact that a patient has an established psychiatric diagnosis, should not solely dictate the presence or absence of decision-making capacity. A focused assessment of these patients is necessary. The values and beliefs of the patient may not necessarily be shared by the clinician, but they should be consistent, stable, and affirmed by the patient, and this value system should serve as a sieve through which the criteria of decision making is filtered (3).

Key Points/Clinical Pearls