A 50-year-old woman comes into the emergency department (ED) with sudden, severe, dull/aching pain in her right shoulder for 1 hour. She denies prior pain, injury, arthritis, or neck pain. Further history and review of systems are unremarkable. She smokes. She appears to have moderate pain but an unremarkable physical examination. Her electrocardiogram (ECG) demonstrates an acute anterolateral myocardial infarction (MI). She has a normal chest X-ray and elevated troponin.
You explain that she needs an immediate cardiac catheterization. You hand her the consent form and offer to answer questions. She says, “No, I just want to leave.” You ask, “Do you understand how serious a heart attack is?” and leave, frustrated. Her nurse enters and talks with her, before summoning you into the room. “Ask her to sign the consent again.” The patient signs it. “What did you say to her?” you ask. “That she would die without the cath,” she says.
What do you do now?
Physicians must assess patients’ decision-making capacity to know whether to follow their directions about their medical care or to implement an advance directive or employ surrogate decision-makers. In doing this, emergency physicians (EPs) try to balance their respect for the patient’s self-determination with their concern for his or her well-being. Respect for patient self-determination is the basis of the moral and legal right to refuse or accept treatment, even life-saving treatment. Patient autonomy, as described by Justice Benjamin Cardozo, means “Every human being of adult years and sound mind has a right to determine what shall be done with his own body” [Schoendorff v. Society of New York Hosp., 105 N.E. 92, 93 (N.Y. 1914)]. However, only those with decisional capacity have this right. The right is further limited by the need to protect others from harm, such as not allowing patients with highly communicable diseases to refuse isolation or treatment.
The presumption for most adult patients is that they have decision-making capacity unless they are severely cognitively disabled, comatose, or have significantly altered mental status. Clinicians generally only question patients’ decision-making capacity when they refuse recommended medical interventions or otherwise make what is considered an abnormal decision. However, disagreeing with a clinician’s recommended healthcare interventions does not mean the patient lacks decision-making capacity, but may only signal a difference between the goals and values of the provider and those of the patient. It’s unclear how often clinicians proceed with intervention in patients that do not oppose them but lack decision-making capacity.
Decision-making capacity differs from competence, which is a legal term and generally determined by a court. If a court has deemed a person incompetent, they will appoint a guardian to make some or all the person’s decisions.
For their patients, EPs must quickly make the determination of decision-making capacity. Unless it is the institution’s policy, psychiatrists or other specialist generally do not accept this task. While a lack of capacity is obvious in the unconscious or delirious patient, it often is less apparent when the patient remains verbal and at least somewhat coherent. Due to the time-sensitive nature of many emergency medicine (EM) interventions, consultation, such as from the institutional bioethics committee, may be unavailable.
When doing these evaluations, EPs must recognize conditions that do not automatically preclude decision-making capacity. These include advanced age; intoxication from medications, drugs, or alcohol; neurological deficits; diminished cognitive capabilities; and communication problems (language or speech). Decision-making capacity can wax and wane, depending on the patient’s condition. Sometimes, medical interventions, such as administering antidotes, providing oxygen, or relieving acute pain can improve the patient’s decision-making capacity. Many clinicians mistakenly equate a mental status exam (orientation, memory, attention, and reasoning ability) with decisional capacity; that is not accurate. Those with a normal mental status exam do not necessarily have decisional capacity for the healthcare decision in question. Likewise, patients with an abnormal mental status may, on occasion, be found decisional, depending on assessing the elements that follow.
To assess patients’ decision-making capacity, the EP must discover whether they (1) understand the healthcare options as presented to them, (2) understand the risks and benefits of each of those options, and (3) choose an option consistent with their stable value system. Asking patients why they selected an option can elicit information about their choice’s relation to their value system. While this process may slightly extend the consent process, it is valuable for the patient to be able to clarify available choices and for clinicians to gain patient trust and provide true informed consent.
Decision-making capacity is decision relative. Decisional capacity relates to both the complexity of the decision and the probability of harm to the patient. A patient may have the capacity to make some decisions that are relatively simple, and the risks are minimal. The same patient may lack the capacity to make other decisions that require processing complex information and where a bad decision carries great risk. We recognize that easily when dealing with children. For example, while a 5-year-old may have the capacity to choose food options from a menu, it’s doubtful that she has the capacity to drive a car. Higher standards are employed for decisions with greater complexity (e.g., decision about how to proceed with diagnosing a possible pulmonary embolus) and more serious/irreversible outcomes (e.g., whether to have a cardiac catheterization for an acute myocardial infarction [AMI]).
Having the capacity to make a specific decision involves more than simply stating a preference for or against a treatment option. Rather, capacity means that the patient must articulate a knowledge of the options available (as described by the clinician), an awareness of the risks and benefits (as they see them) of the options, and how their value system led them to make the choice they made. The first two of these are a standard part of the informed consent process, asking the patient to explain what they were told. Without this knowledge, there is no informed consent. The last element, why they made the decision they did, is the crux of the process. It provides insight into the patient’s thought process and may indicate a need for further clarification or that the decision is outside his or her normal value system. Note that some religious objections to standard treatment (not accepting blood products, e.g.) may reasonably fall within a person’s normal value system. However, using this process allows the clinician an opportunity to clarify possible adverse outcomes for the patient.
It’s now obvious that determining decision-making capacity in a situation that poses significant risk to the patient may be difficult. As Buchanan (1995, p. 63) wrote,
How high we set the threshold of competence here . . . depends upon how we balance competing considerations. How willing are we to allow some individuals to suffer avoidable harm in an attempt to respect their rights of self-determination? How willing are we to allow some individuals to suffer avoidable harm to prevent others from having defective choices made for them? Although there is no magic formula for setting the threshold of competence for a particular type of decision, it is possible to identify the most important factors that should be taken into account for such a determination. Perhaps the most important of these are the probability and the magnitude of harm occurring as a result of respecting the patient’s choice.
In this patient’s case, we start over by asking the patient about what options for treatment she has. If she doesn’t know them, explain them (again). Describe the risks and benefits, although it’s best not to use the “you’re going to die” card unless it is certain. Ask her to describe them back in her own words. Then ask if she wants to proceed with the catheterization, as she previously suggested. If so, ask why. You may also want to ask why she initially refused. That may raise other concerns that can be addressed.
Key Points to Remember
• Decision-making capacity (rather than “competence,” a legal term) is the ability to make decisions about one’s own medical care.
• Having decision-making capacity rests on the patients understanding of their healthcare options and choosing an option consistent with their stable value system.
• Capacity is decision relative, meaning that the criteria to have decisional capacity depend on the complexity of the decision and the seriousness of possible outcomes.
• Individuals can have fluctuating decision-making capacity.
Buchanan AE. The question of competence. In: Iserson KV, Sanders AB, Mathieu DR (eds.), Ethics in Emergency Medicine, 2nd edition. Tucson, AZ: Galen Press; 1995:63–67.Find this resource:
Iserson KV. Principles of medical ethics. In: Marco C, Schears R (eds.), Ethical Dilemmas in Emergency Medicine. New York: Cambridge University Press; 2015:1–17.Find this resource:
Iserson KV, Heine C. Bioethics. In: Walls RM, Hockberger RS, Gausche-Hill M, et al. (eds.), Rosen’s Emergency Medicine: Concepts and Clinical Practice, 9th edition. Philadelphia: Mosby; 2017: Chapter 10e.Find this resource: