Mike Schick, DO, MA, Ultrasound Fellow, UC Davis, Sacramento, CA
A regular “super user” of your ED, whom you have grown to know well, presents as he typically does. EMS drops him on a hallway stretcher, stating he is intoxicated — again. While he is generally mildly confused at baseline, you are actually surprised to find him clinically sober with a clear thought process. You assess him to be alert and oriented to person, place, and time, but his initial vital signs are concerning. He is febrile and tachycardic and complains of a chronic cough, epigastric pain, and a mild frontal headache. Before you can go any further in the evaluation, he refuses all other diagnostics and therapeutics and demands to leave.
This is a classic case of autonomy versus beneficence that highlights a number of important ethical issues we encounter on a daily basis in the ED: refusal of care, decisional capacity, informed consent, and surrogate decision makers. This patient is refusing all care; but can he make such a decision? Can we keep him from leaving, knowing that it is in his best interest to stay for further evaluation?
First, we must determine his decision-making capacity. To start, a person must be an adult; emancipated; or, if deemed incompetent by a court, have a legal representative (guardian) for important medical decisions.
Next, there are three components of decisional capacity that must be assessed:
1. the ability to understand the options,
2. the ability to understand the relevant consequences of the options, and
3. the ability to evaluate the costs and benefits of the consequences by relating them to a set of personal values and priorities.1
Too often, physicians relay a desired course of action and then determine that the patient is capable of making complex medical decisions because they are “alert and oriented to person, place, and time.” The third component stated above — the ability of the patient to relate consequences to a personal value set — is critical in determining the capacity for decision-making because it addresses “the why.” Why does the patient want to refuse care? Why does the patient desire to participate in such seemingly risky behavior? This aspect of decisional capacity is often ignored, but may be the most important part.
A nonsensical answer may trigger you to take patients’ autonomy away in order to apply necessary diagnostics or treatments because they cannot make decisions for themselves. In those situations, you are obligated to do what is in their best interests. If the answer makes logical sense and is aligned with their values and priorities, we are then obligated to respect their autonomy, even if we do not agree with their decision.
Decision-making capacity must be determined on a case-by-case basis. Just as circumstances change rapidly in the ED, so may the patient’s ability to make decisions. Therefore, when you initially assess decision-making capacity, it applies only to the particular concern in question, and is not extended to other junctions. You are not making a global judgment on a patient’s ability to make decisions.
In order to follow this stepwise process, we as physicians must appropriately disclose information and discuss the issues at hand, including the benefits and drawbacks of diagnostics and treatments (including non-treatment) so that the patient may be capable of making an informed decision. It is important to remember to be clear — many adults function at only a fourth-grade learning level, and so our speech must be simple and understandable. Additionally, the disclosure process ought to be tailored to the patient’s desire for information. Some patients want to be spared some, or all, of the details. In certain cultures, the patient may defer all conversations to a family member. Exceptions to informed consent do exist in cases of emergent care when a patient’s life or limb is at risk, including cases of suicidal ideation. However, anyone who has spent time in an ED can acknowledge that many, if not most, cases are non-emergent and allow time for informed consent.
If you determine the patient cannot make an important decision, effort should be made to find the closest living relative, partner, or legal guardian who may be familiar with the patient’s values and expectations regarding medical care. Although this is state- and hospital-specific, most institutions prioritize surrogate decision-makers in the following order:
1. Court-appointed guardian
2. Spouse (or perhaps domestic partner)
3. Adult child
4. Parent of patient
5. Adult sibling
6. Closest relative
7. Close friend
The last two are not set in stone, as it is often unclear if a cousin of the patient is better informed in the patient’s medical care goals than a friend. Without any identified surrogate for a person who has inadequate decisional capacity, emergent medical care should be rendered. For invasive procedures, often two physicians may attest that a patient has no decisional capacity and that they are attempting to pursue the course of action that is in the patient’s best interests. However, realistically there may not always be time for such processes in the ED.
One challenge regarding surrogate decision-makers is that two (or more) prospective surrogates may claim responsibility for the patient. If the patient is married, there is often no question about who will be assisting in making decisions. However, more complicated scenarios often arise. One common scenario is when a non-legal long-term domestic partner is present, and his or her preferences are at odds with those of a patient’s adult child or sibling. It is important to know your state’s statues, most of which prioritize blood and legal relatives. However, domestic partners or other family members — such as a cousin — may be functionally more involved in a patient’s life and better informed on medical care preferences than an adult child of a patient who lives half way around the world.
Ideally, all critical stakeholders should be identified and allowed to participate; however, if an ED case is fast-paced and rapidly changing, it may be more important to identify one key person to assist in decision-making. Long discussions and debate among conflicting stakeholders can often be impractical in the emergency department.
There will be times when we will not agree with surrogate decisions. It is important to do what is reasonable and allow surrogates to act out what they believe the patient’s wishes would be. However, in the setting of unreasonable requests or demands, physicians are not obligated to act. When a son wants “everything done” for his 102-year-old demented, bed-bound mother, it is ethically appropriate to do what we know will empirically benefit the patient. This may mean withholding invasive or “heroic” measures that may be less beneficial or detrimental. The most skilled clinicians will help guide the surrogate’s decisions without coercion, allowing both the surrogate’s and patient’s interests to prevail.