Ethics in Practice: Capacity and Surgical Decision-Making

Daniel Kraft, MD, and Antoinette Esce, MD, on behalf of the Ethics Committee

Each person has a right to self-determination, which includes decisions they make about their medical care. This underpins the core bioethical principle of autonomy that forms the basis for many of our cultural and professional norms about informed consent and surgical decision-making. However, circumstances or illness can prevent us from being able to exercise our right to self-determination, and other core bioethics principles such as beneficence and nonmaleficence require clinicians to identify situations when a patient may lack the capacity to make medical decisions. Capacity assessment is the careful process clinicians undertake to determine whether or not a patient's right to self-determination should be overruled.¹ Otolaryngologists should be familiar with the basics of capacity assessment since the process of informed consent is dependent upon the patient's medical decision-making capacity.

Capacity as a Prerequisite for Informed Consent

Traditional models of informed consent require a voluntary patient with capacity, disclosure about the risks, benefits, indications, and alternatives by the clinician, which should be understood by the patient to inform their decision.² Many clinicians participate in a more nuanced process of shared decision-making, supported by professional and ethical norms, but capacity is a prerequisite for either model.³ Despite its primacy, capacity is often difficult to assess at the start of the conversation without some discussion. Common situations that call a patient's capacity into question are refusing medical recommendations, concern for severe psychiatric illness, or an inability to understand the presented information. All of these tend to reveal themselves after a conversation about informed consent for surgery has already begun.

The Four Components of Decision-Making Capacity

When a question regarding a patient's capacity arises, the clinician's instinct is often to engage psychiatry to provide an assessment and a definitive answer. The reality is that all physicians engage in capacity assessments throughout routine clinical care and should be competent in the fundamentals of practice.⁴ Simply put, a patient with capacity must be able to:

1. communicate a choice
2. understand the relevant information at a level appropriate for their health literacy
3. appreciate the situation and its consequences
4. reason through their choice in a rational way

If in the process of assessing a patient, the clinician suspects a psychiatric illness may be affecting their capacity, a psychiatric consultation would be more than appropriate.⁵

Capacity vs. Competence: Understanding the Distinction

Capacity is a time and situation dependent attribute that differs from legal competence. Competence is often a global determination made by a judge or a court and typically pertains to finances and other legal matters but can include medical decision-making as well.⁵ Capacity is a determination made by a clinician for a specific medical decision at a specific time. Capacity can wax and wane or be sufficient for some decisions, but not others. A patient with dementia, for example, may lack the capacity to refuse hospitalization and treatment for pneumonia but may retain capacity to refuse simple blood draws. In this way, the required capacity for a decision is proportionate to the magnitude of the decision at hand.

Sample Case and Discussion: Surgical Decision-Making for Symptomatic Multinodular Goiter

Case Presentation
Case: A 76-year-old woman with a past medical history of hypothyroidism presents to an ENT clinic complaining of one year of dysphagia, inability to sleep lying flat, and aesthetic concerns related to her large 7cm multinodular goiter. On exam, she appears nervous and repeats the last several words of each of the physician's statements. On head and neck exam, the patient has a large palpable multinodular goiter. Fiberoptic laryngoscopy reveals a deviated trachea but a patent airway and bilateral vocal cord mobility. Images from an outside thyroid ultrasound reveal a bilateral multinodular goiter with two dominant 3cm right-sided nodules with calcifications. The surgeon recommends performing a fine needle aspiration (FNA) of the dominant nodules first.

Does the patient have the capacity to consent to an FNA? How would the surgeon decide?

Assessing Capacity for Low-Risk Procedures

Routine capacity assessments are often informal and appropriately mirror the nature of the discussion. An FNA is a simple procedure with very low risks and therefore a low threshold for decision-making capacity is required to consent for one. It is also done with the patient awake, which allows them to express concerns about the procedure or their understanding throughout the process. As long as the patient can communicate a choice and seems to understand the information presented to her, we likely are not going to question her much further. This importantly reflects our presumption that patients have capacity until proven otherwise.

It also demonstrates the routine ways we incorporate small assessments of capacity into our conversational habits. The surgeon likely explained the reason for the FNA (thyroid nodules), the risks of the FNA (pain, bleeding), and the benefits of the FNA (diagnosis). They may have asked the patient to describe their choice and reasoning in their own words to check understanding, given that the patient seemed nervous and had been repeating some of the surgeon's statements. Most of us merely ask, "Do you have any questions?" For simple low-risk procedures on awake patients, this may be sufficient, but we should be aware that this alone does not confirm understanding. Many patients who are confused, overwhelmed, or lack capacity will often nod along and avoid making things difficult.

In this case, the patient was asked to confirm her understanding, and answered, "Yes I understand—you need to take a piece of the gland to see if there is cancer. I get that it might hurt and could bleed, but I want to know what is in there." She was clearly able to communicate, understand, appreciate, and decide.

The Challenge of More Complex Surgical Decisions

The patient returns to the clinic in a week to review the results of the FNA, which is benign. The patient would still like the surgeon to remove her thyroid gland, stating it is uncomfortable and stops her from sleeping well. The surgeon begins filling out a consent form with the patient. When discussing the risk of vocal cord paralysis, the patient states, "My voice is fine, don't worry about that." The surgeon reiterates that the nerve that controls the voice is near the thyroid gland. The patient states that her voice is fine and that she wants her thyroid gland removed, not any nerves.

Does the patient have the capacity to consent to a thyroidectomy? How would the surgeon decide?

An elective thyroidectomy for benign goiter in an elderly patient requires a nuanced discussion of risks, benefits, and alternatives. In this case, the patient clearly understands the problem (her thyroid gland) and the potential benefits of the surgery (improved symptoms) and is also able to communicate about her choice (remove the thyroid gland). However, the surgeon is understandably concerned that the patient does not have an understanding or appreciation of the risks of surgery and therefore may not be properly weighing them against the benefits in order to inform her choice. This could be because the patient lacks the capacity to make this decision or because she needs additional counseling about the risks and the decision at a more appropriate level.

Maximizing Patient Capacity Through Clear Communication

It is incumbent upon the surgeon to ensure their patients understand the risks and benefits of a proposed treatment and also to maximize their capacity to do so. For example, it may be necessary to delay treatment until a patient is no longer intoxicated and able to consent, to use plain language at the patient's health literacy level, or to delay further discussions and decision making until emotions from a new cancer diagnosis have been addressed. In this patient's case, they just may need clearer framing from the surgeon.

When we feel that a patient is "not getting it," our urge is often to quiz them on details of the conversation. Although this may confirm that they misunderstand something, it doesn't always move us closer to understanding. In this case, the surgeon may want to take a step back and reframe the discussion for the patient: "I can understand that you want the surgery so you can sleep better. While I hope that the surgery can help with that, it might not make you feel any better, and there's a chance it can make you feel worse. We have to decide together if the risks of the surgery are worth it, and I want to make sure you understand what could happen."

When Capacity Is Compromised: Involving Surrogates

In this case, the patient grows upset with the surgeon and reiterates, "I just want you to take out my thyroid, not make things worse!" The surgeon is convinced that the patient does not have the capacity to make this decision since she cannot appreciate the risks of the procedure or explain how they factor into her decision. The surgeon schedules a follow-up appointment with the patient and her adult daughter, who is her surrogate decision-maker, to discuss the situation further.

The Prevalence of Capacity Issues in Geriatric Patients

Problems with capacity are fairly common in geriatric patients. In a study of patients >60 years of age undergoing major orthopedic surgery, many displayed significant cognitive impairment and pain, both of which affect capacity. When evaluated with a validated capacity assessment tool, fewer than 50% of patients were "definitely capable" of making an informed decision regarding surgery, and nearly 25% were "definitely incapable" of making the decision.⁶ These data suggest that many patients may have reduced capacity that goes unrecognized, especially in the setting of their disease symptomatology and underlying age/conditions. When patients do not have capacity, we must instead rely on their surrogates to help us make decisions on the patient's behalf.

Conclusion: Balancing Autonomy and Protection

Otolaryngologists routinely perform capacity assessments in clinical care whether we recognize it or not. Fundamentally, to have capacity, a patient must demonstrate an understanding of their condition and the proposed treatment, must articulate how these facts affect their life, must be capable of communicating a choice, and must demonstrate a reason for why they have made their choice.

A patient may have the capacity to decide regarding one intervention (e.g., an FNA) but lack capacity for a separate decision (e.g., thyroidectomy). We should also remember that a patient's capacity is based on a global assessment of the patient at the time of the decision. As surgeons, we have a responsibility to maximize our patients' capacity for decision-making and recognize when they are unable to make decisions for themselves, especially with high-risk interventions or those under anesthesia when patients cannot express misunderstanding of the procedure. Understanding the components of capacity helps us to more intentionally evaluate our patient's decision-making capacity while still respecting their presumed right to self-determination.

References

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3. Kirby MD. Informed consent: what does it mean? Journal of medical ethics. 1983;9(2):69-75.
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6. Mandarelli G, Parmigiani G, Carabellese F, et al. Decisional capacity to consent to treatment and anaesthesia in patients over the age of 60 undergoing major orthopaedic surgery. Medicine, Science and the Law. 2019;59(4):247-254.