Autonomy & Clinical Decision-Making: Three Approaches to Complex Cases

Decision-making plays a critical role in patient care, impacting everything from patient outcomes to providers experiencing moral injury or distress. In healthcare, clinical decision-making can fall into the extremes of paternalistic (principally led by the physician or other providers) or autonomous (exclusively led by the patient). The pendulum can swing between these two approaches, resulting in poor patient outcomes and conflicts between providers and patients/families. However, one approach does not fit all situations. There are different models in patient-centric decision-making, which are based on the patient’s ability to receive, understand, and respond to options. These include substituted judgment decision-making, patient-controlled decision-making, and supported decision-making.

This article explores autonomous decision-making by looking at the benefits and limitations of these three models.

Decision-Making and Moral Congruency

Moral congruency refers to the alignment of consistency between an individual’s moral beliefs, values, and principles with their actions and behaviors. Both patients and providers make healthcare decisions based on their own sense of self-interest, values, or rules.

Below is an example of how these decision-making factors can influence choice – using the familiar scenario of deciding whether to wear a mask:

• Interest-based decision-making could either lead people to conclude that they should not wear a mask because it is a nuisance or that they should wear one because it could prevent them from getting an airborne infection.
• Value-based decision-making could lead to the conclusion that masking should not be a requirement because of a person’s right to self-determination about their body or that it should be a requirement based on social justice principles that emphasize protecting others.
• Rules-based decision-making would depend on the rules in place and determining if those rules should be followed.

Similar processes can occur in medical decision-making. Patients and their surrogates frequently must make difficult decisions on conditions they do not fully understand or they have core fundamental disagreements with. It is important to understand the patient’s values as they relate to a specific issue, discuss what’s in their best medical interest, and explain any rules or laws surrounding the decision.

Biomedical Ethics

When moral incongruency occurs, practitioners can frame the ethical conflicts utilizing bioethics principles (The Principles of Biomedical Ethics by Tom L. Beauchamp and James F. Childress) and can break larger ethics concepts down into discernable pieces. The four principles of bioethics are:

• Autonomy (an individual’s rights to make their own decisions).
• Beneficence (acting in a manner that provides benefit to the patient).
• Non-maleficence (acting in a manner that minimizes harm to the patient).
• Justice (fairness and equality in the access and application of medical treatment).

All four principles are equal in importance, and ethical conflicts arise when two or more of these are in conflict. When such a conflict occurs, it is important to consider consultation with a bioethicist or an ethics committee.

Three Models in Patient-Centric Decision-Making

1. Patient-Controlled Decision-Making

This is the most common approach. In patient-controlled decision-making, patients retain authority over their bodies and their healthcare decisions. This requires conversations (informed consent) to fully inform patients of the risks and benefits, transparency to potential conflicts of interest, and the chance for patients to ask questions. Their interests and values are paramount in this decision-making process, which will impact the option the patient sees as preferable. When evaluating a patient-controlled approach, recognize that risks and benefits are not opposites because risk is relative to the patient.

However, patients often do not understand treatment plans well enough to make decisions – this even occurs when physicians believe their patients understand (Berger, et al). As a result, when patients assert opinions regarding treatment contrary to the provider’s recommendations, ethical conflict can ensue.

2. Substituted Judgment or Best Interest

Substituted judgment and best-interest decision-making involves a surrogate decision-maker. Substituted judgment is when a patient does not have capacity for decision-making, but a directive of care exists (e.g., advanced directive, do not resuscitate, etc.), and the surrogate makes healthcare decisions in accordance with these directives. Best-interest decision-making occurs when the patient does not have the capacity to make decisions and there is no directive of care. In this case, the surrogate decision-maker would make decisions they believe align with patient’s values and would have been the choice the patient would have made if they had capacity. However, as David Wendler explains, surrogates may act in a way that does not align with the patient’s core interests or that is not in the patient’s interests at all.

3. Supported Decision-Making

Shared decision-making promotes family and clinician collaboration, according to Adams and Levy. Beers et al explain that shared decision-making allows patients and their families to make decisions after receiving comprehensive information. For this interdisciplinary approach to succeed, the following steps are necessary:

• Inform the patient and family that they need to make important decisions.
• Provide information objectively with reasonable options.
• Discuss preferences and goals.
• Allow a reasonable time frame for consideration.
• Jointly develop a plan.
• Execute the plan.

There are two distinct approaches to supported decision-making:
1. The comparativist model focuses on rationality that aligns with the patient’s values. According to Anders Herlitz, this model “argues that a plausible justification and ground for person-centered care and shared decision making is preservation of rationality in the face of comparative non-determinacy in clinical settings.”
2. In the mental prosthesis model, Silvers and Francis explain that the surrogate’s opinion of what is good is irrelevant – only the patient’s perspective deserves consideration.

Case Study

The following case study shows how these approaches can play out in a real-life situation.

Joanne was 56 years old and had been living at a nursing home for nine months. She had a stroke that resulted in left-sided hemiplegia, swallowing difficulties, incontinence, recurrent urinary tract infections, and a stage 3 pressure injury to her coccyx. She was dependent on nursing assistance. However, she was alert and able to participate in her decision-making and give consent.

Joanne had been with her wife Susan for 12 years. Susan visited daily and was actively involved with Joanne’s care. Joanne and Susan wanted Joanne to return home, and Joanne informed the physician of this. The physician’s initial response was to immediately deny the request on the grounds that Joanne’s care was too complex for Susan to provide.

After a review of the case, it was determined that Joanne and Susan had limited financial resources and could not afford even partial home care. Furthermore, Susan had no basic training in providing healthcare and controlling infection. They lived in a small wood cabin that did not have space for the required equipment. However, since they both insisted on leaving immediately, the physician requested an Ethics Committee consultation.

When applying the situation to the three models, we find:

• Substituted judgment decision-making: Substituted judgment was not required because the patient was capable of decision-making.
• Patient-controlled decision-making: The patient had the mental capacity to make decisions and was able to clearly articulate her decisions. However, there was a conflict between the patient’s desire and the treatment the physician considered beneficial. The Ethics Committee, therefore, needed to determine whether the patient truly understood the risks involved and whether she had been presented with all of the options to make a decision. If she did, then an unsafe discharge would have occurred.
• Supported decision-making: Since the patient was her own decision-maker, the comparative approach to supported decision-making applies. After multiple sessions with the Ethics Committee, the couple’s desires, fears, and perspectives were understood. Susan agreed to take classes to become a certified nursing assistant, and the house was renovated to make room for the required equipment. After the training and a home inspection, the patient was discharged with a plan and safety awareness.

In this case study, the patient’s initial desire could have resulted in poor outcomes. However, through a series of conversations designed to better understand the patient’s goals and discuss what was necessary to achieve those goals, a suitable option was found.

The Push Toward Supported Decision-Making

Current trends favor supported decision-making. This can be especially important for maintaining patient autonomy when a patient has intellectual disabilities or neurological impairments. Both the comparativist and mental prosthesis models can lessen the burden experienced by the patient and family while lessening moral injury for providers. However, genuine collaboration, trust, and transparency are necessary, and it is important to set clear boundaries and guidelines.

This article is based in part on a Coverys presentation “Autonomy and Clinical Decision-Making: Three Approaches to Complex Cases” by Josh Hyatt, DHS, MBE, MHL, DFASHRM, CPHRM, CPPS, HEC-C.