Ethics in Practice: Autonomy and Shared Decision-Making

Jennifer Ren, BA, and Antoinette Esce, MD, on behalf of the Ethics Committee

Fundamentals of Autonomy and Shared Decision-Making

Autonomy is one of the four core medical ethical principles, alongside beneficence, nonmaleficence, and justice. It is frequently applied in clinical practice through obtaining informed consent, allowing patients to refuse treatment, and promoting shared decision-making. Shared decision-making involves active participation by both the patient and physician to jointly reach a healthcare decision. Autonomy exists as a balance between two extremes: paternalism, in which the physician decides for the patient, and independence, when patients are expected to interpret all the medical information themselves and choose from a range of treatment options.

The latter extreme often masquerades as the optimal strategy to promote autonomy. The patient makes the decision, presumably “according to their own reasons and motivations.”¹ Therefore, it may seem logical for clinicians to present neutrality to avoid coercion and maintain patient autonomy by saying, “My job is to give you all the information and make sure you understand the risks and benefits.”  When a patient chooses contrary to prevailing medical information, it may be interpreted as an act of autonomy, rationalized as “their decision.” However, such a choice could be interpreted as a fundamental miscommunication between the patient and surgeon about the treatment goals and downsides or about the patient’s values and reasoning.

If patients had the same medical knowledge as a clinician and made their choice with that understanding, they could perhaps make truly autonomous decisions. Yet, it is impossible to convey the requisite information and experience during a clinic visit. A clinical recommendation is often the most effective starting point for shared decision-making and can serve as a framework to highlight the goals and downsides of the intervention.² When surgeons act neutral despite strong evidence and knowledge regarding preferable treatment options, they transfer the responsibility of the decision to the patient or family rather than engaging in deliberation.

Sometimes, there are two equally effective treatment options, and surgeons don’t have a strong opinion. For example, thyroid lobectomy and active surveillance are often both appropriate management strategies for certain low-risk thyroid cancers. Patient autonomy is critically important in situations when there is uncertainty about the preferred treatment of a condition to achieve a particular outcome. This may seem relatively rare or limited to oncologic management discussions where the stakes are high, but otolaryngologists frequently encounter this type of situation. Decisions about quality of life and elective surgery are often even more preference-sensitive than life-or-death oncologic cases—and similar strategies around shared decision-making can enhance patient autonomy in both cases. Here, we present a familiar scenario to illustrate how shared decision-making can take place in everyday visits.

Sample Case and Discussion: Treatment for Chronic Rhinosinusitis with Nasal Polyps

Case: A 58-year-old woman with a past medical history of Graves’ disease (status post-total thyroidectomy) presents to an ENT clinic complaining of four months of nasal congestion, nasal purulence, and hyposmia. On fiberoptic nasal endoscopy, nasal polyps are present bilaterally. A diagnosis of chronic rhinosinusitis with nasal polyps (CRSwNP) is made. The patient is prescribed corticosteroid nasal sprays and saline nasal rinses. After three months, she returns to the clinic for follow-up and reports no improvement in her symptoms. The recommended next step in treatment escalation is functional endoscopic sinus surgery (FESS), which the surgeon begins to explain. However, she expresses hesitation about pursuing surgery, shaking her head “no” during the technical explanation of the surgery.

Here, the surgeon may wonder about their next step in management:

“Should I respect the patient’s choice and schedule a follow-up even though she seems miserable? Should I suggest a biologic even though she doesn't really meet the criteria? Or should I re-emphasize surgery? I want to help her, but I don't want to choose for her."

The advent of new biologic treatment options for CRSwNP, such as dupilumab, is exciting for managing this chronic inflammatory condition, especially in patients for whom surgery is not an option, who have recurrent disease, or who have comorbid conditions that could be concurrently managed.³ This additional option heightens the importance of shared decision-making because each modality has varying tradeoffs.⁴

In addition to following the latest clinical practice guidelines, clinicians must weigh a wide range of factors when making clinical recommendations. Such considerations may include a patient’s particular symptom burden, the impact of treatment cost on the patient, an honest assessment of a patient’s ability to adhere to a treatment plan, and a patient’s goals and values in the context of their life. Though some treatment algorithms have been published, in practice, the otolaryngologist plays a significant role in influencing treatment decisions.

In this case, the surgeon is experiencing tension in balancing the principle of autonomy with the principle of beneficence or acting in the best interest of the patient. With further exploration, these ethical principles can often be harmonized. To truly support the patient’s autonomy, the surgeon must understand why she is making a certain choice.

Here, the surgeon may probe why the patient is hesitant about surgery and could discover two concerns: hesitation due to experiencing severe postoperative nausea after her thyroidectomy and worry that she cannot take time off from work to recover from surgery. The surgeon may also realize that the patient did not understand the goal of surgery, which was not merely “opening up the sinuses” but helping her breathe better.

Understanding this context helps the surgeon make a clearer recommendation that amplifies the patient's autonomy by grounding medical advice within the context of their goals and values. Perhaps the surgeon could say:

“I hear how debilitating this is in your day-to-day life and that you can't keep up with your grandkids anymore. I worry that more medicine won't help you breathe better, and I am hopeful that surgery will. I sense that the timing of surgery and your concerns about nausea are significant downsides for you, but I wonder if we can minimize those so we can help you breathe better."

It is the role of the otolaryngologist to communicate what treatments may accomplish for the patient and how known downsides may affect the patient’s quality of life so that the patient can make a truly informed choice. This may mean that the otolaryngologist should focus less on the medical facts, such as technical explanations of surgery, and instead on the practical goals and downsides of surgery.⁵ This type of communication invites an open dialogue in which patients can communicate their goals, preferences, and values and jointly select a personalized treatment plan with their surgeon. In this model of shared decision-making, patient autonomy is enhanced.

References

1. Olejarczyk JP, Young M. Patient Rights and Ethics. [Updated 2024 May 6]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan. Available from: https://www.ncbi.nlm.nih.gov/books/NBK538279/
2. Haug KL, Clapp JT, Schwarze ML. Innovations in Surgical Communication-Provide Your Opinion, Don't Hide It. JAMA Surg. 2023 Oct 1;158(10):993-994. doi: 10.1001/jamasurg.2023.2574. PMID: 37531127.
3. Miglani A, Soler ZM, Smith TL, Mace JC, Schlosser RJ. A comparative analysis of endoscopic sinus surgery versus biologics for treatment of chronic rhinosinusitis with nasal polyposis. Int Forum Allergy Rhinol. 2023 Feb;13(2):116-128. doi: 10.1002/alr.23059. Epub 2022 Sep 4. PMID: 35980852; PMCID: PMC9877092.
4. Ramkumar SP, Lal D, Miglani A. Considerations for shared decision-making in treatment of chronic rhinosinusitis with nasal polyps. Front Allergy. 2023 Mar 10;4:1137907. doi: 10.3389/falgy.2023.1137907. PMID: 36970067; PMCID: PMC10036764.
5. Schwarze ML, Arnold RM, Clapp JT, Kruser JM. Better Conversations for Better Informed Consent: Talking with Surgical Patients. Hastings Cent Rep. 2024 May; 54(3):11-14. doi: 10.1002/hast.1587. PMID: 38842906.