Ethics

When patients get overwhelmed, informed consent needs rethinking

Both emotional overwhelm and informational overload are phenomena commonly experienced by patients, and they can present serious challenges to physicians’ doctrine of informed consent. Medical ethicists suggest a categorical rethinking of this doctrine in specific clinical contexts and suggest several ways that physicians can achieve their higher calling—protecting patients—when informed consent is impossible to achieve.

The AMA Code of Medical Ethics provides additional guidance on end-of-life care, such as opinions on “Informed Consent” and “Withholding Information from Patients.” This ethical advice helps physicians present information and answer questions about recommended treatments so patients can make well-considered decisions about care.

Whereas emotional overwhelm can pose hurdles to informed consent, informational overload carries the possibility that patients’ capacity is so compromised by the complexity or volume of information at hand that they cannot attain the understanding necessary for informed decision-making.

Following are highlights from an article in AMA Journal of Ethics® (@JournalofEthics) by bioethicists at the Cleveland Clinic. Citing whole-genome sequencing as the quintessential example of a clinical situation in which informational overload may occur, they outline eight key ways to protect patients when informed consent is impossible to achieve.

“If there are no clear benefits to a genetic test, it should not be offered to patients,” the authors say. There should be a clear indication of why the test is necessary, as well as a clear benefit outweighing the potential harm before the test is done. Likewise, physicians should discourage patients from pursuing tests for reasons that do not meet these criteria.

“Extend the decisional timeframe.” Encourage patients to take adequate time to decide whether to undergo indicated tests. Given the complexity of the information, decisions should not be made within the confines of an ordinary appointment. Rather, patients should take as much time as they need to arrive at good decisions.

“If a test is clinically indicated, consider using an alternate model of decision-making and consent.” One example is “governance of consent”—involving others in the decision-making process. Another is a deliberative-democracy process, such as a community jury, in which patients deliberate with peers facing the same choices, with support from experts.

“Encourage relational support from family or friends when complex decisions are at stake.” When patients are confronted with complex information, sharing it with family members or friends can help.

“In clinical situations in which patients may be at risk of overwhelm, consider using a shared decision-making approach instead of a traditional informed-consent approach.” Many experts recommend the use of shared decision-making, which has the goal of making medical decisions that are in keeping with evidence and standards and consistent with a patient’s values.

“Consider sharing information in digestible, progressive chunks, and on a need-to-know basis.” Share only what is necessary for prevention of serious harms, and tailor information in ways that protect patients from being overwhelmed and making potentially harmful choices.

“Because sharing information in chunks risks leaving clinician bias unchecked … work with a support mechanism in place, such as consulting with an ethics committee.” Voice your reasoning to the committee, which will, in turn, help guide decisions on what information to share with the patient and compensate for inherent physician biases. This is an important step when high-stakes medical decisions involve complex information.

“Undergo communications training aimed at developing skills related to facilitating understanding, communicating information and providing support to patients.” This has been shown to improve patient satisfaction and physician empathy, facilitate the formation of meaningful patient-clinician relationships and decrease clinician burnout.

Sign up to receive monthly email alerts when the new issue of AMA Journal of Ethics is published.