Patient autonomy has traditionally been one of the most prominent principles of American medical ethics, but often patients don’t make decisions about their care alone. Some choose to involve family members, even sometimes allowing the family’s desires to supersede their own.
Respecting autonomy necessarily means respecting patients’ decisions. Physicians can engage patients about decision-making in ways that are inclusive of family input, and help consider possible roles of surrogate decision-makers for patients who do not have decision-making capacity.
The AMA Code of Medical Ethics provides guidance to support patient self-determination, such as Opinion 5.1, “Advance Care Planning,” which includes ways that physicians should routinely engage their patients and families.
An article in AMA Journal of Medical Ethics® (@JournalofEthics) features this advice from pediatric hematologist-oncologist Laura Sedig, MD, based on a hypothetical case of patient-family disagreement about whether to continue aggressive treatment at the end of life. She offers six key recommendations for managing this kind of situation.
Get to know the patient’s family. Making decisions about treatments that offer little hope of substantial benefit can be difficult for everyone, especially when the physician has not had adequate time to develop relationships with the patient and family. Work to build those relationships so all family members trust your recommendations, especially if you’re a new member of the care team.
Minimize confusion. A patient’s care is often divided among multiple clinicians, so it is essential for them to discuss the case together. This doesn't mean making decisions for the patient. Rather, this means achieving professional consensus about the options and their corresponding risks and benefits so that family members receive consistent information from caregivers about potential next steps.
Help everyone identify their values. Studies show patients’ values and those of their family members are often closely aligned, so facilitating a discussion about goals and values—especially independence—can generate consensus. In the case of end-of-life situations, this can help family members understand and respect each other’s perspectives.
Encourage the patient to be open. Remind patients that their family members might be more open to their desired care options than they think, and encourage patients to share their hopes.
Preserve confidentiality. Prior to a conversation with the patient’s family regarding the risks and benefits of therapy, work with patients to determine which pieces of medical information to share and how it should be delivered.
Don’t hesitate to call in help. A best result of this conversation would be that patients and family agree on treatment plans. It could be, however, that family members disagree with a patient’s wishes or that a patient defers to family members, which is acceptable in the absence of coercion. Enlisting social work and chaplaincy could help mitigate tension and create consensus.
