Responding to Cultural Limitations on Patient Autonomy: A Clinical Ethics Case Study.

Abstract

This paper is a clinical ethics case study which sheds light on several important dilemmas which arise in providing care to patients from cultures with non-individualistic conceptions of autonomy. Medical professionals face a difficult challenge in determining how to respond when families of patients ask that patients not be informed of bad medical news. These requests are often made for cultural reasons, by families seeking to protect patients. In these cases, the right that patients have to their own medical information in order to make autonomous decisions is in tension with the possibility that patients could hold values that require limiting their autonomy with regard to medical information disclosure, often based on the idea that family should take on difficult decision-making as an act of care. We describe one such case, of an 83-year old Russian woman whose husband requested she not be informed of a new cancer diagnosis. The appropriate response to this request was to ask the patient about her values separately, without disclosing any medical information until her values were clear. This patient indicated she wanted the care team to uphold her husband's request. This response makes the importance of determining a patient's values before moving forward with disclosure clear: she would not have wanted to be informed of her cancer. We describe our conversation strategy, which allowed value exploration without disclosure and highlighted that the obligation to respect a patient's autonomy sometimes includes an obligation to allow a patient to choose to limit their own autonomy. This case also highlights that this kind of conversation prioritizes the patient's values rather than the family's or care team's, centering patients in the way that is ethically appropriate.