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“Don’t Tell Them Anything”: Should Surrogate Decision-Makers Be Allowed to Withhold Information from Other Family Members or Prevent Them from Visiting with a Patient? - HEC Forum
While patients have the right to control who has access to their health information and designate visitors, it is not always clear whether—when a patient lacks capacity—their surrogate also exercises such rights. States and federal laws are often vague about the limits of surrogate authority. Even where legal or institutional guidance on this issue is clear, requests by surrogates to withhold information or restrict visitation with a patient can be a source of ethical uncertainty and distress on the part of the clinical team. This paper explores the ethical issues raised by such requests. To date, there has been little exploration of this issue in the clinical ethics literature. First, we summarize the scant existing ethical and legal guidance on this issue. Second, we present two potential approaches to navigating requests from surrogates to withhold information or restrict visitation. Third, we discuss the merits and limitations of both approaches, and introduce some additional considerations that further complicate the picture. We argue for a flexible restrictive approach to information-sharing, and a constrained permissive approach to visitation. Finally, we propose several considerations that clinicians and clinical ethicists might think through in these situations to help guide their practice.
