A Request for Nondisclosure: Don't Tell Mother
Authors: James Hallenbeck, Robert Arnold
Journal: Journal of Clinical Oncology (2007)

Mrs. X was a 75-year-old woman who was admitted to the hospital with abdominal pain and severe depression. Her work-up revealed metastatic pancreatic cancer. Given her functional and nutritional status, her prognosis was less than 3 months. The patient had two daughters who were adamant that no one should tell their mom she has cancer. They understood that treatment was unlikely to prolong her life and wanted to take her home with hospice. You are unsure what to do— you feel like the patient has a right to know and yet her family is adamant that you cannot tell her because it will “kill her.” Requests for nondisclosure, as reflected in the case, may cause clinicians considerable distress. Does not the patient have a right to know the truth? What about informed consent and patient autonomy? Am I being asked to hide the truth or lie? Although the topic of nondisclosure raises legitimate ethical questions, we believe these cases are too often conceptualized as dilemmas in which one party must win and the other must lose: either the family is overridden and the patient told her diagnosis, or the physician’s conscience is violated and the patient is not told. A large literature lays out the arguments for and against disclosure in these cases. We think, however, there is a third way that often allows satisfaction of the patient, the family, and the physician’s concerns. This method depends on an understanding of the cultural factors that underlie the family and physician’s views and skillful use of negotiation techniques. In this article, we briefly review the literature on nondisclosure and provide some suggestions for handling requests similar to that posed in the case. Historically, patient nondisclosure regarding serious, life-threatening, or terminal illness was the norm in virtually all societies. In 1965, Glaser and Strauss wrote, “[A]merican physicians ordinarily do not tell patients outright that death is probable or inevitable. . . .[F]amilies also tend to guard the secret. Family members sometimes may reveal it, but in our own study we never witnessed deliberate disclosure by a family member.” Only in this generation has there been a rapid shift in American medical values from nondisclosure to disclosure. In most other countries, both developed and developing, the primary recipient of bad news is the family. Although the issue of nondisclosure is being debated with increasing frequency in the world literature, the question is typically whether the patient should be told, in addition to the family. For example, as Uchitomi and Yamawaki point out, “In Japan, all family members are informed by physicians of the cancer patient’s diagnosis, condition, and therapeutic program, before the cancer patient is told the truth.” Although American clinicians may view requests for nondisclosure as a threatening departure from norms of clinical practice, from a global perspective, we are the outliers. It is important to recognize that cultures are not monoliths; significant differences in opinion exist within cultural groups regarding nondisclosure. Numerous studies have found that where family-oriented decision making dominates, many individuals both recognize the propriety of nondisclosure and yet personally wish to be involved in their own health care decisions. Statements like, “In our country the family decides, but as for me, I would like to be told what is going on and decide myself,” are common.