“Always tell the truth. That way, you don't have to remember what you said.”
-Mark Twain
“She must not know she has cancer! Do not tell her!”
“I must tell her,” I respond. “How can we treat her cancer if she doesn’t know what she has?”
“Others in our family have had cancer and they died! It will cause her too much stress to hear that she has it, too. Tell her she has some sort of infection.” The son pauses. “Doctor, in our culture, the family makes the decisions in matters like this. We are only trying to protect our loved one. You must respect our values.”
I realize I am a Western-trained physician trying to negotiate my way with this non-Western family. How will we obtain informed consent? What about privacy regulations? Who will speak for the family? Does the patient truly want to assign this responsibility?
Until about 30 years ago, non-disclosure was the norm in our own society. When little could be done to change the course of many cancers, the paternalism of the times often led physicians to hide the diagnosis and prognosis from their patients.
Now, however, over 60 percent of newly diagnosed cancers will be cured. Many of these survivors will have gone through rigorous radiation regimens, extensive surgery, and side-effect-laden chemotherapy. How can we not honestly tell patients what to expect or why they can expect their hair to grow back when treatment is completed?
There is no one right answer. On a practical level, a recent article provides some guidelines for dealing with a family that insists on non-disclosure:
- Do not overreact. Take a deep breath and avoid becoming emotional.
- Attempt to understand the family’s viewpoint.
- Be flexible. Work with the family on dealing with practical issues.
- Respond empathically to the family’s distress. Remain open to the patient and the family.
- Talk to the family about what the patient would want.
- State your views as your views. Don’t be dogmatic.
- Propose a negotiated approach.
- Talk with the patient about his or her own desire for information.
Of course, not every person in a particular culture will feel the same way about relinquishing their care to the family. The physician also has to keep in mind that, in some cases, deference to a family’s request might actually lead to harm, inadequate care, or gross violations of Western autonomy-based ethics.
These situations make me sit up and pay attention because of the added stress of keeping everyone properly informed. Inevitably, there are miscues, but, if the relationships are established early, things can move forward. Whatever the family and I decide, I realize that each step of the process will be “interesting.” I am going to learn a lot.
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Ref: Hallenbeck J, Arnold R, A Request for Nondisclosure: Don’t Tell Mother, Journal of Clinical Oncology 2007 (Nov 1); 25:5030-5034.
Ref: Macklin R, Ethical relativism in a multicultural society, Kennedy Institute of Ethics Journal 1998 (March); 8:1-22. (Excerpted in Biomedical Ethics. Mappes TA and DeGrazia D, eds. McGraw-Hill, NY, 6th ed. 2006. pp. 118-127.)
