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My mother won't let us talk to her doctor to clarify her diagnosis; what can we do?

Plhough asked...

My mother was diagnosed with lung cancer. I wasn't there when the oncologist told her but she said he said it was a "small carcinoma". Another doctor told one of my sisters it was stage 4 and pretty bad. My mom thinks she has a small tumor that can be eradicated with chemo. I think the oncologist meant it was a small cell lung cancer as opposed to non-small cell lung cancer. I haven't had a chance to see the oncologist and she does not want any of us asking the doctor questions unless we are in her presence. Any suggestions?

Expert Answer

Bonnie Bajorek Daneker is author and creator of the The Compassionate Caregiver's Series, which includes "The Compassionate Caregiver's Guide to Caring for Someone with Cancer," "The Journey of Grief," "Handbook on Hospice and Palliative Care," and other titles on cancer diagnosis and end of life. She speaks regularly at cancer research and support functions, including PANCAN and Cancer Survivor's Network. She is a former member of the Executive Committee of the CSN at St. Joseph's Hospital of Atlanta and the Georgia Chapter of the Lymphoma Research Foundation.

First, I have to help you remember about HIPAA, which protects patient privacy. What this means for you is that your mother must give you and your sister permission in writing for the doctors or other medical professionals to share your mother’s health information. If she has not given that permission, you cannot go to the doctors directly.

But if she has given you permission, you can ask for clarification from the oncologist. You are right that the two opinions are contradictory. Small cell cancers are aggressive and can spread quickly; this would seem to make sense for a Stage 4 diagnosis, which means that there are metastases in other parts of the body. A small cancer would not likely have that same diagnosis.
In telling you about a “small” cancer, a few things could be going on with your mother: She may not understand the diagnosis; she may not be processing it correctly because of denial; she may be afraid; she may not want to share because it is private, or she may be concerned about worrying you and your sister. Additionally, many cancer patients feel a loss of control, and withholding information is one way they keep control.
Your goal should be honest communication. If she wants to keep those details to herself, you must let her. I know that’s painful, but that’s her choice. What you should do is help her get the best treatment she wants for her condition. Try to find some peace that you’re doing the best you can, given the circumstance.