Why Don’t Women With Breast Cancer Understand Their Condition

In Breast Cancer, Recent Posts by Barbara Jacoby

Several years ago I came across an article that talked about a study that was done regarding women with breast cancer and the understanding that they had about their condition. The results may seem rather startling when taken at face value in that it seems to suggest a failure on the women’s part for not having this information. One response that I received after originally sharing this article was particularly touching. The patient was taking responsibility for her own lack of knowledge indicating that chemo brain may have been a cause so she should have kept a diary for herself. However, I have a very different take on this matter.

When patients feel that they have been made a part of shared decision making, they do feel empowerment and more committed to following the course to which they have agreed which usually results in a better outcome for the patient.Barbara Jacoby

The conclusions from the study led the researchers to identify that “a critical need for improved patient education and provider awareness of this issue” is needed. I completely agree with this suggestion but I don’t think that a study was needed to reach this conclusion. Based upon my own experiences and those of others with whom I have spoken, the patient does not have this information available because no one ever took the time to give it to them. It seems that many doctors believe that the patient doesn’t need to be informed because they won’t understand the information anyway and that there is no need for them to have it because the doctors will direct them with regard to their course of treatment because the doctor knows what is best. For them, the old way of people blindly following doctor’s orders is still very much the law.

Another reason that doctors quite often don’t discuss this type of information with the patient is because they don’t have the time. Medicine has now become a business on a new level because many practices have been forced to become a part of a group in order to survive and each doctor is expected to see a certain number of patients each day in order to assure that enough money is being brought into the group. Added to that is the requirements for medical records to be electronically kept so that in many cases the time that may have been available for discussions with the patient in the past is now being used to record the data on some sort of electronic device to assure that it is understood for purposes of proper coding so that approvals and/or insurance payments can be received as quickly as possible.

The sad part is that both the patient and doctors lose in this situation. If a patient is not given enough information to understand their condition and what might be given to them as recommended treatment, the patient may choose not to follow the prescribed steps because they don’t have any sense of real need for it. Recommended tests and treatments may be understood by the patient as just something that the doctors are doing so that they can make more money. After all, how many stories have we all seen in the press about overdiagnosis and unnecessary surgeries being performed? If a patient is not given sufficient information, they may feel that they are in that same situation or may be being used as a guinea pig for some sort of research project.

For the doctor, respect, trust and satisfaction may also be lost in such situations. If a patient does not understand the reason for a course of treatment or a recommended surgery, they may very well lose faith in their providers and either seek assistance elsewhere or just ignore the problem altogether. The doctors may also be perceived as not caring enough about the patients and not only lose the patient that is currently being treated but also lose other patients when word is spread among a patient’s personal community about the doctor with a recommendation that others should seek medical help elsewhere.

Hopefully, more doctors will take the time and make the effort to educate the patients that they have immediately in their spheres. Every effort should be made to provide as much information to the patient as the patient is willing to accept. Little things like writing down the information for a patient who seems to be overwhelmed can make a huge difference so that they have something to take away to be discussed and/or reviewed individually or with others after the appointment.

Not every patient chooses to know the basis of how their care and treatment has been determined but that doesn’t mean that the information doesn’t need to be shared in some form so that the patient has it for reference at a future time. When patients feel that they have been made a part of shared decision making, they do feel empowerment and more committed to following the course to which they have agreed which usually results in a better outcome for the patient.