How Much Is Too Much ?
Breast cancer treatment options are quite extensive. In a recent publication in the Journal of General Internal Medicine (J Gen Intern Med 28:630-636), 368 women at 8 NYC hospitals were questioned about the amount of information they received during decision making for their early stage breast cancer. Too much perceived responsibility for breast cancer treatment decisions was found to be associated with poor baseline treatment knowledge and 6-month decision regret. 21% of those questioned felt that there was “too much” responsibility given to the. patient in making treatment decisions. This suggests that many are overwhelmed.
As physicians, we pride ourselves in providing quality patient education. There are printed materials, medical websites, and, multimedia material to help patients make informed decisions. I know that at Comprehensive Breast Care, we can spend over an hour, initially discussing treatment options, and, consequences. It’s simply not an easy decision for women to make, when unfortunately, the time to make a decision, is while in the midst of absorbing a new diagnosis, which is a life changing event in and of itself. In addition, it took years of training and experience for cancer specialists to understand the nuances of treatments; trying to ‘squeeze’ that amount of information, into a one hour presentation is almost impossible. I will typically observe, the ‘glazed look’ of ‘information overload’, and, realize when patients and their families are no longer absorbing the information.
This study also revealed differences in the perception of the responsibility in decision making, based on the race of the patient, as well as, a patients level of education. Thus, there is quite a bit of responsibility placed on the physicians in their interpretation of the patient/families level of understanding, information necessary to make an informed decision, and, the perception of when: ‘enough is enough’.
Decisions include: 1] which surgery – lumpectomy vs. mastectomy?; with or without reconstrution? Which type of radiation to be used, whole breast? Partial Breast? Canadian Fractionation? Is there a clinical trial and should enrollment be considered? Should genetic testing be performed, and, what are the implications? Just to name a few. The use of a Multidisciplinary Approach to treatment certainly can help. In our system, patients will ultimately consult with other specialists (medical and radiation oncologists, as well as, genetic counselors) during the development of treatment decisions. It is still incumbent on the physician who makes first contact with patients, to have a good understanding of the treatment options, regardless of discipline (surgery, radiation, chemotherapy, endocrine-hormone therapy). After all, someone needs to ‘captain the ship’.
Despite these best intentions, interestingly, most patients don’t love the idea of making their own decision. As physicians, we always thought that was the goal. My experience has been, just the opposite. While all patients love having an understanding of their disease process, and, all the treatments that will be utilized to obtain a cure. Very few embrace the idea of making these decisions, and, would much prefer that their physician offers their opinion as to what is best. The challenge in this regards, is that most aspects of treatment have options that are equivalent; with none being better or more successful option.
With so much information, it’s no wonder this is an exhausting time in a cancer patients journey.