One of the toughest situations in oncology is the discussion about next steps, particularly when it comes to treatment of recurrent or metastatic disease. I believe very much that it is realistic to offer a patient the hope of cancer as a “chronic disease,” that treatment can result in disease stability, even though I cannot predict how chronic “chronic” is.
I was reminded of this during an exchange with Joan*, one of my patients with cervical cancer. She had been living well despite metastatic disease for over 15 months, but had just relapsed after being off chemotherapy for six months. We met to review her scans, to determine how “bad” it was. Then we sat down to make a treatment plan.
“You have several options,” I said. “We could try combination chemotherapy again since you responded to it or we could use single agent chemotherapy. There are also clinical trials we could review, such as a phase I trial of drug xxx. Alternatively, since you actually feel pretty good—we could sit on things for the next few months and re-evaluate; gauge how slow or fast the cancer is growing.”
We launched into a discussion of each option—the side effects of treatment, the potential benefits of treatment, and the concessions she would need to make in her own life to accommodate a new regimen. She asked for some time to think about all of it, so we made plans to meet back in a week.
A few days later she left a message for me to call her back. There was a sense of urgency in her message, so I called her as soon as I could.
“I know you want me to decide, and thank you for all of the information,” she stated. “I need you to know I am scared, that I’ve read on the internet that this is terminal, and that I will probably be dead—sooner or later. All of my options are toxic, and I don’t know if I can decide. You need to help me here—I don’t want to make a mistake that might cost me my life. Just tell me what to do.”
There is an ideal that all of us in medicine aim to achieve—shared decision-making. It is the balance struck between physicians and patients of just enough but not too much information that will allow patients to feel they have participated in their care and had a say in what their next treatment will bring.
In a recent study published online in Cancer, Dr. Neal Meropol and colleagues share the results of the CONNECT study, which evaluated the impact of a computer decision aide on communication and decision-making among patients and their oncologists.1 What was unique in this study is that communication skills training (CST) was provided to patients and not to their physicians. Compared to those who did not receive CST, those who did had higher levels of satisfaction with discussions about the format of physician communication and quality-of-life issues. However, no differences in satisfaction emerged regarding discussion of diagnosis, prognosis, or treatment options. Despite this, participants who received CST felt they reached decisions easier and were more satisfied with the decisions they made.
Although this work does not represent the urgency to expand treatment options for patients with cancer, research aimed at assisting patients in decision-making is important. Physicians have come a long way in getting patients to understand that they are human; that we are not all-knowing, and sometimes we don’t have the answers.
At the end of the day, there will always be a patient looking for guidance and a doctor doing his or her best to provide it. If we can improve on the experience of communication, we should try.
- Meropol NJ, Egleston BL, Buzaglo JS, et al. A Web-Based Communication Aid for Patients with Cancer. The CONNECT Study. Cancer 2013. Published online 1/14/2013.
*Personal identifiers changed to protect privacy.