In the Driver’s Seat

From the Editor's Desk
February 2, 2016
Lidia Schapira, MD, FASCO

World Cancer Day is this Thursday, February 4th, and it gives us a chance to reflect on what each of us can do to cure or treat cancer and to help those who are struggling with this disease. It is a time to make a pledge and take action. Cancer advocates emphasize that patients need to take an active role in directing their cancer journeys. One of the key ways that patients can do this is to establish collaborative relationships, or partnerships, with the members of their professional cancer care team. A great starting point for building a working bond with members of the cancer care team is through effective communication.

Those living with cancer know how important it is to have a trusted friend or relative who can provide support. A friend, spouse, or partner can drive and take notes, help prepare the questions for the doctor, and order these questions so the most immediate concerns can be discussed in a short visit with the treating oncologist. Finding and trusting a partner like this requires effective, constant communication. Creating similar relationships with the cancer care team requires the same level of communication.

I’ll share a few helpful communication tips that I have seen work well in practice.

#1. Make “I” Statements

You may want to take the lead in making a treatment or care decision, but perhaps you need more time to think and gather information. Maybe you need time to process the things you have heard at a recent appointment. People are different. Some folks want to hear all the information and then ask their doctor to decide. Others want—and need—to take partial or full responsibility and control. We have learned that patients who are active in making decisions about cancer care end up managing their side effects better. This also means that they will report a better quality of life.

Start by stating positively what you want and need by making “I” statements, such as “I’m feeling confused by the different opinions I heard” or “I think I will discuss this with my primary care physician before making a decision about surgery.”

Ask your doctor if you can communicate via email if you are more comfortable with email. For example, “I would like to think this over. May I send you an email tomorrow with my thoughts?” Or, if you feel that you simply don’t know enough to decide, ask your doctor to give you more detailed information, such as “I’m not sure I know enough to make a decision. Can you please tell me more?” Taking a part in this process gives you stability and a feeling of regaining control of your life. It also helps you feel hopeful.

#2. Find Your Style

Find your style for making important decisions. Do you rush into making big decisions? Do you research each and every option and take a very long time to make a choice? Do you ask for opinions and guidance from others? Or do you like to make decisions on your own?

Think about how you made other important decisions in your life. How did you go about choosing your career? How did you choose where you live? Think about the other people in your life who know you. They may be able to provide wise counsel or support. These people may be your primary care physician, a friend, or a member of your religious community.

There is no single good communication style. What matters is that you feel as informed and as involved as you need to be for your own comfort. share on twitter 

#3. Be Organized…It Pays Off

You have limited time to communicate with your doctor or nurse practitioner, so being organized and prepared can maximize the effectiveness of your discussions. It is really useful to organize your questions and even to list them in order of importance. You can then show your doctor or nurse practitioner this list and he or she can have a sense of what worries you most and what needs to be addressed during the visit.

It helps to save and file correspondence with the hospital or clinic and with insurers. It’s also helpful to collect the data of active treatment as it is being generated and added to the medical chart. Having this information handy will allow you to review information that may be important later for your health. This knowledge may also lead to specific recommendations for future testing and monitoring.

The same goes for any news clips that address new kinds of treatment or promising research—take these with you when you see your oncologist if you are intrigued or simply want to know if these new treatments could potentially benefit you.

#4. Bridge Uncertainty

One of the most difficult tasks for cancer patients and clinicians is to make decisions when the future is uncertain. At times there is simply not enough knowledge to drive a clinical recommendation, and so patient and doctor need to bear the burden of uncertainty together. It helps to think about the evidence and also to review an individual’s priorities and the physician’s experience treating the disease.

These are important and meaningful conversations. With a patient, I can review my experience as well as the available evidence and then give her a personal recommendation. We can think about options together by visualizing best- and worst-case scenarios. Sometimes, we talk about time frames. We always try to get to the difficult, pressing issues that need to be resolved.

Working collaboratively helps to ease the anxiety of making a decision by relieving some of the stress associated with “not knowing.” share on twitter In the spirit of World Cancer Day, we can pledge to continue our support for interventions that help patients gain control of their cancer through access to top-notch information, the support of family and professional caregivers, and the guidance of expert clinicians. After all, it is they, the patients, who are in the driver’s seat.

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