Be the Active Center of Your Care Team

Update: Diane Fouts passed away in January 2020. We honor her memory and are grateful for her many contributions to Huntsman Cancer Institute.

I can’t count the number of times I’ve written the sentence, “You are the center of your cancer care team.” It’s part of my job as a writer and editor at Huntsman Cancer Institute (HCI). These days, I’ve been experiencing that sentence from the patient’s point of view.

It’s true, and not exaggerated in any way—the people who take care of you really do care about you, your needs, and your concerns. And they put them first, just as HCI’s guiding principle #1 says—The Patient First.

There’s a catch, though. As the center of the team, it’s important that we patients take an active part. Here are some ways to do that:

Ask questions!

• If your doctor or nurse tells you something you don’t understand, ask them to explain medical terms in simple language. Your team needs you to understand, and they will be happy to help you.
• If your team tells you something that makes you feel scared, say so. More information from your doctor can help ease your fears.
• If something doesn’t look or sound right, ask about it. This actually happened to me: I had been in the hospital for a few days, and my nurse handed me the usual cup of pills to take. Except there was a new pill in the cup. I asked the nurse, “What is this pill? Did my doctor prescribe a new medicine? When the nurse checked the computer, it turned out the “new pill” was actually intended for another patient. My questions prevented potential disaster, and that nurse was very glad I spoke up.

Speak up!

• When you talk with your doctors and nurses, they can help solve problems. This can help your treatment turn out better.
• After your doctor or nurse gives you instructions, repeat back what you heard. This lets them know whether you understood. If you didn’t, they will clear up the misunderstanding.
• Tell your care team about any problems or side effects you are having. Be honest about how much pain you feel; tell them if you haven’t been able to eat. They won’t know you are having problems unless you tell them. When they know, they often have ways to ease the problems.

Remember!

• Your care team has many players who are not doctors or nurses. Patient coordinators, social workers, dietitians, and technicians are also here to help you. “The patient first” principle is top priority for them, too. If you have a question, ask. If you have a problem, speak up.
• And that reminds me—some of the most valuable players on my personal cancer care team are the massage therapists, acupuncturists, and cancer exercise specialists in HCI’s Linda B. and Robert B. Wiggins Wellness and Integrative Health Center. Their care works together with your cancer treatments to help you feel better and stronger. That’s what quality of life means.

In short, communicating with the rest of your care team is what makes you an active member. You can do it in two easy steps: Ask questions. Speak up.