How to Participate in Your Cancer Care and Treatment Decisions
Hi, I’m Isabella, and I recently finished my cancer treatment, and this is my oncologist, Dr. Johnson.
Dr. Johnson and I touch base during my regular appointments and when there is a decision that needs to be made, we talk about:
- All of my options.
- As well as the risks and benefits of each option, including the pros and cons of not doing anything at all.
- And we talk about my personal preferences, including what’s most important to me.
My husband is also a part of these conversations, so we both understand how the treatment plan could affect me and our family. Making these important decisions really is a group effort!
That’s right, Isabella. And what you are describing is a process called shared decision-making. It can help build a trusting relationship between members of the healthcare team and a patient.
Your healthcare team has expertise on the clinical and scientific aspects of managing your care, and you and your care partner or caregiver have expertise on what you’re experiencing, and how the treatment plan fits into your life and needs.
Shared decision-making can lead to a patient feeling more confident when choosing a treatment plan. Plus, patients are more likely to follow through and participate in their care if they feel included in the process.
I really like that concept, that it’s important for me to be a part of the decision-making by sharing my needs and how I’m feeling.
This happened to me at the beginning of my cancer treatment when I was feeling very tired, and it became hard for me to work and to do all the things I usually do. Dr. Johnson and I talked about this, and she walked me through several options for managing the issue, and I was able to choose one that best suited me and my family.
Another vital part of shared decision-making is communicating your personal preferences. It’s important to let your team know what matters to YOU, which could have a big impact on which approach is best for your unique situation.
I’ve got a good example of this: There was an option for me to enroll in a clinical trial as part of my treatment. Dr. Johnson and I reviewed the risks and benefits of participating in a clinical trial, including the fact that I would have access to cutting-edge technology and that I could be helping others.
That’s right. I also let Isabella know that participation may require additional testing and appointments. Joining a clinical trial is a personal decision, and there is no right or wrong answer when deciding if you want to participate.
That’s right – Dr. Johnson made me feel empowered and comfortable with my decision.
I’m so glad to hear that. One of the most important responsibilities I have as a doctor is to create an environment where my patients can feel comfortable asking questions, sharing concerns, and expressing their opinions.
That’s one of the many things I appreciate about you!
Another thing I have found helpful is to write down questions ahead of an appointment to keep me organized, and then to take notes during my visit. I can then ask follow-up questions after my visit through the patient portal.
Excellent idea. Some patients find it easier to have their care partner do the talking during the appointment. And other patients may share information with the nurse before I arrive, so they can help the patient communicate their goals to me. While others prefer to share directly to me.
Yes – everyone’s style is different.
Another thing that can help you feel more in control is to learn more about your cancer and understand your care and treatment options. While there’s a lot of information out there, it’s important you are going to trustworthy sources, such as:
- The Centers for Disease Control and Prevention, also known as the CDC.
- The American Cancer Society.
- EmPOWERed Health.
- And the Patient Empowerment Network, to name a few.
Remember, not everything you read online is accurate or applies to your individual situation. Be sure to discuss anything you’ve learned with your healthcare team.
Another thing that really helped me was connecting with cancer survivors – to talk with someone who had been there. So, whether it’s joining a support group or finding one-on-one support, personal connections can really empower you.
OK, now that we understand shared decision-making – how can you put it to work for you? Let’s review:
- Start by preparing a list of questions and concerns in advance of your appointments.
- Then communicate what’s most important to you, your needs, and how you’re feeling in a style that is natural to you.
- Learn about your disease and understand your treatment options. And ask for materials in the language most comfortable to you.
- Discuss the pros and cons of each treatment option with your team and come to a decision together that is right for you.
- It’s also a good idea to bring a friend or loved one who can help you follow along and take notes during office visits.
- Finally, download the guide that accompanies this video to help you put this information to work for you.
So, what did you learn? Please click this link to access learning questions to test your knowledge.
To learn more about shared decision-making and patient empowerment, watch the next video in this series.
Thanks for joining us!