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How to Be a Better Advocate for Yourself as a Patient

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Kavita Jackson, MD - Blogs
By Kavita Jackson, MDAugust 05, 2021

The ability to advocate yourself, especially as a breast cancer patient, can be incredibly powerful in shaping your cancer experience. It took me a while to realize that as a patient, I have an active and very important role in my medical care.

Yet I also realize that we’re never taught how to navigate the world of medicine from the patient seat. As a result, it’s easy to feel overwhelmed and develop frustration and confusion regarding your diagnosis and treatments -- which is the last thing you need on top of dealing with the emotional impact of a cancer diagnosis.

By practicing the following steps, you can conquer your medical journey by getting your care team on your page, on your terms, and with your best interest in mind.

Do Your Homework

Doctor: “Do you have any questions?”

You: Blank stare

You, 5 minutes later as you’re driving away from the office: “Oh yeah, I forgot to ask her about that rash, and I needed a prescription refill. ... ”

Sound familiar? Our most burning concerns tend to escape us just as we sit down in front of our doctor to talk about them. It happens to all of us. Your doctor has an agenda for your appointment, and you can, too. By preparing for your office visits, you can optimize your time with them to meet all of your needs. I start by writing down all of my questions as they come to me so that when I'm with the doctor, I'm ready to have them addressed.

The same goes for any symptoms I’ve experienced since my last visit. Is my headache worse than usual or have I noticed some new swelling? I jot down the symptoms and any relevant details, like when they occurred, how long they lasted, and whether I took any treatments or not. Writing this down while it’s fresh in my mind makes it easier for me to share with your doctor.

Lastly, I bring all of my current medications (the bottles or a list of them) and new medical records, like test results or a consultation visit with a specialist to the visit with me. This helps keep the doctor up to date on how my health is being managed outside of their care.

Pro tip: State your agenda at the beginning of your visit so your doctor can tailor the appointment to address your concerns appropriately. For example, if you have a follow-up visit after chemo to see how you’re tolerating the medication(s) but you also have questions about an upcoming test they ordered, mention this at the start of your appointment. That way, your doctor can make sure to allocate enough time for your questions. Waiting until the last 2 minutes of the appointment to raise your questions can be a disservice to you, as you may not receive a thorough or fulfilling enough answer.

Ask Questions

Many patients feel intimidated by the idea of asking questions because they don’t want the provider to think they’re questioning their expertise. Others have a strong desire to please the doctor and try to do so by not questioning them. (Research backs this up.) That being said, I know that if I have a question or don’t understand something the doctor said, I absolutely deserve to ask for clarification about all matters pertaining to my health.

Misunderstanding your health care can lead to unnecessary fear, anxiety, and confusion that could be relieved by a simple clarification. Thus, I think a patient-provider relationship functions best when you maintain two-way communication. And remember: There’s no such thing as a stupid question! Even if I ask the same question more than once or ask the same question to different providers.

If you’re not sure what to ask, here are a few questions that have helped me understand more about my health:

When you get a diagnosis:

  • What is my diagnosis?
  • How did I get this diagnosis? (From symptoms? From a lab test?)
  • What does this diagnosis mean?
  • What’s the prognosis, or expected course, of this diagnosis?

When considering tests or treatment options:

  • What are my options?
  • What’s the purpose or goal of each option?
  • What are the potential risks of each option?
  • What are the potential benefits of each option?
  • What would you do and why?

Pro tip: The amount of information you receive at your doctor visit can be daunting and difficult to remember. Ask how you can access this information after the visit to refer to or share with others (for example, a printed handout, email summary, or written notes).

Be Honest       

Although honesty with my provider can be uncomfortable or embarrassing, it’s truly the best policy. No matter what I'm sharing with the doctor, it’s only beneficial to disclose exactly what’s going on and what I'm thinking. Often, medical decisions are made and actions are taken (or avoided) based on the information I provide, so it’s vital to be honest and tell my doctor everything.

This extends beyond symptoms you may be experiencing to your preferences or even your satisfaction with the provider. Your health is more than just what’s happening with your body, and it all can impact your health experience. Don’t be shy. For example, I have a preference for female providers only, so when my female oncologist left the practice and I was reassigned to a male provider, I called the office to tell them I needed to see a female provider. Arrangements were made for that to happen.

Most important, if you sense an issue with your provider or feel your relationship is tense or troublesome, please say something. It’s best to bring it to their attention, as they may not even be aware of your experience. This allows them an opportunity to clarify their behavior and intentions and/or adjust it appropriately.

Pro tip: State your preferences ASAP. For instance, everyone has different preferences about how they receive information -- you might want to know the details of each test result and what it means, you could prefer a one-line summary, or maybe you’d rather the doctor explain it to a loved one instead. Don’t make your provider guess -- be clear and tell them exactly how you want to receive medical information.

Being a patient isn’t easy. It can feel like cancer robs us of so many important pieces of ourselves, with our control as individuals being the most devastating loss. By following these steps, you can harness your power as a patient and guide your experience based on your values and desires.

 

 

 

Photo Credit: We Are via Getty Images

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About the Author
Kavita Jackson, MD

Kavita Jackson, MD, is a triple-negative breast cancer survivor. As a girl mom and woman of color who was diagnosed with breast cancer at age 32, she empowers other women by promoting self-breast exams, dispelling common breast cancer myths, and sharing her raw experience on the other side of medicine. Connect with her on Instagram.

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