Improve communication with your health care team so you can address the things that matter most to you.
When you face a serious illness, it means making decisions about your treatment, your care, and your life. The best, most patient-centered health care results when patients and caregivers communicate with health care professionals to make decisions together. We call this shared decision making. Patients can advocate for themselves and caregivers can advocate for their loved ones by learning how to make true shared decisions.
It’s the ability to customize the experience and do so in a perspective that is informed. It’s a way to take control of the experience so that I have a quality of life that is sustainable over a long period of time.
The doctor looked at me and said, ‘The good news is the cancer is 100% treatable and I can go on that journey with you.’ He told me everything that was going on, everything that was going to happen with my body, but he said, "Everything is our choice, our plan together."
I was diagnosed with breast cancer, I did my research and found out there is a test that is important in deciding if you need chemotherapy. When I asked my doctor about it, he said he didn’t think I could afford it. I told him that was my decision, that I needed to know the options, and we had to talk about them.
Make sure you have a doctor you can talk to—one who answers all your questions.
Prepare for your appointments. Conduct research using reliable sources, and write down important questions or issues in advance.
Bring a trusted friend or relative to important appointments to help you understand your options and make decisions.
Be honest with your doctor: Let them know what’s happening, and tell them what matters to you most.
Tell your doctor if you’re concerned about the costs of your care or you cannot afford the treatments or medications they recommend.
Make sure you understand your options and necessary decisions before you leave. If you don’t understand the answer, ask the question again.
Talk to nurses, nurse practitioners and social workers affiliated with the medical facility. They often have more time to spend with you and are excellent sources of information and support.
Ask questions. Your doctor and health care team are your best source of information about your condition.
If you don’t understand what a specialist is telling you, remember your primary care provider can be a great resource to “translate” and help evaluate your options.
Learn as much as possible about your specific condition. Treatments can vary dramatically based on minor details about your diagnosis, the stage of your disease, and other factors.
Remember that general online searches probably won’t reveal all the information you need to understand your treatment options. (See more helpful sources below.)
Visit government health care sites including Cancer.gov and clinicaltrials.gov for accurate, timely information written in simple language.
Reach out to advocacy groups that focus on specific diseases, as they’re often excellent sources of support and information.
Friends, family members and other patients are great sources of support, but they rarely have a deep understanding of your situation and they may offer up incorrect information, so always run their ideas by your health care team.
Avoid online sites and chat groups that aren’t connected to reputable organizations and aren’t monitored by health care professionals. There’s value in sharing experiences, but these sites often contain misinformation or information that isn’t useful for your condition, which can be very damaging.
Access your patient portal (electronic medical records) frequently. You can find all the information about your tests and visits and ask non-urgent questions of your health-care team.
If you’re nervous about asking your health-care team questions for fear of a negative response or being judged, remember you’re the only one who can make the right decisions for you. Seek out professionals who care about your comfort level.
Write down your questions and concerns so you remember to ask them during the conversation.
Think about your personal goals: Make sure your tell your health-care team what matters to you most, as part of the shared decision making process.
Bring a family member with you or think about having a family meeting if you are facing a difficult decision.
Don’t be afraid to tell your doctor if you’re worried about the costs of your care. There are often other options or approaches that help manage or reduce the costs.
Talk to other members of the team, including nurse practitioners, nurses and social workers if you have concerns about your treatment or its impact on your life.
The moment you’re told you have a serious illness, you enter a new world—one in which you don’t speak the language or know the landscape. It’s hard to ask the right questions or make shared decisions at that time, but if you have a doctor you can trust, gather reliable information, and find support, you will become a better self advocate and a true partner in your treatment and care.
Over time, you’ll learn more about yourself and what matters most to you during this journey. You’ll get better at asking questions and balancing the benefits and risks of your treatment options. Your relationship with your health care team should become more open and honest, as time helps you establish mutual trust.
These are all important factors in making shared decisions. The knowledge and experience you gain on your journey may not make it easier to live with serious illness, but it will help you advocate for yourself and improve the quality of your life.
Season 5 | Episode 3