I cannot stress enough the importance of talking to the healthcare team. Doing this can be intimidating as you know you are not at the same level as the doctors, nurses, pharmacists, and other healthcare team members. When I was a patient being treated for a Brain Tumor in 2014,  I felt intimidated when the doctors made rounds, and everyone circled my bed and talked about me, and I  had been a nurse for over 40 years! However, I knew how important my input was in my care, so I became a very active patient and involved in every aspect of my care plan.

I hope these tips help you to understand that having an open dialogue with your team is essential.

First, I want you to know that no question is too trivial. If it is on your mind, speak up.

Second, know you should get an answer to every question you have. You need to know everything that is being done to and for you by every healthcare team member.

Third, being prepared with a list of questions helps the team know what is on your mind. Your questions are important as you might hit on a detail or issue the doctors have yet to consider. So speaking up can help your team better care for you.

Fourth, if a team member doesn’t have time to answer you during an appointment or while making rounds in the hospital, make an appointment with them to come back to finish the conversation. We know they are busy, but will make time for you if you ask.

Fifth, remember that you are the most important person on the team. Remind them of this if you get pushback. Be respectful, but don’t give up because you feel you are holding them back.

Sixth, as I have mentioned in previous posts, consider asking your spouse, your son or daughter, a friend, or a paid advocate to be with you when you go to the doctor, are in the hospital, or have therapy. Doing so gives you the moral courage you need to advocate for yourself.

Seventh, review the questions you want to discuss so the person with you can remind you if you need to remember to ask something or tell the doctor. Give them a copy of the questions so they can follow along with the conversation and help you if you get stuck.

Eighth, take notes on what the doctor or health care provider says. Doing so will allow you to review the conversation after the discussion and help you put things into perspective.

Ninth, learn how to access your medical records from your patient portal to keep track of test results, appointments with various doctors, the plan of care, and medications as you prepare for your appointments with your team.

Tenth, keeping a binder with important information about your care and questions you have will help you be organized. Often, a doctor might have yet to look at a test or blood work, so having a copy in your binder will allow you to share the information so they can be up to date and answer your questions.

Eleventh, ask the doctors and other team members their preferred communication method. Your team members might want to talk off hours when they have more time, so knowing this will help you and them plan when to talk.

Twelfth, think of your doctors, nurses, and others as part of your team. You are all on the same side, and you are the most important member. They want you to do well, so helping you understand the care plan is essential. The more you know and participate, the better all are.

Thirteenth, your team members are not mind readers, so bring up what is on your mind. Helping you cope, understanding your diagnosis, and setting realistic expectations is what they are in place to do. The more you tell them, the more they can help you.

Fourteenth, let the team get to know you as a person. Remember, no one knows you like you know yourself or how your family and close friends know you. Tell your team who you are, what you did in your work, about your family, and how important it is for you to get better for them. Letting them know who you are helps to humanize you to the team and allows them to see you as a person – not just a patient.

I hope the post provides the information you and your family can use to help you be the best advocate you can be when you are involved in the complex healthcare system. If you have any questions or comments, please put them in the chat, as others may have the same questions. I will review it and get back to you!