Communicate With Your Health Care Team: Detailed Information

This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources.

Your health care team is made up of doctors, nurses, social workers, psychologists, pharmacists and any other medical professionals who care for your physical and mental health. Each member of your health care team is specially trained to treat certain aspects of your life after cancer.

Communicating with your health care team means:

• Asking them any questions you have
• Talking with them about how you feel
• Telling them about any changes in your body
• Letting them know if you have any worries or concerns that overwhelm you

For good communication, it's important that you and the members of your health care team take the time to listen to each other's questions and concerns. Sometimes members of your health care team seem very busy, like they don't have time to talk. For many survivors, the visits are often very short. It's important that you speak up and ask them to make time to answer your questions.

Preparing for your health care team visit is a very important part of good communication. You will make the most of your time in the visit if you provide clear information and ask questions when you don't understand. Being assertive and telling your health care team what your concerns are is the best way for them to understand your needs.

Everyone's communication style is different and what works for one person might not work for another. However, it's extremely important that you find a way in which you are comfortable communicating with your health care team. When you get answers to your questions, you feel confident about the health care you are receiving.

Who might have trouble communicating with their health care team?

Everyone can have difficulty communicating. Talking about your health or your cancer experience may seem especially difficult. Research shows that cancer survivors of all education levels and backgrounds can have a hard time communicating with their health care team. After all, communication skills aren't usually taught in school. Some people are just better at communicating than others. However, if you want to have an active role in your medical care, learning how to communicate with your health care team is extremely important.

Language and cultural barriers often present challenges to communication. Some survivors come from backgrounds that have a deep respect for medical professionals, yet they find it uncomfortable to ask them questions. You might think that it is disrespectful to question your health care team. Your health care team does deserve respect, and so do you. You deserve to have your questions answered. If you tell your team what you do and do not understand, they will be able to create the best treatment plan for you. Knowing you can ask questions builds trust with your health care team.

Language differences may complicate already existing communication issues. Survivors who speak a different language than their health care team may need to communicate with the help of an interpreter. This requires that everyone involved be patient and clear about what they want to say.

Regardless of culture, a survivor may not be comfortable speaking up and asking questions. This isn't always easy to do. It takes practice to become comfortable asking questions. Over time, it does get easier.

Good communication is very important for survivors who have problems with their hearing or have memory and concentration problems. Having a family member or friend at the visit can help make sure that important information is given to the health care team and that the best treatment plan is created.

Sometimes the personalities and communication styles of the survivor and some members of the health care team are not a good fit. Tell a trusted team member about your communication concerns, and ask for suggestions on how to have better communication. If you try to improve your communication with certain team members, and your visits are not getting better, it is your right to request a different provider.

What are some signs that you may benefit from better communication with your health care team?

If you have the following concerns, you may benefit from better communication with your health care team:

• You leave the office feeling like you still have questions or that the questions you asked were not answered
• You or your family members think you never have enough time with members of your health care team to discuss your questions or concerns
• Your health care team members don't seem open to discussing a question, concern or problem you have

If one member of the team cannot answer a question, other members of your team should be able to help. If you continue to have problems, it is OK to change medical professionals.

Sometimes members of your health care team suggest that you seek a second opinion or direct you to another person who they feel can better answer your questions. This does not mean that they don't care about you or your question. It usually means they want to make sure you get the best possible answer from the right person. Not all health care professionals communicate in the same way, which is why it's even more important that you communicate your concerns and ask members of your health care team questions when you aren't sure about what they are telling you.

How can good communication with their health care teams benefit survivors?

Good communication with your health care team can help you:

• Know up-to-date and accurate information about your cancer and possible aftereffects of treatment
• Participate in making decisions about your medical care
• Manage your symptoms and get good follow-up care
• Make the most of the time you have with your health care team
• Reduce stress by making sure your questions are answered
• Feel confident that you are getting the best health care

You may not be familiar with certain medical terms or know anything about the types of medicines your health care team prescribes. Asking a lot of questions may be the only way you are able to understand how to best take care of your health after cancer. Having open lines of communication with your health care team may help make you aware of any new developments in health care, treatments or insurance coverage.

Some possible changes you might want to discuss with members of your health care team:

• Knowledge of cancer, successful treatments and possible side effects that may change through research
• Changes in insurance policies that might affect decisions that you and your health care team will make
• New programs or resources that might be available after you have completed your treatment that weren't available when you started

When should you communicate with your health care team?

The easiest time to communicate with your health care team is during scheduled visits when you can discuss your concerns face to face. Sometimes, however, you may want to discuss things with a member of your health care team in between appointments. If it's a medical emergency, contact your health care team right away. Don't wait for your next scheduled appointment. However, if it's something that can wait, but you want to know before your next scheduled appointment, either schedule an appointment for an earlier date or ask the member of your health care team to call when they have time to discuss your concerns over the phone. You can also write a list of your questions and fax or mail this list to your health care team. They can prepare answers when they have time and then call you to discuss them.

Will you always need to communicate with your health care team?

It is important for both survivors and members of their health care team to recognize that there will always be a need to ask questions and talk over new information, even years after your treatment for cancer ends. This means that new questions and new answers are to be expected. Good communication with your physician and health care team will help you get better care. This begins from the moment of diagnosis throughout the remainder of your life.

How can you communicate with your health care team?

Below is a brief list. For more information, see Suggestions.

• Use the Cancer Survivor's Health Journal to prepare for your next visit with a member of your health care team
• Be active during the visit
• Clarify what the health care team tells you and agree on a treatment plan
• Bring a friend or family member with you
• Learn about the new policies related to HIPAA (the Health Insurance Portability and Accountability Act)
• Use an interpreter when necessary 

This document was produced in collaboration with:
Katherine Walsh-Burke, Ph.D., MSW
Oncology Social Worker

Communicate With Your Health Care Team: Suggestions

Use the Cancer Survivor's Health Journal to prepare for your next visit with a member of your health care team:

• The Cancer Survivor's Health Journal can be found at www.livestrong.org/cancersupport in the  Download Worksheets tab.
• Use the Health Care Team Appointment document to write down everything you want to ask your health care team. You can write notes and questions on the sheet between visits.
• Use the List of Medications to keep track of your medications. Bring this document to the visit along with all of your medication bottles. This lets the team know all the medications you are taking, including vitamins and over-the-counter medications.
• Use the Health Care Team Appointment document to take notes during the visit and to write down your next appointment date.
• Keep all of these documents together in a binder and bring it with you to your visits.
• Bring extra copies of all of these documents with you to give to the health care team. You can also email, fax or mail these documents in before the visit. Having the health care team read your documents may be an easier way for you to communicate.
• You can store pamphlets, medication side effect inserts and important phone numbers in your notebook so that everything is in one place.

Be active during the visit:

• Ask questions. If you don't understand the answer you receive, ask again. If the answer is still not clear, ask the health care team to explain the answer in a different way.
• It is a good idea to practice asking questions before each visit. This may seem a little silly at first, but practicing will help you become more comfortable and confident about asking questions during the health care team visit. You can practice with friends, family, support group members or anyone else that you know. It can help to practice alone by asking the questions out loud.

Repeat what the health care team tells you and agree on a treatment plan:

• Use the Health Care Team Appointment document to take notes during the visit. Repeat any instructions back to the health care team to make sure that all of you understand the treatment plan and agree with the plan. If your health care team asks you to do something you don't agree with, ask them to offer a different option.
• Schedule your next appointment and write down the date and time.

Examples of questions:

• "I'm sorry. I didn't understand what you just said. Would you explain it in a different way?"
• "Would you explain how this medication will help me? Does it cause side effects?"
• "I don't understand the treatment plan. Will you please explain it to me or offer different options?"
• "I've been taking notes during the visit. Let me repeat back what I heard."

Bring a friend or family member with you:

You may find it helpful to bring someone with you to visits.

• This person can help you write down the answers to your questions or other information you receive.
• The person does not need to be a medical expert.
• What is most important is that you feel comfortable with the person and that this person feels comfortable helping you to ask questions.

Find out about the new policies related to HIPAA (the Health Insurance Portability and Accountability Act):

All health care providers are now required to protect the confidentiality of patients they care for, according to the Health Insurance Portability and Accountability Act (HIPAA).

• Some survivors have been concerned that new policies related to HIPAA may make communication with, and among, health care providers more difficult, especially for family members at a distance. This does not need to be the case.
• Your health care provider is required to give you a written explanation of how they are complying with HIPAA and will obtain your signature after you have read the explanation. This gives you a chance to talk with them about any questions you have about who they will communicate with before you give your signature.

If you speak English as a second language, find an interpreter to help you communicate with your health care team:

• Ask your health care provider if they can provide interpreters in your primary language.
• BYou may want to find a friend or family member who can translate for you.
• You may want to tape record the visit and ask someone to translate it or help you understand it when you return home. If you record your visit, you should let the members of your health care team know in order to get their permission.