Communicate With Your Health Care Team

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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.

Why is it important to communicate with your health care team?

Your health care team is made up of professionals such as doctors, nurses, social workers, psychologists, pharmacists and others who care for your physical and mental health. Each member of your team is specially trained and can help you cope with certain aspects of your life during and after cancer treatment. 

Communicating with your health care team means having the ability to:

• Ask them any questions
• Talk about how you feel
• Tell them about changes in your body
• Discuss your worries and concerns

Members of your health care team may be very busy. It might seem that they do not have time to talk, and your appointments may be brief. However, it is important that both you and the members of your health care team have the time that is needed to address the questions and concerns that the other has. You may need to schedule extra time in advance to allow enough time to address specific questions and concerns.

Preparing in advance for health care visits is a very important part of good communication. If you are able to provide specific information and ask clear questions, you will make the most of your time. This is the best way to ensure that your health care team understands your needs.

Each individual has a unique communication style. What works for one person might not work for another. Find a way in which you are comfortable communicating with your health care team. This can help you feel more confident about the quality of health care that you are receiving.

Who might have trouble communicating with their health care team?

Anyone can have challenges with communication. Talking about your cancer experience may seem especially difficult. Research shows that this is true for cancer survivors of all education levels and backgrounds. However, some people have more difficulty than others. For example, cultural differences may present unique challenges. Some survivors come from backgrounds that have a very deep respect for authority and medical providers. This may make it difficult for them share concerns or talk about very personal issues. It might also seem to be disrespectful to ask questions of their health care team. 

Survivors who speak a language that is different language from the one spoken by the 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, some people are simply not comfortable speaking up and asking questions. It may take effort to learn to do this. With time and practice, it will get easier.

Good communication is also very important for survivors who have a hearing loss. Others may have memory or concentration problems and need someone to be with them during appointments to take notes.

It may be necessary to request an interpreter or to bring an adult family member or friend to medical appointments. This can help to ensure that important information is shared and understood by all parties. If an interpreter is needed, ask your health care team for help getting one. Some medical facilities have interpreters who work as staff members. It is not a good idea to have a very young child serve in this role because children may not understand important components of what is being said.

Sometimes personalities and communication styles of the survivor and a member of the health care team are not a good fit. If this happens to you, try to talk with the health care provider about your concerns.  There may be ways to improve communication. If you try, but find that efforts to work together are not getting better, it is your right to request a different medical provider.

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

If you experience any of the following, you may need to find ways to better communication with your health care team:

• When you leave the doctor’s office, you still have questions or concerns that were not answered.
• It appears to you or your family that there is never enough time to discuss questions or concerns with members of your health care team.
• You think that health care team members may not be open to discussing your questions, concerns or problems.

If one member of the health care team cannot answer a question, other members of your team may be able to help. If you cannot get the help you need, you might consider getting another opinion or changing medical professionals.

Sometimes a member of the health care team might suggest getting a second opinion. You could be directed to another provider that may be better able to answer certain types of questions or meet specific needs. If this happens to you, it does not mean that your health care provider does not care about you or your situation. It usually means that they want to make certain that you get the best possible answer from a professional who specializes in that area.

How can good communication with your health care team benefit you?

You may not be familiar with certain medical terms or know anything about the types of medicines that your health care team prescribes. Asking questions may be one of the best ways to learn about taking care of your health during and after cancer. Open communication with your health care team can also help you to be aware of new developments in care and treatments.

Ask your team about:

• Information related to treatments and possible side effects
• Insurance and benefit coverage that could affect health care choices
• New cancer support programs and resources

Good communication with your health care team can help you:

• Find out about current information related to your cancer and treatment
• Participate in decisions about your medical care
• Better manage your symptoms and get quality 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

What is the best time to communicate with your health care team?

The most convenient time to communicate with your health care team is during scheduled appointments. This allows you to discuss your concerns in person. However, there may be times in between appointments when you need to talk. Ask your doctor what to do if this happens.

If your concerns are not urgent, but you do not want to wait until the next scheduled appointment, ask to have a health care team member call you. In many cases, this may be a nurse who will decide whether you need to also speak with the doctor. You can also write up a list of questions to fax, email or mail to your health care team. They can then prepare a response when they have time and call or email you to discuss it further.

If you have a medical emergency, contact your hospital emergency room and your health care team right away. Do not try to wait until your next scheduled appointment. 

It is important for both survivors and members of their health care team to recognize that there may always be a need to ask questions and talk over new information. This can occur even years after your treatment for cancer ends. Good communication begins from the moment of diagnosis and should continue beyond completion of cancer treatment.

This document was produced in collaboration with:

Katherine Walsh-Burke, Ph.D., MSW
Oncology Social Worker

Works Cited

National Coalition for Cancer Survivorship (1999) Cancer Survival Toolbox: Module 2, Communicating

Marcusen, C., & Walsh-Burke, K. (1998). Self-advocacy training. Coping, September/October.

Office for Civil Rights – HIPAA, Medical Privacy - National Standards to Protect the Privacy of Personal Health Information. U.S. Department of Health and Human Services; http://www.hhs.gov/ocr/hipaa 

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Communicate With Your Health Care Team: Suggestions

The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. 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 Additional Resources document for links to more resources.

Be organized and prepared for health care appointments.

• Keep track of your medications. Bring a list of your medications (both prescribed and over-the-counter) to your appointments. The list should include dates taken, doses and any side effects or reactions noted. You may also want to bring all of your medication bottles. This helps your health care team to stay informed of all the medications you are taking. Also, report vitamins, herbs and food supplements because some may affect your cancer treatment.
•  Take notes during appointments. Write down the date and time of your next appointment.
•  Bring extra copies of important documents to give to the health care team for your file. You can also email, fax or mail these documents in before the visit. Allowing the health care team to read the documents may help you to communicate.
• Store pamphlets, medication and side effect inserts, and important papers and phone numbers in one place such as a file, notebook or box.

Be active during the health care appointments.

Ask questions. If you do not understand the answers you receive, ask again. If the answer is still not clear, ask the health care team to explain it to you in a different way.

It may be helpful to practice asking questions before each health care appointment. This can help you become more comfortable and help you to clarify what you need to know.

For example:

• “I’m sorry, but I did not understand all that you just said. Would you mind explaining it again?”
• “Would you explain how this medication will help me? Can it cause side effects?”
• “I don’t really understand the treatment plan. Can we please discuss the plan and my options?”
• “I’ve been taking notes during the visit. Can I read back to you what I heard to be certain I understood everything?”

Consider bringing a friend or family member with you. 

A friend or loved one can write down the information you receive and help you ask questions. This person does not need to be a medical expert. Most importantly, you need to feel comfortable that he or she will be supportive and help you get the support and information you need. If there is no one to who can go with you, ask your doctor if you can tape record the meeting to be certain that you are able to remember all that you were told to do.

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

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).

• Your health care provider is required to give you a written explanation of how they are complying with HIPAA.
• The provider will need to 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 want a loved one to be able to discuss your cancer and treatment with your health care provider, be certain that you specify that person’s name on the HIPAA form.

If you need an interpreter to help you communicate with your health care provider, ask that one be provided.

Sometimes an adult friend or family member can translate for you. Avoid having a child try to serve as an interpreter as it is likely that s/he will not understand everything the doctor is trying to explain. If needed, ask your health care provider to bring in an interpreter for your medical appointments.

If you have trouble understanding all that was said during appointments, ask if you can tape record the visit. You can then listen to it when you return home. If you do want to record your visit, discuss this with the members of your health care team in advance.

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Communicate With Your Health Care Team: Additional Resources

The resources listed below provide more detailed information and support services to help you communicate with your health care team.  Please read the Detailed Information and Suggestions document for more information and questions to ask.

LIVESTRONG SurvivorCare Program
www.livestrong.org/survivorcare

LIVESTRONG SurvivorCare offers assistance to anyone affected by cancer, including the person diagnosed, loved ones, caregivers and friends. The program provides information about treatment options and matching to clinical trials or treatments in development. Counseling services and assistance with financial, employment and insurance issues are also available. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations including CancerCare, Patient Advocate Foundation and EmergingMed.

American Cancer Society (ACS)
www.cancer.org

The American Cancer Society (ACS) offers information about many of the challenges of cancer and survivorship. You can search for information by cancer type or by topic. ACS provides a list of support groups in your area. You can join online groups and message boards. Some information on the website is available in Spanish, Chinese, Korean and Vietnamese. ACS specialists can answer questions 24 hours a day by phone or email.

National Coalition for Cancer Survivorship (NCCS)
www.canceradvocacy.org

The NCCS website provides comprehensive information on a wide range of cancer topics. These include managing the side effects of cancer treatment, controlling pain, understanding clinical trials, maintaining good nutrition and exercise habits, getting the most out of your health insurance coverage and addressing employment issues. The NCCS also offers the Cancer Survival Toolbox, a free audio program created to help people develop skills to help with communicating, decision making, problem solving, finding information, negotiating, and standing up for your rights. They also offer a variety of publications that can be ordered free of charge. Information on the NCCS website is available in Spanish, and the Cancer Survival Toolbox is available in both Spanish and Chinese.

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