Communicate With Your Health Care Team
Detailed Information
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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
| Email: |
Send email through the LIVESTRONG website. |
| Phone: |
1-866-673-7205
1-866-927-7205 (Spanish) |
|
Intake Coordinator is available for calls Monday through Friday, 9:00 a.m. to 5:00 p.m. (Central Time). Voicemail is available after hours. |
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
| Email: |
Submit questions in English or Spanish from the “Contact Us” page. |
| Phone: |
1-800-227-2345 |
|
TTY for deaf or hard of hearing callers: 1-866-228-4327 |
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
| Email: |
info@canceradvocacy.org |
| Phone: |
1-877- 622-7937 |
|
An information specialist is available from 8:30 a.m. to 5:30 p.m. (EST). |
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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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. If you don't tell your health care team your concerns or don't ask your questions, they will not know what your concerns are.
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.
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.
Many survivors do not prepare for their health care team visits. They may forget important questions or concerns if they don't write them down before the visit.
You might 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.
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.
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, you might need to change medical professionals.
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 changes 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
- Repeat what the health care team tells you and agree on a treatment plan
- Bring a friend or family member with you
- Find out about the new policies related to HIPAA (the Health Insurance Portability and Accountability Act)
- If you speak English as a second language, find an interpreter to help you communicate with your health care team
This document was produced in collaboration with:
Katherine Walsh-Burke, Ph.D., MSW
Oncology Social Worker
Works Cited
National Coalition for Cancer Survivorship. Cancer Survival Toolbox: Module 2, Communicating. 1999.
Marcusen, C., & Walsh-Burke, K. "Self-advocacy training." Coping (1998): September/October.
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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 in the Survivorship Tools area of My Survivorship. You will need to create a free membership in order to access the Cancer Survivor's Health Journal.
- 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 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 (known as 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 a member of your health care them if s/he can provide interpreters in your primary language.
- Bring a friend or family member who can translate for you.
- 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.
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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.
Click a resource for more information:
LIVESTRONG SurvivorCare Program
www.livestrong.org/survivorcare
| Email: |
Send email through the Web site. |
| Phone: |
1-866-235-7205 |
| |
Case managers take calls Monday through Friday, 9:00 a.m. to 5:00 p.m. (EST). Voicemail is available after hours. |
LIVESTRONG SurvivorCare offers assistance to all cancer survivors, including the person diagnosed, caregivers, family and friends. The program provides education, information about treatment options and new treatments in development, counseling services and assistance with financial, employment or insurance issues. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations, including CancerCare, Patient Advocate Foundation and EmergingMed.
The LIVESTRONG Survivorship Notebook is a tool that can help you organize and guide your cancer experience. The portable, three-ring binder contains a variety of information covering a full range of physical, emotional and practical survivorship topics. You may order a free LIVESTRONG Survivorship Notebook at www.livestrong.org/notebook. Shipping and handling charges will apply.
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MEDLINEplus: Health Information
http://medlineplus.gov
| Email: |
Send email through the Web site. |
| Phone: |
1-888-FIND NLM (1-888-346-3656) |
| |
Calls are answered Monday-Wednesday and Friday, 8:30 a.m. to 5:00 p.m. (EST), and Thursday, 8:30 a.m. to 9:00 p.m. (EST). |
MEDLINEplus has articles on many physical conditions, including cancer, and provides links to other sites and organizations that have health care information. Several articles focus on communicating with your health care team. The site also includes a database of drug information and an illustrated medical encyclopedia. Information on the site is also available in Spanish.
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National Coalition for Cancer Survivorship (NCCS)
www.canceradvocacy.org
| Email: |
info@canceradvocacy.org |
| Phone: |
1-877-NCCS-YES (1-877-622-7937) |
| |
An information specialist is available from 8:30 a.m. to 5:30 p.m. (EST). |
The NCCS Web site provides comprehensive information on a wide range of cancer topics, including 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. In addition, you can browse the Resource Guide for resources grouped by cancer type, by topic and by service. NCCS also offers the Cancer Survival Toolbox®, a free audio program created to help people develop important skills to better meet and understand the challenges of their illness. The Toolbox offers information on communicating, decision making, problem solving, finding information, negotiating, and standing up for your rights for those living with, through, and beyond cancer. NCCS also offers a variety of publications that can be ordered free of charge. Information on the NCCS Web site is available in Spanish, and the Cancer Survival Toolbox is available in both Spanish and Chinese.
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American Cancer Society
www.cancer.org
| Email: |
Questions can be submitted in English or Spanish from the "Contact Us" page. |
| Phone: |
1-800-ACS-2345 (1-800-227-2345) |
| |
TTY for deaf or hard of hearing callers: 1-866-228-4327 |
| |
English-speaking information specialists are available 24 hours a day. Spanish-speaking information specialists are available Monday-Friday, 6:30 a.m. to 7:00 p.m. (CST). You can leave a message in English or Spanish 24 hours a day. |
The American Cancer Society Web site contains 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, or you can join online groups and message boards. Some information on the Web site is available in Spanish, Chinese, Korean and Vietnamese. Information specialists can answer questions 24 hours a day by phone or email.
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OncoLink
www.oncolink.org
| Email: |
Send email through the Web site. |
OncoLink is a multimedia cancer resource provided by the Abramson Cancer Center of the University of Pennsylvania. Patients and physicians can get information about all types of cancer, news about research advances, and updates on cancer treatment. The Web site includes a clinical trial matching service, answers to frequently asked questions, or you can email experts with your own personal questions. OncoLink is also available in Spanish.
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myPHR.com (Personal Health Record)
www.myphr.com
The American Health Information Management Association provides myPHR.com as a free public education service to help you better understand and manage your personal health information. The Web site includes an explanation of your health information rights, information on how to obtain, access, and maintain copies of your health records, and lists all of the important information your personal health record should contain.
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