May, 2006
This TLC Bulletin is sent monthly to our subscribers. Each month we offer Tips for Living and Coping with the challenges of having a brain tumor. Let us know what topics you would like to read about in future TLC columns. We would like to hear from you! In response to our recent TLC survey and in response to informal comments on brain tumor email lists, at conferences and in support groups, this month we will address the topic of communicating with your healthcare team.
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Communicating with Your Healthcare Team
A helpful definition of communication is offered by the National Coalition for Cancer Survivorship in its Cancer Survival Toolbox. “Communicating means letting someone else know clearly what you think and feel and also learning what the other person thinks and feels.” It indicates the importance of being an active participant in this two-way process. Here are some suggestions to help you communicate effectively with your healthcare team.
Ask Questions
For many, the first step in coming to grips with the diagnosis of a brain tumor is to ask questions. Keep a notebook or journal nearby so you can jot down questions in advance of your doctor’s appointment. Bring the notebook with you so you can ask the questions and jot down the doctor’s answers. Others may find it is easier to use a recording device and/or enlist the help of a family member or friend to accompany you. If you want to use a recording device, be sure to ask permission before doing so. Choose the best method for you, so you can make the most of your appointment time. By asking questions you are participating in your health care.
Following diagnosis, your questions may focus on the disease and its treatment. Later, you may have questions regarding your daily activities, nutrition, rehabilitation or medications. At any point in your care, if a topic causes you a concern, it deserves to be addressed. We encourage you to take these questions to your healthcare team. Your doctors and nurses can respond with personalized answers.
Know How You Want Your Information Presented
We all learn differently, therefore it is important to let your doctor or healthcare team know how you want information presented. Does it help to get an overview of all the information at one time, or do you want the information delivered in smaller bits and pieces over time? Do you prefer information in print format, or do you comprehend best by hearing the information spoken to you? Some people may prefer to receive information from a family member who acts as the primary communicator with the physician. Whichever method you prefer, be sure to make your healthcare team aware of it.
Questions to Ask Your Physician
Suggested questions include: How many brain tumor patients do you treat each year? What type of treatment is recommended for me? Is this considered an experimental treatment? Are other options available? If you are seeking a second opinion, ask the second (or third) doctor the same questions.
Our Primer of Brain Tumors offers more questions to help you choose a physician. If you are interested in locating a physician involved in investigational treatment or clinical trials, you can find that information in our Physician Resource List as well.
If you currently have insurance, check with your plan to find a listing of physicians in your network. If you choose to go out-of-network, check to see what you would be required to pay.
Five Key Communication Skills
The Cancer Survivor Toolbox lists the following five skills to help you better communicate. These skills will serve you well as guidelines for communicating with your healthcare team:
- Assert yourself or state positively what you want and need.
- Make “I” statements by saying “I think” or “I feel” instead of saying “you should”.
- Listen actively and check the message. This means listening carefully, showing the other person you are listening, and checking to see if what you heard is what the person meant to say.
- Match verbal with non-verbal communication, that is match your words to your actions and facial expressions.
- Express your feelings by letting others know how you feel as well as what you think.
And remember, good communication does not need to be perfect communication.
The resources listed below may also prove helpful:
Aging With Dignity. A private non-profit organization that publishes the Five Wishes, a living will document that helps a patient define and communicate their medical, emotional and spiritual wishes. To request a copy call 888-594-7437 or visit http://www.agingwithdignity.org/.
Cancer Survival Toolbox. A joint collaboration between the National Coalition for Cancer Survivorship (NCCS), Oncology Nursing Society, Association of Oncology Social Work and Genentech. This set of CDs is a self-learning audio program developed by leading cancer organizations. Its goal is to help you develop practical tools in your daily life as you deal with a cancer diagnosis. Divided into ten different programs ranging from topics such as Communicating and Finding Ways to Pay for Care. The toolbox is available free of charge from the NCCS at 877-622-7937 or http://www.canceradvocacy.org/.
Physician Resource List: Physicians Offering Clinical Trials for Brain Tumors. Provided to those seeking a consultation or second opinion, the listings provide information about physicians involved in clinical trials for both adults and children with brain tumors. Click here to request a copy.
A Primer of Brain Tumors. American Brain Tumor Association. A 68-page Patient’s Reference Manual for learning about the brain and its functions, types of brain tumors, and treatment options. There are also sections about coping with the diagnosis of a brain tumor and how to effectively communicate with your healthcare team. Click here to access online.
What am I Chopped Liver? Communicating With Your Doctor. Starbright Foundation. This video shows teens how to stay actively involved in their treatment by communicating with doctors. Teens listen to other teens describe their experiences and offer tips on how to have a positive impact on your healthcare experience by talking candidly with your doctor. 1998. Available at no charge through the Starbright Foundation at 800-315-2580 or http://www.starbright.org/.
We hope this has offered some helpful insights on the topic of communication. If you have any questions or would like additional suggestions, please call 800-886-2282 and ask for our Social Work department. To access previous TLC’s that you may have missed visit http://www.abta.org/enews.htm.
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