From "Me" To "We:" Communicating with Your Medical Team

When you are dealing with an illness like PH, it is important to talk often and comfortably with your healthcare team. SPEAK UP to help the team understand your needs and discuss options; the PH team does not know what you are experiencing or what questions you have until you tell them. Empowered patients allow the PH team to partner with them in their care and know that taking charge of their health is an ongoing process. The following tips will make it easier for you and your team to cover everything you need to talk about during your appointments.

List and Prioritize Your Concerns: If you have several items, put them in order and group similar topics together. Don't put off the things that are really on your mind - bring them up right away!

Bring Information with You: Some PH teams suggest bringing all medications and supplements to your appointment. Others recommend you bring a list of everything you take. Find out your team's preference and try to meet their request. Have copies of your medical records, a current medication list, PH history, other recent health history and immunizations and remember to update them regularly. Don't forget to bring your insurance information and medical ID numbers, including contact names and phone numbers.

A helpful resource for managing this information is PHA's Empowered Patient Toolkit.

Consider Bringing a Family Member or Friend: Let your family member or friend know in advance what you want from them at your visit. Your companion can remind you what you planned to discuss with the doctor if you forget, take notes for you and help you remember what the doctor said.

Plan to Update the Team: Be honest with your healthcare team when you answer their questions. Provide points of reference; keep a journal or calendar of symptoms and issues and note the impact on your daily activities and what makes symptoms better or worse. If family or friends are with you, be sure to include them in the conversation and ask them to provide examples.

Your team may ask you how your life is going, as this may be useful medically. It's okay to ask family and friends to leave the room so you have some time alone to talk to your team. Let the doctor know about any major changes or stresses in your life, but don't forget to talk about the good things as well!

Ask Questions: If you don't ask questions, your team may assume you already know the answer or that you don't want more information. If you don't understand something, say so. You should not leave until you comprehend what is being communicated. If you have a family member or friend who helps you take medicine, make sure to sign a release and ask the team to talk to him or her. If you have a power of attorney and/or healthcare directive, carry a copy with your medical records and update them as appropriate.

When it comes to your treatment, instructions from your team are important. Tell them what you think the instructions are and let them know if they need to write them down. Ask about different treatment options. You will benefit most from a treatment when you know what is happening and are involved in making the decisions. Make sure you understand what your treatment involves and what it will or will not do. Ask for prescriptions to be renewed at your appointments. If you need to call your team for a prescription renewal, try to give them at least two weeks' notice.

Know when to call your team and when to head for the emergency room. Does your team want you to call with a 2-3 lb. weight gain over two days? What are your team's specific instructions related to the PH therapy you are on? If you wonder if your question is one you should ask your team, please call; they are there to help you and can talk through any issues you are having.

If You Go to the Emergency Room: Make sure to bring your prepared collection of medical information and contacts. While in the emergency room, ask questions if you don't understand tests or procedures that are being done. Make sure to notify your PH team on your way to the hospital even if your visit is not PH-related and contact them with an update after your visit.

Keep Contact Information Accessible: Always have your center's phone number available in your phone under DOCTOR, on your medical alert bracelet and in your medication box. Have a list of important phone numbers and an up-to-date medication list on your refrigerator; this is usually the first place EMS will look for it.

Always remember that you are your own best advocate. Communicating openly and honestly with your PH team is essential to your PH journey.

This article first appeared in Pathlight, Winter 2013. Written by Louise Durst, RN, Research Nurse and Study Coordinator, Mayo Clinic Medical Center, Rochester, Minn.

To review Conflict of Interest Disclosures for PHA's medical leadership, visit: Disclosures
 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.