Strategies for Impactful Conversations

‍You have probably heard before that it’s helpful to write your questions down before your doctor’s appointments and bring a notepad so that you can write down answers to your questions and things you want to remember. Bringing a friend or family member to your appointments who can listen closely and advocate for you can also be helpful. But there are also specific dialogue techniques that can help you get the most out of your visits.

Try some of the following techniques during your next doctor’s appointment to help you participate in the conversation effectively and leave the visit feeling as informed and confident as possible.

• Share your agenda early in the visit, including voicing your concerns and topics you want to discuss, rather than waiting until the end to bring them up.
• Become an active listener in the conversation, asking follow-up questions as they arise and letting your doctor know if there is something you don’t understand in order to gain a better understanding of your doctor’s responses.
• When voicing your concerns and asking and answering questions, be completely honest and don’t hold back in fear of being needy or feeling like you’re complaining. Speak up and don’t be shy – this is your health! Ask all of your questions and take the time you need to feel satisfied with the conversation. Don’t worry about being “polite.”
• If you are still feeling like you don’t have enough time with your doctor, ask to schedule your next appointment for a longer duration. 
• You and your doctor are partners in your care. Remember that you should strive to make treatment decisions together, but that you are your #1 advocate and it’s up to you to speak up if you agree or disagree on the course of action.
  

Example Questions to Prompt Productive Discussions

Understanding that living with Wilson disease can be a confusing and difficult journey, our goal is to provide questions that you or a caregiver can share with your doctor in order to receive the support you need and feel heard. These questions are a good starting point to uncover what you need to know about your Wilson disease and to find out how you can best manage your treatments, symptoms and care.

Treatment Goals

• What do you see as my goals for treatment?
• What does successful treatment look like? Unsuccessful?
• How often should I have my copper levels monitored?
• Are there any other benchmarks we can measure to monitor my disease progression and its impact on my quality of life?
• Are there tools I can use to measure how I am doing between doctor visits?
• What do I do if my symptoms worsen, or if they begin to take a greater toll on my life? How do I inform you about this?
  

Associated Symptoms and Treatment Side Effects

• Aside from its effects on my liver function, what other symptoms might I face from Wilson disease? How might these have an impact on my life?
• Are there any potential side effects that might result from my treatment plan?

My Care Team

• Aside from you, who else should be in my care team? (hepatologist, neurologist, dietitian, speech pathologist, genetic counselor, mental health professional, etc.)
• Do you have healthcare provider referrals to share with me?
• How can we make sure that the care team is sharing my health information and working collaboratively toward my treatment goals? 
• Who should be the leader of the care team?
• How often should I meet with you and others in my care team?

Diet

• There is some conflicting information about what foods to avoid and what foods to eat in moderation for Wilson disease patients. In your opinion, what foods should I avoid and what foods are acceptable in moderation?
• Are there dietary supplements or vitamins I should be taking to supplement my food intake?
• What is a safe level of copper in drinking water?

Insurance and Access

• Will my health insurance cover my treatment? If not, can you help me secure access? Are there any discount programs?
• Can I qualify for life insurance if I have Wilson disease?
• What kind of questions will insurance companies ask me?