According to a 2021 study published in Pulmonary Circulation, effective communication between people with pulmonary arterial hypertension and their health care providers can improve health outcomes. Unfortunately, the article explains, PAH specialists and their patients tend to use such different terms to discuss the condition that effective communication becomes a challenging goal. Most of the time, PAH specialists and people with PAH don’t even agree on what constitutes effective communication.

Allyson Rupp, a licensed clinical social worker who works with adults with PH at Stanford Medicine’s Vera Moulton Wall Center for Pulmonary Vascular Disease, spoke with myPHteam about how people with PAH can work with their doctors to get what they need.

The Power of In-Person Visits

An in-person visit for PAH involves much more than regular tests to assess disease progression, such as the echocardiogram and the six-minute walk test, Rupp explained.

“It certainly helps with clinical assessment,” she said. “Our observation of people’s shortness of breath can be very different in person than over the phone or a video visit. If someone’s condition is worsening, an in-person visit provides the option for quick admission to the hospital, which sometimes is necessary. Patients need the personal attention of a multifaceted team to see what’s going on in different aspects of their condition and their life.”

A Second Voice and a Second Pair of Ears

Rupp recommended that people consider bringing a trusted friend or family member — ideally, someone involved in their care — along on visits, whether virtually or in person.

“It’s helpful to have a second voice and a second set of ears to hear and to be heard,” Rupp explained. “Whether they’re a neutral note taker, a reminder of things that you’ve forgotten to bring up, or an advocate for what’s really bothering you but that you don’t want to tell your doctor — especially if it’s someone who’s been observing you closely and sees you as you actually are, not as you present yourself to be.”

Talk So Your Doctor Will Listen

People with PAH tend to focus on improving their quality of life, coping more effectively with daily functions, and minimizing the burdens of PAH treatment. On the other hand, their health care providers tend to focus on functional improvement seen in test results, slowing the progression of PAH, and extending life expectancy. These goals are not mutually exclusive, but the differences in language can leave people with PAH feeling as if their concerns are not heard.

With a few changes in the way you talk to your doctor, you can improve the effectiveness of your communication. Here are some examples of ways to respond to your doctor that will help you get the most out of your conversations.

Doctor: How are you doing?

You: Here’s how I’m feeling.

Your condition goes beyond test results and progression assessment. Be clear with your pulmonologist, cardiologist, or PAH specialist about which — and how — symptoms affect you the most in your daily life. It’s vital to inform your doctor about how PAH symptoms affect your mental health and social life, as well as your functional physical abilities. Ask whether there are better ways to manage these symptoms.

Doctor: This is the best treatment.

You: Why is it the best treatment for me?

If you trust your PAH specialist and have confidence in the therapies they prescribe, you’re more likely to keep on track with medications, which is vital to effective treatment of PAH. Ask them anything you need to know about a particular treatment so that you feel sure it’s the right option for you.

You might want answers to questions such as:

• How often does this medication work for people?
• Which PAH symptoms will this medication improve?
• When can I expect to start feeling better?
• What side effects might I experience, and how can I manage them?
• How difficult will it be to take this medication?
• Can we schedule a follow-up to check in about how this new treatment is going?

Doctor: Do you have any more questions?

You: Yes!

You shouldn’t hesitate to ask any questions you have about your PAH or treatment. If there’s not enough time during your appointment to address all your questions, you and your doctor can decide if you should schedule a follow-up appointment for more discussion or if you can message your doctor using the clinic’s app or email system. Studies show that when people with PAH are well informed and receive comprehensive guidance, they have better health outcomes. Even those with PAH who report being satisfied with the information they get from their doctors still want more information and more opportunities to discuss their condition.

Advocating for Yourself

It’s essential to advocate for yourself in any health care setting, but this is especially true if you belong to a racial or ethnic minority group and have PAH.

Studies show that compared to other racial groups, African Americans are more likely to be diagnosed with connective tissue disease-associated PAH. Although the exact reason for this finding is unknown, African Americans are at increased risk of other medical conditions linked with PAH, like scleroderma (a connective tissue disorder), liver disease, high blood pressure, and heart disease.

It’s also well documented that racial disparities exist in health care settings. It is an unfair reality, but if you belong to a racial or ethnic minority group, getting what you need for PAH may take extra work. If you ever feel that your doctor isn’t listening to you, trying to understand you, or prioritizing you, find a new specialist or seek a second opinion.

Hearing Your Doctor Out

Equally important, Rupp told myPHteam, is hearing your doctor out and making sure you have all the information before making a decision.

“When you have a condition like PAH, a doctor visit can be very overwhelming,” she acknowledged. “You may fear hearing things you don’t want to hear. It’s important not to make a decision before the doctor gives you the facts. Sometimes, in the moment, we’re in crisis and we hear three words of the conversation, then everything else gets lost. Go in with an open mind. Hear what they have to say, and ask, “Where should I research this information further?”

Shared Decision-Making

In shared decision-making, the person with PAH makes treatment decisions in collaboration with their PAH specialist and other members of the care team. The care team provides in-depth information about the pros and cons of treatment options, but it is up to the person with PAH to inform the care team about their personal values and priorities.

Rupp recommends asking your PAH specialist and care team to set some expectations early on, as well as clarifying your own expectations for therapy. “You should feel empowered to outline what’s important to you as a patient and see how that matches the provider,” she said. “Let your physicians know what’s practical for you, what works within your life. Obviously, those things change over time, and treatment planning evolves.”

The Power To Say No

Rupp pointed out that ultimately, treatment decisions are up to people with PAH. “I remind patients that they can refuse anything we offer, and they can request things that they haven’t been offered and we’ll discuss them,” she explained. “When we all decide it’s time for the next step, we’ll discuss what can be accomplished with a new therapy and what are the chances of reaching that goal.”

How can you better manage PAH symptoms? Take this quiz to find out.

Talk With Others Who Understand

On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 48,000 members come together to ask questions, give advice, and share their stories with those who understand life with PH.

Do you have trouble communicating with your PAH specialist? How do you work with your doctor to get what you need for PAH? Share in the comments below, or start a conversation with others on your Activities page.