According to a recent study published in Pulmonary Circulation, effective communication between people with pulmonary arterial hypertension (PAH) 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 those with PAH can better connect with their doctors and more effectively manage their condition.
Apart from regular tests to assess disease progression, such as the echocardiogram and the six-minute walk test, Rupp explained that there’s much more to an in-person visit for PAH.
“It certainly helps with clinical assessment,” Rupp 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.”
Rupp recommended people consider bringing a trusted friend or family member along on visits, especially someone involved in their care, 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.”
People with PAH tend to be focused 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 on 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.
Your condition goes beyond test results and progression assessment. Be clear with your pulmonologist, cardiologist, or PAH specialist about which symptoms affect you the most in your daily life, and how. It’s vital to inform your doctor 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.
If you trust your PAH specialist and have confidence in the treatment 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 treatment to feel sure it’s the right option for you.
You may want answers to questions such as:
There’s no such thing as asking too many questions, and there’s no such thing as too much information. Studies show that when people with PAH are well-informed and receive comprehensive guidance, they have better health outcomes. And 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.
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?’”
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 the 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.”
Finally, 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.”
On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 46,000 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? Do you feel more prepared to talk to your doctor about symptom management? Share in the comments below, or start a conversation with others on your Activities page.