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Positive self-advocacy for female-centered care

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Focus, knowledge and persistence — these are traits women often need to get the heart health care they require in a timely and respectful manner.

“It’s true that women have delays in diagnosis and treatment,” says Sharonne N. Hayes, M.D., founder of the Women’s Heart Clinic, at Mayo Clinic. “But regardless of the challenges a woman faces in getting the heart health care she needs, it’s important that she works with her health team in a constructive way. In a good patient-clinician relationship you should feel empowered and comfortable — even encouraged — to tell your story, speak your mind, ask questions that are important to you, and be confident that you are respected, heard and get answers that you understand. The best relationships come when doctors welcome your active engagement in every step of your care. So, while your doctor may not be perfect — we’re all human — seeking a true partnership and collaboration with your doctors and the rest of your healthcare team should be the goal.” 

4 steps to better heart health care

If you’re dealing with possible cardiovascular health concerns, have been diagnosed with cardiovascular disease, or are recovering from a heart attack, stroke or cardiac surgery, here are four steps to take to make sure you get the heart health care you need and deserve.

  1. Pay attention to what your body is telling you
  2. Make sure your doctor listens to you
  3. Ask questions about your treatment — and then ask more questions
  4. Enlist support from friends, family and women’s heart-health groups

This may seem like a lot to take on, but here’s why it matters. According to the National Heart, Lung, and Blood Institute, compared with men, all women are:

  • Less likely to be referred for diagnostic tests for heart disease
  • More likely to experience delays receiving an initial electrocardiogram (ECG) heart test
  • Less likely to receive care from a heart specialist during hospitalization
  • Less likely to receive certain types of therapy and medicines, even those recommended by cardiologist guidelines
  • When younger, more likely to be misdiagnosed and sent home from the emergency department when having a heart attack

In addition, a nationwide survey representing 11 million women with heart and blood vessel diseases found that compared with men, women report significant disparities in patient-provider communication and the overall care they receive. According to the Johns Hopkins researchers, “many women say the root problem is that health care providers do not listen to or respect them.”

Why do these differences exist between men and women?

“There are many factors that contribute,” says Dr. Hayes. “Women have been shown to have a greater number of symptoms compared to men when they come in with a heart attack. It may legitimately take a bit longer to rule out cardiac causes in women — but we are usually talking a difference of a few minutes.  Another factor may be patient and health care provider conscious and unconscious biases about what a heart patient ‘looks like.’ When a woman comes into a medical setting — even with classic cardiovascular symptoms — appropriate diagnostic tests may either be delayed or not performed because it doesn’t occur to anybody that she may have heart disease. In addition, women may not be aware that the symptoms they are experiencing could be due to cardiovascular disease — or women may even ignore or minimize symptoms, attributing them to aging or menopause. More than once, I’ve had a patient tell me they delayed going in because ‘I didn’t have time to have a heart attack!'”

Clearly, if you want good care, you have to be a good self-advocate or have someone with you who will advocate for you (because sometimes you just can’t).

1: Pay attention to what your body is telling you

You may be conditioned to ignore your stresses and pains and focus on taking care of others. You may simply not want to believe that anything is wrong with you. As a result, you may not recognize when a symptom such as chest pain, fatigue, shortness of breath, leg pain, nausea, dizziness or cognition problems could be a signal of cardiovascular disease, heart attack or stroke. One study based on interviews with women age 55 and younger who had been hospitalized after a heart attack found that many of them had had trouble recognizing symptoms of a heart attack while they were happening. Others said that although they recognized that the symptoms might signal a heart attack, they didn’t want to say anything because they feared they were overreacting or that they would be told they were simply hypochondriacs. Such concerns interfere with getting needed medical attention.

Follow your instincts and suspicions. Call your health care provider if you have worrisome nonurgent symptoms — such as changes in breathing, chronic fatigue, swollen ankles or leg tenderness — that you want evaluated. If your doctor cannot see you in a timely manner, explore other options, such as making an appointment with another doctor. Always call for emergency medical help (911 in most places in the United States) if you are having acute symptoms, such as difficulty breathing, chest or upper belly pain or pressure lasting two minutes or more, changes in vision, fainting or dizziness, sudden severe pain, severe or persistent nausea, or vomiting.

Yes, it’s possible that these symptoms could be a sign of something other than a heart attack or stroke — maybe a panic attack or heartburn (also called gastroesophageal reflux disease or GERD). But when symptoms are similar and overlapping, not even a doctor can definitively tell the difference between various problems without appropriate medical testing. It’s better to get an accurate diagnosis than to ignore a potentially life-threatening heart attack, stroke or other cardiovascular problem.

Heart to Heart — Recognizing your symptoms for what they are

“I survived a heart attack in 2018,” says Susan Smith, a WomenHeart Champion. “Despite having all the warning signs, I made excuses for them because I did not want to go to the emergency room. I self-diagnosed my discomfort as an anxiety attack. Big mistake!

“After I nearly died from that heart attack, I wanted to shout from the rooftops, ‘Don’t do what I did!’ I had stopped taking care of myself because I was so busy taking care of everyone else. While I was busy doing good for others, my own physical needs went unattended. I learned firsthand: You can’t help others if you die of a heart attack. So don’t let anything stop you from going to the emergency room if you have symptoms.”

2: Make sure your doctor listens to you

Super-short appointment times, health care provider bias — both conscious and unconscious — and women’s reluctance to “cause trouble,” all contribute to the difficulties women can face in communicating with their doctors. “Yes, it is important for you to listen to your body, but it’s even more important that you find a doctor who not only listens to you, but also hears what is important to you, especially when it comes to heart care,” says Dr. Hayes.

One survey found that people who were hospitalized were only able to talk for 12 seconds before being interrupted by a resident, and in a visit that lasted only 11 minutes, they got to speak for only four minutes. It’s often not much better in a doctor’s office.

The most effective way to make sure your concerns are heard and responded to is to write out an agenda before you go. Jot down the symptoms you want to ask about. When your health care provider enters the examination room, you can start the conversation about your health by reading off the symptoms. A sample script is below:

“I have several concerns that I want to discuss with you today: the fact that I am gaining weight, that I am short of breath with even a small amount of exertion and that I am really tired a lot of the time. I would like to explore possible causes and get evaluated to make sure the symptoms are not caused by anything serious.”

3: Ask questions about your treatment — and then ask more questions

WomenHeart suggests that you take control of your cardiovascular care by writing down a series of questions that you have about diagnosis, treatment options, medications, surgical and minimally invasive procedures, and screenings.

Tell the doctor that you have some very specific questions about your diagnosis or treatment plan that you need answered. You also want to talk about whether the treatments or diagnostic tests have been shown to safe, accurate and effective in women, since even these days most participants in the research on cardiovascular conditions are men. Then ask, and listen…

Is your question skipped over? Not answered in a way that you understand? Take a deep breath, ask again and communicate your concerns. Clarifying statements that may help include:

  • Can you provide more detail on my diagnosis and help me better understand what is happening inside my body?
  • What makes you confident that the diagnosis is correct?
  • You went through that list of treatment options very quickly, can you slow it down and walk me through this step by step?
  • Can we revisit the downsides of these therapy options, and maybe write out a pros and cons list?
  • I appreciate your detail on the medical options. Can you help me understand how this will impact my day-to-day life?

For a complete list of targeted questions on all aspects of cardiac care, check out WomenHeart’s information on Questions for Your Doctor.

After you ask for specific information, if you still feel you are being ignored or misdiagnosed, ask for a second opinion from another doctor or cardiologist. Make sure your doctor is the expert you want on your team.

Heart to Heart — It’s worth the effort to find a doctor who listens to you

Mary Anne Norling with Dr. Hayes

Mary Anne Norling has a long history of heart-related issues, including preeclampsia when she was pregnant at 23 and a stroke 2.5 years later. Then, in her 50s, when she was living an active, healthy lifestyle, she suddenly saw her cholesterol rise to around 300 despite being on a cholesterol-lowering statin medication — and she started having arm pain during exertion. Her internist suggested she get a full cardiology work-up.

“Even with all my background of high cholesterol, preeclampsia, history of a stroke — and after the stress echo work-up — I was told there was nothing wrong with me,” Norling says. Just four months later, while vacationing near Lake Tahoe with her family, Norling had a heart attack at age 57.

After her recovery she set out to find a cardiologist she could work with — and who would pay attention to what she had to say. “It’s not uncommon that women with heart issues have to see two or three cardiologists until they find somebody who will listen to them,” Norling says. “Well, I’m on my third cardiologist. Thank heavens I kept looking. He’s wonderful.”

4: Enlist support from friends, family and women’s heart-health groups

The heart longs for connection and support — and not just metaphorically. Research shows that women who have support from family and friends and who reach out to support services such as WomenHeart live healthier, happier lives as they contend with and recover from cardiovascular disease. Support can come in different varieties, including:

  • Support at appointments — If you can enlist a family member or friend to go with you to your doctor’s appointments, there’s a better chance that you’ll get answers to your questions. Share the list of questions you write out so your family member or friend can ask the doctor what you don’t. It’s also smart for you — and the person who goes with you — to take notes that you can refer to later. One study found that most patients forget 40% to 80% of what a doctor says as soon as they leave the office.
  • Support day to day — It can be hard to ask for help, but those who care about you want to pitch in. They may need you to tell them just how they can best do that, however. So speak up. For example:

“I feel too weak to drive to the grocery store. Could you take me?”

Or

“May I come to your house for dinner? I need some company.”

Or

“I feel scared and emotionally down. Can we talk?”

  • Support online — Sometimes you need to talk with people who are dealing with the same kind of medical challenges that you’re facing. Their shared successes, worries, frustrations and hopes can empower your recovery and teach you smart ways to manage your condition. WomenHeart Champion Jody Knack created a Facebook group called We Are Heart Sisters that started with 83 WomenHeart Champions and has grown to over 700. It supports women from all over the United States and the world. And WomenHeart.org offers a range of resources and opportunities to interact with other women with heart disease. Reach out.

 

Heart to Heart — Creating community support

WomenHeart Champion Darlene Scott doesn’t let heart disease define her. The former marathoner keeps moving forward, one foot in front of the other. And she wants other women of color to do the same.

She uses her role as a WomenHeart Champion to encourage women in the African American community to learn about their risk factors for heart disease. “We have to become more aware of the signs and symptoms of heart disease. Women of color are disproportionately affected by the disease and often don’t know what to look for.”

Sometimes, heart disease symptoms are mistaken for something else — which is what happened to her.

“I was training for a marathon in 2016 and noticed I was experiencing shortness of breath and fatigue. It felt different from a normal training. I thought it was my allergies.”

Eventually she learned it wasn’t. She had an enlarged heart, also known as cardiomyopathy. Within a year, she had an implanted pacemaker and was also diagnosed with sarcoidosis, an autoimmune disease.

These days she is part of a supportive group of women who share their heartfelt stories. She encourages women in the African American community to learn about their heart disease risks and the challenges of getting optimal care. “I felt like I didn’t have anyone to talk to after being diagnosed. Not anymore!”

Sharonne N. Hayes, M.D.

Dr. Hayes is a cardiologist and Professor of Cardiovascular Medicine at Mayo Clinic. She has over 25 years of experience in treating complex heart and blood vessel conditions, especially those that uniquely or disproportionately affect women. She founded and practices in the Women’s Heart Clinic and has diverse research interests that include sex and gender-based cardiology, spontaneous coronary artery dissection (SCAD), health equity, and the utility and optimal role of social media in clinical practice, medical research and health education.

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