Have you ever been in a medical situation where you wish you’d known how to advocate for yourself? Speak up? Be heard? This is why patient empowerment is so important.
As women, many of us have stories we could tell about moments when we wished we’d spoken up for ourselves in doctor’s offices and in hospitals. But what if you don’t know how?
In this article, Aisha Stith, mama extraordinaire to three beautiful children, returns to a topic close to her heart (and to our hearts here at Undefining Motherhood!): the benefits of patient empowerment for Black mothers.
Aisha recently updated her article on Black maternal mortality, a fear she wrestled with during a scary birth experience with her son, Chase.
In this article, she uses Chase’s birth story to help Black women advocate for themselves within a healthcare system that has failed to protect Black mamas and babies. Realistically, her advice about advocating for yourself as a patient is appropriate for all pregnant women, but it’s especially necessary for black mothers who face inequities in medical care.
Black Maternal Mortality Statistics
According to Everymothercounts.org, “the United States is the ONLY industrialized nation with a consistently rising maternal mortality rate.”
And this rising maternal mortality rate disproportionately affects Black and brown mothers–so much so that the Center for Disease Control and Prevention (CDC) calls racial disparities in maternal mortality a “complex national problem.”
Black maternal mortality statistics are daunting, mystifying, and downright terrifying:
According to NPR, “Black mothers in the U.S. die at three to four times the rate of white mothers, one of the widest of all racial disparities in women’s health. Put another way, a black woman is 22 percent more likely to die from heart disease than a white woman, 71 percent more likely to perish from cervical cancer, but 243 percent more likely to die from pregnancy- or childbirth-related causes.”
Are you hearing this?
Due to higher risk of certain health conditions like hypertensive disorders and significantly less access to good prenatal care, black women are 243 times more likely to die a pregnancy related death than white women!
So while I was privileged to have good maternity care, you can see why, when I was pregnant with my third child, I was concerned about being a Black woman in the care of a high-risk pregnancy specialist.
Black maternal health disparities are real, and they’re terrifying.
Lack of Patient Empowerment and Pregnancy Complications
Getting pregnant with my third child, Chase, was like a dream.
I was 34, and I had just recovered from a minor surgery to remove my uterine fibroids. Thankfully, the surgery had gone seamlessly.
My risk of pregnancy complications was greater because of the fibroids, so removing them before pregnancy was necessary.
In fact, fibroids and preeclampsia are 3 times more likely to occur in black women than in white women, according to ProPublica. In fact, 80% of black women have fibroids, and no one knows why.
Despite recently having surgery and knowing that something wasn’t quite right with my health, I really wanted to have my third baby at the age of 35. But as the adage goes, be careful what you wish for.
Appearance vs. Reality
From what the doctor could see, I was “healthy.”
I was happily married. I had 2 amazing children and 2 prior easy pregnancies with “no prior complications.”
Seemingly a perfect time and place to have a baby, right?
What I knew about my body and my readiness to have another baby was different.
I Was Not an Empowered Patient
Despite really wanting another baby by the age of 35, and the fact that my doctor found no reason for me not to (with the exception of my fibroids, but the surgery had gone well), I knew something was off.
I knew that I was overweight, and that I had gained too much weight during previous pregnancies, despite actively trying not to.
I also knew I had not lost a significant amount of weight after my previous pregnancies, even though I had tried and tried.
During my previous pregnancies, I had remained active, sometimes going to the gym daily. I ate a sensible diet for a pregnant person, and I told myself, “After my third baby I will make sure the weight never comes back.”
But I just couldn’t figure out why I couldn’t lose the weight.
I sought medical help and spent thousands of dollars trying to solve this problem.
But I have felt over the years that medical professionals have not taken my health concerns seriously. I was clearly at high risk for preeclampsia, but no one mentioned this to me.
At the end of my third pregnancy, I developed preeclampsia and was put on bedrest. My son was born very early at just 30 weeks and 1 day.
While he is happy and healthy now, we could have all saved ourselves so much heartache had we known just what I was at risk for.
Advocating for Myself During Pregnancy: What I Wish I Had Known
I did not advocate for myself in the time leading up to my third pregnancy, and I desperately wish I had. I’m here to help you learn how.
I am knowledgeable, and, in many ways, privileged. Yet I kept getting the, “Just don’t eat rice and potatoes,” speech from my doctors in regards to my weight.
Needless to say, this was beyond annoying and completely unhelpful. Telling me simply to change my carbohydrate intake felt like my doctor was making assumptions about black women’s dietary habits instead of getting to the root of the problem.
In retrospect, do feel I should have advocated for my health before pregnancy. I should have asked questions, and my doctor should have told me what I was at risk for.
I recently read that Teddi Mellancamp, of “Real Housewives” and “Vanderpump Rules” fame, will celebrate her third pregnancy for the first time as a “fit and healthy” woman. I am so proud of her, and anyone who accomplishes this feat.
But even while I feel like I should have advocated more for my health and demanded that the questions I had regarding my inability to lose weight despite diet and exercise were answered, guess what?
My healthcare team should have also questioned this issue. It should not be my job to be my own advocate, but one of the benefits of patient empowerment is that you can if you need to.
What Is Patient Empowerment?
The World Health Organization defines patient empowerment as “a process in which patients understand their role, are given the knowledge and skills by their health-care provider to perform a task in an environment that recognizes community and cultural differences and encourages patient participation.”
There are four components that are fundamental to the process of patient empowerment:
- Understanding by the patient of his/her role;
- Acquisition by patients of sufficient knowledge to be able to engage with their healthcare provider;
- Patient skills; and
- The presence of a facilitating environment.
Clearly, I was not missing number two: “Sufficient knowledge to be able to engage with their healthcare provider.”
I knew how to engage with my healthcare provider. I am an educated woman.
But what I was missing–that this definition doesn’t acknowledge–is that while I was relaying many symptoms that can be precursors of serious pregnancy complications, my doctor did not take me or my concerns seriously.
While I communicated with my doctor effectively, I was not warned that what I was describing put me at greater risk for preeclampsia.
So to this definition of patient empowerment, I would like to add the following: patient empowerment also involves a certain amount of tenacity for mothers.
Unfortunately, our healthcare system is set up in a way that we have to fight to be heard and understood.
This especially applies to African American mothers who have a much higher maternal death rate.
Tips for Black Patient Empowerment
- Find a healthcare provider with whom you feel a partnership. One of the best ways you can advocate for yourself is to find a doctor who you feel truly listens to you and will partner with you in your birth experience. When you feel you can trust your doctor, you will be much more likely to ask questions and bring up concerns.
- Do your homework. Does something feel off about your pregnancy? Listen to your mama instincts! Googling everything and anything doesn’t always serve you (in fact, it can scare you), but doing your homework when something feels wrong is always a good idea. You can always have a support person do the internet search and tell you only what you need to know. Then, bring these concerns up to your healthcare team, and don’t back down until you have answers that you feel comfortable with.
- Know that you are the expert on your body. Does your doctor have a wall full of degrees from renowned universities? Probably. But does s/he have a degree in your body, specifically? NO! All bodies are unique, and it’s important for you to remember that you are the expert when it comes to your body and how you are feeling. Knowing and understanding this will help you voice your concerns.
- Have a support person who can speak up for you if necessary. My husband was a literal rockstar during Chase’s birth, and I can’t say enough about having someone in your corner who knows your health and your wishes when it comes to your birth. If you feel cornered or unable to speak up around your healthcare team, give your support person permission to speak up for you.
Why is Patient Empowerment Important?
Patient empowerment is important because it means that the patient recognizes her own role in pregnancy and childbirth.
Thankfully, we no longer live in an age where women are required to be passive during the experience of carrying and birthing children.
But we do live in a time where women still aren’t always heard regarding our own bodies, especially African American women.
Patient empowerment is important because it lets your doctor know that you refuse to have your concerns taken lightly.
As such, you should always tell your doctors when you know there’s a problem, or even when your medical team suspects one.
If they don’t take your concerns seriously, push for them to investigate further. If they refuse, find a care provider who will.
Patient empowerment is so important! What are some ways you have spoken up for yourself during your pregnancy or delivery?