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The term “empowered patient” has become overused and often exhausting to embrace. If that sounds completely contrary to what we’ve been espousing at the Preeclampsia Foundation, it’s because over time and in an increasingly complex health care system,
for most of us, what is expected of us as “empowered patients” has become too big to manage. So try to keep it simple and doable.
5 Steps to Being “Empowered”
The cornerstones of being an empowered patient, particularly when faced with a complicated pregnancy, include:
1. Knowledge. Access to understandable and accurate health information is essential to empower a woman to participate in her care, and patient-centered organizations take responsibility for providing access to that information.
2. Participation. This means taking steps like getting your lab results, and engaging your provider in questions and answers.
3. Find another provider if #2 above isn’t working. We’d like to see all providers wearing stickers that say “I’m listening.” If yours isn’t, look elsewhere.
4. Listening to your body, and sharing that insight with a receptive provider. Patients are partners and have knowledge and expertise that is essential to their care.
5. Have your own advocate, especially when things really start to fall apart and you are not mentally or sometimes physically “present” and alert. This may be a husband, partner, mother, sister or best friend.
This month, we’re focusing on #4 which is also one of the hallmarks of patient-centered care.
There’s a reason we’ve stuck by one of our core messages – Know the Symptoms, Trust Yourself – for so long. While we are not so naïve as to think all preeclampsia tragedies will be staved off by getting an earlier diagnosis, we do know from story after story, that women often know that something is going wrong before her health care providers do. We sometimes joke about having a “sixth sense”, but “I just knew something was wrong” is a very common refrain, and it may not accompany the classic symptoms about which we provide patient education.
One of our members, Laura Daigle Muller, Anchorage, Alaska, saw her first pregnancy deteriorate over the course of a month. Her blood pressure began creeping up though was still within “normal” range, she had swelling, and a strong intuition that something was wrong. When she reported the symptoms to her midwife, she was brushed off, but Laura heeded that not-to-be-ignored inner voice and took herself to her hospital’s labor and delivery unit to be checked over. Turns out, she had severe preeclampsia, was immediately admitted and delivered shortly later. She credits her insistent intuition with saving her and her baby’s life.
“Mother intuition is a funny thing, but I'm glad God gave it to us,” writes “phoenix-mama” in our Community Forum. “Monday I started feeling off... and had this nagging intuition that wouldn't set still.” Even after calling her midwife and checking her blood pressure on a home machine, she “couldn't shake the niggling feeling I had, so I decided to go in.”
It turns out her proteinuria was in the severe preeclampsia range and she was immediately admitted to the hospital. Had she not heeded her intuition it would have been several weeks before she was scheduled to see her care provider and a lot could have gone wrong in that time.
"Mellybute", another Forum poster, described her “feeling” this way: “It's hard to pin point exactly when, but for sure in my second trimester I knew there was something going on with me. I did not know what [preeclampsia] was then or the signs and symptoms or I would have known exactly what was going on with me.”
Sometimes that inner voice may be a lifesaver. “Being in tune with my body (knowing I felt off) really saved my life. Honestly, I baffled the medical staff...the fact I felt it coming on before/while it really turned severe,” writes “kellikbock” on our Forum.
Unfortunately, we’ve become so “smart” about medicine and drilled on the value of evidence-based choices, that we’ve forgotten that we are very qualified experts on ourselves. The two halves must work together -- your care providers bringing well-grounded medical experience with and deep respect for preeclampsia; and you, the pregnant mother, bringing 20-30-40+ years of experience, deep respect, and understanding of your body.
We have intellectualized the intuition right out of ourselves. When that quiet voice deep inside says “something’s not right”, don’t ignore it. Please. Wear a sticker proudly that says “I Am an Expert About Me” and call liberally upon your tangible and visceral evidence to contribute the information your health care providers need to support your pregnancy.
Do you have a “sixth sense” story about your pregnancy? Please post it here or on our Facebook page.
California Maternal Quality Care Collaborative
Preeclampsia Toolkit Review and Patient Support
September 25, 2015
Dignity Health Summit, Las Vegas, NV
October 1-2, 2015
Grand Rounds - Tampa General Hospital, Tampa FL
October 28, 2015
March of Dimes Prematurity Prevention Conference
Crystal City, VA
November 17, 2015
11th Annual Texas Conference on Health Disparities
Ft. Worth, TX
June 9-10, 2016