Patient Self-Advocacy

When we think of women to thank for being themselves, we don’t have to look much further than

When we think of women to thank for being themselves, we don’t have to look much further than Serena Williams.

Her example is outstanding.  She checks all the boss boxes.  Work ethic?  Check.  Commitment to excellence on and off the court?  Check.  Honest with fans and the public?  Check.  

Now we can add patient safety advocacy to the list.  In advocating for herself last September when she had complications from a blood clot after the delivery of her daughter, her actions laid out a life saving plan for self-advocacy.  

We can learn a lot from Serena’s situation.

This is what she did and what you can do also.  

  1. She went into the hospital knowing her medical history and medication history.
  2. She recognized the warning signs of her health conditions.
  3. She knew she needed additional care and she spoke up and up and up and up until she got it.  

She was not deterred.  She advocated for herself and she got the care she needed.  

The idea of self-advocacy for your health is not something to breeze through on your way to doing something else.  It is important to sit with this idea and figure out how you can be your own best advocate.  This is not a pregnancy or labor and delivery issue alone.  This is a medical care issue for everyone.   

As more reports like Lost Mothers are published we begin to see the factors that account for the disparity in medical care are larger than poverty and education.  It raises questions like how much do these factors affect health care in general?  What can I do to advocate for myself or my family when medical care is needed?

Language that encourages mutual understanding and conversation is primary to successful patient advocacy.  This is true for both patients and caregivers.  

These are three ways to use language to help with self-advocacy.

  • Learn the common medical language for your condition.  You don’t have to become a doctor or nurse or memorize a medical dictionary.  During pregnancy and before labor and delivery, learn the language associated with your medical care.  This applies especially if you have a chronic condition like diabetes, lupus, or high blood pressure.  Find out how those conditions can affect your care.  The better you understand, the better you can communicate.

Try this for example:  “I have high blood pressure.  I have been reading about high blood pressure problems associated pregnancy.  Can you explain preeclampsia and what it could mean for me?”

Are you suddenly a scholar on preeclampsia?  No, but you have the basis for a conversation.  You have created the opportunity to learn more about a serious complication of pregnancy that you might not have discussed otherwise.

  • Learn the language of pain.  There is a generally accepted way that healthcare professionals talk to each other and you about pain.  If you already know the language, you can communicate how you feel easily and accurately.  

Pain communication has four parts and can be remembered by thinking of the acronym LITT.  LITT stands for Location, Intensity, Type and Time.  Try LITT the next time you are discussing pain.

Pain Dos and Don’ts

Don’t:  “My side hurts really badly.”

Do: “Since lunchtime yesterday, my lower left side above my waist has had a sharp stabbing pain that does not go away.  On the 0-10 scale, the pain has been about a 5 since then.”

Okay, now you’re talking.  With this level of detail you can be sure your condition is understood by both you and your care provider.

  • Learn how to use assertive language.  Assertive language blends explanations or requests with the opportunity to get input from others.  It is not blind agreement nor is it forceful intimidation.  The focus is on dialogue so the best solution can be reached.

Try this: “I have been having shortness of breath for the last 10 minutes.  With my history of  blood clots in my lungs I don’t want to take any chances.  I know a ct scan of my lungs to check is important along with my medicine for blood clots.  Can you call my doctor right away before this gets worse?”

These four short sentences explain the problem, the history, a course of action and a request without being emotional, judgmental or intimidating.  They also convey a sense of urgency.

Self-advocacy is not an easy thing to do ever.  It is especially hard when you feel vulnerable physically and emotionally.  It is in these moments when all those positive posts you read all the time give you the boost you need to speak in your own best interest.  Remember, courage is not the absence of fear, it is speaking in the face of fear.  In this case, fear for your health, your very life, should be all the inspiration you need to advocate for yourself.  If you need a bigger boost, think about Serena setting the example and speaking up and up and up until she got the care she needed.

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