What Health Advocates Can Learn from 9/11

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With the demise of Osama bin Laden, I’m reminded of experiences I can share with patient and health advocates and navigators that will help us do our jobs better.

Many readers of this blog know that the reason I do the work I do is because I was diagnosed with a rare, terminal lymphoma in 2004.  Being told I had a terminal disease was heart-stopping and terrifying. Even today there are certain triggers that drum up all that emotion. Post traumatic stress rears its ugly head….

Of course – I don’t wish that for anyone who ever reads this blog!  However…

I believe that to truly understand how horrifying such a diagnosis is, you have to live it.  But if you have never lived it, I can give you a metaphor. If you will give this some thought and embrace it, you will become a better advocate, because you will better understand how your client feels.

Close your eyes, and think back to 9/11 – and 9/12, 9/13, and those subsequent weeks and months….  Think back to the moment you watched those planes fly into the World Trade Center on TV, heard the news, saw the photos, spoke to a loved one, cried.  Embrace the fear you felt.  Remember that horrible feeling that we in America had lost our innocence, but even worse, any sense of security we had felt our entire lives to that point. We became afraid of doing ordinary things – being in crowds, flying in planes – our everyday lives were disrupted in ways we never could have imagined.  And – we knew we could never go back to the innocence of 9/10.  We had to learn to deal with it.

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Why Do You Choose to Be a Patient Advocate or Navigator?

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During the past few years of connecting with patient advocates and navigators, I’ve asked dozens (maybe hundreds) of people why they chose patient advocacy work.

Each person has one, individual, personal answer to that question, but there are an astounding number of similiaries.  Among them:

  • They believe they were cut out to help patients in need.
  • They have had some sort of experience that tells them that whatever they’ve been doing to that point is no longer enough.
  • Working with patients, helping them navigate and find improved outcomes from the healthcare system, feels like a higher calling.
  • They don’t like what they were doing before, whether that meant they worked in hospitals, as school teachers, librarians or for insurers or other payers who forced them to make choices they were not comfortable with.

Among those who have worked in healthcare previously, perhaps as nurses or physicians, perhaps as some other health-related job, they all give an additional reason.  This is the one almost-universal answer I’m given:

  • When they chose nursing (or whatever their previous healthcare job was), they learned to be an advocate for patients.  The evolution to the current healthcare system has taken away that opportunity. Therefore they hope that being an  advocate or navigator will allow them to refocus on what’s important to them – the missing advocacy piece.

Just as striking are the reasons for the shift to advocacy that are missing.  No one ever tells me:

  • They want to earn a lot of money.
  • They are choosing work that is safe and secure.
  • They want to be advocates because they want to take a lot of time off.

I find this so interesting.  I can’t think of any other career that gives people such satisfaction, while at the same time, offering so little perceived security (or time off!)

I say “perceived” – because when done right, owning a business can be very secure. If you have chosen to start a private patient advocacy business, once you can get the ball rolling, it can be very secure.  If you are the owner of the business, including a solo practitioner, no one else can fire you or lay you off!

No big points to today’s post – just a few observations …. and a question for you: Why did YOU choose to become  a patient or health advocate or navigator?  Do you concur with the reasons outline above?  Do you disagree?  I invite you to share your thoughts.

•  Learn more about what it takes to become a patient advocate.

•  Learn more about starting a patient advocacy business.

• • • • • • LEARN MORE • • • • • •
| FOR PATIENTS | FOR ADVOCATES |
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Standing Up for Our Patients – Those Aretha Franklin Moments

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This post asks the question:  At what points do we go to the wall for our patients?  And when we need to go there, what’s the best approach?

Scenario: You’ve accompanied your patient-client to a medical appointment and the receptionist is rude to your patient when you check in.  Do you say or do anything?  And if so – how?

Scenario:  As you sit by your patient’s hospital bedside, a nurse comes in to change a dressing already wearing gloves.  You ask her to wash her hands and put on new gloves and she cops an attitude.  Do you insist?  And if so, how?

Scenario:  Your client needs to make a very difficult medical decision and has asked for your help to weigh the pros and cons, and to uncover additional possibilities.  You’ve walked him through all the possibilities – including those the doctor provided, and others you learned about through some research you did on his behalf.  His choice is not the same as the doctor’s recommendation, but when he gets to the appointment with his doctor to share his decision, the doctor tells him he’s making the wrong decision. Clearly uncomfortable, your client begins to backpeddle, to default to what the doctor has recommended.  Do you speak up on your patient’s behalf?  And if so, where do you start?

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Health Advocacy and Healthcare Reform

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If you know and understand healthcare reform in the United States, please raise your hand and shout “I do!”

<<hmm… I hear crickets…>>

That’s right.  There is no one who understands it, including Kathleen Sebelius (Secretary of Health and Human Services), or Donald Berwick (nominated to lead CMS).  It’s too complex, too long and frankly – just plain daunting.

But we are healthcare professionals.  We make our livings understanding healthcare systems.  So if we are confused by the complexity of healthcare reform, just imagine how patients and caregivers feel!  Add to that all the changes going on at the state level regarding healthcare, including home care and nursing homes, and what do we have?

AN OPPORTUNITY!!

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Private Professional Patient Advocates Week

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Patient advocates and navigators are my heroes.

As such, I am thrilled to announce the first Private Professional Patient Advocates Week (planned to be an annual event) – a week of recognizing the talents and contributions of the several hundred private patient advocates across the US and Canada.

“Thrilled” may actually not be strong enough.

Over the past couple of years, I have had the privilege of meeting dozens of private advocates – people who are dedicating to smoothing the difficult path through the healthcare system.  They lead their charges to improved health, they protect them from medical errors and infections, they help their patients learn and understand more about their diagnoses and treatment options, they explain pros and cons to help patients make choices, they juggle appointments among providers and review medications to be sure conflicts aren’t creating problems when the intent was the opposite. Then they save them money or at least make sure it’s being spent wisely.

And that all happens before lunchtime.

It seems like a week isn’t enough time to provide due honor.  Patient advocates and navigators devote their lives to improving the lives of others.  There is no more noble calling.

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