Craving Inside Information – from the Outside

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I mentioned last week that a dear friend has been diagnosed with a terminal disease.  I’ve known this for several weeks now, yet it still catches in my throat many times a day.  My work in patient empowerment and advocacy provides chafing reminders way too often that my friend is sick and that there is nothing – not.a.thing – I can do to help him.

Exacerbating my heartbreak is the fact that I am hundreds of miles away from where he lives, and I am a friend that doesn’t know his family.  That means that getting information is very difficult to do.

He was hospitalized about 10 days ago.  I do know that his family has rallied around him and I have been able to keep up… which is why I’m sharing this information with you.

His sister and daughter have been marvelous about posting almost daily to CaringBridge – a website that allows patients, families and friends to keep up with each other.  I’m able to go there are read about his progress.  I can add comments or send him messages.  It’s an opportunity for an exchange of information that if it didn’t exist, would leave friends like me entirely in the dark.

Caring Bridge is just one website that makes it easy for this type of information exchange about and for patients.  Care Pages is another one.  I actually wrote some Do’s and Don’t’s for using patient websites about 1-1/2 years ago (everything from understanding that they aren’t HIPAA compliant to being sure to wash your hands afterward if you are the person posting about the patient from a public, hospital computer.)

But until this experience, I didn’t understand just how important this ability was. I now understand the frustration of being on the outside, craving inside information.  “Important” isn’t even a strong enough word.  Vital, maybe.

So why am I sharing all this with you?

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It’s the Universe Calling: Time for Plan B

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A few months ago, I was invited to speak in June during a one-day program for members of the Pennsylvania Bar Association on the topic of recovering from a catastrophe.  Attorneys who attend will learn about the things they need to do should something devastating happen in their lives (an accident, caregiving for a loved one, a fire, whatever….)

About ten days ago, I heard from a dear dear friend that he has been diagnosed with a terminal disease. Prognosis, just a few months. I am devastated – my heart just aches for him, his family, and yes, for myself, too.  And I wonder…. he is a small business owner…. what will become of his business and his clients?

Then this weekend, I was approached to review a new book, written by a doctor who, as a result of a devastating car accident in 2005, became a patient himself and dissected all that was wrong with his care.  Included in his story is the fact that he has given up his thriving practice of gastroenterology, a practice which had to take a back seat as he recovered from his injuries.

Which is when (yes, I’m slow….) I realized that the universe was telling me something.  Or at least posing this question:  As advocates, as people who others rely on, how prepared are WE for devastation in our lives and, importantly, how that will affect THEM?

How many of us have a Plan B?

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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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