Would You Draw a Line?

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Early in my patient empowerment work, I was invited to write a column for my local daily newspaper. Over the next six years, I wrote hundreds of columns on every empowerment topic imaginable from how to get copies of your own medical records, to how to research a drug your doctor prescribed for you, to the (what we called at the time) “healthcare reform”. My column ended in 2011, but much of that work still stands today, some as useful today as it was then.*

As a result of those columns, I became a resource person for many locals who were struggling with some part of their healthcare. Many were scared or angry with the parts of the system that didn’t work for them. Some were just desperate to find a solution for an incurable disease or life-altering damage from an accident.

One such gentleman was Glenn, a man who had developed a glioma, a tumor that had grown tentacles throughout his brain. He was a well-educated man, an architect by trade, and was frustrated by what he saw as the continual roadblocks to his care. The glioma was inoperable. He had sought second and third opinions. His neurologist wanted to treat him with chemo, but Glenn refused chemo because he felt as if exposure to toxic chemicals might have been the cause of the glioma to begin with.

He first contacted me in 2006, and we stayed in touch, discussing many aspects of his care, until he died in 2012. Throughout those years he approached me with questions, and together we sought ideas and solutions, many of which subsequently ended up in one of my books and several of my newspaper columns. From his surprise when I wrote in one column about changing doctors, to the story I’m about to tell you about seeking help from a bogus cancer treatment center, I got to know Glenn quite well. He became a friend, and I learned so much from our interaction. I was not acting as his advocate by the definition we use today for professional patient advocates. We simply bounced ideas off each other.

While I respected his intelligence and the career he had built, I also learned from Glenn what desperation does to a patient. Which leads me to the topic of today’s post.

About two years into our friendship, Glen’s glioma was growing, and he still refused chemo. He had left his job, and spent his days in search of something – anything – that would make the tumor disappear.

For example, he found a “doctor” online who promised him that if he bought her DVDs, and prayed many times a day, his tumors would dissipate. He spent hundreds of dollars on DVDs. He prayed and prayed. He was so convinced her approach would work, until, as you might guess, it didn’t.

He found several other possibilities of similar import over the next couple of years. He would ask my opinion, and was always disappointed when I didn’t react with his same enthusiasm. My assessment was usually based on cost – not just money, but the cost to his physical well-being and emotional investment, too.

Then one day he sent me a link to a clinic he had uncovered, convinced it offered him THE solution, because it offered him THE cure. Continue Reading →

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Balance in All Things – We Create a World of Good

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Since moving last month, I now live not far from Orlando. Unless you’ve been living under a rock, you know the tragic and horrible events that have surrounded this city during the past ten days. From the killing of a promising young singer, to the mass murder of 49 young people, to a toddler’s death by alligator. I didn’t directly know anyone involved, but I can certainly speak to the pall that has been cast. The horror, followed by the myriad resulting emotions – sadness, dread, apprehension, and certainly the anger…

Contrasted with those events, this week my inbox featured two testimonials for APHA members.

Now – keep in mind that I receive testimonials frequently. Not a week goes by that I don’t get a submission from a member’s client that speaks in very positive and often glowing terms about how that advocate helped the submitter. It’s one of my favorite parts of my work.

But this week, receiving those good words affected me very differently. It was like the heavens opened and the angels began to sing! Because this week, the very good and beautiful words written about those advocates who have changed lives in very positive ways was a counterbalance to the very bad and ugly.

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The YOMs Are Back! (And That’s Not a Good Thing)

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You may be aware that The Alliance of Professional Health Advocates maintains a list of mentors – people who have worked in private advocacy for long enough, and who have become successful enough, to be willing to, and able, to mentor advocate wannabes – those of you who want to become the best advocate you can be, but understand there are limitations to your knowledge that will get in the way of your success. Our listed mentors are professionals who are paid for their expertise, education, and advice by those who want to learn from them.

Hold that thought.

We all know there are people “out there” who think they are – or at least behave as if they are – entitled.  Entitled to anything at all – entitled to park in a handicap parking space (when they aren’t handicapped), entitled to move to the front of the line, entitled to help themselves to something they should be paying for, even, simply, entitled to interrupt or even bully others.

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Tough Questions, Informative Discussions, and Opportunities to Count Our Blessings

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From 2006 to 2010, I hosted a weekly radio show, sponsored by Upstate Medical University (Syracuse, NY). It gave me the opportunity to interview truly knowledgeable experts in every aspect of medicine and healthcare you can imagine.

It was an incredible learning experience. I would walk away from our recordings each week realizing that for every iota of information I knew or had just learned, there were millions of iotas I didn’t know, would never know, and might never even know to ask about. Gratifying, brain-stimulating, and sometimes overwhelming.

photo - dr eastwood

Dr. Gregory Eastwood

Included in the conversations was a monthly feature that focused on ethical questions in medicine and healthcare. I co-hosted the sessions with Dr. Gregory Eastwood, the president of the university, and a member of the Bioethics and Humanities Department. We made quite a team: the professional who, for decades, had dealt with these issues and the people who faced them, paired with me, the patient, who had never had to deal with most of them, but who tried to put herself in the shoes of those very frightened, overwhelmed and sometimes angry patients and family members who were forced to face difficult and often heart-wrenching decisions.

During those years we produced dozens of rich discussions, dealing with facts, reality, and perception, as affected by morality, religion / spirituality, culture, the law, and the human heart. I just loved those conversations – they made me think in directions my brain had never been forced to go before. (One of the results was the reminder to count my blessings. Few of us do that often enough.)

In 2010, I had to walk away from my hosting duties. My travel schedule had made it all but impossible to keep up the weekly recording schedule; totally unfair to the producers, and exhausting for me. I look back on the experience with gratitude for both the opportunity of meeting so many intelligent people with so much expertise, and the in-depth education I received on so many topics related to medicine, the healthcare system, and their impact on people.

Fast forward to today.

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Today I Expect They Will Begin to Fly. Will You?

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If you follow this blog, you know my husband and I have moved to Florida. It’s been a long two weeks, but we are now settled in our temporary housing, a nice home in the same community where we will be building a new home. (Yes, another move!) 

Here in my new space, my desk sets right next to a window, looking out over some garden palms. Pretty, and I thought maybe peaceful, too. I’d be able to get some work done – a quiet place to work on APHA business and book writing…

Until early last week Continue Reading →

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A Train of Thought to Put You on the Fast Track to Success

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Last week my husband and I made our move. After decades of living in Upstate NY, we moved to Florida (hey! It’s hot down here!) – and are now transitioning to new lives in a new place, with new friends, new challenges, new fun and more.

The 1200+ mile trip itself was made a little easier by taking the Amtrak Auto Train. If you aren’t familiar with the Auto Train, it’s a service that transports both you and your car, leaving from the Washington DC area and traveling non-stop to Sanford, Florida, just north of Orlando. Your car is loaded onto a special train car built for that purpose, while you ride in a nicely equipped passenger train car.

It’s a long trip – 800+ miles – and by train it is scheduled for 17 hours, leaving late in the afternoon and arriving early the next morning. Because the trip takes so long, they include additional services as part of the price including two meals (dinner, and breakfast the next morning), movies, a lounge car, internet access and other amenities to help you while-away those many hours. You even sleep right on the train, either in a sleeping car or right at your seat.

So why do I wax poetic about the Auto Train on a blog that is focused on private, independent patient advocates? 

Because, oddly enough, I think we private, independent advocates can take some lessons from the Auto Train service – both positives and negatives.

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When Clients Lie

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Years ago, I hosted a radio show where I had the opportunity to interview medical providers from many specialties about their work with patients. One of the recurring themes was that “Patients lie.”

Now – you might wonder why that would become a theme, but the answer is quite simple. It was important to discuss it during the show because smart patients need to know that their providers assume they are lying as a part of the diagnoses or treatment they provide.  (Good advice for smart advocates, too.)

Here are some examples:

  • An anesthesiologist told me that patients are always asked how much alcohol they drink. Whatever answer the patient gives, is then (at least) doubled when it comes time for the anesthesiologist to determine how much anesthesia to administer during surgery. (An honest patient may not receive enough anesthesia based on that “doubling.”)
  • Endocrinologists ask their diabetes patients whether they are watching their carb intake. The patient may say “yes,” but when the provider sees an A1C value that is too high, they just assume the patient has lied instead of seeking another cause for that too-high A1C. (That’s problematic if there truly is another cause.)
  • Many primary doctors and nurse practitioners told me that when they ask a patient if she smokes, and she says no, they may not believe her if she has a history of smoking. (An honest, smart patient needs to be aware that untrue judgment is being made.)

So what does all that have to do with patient advocates?

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The Binder, the Meltdown, and Some Advocacy Karma, Too

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I beg your indulgence today as I relate a personal story. I don’t usually do this – rarely do I share this much personal information! But I promise you, if you stick with it – it will make sense by the end.

As mentioned in last week’s post, my husband and I are getting ready to move. In less than three weeks, we’ll have begun settling in more than 1200 miles away.  Since we will have no basement (!) and since it’s just really about d*mn time (!) – we are cleaning out, purging really – getting rid of the excess stuff in our lives that we just don’t need or want to have to deal with (or don’t want our kids to have to deal with) in the future.

Yesterday was “clean out my office” day. It was a daunting task, a room chock full of everything from old computers to old paperwork, personal papers, workshop materials, plus books, books and more books, and more tchotchkes and little collectible things than you can imagine. Now about 2/3 of it is either set aside for yard-sale-round-2 – or is in the trash or recycling. Gone. Much of the rest is packed up and ready to move.

Today I’m actually feeling quite pious about the whole thing. I was organized, got started early, and played my favorite music – loudly –  all day. I made it as much fun as I could, considering the huge job that it was. By the time I was done, there was a certain “high” to having completed such a huge task.

Cleaning out was physically demanding. However, the real challenge was the emotional demand – something I had not anticipated. Cleaning out meant I dealt with memories all day long, some good, some not, and some alarming, as you’ll see in a moment.

I found my daughters’ birth certificates. I found the draft of my first book (one I never published). I found my divorce papers from 1988. I found all my newspaper column clippings – 6 years worth! I found my mother’s hole-in-one golf trophy from 1977. I found proposals I had written when I owned my marketing company, and thank you notes from past clients. I found the little give-aways from the radio show I hosted several years ago…. the list goes on and on.

Finding memorabilia means you revisit their history; it’s not like you can just sort those items them without processing them.

And thus – the melt-down.

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