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, Glenn’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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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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These 8 Yard Sale Lessons May Improve Your Advocacy Practice

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We’ve made the decision. My husband and I have decided to leave cold Northeastern winters behind, and in just a few weeks we’ll be moving south.  We’ve sold our home in Upstate NY. We’ve purchased a home in Florida. We’ve put together the details for the actual move itself…

The only continuing challenge is one that will sound familiar to many of you. We have too much stuff.

When we moved into our current home in 2007, we were newly married. We jammed two entire households worth of stuff into this home – most of it simply moved to the basement. Then parents passed away and we collected even more stuff. Over the years our kids have removed their stuff, we’ve sold a few things, we’ve given a lot away… From holiday decorations, tools, and hobby supplies to old tax records, books, grandkids’ toys, games, and luggage. Family, sentimental, nostalgic, even historical. It’s the stuff accumulated throughout two lifetimes and those of our loved ones and… well, overwhelming, really.

But in Florida there are no basements!  Therein lies our problem….

The solution?  A yard sale, of course. So Saturday’s sale was round one.

Throughout the day I haggled, chatted, rearranged and sold stuff. But I also spent time just observing shoppers, and by the end of the day, I had put together a list of relevant customer service lessons for private, professional patient advocates.

Granted, there are some major differences between yard sale shoppers and patients who need advocates. But I hope you’ll be able to use this list to improve how you conduct business with the general public – most of whom will need to hire a private advocate sometime in the future.

Here are the customer service lessons that may be helpful to you:

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Physicians Buying In – Bring on the Patient Advocates!

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Posted in the APHA Discussion Forum by one of our member advocates,

In the last week I have received calls from 2 potential clients whose physicians actually advised them to get a Patient Advocate! One was for medical insurance denials and the other was for patient navigation. It makes me really happy that physicians in my area are recognizing that we exist and can help their patients.

Followed shortly thereafter by another advocate who observed,

I know the clinicians I encounter learn to deeply appreciate my role-and, except for those who are dismissed, become more deeply engaged with my clients, who are their patients. MDs seem to be relieved with the presence of another pair of eyes scrutinizing the medical history, reviewing the pharmaceuticals (and my invariable submission of corrections to the medication record residing within the EHR), researching clinical guidelines, finding ways to better coordinate care, and averting potential catastrophes.

And still another who added,

We get lots of referrals from physicians. We just did a webinar for a group of physicians in our area. It’s a great way to get the word out. Glad to hear others are experiencing the same!

So why is all this news, and why does it belong in this blog?

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