An Anniversary, Meltdowns, Blessings, and Fuel for Advocates

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Please indulge me today. I’m going to share a very personal experience I rarely think about anymore, in hopes it will propel some good advocacy.

Sometimes months go by when I barely give it any thought. Other times, like lately, it seems like everywhere I turn, I just can’t escape it. So here you go:

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Sleep Deprivation Spells Opportunity – and Responsibility

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Saturday night (well, OK, in the wee hours of Sunday morning) across most of the US and Canada, we “sprung forward” our clocks, resulting in lost sleep, and at least a day of being totally thrown off because the day seemed… well…. just weird. Since most of us don’t work on a Sunday, the day of adjustment helped us acclimate, and then – life goes on with a longer day of sunshine through next Fall.

But what if you had to lose that sleep every few days, then re-acclimate every few days?  What if you spent your life in a constant battle with the time of day, and the loss of sleep? What if you had to put in 28 hour days of work and then, somehow, try to catch up on your sleep, returning just 8 hours later to do it all again?

And then what if your job was brand new and involved saving lives, because you were a first-year resident doctor (no, they don’t call them interns anymore)… and your patients, who were hospitalized so YOU could take care of THEM, were constantly at the mercy of your lack of sleep?

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What the Presidential Election Results Mean for Patient Advocates

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When President Barack Obama ran for office in 2008, healthcare reform was already an enormous and contentious topic.

In those days, I was invited to speak to dozens of groups of patients and caregivers to help audiences sort out the issues that comprised healthcare reform so they could, on their own, decide which aspects (if any) were important to them. From the concept of “universal” healthcare through a public option, to coverage for pre-existing conditions, to portability, tort reform, free vaccinations to develop “herd immunity,” and many more, we looked at the whole of the topic as objectively as possible.

Before I started each talk, I would challenge audiences to figure out which side I was on by the time we were finished – reform? or no reform? It gave me great satisfaction that a show of hands at the end usually resulted in about a 50-50 split, demonstrating as much neutrality as I had been able to muster. It was somewhat surprising, because I was very much in favor of reform and truly not objective about the subject at all.

What I never mentioned to any of my audiences was this: that the bottom line for patient advocates was that healthcare reform was, simply, job security.

The reason: no matter what became of healthcare reform (and, of course, history tells us it became Obamacare, AKA the Patient Protection and Affordable Care Act or the ACA) – no matter what decisions became the law of the land, Americans were going to be confused by it all. They would be confused about costs, access, costs, access, access, and of course, costs, all of which could have huge detrimental effects on their health and care.

The more confused they became, the more they would need a health or patient advocate to help out.

Thus, job security.

That brings us to the 2016 presidential race, and victory for the candidate who said he will work to repeal the ACA.

No matter what your feelings about the outcome of last week’s presidential election, there are a few things advocates can take to the bank:

  • The healthcare system will go into further upheaval as the ACA is dismantled.
  • Patients and caregivers will find themselves more confused and frustrated than they have ever been.
  • The moneymakers in the system will seek new ways to maintain and grow their own profits, shifting and being shifty, making it even more difficult for patients to get the care they need at a cost they can afford.
  • The demand for private, independent advocates will grow – even more – and there won’t be enough advocates to help the patients and caregivers who need them.
  • Yes – all this adds up to even more job security.

We can’t anticipate exactly what changes will be made, but that doesn’t really matter. People are scared and confused now – today – because they just don’t know what to expect. They didn’t know before the election and they feel even less in control now. Even through the ACA, pricing has gone up in most states, and people feel like they are getting less and less for their money. Their confusion and frustration (and anger) is going from bad to worse.

They need help. They want help.

If you are absolutely serious about growing a successful advocacy practice, then NOW is the time to prepare. There will be no better time in history to establish your practice (if you haven’t already) and to expand it (if you’re already in business.)

Here’s how.

If you are just getting started:

If you’ve been in business for awhile:

For all professional advocates:

riper

What are you waiting for?

LEARN ABOUT APHA MEMBERSHIP | FIND MORE REASONS PATIENTS NEED ADVOCATES

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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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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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