Do You Protect Your Herd?

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(Warning! Today I’m sharing a personal opinion for which I don’t expect total agreement. But I’m steadfast in my belief. I have science behind me. I’m girded for argument… bring it on!)

When I began my patient empowerment work in 2005, I had little or no understanding of the benefits of getting a flu shot except that – maybe – it would protect me from getting the flu. But I didn’t feel like I was at risk; I lived alone, I worked from home, my kids were no longer in school (where flu runs rampant!), and I was still relatively young. I’ve always hated getting shots, so why should I bother?

It was my right to say NO flu shot for me! And I didn’t get one.

In 2007, I became the patient empowerment expert for About.com, writing hundreds of articles and blog posts each year to teach patients how to become smart patients. My work required a great deal of research into every topic imaginable as it regarded taking responsibility for our healthcare, and making wise choices for ourselves and our loved ones.

Then 2009 rolled around and we began hearing about swine flu… THAT was when I began to learn more about the real need for flu vaccines, their history, how they work, the myths generated by the fearful and conspiracy theorists each year, and – yes – the merits of flu shots.

Since 2009, I have gotten my flu shot every fall. I’ve decided I’m unwilling to take any chances.

Take chances?  For what? (you might ask) My circumstances haven’t changed much since 2009 in terms of possible exposure, so why would I be any more concerned today than I was before then?

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Merriam Webster, The Who, and Hacking Churnalism

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Today we’re channeling The Who, Merriam Webster and one of my longtime favorite fellow patient empowerment buddies, Gary Schwitzer, who reminds me at least weekly why we just can’t trust the media without very careful review.

As follows:

I love a new word. When this one appeared in my inbox last week, I wanted to share it with you because it’s an important concept for advocates and patients alike.

Today’s new word is: Churnalism. (Take that Merriam Webster!) Churnalism is the product of lazy reporters and journalists who, without further investigation or review, simply reprint (or broadcast) a submitted press release or video roll from companies looking to profit, like pharmaceutical companies or medical device makers, or others looking for donations or grants (called “soft money”) like university or non-profit research centers, or anyone else who might make money by getting their information shared.

I encountered that new word churnalism in this headline, found in Gary’s Health News Review (HNR) newsletter:

Chicago Tribune repost of news release sets new low for churnalism

Here’s the problem Gary and his team at Health News Review address:  “News” is published and broadcast every day that makes its readers and listeners sit up and take notice – and is usually at least partially wrong or incomplete, and therefore misleading.

Health News Review does just what its name suggests. They review that health news: published stories and articles (text and video) produced by mainstream media and those press release submitters, and they rate them according to a list of criteria which, when met, make a story solid, objective news — information that can be trusted. The best a story can be rated is 5 stars. The worst is zero.

Now, it strikes me that churnalism by itself is already the definition of LOW, so to say the repost by the Chicago Tribune was the lowest of low – well – I had to check it out. On the HNR scale – it hit that goose egg, that zero. Ouch.

We have all fallen victim to this deception. We read or hear things we want to believe! We read or hear things that strike fear! But so often we aren’t getting the real truth.

Here are some sample headlines with their ratings:

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Can an Advocate Do More Harm Than Good?

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Yes, sadly (although rarely) a patient advocate does more harm than good.

I was reminded of this recently when I heard from one of our Alliance members who was picking up the ball from another advocate (not an APHA member) who had totally messed up the work a client-patient needed to have done – an advocate who had actually made the client’s situation worse.

The problem-creating advocate had been working with her client through a hospitalization. As far as we know, that work went well. Her core business is medical-navigational advocates. However, later, when the client’s hospital bill arrived, the client asked the advocate to help him appeal several items the insurer had denied, then to attempt to reduce the hospital bill.

I don’t know all the details. What I do know is that the advocate in question had never filed an insurance appeal before, and had never negotiated a hospital bill before, but she attempted to do both for this client, and she failed at both.

The client, frustrated and upset, reached out to the APHA member-advocate to ask for help. What the member told me was that it was too late. Only one appeal was allowed, and the hospital billing department had dug in its heals because the first advocate had become verbally abusive.

Yikes.

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A Second Opinion Isn’t Good Enough

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I’ve stewed over this for years, since 2013 when he was first arrested. But ever since Farid Fata was sentenced to 45 years in prison (ONLY 45!) for fraud, I’m like a dog with a bone. I just can’t let go.

dogbone

Last week I took at look at the Farid Fata case. He is the (former) oncologist who sentenced 553 people to their death or a lifetime of illness or financial bust by lying to them – telling them they had cancer they did not have, then treating them with chemo they didn’t need and ruining their lives. The 45 years he’ll spend in prison were not for the heinous crimes of destroying their health, instilling fear, breaking their hearts and stealing their hard-earned money. Rather he was penalized for defrauding Medicare and insurance.

Beyond the obvious disturbing and distressful aspects of this case, beyond my personal bias about misdiagnosis, and certainly beyond my real sympathy for the victims, is a big concern I have for advocates. Misdiagnosis, whether intentional or not, is happening with more frequency as doctors are spending less time with their patients. It is no stretch to see the responsibility for determination of a correct diagnosis as falling more squarely on the shoulders of advocates.

Despite the fact that we are not doctors or diagnosticians, our role in making sure clients get the right answers will become even more prominent as time goes on. For many reasons we can NOT afford to get it wrong!

Last week’s post was about the steps private advocates would have taken that would have prevented their clients from falling for these intentionally imposed misdiagnoses. Four steps. Four services advocates know to perform. Each by itself could have stopped a client-patient from being misdiagnosed.

But the bone I can’t let go of actually stems from a comment made by one of the post’s readers, Cindi, in reaction to one step – seeking a second opinion.

“Fata was many patients’ second opinion. He offered a better solution…. To assume none of his patients sought a second opinion is insulting…”

For one thing, it never occurred to me that Fata would have been the second opinion oncologist, and would have ended up treating people who had already received an opinion. It should have, but it had not.

But secondly, the more I think about it, that very fact proves that 

…a second opinion is no longer good enough.

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Do Advocates Have a Duty to Report Dangerous Patients?

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Warning! This will be one of those posts you think back to from time to time, because the answers aren’t clear or easy, and the stakes are so high.

danger

A few weeks ago we all watched the news about 150 people who lost their lives as their plane crashed into the French Alps; a tragic loss of life which we learned later was caused by the co-pilot, who had intentionally crashed the plane – suicide by one – mass murder of 149 others.  Horrible, tragic, and just so very, very sad.

It’s easy, of course, to dismiss the young pilot as crazy – depressed, suicidal, truly an example of mental health gone awry.  But if you’re like me, the next thought that pops into your head is a question, “Could it have been prevented?”

Once I learned of the pilot’s mental health issues, and the fact that his doctor had written a note to keep him from working, I wondered how exactly that had taken place. Writing a note isn’t the same as actively reporting to the authorities (whoever those authorities might be) unless a copy of the note was delivered to those authorities… (And as an aside, I wonder if the doctor stopped at handing the patient-pilot a note telling him not to fly, and didn’t report it to the right authorities, and if so, how does he sleep at night?)

But even more importantly, what are the rules or laws in the US? Is there any responsibility to report a patient who is dangerous to himself, or certainly others? Could a provider be held legally responsible if he did – or didn’t – report?  How does HIPAA affect the assignment of responsibility? If there is a duty to report such a patient, where is the line drawn? How does that reporting take place?  And how does one decide whether a patient is truly dangerous to someone else, or just him/herself – or even truly dangerous at all?

…..(sidebar)

I’ve been there. I’ve reported.

When I was a first grade teacher, many (many!) moons ago, teachers were mandated to report suspicion of child abuse among our students. One of my students, David, repeatedly came to school with black and blue marks, or a sore arm…. I would ask him how he got hurt and he had a new story every time — including the day he came to school with a black eye. When I asked him how he had gotten a black eye, he responded, “My mother said I fell down the stairs.”

And then I knew I had no choice but to report David’s situation. I was so upset to be put in that position! I was in my mid-20s at the time; still wet behind the ears. My hesitancy was a fear that when I reported it, David’s life would become even more difficult for him. Would he be taken away from his mother, perhaps thrown into foster care? If so, would that be a good thing in the long run? Or?

But none of those questions were mine to ask or answer. The law was the law. And I reported David’s injuries to state authorities.*

…..(end of sidebar)

Healthcare Professionals and the Duty to Report

So out of curiosity, I went looking for answers to my questions about providers and dangerous patients, and I learned something I had never known before, even after ten years of helping patients become smarter about navigating their care.

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