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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Repeal of the ACA… So Now What Should We Do?

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Last week marked the inauguration of the 45th president of the United States. No matter your feelings about him or his politics, he’s here to stay, presumably for the next four years, alongside a Republican majority in Congress.

The first order of business?  Repealing the Affordable Care Act (ObamaCare), the legislation under which many of us are able to get, and afford, healthcare insurance, and access to the care we need. With the stroke of a pen, the icing on the repeal cake was completed within the first few hours of the new president taking office. Congress had already baked the cake’s layers just a few days before.

The predictions about the effect of this rollback are dire not just for those who depend on ACA insurance, but for all Americans. The non-political Congressional Budget Office estimates 18 million people may lose not just their health insurance, but their ability to get health insurance, too, amid new discussions about pre-existing conditions and high-risk pools.

We hear those politicians say they plan to improve the situation, that insurance will become more affordable, that they won’t take away the ability of Americans to access care. Lots of talk, but so far nothing that looks like a real, implementable plan. Just lots of speculation.

So what are we left with?

The status of healthcare delivery in America has never been in such a state of flux as it is today.

Whether or not you are insured through the ACA yourself, whether or not you have clients who are insured through the ACA, as health and patient advocates we have to ask ourselves, “So what should we do now? How do we help our clients? How does this change our services?”

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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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Of Heroes, Trust, Discord, Arrogance, and Karma – Part I

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This year I can tell I’m finally getting beyond the trauma. It’s a feeling of freedom to some extent, but sort of a shame to another. And you know me – I always end up analyzing these things (or, perhaps over-analyzing them) – enough so that I’m going to share some of that analysis with you.

The trauma I refer to was the cancer (lymphoma) misdiagnosis in 2004 that propelled me to change careers to patient empowerment, and eventually advocacy. By trauma, I mean that I was told I that in a few short months I would be dead, and that I butted heads with the very doctors who were supposed to help me manage my diagnosis, one a most-arrogant oncologist who, in God-like fashion, told me I was foolish to waste time getting a second opinion because “no one will know any more about your cancer than I do.”

Right.

On September 20, 2004 – 12 years ago last week – after three months of doing battle with the healthcare system, I learned from a hematopathologist at the NIH that I did not have lymphoma after all. There was no evidence of any cancer in my body. None. Zip. All these years later I have never had any treatment.

Clearly, no, I wasn’t dead in a few months. They were wrong.

Further, it cost me every penny of my savings to prove I did not have cancer, despite the fact that I had health insurance. (It was crappy, high-deductible health insurance, but I was single and self-employed, and it was all I could afford.)

Since then, every year on September 20th I have mentally celebrated what has become a rebirth of sorts. I have simply taken stock of all the positive life changes that resulted. I’ve tried to use that impetus to drive me past the PTSD that remained for so many years. It seems to work; I haven’t had a meltdown in more than two years, and life just keeps getting better and better.

I know I’m getting beyond the trauma because when Tuesday, the 20th rolled around this year, it was late afternoon before I even realized what day it was. In the past, I’ve dwelled on it for days before, and sometimes after… but this year, 2016, I barely thought about it at all. Hooray!

Of course, life lessons can always be gleaned from such an experience. So today, based on my misdiagnosis odyssey, I want to focus on behavior in the face of discord, and how it can have an enormous effect on one’s reputation and success as an advocate, just like it did for those doctors involved in my misdiagnosis. Further, over time, it can have an immense ripple effect, both good and bad – the part I call karma.

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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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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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Revisiting the Case of Farid Fata – Why Patient Advocates Must Take Notice

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In July 2015, we took a look at the case of Farid Fata, the Michigan oncologist who is now in prison on fraud charges because he diagnosed and treated more than 500 people for cancer they didn’t have, many of whom died.

Yes – you read that right.  You read the part about treating more than 500 people for cancer they didn’t have.  And, I hope you caught the part that he is in prison on FRAUD charges – not murder, not manslaughter – nothing that recognizes the horrible physical condition he left those patients in after aggressive chemo and radiation. Whatever he could make money from, that’s what he did, and that’s why he is in prison.

See:  A Second Opinion Isn’t Good Enough

Shortly after publishing the post about second opinions, I wrote about how, if any of Fata’s patients had hired a patient advocate, they would not have become victims. There are tasks we do to help our clients that would have prevented harm once we were hired. 

See:  How Professional Patient Advocates Would Have Stopped Farid Fata

Then, last night, NBC’s Dateline took a more in-depth look at the case of Farid Fata, featuring interviews with a number of the patients he had treated, plus an interview with a nurse, Angela Swantek, who figured out what he was doing during a job interview three years before Farid was arrested. No, she didn’t take the job. Instead she blew him in – and the State of Michigan did nothing about it then. (I say KUDOs to her and a pox on the house of those people who decided not to investigate.)

What I learned during the Dateline interviews was that Continue Reading →

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