The Most Expensive Business to Start

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It’s entirely possible to start a new business on a shoestring. We know this, because every publication worth the paper or website it’s published on tells us so:  Forbes, USA Today, Entrepreneur, all of them.

It requires time, grit, determination, attention to detail, great word-of-mouth – oh – and money! More about this in a minute.

The truth is – the concept of starting a business on a shoestring depends on the size of your shoes and therefore, the length and strength of their laces. It certainly doesn’t hurt if they are made of solid-gold, and you can sell them for your seed money.

If you hear a sarcastic edge in this post, it’s for good reason. It’s born of frustration, the feeling that I’m shouting into an empty cave.  I’ve just heard from one more person who has closed up her advocacy practice because she can’t afford it anymore; this on the heels of a conversation last week with one of our APHA Mentors who asked me, “Why do people think they can start an advocacy practice with no investment? Why do they think they can do it for free?”

Good questions. GREAT questions. And sadly, representative of too much reality and too much failure. And, for today, it means I’m going to try to provide this reality check one more time.

Let’s look at that shoestring for a minute. 

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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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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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Mixed Messages Are Just a Lawsuit Waiting to Happen

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A few weeks ago, I wrote Fool Me Once, Shame on You, But Fool Me Twice about the problems that can hurt patient-clients which also hurt our profession because they violate our ethical principles and best practices.  Those problems range from advocates working beyond their own abilities to help clients because they may not have the experience or education to do so, to selling medical products on their websites, and others.

Today we’re looking at the promised Example #2 of this problem in hopes of a hard stop. That problem: the danger of mixed messages.

As stated in the Fool Me Once post,

I fully expect that some of you will be appalled, possibly upset with me, because you’ve not thought of these as violations or misrepresentations. Some of you innocently don’t realize these transgressions; but now, as of reading this post, you are on notice…. please look at this not as judgment, but as a time for correction.

Mixed Messages

Sometimes our words and behavior – vs – what we as private patient advocates can do ethically, even legally, are in conflict. Sometimes subtle, sometimes more blatant, it’s those mixed messages that will cause an advocate to be sued one day and, frankly, it will be his or her own fault because it is easily preventable. Further, when that advocate is sued, his or her liability insurance, which is purchased specifically to pay for legal assistance, will look at these mixed messages and refuse to provide that cost support for legal needs.

What’s that lawsuit-provoking mixed message? 

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Fool Me Once, Shame on You, But Fool Me Twice….

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From bold-faced lies to misrepresentation – facts that aren’t facts, withholding information, skirting the code of ethics, and shades of truth – honesty and the advocacy business have been on my mind. I’m eager to hear your opinion on the subject, too.

My thought process was actually triggered by something that has nothing to do with advocacy at all, something that seems relatively innocuous, but then, maybe not-so-innocuous at all: the purchase of a 5-lb bag of sugar to bake holiday cookies last December.  Now a 5-lb bag of sugar has always been a 5-lb bag of sugar and has yielded a certain number of batches of cookies. I’ve been buying 5-lb bags of sugar all my baking life, so I grabbed the bag off the shelf at the store as I do every December, knowing that cookie baking was in my near future.

Except that this time, that 5-lb bag of sugar was (you guessed it) only 4 lbs!  It didn’t cost any less, but it had 20% less sugar in the bag. Yes, it was labeled correctly, and no, I had not read it carefully enough. But that is SO FAR beside the point. Old habits die hard.

So now?  I will never trust that store again when it comes to purchasing sugar – or anything else that I have trusted to be of a certain size. Sugar isn’t the only problem. Many other kinds of foods, including cereal, frozen vegetables, orange juice, pre-packaged produce and meats. A pound is still a pound, but a package that has always been a certain size is rarely that size anymore. Fool us all! That cummupence got me to thinking about other places in life where things are not what they seem to be. For example – the healthcare system. For people of a certain age or older, the healthcare system was always accessible and available, provided what we needed when we needed it, through kindly and knowledgeable providers, and at an affordable price (or no cost at all.)

But now, in 2016, that healthcare system no longer exists – not in the US anyway. Period. No patient accessing the American healthcare system can trust any portion of it anymore. We expect 5 lbs of sweet care, and we’re not getting it…

We’ve been fooled once, twice – and now it seems – will continue to be fooled forever…

… which is why people need patient advocates. So, in a way, that “Fool Me Once” led to a new profession in which we are all keenly interested. While we love the work we do, it is sad, in a way, to think about why we are called upon to do it.  People can’t trust the system, so they hire us to reclaim the honesty.

My thought process then turned to patient advocates ourselves, and the foundation upon which we are building our profession. Recently I have had conversations with advocates that suggest to me that our foundation is being chipped away at by some practicing advocates. Among us are people who are, sometimes innocently (sometimes not-so-innocently) violating the honesty, ethical standards, and expectations our profession demands, even if we have no formal way to demand them yet.

And that’s a problem. We’re very new, and we have only one chance to make that positive, ethical, above-reproach first impression. When some advocates aren’t on board with that approach, it becomes a problem for the entire group of us – those of us who are trying to right the healthcare system wrongs described above.

I’m going to provide two examples – one this week, and one soon – and some of you will see yourselves. I fully expect that some of you will be appalled, possibly upset with me, because you’ve not thought of these as violations or misrepresentations. Some of you innocently don’t realize these transgressions; but now, as of reading this post, you are on notice – now you will. 

Whether or not you’ve violated your ethics intentionally or innocently, please look at this not as judgment, but as a time for correction. Continue Reading →

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