Breaking the Rules

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If you think about it for a minute, rule-breaking plays an enormous role in the life of a patient advocate.

Rule breaking – is one reason (even if it’s not the only reasons) we exist – a problem we fight. One reason we are hired.

Rule breaking – can be a success tactic – one way to win the fight.

Rule breaking – is one of the major factors that separates private, individual professional advocates from our hospital and insurance counterparts – the distinction that often makes the difference to patient-clients’ outcomes.

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Twisted Words Put Me Off

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Within the past few weeks, I have had one phone conversation, and have exchanged an email, with two different people who are hoping to and working to become advocates, both exchanges which resulted in very negative takeaways on my part.

And then I wondered – how many of the rest of us do this same thing, even if we never intend to come across the way we do? And if we do it, no matter how unintentionally, does it give patient advocacy a bad name, or a black eye?

Those twisted words are actually a response, or the intent of a response most of us run into every day. All that is required to fix it is a slight difference in response which results in a huge difference in the impression it makes.

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Enemies? No, But With an Important Distinction

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fistpumpA recent email exchange with an APHA member highlighted a point we don’t make often enough, and one you need to embrace so you can discuss it with potential clients. The problem is – she used it to leap to an errant conclusion, one that demands clarity.

In her email, she mentioned that she was considering joining a different professional organization, one that focuses on hospital advocacy, teaching hospital advocates how to do their jobs.  She stated that the other organization

“has multiple affiliations with those purported enemies of true patient advocacy, patient relations departments.”

What? I was so taken aback! Enemies? How on earth would anyone construe that hospital patient relations personnel are enemies of private patient advocates?

Let me be clear.  THEY ARE NOT.  Not even close. Those words should never be in the same sentence.

But somehow she had drawn that conclusion, causing me to examine why she had done so.  And while I can’t explain the leap she took, I did identify the genesis of her idea, confirmed by subsequent email exchanges, as follows:

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Health Advocacy Ethics – Conflict of Interest? Or Important Service?

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elderlywomanA recent conversation with a handful of knowledgeable people, people I respect a great deal, yielded two different outcomes – either a loud “yes, of course!!” or a loud “no, no way!” So I want to know what YOU think. As a prelude to the story – the question I will ask you at the end is:

Should Gwen become Mrs. Smith’s healthcare proxy? Can she ETHICALLY make that shift? (We are not asking a legal question here – only a question of ethics.)

Mrs. Smith is 90 years old and until recently was quite healthy.  She is alone; her husband died many years ago, and they never had any children. She has a few nieces and nephews, but hasn’t seen or heard from any of them in years.  She lives in the country and has no neighbors nearby.  Even her close friends from church have all passed away. Gwen has been Mrs. Smith’s health advocate for several years now, accompanying Mrs. Smith to doctor’s appointments, lab tests, and whatever was needed for her care. About three years ago, Mrs. Smith was hospitalized for a brief time;  Gwen sat by her bedside and was a liaison between the hospital staff and Gwen for the duration. Over these years they have become very close. Mrs. Smith trusts and values Gwen’s opinions more than anyone else on earth and thinks of her almost as the daughter she never had. Now Mrs. Smith has asked Gwen to help her make the healthcare decisions that she will designate in her advance directives.  Included is a request to Gwen to become her proxy – that is, the person who will, if Mrs. Smith becomes incapacitated, make any decisions that regard end-of-life care on Mrs. Smith’s behalf. (“Proxy” is one term used – others could be agent, representative or power of attorney.) Continue Reading →

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The Real Cost of Selling One’s Soul

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I heard from a friend that he recently sold his start-up business after years of building it to do just that.

Wow!  I was so impressed!  “Take a break!” I replied. “I can only imagine how much work that was and how much money you must have made!”

Yes, he told me. It was a LOT of work and he is exhausted. But, he confided, he really didn’t make much money in the sale.

What?? I was flabbergasted… Then I learned why. It seems that he and his partners, in order to raise the money they needed to make their business so enticing and salable, had given away most of the company to investors – first angels, then later venture capitalists – so that by the time they sold it and all those investors took their chunks of the profit, there was little left for the original idea guys who had started the venture. (ouch!)

It got me to thinking.

Over the years, I have been approached by businesses that want to “support” my work. The first time it was a pharmaceutical company that wanted to pay me to speak to patients diagnosed with the diseases their drugs treated, teaching those patients about empowerment principles, and (oh, by the way) about the great work their company was doing. The offer came very early in my patient empowerment career and I was really hurting for income. I was so hurting that I didn’t know if I could keep doing the work I wanted so badly to do! Their offer was extremely tempting. I gave it some serious thought…

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