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 →


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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Asking WTWTTCH Helps to Overcome the Paralysis of Analysis

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Geschockte Seniorin hält ihre Hände in ablehnender Haltung vor sichHaving just returned from the APHA Business and Marketing workshops in Tampa, and in reviewing my notes and questions from attendees, I’ve come to a new conclusion about why many people have so much trouble pulling the trigger to actually SAY they are in practice – the formal hanging of their shingle, as it were….

Regular readers know I call this the “paralysis of analysis” – that inability to take the last steps.  I’ve written about it here, and I’ve made recommendations here, and in both those cases, I’ve made a pretty thorough case for why advocates should not be so afraid to take those last steps.

My new thinking actually shifts the direction a bit…  whittles it down to a singular fear that I think represents the great majority of paralysis of analysis…. that is, that….

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Insurance Reimbursements for Patient Advocates?

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paperworkThis is one of those questions I’m asked frequently which recently popped up again: When will private patient advocates be reimbursed by insurance?

In fairness, the question is usually asked by either those who either aren’t advocates, or are in the very early stages of thinking about patient advocacy as a living. They haven’t been exposed to the issues involved on a regular basis, so the obvious answers aren’t so readily apparent.

But whether you’re a total newbie, or you’ve been dancing in advocacy circles for awhile, there are two answers, at least for now:

•  probably never

•  hopefully never

If those answers surprise you, then you don’t know enough about health insurance and/or you don’t understand one of the most important attributes of private, independent advocacy.

Health insurer reimbursement for private, independent advocates would not only create a conflict of interest, but would drive most advocates out of business. In any case, reimbursed advocates would no longer be private NOR independent.

Let’s break it down. Continue Reading →


The VITAL Piece of Information the Press – and Many Patients AND Advocates – Are Missing

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Soldiers march in formationIt happened one more time this week, frustrating me one more time this week, making me feel like a broken record again this week and then realizing…. hey!  Why not make this point louder and clearer enough so that YOU can all be a part of my “point well spoken” army!

What am I talking about?  The press – which has produced one more article this week about this “new career” of patient advocacy or navigation, making it sound like a grand dream come true for anyone who cares about helping patients.  None of these articles have been realistic about the realities of employment, or the lack of employment, and the conflicts of interest that arise through advocacy employment.

What happens next is the many dozens of email inquiries I begin to receive about GETTING A JOB as a patient advocate.

But I digress…

So before I begin – please understand that the point of this post is to enlist you in the army of advocates who are going to make this VERY IMPORTANT POINT (VIP!)   Please raise your right hand and swear that YOU will share this point with at least 10 other people this week …..

That is:

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