Advocates Are Afraid to Do This – Until They Love to Do It

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Earlier this year we hosted one of our APHA Workshop weekends*, with about 30 individuals who are somewhere in the process of growing an advocacy practice.

The APHA Workshops were originally designed to support the BUSINESS of advocacy only. The idea was that most advocates have abundant skills and abilities to advocate – they’ve advocated for themselves and loved ones, and sometimes non-family patients for years. What they didn’t know was how to successfully start and run a sustainable business / practice to allow them to do their advocacy work.  For five years, we hosted those original workshops all over the country, and student-advocates provided feedback indicating they were worthwhile.

Until… about a year ago it became clear that there was one major piece in the teaching of the budding profession of advocacy that was missing, a piece that no one had really named yet. Those of us who are leaders in the profession could describe it, but we had trouble honing in on a concise description, or definition, or better yet, a single word that would allow us to communicate about it.

This became even clearer at this year’s first workshop, mentioned above, where we added a component to address that missing piece. Some attendees, those new to advocacy, struggled to solve the real life patient / caregiver problems we posed. Observing some of the struggle helped me figure it out….

So today I’m going to name it, describe it, and then ask YOU to provide examples.

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The Dirty Dozen Skills, Abilities, and Attributes of Successful Health and Patient Advocates and Care Managers – Part I

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That’s quite a title for a blog post, don’t you think? I’ve been working on this one for awhile, and it seems to have taken on a life of its own. In fact, it’s so long, I’ve now divided it into four parts.

Further, you’re about to learn is that I can’t count. I call it the “dirty dozen” because it’s a catchy title and it will compel you to link here to read the post (You’ll read more about this in Part III !). But it’s really a list of 16 (yes, 16!) skills, tasks, and attributes that the most successful advocates are, and employ.

Which of these describe you and your abilities?  Which of them don’t?  Where do you go from here? Do your own assessment! 

 

Part I:  Attributes of Success Health/Patient Advocates and Care Managers

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Shooting Your Advocacy Practice in the Foot

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Readers of this blog may remember that my husband and I have been in the process of moving – from Upstate NY (where they had 40 inches of snow last week!) to Central Florida. (No, no snow here so far 🙂 )

Moving is a bear – there are no two ways about that. Ours took place in two stages: first to a rental house, putting 75% of our household goods into storage. Then Stage Two, this past week, moving into our newly built home, bringing our goods out of storage. Now, of course, we’re trying to make our way through all those boxes, put everything away into its new place, learn to live in a new space, dig through the chaos that any move entails, all the while wailing “This is the last move! No more! Too much!” 

Many of you have been there, and done that.

As I did during the early part of the move last spring, I’m going to share with you a couple of lessons gleaned along the way of the move because they are about working with people – the bread and butter of any advocacy business. They are so important, they can make or break your business.

The moving business is a service business, just as advocacy is a service business. Moving is extremely stressful just as any healthcare challenge is stressful. That makes it incumbent upon any service provider who supports clients going through stressful events (from advocates and medical providers to movers) to make stress relief part of their jobs.

The basics of stress relief are communications and consistency. You have to do the work, and you have to do it well and correctly, of course. But if you can’t communicate effectively, manage expectations, or be consistent, well – you are shooting yourself in the foot. Lack of those basics will undermine your success.

I would never again hire The Mover who moved us from New York to Florida. The reasons provide some excellent lessons for today’s post.

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Revisiting the Question: Advocate and Proxy, Too? Making Decisions for Clients

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Two years ago we asked whether a health/patient advocate can also be a decision-maker for her client in the form of being a healthcare proxy (the patient-designated person who makes end-of-life decisions for the patient, based on wishes the patient has legally documented). Since the ethics and standards of the original advocate role very specifically state that an advocate WILL NOT and CAN NOT make decisions for a client, would the new role of proxy create a conflict-of-interest?

The scenario shared was that “Gwen” had been Mrs. Smith’s advocate for a long period of time and they had developed a close relationship. Mrs. Smith, at the age of 90, wanted Gwen to be her healthcare proxy to help determine (if necessary) when it was time to allow Mrs. Smith to die, instead of conceding to the healthcare system’s attempts to keep her alive at all costs.

Could those two roles be performed by the same person? We didn’t answer the question. Instead, we used the opportunity to develop a best practice by asking for input and opinions from those in practice at the time. The question:

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

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Last week I shared with you two stories of my physician heroes, why they are my heroes, their relationship to my work in patient empowerment and patient advocacy, and why you, too, should emulate their actions; their professionalism, their behavior, and the actions they each took to buck a dysfunctional system.

It’s all good, and true to karma, what went around came around – today good comes back to them. They both have stellar reputations within the community and among other physicians worldwide. Well-respected. Well-deserved reputations.

Which takes us to today, and the karma that has come around to one of the doctors who did not behave well.

I mentioned last week the very arrogant oncologist who led my misdiagnosis odyssey.  His arrogance was apparent in so many ways. When one of the lab reports referenced an additional missing lab report, not only had he not realized it wasn’t present, but then (after I figured out, and alerted him that it was missing), he told me he was sure it would make no difference anyway. (It did.) When I insisted on a second opinion before starting chemo, he yelled at me – I had no time to waste! I needed to start chemo immediately! (I didn’t.)  When I asked if there wasn’t some other form of treatment that might be effective, he admonished me for second-guessing him – how dare I! That I needed to stop looking on the internet for cures! (OK – he might have been right about that one, but I sure as heck didn’t believe that at the time, and it’s a d*mn good thing I kept looking!)

Once it was proven that he was wrong (as in – I didn’t die !), rather than simply own up to his mistakes or apologize, he instead wrote a three-page letter to me explaining how he had taken all the right steps in my case. Excuses and more excuses. Never mind that (had I not sought a second opinion) I would have gone through chemo for no reason. Never mind that, once I survived chemo, I would have suffered side effects for the rest of my life. And certainly never mind that on the other side of chemo, this very arrogant and condescending doctor would have been considered a hero for curing me of an incurable form of lymphoma. A paper would have been written about it, and future patients who really did have SPTCL would have received the chemo I received – and they would have died because it wasn’t really the right protocol.

(And – don’t forget – he would have made a LOT of money from treating me with chemo I didn’t need.)

Just a few years later, karma came back to bite him in the backside. Continue Reading →

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