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 or guardian (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 or guardian 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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Our Clients Need This ONE Skill the Most

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Twenty years ago, prior to self-employment and work in patient empowerment and advocacy, I was the marketing director for my local community college.

In so many ways I loved that job. It was different every day and allowed me to meet and get to know people I never would have known in any other way. It required me to get out into the college community to meet faculty, other administrative departments, and students. It required me to have good relations with the press, and because it was during a recession, it required me to be creative and clever to bring in new students. Community colleges attracted so many non-traditional students — those who were older, or had been laid-off, or wanted to change careers; they had such interesting backgrounds and dreams. And the biggest challenge – the advent of using the internet for marketing. Can you imagine? Attracting students by using the cool new surfing tool – the World Wide Web!

As I said… I just loved that job.

But, unfortunately, yes, there was a downside, too.

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Would You Draw a Line?

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Early in my patient empowerment work, I was invited to write a column for my local daily newspaper. Over the next six years, I wrote hundreds of columns on every empowerment topic imaginable from how to get copies of your own medical records, to how to research a drug your doctor prescribed for you, to the (what we called at the time) “healthcare reform”. My column ended in 2011, but much of that work still stands today, some as useful today as it was then.*

As a result of those columns, I became a resource person for many locals who were struggling with some part of their healthcare. Many were scared or angry with the parts of the system that didn’t work for them. Some were just desperate to find a solution for an incurable disease or life-altering damage from an accident.

One such gentleman was Glenn, a man who had developed a glioma, a tumor that had grown tentacles throughout his brain. He was a well-educated man, an architect by trade, and was frustrated by what he saw as the continual roadblocks to his care. The glioma was inoperable. He had sought second and third opinions. His neurologist wanted to treat him with chemo, but Glenn refused chemo because he felt as if exposure to toxic chemicals might have been the cause of the glioma to begin with.

He first contacted me in 2006, and we stayed in touch, discussing many aspects of his care, until he died in 2012. Throughout those years he approached me with questions, and together we sought ideas and solutions, many of which subsequently ended up in one of my books and several of my newspaper columns. From his surprise when I wrote in one column about changing doctors, to the story I’m about to tell you about seeking help from a bogus cancer treatment center, I got to know Glenn quite well. He became a friend, and I learned so much from our interaction. I was not acting as his advocate by the definition we use today for professional patient advocates. We simply bounced ideas off each other.

While I respected his intelligence and the career he had built, I also learned from Glenn what desperation does to a patient. Which leads me to the topic of today’s post.

About two years into our friendship, Glen’s glioma was growing, and he still refused chemo. He had left his job, and spent his days in search of something – anything – that would make the tumor disappear.

For example, he found a “doctor” online who promised him that if he bought her DVDs, and prayed many times a day, his tumors would dissipate. He spent hundreds of dollars on DVDs. He prayed and prayed. He was so convinced her approach would work, until, as you might guess, it didn’t.

He found several other possibilities of similar import over the next couple of years. He would ask my opinion, and was always disappointed when I didn’t react with his same enthusiasm. My assessment was usually based on cost – not just money, but the cost to his physical well-being and emotional investment, too.

Then one day he sent me a link to a clinic he had uncovered, convinced it offered him THE solution, because it offered him THE cure. Continue Reading →

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Balance in All Things – We Create a World of Good

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Since moving last month, I now live not far from Orlando. Unless you’ve been living under a rock, you know the tragic and horrible events that have surrounded this city during the past ten days. From the killing of a promising young singer, to the mass murder of 49 young people, to a toddler’s death by alligator. I didn’t directly know anyone involved, but I can certainly speak to the pall that has been cast. The horror, followed by the myriad resulting emotions – sadness, dread, apprehension, and certainly the anger…

Contrasted with those events, this week my inbox featured two testimonials for APHA members.

Now – keep in mind that I receive testimonials frequently. Not a week goes by that I don’t get a submission from a member’s client that speaks in very positive and often glowing terms about how that advocate helped the submitter. It’s one of my favorite parts of my work.

But this week, receiving those good words affected me very differently. It was like the heavens opened and the angels began to sing! Because this week, the very good and beautiful words written about those advocates who have changed lives in very positive ways was a counterbalance to the very bad and ugly.

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