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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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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Survey Says! The Results Are In

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We privately paid, independent, professional patient advocates “tend to be older, white, female, more highly educated, and have other medical training or past careers in related professions.”

…. or at least that is one conclusion drawn by the surveyors — those who built, issued and analyzed the first National Health and Patient Advocate Survey.*

Both private, self-employed advocates, and employed advocates (hospitals, insurers, employers), were surveyed. Whether or not you were one of the folks who took the survey, if you have any interest in patient or health advocacy as a profession, you’ll be interested in the results.  They were issued June 30 – you can download the report from here.

But that’s not the best news from the results… The best news is…

(drumroll please!)

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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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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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