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, Glenn’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. By the time I knew anything about it, he had already sent them results of several blood tests they insisted be performed, plus the $10,000 deposit required for them to provide their assessment. (Yes – you read that correctly – $10,000.)
Long story short, Glenn ultimately made the decision not to go to the clinic. That decision was made after he had spent close to $20,000 and they still wanted more tests done before they would see him.**
Fast forward to today: Glenn’s story came to mind as I read a story published last week in the Boston Globe about a man who has pursued stem cell transplants all over the world to cure his debilitation from a stroke he suffered many years ago. Such transplants are not yet being performed in the US or Canada, but they are available in private clinics in other countries. The man has paid almost $200,000 for treatments to date. Unfortunately, there has been no improvement in the problems caused by his stroke, new tumors have formed on his spine, and he has developed additional paralysis.
As advocates, we run into desperate patients and family members every day. There is no doubt that just like these two men who were so intelligent and respected in their professions prior to their illnesses, we encounter others who lose their perspective and ability to make objective and informed decisions in the same ways they might have before they became sick.
Or – do we have a right to question these kinds of decisions? In their desperation, and when they have the means, is it our duty to stand in their way? It’s their money, and their health, after all.
But then, how much regard are they giving to their families who might be bankrupted by such pursuits?
Where, if anywhere, do we draw a line? How frank do we need to be, and when?
Would you provide your opinion? Or stand in the way? Or would you hold your tongue? Would you provide a reality check? Or let them continue with wishful thinking as they drained their family’s financial security?
The answers to this question should reflect the nexus of ethical responsibility and common sense, of being sure we don’t make decisions for our clients while we give them the right tools to make their own informed decisions.
But it’s difficult to account for desperation and wishful thinking.
Have you dealt with patients who are desperate? Have you drawn that line? Please share stories below.
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**(While doing follow up research for the second edition of my book, You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Healthcare You Deserve), I learned that the FDA closed them down in 2013 in the midst of investigations and arrests. According to their website, they are still closed. The entire story is one of patient desperation, fantastical promises, DMSO, Laetrile, and Prince Lazarus of the Principality of New Utopia, yes seriously, all found in my book.)
