Sometimes life just sucks.
At least that’s my conclusion after hearing recently from too many friends who are suffering various horrible things – health related, money related, death related, job related. And that’s just the friends who have shared their sucky situations.
Some of those friends are patient advocates, and among them are some very difficult health situations – cancer, a brain tumor, a stroke, a car accident… sometimes affecting themselves, other times affecting a loved one – a spouse, a child, a parent. I’m stunned, floored, worried, and my biggest frustration is that there is not a darned thing I can do to help any of them except to think good thoughts for them.
But then I get thinking more about their situations and I wonder…. are they prepared for what lies in front of them? I can almost guarantee they are not, and that they never even considered they would reach a point when they were not at the tops of their games, able to help clients and keep their practices growing. None of us ever expects to be faced with such debilitating hurdles; therefore we are rarely prepared to handle the consequences.
What are we supposed to do when life gets in the way?
This is the question that has plagued me as the director of a professional patient advocacy organization since it was first launched. It’s a question that usually comes from someone who is just thinking about becoming a patient advocate, one who hasn’t yet gotten his or her feet wet in our growing puddle of advocacy, ethics and best practices, although sometimes it comes from a more seasoned, yet not-yet-financially solvent advocate.
It is asked in a hopeful manner, as if it is the answer to prayers – or at least payment.
It’s at the very least naïve, and at the most it shows a lack of understanding of the realities of the world of services we offer to clients who need us, but are hesitant to hire us.
In 2012, I blogged about this very topic. One ticked-off reader then attacked me on Twitter. A day later, both she and another member of The Alliance of Professional Health Advocates left the organization, both citing the post.
But it was good advice then, and it’s still good advice today. So at the risk of provoking additional readers, I’m going to wade into those waters again. Since most of us are self-employed, in the process of either starting or growing a professional practice, you’ll find that this advice will serve you very well, even if it IS maddening or frustrating to you.
Why now? Why this timing? What is it about this time that compels me to offer this advice again?
My dad retired in the 1980s. In addition to his pension he had also earned health insurance coverage for the rest of his life. Over time, as you can imagine, the actual value of that insurance became more and more evident; In all likelihood, it was a many-years-of-life saver, because he lived until 2012.
But then, I think his health insurance may have killed him, too.
Dad retired early at the ripe old age of 60, because when he was 59, he was diagnosed with prostate cancer. His resulting surgery did not successfully remove all the cancer cells, so Dad then dealt with that cancer for 24 more years. His cadillac health insurance, which covered everything you can imagine – and then some – and which required only a $3 co-pay for anything, served him very well for decades.
Or did it?
In fact, a review of Dad’s last two years of life indicates that having that excellent health insurance in all likelihood contributed to his death.
They’re getting worse. Or at least it feels that way.
I’ve just spent a week away, traveling across the country for both business and pleasure. While on the road, I’ve talked to dozens of people I’ve never met before. When the subject turned to the “what do you do for a living” question, and I answered, almost every one of them regaled me with a story – one story more surprising, frightening or tragic than the next. Either they or a loved one have been caught short by the medical care system, leading to inconvenience at the least, or debilitation, a huge financial hit, or even death at the worst.
There’s nothing new about the stories. I know you hear them frequently, too. Sadly, it has become a bigger surprise if someone doesn’t have a story than if they do.
But what disturbs me the most about this can be summed up in one word: Volume.
Now, I have no statistics to back this up, but it seems to me that I’m hearing MORE bad, sad and ugly stories about care AND cost. Or maybe it’s just that peoples’ stories are more heinous or abhorrent than they once were.
Here are the stories from last week alone:
“But she is so upset with me now!”
That was the response from an advocate who wrote to me after an unpleasant encounter with a former client. Even though they had not worked together for more than a year, the client had contacted the advocate to ask for copies of her medical records. The client knew the advocate had acquired them when they worked together, she needed them, and she didn’t want to pay for them again.
Fair request, certainly. The advocate should have been able to turn them over to the client quite easily, either electronically or on paper….
Except that once their work was finished and several months had passed by, the advocate had deleted them from her computer. As she explained to me, she didn’t want someone hacking her computer and getting records they should not have, so once she deleted them, they would not be able to do that.
I asked the advocate, “Didn’t you back them up somewhere first? In the cloud? or on an external hard drive not connected to your computer?”
(Channeling the Plain White T’s here…)
The book is a childhood classic, Shel Silverstein’s The Giving Tree. It tells the story of a tree that gives all it has to a boy as he grows from little boyhood to adulthood. From providing shade and a place to climb, to allowing the boy to sell the apples it yields, to finally letting the boy (now a man) cut it down to build a house, and later make a boat out of it. In the end, when the tree has nothing left to give, “Boy” simply sits on the Giving Tree’s stump to rest.
Not everyone is aware of the great controversy that surrounded The Giving Tree when it was published. Such diverse groups as those who study children’s literature, Christian groups, and psychologists still today debate the meaning of the book. Some believe it is the perfect example of how one can show love through giving. Others believe the boy became abusive to the tree because all he did was take, and never gave or shared. Still others think it is one of the saddest children’s books ever written.
I was reminded of this book recently after hearing from Natalie (not her real name), who was resigning her APHA membership. She can no longer sustain her practice, and had to close it down because, as she explained, she just can’t find clients who will pay her to advocate for them.
I asked Natalie what marketing she had tried. Her reply: “I don’t have time for that. I’m too busy helping the people who can’t afford to pay me.”
Yes, sadly (although rarely) a patient advocate does more harm than good.
I was reminded of this recently when I heard from one of our Alliance members who was picking up the ball from another advocate (not an APHA member) who had totally messed up the work a client-patient needed to have done – an advocate who had actually made the client’s situation worse.
The problem-creating advocate had been working with her client through a hospitalization. As far as we know, that work went well. Her core business is medical-navigational advocates. However, later, when the client’s hospital bill arrived, the client asked the advocate to help him appeal several items the insurer had denied, then to attempt to reduce the hospital bill.
I don’t know all the details. What I do know is that the advocate in question had never filed an insurance appeal before, and had never negotiated a hospital bill before, but she attempted to do both for this client, and she failed at both.
The client, frustrated and upset, reached out to the APHA member-advocate to ask for help. What the member told me was that it was too late. Only one appeal was allowed, and the hospital billing department had dug in its heals because the first advocate had become verbally abusive.