Seven years ago this week, I found a golf ball sized lump on my torso that changed the course of my life. After its removal, I was diagnosed with a rare, terminal form of lymphoma. Subsequently I determined I didn’t really have lymphoma. That was eventually confirmed medically, and I have never had treatment.
The fact that my tumor appeared in the month of July played a prominent role in my misdiagnosis.
Why July?
When we need medical care, we need to receive the best care possible. That best care requires a team of professionals playing different roles, depending on what ails us. From doctors and surgeons, to nurses, lab specialists and others, the team must conduct itself in a highly coordinated and collaborative manner to be sure we get the right answers and care. They dance a well-coordinated healthcare tango because each knows the right steps.
But sometimes there’s someone new on the team who doesn’t know how to tango. A new dancer can cause the entire team to stumble or fall. When that happens, we patients suffer.
July brings many new team members.
First, many of the “regular” professionals take vacations beginning with the July Fourth holiday, throughout the summer. That means new, sometimes temporary replacements must step in. They may only know how to waltz.
The second set of new members are recently graduated medical students. Having just completed their studies in May and June, they begin their residencies July 1. Not only don’t they know how to function within the team, but they have barely learned the two-step. A study reported in 2010 showed that counties with academic medical hospitals showed a 10 percent increase in medical mistakes in in July.
So how can we patients protect ourselves?
If possible, avoid medical care in July. In particular, any care that will require you to be hospitalized should be handled either before July 1, or postponed, if possible.
If you can’t avoid medical care in July, then be sure to verify every step with an advocate’s help. This includes double checking any lab work that yields unusual results, which – yes – was the root of my misdiagnosis.
No doubt those professionals who care for us in July have the very best intentions. But doing a tango with someone who only knows how to waltz results in toe-stepping and bad results. If possible, it’s a dance we patients should just sit out.
Regina Holliday’s husband, Fred, age 39, died of cancer in June 2009 leaving his wife, and his two young, beautiful children behind. During their journey through the healthcare system to try to get Fred the help he needed, too many hurdles were put in their way. Their story makes you want to scream.
Among the horrors of their journey was the fact that Fred was transferred from one hospital to another – without his medical records. With no records, Fred could not be treated. Regina attempted to get the records transferred, including returning to the first hospital to try to transport them herself. Instead she was repeatedly stonewalled. Ultimately she was told that she could return to pick up the records in 21 days, and it would cost her 73 cents per page.
None of us can imagine how devastating and frustrating that must have been for her. Fred suffered physically, Regina suffered emotionally. But today that devastation has become her passion and her mission in life.
Regina is not so much a fighter as she is an artist. Don’t get me wrong – the girl can fight! But she fights with the tools only she knows how to use to make her important points. Those tools are canvas, brushes and paint – and talent that just doesn’t quit.
Even before Fred passed away, Regina began her fight by painting a series of murals on the sides of buildings in and around the Washington, DC area, where she lives. Her first mural was called 73 Cents. It’s located at 5001 Connecticut Ave. in Washington, DC. It depicts some of the many horrible outcomes and experiences she and Fred went through to try to get those medical records.
Since then she has painted other murals, and other paintings – enough to do a showing last week, sponsored (supported by) Clinovations, a company known to us in the empowerment business, but perhaps less known to you. Clinovations is working to change American healthcare. They “get” what Regina’s work is all about.
OK. So here’s where I begin to fall apart. Please bear with me….
The largest painting is called Give Us Our Damned Data. It features 19 authors (and yes, I’m included — center to the right). All of us have suffered at the hands of the healthcare system, and all of us have written books about our experiences in hopes of improving the system for others. Here’s a thumbnail version. You can see a larger version here.
You may recognize a face or two. Each of us is holding a tablet with portions of our book covers. Each of these folks (Regina lists them all here) is a colleague of mine. Many I have met in person. We support each other, care about each other, stay in touch with each other. We are members of a fraternity that none of us would wish to share with our worst enemies. But we feel so lucky to have each other.
I shed four reasons worth of tears:
1. I am so proud of my friend Regina for working so hard and sharing her sorrow in such a meaningful way. I know it’s been a catharsis for her, and I know many others will NOT suffer because Fred, Regina and their children did. I’m proud to be her friend, and at being included in her wonderful, poignant painting.
2. I cry for each of the people in the painting. Each of them has lost someone, or almost lost someone to a heinous mistake, impaled by a healthcare system that is supposed to fix and heal. Each book is a catharsis, and each author hopes to spare someone else – maybe you – the pain of the loss of health, well-being, trust, and perhaps a loved one, too.
3. Some tears are post-traumatic stress. Each time I think about Regina and Fred’s story, mine comes rushing back, too. Even though I share my story frequently, recounting the facts isn’t the same as facing the emotions. The fear, helplessness, frustrations – when I first looked at Regina’s painting, I just fell apart. It’s been a year since the last PTSD meltdown. But there have been four more episodes in the past 30 hours. I keep thinking it’s getting easier… but… now I’m not so sure.
4. My fourth reason — strangely enough — is relief. As I carefully studied each of the paintings in the collection, I was hit with a truth that is so fundamental to all of this. MY story is the polar opposite of Regina and Fred’s. They could not get Fred’s records. I GOT MINE! And that’s the point… ! If I had not gotten mine, then I would never have figured out I didn’t have cancer. I would have been treated for a disease I did not have. I would have been debilitated by chemo for no reason. At the end of my chemo, I would have been declared cured of an incurable cancer. But none of that happened BECAUSE I GOT MY RECORDS!
I’m healthy, and happy, and my life has never been better. And my great revelation is that I am all those things because I was able to get copies of my medical records. No one stood in my way or refused me copies or tried to charge me for them. Along with my friend E-patient Dave DeBronkart – we are the poster children for the absolute GOOD that comes from sharing records with patients.
Over the next several years, you will hear discussions about whether patients should be able to access their medical records through the internet, or get copies much more easily than they do today (which, as you can see, isn’t always easy)… please remember this story. Remember Regina and Fred. Remember Dave DeBronkart’s and my good outcomes. It’s called meaningful use. And it’s important.
And then fight your good fight to be sure we can always get those records. They may save your life, too.
• Here is Dr. Ted Eytan’s discussion of the showing, including several dozen photos (and larger versions of the one above.) Please notice all the smiles. Some irony, of course, but the recognition that life does go on, and important work is being done.
When it comes to TV and video, Al Roker provides one of my favorite quotations:
“They say the camera adds 10 pounds. OK. So I figure I must be standing in front of 10 cameras.”
Oh, yes, Al. I know how you feel….
However — I’ve decided to come out of my video-avoidance closet to share the following with you all.
First — my excitement at the invitation a week ago to appear on MSNBC to speak to a problem that I actually cited a few years ago – that July is the worst month of the year to be hospitalized. Why? Watch and see!
So that’s the first one. But if I’m going to jump in to the world of video, I might as well do it with both feet. Many of you know that I am brought in to speak at various conferences and meetings across the US and Canada. I enjoy speaking! So in my attempts to do even more of it, I’m told I need to have a professional video made. So, yes, I finally bit that bullet, too, and have uploaded the online version of the opening here.
It’s not like I’ve never done TV before – I have done local TV on a number of occasions. And broadcast isn’t the problem – ferheavensake, I have hosted a radio show for 4+ years! But video, in general, has just always been a step I’ve avoided.
It’s a simple question, but it has stirred some controversy. It’s the word “friendly.”
Colleague and fellow passionate advocate Bart Windrum got (as my mother would say) his blood in a bubble after reading an article about engaging a patient advocate to help you navigate your healthcare, recently published in a Tampa newspaper.
In a list of tips about how to advocate for someone else, one tip said, “In hospitals ask, in a friendly way, that every pill, every injection, ….”
Bart thinks that’s ridiculous. He believes “friendly” comes across as “Beg. Acquiesce. Place yourself beneath again, some more.”
Bart is an author of Notes from the Waiting Room. He knows what he is talking about. Bart suggests we be business-like. I agree.
Business-like may be a term lost on some who don’t operate in a business environment. So I call it commanding respect. To gain respect, which is so necessary in any medical setting, you must command it. You earn it by your actions and approach.
(Please note — that does not say “demand respect” — I believe that is impossible in any medical setting unless the other person fears you — another post for another day.)
How will you command that respect? By being diplomatic and concise. Start with polite. Let them know you have specific expectations and want accurate information. Earn / command the respect of those who can get you what you (your patient) needs. If you don’t get the information or action you need in a fair amount of time (some actions require seconds or minutes, others can wait a half hour) then become assertive. Never, ever become aggressive unless it is life and death and you are being ignored.
Here’s an example I got from Charles Inlander, a gentleman who was advocating for patients before most realized they needed it. He was in the hospital, and needed a nurse’s help in the middle of the night. He pushed the call button a number of times and got no response. (Does THAT sound familiar!) So finally he picked up the hospital phone, dialed “O” to get the operator, asked for the nurses’ station on his floor, told the person who answered what need needed, and seconds later the nurse showed up in his room. (I love these kinds of ideas!)
What’s your experience? Have you advocated for a loved one in a hospital? Did “friendly” work when you actually needed something? Or did you find yourself having to be more definite and concise?
(as published in the Syracuse Post Standard
