I read a story in my local paper yesterday entitled Internet gives angry consumers new power, which began with a story about a man named Sterling Bishop who was unhappy with the work Pep Boys had done on his car. Mr. Bishop made a video showcasing the shoddy work, put it out on You-Tube, and finally got Pep Boys’ attention. The point to the story was that the internet can be used as a tool to balance the vendor-consumer equation because it allows the “little guy” to take on the vendor-goliath in a very public way.

As I thought about it, I realized that is just what William LLoyd Sheely is doing. Mr. Sheely contacted me several weeks ago to make me aware of his blog about his mother’s death from cancer when, Mr. Sheely claims (and provides proof with scans of documents on his blog), nobody ever acknowledged that his mother had cancer.

Mr. Sheely’s blog is a rant against the doctors and facilities that treated his mother. And he names them all. There’s no question about who the offenders were. Doctor’s names. Hospitals names. Right there in black and white.

There are some real commonalities between Sterling Bishop and Lloyd Sheely. Except for one thing. And that’s the advice I’ll provide for you today.

Having a clear goal for your online complaint can make all the difference in outcomes. In the case of Sterling Bishop, he knew what his goal was — he wanted his car fixed correctly and he wanted Pep Boys to make it right. Before he went public on the internet, they had been unwilling to do so. Now, it seems, the car is fixed.

Mr. Sheely doesn’t have a clear goal, and as a result, he won’t receive the same satisfaction. Is his goal to put the doctors and hospital out of business? I hope not, because too many others who are being helped by those doctors and that hospital would be hurt. Is his goal to get them to acknowledge their errors? Even apologize? Perhaps. But I can’t find that request anywhere. Does he think he should be entitled to money? Or forgiveness of bills? In his heart, he probably hopes it will bring his mother back to life, but of course, that can’t happen.

I wrote to him and asked him what his goals were, but his reply to me wasn’t much clearer. Perhaps his blog is simply a catharsis. Hard to tell.

Again — that’s the point. If you feel like your health or that of a loved one has been wronged by a healthcare provider or facility in some way — by all means — complain! But be clear about your expectations of those you complain to. State your goals clearly so they know what it is you want them to do. They can’t read your mind, and you can’t expect them to read between the lines either.

Stating your goals is also a way of managing your own expectations. If you don’t, you’ll never find the satisfaction you seek and your frustration and anger will never be resolved.

That’s good consumerism — and — it’s sharp patienting. It’s Patientude* at it’s finest.

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*Patientude: the attitude and skills that get you the health care you deserve

Since my post yesterday about the article in the Chicago Tribune about doctors apologizing, a handful of readers have sent me an email asking whether the doctors involved in my misdiagnosis debacle ever apologized to me.

Good question! and the answer is yes… and no…. Truth is, I didn’t give them much choice.

There were three doctors I held accountable for my misdiagnosis and resulting almost-treatment fiasco. At the end of my odyssey, I wrote a long memo to all the doctors involved in the process — the good guys and the bad guys. It was addressed to the mistaken ones, and copied to the others.

The three I was most upset with were the two pathologists and one oncologist. If you’ve read my story, you know I was told that that two different labs had confirmed my diagnosis of a rare, aggressive lymphoma — as I understood it — one lab reviewed the biopsy, then forwarded it to another lab for a second opinion. From there, the information was forwarded to the oncologists.

So here’s how each responded:

Pathologist #1 is Doctor E. She heads up the first lab that looked at my biopsy and when I followed up my memo by phone about 10 days later, I did have a good discussion with her. She did apologize for the mistake. She also told me about the protocol used to transfer a case from one lab to another, because I couldn’t understand how two labs could get it wrong. It turns out that “transfer protocol” calls for lab #1 to tell lab #2 what their conclusion is, i.e. “Here’s a speciman. We think it’s X. What do you think?”

OK — how many of you took basic science in 6th grade? Do you remember learning about blind studies? I almost fell down when Dr. E told me what the protocol was. Clearly, there is NO request for an objective second opinion! All the second lab is being asked is whether they can confirm the diagnosis — they are not being asked for a second opinion. And the mere suggestion of a certain diagnosis then influences the confirmation. There is nothing objective about it at all.

Pathologist #2 is Doctor R. He heads up the second lab that took a look at my biopsy and confirmed the same as lab #1. He was actually quite open about how the mistake had been made and I learned two things from him.

First, he blamed the fact that because my biopsy had arrived at the lab on July 1, a weekend and the start of the July 4th holiday, they had nobody in the lab with enough experience to review such an unusual biopsy. (Take note — no matter how much the health literature written by doctors will tell you this isn’t true — when it comes to any kind of elective healthcare, always avoid summer holidays and end-of-the year holidays if you can!)

Second, he told me that in med school, he was taught that no doctor is perfect; to expect to make mistakes. But if a mistake had to be made, always err on the side of making sure someone WILL be treated rather than erring on the side of not treating a patient who needs it. OK. As much as they ended up being a nightmare for me, I can buy that.

The oncologist - Dr. H — was another story. In the memo I sent to all the doctors, I most chastised him, and suggested — no, accused — him of insisting I begin chemo because it was the only way he could make money off me. Surprisingly, he never even replied to that accusation (and it still stands, as far as I’m concerned.) However, what he did do was send me a three page letter, coming down on ME for “unfairly impugning my professional reputation.” He went on to explain why he had been RIGHT to insist I begin chemo (when there was plenty of evidence pointing to a possible misdiagnosis.)

I sent a reply to Dr. H, pointing out that, in fact, he had been the one to err, not me, and if anyone was impugning anything, it was him. I also stated that I was only looking for apologies, and for a zero balance on my account (why should I pay for their mistakes?) and was not intending to file any official complaints or lawsuits.

A few weeks later, I received a follow up letter from Dr. H., with a kinda-sorta apology, phrased like this, “I’m sorry if you were unhappy with your experience with me.”

Yeah, OK.

So that’s the story. For those of you who read this blog regularly, or read my columns or listen to my radio show, you know I don’t dwell on any of it. I use my misdiagnosis as the springboard for my work — but dwelling on the details isn’t something that moves anyone forward except as the details present good examples for the points I try to make for sharp patienting.

And perhaps that’s the whole point about extracting an apology from a healthcare provider who has wronged us. When we know that someone else has recognized a mistake, and truly feels bad that it has happened, then we ourselves can begin to move on. It’s a form of closure. It allows us to begin putting the situation behind us to deal with whatever our new reality is.

My advice to patients about doctor apologies is this: if you know you’ve been the victim of any form of medical error, and you don’t see those providers involved stepping up to the plate — then ask them to! If it makes the squirm? Well — that’s THEIR problem, not yours.

Insist they own up to their mistakes. If that involves an apology, so be it. And if you have to be tough, even bitchy — then go for it. Because at the end of the day, YOU are the one who must move on. And insisting someone else take responsibilty for the actions that YOU must pay for can be very empowering.

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P.S. to the Joint Commission: there was nothing “unanticipated” about the outcome of the mistakes made by these doctors. Nothing at all. The only thing unanticipated was how I would react by being misdiagnosed. I dare say none of the doctors involved ever thought I would change careers to help right the ship of our failed American healthcare system, now did they?

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Doctors at the University of Illinois Chicago Medical Center are being encouraged to admit medical mistakes and apologize to their patients, so states an article by Judith Graham, published in this week’s Chicago Tribune.

Good! And I can’t state that strongly enough.

I’ll add, it’s about time, so what took so long, and one down — what about the other 6,499 hospitals in the US? (OK, a few encourage apologies — see below.)

Ms. Graham did an excellent job with the article. She presents the many aspects of the history of physician apologies, why doctors have, or haven’t, apologized over time, and provides very substantive quotes from various experts in the field. In effect, egos and fear of retribution in the form of lawsuits have stood between physician mistakes and patient communication over time.

No surprise there.

A few points stand out from the story — worthy of being shared. First, that the Veterans Administration and hospitals affiliated with Harvard Medical School encourage their staffs to tell patients about errors, provide an apology — and (very importantly) explain what they will do in the future to prevent a similar mistake. As someone who has been burned by a medical error, I can very much appreciate that approach. I may have suffered, but I can feel a bit better about it if I know they will take steps to be sure it doesn’t happen again.

Second, that the Joint Commission on Accreditation of Healthcare Organizations (the group that oversees the credentials of hospitals, formerly called JCAHO) also encourages fessing up. That’s good, too.

But in the midst of the Joint Commission’s recommendation, they have also developed a new euphemism for medical errors. Honestly — this is so ridiculous, it made me laugh out loud! God forbid we should call a medical error spade a spade — they now call them “unanticipated outcomes.”

What a cop out! Medical mistakes are not “unanticipated” outcomes at all! Mistakes are just that — mistakes. If a doctor makes an incision in the wrong place, there is nothing unanticipated about it — it’s just a mistake. If a doctor prescribes the wrong drug or the wrong dose of the right drug, there is nothing unanticipated about it — it was just plain wrong. If a doctor misdiagnoses or orders the wrong treatment — it’s an error, plain and simple. If a doctor doesn’t stop to wash his hands, and his patient acquires an infection — c’mon — it’s not at all “unanticipated!”

And — when any provider makes a mistake, s/he can most certainly anticipate the outcome! S/he can anticipate that it will cause a problem for the patient. S/he can anticipate that the patient will take longer to heal — or might even die! S/he can anticipate that the patient and his/her family will be upset. And on and on.

OK — you’re right. Nobody plans to make a mistake. But that doesn’t mean the mistake was unanticipated. No way. So — Joint Commission — why don’t you call a medical error exactly what it is? It’s a medical error!

All this reminds me of that book that came out about 20 years ago about everything I needed to know I learned in kindergarten. My parents (and kindergarten teacher) taught me to be honest, to come clean about mistakes and above all, to apologize to the person I wronged. I wasn’t allowed to use my fear of punishment as an excuse, and certainly I was never allowed to let my ego get in the way…. not a chance….

So, doctors — you have absolutely no reason to cover your backsides by non-communication and lack of apologies any longer. Big name organizations are providing this message — no matter what they call a mistake or — excuse me — an unanticipated outcome — apologize and communicate!

Patient trust is already tentative at best. Non-communication is no longer acceptable, regardless of whether it’s your ego or your insurance company whispering in your ear. Stop making excuses, stop covering up, stop pretending the consequences of your errors were “unanticipated.”

Be human. Be apologetic. Be humble. Be available. You’ll sleep better, too.

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Note: see follow up post: Did My Doctors Apologize?

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OK — here’s a pet peeve — thought I’d share it with you on a late summer Friday …

Here’s what sparked it this morning:

And joining Time Magazine is MSNBC:

Or one more from MedicineNet - one of my favorite online health references:

So can you tell what bugs me? Here it is: Somehow the media is obsessed with telling us how we can lower, increase, or even “pinpoint” our risk of death, when in fact we have no way of influencing our risk of death at all!

No matter what you eat, or don’t eat, drink or don’t drink, participate in, or don’t participate in, you cannot affect your risk of death. You can’t increase it or decrease it because (like taxes, as they say) — your risk of death is always 100%.

Yup! 100% There’s not a thing we can do to influence that one way or the other. Truth is — there’s no risk involved at all!

Am I being picky? Probably. But in the spirit of accurate reporting, it seems like there might be better ways to phrase it.

What should they use instead? How about being more purposeful, such as “the ability to postpone death.” Another way, “postpone the onset of death.” Or if they are just dying to use the word “risk” (so to speak), they could use “the risk of earlier death.”

As I said — it’s just a pet peeve. BUT, I also think it ties in to our mentality and our attitudes. If what we are trying to do is stay healthier and we continually try to lower our “risk of death”, then truly, we may die earlier as a result of beating our heads against impossible odds. Even the bookies won’t touch that one.

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