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?

Did you command respect?

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In her most recent article, she points to doctors’ and nurses’ scrubs, coats, ties — their clothing.  MRSA, C.Diff. and other infectious pathogens cling to the fabric and get passed from patient to patient.

So — imagine that for a moment — the doctor brushes you with his white coat, that very item that represents his/her MD-dom — and passes an infection on to you which will make you very, very sick, or even kill you.

From Dr. McCaughey’s article:

The problem is that some medical personnel wear the same unlaundered uniforms to work day after day. They start their shift already carrying germs such as C.diff, drug-resistant enterococcus or staphylococcus. Doctors’ lab coats are probably the dirtiest. At the University of Maryland, 65% of medical personnel confess they change their lab coat less than once a week, though they know it’s contaminated. Fifteen percent admit they change it less than once a month. Superbugs such as staph can live on these polyester coats for up to 56 days.

Do unclean uniforms endanger patients? Absolutely. Health-care workers habitually touch their own uniforms. Studies confirm that the more bacteria found on surfaces touched often by doctors and nurses, the higher the risk that these bacteria will be carried to the patient and cause infection.

According to Dr. McCaughey, hospitals used to provide laundered uniforms and scrubs to their personnel, but that practice has gone by the wayside.

So, it seems like it would be a good practice to bring back.  Especially since Medicare is no longer paying for care for patients who acquire infections in the hospital, it seems that laundering that clothing would be far less expensive than having to eat the cost of caring for so many infected patients.

Today’s second warning comes from Bottom Line Health, one of my favorite publications.  I like Bottom Line because it doesn’t accept advertising, and it always brings in multiple points of view, e.g. the best of Eastern and Western medicine and ideas.

This notation comes from Jean-Yves Maillard, PhD from Cardiff University in Wales, UK who tells us that those disinfectant wipes we use on surfaces to kill bacteria (think clorox wipes, or those wipes they put near the shopping carts at supermarkets) may actually just spread those germs around.  We may not be killing those buggers at all!  Dr. Maillard suggests instead that we use one wipe per surface — or one swipe per wipe.

When it comes to these killer germs, we patients just can’t be too careful, can we?

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Never Events, as defined by the National Quality Forum, are those events which should never happen to a patient.  There are 28 errors on the list ranging from wrong site surgeries to drug errors to crimes committed by medical professionals.

Not included on the list from the NQF are HAIs (hospital-acquired infections).  There may be many reasons for this, but there are many groups and organizations that believe HAIs like MRSA, C.Diff and VRE SHOULD be included on the list.  Many of them, although not all of them, are preventable.

Regardless of what the left hand is doing (NQF), the right hand of payers (Medicare and many insurers) have decided that these infections will no longer be covered.  That means that any hospitalized patient who contracts, or at least presents with, an infection during a hospital stay may not be charged for the extra cost of treating the infection, nor will the hospital be paid by Medicare or many of the health insurance companies.

I don’t have the expertise to say whether this is right or wrong.  On the one hand, I believe it’s absolutely necessary to force hospitals to figure out ways to decrease the numbers of patients who contract these infections, estimated to be upwards of 5 million patients per year.

On the other hand, I know that sometimes patients arrive with pre-existing infections that may be apparent when they are admitted.  Can they be tested upon arrival?  Of course they can — although some hospital personnel point out how expensive that is, and that insurance won’t cover that either.  I have no doubt that there will be some problem for patients that crops up from this new ruling.  Hospitals will refuse to admit patients at risk, or they will discharge them too early so they can — at least in the paperwork — ignore an infection just as it begins.  Hospitals will do whatever they need to to protect their *sses — and it will be at the expense of patients.  Unintended consequences, all based on money.  What else is new?

During the past few days, a dialogue has taken place… wait… make that a diatribe…. on the blog of a certain “buckeye surgeon” where complaints and barbs have been thrown at a newspaper reporter who wrote about this October 1 date for reimbursement stoppage.  On just about the same day, the Wall Street Journal printed an article by Dr. Betsy McCaughey, founder of RID (Reduce Hospital Deaths) that gave some statistics about hospitals that have addressed infection problems — and have successfully reduced their numbers, one (claims) to 0 patients over a span of years.

So –I pulled some quotes from Dr. McCaughey’s WSJ article and posted them to the blog — and you would have thought I was the devil-incarnate…. whoa!  A regular lightening rod!  All those doctors so quickly turned their ire on me.  And I thought angry patients got worked up!  They can’t hold a candle to posters like “white coat” and “anonymous” who — God forbid — don’t even use their real names.

No — they attacked me one after the next.  In fact, it began when I suggested that SOME hospitals were actually trying to help patients!  SOME hospitals are actually asking their doctors and personnel to adhere to a checklist that — (you won’t believe this) — actually prevents infection!

Oh — one even attacked me for not being grateful that I was misdiagnosed with cancer.  She told me I should not have been upset at the misdiagnosis — I should have been relieved that I didn’t have it.  (My standard reply, which I didn’t bother with is — “gee — you didn’t get hit by a car today.  Are you relieved and grateful?”)  Of course — what on EARTH does this have to do with infections?  I’m not sure.

What’s the bottom line?  What can we learn from this?  Honestly — I do NOT believe that including HAIs on the list of never events Medicare and some insurances will no longer pay for was the right approach.  While some infections could have been listed and it would have been helpful, instead I think Medicare has only thrown down the gauntlet for hospitals to go underground.  Patients will pay the price in even worse health problems.  We must be more vigilant and be prepared to stand up for ourselves and our loved ones, and once October 1 rolls around, that will be even more difficult.

What the Trisha-bashing on the Buckeye Surgeon’s blog has shown me is that when we patients begin to stand up for our NEED for decent healthcare, we become the enemy.  The point I tried to make on a couple of the blog posts was that I think patients and providers need to remember that we have the same goal — improved patient care.  But those folks didn’t want to go there.  They just wanted to bash me.

I pray none of them is ever hurt by a medical error.  I hope none of them ever suffers at the hands of a medical practitioner who is probably just in a big hurry because he doesn’t get reimbursed well enough for his work.  I hope they don’t lose a loved one, like I did, after she acquires MRSA.

But mostly I hope they will stop taking their frustration out on the messenger.  Afterall — excuse me — I THOUGHT we all had the same goal?

Don’t we?

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But most days I don’t even think about him. So two reminders in two days? That’s a double whammy.

The first came yesterday as I participated in the Susan G. Komen breast cancer Race for the Cure. There were almost 8,000 participants, among them several hundred breast cancer survivors. I had the opportunity to speak to a handful of them, and when they were particularly happy about how successful their treatment was, i would ask them who their doctors were.

One woman shared a litany of doctor’s names, among them was the same oncologist I had dealt with. She spoke in glowing terms about all the other doctors, but his name was just a part of the list. Nothing good to say — he was just a participant.

I didn’t comment. I didn’t ask her about her experience with him. I have never shared his name publicly because my goal has never to cast dispersions on him personally. I will confess, however, that if someone is seeking a new oncologist for a second opinion, or for referral purposes, and they have told me he is under consideration, then yes — I have shared my experience. Have I had an influence on which patients have chosen to see him? Yes, I’m sure I have — but not much of one.

Then this morning, I found this article from the New York Times, entitled, “Doctor’s Start to Say ‘I’m Sorry’ Long Before ‘See You in Court.’ And there it is again — that feeling…. argh. He held my life in his hands, and he was so ready to treat me with deadly chemicals for no reason….

One aspect of my dealings with him continues to confound me. He never apologized.

Once my misdiagnosis was proven by the National Institutes of Health, I contacted all the doctors who had participated in the odyssey. Of those who had made mistakes and contributed to the errors, I asked for apologies. I made it clear I was not interested in lawsuits.

All the doctors who had contributed to the mistakes apologized — except the oncologist. In fact, he sent me a long letter outlining why he had done the right things. Never mind the fact that he had never read the results of lab tests indicating one more test was being run — yet he had never looked at the results. Never mind the fact that when I told him I wanted another opinion, his answer to me was “what you have is so rare, no one will know anymore about it than I do!”

There is much in the medical literature these days about the positive outcomes when doctors own up to the mistakes they’ve made. This article from the NY Times is one example. Patients heal better, fewer lawsuits are filed, there are so very many aspects of improved health and service that come as a result of professionals taking responsibility.

It’s too bad for this particular doctor that his ego won’t allow him to do the right thing. On the other hand — had he been more forthcoming, perhaps I would not have been angry enough to make sure these kinds of problems wouldn’t happen to other patients?

We’ll never know. But I sure as heck hope that, as time goes on, he’ll realize his ego is getting in the way of his competency. A good doctor is a decent human being, too. In my opinion? Until he learns to own up to mistakes, he’s not much of doctor.

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Prescription drug ads will be on TV for a long time. People may be objecting, but pharma is making a lot of money from them. I expect we’ll see many more of them, not fewer.

Truth is — if viewed in the right way, they can be useful. Unlike the dozens of anti-pharma folks who call for the demise of those ads, I say — if you can’t beat ‘em, then learn about ‘em.

And now, my friend Kim Witczak, founder of Woody Matters, has teamed with Consumer’s Union (non-profit publishers of Consumers Report) to petition the FDA to make these ads more helpful to consumers. It’s an idea borne of Kim’s wish to make drugs safer for Americans, based on the death of her husband, Woody, whose side effects from Zoloft caused him to take his own life.

The idea is that many side effects are unreported by drug companies, and the FDA can’t know about them unless those who take the drugs report them. (Don’t EVEN get me started on how that happens!) The proposal / petition asks for all pharma drug ads to include an 800 number and web address to report these problems as a part of the ad or commercial. Kinda like the warning on cigarette packaging — but even more useful because it’s a way we patients can really take action.

MedWatch is the FDA’s process for consumers to use to report their negative side effects and outcomes, but most consumers don’t know about it. The toll free number and web addresses already exist for reporting. (See below for that info.)

Consumer’s Union is hoping to garner 50,000 signatures — and you can easily sign right here online. You can take 30 seconds to say YES! to the idea of adding these two ways to report problems with drugs. Just follow this link to have your say.

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Do you want to report side effects, problems or adverse events for a drug you take to the FDA?

Link here to MedWatch.

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Here are the topics I’ve covered, and links so you can find them:

What about Nataline?

The 17-year-old who got caught in the crossfire over insurance coverage, then died from liver failure… Would universal insurance have saved her?

Is Your Family Together for the Holidays?

Why not talk about healthcare issues? Recording a family history can be helpful to all blood relatives.

Do You Have a Flexible Medical Spending Account?

You may have to use it up before December 31 — or you may have until March 15. Here are some ways you can — or can’t – use that money.

An Ounce of Prevention…

Costs much less than that pound of cure. Why not stay healthy and save money, too?

Sure enough… plenty of empowered patient reading for these quieter times between the holidays. If you think of a topic you’d like me to cover, then contact me!

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The question asked by the author, David Armstrong, was whether patients have a right to know about any financial ties doctors have to the treatments they recommend. We discussed that topic last week while he was researching for his story. I told him absolutely I believe patients have a right to know, but it’s not so easy as just asking the question.

What I learned from his column is that there is a proposal in Congress called the Physician Payments Sunshine Act of 2007 that will require companies to publicly disclose any payments of $25 or more to doctors. I also didn’t know that the American Academy of Orthopaedic surgeons has mandated, beginning in January, disclosure of any arrangements made between a surgeon and a company which will relate to treatment. So, for example, if you need your knee replaced, and the surgeon stands to profit from the new knee parts — s/he will need to disclose that to you.

Love it! Both are grand steps forward toward transparency and disclosure…

My contribution to the article was a response to the question whether patients should ask their doctors about financial relationships that might affect their treatment …. my answer might surprise you…. (and you’ll have to read the article to find out why!)

Then, when you’re finished, you’ll be interested in this post, too.

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My friend and colleague Linda Lowen has become the About.com guide for Women’s Issues. Her new guide site launched about one week ago. Of course, women’s issues are people issues, and health care consumerism and patient safety are people issues, too.

If you have interest in a variety of women’s topics, many of which you may not have considered, some of which you’ll want to cheer, and more than a few that might make you go “hmmmm,” then check out — better yet, BOOKMARK — Linda’s new guide site at About.com. I promise you you’ll be fascinated.

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I’m leaving Monday for Sarasota, FL — visiting parents (Happy Birthday Mom!) and teaching three patient empowerment workshops while I’m there. If you’re anywhere near Sarasota and want to come by — the more the merrier! I promise you real tools that can help you. Contact Adult and Community Education for the Sarasota School District.

I do love getting out and speaking to groups — patients and providers. If you have need for a speaker, I keep a speaker resume online. Check it out.

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Speaking of workshops, I spent Thursday evening teaching my “Diagnosis Detective” workshop. GREAT group of people — very participative. On the way out, one of them reminded me of a saying I have heard before: What do you call a doctor who graduated at the bottom of his class? (The answer: “Doctor”) ouch.

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Some of you know I have a “looking for” section to this blog. I get contacted by a variety of people, mostly journalists and producers, looking to make contact with patients to help tell their stories. One posting this week has not been too fruitful, so I’m going to mention it here. If you are anywhere in Central New York State (upstate, not the city!) and are an angry patient who wants to participate in a documentary, the producers would like to talk to you. Learn more on the Looking For…. page.

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A handful of people have asked me about the launch of AdvoConnection. It has been delayed (yes, I really do need to update that blog, too). You’ll know why in just a few weeks — a BIG ANNOUNCEMENT! that I can share with you then. I hope.

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Tune in again next week for “From the desk of….” ! (OK. well. maybe.)

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That frustration is once again sparked in this report from the Hartford Courant. Fifteen year old Mark Tsvok, injured in an auto accident in 2004, died from his injuries as a result of the misdeeds of Dr. Daniel H. Hechtman who made one misstep after the next in his treatment (or lack thereof) of the teenager.

After a series of investigations and hearings, Dr. Hechtman lost his license to practice anywhere in the state of Connecticut.

So what did he do?

He moved on down the road — to New York — where he is now a pediatric surgeon at Maimonides Medical Center in Brooklyn, N.Y.

From the Hartford Courant: “For years, the 47-year-old Hechtman held two licenses – one in Connecticut and another in New York – and the action of regulators in Hartford appears to have done little or nothing to inhibit him from treating patients in a neighboring state.

There is no record of what happened in Connecticut on Hechtman’s physician profile in New York, a state-sponsored service designed to flag doctors who have run into disciplinary trouble.

Hechtman’s profile says he has had no New York-based disciplinary actions against his license. Under a heading for out-of-state actions, it says “none reported.”

….. Even though Connecticut reported the settlement to the National Practitioner Data Bank and the Federation of State Medical Examining Boards – two national services designed to spread information about medical misconduct by individual doctors – it is virtually impossible for members of the public to find information about his track record.

Hechtman shows a clean bill of professional health not only on the New York site but on commercial doctor report card sites, such as Health Grades. “

Thus — the crux of the problem. As the reporter stated, “It is virtually impossible for members of the public to find information about his track record.”

So What Can Patients Do?

Empowered patients know to look for information about specific doctors before undergoing any type of difficult or invasive treatment — but — if that information isn’t truly available, how can they do so?

I did a little investigation on my own. I checked in with the State Board in Connecticut — Dr. Hechtman is still listed there, although it says his license expired. There is a way to get to disciplinary information — although it took some real doing to get there. Here’s a link to the basics:

http://www.physicians.dph.state.ct.us/web_public/web_public.show#47505

I could find nothing at all on New York State’s disciplinary listings. And HealthGrades made it impossible to even find a listing, much less have the right information.

Here’s my suggestion. If you know you will need surgery, or any kind of invasive testing or treatment, find out how long your doctor has been practicing in your location. If the doctor has been in your location for, say, 10 years, and you look him/her up online and find out there is no disciplinary action or lawsuit, then there is a good chance (although — who knows?) that doctor will do the job for you. The 10 years shows a track record over time. Even if that doctor had problems before 10 years ago, s/he clearly did not lose his/her license as a result — in your location. That’s not to say s/he didn’t lose it in another state more than 10 years ago, however.

You might have to consider the age of the doctor. This doctor looks to be in his 40s, so 10 years would not be out of the question. If the doctor is only in his/her 30s, you might need to make an adjustment of your expectations.

If the doctor has been located where you are for fewer than 10 years — or if you find out your doctor practiced in another located, too (as in Dr. Hechtman’s case) — then begin looking specifically in other states, perhaps starting with nearby states (New York is right next to Connecticut. One could also look in Massachusetts and Rhode Island).

The bottom line is that it isn’t easy to find this information, and in some ways, you may need to trust your intuition. And of course, an emergency situation will make much of this a moot point.

Better communications via the internet will begin to remove these dirty doctors from practice — but it will take diligence, and a website that is truly willing to step up to the plate to expose them — before it’s particularly useful for patients.

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If you have been diagnosed with non-Hodgkin’s lymphoma, there may be a cure for you that your oncologist hasn’t even mentioned to you. Yes, I said a CURE. Not just a treatment. A cure.And the reason you don’t know about it is because your oncologist won’t make any money from it. Since he can’t profit, you won’t be cured. Seriously.

Here’s the article I’m referring to, and when you read it, you’ll see why it angers me so. It’s from the New York Times.

It regards numerous patients, all late-stage non-Hodgkin’s lymphoma patients, all of whom had already suffered through chemo, and were then given a shot of either Bexxar or Zevalin, and never needed treatment again.

Both drugs are FDA approved. Both are readily available. So why don’t oncologists give them to their patients? Because they don’t get paid to do so. The only place a patient can get a shot of either drug is through an academic medical center, and not at a private oncology practice.

I’ve blogged previously about oncologists and profits from their drugs. To remind you, oncology is the only specialty I know of that directly profits from the sale of drugs.

Ding! Ding! Ding!! Can you spell c-o-n-f-l-i-c-t-o-f-i-n-t-e-r-e-s-t?

My jaws are clenched because…. My own misdiagnosis revealed the truth. At the end of my debacle, I accused my oncologist of insisting I begin chemo (for a cancer I didn’t really have) because it was the only way he could profit from me. He never even responded.

And from the article, I quote:

“One reason is that cancer doctors, or oncologists, have financial incentives to use drugs other than Bexxar and Zevalin, which they are not paid to administer. In addition, using either drug usually requires oncologists to coordinate treatment with academic hospitals, whom the doctors may view as competitors.”

Then, quoting Dr. Oliver W. Press, a professor at the University of Washington and chairman of the scientific advisory board of the Lymphoma Research Foundation, “Oncologists use everything in their cupboard before they refer,” Dr. Press said. “At least half the patients who get referred to me have had at least 10 courses of treatment.”

So let me review to this to be clear:

If you are a non-Hodgkins lymphoma patient (or a caregiver or advocate for one) then get in touch with the oncology department of your closest academic medical center. That will be a university or medical center or hospital that is aligned with a medical university. Here is a list. Request to be seen by an oncologist on its staff, and take copies of all records regarding your diagnosis and treatment. As you discuss options they can provide to you, ask them specifically about Bexxar and Zevalin and whether or not either drug can help you.

Then let me know if you make progress, please!! I’d love nothing more than to know this blog helped you…. because even though my diagnosis of non-Hodgkin’s lymphoma turned out to be wrong, I still feel such a comraderie with other lymphoma patients…. and while news like this angers me, it also provides me with hope that YOU will find relief.

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