MRSA: Victimization and Shooting the Messenger

Yesterday’s post, where I told the stories of three (+2) victims of MRSA infections, raised ire, blame and excuses from commentators and emailers alike.

Never mind that they were stories of five people who are infected with MRSA, one of whom has basically been left to die. Never mind that the frustration levels of these patients while trying to get treatment are over the top. Never mind that these people are victims of dirty medicine — the kind where guidelines and controls exist, but are ignored in too many places. The negative comments were aimed at me — it’s easier, after all, to shoot the messenger.

This post has been moved.  Find it by linking to its new location. 

MRSA: Patients Ignored, Left to Die

(Find an update to this post: MRSA, Victimization and Shooting the Messenger)

In the past two days, I have heard three stories, all related to MRSA and other hospital acquired staph infections, and all relating to heinous — even (in my not-so-humble-opinion) criminal acts on the parts of healthcare providers or politicos.

One story came from a colleague who visited a woman in the hospital. The woman contracted an infection after surgery almost a year ago. She is still in the hospital, on life support, not because of the surgery, but because the infection has just consumed her.

This post has been moved. Link here to find it in its new location.

Yanking the Cure Rug Out From Under Lymphoma Patients

In the continuing saga of two “miracle” drugs for those who suffer from non-Hodgkins lymphomas… the fifth most common cancer….

I told you six months ago about Bexxar and Zevalin, the two drugs which can treat non-Hodgkins lymphoma but were not being promoted by oncologists in private practice because they cannot, by law, administer it. That means they cannot profit by it. Remembering that American Healthcare is not about health or care, it’s about sickness and money…. we learned then that these drugs must be administered in (usually academic) medical centers because they have a radioactive component to them. So many oncologists provide infusion services themselves, but are not allowed to administer these two drugs, so they don’t tell their patients about them. I remain angry about that subject.

As if that weren’t difficult enough, there is now a new twist to this story, making it even more difficult for lymphoma patients to get this treatment they need — and deserve to have. According to the New York Times, Medicare has decided to reimburse administration of this drug in 2008 at about half the cost of the drug. Medicare made that determination, it says, based on what hospitals have been billing Medicare for the drug — but hospitals dispute that, saying they would never request reimbursement that would cost them almost $10,000 per patient! Patients need only one treatment, but it’s very expensive because the drug itself is very expensive.

Both hospitals and the manufacturers are confused as to how Medicare put together its reimbursement schedule. They believe errors have been made, and that Medicare’s numbers are wrong.

So here’s how this begins to domino….

Find the rest of this post at the new location of the Every Patient’s Advocate blog….

http://trishatorrey.com/2007/12/13/yanking-the-cure-rug-out-from-under-lymphoma-patients/

When Blaming Gets in the Way of Well-being

Last evening I heard from Jack, a man with revenge on his mind. Sadly, Jack’s focus on making sure someone “pays” has moved the real problem, and the person who needs his help the most, to the back seat. It’s a bad situation, and it just breaks my heart.

Jack has a six-year-old son, Max. Two weeks prior to Max’s birth, his mother was diagnosed with a strep infection. When Max was born, he seemed normal and neither the doctors, nor the family were aware of any problems. But within months it became apparent that problems were many. Eventually, bloodwork was done, later a biopsy, and Max was diagnosed with muscular dystrophy.

Jack thinks the hospital, or the obstetrician, or both are at fault for Max’s disabilities. He is doing whatever he can do — afford to do — to prove that point. And that’s why he contacted me — to help him prove that point.

He wants them to pay.

I chatted with Jack for a little while. I asked about the diagnosis, and Jack was unclear about it. He tried to get the Mayo Clinic to study Max, for free, but the Mayo Clinic wasn’t interested. They wanted thousands of dollars to do a workup, and Jack doesn’t have that kind of money. It’s clear there is a dystrophy of some sort, but Jack thinks the diagnosis may be wrong. He couldn’t say why except that one doctor, thousands of miles from where Jack lives, said the biopsy slides are fuzzy.

I asked about the differences in dystrophies. Would they necessarily be treated differently? Could it just be a question of genetics? Jack didn’t know.

I asked Jack about the birth. He mentioned the strep B infection his wife had, but kept insisting that his son was normal at birth.  I looked up Strep B after we got off the phone.  Birth defects are rare, but possible.

I asked about Max’s well-being — is he in school? Is he progressing? But I realized after about the third question that the conversation about Max’s life was being deflected in each case — always to who wouldn’t help and who wasn’t providing the “right” information to Jack.

My eureka moment came when I tried to suggest to Jack that he needed to be contacting the Muscular Dystrophy Association and others who might provide help — and realized that wasn’t the purpose of the call. In fact, Jack’s interest is less about his son, and more about the blame.

I won’t pass judgment on Jack. I can’t imagine having a child with a very difficult disability, and thinking that it might have been the result of a medical mistake at birth.

What bothered me the most was that Jack was so intently focused on the money he might get if he could prove blame — at the expense of his son’s current well-being. If he could only focus some of that intense energy on helping his son grow, and perhaps even thrive, despite his disabilities….

As Every Patient’s Advocate, I get frustrated because sometimes I just can’t help. I don’t have the knowledge or the means or the resources for special cases like this. Not that I can’t provide resources — I can — but not when there is an ulterior motive.

And — I can plead for priorities — as I did with Jack. I asked him not to let go of his fight because someday it may prove to be the right thing to do. But I tried to redirect the fight into something positive for Max. I asked Jack to reprioritize where the bulk of his energy needs to be.

Jack seemed uninterested. I wasn’t able to give him the answers he was looking for. He was pleasant and thanked me, but I could tell it fell on deaf ears.

Blame zaps us and subtracts from the positives. Refocusing that blaming energy can be incredibly cathartic. Max deserves that from his dad.

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Maybe Surgery Should be Performed in a Restaurant?

Dr. Betsy McCaughey of RID (Reduce Infection Deaths) pointed out in last week’s Wall Street Journal that when it comes to inspections for bacteria and other infection sources, the restaurants in every state in the nation are held to a higher standard than hospitals or other healthcare physicians.

She points out that inadequate hygiene in hospitals causes 100,000 deaths per year, while the CDC estimates that only 2,500 people die from food-borne illnesses like those that may come from restaurants. And those restaurants are inspected diligently in most areas, and far more than hospitals or other facilities ever are.

And here’s a real question mark. According to her article, prior to 1970, hospitals routinely tested the surfaces in operating rooms, patient rooms, labs and other locations for pathogens. In 1970 these facilities were told to stop testing because it was unnecessary. And now, 37 years later, there has been a 32 times increase in the number of deaths from hospital acquired infections such as MRSA. So why hasn’t the CDC updated its policy?

Dr. McCaughey asks the question in regards to hospitals, doctors’ offices and other facilities, “Why aren’t hospitals and doctors’ offices held to the same standard and inspected regularly? Going to a restaurant is voluntary. Going to a hospital is not.”

As patients, we should be asking these questions, too. And insisting, as we are able, that when we do visit any type of healthcare facility that hands are well washed and sanitized, and that instruments, equipment and other surfaces in the facility have been cleaned and sanitized, too.

Last year, at least 100,000 people didn’t do that insisting. And this year, they no longer have that option.

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Learn more about MRSA and other hospital acquired infections at About.com.

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MRSA: Those With Power Aren’t Paying Attention

Two reminders during the past week about MRSA and the real problems facing those who are infected by it — and those who aren’t.

The first was an email from Genevieve who told me about her husband’s experience after knee replacement surgery. Two days after being removed to a rehab center, he began running a fever, and his incision starting turning red — obviously the sign of an infection.

He was transported by ambulance to the hospital where he had the surgery, and the resident on call proceeded to examine his knee — with no gloves on! Genevieve objected — loudly she says — “wait! what if it’s MRSA?”

The doctor turned to her and in a loud voice, exclaimed that MRSA wasn’t the problem everyone thinks it is, and she shouldn’t get so upset! Genevieve, however, insisted he wash his hands and put on gloves before touching her husband again. (you, go, Genevieve!) Fortunately, while there was in infection at the site of the surgery, it was not MRSA.

The second reminder came in the form of an editorial included in Health Leader’s Media by Molly Rowe called MRSA, MRSA Me. She tells about her difficulties this past summer in getting her “spider bites” diagnosed as the MRSA they were, and the ensuing disinterest on the part of her family care doctor when she was later scheduled for knee surgery and they didn’t care about double checking that her infection had, in fact, been healed. You can just imagine what might have happened had the MRSA spread to her surgical site.

Clearly, despite the media attention, despite the 100,000 deaths each year, despite the cost to hospitals of taking care of those who get sick from it — the very people who can make a difference don’t seem to be paying attention! It’s as if they take the concept of transparency (recognizing the problem so they can do something about it) to mean invisibility (if we ignore it, it will go away.)

It’s time those leaders in hospitals, and their staff, became “infected” with whatever impetus is needed to take note and take these infections seriously. Sadly, it will likely require some horrible tragedy — like the loss of a hospital’s CEO or the CEO’s loved one to MRSA — before the people in a position to make a difference will do so.

For now, we patients need to do just what Genevieve did. She proclaimed her dissatisfaction loudly to take care of the present danger. THEN, she got in touch with the hospital’s administration afterwards to complain. She is truly an empowered advocate.

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Thank a Veteran for Your Medical Care

Yesterday for my radio show I had the pleasure and honor of interviewing a doctor who spent 25 years in the Navy, retired in 2005, and now serves a civilian population at University Hospital in Syracuse, NY with the skills he learned and developed while in the Navy.

A fitting program for Veteran’s Day 2007, don’t you think?

Dr. Ross Moquin retired as a commander, and served during both Iraq Wars, as a spinal and neuro surgeon. The stories he told were a mix of service to soldiers, and humanitarian efforts, too. We contrasted wartime medical care from World War II with how soldiers are cared for today — and what struck me more powerfully than any other message was how tuned in the military physicians are to the needs of the soldiers. For example, understanding that the sooner they see their loved ones, the more quickly they will recover, or at least get stronger.

Of interest to you, my reader, may be the fact that there are procedures and treatments being developed in military hospitals that are then translated to a civilian population. Dr. Moquin gave three examples. One is telemedicine — the idea that a doctor in one location, can walk a doctor through a procedure in another location by using video. Telemedicine isn’t new, but it’s being continually refined, partially in collaboration with the military.

A second area of work is for those who suffer from traumatic brain injuries — like American soldiers who are injured by IEDs (roadside bombs, improvised explosive devices). If a soldier is injured in the head, his/her skull is removed, all the repair work is done, and then once the brain is healed and the swelling goes down – up to a year later – a new skull is fabricated from some special material and only then is it replaced on the soldier’s head. Sounds fabulous — and like science fiction to me!

A third area of work is perhaps the biggest, because it’s more about a culture change and communications. Whereas western medicine in general has always separated spinal surgery and neuro surgery (two distinctly different disciplines even though those two body systems are so closely related.) Now Dr. Moquin tells us that he and others on his team, while in Germany and at Walter Reed Hospital, were working together. There is an organization state-side that is promoting this collaboration called One Spine. All of this can only be of major benefit to us patients.

I hope you will take a moment today — Veteran’s Day — or any other day you may find this blog post — to thank a veteran. Their work to protect our freedom is incredibly important, and today we’ve learned more about how that work reaps benefits in other ways, too.

Here’s the thanking I’m doing today: Among those veterans, I thank my husband Butch. Before I met him, he spent 20+ years in the Air Force, living all over the world, protecting those of us going about our business on American soil…. an unsung hero to most, but certainly one of the biggest heroes to me. AND my dad, Richard, who very proudly served in the Army Air Corp, in Japan, as World War II was coming to a close, my favorite among the members of the “greatest generation.”

By the way — you can listen to the interview with Dr. Moquin — it lasts about 24 minutes — I think you’ll enjoy it. 

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Stealing Hope – Managing Expectations

While visiting Sarasota, FL a couple weeks ago, I missed this article in the New York Times, When Doctors Steal Hope.

Maybe it’s just as well. I would have been one of the first to add my comments, but maybe my own blog is a better forum for that? My advocacy colleague Julia Schopick made her comment — well thought out, as usual.

The article is a blog/commentary about what happens when doctors tell a family that a loved one will die, only to have that loved one recover and go on to heal. In other words, the doctors have stolen hope — for no good reason, it might seem.

I had the same experience – I was told I would be dead within months and that I needed chemotherapy which, even if I had it, would only buy me an extra year of life.

So did my doctors steal hope? Actually — only to an extent. In fact, because I am of the personality I am, I saw my diagnosis instead as waving a red flag in front of me which just p*ssed me off enough so I could prove them wrong!

That said — what the real bottom line is to this issue is the management of expectations. It’s fairly simple concept, yet, it is violated day in and day out by all parties all the time. It’s true in medicine, but it’s also true in any aspect of life where communications is important — in the workplace, at home, with your spouse or sigO, your children, your friends, anyone at all.

A simple metaphor: Little Johnnie wants a new bicycle. His mother tells him that if he gets all As on his report card, she will buy him a new bicycle for his birthday next July. Little Johnnie works very hard in school and gets one A after the next A after the next — BUT — on one of his report cards, he gets a B in math. He’s very upset with himself.

But Johnnie’s mother buys him a bicycle for his birthday anyway — because the point was for Johnnie to work hard, and that’s what he did.

In this case, his mother managed Johnnie’s expectations — he knew exactly what to expect, and he knew what his role was in making it happen. Ultimately, even though the outcome was a bit different from what was expected, it was win-win for them both.

Suppose Johnnie’s mother had just told Johnnie he had to “work harder” or “get better grades” — meaning — she wasn’t specific enough? Johnnie might have thought Bs were OK — and that would not have gotten him the bike. And everyone would have been disappointed.

The point to this story is just that when we are sick, or a loved one is, there are ways our expectations can be managed to make sure we fall within a set of expectations. Clearly, patients don’t always have control over their health. And clearly, the health care professionals can only do so much. BUT — there are boundaries that can be expressed — for example:

“We’ll keep an eye on your husband, Mrs. Smith. If his blood pressure drops again, we might lose him…. but if it stays stable, there is a better chance he will recover. That’s not a promise because we never know what else can go wrong — but we know his blood pressure needs to stabilize to give him his best chances.”

Then — because Mrs Smith is a wise patient — she will repeat back to the doctor exactly what she heard. (and if the doctor is wise, he will ask Mrs. Smith to repeat it back to him to be sure she is clear on it.)

And if the doctor doesn’t give Mrs. Smith those parameters? Then she should ask! “Doctor, what’s the worst case scenario? And what’s the best case? And based on your experience, what is the expectation?”

It’s communication — plain and simple!! Subtracting –OR providing hope is about words — not about medicine. And asking for clarification, and management of expectations, is how an empowered patient works collaboratively with her doctors.

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From the desk of…. (11/2/07)

Some miscellany from the week not requiring entire blog posts on their own…

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Enjoyed participating in the WSYR Radiothon with Joe Galuski to raise money for the University Hospital / Children’s Hospital in Syracuse, NY. Incredible resource for families with sick children.

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Two good interviews of note on this week’s radio show: Dr. Thomas Welch, chair of pediatrics of University Hospital, and Dr. Matthew Scuderi who will talk about cartilage repair for the knee. You can download the interviews from the radio show website.

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You might be interested in some recent comments made by Marc J, an anesthesiologist, who is NOT happy with some of my posts. In fact, he would like to serve me some “salsa for the chip on my shoulder.” Hmmm…. He also suggested in one of the comments that he didn’t like attacking me on my blog where all my readers could see them — however — as you know, my email address is listed directly under my photo.

I want you, my reader, to understand all sides of the story when it comes to your care. In fact, I think it makes for smarter healthcare consumers — and shows you even better why you need to take responsibility for your own choices in your care, ranging from who your doctors will be, to how you will be diagnosed or treated, to how you will pay for your care, and everything in between.

So here are a list of Marc’s posts, although, please keep in mind that he doesn’t really intend to attack me publicly (uh-huh.)

Comment on Lemon Law for Medical Consumers by Marc J

Comment on How Apologies Lead to Fixing by Marc J

Comment on When Dirty Doctors Can’t be Identified by Marc J

In fact, Marc, you are right. There are definitely times I cop an attitude or have an “edge” to my work. I’ve been accused of that before. It started with my own misdiagnosis, and it continues because I get dozens of emails each week from people who have been wronged by the healthcare system in some way. It’s heartbreaking — and has turned me into a cynic, whereas throughout my life to this point, I’ve mostly been a pollyanna.

Guess that makes me the Ralph Nader of the healthcare system.

And yes, I have real problems sleeping at night. Because I just can’t get the word out fast enough.

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OK — out to do some gardening today! It’s a perfectly glorious autumn day here and I plan to take advantage of it. Included will be cleaning up the pieces of pumpkins left from the squirrels who have eaten right through them!

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More Evidence for the Positives of Apologies

Those of us who work in patient empowerment couldn’t help but notice the results of a Harvard Medical School study released this week about what happens to a relationship between doctor and patient when the physician makes an error. The story was reported in US News and World Report the New York Times and other outlets.

Originally published in the New England Journal of Medicine (NEJM), the commentary called Guilty, Afraid and Alone: Struggling with Medical Error basically says that when a doctor commits an error against a patient, trust is eroded and doctors feel guilty. (Did anyone question this?)

Turns out that in many cases, the patient’s family members feel guilty, too, for not protecting their loved one. Even nurses who lost family members to medical errors reported feeling isolated, and fearing their loved one was going to receive substandard care due to the guilt of those who had imposed the errors. The words “fear” and “rude” and “mistreatment” polka dot the report.

What’s the bottom line? Once again we hear the benefits of apologies by those who have violated trust. Nothing new here at all. Groups like Sorry Works have been talking about this for years. Thirty-four states have enacted legislation to grease the skids. Those doctors who understand the dynamics, even for their wallets, are beginning to get the picture.

Test it here yourself. Another story published within days in Miami, about a 3-year old who died at the hands of medical test administrators — even though the family questioned the procedure. So very sad. And a good illustration of how we feel on the other end of the tragedy when responsibility is taken by the guilty party. Apologies are plentiful, restitution is being made. By the end of the story, you’ll feel bad for the offenders, too — although not nearly so sympathetic as you do for the family, of course.

Doctors and providers — please pay attention. Your patients truly need you to understand the guilt aspects of errors, and then step up to the plate. Your careers, and our health, depend on it.

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