Why Does the US Have the Worst Rate of Preventable Deaths Among Industrialized Nations?

From 2002 to 2003, about 101,000 Americans died from preventable causes ranging from diabetes to bacterial infections and surgical complications, so says a study releases this week.

The reports are based on results from a study undertaken by the Commonwealth Fund, a private New York City based health policy foundation.  The study took place among 19 industrialized nations.  The results were published in the journal, Health Affairs.

The US ended up at the bottom of the preventable death barrel.  France, Japan and Australia were ranked at the top.

Researchers looked at deaths before age 75 from a variety of “amenable” causes which included heart disease, stroke, some cancers, diabetes, bacterial infections, surgical complications and others.  They arrived at a death rate and numbers of patients who died before they might have if they had received “timely and effective healthcare.”

Among the countries reviewed, 64.8 of 100,000 French people died from preventable causes.  And 109.7 of 100,00 Americans died from preventable causes during 2002 – 2003.

The same study was undertaken in 1997-1998, and the US came in 15th then — so it descended to the health system basement since then.  Between the first study and the second study, all of the countries improved their preventable death rates by an average of 16 percent.  Except the US — which improved by only 4 percent.  (That may not be as bad as it sounds since the US’s rate was at a higher level to begin with.)

Why is the US in such bad shape?  Those at the Commonwealth Fund blame access — the fact that 47 million Americans cannot afford insurance or healthcare.  I have no doubt access is a big part of it.  If you can’t afford healthcare, then you don’t seek it out.  Who wants to spend a lot of money on a doctor appointment, only to be told you are sick, when you don’t have the money to treat the sickness anyway.

But I add my own two cents worth of reasons:

First, I believe that part of the answer lies in the way access is handled among those who DO seek help.  We have symptoms, we go to the doctor, and the doctor spends so little time with us that too often, the problem assessment isn’t handled correctly to begin with.  It’s a problem of misdiagnosis and missed diagnosis.  I’d be curious about the correct diagnosis rates among those other industrialized countries.  It only makes sense that people will die if their preventable disease isn’t diagnosed correctly to be begin with — even if it is eventually discovered, it may be too late to treat effectively.  (Yes, I’ll admit, I’m not particularly objective about this part, based on my own experience.)

Second, I believe our American lifestyles lead to preventable death.  We overeat, smoke, drink too much alcohol, drive too fast, live like couch potatoes — and then if we do go to the doctor, we expect the doctor to give us a pill that will fix our bad behaviors.  Please!  One pill won’t fix a lifetime of unhealthy habits.  My curiosity expands to the lifestyles in the other countries that ranked higher than the US.

The Answers for Wise Patients:

A two-pronged attack.  First, begin examining some of your own lifestyle habits to see if you can step up to the health plate yourself.  Don’t blame your doctor or lack of access for your bad choices.

Second, knowing that your doctor will never (in our lifetime) have more time to spend with you, pick up the banner yourself, and begin empowering yourself.  Take responsibility for your own healthcare.  Seek out the doctor when you are prepared to do so.

The truth is — excellent care exists in the US for those who seek it out.  I know the payment system is a barrier.  There is no question about that.  But that’s not going to change anytime soon.  So we patients need to do what we can to improve our own chances.

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When Your Doctor Fakes You Out

Empowered patients will be interested in a report today on the study results of a survey of Chicago area internists (family doctors). It seems that 45% of them see nothing wrong in prescribing placebos — fake sugar pills — for their patients.

The report actually tiptoes around what the results really mean. The spinmeisters had their say with phrases like, ” this study suggests that placebos themselves are viewed as therapeutic tools in medical practice” and “a growing number of physicians believe in mind-body connection.”

Yes — I do understand that sometimes the mind triumphs over matter — and I do understand the mind-body connection theories. I’m a believer.

I don’t bring this up because I think patients shouldn’t be given what works — and if a sugar pill will help the pain or symptoms go away — then OK. But that is NOT why doctors are giving their patients sugar pills.

Instead I see these results as proof that doctors don’t care to take the time to figure out what is really wrong with a patient and that, too often, a placebo is simply the answer to “there, there, little lady — it’s all in your head.” If you could read my email, you’d believe the same thing.

The fact that 45% of doctors would be willing to sacrifice their patients’ potential health by ignoring real symptoms or not treating them accurately is just one more reason why trust continues to erode between patients and their doctors.

And if they think the sugar pills can really help a patient? Then they should tell them that’s what it is. According to this report, that is most often obscured.

Check your medicine cabinet. If you find something labled Obecalp (which is placebo backwards) or Cepocab — which is a pill made of lactose, a natural sugar, and can be prescribed and filled at pharmacies everywhere — then your doctor has prescribed a placebo for you.

Ethical? Unethical? What do you call it when someone pulls the wool over your eyes?

If you’d like to read more, you can do so here.

Wise patients know that asking plenty of questions is the best approach to making sure they aren’t victims of a placebo prescription. When your doctor writes a prescription, there are definite steps that can be taken to verify that the prescription is bonafide, that it’s the right drug for the right problem, and what to expect when you take it.

Wise patients work to make sure they aren’t being fooled.

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Dad — an Empowered Patient Sets a Fine Example

…. and today is his 81st birthday.

When people ask me how and why I began doing patient advocacy and empowerment work, I first tell them about my misdiagnosis, and then I tell them it’s because I learned how to be an empowered patient from my dad.

Since beginning his battle with cancer in 1986 — yes — more than 21 years ago — Dad has battled his illness every step of the way. From learning everything he could, first through the libraries, then through the Internet, to partnering with his doctors but retaining decision-making for himself, to second guessing problems with a drug he was taking, then figuring out he’d been given the wrong instructions, to doing all the same for my mom to help support her through her Alzheimer’s disease… yes… dad is the epitome of the empowered patient.

Learn more about the steps he has taken here….

Then join me in wishing him a Happy Birthday!

I’m proud of you, Dad…. with love…. from your eldest

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Doctors Work the System to Increase Income – at the Patient’s Expense

Found an interesting op-ed from the Dallas News online yesterday, written by Dr. Steve Cole entitled, “Biggest factor in rising health costs are the doctors themselves.” Unfortunately, the title doesn’t even begin to touch the content, so many folks will miss this enlightening piece — a piece that should be read by everyone who has an interest in the costs of healthcare.

The article explains many of the reasons healthcare costs go up based on a doctor’s wants and needs and not necessarily on the best interests of the patient. There are a few statements that should make all of us pause — because they speak to the real problems of increased costs. I give Dr. Cole plenty of credit for citing these points — and no doubt he’s taking plenty of flak from his physician-colleagues for raising them.

Find the rest of this post at the new blog location.

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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Doctors Protect Colleagues at Patient Expense

One of the questions I am asked frequently is about the best way to find the right doctor for a second opinion. That question — and its answer — have become among the most important answers I’ve ever provided, ever since the proof of my answer was provided in the results of a study last week by the Institute of Medicine as a Profession (IMAP.)

How many times have you heard that advice — get a second opinion! It’s important to do so if you will ever need any type of difficult or invasive treatment for your medical problem. Long term drugs, drugs with difficult side effects, any type of surgical procedure or any procedure which will have a long term effect on you — yes — you need a second opinion.

Why? Two reasons. First, to make sure your diagnosis is correct. Second, to make sure you know about all the treatment options, have someone to discuss them with, and can then choose the one you have the most confidence in according to your own goals for the treatment.

The advice I give? Never ever ever see a second opinion doctor who has any relationship to the first opinion doctor. Don’t see a second doctor from the same practice, from the same building, from the same hospital, from the same country club, from the same neighborhood, from the same bowling league — you get the idea. The idea is that they can’t be friends or close colleagues.

Why? Because two friends won’t contradict each other. Your number two will rarely give you different answers from your number one doctor if they know each other and respect each other. Knowing that, then you also understand that your number two won’t be as objective as necessary and if you need anything at all when you are being diagnosed and decisions are being made for treatment, then you know you need objectivity!

The study done by IMAP proves this point. Without going into all the details, the bottom line is that too many doctors talk out of both sides of their mouths. While, on the one hand, 98 percent of them say that medical errors should most definitely be reported, 46 percent said they had witnessed an error and had not reported it.

Why didn’t they report those errors?  Because they were committed by a friend, or close colleague, or a business partner or even just the guy down the hall.

Hmmm… a major ethical disconnect if you ask me.

You’ve seen me type it before: trust, but verify. A second opinion is absolutely necessary. We want to believe that our doctors are not the ones who do these unethical, and possibly dangerous things. But it turns out that about half talk out of both sides of their mouths. That means if you have seen two doctors, then one of them fit that unethical profile. If you’ve seen 10 doctors, then five of them do.

A second opinion from someone with no relationship to your first opinion doctor may be lifesaving in its objectivity.

Read more, and get more details on my About.com blog.

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From the desk of (12/1/07)…

Miscellany from the week, not requiring full posts on their own….

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My big news is ready to be sprung! Although, through today’s blog, I’ll announce it “softly” — a bigger announcement is in the works for this week.

You may be familiar with About.com — tens or hundreds of millions of visitors each month go there to learn about 600+ topics of interest ranging from Women’s Issues to Fishing to Poker to Fashion to Football — and now — patient empowerment!

Yes — as of yesterday afternoon, the new About.com Guide to Patient Empowerment was launched — and yours truly is the expert/guide. Take a stroll on over! Let me know what you think! Join the forum so we can chat! And if you ever want to touch base, just link on my name at the top — my email address is right there.

The web address is: http://patients.about.com Why not bookmark it or add it to your favorites?

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An interesting report on the Thursday evening NBC news about differences in the way African American women are diagnosed, treated, provided with preventive medicine, etc…. It actually strikes me as the next revelation in the fact that medical research just can’t be generalized. First we learn that women require different diagnosing and treatment from men for problems like heart disease. Then we’re told that children can’t take smaller doses of adult drugs because “children are not simply small adults.” And now we learn that genetic makeup related to skin color affects the success of diagnosis and treatment as well.

What others are we missing?

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Has anyone else noticed this? Everytime I turn around — for the past several weeks — there have been more ads for health insurance on the TV, in the newspaper. From those plans that “pay you back” to supplemental plans for Medicare…. they must be spending millions if not billions.

Wouldn’t our premiums be lower if they didn’t spend so much on advertising?

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Today is World AIDS Day and it seems there’s not much mention of it in the press. My cousin Tim has AIDS. Tim is in his 50s. As a younger man he was a vibrant and talented actor, appearing in everything from plays to a soap opera in England back in the 1970s. Now, in these later years, Tim is a slave to the medications that keep him alive and by his own estimation, he doesn’t feel like his life has much quality.

My thoughts and prayers are with Tim and others who suffer through such a horrible disease.

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Psych Drugs, Shady Practices and One Fixer

In 2003, after taking Zoloft for six weeks to help him sleep, Woody Witczak, a vivacious, intelligent, energetic and happy man, hung himself — and died.

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Last evening I leafed through my December issue of Consumer Reports. There on page 65 was my friend and colleague Kim Witczak, Woody’s widow, and one of the most active fixers I know.

The article featured Kim’s work to clean up the rules by which drugs get approved by the FDA. Since Woody took his own life, and because it seemed so completely outside anything Woody ever would have done, Kim knew there must be some kind of dark force, some kind of shady coverup that contributed to the tragedy.

She learned several things. She learned that Zoloft is an antidepressant, not a sleep aid, and it had been prescribed to Woody “off-label.” Woody had just begun working at his dream job. His sleeping problems were related to his excitement and overwork — not depression problems. Kim questioned how Zoloft could have been prescribed for him.

Digging further, she learned a few things about Zoloft and even more about the FDA and its approval process for new drugs. Included were the following: pharmaceutical manufacturers could apply for approval to make drugs available to patients by showcasing only those clinical trials that show the drugs “work.” They were able to cover up any others that didn’t work out so favorably. Also, once a drug was approved, the FDA could request follow up studies, but had no way of enforcing those requests.

It also turns out that among the people who have the power to approve or disapprove any given drug, are people who may benefit financially from the sale of the drug. Think about that for a moment…. A panel of professionals is supposed to objectively determine whether a pharma company can make millions or billions of dollars on a drug — and some of those people will be the ones who make money when it’s sold.

Objective? I think not.

And here’s a big one, too — more than half the FDA’s budget for considering whether or not drugs should be approved comes from the fees paid to them by the pharma companies. So, when paired with the revelation above about who sits on the review panels?

Scary, isn’t it?

In September, the laws changed for how drugs will get approved, and what follow up will be required. The law goes into effect within 18 months. Kim was a large force in getting the changes made, as was Consumer’s Union, the publisher of Consumer Reports.

The changes affected were: All clinical trials used to prove a drug is — or isn’t — safe will be made public. There will be some new regulations on the drug ads we see. All print ads will have a toll free number and a web address to help consumers report problems. The numbers of reviewers on the approval panel with ties to drug companies will be reduced (but not eliminated). But no change has been made to how the FDA’s budget is put together — meaning — approvals will continue to be influenced by contributions made by the pharma companies seeking those approvals.

There’s not much of a message here for us as individual patients and consumers — except — to be thankful we have people like Kim Witczak who take their pain and suffering from the loss of a loved one and turn it away from blaming and into fixing. You can learn more at Kim’s website, WoodyMatters.org .

Healthcare will be safer because of Kim’s work, and that of Consumer’s Union, too. Fixers at their finest.

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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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Victim or Survivor?

My friend and colleague Ilene Corina is the director of PULSE of NY (Persons United Limiting Substandards and Errors) and issues a newsletter each month. I’ve asked her permission to share the following from her most current edition.

You’ll see it’s another way of explaining blamers and fixers. Well put, and very clear:

I hear the term “victim” often enough and it is a word that makes me just cringe. When I hear that term I picture the victim lying bleeding in the street or behind a concrete wall enslaved in a medieval prison innocent of their convicted crime. I don’t think of myself as a victim of medical error, but my son surely is, since he is dead and can no longer help others learn from the mistakes made by the system that has failed so many of us.

I am a survivor. Survivors get up in the morning and work, play and attend to their business. Many survivors find ways to help others who feel victim to the experience that has pulled them down. Whether it is a disease, natural disaster or a crime, the survivor picks himself up, brush himself off and says “what can I do to make this world a better place” sometimes just one person at a time. A survivor still cries, because that is nature’s way of cleansing and relieving the tension. A survivor still gets angry, because that is the way to learn when things aren’t going right. A survivor still gets tired, because the body needs time to rest but gets going each time to start again.

Victims often get stuck. They can lose direction and the anger stays with them. They may sleep more or use their anger to try to improve the world. Often, it is the survivor who hears the victim and focuses the victim’s needs in a positive and constructive way to help improve the world.

Whether a victim or a survivor, you are important and by sharing, you will relieve yourself of a burden that does not have to rest on your shoulders alone.

Thanks Ilene.  Good food for thought.  I appreciate you, my friend — the consummate survivor.

(see Ilene’s blog at:  http://patientsafetyadvocate.blogspot.com/)

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