Archive for the 'Patient Advocacy' Category

Smoking and Botox — Wishful Thinking and Common Sense

The FDA came out with a report on the negatives of botox injections…

It’s like deja vu, isn’t it?  Where is common sense?

Read this post at About.com, Patient Empowerment.

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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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.

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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EveryPatientsAdvocate.com
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Health Insurance = Better Health (No kidding)

A report issued this week by JAMA, the Journal of the American Medical Association, reviews a study done by Harvard about the health of Americans and their access to health insurance.

More than 7,000 people ages 55 to 72 were studied. More than 2,200 of them had no health insurance to begin with, but were able to take advantage of Medicare once they turned 65.

Among those who had been uninsured and had cardiac or diabetes problems pre-Medicare coverage, 10 percent had fewer cardiac problems than would have been expected by age 72.

Bottom line, according to the researchers, is that health improves when we have access to health insurance.

Let’s put this one in the no-brainer category! Or — actually — let’s look at it another way:

Healthcare is way too expensive for too many (47 million Americans) to afford. Once you take away that money barrier, they will seek care — and they will be healthier.

My bottom line: This study wasn’t about insurance coverage’s affect on health. It was about removing a barrier.

Which then, of course, begs the question: If removing the barrier to seniors makes them healthier, what could it possibly do for those of us who are healthy to begin with? Maybe keep us healthier throughout our lives? And maybe cost the system less to keep us healthy?

And — doesn’t this make those who vote against SCHIP even bigger scrooges? What do you think about that, George Bush?

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Want more tools and commentary for sharp patients?
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Or link here to empower yourself at
EveryPatientsAdvocate.com
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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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Join Trisha in the Patient Empowerment Forum at About.com
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Or link here to empower yourself at
EveryPatientsAdvocate.com
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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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Sign up for Every Patient’s Advocate email tips
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Join Trisha in the Patient Empowerment Forum at About.com
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Or link here to empower yourself at
EveryPatientsAdvocate.com
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Patient Empowerment on About.com

This is the announcement I’ve been waiting to make to you, and it’s finally time to spring it….

I’m pleased to tell you that as of Friday, About.com has launched a new site for Patient Empowerment — and yours truly is the expert behind the scenes.

aboutlogo.gif

About.com is owned by the New York Times — and has some impressive credentials:

  • About.com is one of the 15 most visited Web sites in the US
  • About.com is a top-ten content site
  • Every month, 34 million unique visitors in the U.S. (average; Nielsen//NetRatings) and 51 million worldwide (average: About metrics)
  • About.com’s content is created by a network of more than 600 Guides. These people are passionate about their topic areas, and have deep expertise and credentials in their fields. Guides make sure our visitors find answers and advice that are personally relevant, credible, and useful – all delivered in a human, accessible voice.
  • About.com is a “companion to your news” site, providing depth and breadth behind current topics

A big benefit to those with interest is the fact that we will have an ongoing forum on any topic of interest related to healthcare delivery — the good and the ugly.

Yes, this personal blog will continue. This blog and the one at About.com will cover different topics on any given day, so you’ll want to check them both. Comment on them, too!

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Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate email tips
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Join Trisha in the Patient Empowerment Forum at About.com
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Or link here to empower yourself at
EveryPatientsAdvocate.com
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