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Trisha Torrey

Patient Empowerment Blog


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Channeling Bob Dylan - How Does It Feel?

Tuesday April 22, 2014

OK, you children of the 1960s... it's time to channel some Bob Dylan...

How does it feel? How does it feel?
To be on your own.... with no direction home, like a complete unknown
Like a rolling stone (love that harmonica!)

So where is this coming from?

I've been working on a presentation about patients, their medical challenges, and how they feel about them. And you know... I'm just kinda stuck.

So I thought - who better to ask than you, my intrepid readers!

When we have scary symptoms, or we're diagnosed with something difficult or lifelong, or we are told we need some sort of difficult treatment (surgery, chemo, radiation) - we all have feelings about that new knowledge.

Some possibilities:

  • fear
  • anger
  • doubt
  • relief
  • sadness
  • melancholy
  • .... what else?

So - you might ask - what else is new? Well - we know a few things...

We know that any feeling that comes about is natural and appropriate. Just like Kubler-Ross's stages of grief, some can even be anticipated.

We know that it's not wrong to have any feeling at all - it's just a feeling. I could be wrong to act inappropriately based on a feeling, especially if it hurts someone we love (or even ourselves) but even then, there is wide room for interpretation.

What is less known is the effect of our feelings on our abilities to cope with our illness or condition. Further, we know that our feelings can affect our abilities to heal - but to what extent, we aren't sure. Very difficult to measure.

Please! Help me put together the rest of this presentation... Please share YOUR feelings! Tell us what they are, how you deal with them, what effect, if any, you think they have had on your medical status...

I'm so very curious to see how you answer Bob.... how DOES it feel?

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Share your experience or join the conversation!


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Photo (c) Photos.com

Don't Let Them Fool You - Non Profit Religion and Government-Run Hospitals - Aren't

Tuesday April 15, 2014

There are two kinds of hospitals that we patients think we know something about that just isn't true.

That is, that most of us think that non-profit hospitals, including state-run hospitals and religion-based hospitals don't have the same profit motives that private hospitals do. We think that somehow, because they are considered non-profit, or because they are run by a religious organization, they are exempt from our usual follow-the-money approach to our care.

Don't be fooled!

It's true. State/government run hospitals and religious charity hospitals may have different approaches to making money than private hospitals do. They may budget differently, they may have a different tax status, and they may even raise charitable giving money differently. But make no mistake, the concept of follow the money is at least as important for these organizations as it is for private hospitals - or maybe even more so.

The problem is that so many of us jump to the assumption (painful!) that because they have "non-profit" or "religion" or "charity" in their names, then we will get more caring-type-care, and we will pay less for it. After all - why else would they exist as non-profits? By deemphasizing their profit seeking, they are telling us they are providing care more for Golden Rule reasons than anything else, right?

SO wrong. Wrong. Wrong. Wrong.

Here's how a non-profit or charity hospital works. By law, and in order to avoid taxes, they must balance their budget every year. The key is to budget so that no tax bill will be due. The laws are written to allow them to move money to different places, or to increase or decrease their spending in certain areas so that at the end of the fiscal year, their balance is exactly $0.

But that doesn't mean they avoid making money. Not at all! Suppose they bring in an extra $1 million this year... what will they do with it? They'll just add it to the CEO's salary, or lease everyone in the C-suite a new luxury car, or they'll buy a new robotic surgical machine, or they'll run more ads on the local TV station.

But in no way will they give a single patient a break on pricing, or improve their service to their patients. Those aren't options or desirable. What's desirable is to bring in lots of extra money that they can spend to make the top dogs happy, or to make lots more money. It has nothing to do with providing better care at a lower cost than a private hospital. Nothing at all.

If you have a few moments and want to clarify this point - that non-profits, including religion-based hospitals - aren't about charity or lack of profit at all, you might be interested in a series of articles written by Rita Healy, who had her own run-in with a charity hospital after breaking her leg. Here are a couple of links, but there are more in the series, too:

The $63,000 Broken Leg, or How Hospitals Make Money Off Charity Care

(Non)profit Hospitals: Tax Breaks at Home, Expansion Overseas

(Non)profit Hospitals: Charity Pays

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Photo (c) Getty Images - Joos Mind - Plenty of expensive new equipment!

What We Can Learn from Ramona's Wish to Die - Fulfilled

Monday April 14, 2014

A few months ago I told you about Ramona who contacted me for information on choosing death. A woman in her 50s, she was totally debilitated, in pain, and miserable due to the domino effect of medical errors from years ago. She informed her doctor that she no longer wanted treatment, and asked him to prescribe hospice and palliative care. But he declined, telling her that she could be treated and was afraid he would be arrested. (Of course, that excuse was ridiculous. According to Ramona, he wanted to keep treating her because he could make plenty of money by doing so.)

Ramona - whose real name was Rosemary - asked me to help her die. I had to think long and hard about such a request because, of course, my focus is on helping patients find their best outcomes from the medical system. But the more I thought about it, I realized that some patients might define "best outcome" as death. And perhaps choosing the time, place and circumstances of our deaths is the epitome of being empowered.

Word came this weekend that Rosemary did choose to die and, in fact, died last Thursday while being tended to by hospice. HER choice. She worked with a private advocate to find a doctor who would go along with her wishes to withhold hydration and nutrition. I'm told she passed away peacefully, holding her advocate's hand.

Rosemary did it her way. I applaud her. I wonder if I would be so brave.

What we empowered patients must do is learn from Rosemary. She KNEW how miserable and unhappy she was. She KNEW that medical science was only keeping her alive because they could make more money from her. She KNEW there was nothing else to be done to improve her quality of life. She KNEW she wanted to die.

One day, you or a loved one might be in a similar position. You may decide to go along with your doctors to keep letting them treat you, no matter how miserable you are. You may do so for religious reasons, or maybe from fear of the unknown.

Or - you may want to explore the possibility of a more peaceful, self-directed death for yourself. If so, here is some information for you:

Rest in Peace Rosemary, with appreciate for the lessons you've provided to us, and the sharing of your journey with others.

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Photo of Rosemary Jablonski

A Different Kind of Medical Test We'll All Be Given - Doctors Rating Patients

Wednesday April 9, 2014

You thought you had left these behind in school... tests that don't involve samples of bodily fluids or other tissues. No one will remove anything from you or test it under a microscope. Ultimately the answer they give you won't be a measure of your current health, nor will it result in a diagnosis, per se....

No. Instead it will be a test of questions and attitudes about your willingness and ability to participate in your own healthcare and outcome determination. The questions and observations made about your interface with the healthcare system will result in conclusions about how empowered you are as a patient. Except that they've given it a new name: The Patient Activation Score.

And - as your long-time expert in patient empowerment - I have to say - I LOVE IT!!

If anyone had told me 9+ years ago when I began this journey of helping us all to learn to be smarter patients, that someday the healthcare system would see just what a positive effect engaged patients can have on their own healthcare, I would have had trouble believing it. Until recently, in general, the system has fought AGAINST the idea of engaged patients. Two reasons: 1. because we take more time, and of course, time can be the enemy of profit. and 2. because too many inflated doctor egos railed against their patients being at all involved in decisions about their care.

But that was very short-term thinking that really got in the way of providing good care. So - what changed? Why the systemic change of heart?

Follow the money, of course!

Incentives within the system are changing rapidly. For one thing, doctors have figured out that their empowered and activated patients actually tend to adhere better to instructions when they understand them, and when they buy-in. When their patients do better, they, as doctors, LOOK better. There's incentive there.

But that's really only a small portion of the difference. The much MUCH larger portion is about the shift in how providers are being paid - that is - that when their patients DON'T do well, they LOSE money. That's the change in how Medicare is paying hospitals (or NOT paying them) when their patients return to the hospital too soon after discharge.

This article in the Wall Street Journal describes the concept of patient activation in far more depth. It suggests that soon we will all be tested on how well we engage in our own care. It describes the incentives the system has for making sure we know how to engage. It's a Patient Activation Score (developed by Insignia Health) - coming soon to a medical practice - and an employer who provides healthcare, near you.

What do you think? Where on the spectrum do you land? You can read clearer descriptions by clicking on the image above. Then take this poll - and let us know.

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Image: The Patient Activation Measurement as developed by Insignia Health

Does Cost Transparency Help Us Choose the Right Doctor?

Tuesday April 8, 2014

Regular readers of this blog know what I'm a big believer in transparency - the concept of open access to data about almost any aspect of healthcare, de-identified (meaning - we don't know how it applies to individuals by name) - so that we patients can use it to make decisions about our care.

Transparency can take many forms. It may be about hospital infections, or doctors' malpractice. It may be about research and disclosures, or even patient safety in general.... And, of course, transparency can be about money.

It was big news last week when we learned that President Obama has signed an executive order to publicly post billing data for the 880,000 doctors who bill Medicare in the United States. HUGE! Especially because the American Medical Association, on behalf of its members, has fought that release for years.

In this day and age when the cost of our care is more important than ever, and knowing I have been such a cheerleader for transparency, I've surprised even myself that I'm not more excited about this!

It's most definitely a step in the right direction. Knowing how much doctors are making to do what - well - OK - I suppose on some levels that's helpful. But I am truly puzzled by trying to figure out how it will help us patients get the care we need. In all honesty - I just don't believe that will be an outcome at all.

Or - asked another way - as a patient who makes decisions about what doctor to see for what, in hopes of making sure you get the most quality service from the doctors you choose - does it matter to you how much they charge, and get paid, for their services?

Maybe! But if so, I think it's a stretch. For example, if you have an obnoxious noise emanating from your car's engine - do you choose the quality of your repairman based on what he's going to charge you to do the work? You might - but would that be the first thing you look for?

In most cases, I don't think so. In most cases, I think the cost is at best a tie-breaker. More likely, when the information is available, we'll choose the best doctor for us based on what we know about success rates - capabilities of helping us find the best outcomes for ourselves. Then, all else being equal, we'll use what we know about the amount we'll need to pay, to make a decision.

And so - while I appreciate that this newly released data on how much these providers have been billing will be a step in the right transparency direction, I don't think it will be so useful for us patients.

Instead, I look forward to the day when the REAL quality measure of a doctor becomes available. It exists... It's a database of all practitioners in the United States and their track records - the good, the bad and the ugly. It is (supposed to be) used today by hospitals when they are preparing to hire a doctor. It covers everything from licensure, to malpractice, to criminal records and more.

AND - it's not at all transparent. We patients don't have access to it. But we should. So my big hope is that this new release of financial data will be a solid step toward the release of quality data, too.

As I said - I'm not sure why I'm not more excited about the release of financial data. Am I missing something? Weigh in below - and let me know what you think. Let's make this a conversation!

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Photo (c) iStockphoto.com

Whose Goals Are the Right Goals - Yours or Your Doctors?

Thursday April 3, 2014

Long time readers know I've had a running argument with most of the rest of the healthcare system because I believe that patients are THE most important stakeholders in medicine. Much of the rest of the industry believes they are far more important: insurers think their stake is most important because they control the purse strings. Providers think they are the most important stakeholders because they provide all the services that make healthcare happen. Other parties like to think they are the most important, even if they realize they might only be in second place....

But rarely do any of them consider the one group that IS the most important stakeholder to hold that position - patients. In fact, sometimes we don't even make their lists.

Here's why we are most important: if it wasn't for our need for improved health, and OUR money, none of the rest of them would have a job or a position at all. WE reign as most important.

So then, that begs the question... when it comes to any given medical transaction, whose goals are most important? Are the insurer's goals of saving itself money and making obscene profits most important? Or the provider's goals of delivering as much care, and keeping patients alive as long as possible - are they most important?

Or are our patient goals - our personal goals - the most important in the big scheme of healthcare?

I raise this today after reading this piece in the NY Times called Doctor Priorities vs Patient Priorities Dr. Danielle Ofri discusses her initial horror that one of her patients pretty much ignores the fact that he has diabetes. It's just not a part of his lifestyle to worry about it or manage it. She can barely believe that he could simply just not deal with it.

But then she talks about her patient's point of view. Her patient feels as if he has no way in his life to cope with it because he's a cab driver who lives off street food. He can't get exercise because that would cut into his income. So rather than worry about it - he has learned to put it on a shelf and live his life.

At the end of the piece she states,

"By the "quality measures" scorecard, this patient will count as a failure on my watch, since I have not succeeded in normalizing his glucose -- or his cholesterol or his blood pressure, for that matter. The objective, outcome-driven data would rate me as a better-quality doctor if diabetes fell off his radar again and he dropped out of my practice.

Luckily for both of us, he continues to come to his appointments, and we both call that a success."

I give Dr. Ofri credit here. She realizes that her patients' goals must be at least as important as hers. I'm sorry the system will measure her as having failed. I give her props for realizing that this man has chosen to live life on his own terms. He has chosen his version of quality over her measurement stick of quantity.

I feel the same way. I've lived my life for more than 60 years. There are things I have spent a lifetime liking or doing that I'm just not willing to give up so that I can live longer - at least not today. My attitude is that I'd just as soon live my-definition-of-a-quality-life for however long I can do that, and not feel deprived by changing my life just so I can live that "deprived" life longer.

However, I also recognize that some of my not-so-healthy habits could end up costing me, my insurer, and yes - maybe you - more money to take care of me in my older age than if I did make those healthier choices. They may also cause me to be sicker at some point. Or maybe not.

What I do know is that I am the biggest stakeholder in my own healthcare, and given all the knowledge I need to make the best choices for myself, it's MY goals that are the right goals. That does not mean I should be telling my doctor what to do to provide care to me. It does not mean that I know better than someone else about their lives. It DOES mean that when I have the facts, I'll choose the best course for myself and that my choice is the right one, whether or not the medical system would make the same choice for me, and whether or not I meet someone else's measurement of what is right or good.

What do you think? Am I wrong? If doctors are being measured based on outcomes, and we patients aren't cooperating, is that right or fair to them? Does it matter?

(OK - we all know the answer to that question - but I'd love to hear your perspective, too.)

I'd be very curious to know if you've ever had this discussion with your doctor, too.

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Agree? Disagree?

Share your experience or join the conversation!


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Photo (c) Getty Images - Andrew Unangst

NBC's Today Show - You Ought to Be Embarrassed and Ashamed

Wednesday April 2, 2014

So there it was this morning - a report I've expected to see for some time.

Maria Shriver reported on the disturbing upward trend of mothers using alcohol as a crutch as they deal with their children during the day. Play dates offer juices and sweet drinks for kids, and wine for the moms. Then, of course, they pile the kids back in the minivan, and get behind the wheel to drive home - post wine.

Maria also reported on a survey that showed that 40% of respondents said alcohol helps them cope with parenting stress. One-third said they have a friend who has developed a "problem with alcohol" - but of course, none of THEM thought they have one.

This comes as NO surprise. I first called out this problem (A Whine about Wine) over a year ago reminding us all of the parallels between the everywhere-I-turn-around promotion of wine today, with the everywhere-we-turned-around promotion of smoking back in the 1950s and 60s. In those days it was first hand smoke and second hand smoke that affected us - but not until many years later. Now thousands of people die of lung cancer, COPD and other related problems every year. Those of us who don't suffer from those diseases directly pay through our health insurance premiums and taxes.

Sadly - we are also paying for this more recent alcohol trend, too. Drunk moms and dads are driving and killing. If they aren't driving and killing, then they are sleeping off the alcohol, then not paying attention to their kids. Ignored children become problematic adults. We will pay for all that through increased auto insurance or health insurance and the taxes required for the sheriff's department to scrape dead bodies off the roads. Marriages will fail. Children may fail to grow up as responsible adults because they don't see responsible parents. There is a price for all society.

It's sad and frightening, too.

So - back to the Today Show. An hour after the report from Maria Shriver, I look up at the TV and there are the very jovial and snarky Kathy Lee and Hoda... 10am east coast.... with their glasses of wine parked next to them! Now, granted, they aren't mothers of young children. But their audience is - that is who they focus on, who they intentionally target their show to - and sure enough - that's who they influence.

NBC News' Today Show - you SHOULD be ashamed! What a perfect opportunity for Kathy Lee and Hoda to begin a campaign AGAINST alcohol as a morning coping mechanism! Why not make a real case of it - a real determined effort to help some of these parents curb their alcohol dependence?

Oh - but wait - sorry. I suspect that wine is a product placement. You aren't allowed, by law, to blatantly advertise wine. But you are allowed to be paid by the wine industry to promote it.

Sure enough - just like everything else - follow the money.

Well NBC - follow THIS. <<click!>> I've just turned you off.

(I encourage others to do the same.)

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Photo - screenshot from the Today Show - circled in yellow are their wine glasses, their permanent props

Keeping Secrets from Your Doctor? SO Not a Good Idea

Wednesday March 26, 2014

Those of you who read this blog regularly know I don't feature too many hero doctors. It's not that there aren't a lot of them out there - there are. It's just that not many of them are expressing opinions or providing advice online.

I've got a new one to add to the list of good-guys (and women.) This one is Dr. Peter Elias who I've virtually met through the Society of Participatory Medicine. Dr. Elias is a primary care doctor in Maine who, I've observed, has a grand ability to take a listserve conversation among a handful of people who aren't exactly agreeing with each, and defuse it by making a point that no one had thought of, thereby sending the conversation in a totally different, and far more useful direction. It's his gift.

So, when Dr. Elias types, I listen. Truth is, he doesn't really write so much for patients as he does for his fellow MD colleagues. But when we look at the other side of his writing, we can learn something. So let's do it.

The advice I'm asking you to consider today is from a post Dr. Elias wrote called "If you don't ask, they won't tell." YOU refers to his doctor colleagues. THEY refers to patients. He tells the story of a local nun, Sister Bee, who came to him complaining of symptoms that he had trouble diagnosing - because he made assumptions about her that didn't turn out to be true. Because of his assumptions, he didn't ask. And she didn't tell - nor did she get correctly diagnosed (at first) or get proper treatment (at first.)

And that's the key. While Dr. Elias and other primary care physicians might take it upon themselves to ask every relevant question, they won't always hit the bullseye. They can't possibly know everything we've eaten, every allergen or germ we've been exposed to, every risky behavior in which we've participated. Sometimes we have to be the ones to raise the point.

THAT is what the partnership between patient and provider is all about.

Eventually that's exactly what Sister Bee did - she raised the point. She asked the relevant question that needed to be asked. I have no doubt Dr. Elias was as surprised as anyone! But when you read his post you'll see clearly what the next point is...

And that is - don't keep secrets because you think your doctor is judging you. While I'm sure there are rare exceptions to the rule, for the most part doctors won't judge you because - honestly - they don't have time and they aren't interested in judging you. They are well trained to do the job of diagnosing and treating you, leaving no room or time or inclination to judge. When Dr. Elias tells his story, and relates his surprise, it's very clear he made no judgments about Sister Bee.

So chime in. Share your thoughts. Don't hold back or hide things, keeping them a secret. Asking your doctor to diagnose you without all the relevant information is folly - possibly hurting you, and certainly wasting everyone's time and money.

Come forward, be direct, and be a partner with your doctor instead - just like Sister Bee was.

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Photo (c) Photos.com

Blistered Eyeballs Make Me Suggest: Why Not Record Your Doctor Visit?

Monday March 24, 2014

My eyeballs are feeling a bit blistered after reading this account of a patient who asked her doctor if it was OK for her to record her appointment using her smartphone. Her purpose for recording it was so that she could remember everything she was told, and so that she could follow up on the advice and decisions that were made.

Instead of seeing the idea of a recording as something good and useful to both the patient and the doctor, the doctor instead went ballistic, shouting at his patient, telling her that NO, under no circumstances would it be OK to record the session, and berating her once he knew she had turned it off.

The reason the online discussion became so contentious was because the patient had a second recording device in her pocket which she did not turn off, and thus captured the doctor in all his arrogance, ego and fear-driven glory. To which I say - serves him right.

In these posts, I usually try to make sure you, my readers, understand the various points of view in any potentially contentious interchange. I want you, as the smart patient, to know that the actions and choices you take are based on understanding the various outcomes that may occur.

So - in this case I'll say that while I see that the doctor's first reaction - his shouting, berating and belittling - were in response to his assumption that the patient was trying to do something nefarious by recording the session - I'm sorry - but I don't give the doctor any sort of understanding or pass for believing that. What an arrogant jerk.

Granted, there are patients who push the limits. Doctors have complained about them. I honestly can't blame them for assuming the worse in that sort of case.

But for the other 99% of us, any doctor who would jump to the conclusion that his patient was trying to corner him or prove him wrong is not a doctor any of us should have.

I actually think recording your appointment with your doctor is a great idea! I even added the idea to an article that was published last year on what to do during your doctor's appointment. Recording the visit gives you a chance to review the entire encounter, to better understand your diagnosis and/or treatment, to remember the responses to your questions and more.

And it's so simple to do with smartphones in so many pockets. Most of the newer phones come with a voice recorder already available. For those smartphones that are older, you can download a recorder for free. Even if you don't have a smartphone, there are small handheld recorders you can pick up inexpensively at big box stores.

I do recommend you be up front about it with your doctor, although I don't recommend asking if it's OK. It's easier to beg forgiveness than ask permission! Instead, I suggest you simply say, "Doctor, I'm recording our visit so I can remember what we talked about once I get home, and so that I can learn more about the questions and answers we exchange" - or something similar.

The basis for a good patient-doctor relationship is trust and collaboration. If your doctor assumes the worst when you want to record your visit, then you need a different doctor.

So do it! Plan to record your next visit - and thank your doctor for his or her understanding of your need to review the recording later. The more of us who do so, the fewer doctors will be so intimidated - it will become accepted practice. And perhaps those doctors who see the practice as underhanded or threatening will get their attitudes adjusted, or will find another profession.

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Photo (c) Getty Images - Ron Levine

Ka-ching! Something's Fishy in the ER If You're Told to Arrive by Appointment

Wednesday March 19, 2014

When I was growing up, my mother would often tell me, "If there's something that doesn't make sense, then there's something you don't know."

For thousands of people who presumably had heart attacks by appointment (yes, you read that right) - well, then, Mom's advice certainly should have applied. What appalls me is that those people didn't ask more questions to get the right answers for themselves. Or, maybe they did....

Of course - the basic answer is follow the money. But, knowing what Mom used to say, let's figure out what we don't know, too.

A Bloomberg story tells about thousands of patients who were being told - for years - to arrive at the Mt. Sinai (NYC) Hospital ER on a Sunday morning to say they were having heart attacks. They were given appointment times to do so, and they were coached on what it was they should say when they arrive - that they were having "acute symptoms of heart disease." When they got there, they would be swept up by the ER cardiologists and whisked into the Cath Labs where stents would be inserted to treat those "acute" symptoms. Oh - and by the way - none of those patients had insurance.

Scratching your head? It doesn't make sense, right? Well, (thanks Mom), here's what you don't know:

1. Stents are little tiny mesh tubes that can open up a blocked artery. For those who are having acute heart problems, a stent may be a life saver. But for those whose arteries aren't really blocked, numerous studies have shown that stents are not necessary, and do not improve the status of patients who aren't suffering an acute heart event. The risks far outweigh the benefits. There are other less expensive, less invasive, and less risky ways to help those patients.

2. One of the most lucrative and sought after jobs in a hospital is that of interventionalist - the doctor who places stents in coronary arteries. There is lots of money to be made doing that job, plus the patients come and go (meaning the doctor isn't responsible for them on an extended basis), the patients are knocked out (meaning the doctor doesn't have to talk to them) and because they patient feels good after the procedure, the patient is grateful, too. What's not to like?

3. But now you can see the conundrum. Hospitals have lots of hungry interventionalists with schedules to fill. They only way they can be filled is when an emergency crops up. Patients with no insurance can't be turned away from the Emergency Room (see EMTALA) - so - hey! There's an idea! Let's create emergencies by appointment, make lots of money, keep our interventionalists happy and get Medicare and the government to pay us to do it!

So - you might ask - what's the harm here? It doesn't affect me! I didn't get a stent placed through the ER at Mt. Sinai, so...?

Here's the harm: it cost you and me money. As taxpayers, and as people who actually DO pay for insurance, you and I paid from our own pockets to make those interventionalists, and Mt. Sinai rich. Remember - the benefit was not to the patients themselves - not only did they undergo invasive, risky procedures for no reason, but they will now, also, be paying for the post-stenting drugs they will take for the rest of their lives and for any complications that might arise down the road.

No - the total benefit was to the hospital and to the doctors - to the tune of BILLIONS of dollars - and YOU AND I paid for it.

And so - once again - it looks like patients get screwed by the system. The stent-receiving patients were screwed directly and we taxpaying patients were screwed indirectly, thanks to those greedy cardiologist-interventionalists at Mt. Sinai.

Which is why I say, it's up to each of us to ask questions, to be smart about our care and to question those things that don't make sense to us. Because when we don't - we risk our money and our health, too.

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Photo (c) Getty Images - H. Armstrong Roberts

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