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Do You Really Want to Know What's In Your Genes?


Genetic testing kits are available to the public. But are they worth the expense? Smart patients know what questions to ask, and how to figure out whether they will get what they pay for.

What's in Your Genes?
Patient Empowerment Spotlight10

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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Agree? Disagree?

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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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Agree? Disagree?

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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

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