When I was diagnosed with terminal lymphoma in 2004, I was told on no uncertain terms that I MUST begin chemo immediately.  Period.  No discussion.

When I asked my (very arrogant) oncologist why he prescribed chemo, his reply was that it was the only way I could buy myself extra time.

When I asked how much extra time, his reply was that I might have up to one year more life.

When I bawked, and told him I needed to think about it, he was furious and condescending.  Clearly there was something wrong with a woman who didn't just do what he told her to do!

Here is the major disconnect:  It never occurred to him to wonder whether I wanted extra time, whether I wanted to spend what little time I had left sick and debilitated, to spend every penny I had ever earned on chemo (because I had lousy, high deductible health insurance) - or anything else about my own wishes.

He just wanted me to do chemo.  (He just wanted to make money by putting me through chemo.)

Of course, as it turns out, I never did do chemo, or any other treatment for that matter.  My story, and the fact that I came up fighting, is now the basis for my patient empowerment work.

But one of the things that has upset me for all these years is that very question:  why aren't patients able to make difficult medical decisions by weighing their personal goals, priorities and values against the outcomes from their various treatment options? Why does no one ask us about those aspects of our lives?

Well - today we are and in some cases, they do.  Through a process called Shared Decision Making.  While that may sound like something we just DO - it's actually a formal process that walks us, step-by-step, through making decisions about our treatment that is rooted in two important things:  who we are, and what the evidence is.  Once completed, it provides us patients with confidence and peace of mind that we have made exactly the right choice for ourselves.

Learn more about the benefits of the Shared Decision Making Process.

Learn about how SDM works, and what is required to make it work.

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... a great quote (not my words!) from empowered patient Hugo Campos....

Here's the story behind that headline, a story we are beginning to hear more frequently, and which may even feel familiar to you.  A travesty, really.

Hugo Campos, who lives in Oakland, California, is a highly engaged heart patient.  Hugo has a defibrillator implanted near his heart to keep his heart pumping even when it thinks it would like to stop. That defibrillator constantly pumps out data which indicates how well it's working, how often it must kick start his heart, and more.

Shortly after it was implanted, Hugo asked to see the data; afterall - it's HIS heart, HIS defibrillator, and they are HIS medical records, right?

Wrong. The doctors and the defibrillator's manufacturer are the only ones who can access Hugo's data.  And that makes him mad.  (It would make me mad, too.)

There's no doubt Hugo could make a stink about it;  in fact, at times, he has.  We know he has a right to his medical records, and we have to wonder, how can he be denied access this data?

But that's not what this post is about.  The post is about the fact that Hugo, in pushing the subject, may be labeled as "difficult" by providers.  With that label, his relationship with his doctor becomes strained.  Ultimately he may find himself with no doctor. Or perhaps he'll find himself getting substandard care from the doctor who has labeled him as difficult.

Previously we've addressed the idea that there are times when doctors just don't want to deal with us - and some of those reasons, quite honestly, are fair.

But this new spin on the concept of "difficult patient" is actually quite frightening. More and more we patients are being encouraged by friends, family and the media (including right here at the Patient Empowerment site) to advocate for ourselves, to share in our own medical decision-making.  But it seems that to some doctors, just doing what makes sense might get us labeled as difficult - and we will be unable to get the care we need.

Yes, quite frightening. Highly unethical. Anti-Hippocratic oath at the least.  But then, those doctors who commit this sin of providing no treatment or substandard treatment to their patients - they don't really care.  They're just looking for a paycheck.  Their patients' outcomes are so secondary to their personal concerns. Follow the money, after all.

For that growing number of doctors, our only choice may be, as Hugo noted, to "Consent, comply and basically shut up".

We patients must protect ourselves from these unethical providers.

It's a fine line, and we do have options, although those options may require quite a bit of finesse - not easy when you're sick or hurt.  But as the pressure mounts for providers to provide more while being reimbursed less, requiring us patients to take a far bigger role in our own care, it pays to understand the problem, to avoid crossing the line - or to find another doctor when the going gets too tough.

Make yourself familiar with the problem and what to do about it:

•  Doctors Complain About Patients' Behavior

•  Doctors Reject Difficult Patients, Denying Them the Medical Care They Need

•  Have You Been Blacklisted, Blackballed or Denied Medical Care?

•  How to Repair Your Relationship With Your Doctor

And - if your care has been affected negatively - please share your story along with lessons others can learn from it.

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A few days ago I told you about the new sunscreen labeling requirements the FDA is imposing on sunscreen manufacturers - requirements that were supposed to go into effect in just a few weeks (June 2012.)

Those rules were provided to sunscreen manufacturers in mid-2011.  But now manufacturers are threatening sunscreen shortages in 2012 because, according to their industry spokesperson, they haven't had time to implement the new testing and labels.  If they can't meet the labeling requirements, they might have to stop selling their products until they do.

The conundrum: offer the public sunscreen with deceptive labeling that offers at least some protection?  Or provide no sunscreen at all?

So the FDA has postponed the required implementation of the new sunscreen labeling rules until December 2012.  (Some smaller manufacturers have until December 2013.)

What does that mean to us sunscreen consumers?

It means we can't trust what we read on sunscreen labels. It means that when we see "sunblock" or "waterproof" - they aren't. And when we read "broad spectrum" - they might not be.

And then there's SPF - which will probably be correct, but which most of us draw the wrong conclusions about.

Here's more (updated) information about what you can, or can't believe about today's sunscreen labels, what the changes effective December 2012 will be.

As best you can before December, stay sun safe - and enjoy your upcoming summer.

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(Update!  The FDA has delayed implementation requirements for the new sunscreen labels - read more.)

Today we'll put on our consumer hats...  Since I'm NOT a fan of using the term "consumer" to describe patients, you know I'm out of my comfort zone just using it....

But I learned recently that the FDA had decided to force testing, requirements and new labeling for sunscreen.  Why?  Because - surprise!  What the labels on sunscreen said, and the truth, were two different things.

(Why am I not surprised?)

So as I studied more about what the changes were, and what had instigated the FDA to create its new stringent, testing-based requirements, I also ended up learning all kinds of things about sun exposure and sunscreen that I had never understood before.

In a few cases what I thought I knew - was wrong.  For example:

• I always thought that SPF was a measure of how well I would be protected from skin cancer.  Wrong.
• I always thought that SPF-30 provided twice the protection as SPF-15.  Wrong.

And the list goes on.

You may have some real misconceptions about sunscreen, too.  Further, you will want to know what is different in the new labels now, and why.  For example - why is it you can no longer buy waterproof or sweatproof sunscreen?  (Because neither one ever existed to begin with - even though the labels said they were waterproof or sweatproof.)

•  Learn more about Sun Exposure and Your Health

•  Learn more about The New 2012 FDA Labeling Rules for Sunscreen

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