Last week's Health Affairs issued a report on a survey of 1,891 doctors about their beliefs and habits as they pertain to their communications with patients.  The bottom line?  "Do as I say, and not as I do."

This will come as no surprise to empowered patients, but the extent of the hypocrisy is, frankly, disturbing.

According to the Health Affairs abstract:

The vast majority of physicians completely agreed that physicians should fully inform patients about the risks and benefits of interventions and should never disclose confidential information to unauthorized persons.

And yet, according to Health News Review:

• About a third of physicians responding, "...did not completely agree with disclosing serious medical errors to patients."
• About 20%, "did not completely agree that physicians should never tell a patient something untrue."
• Nearly 40%, "...did not completely agree that they should disclose their financial relationships with drug and device companies to patients."
• About 10% acknowledged that they had told a patient something that was untrue in the previous year.

Dr. Otis Brawley, who writes for CNN, took a stab at explaining some of these results.  From suggesting that sometimes doctors just have bad days, to the fact that they are still human, to their fear of litigation...

...To ego. No, he didn't use the word ego, but that's what he meant when he said, "But my experience is that the discomfort of addressing one's own failings or weakness is more commonly the reason for not coming forward."

To many of us patients, the only thing new here are some real numbers.  We've known for a long time that sometimes our doctors are not entirely truthful.

But here's the problem....

We patients don't know when our doctors are, or are not, telling the truth. We don't know when they are shading the truth, or withholding the truth.  And according to this survey, and Dr. Brawley's explanation, it may be the very "best" doctors (meaning the ones we, ourselves, trust) who aren't being straight with us.

So here are some ways we patients need to protect ourselves:

1.  If you are diagnosed with something that requires any sort of difficult treatment regimen (surgery, chemo, radiation, lifelong drugs) - then be sure to get a second opinion.

2.  Even if your diagnosis isn't life threatening, you can double check other possibilities by trying the process of differential diagnosis yourself.

3.  Be sure you are being given information about all your treatment options.  Doctors may not tell you all of them, sometimes for understandable reasons, but too often because they just think you should do what they say (or because they can make more money from one option than another.)

4.  Do a good job of due diligence with any recommendations given to you, whenever possible.  Ask other patients, do some research online, find ways to either verify what your doctor has told you, or when you find alternatives, keep track of them and ask your doctor about them during your next visit.

4.  Don't put up with an arrogant doctor who can't communicate with you.  Find a doctor who will partner with you to find your best outcomes.

5.  Trust your own judgment and intuition 100% before you trust your doctor.  That may mean you have to change doctors if you believe you're not getting the information you need.

There are dozens of other things you can do to be sure you are getting all the information you need.  Now that we see real numbers that outline how often our doctors aren't totally honest with us - how can you afford not to double check and verify everything you're being told?

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For the past week or 10 days, I've been studying and writing about patients and privacy issues.  It was time to update some of the articles I wrote years ago, electronic health records (EHRs) have advanced since then, and once that FICO medication adherence score issue reared it's ugly head just a few weeks ago - it just seemed like it was time to make sure the information I provide about privacy is current.

Just in the past few days, I've published new articles that included a list of all the people and organizations who can get your medical records and use them for all kinds of reasons (believe me, the word privacy just does not apply!), information about all the ways our privacy is violated, health and credit issues, even the many ways supermarket loyalty reward cards might affect the cost of our health insurance.

And honestly, it's that kind of research and this kind of writing that puts me in one of my most cynical moods.  We know full well that American healthcare is all about making money from sickness, but when you really dig into all the violations of our privacy, and the reasons for those violations, well... cynical is too mild a word.

And then, this article from USA Today popped up in my google news alerts, causing that cynicism to sharpen even more.  It's a story about hospitals that are going through their patient records, mining them for the names and contact information of people who fit two criteria:

•  First, they have great health insurance, the kind that reimburses doctors and hospitals top dollar.

•  And second, they have the potential for a medical problem that is expensive to fix. That makes these folks great customers if the hospitals can lure them in.  Problems like heart disease, cancers like lung cancer, and orthopedic problems like bad hips or knees require expensive testing and treatment.

Goldmines!  Hospitals call it "customer relationship marketing."

Their goal, of course, is to convince those patients to become regular "customers" of their hospitals.  They offer them expensive screenings in hopes, of course, of finding expensive-to-treat problems. What we know from many other sources is that all that screening isn't necessarily a good idea. Well - at least it's not good for those patients, who may end up having more expensive tests, invasive procedures, and other  services offered that they will be too scared to turn down even if they don't really need them.  It's plenty good for the providers who are turning a profit.

We smart patients don't have many ways to arm ourselves except through information.  Make yourself very aware of the healthcare privacy violations that  take place constantly, and don't become a victim of someone's attempts to make money off care you may not really need.

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Suppose you are very sick - terminally ill.  You've been through the ringer with so many drugs, so many different forms of treatment, difficult side effects, very little quality of life...  now your doctor wants you to have ONE MORE THING - surgery.  If the surgery works, then it will keep you alive longer.

Since you trust your doctor, you make arrangements for the surgery.  You have no idea what to expect. You don't really know anything more than the fact that when you wake up, the surgery will be over.  You're not sure how long you'll be hospitalized, or how long it will take to recover.  But you're excited because you'll live longer!  So your feeling is... you just really want to get it over with.

But wait!

Along comes a nurse who spends some time with you as you lie in your hospital bed.  Since you realize you know next to nothing about your impending surgery and what to expect, you start to ask her some questions....

The more answers she gives you, the more you realize... maybe this surgery isn't what you want after all.  You had no idea what was involved, how debilitating it will be, how much pain you'll be in, how much it will impact any quality of life you have left, even how risky it is - and it IS risky.  You didn't even know you had a choice.

No one told you that you could refuse that surgery! And now that you know that... well, maybe you just don't want this surgery after all.  But what are your options?  What other possibilities are there?

So the nurse helps you understand.  She explains that you can say no, that hospice and palliative care are options.  As you talk it through with her, you realize that you'd rather not suffer the results of that surgery. You'd rather keep any quality of life you still have, even if it's for a shorter amount of time.  At least you know you have to give it some more thought before deciding to have this surgery.

And so, to help you further, the nurse orders a consultation with those who can help you further in the decision-making process - case management.

So for now, surgery is off.  You are relieved.  You go home to figure out what to do next.

But not long afterward, you learn that the nurse who was so helpful, the nurse who answered your questions and walked you through your options, the nurse who was truly your advocate, in your court, has been fired.

Why?

What hospital personnel told the nurse is that she was fired because she did the doctor's job.  Her job was not to educate a patient.  She was there to do what the doctors told her to do, not answer questions about treatment from her patients. And it was against their rules because she ordered a consult from case management.

They say the truth is stranger than fiction.... and in this case.... this is a true story. The nurse is Amanda Trujillo, and the hospital is Banner Del Webb Hospital in Sun City West, Arizona.

And we can make an educated guess that despite what the patient was told about why Amanda was fired, the truth is that she was fired because the patient decided against the surgery. The doctor and hospital had abdicated their responsibilities, therefore, not only had Amanda embarrassed them, but she cost them money.  That surgery would have meant big bucks for them!  But no longer....  and so, Amanda is no longer working for the hospital.

Further, for good measure, the hospital filed a complaint with the Arizona Board of Nursing.  Amanda can't get a job as a nurse anywhere else either.

So what does that mean for us patients?  Well, that depends....

It depends on whether we think nurses should be advocates and educators.  They are trained to be both and most nurses I know are great in both roles.  But clearly Banner Del Webb Hospital doesn't think they should be advocates or educators - and I suspect Banner Del Webb isn't the only hospital that makes nurse do their jobs with one or both arms tied behind their backs.  It would be like telling an auto mechanic he was expected to do everything else but work on engines.  Or telling a teacher she is supposed to teach everything but reading.  Having policies in place that restrict nurses from advocating or educating is a ridiculous notion.

Or - maybe not.  If it was against hospital policy, well, maybe Amanda should have paid attention? Didn't she realize it was against hospital policy for her to order a consult with case management?  Maybe she should not have stuck her nose into that patient's medical business.  Maybe she should have known better about the policies of the hospital and where her boundaries were....

What do you think?  Was Amanda doing her job?  Or did she cross the line?  Please take this poll and share comments below.

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Every day I hear from someone else who either needs help, or provides help.  Patient advocacy - helping patients get the healthcare they need and deserve - is becoming more important every day.

And yet - in general, the American public (much less Canadians, Brits, Australians, Greeks or others who I know read this blog regularly!) are barely even aware that professionals exist to step in and help out.

Yes - health advocacy professionals.  People whose only business is to hold the hands of patients (clients) who have undiagnosed symptoms, or a devastating diagnosis that requires hard decisions and difficult treatment, who need someone to make sure they don't get a hospital infection, or who can help them sort out their overwhelming medical bills.  Their work is focused on making those connections between patients and their providers that too often just don't happen the way we want them to, finding resources patients need when they don't know where to look, and facilitating all those aspects of healthcare that we never think of until we are faced with needing them.

Professionals who are paid privately - not covered by (or beholden to) insurance companies or other payers. Advocates who have no outside money influences or conflicts of interest which will entice them to steer you in a direction that improves their lives instead of yours (as in - follow the money.)  People whose only interest is in your improved outcomes.

So it's time to tell those stories - which is what we are now set up to do.

If you are a patient or health advocate or navigator and can share the story of one of your patient-clients that will help the general public understand the benefits of working with you - or any patient advocate - please share your story!

Patients will benefit by gaining a better understanding of how a patient or health advocate can help them.

And you, the advocate, may benefit from hearing from more folks who need and want your help.

•  Professional patient advocates and navigators:  Share Your Story

•  Caregivers and loved ones:  Separately, we have a place for you to share your stories, too.

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