Tuesday, May 15, 2012

THE BRILLIANT DOCTOR-EMPOWERED PATIENTS

This guy is a genius.  Dr. Rob Lamberts wrote this on his blog.  I'm big on the empowered patient thing.  I know I sound like a broken record when I advocate the need to be the head of your own medical team.  If, like me, you have an ailment that requires a multi-disciplinary approach (just a fancy way of saying you have a whole mess of damn doctors that you have to see in the course of a year), someone needs to be the captain of the team.  Someone needs to have all of the information.  In one place.  Someone should be leaving the office with copies of any test results. That person should be You.  If it can't be You, it should be someone you love and trust and someone who is willing to take on that role.  And they MUST be capable.  And THIS is why.  And a big shout out to Dr. Rob Lamberts.....  If you want to poke around on his blog where this post appears, just click the title and you will be whisked right over.


Don’t assume anything.  Ok, I guess there is one thing you can safely assume in our health care system:  the crash position.

Sorry.  Unfortunately, it is more true than I wish.
Assumptions can kill.  Assuming something regarding your own health care can cost you money, cause you pain, and kill you.  Here’s my list of potentially harmful assumptions:

1.  Standard care is the right care.

Much of what doctors do is based on, or at least consistent with science; but a lot of care goes on despite that science says otherwise.  A group of physician organizations recently banded together and published the Choosing Wisely Campaign, a set of “things patients and physicians should question.”  The groups urge doctors and patients to choose care that is:
  • Supported by evidence
  • Not duplicative of other tests or procedures already received
  • Free from harm
  • Truly necessary
Here’s a sample of things done frequently that the Choosing Wisely campaign suggests questioning:
  • Getting an x-ray for people with uncomplicated back pain
  • Using antibiotics for sinusitis lasting less than 7 days
  • Routine EKG’s on average (lower-risk) people
  • Routine screening stress-tests
  • Use of anti-inflammatory drugs (NSAID’s) in people with high blood pressure, heart disease, kidney problems, or diabetes.
There are many more recommendations on the site, but the reason this campaign was launched was because of how often these rules are broken.  I must admit, I have had to change my habits in the light of some of these recommendations.

2.  My doctors communicate

I am a primary care doctor, so I am supposed to be the hub of a patient’s care.  If a patient of mine goes in the hospital, has surgery, sees a specialist, or goes to the emergency room, I am supposed to be notified.  Unfortunately, this is probably not even true in of 50% of these situations.  Even when patients ask specifically to have records sent to me, they often aren’t there.
Specialists also have this problem, often getting consults without a clear reason.  Often this is a problem at the referring physician’s end, but we have had numerous specialists turn down offers to access our records.  We have also offered access to our records by hospitalists and ER doctors, only to be been turned down.  Many doctors prefer to give care with only information they gather.  It is rare that any doctor has all of the information that may be helpful.
An exception to this is the integrated care system run by a hospital (usually), in which doctors all share medical records.  Clearly the sharing of information in that setting is better than in my world, but being under the care of a hospital gives other disadvantages I will discuss later.

3.  My doctor has accurate records

Not only do I not have much of the information that comes from other doctors, but the information I do have in my records are not always accurate.  The biggest culprit in our office is old information that doesn’t get taken off.  It takes a large amount of time to make sure a person’s records are accurate, and there are no insurance companies willing to pay for improved accuracy.  So accuracy only happens when doctors take time away from reimbursed patient care and work to organize the records.  Again, our office makes a valiant effort at keeping things accurate, but I have found that it takes a huge amount of time, planning, and energy to keep records updated.
I personally don’t think this will change until the patient becomes responsible to keep their own records.  Nobody will ever care about a patient’s records as much as the patient does.  In the mean-time, I recommend that you keep an updated list of your medications, surgeries, problems, and even your family/home situation and bring it with you to visits.

4.  No news is good news

If you have a test done and don’t hear anything about the result, do not assume it is fine.  This assumption kills people.  I have too many patients with too much information flying at me every day for me to catch every important detail.  Sometimes things are missed, but sometimes the results don’t come to our office.   We have trained our patients to expect an email or letter with their results within a certain amount of time, so they sometimes call when the test results don’t come in.  I tell them to do so in the clinical summary sheet I hand out at the end of each visit, but the assumption remains.
Always know what tests are being run, and always get the results of those tests (in writing, if possible).

5.  I will be notified when things are due

Are you due for a colonoscopy, thyroid lab tests, a follow-up CT scan, or a diabetic eye exam?  Most people don’t know exactly when things are due, and many assume they will be notified when this is the case.  Gastroenterologists do often call when the follow-up colonoscopy is due, and mammography facilities sometimes call for a follow-up, but these are exceptions to this rule.  Doctors often say “repeat test in six months,” and then expect the patient to call to schedule after six months.  Even patients coming into the office may not be reminded of overdue tests, mainly due to the disorganization of medical records (#3 above).  If you think you might be due for something, ask.  Even asking the question, “are there any tests or labs I am due to get done?” can help remind providers to check for these things.  Remember, it is incredibly hard to keep records organize, so don’t assume your doctor’s office will act anything like Jiffy-Lube.

6.  Hospitals care

The commercials boast of how local hospitals are “there for you when you need them most,” and “your advocate for your health.”  This is horse hockey.  The people in the hospital may be caring and kind.  The doctors, nurses, and even administrators may want you to be healthy.  But the hospital is a business which requires people to be sick and have lots of procedures done to be profitable.  Most health care dollars are spent in hospitals, and many times those dollars do no good to the patient.  I’ve seen end-stage cancer patients get heart catheterization, people with dementia spend weeks in the ICU, and countless other procedures are done with no benefit (other than income to the hospital).
Don’t be fooled.  Your goal is to stay healthy and stay out of the hospital;  your doing so is bad for the business of hospitals.

7.  More is better

I have patients frequently asking for tests they don’t need.  Shouldn’t people get yearly lab panels?  Shouldn’t kids get their cholesterol checked?  What about those screening mobile tests for carotid artery plaques or PAD?  It’s hard to make my patients understand that in saying “no” to tests, I am being a better doctor.  I talked about this in an earlier post, but it bears repeating.  If someone has a high chance of having a condition, screening for it is useless (doing a strep test on someone with an obvious strep throat).  If someone has a very low chance of having a condition, screening for it won’t reduce the risk (CA-125 screening for ovarian cancer, for example).  Having more information is often not helpful, can lead to unnecessary worry or further testing, and costs a lot of money for no gain.  I don’t want more information, I want the right information.

8.  New is better

What about that new drug advertised on TV?  What about the surgery done by robots?  Should I take that antidepressant for pain?  Do I have low-T?  Should I go to the hospital with the brand new 200 gazillion dollar heart pavilion? Always look at advertising with a skeptical eye.  The main reason businesses spend money on advertising is that they want to make more money when you use the thing they advertised.  The 200 gazillion dollars for the heart pavilion has to come from somewhere.  There’s a reason why you first heard of “low T” on television and not from your doctor: the company who wants to fix your T wants your money.  Robotic surgery is surely cool, but it is also really expensive to buy that machine, and hospitals need you to want the “cool” surgery so they can pay for those machines.
Sometimes “new and improved” is a truthful boast, but usually it is a means into your wallet.

9.  The doctor will think I am stupid

I often have patients apologizing to me.  They apologize when they have a “weird” symptom, when they “ask too many questions,” when they stop taking a medication due to side-effects, and when they are really, really worried about something.  They seem afraid that I am going to roll my eyes and think of them as “one of those patients” – the kind that I complain about to my office staff.
I hate it when people apologize.  Apologies assume there is some standard or expectation that a person is not meeting, and the only expectations that I have of my patients is:
a. they have or want to prevent medical problems
b. They want my help.
Why should I get mad at people for either of these things, as it is the job of a doctor to help people who need them.  I know there are doctors out there who treat patients like bad kids or like they are morons, but those doctors are out of step with reality.  They are the morons.  I don’t apologize to the barber that my hair grew.  I don’t apologize to my accountant for having tax questions.  Understand your position as the paying customer; get what you paid for.
One warning on this one: viewing yourself as a customer cuts both ways.  If you have the right to get what you pay for, the doctor has the right to be paid for what they give you.  People often think docs should do what they do out of pure charity and kindness, which is wrong.  I may expect the mechanic to be kind and charitable, but I should also expect to pay them for what they do.  This means that expecting your doctor to spend 30 minutes with you and only charge you for a 5-minute visit is not fair to the doctor (or his wife and kids).

10.  Doctors don’t want to be questioned

I hope I am not unusual in this, but I would rather have patients question what I do than to accept everything I say.
Patients’ questions help me in several ways.  First, they let me know what I am not explaining well enough.  I think people follow instructions better when they understand them, so if you don’t understand what I said, ask.  Second, questions build my credibility.  If I can explain the reason for my recommendations, I am more trusted.  If I fear questions, then it looks like I am hiding something.  Third, and most importantly, questions sometimes lead to better care.  Sometimes patients ask me about something I haven’t considered.  Sometimes the questions make me think things through and see my faulty logic.  Sometimes questions make me look for information and learn something.
Good doctoring has a whole lot of teaching in it.  Teaching is not a goal in itself, however; the goal is to get the person being taught to understand.  If you don’t understand what’s being done, why you got a prescription, or what your diagnosis is, ask.  If you wonder about another possible diagnosis, ask.  If your doctor doesn’t like you asking questions, ask for a copy of your records and find another doctor.
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This material, written by me, is free to re-post and share under the Creative Commons agreement. In other words, use it all you want; just give me credit.


Thank you Dr. Rob Lamberts for reminding us that when we Assume, we make and ASS out of U and ME.  

6 comments:

  1. Thanks Anne Marie for pointing out Dr Lamberts’ post. Hearing this list from a doctor’s perspective is motivating. I think it could help many people navigating their care, and I might even share it on the FacingCancer.ca page.

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    1. Isn't it??? I LOVED this post when I saw it... It's definitely an eye opener. And, I ALWAYS love someone who can interject some wacky humor into a serious subject without minimizing its importance. Dr. Lambert is a genius. I think many will agree!

      Thanks, Catherine and I say definitely share it everywhere. This can't be seen enough!!!!

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  2. AnneMarie:
    Dr. Lambert's post was fabulous! I'm definitely sharing it. Like you, I'm a firm believer in guiding one's own destiny. Having been through mastectomies and chemo twice, I learned long ago it's in our best interest to advocate for ourselves and not settle for poor quality treatment or assume the doctor knows everything. They're human, just like us. I always go to appointments armed with my list of questions and I expect answers to every one of them!! Of course, I also need the list to remember everything I want to ask, otherwise I'd forget all the questions! :)
    Ellen

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    1. Ellen! LOL.... yes, need the list! Me Too!!!! Keep the humor going!!!! All kidding aside, this is such important information and maybe if those who are a bit timid about questioning their doctors can see from someone like Dr. Lambert that IT IS OKAY.... in fact, it's preferred, more will take charge of their own health. Thanks so much for taking the time to share your thoughts. I think it helps when others read from "real people" like you who are their own advocates. No one cares about our bodies or knows our bodies better than the one who actually inhabits that body. Again, thanks for sharing :)

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  3. Ann Marie,

    I completely agree. You have to be the captain of "your team" if you're able. Someone close to you, both willing and able, can fill in if need be.

    Thanks for sharing this list. Empowered patients are the best kind for sure.

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    1. Thanks, Nancy...

      I love the way Dr. Lamberts put it out there! When he started with a crash position, I figured I'd be in for a great ride. It is important to be engaged and informed and educated and empowered.... and unfortunately, some people do not realize the importance.

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