Patient Rights

I was talking to a patient a few days ago who was raving about a local grocery store.  \”They get it,\” she said.  \”They understand how to take care of their customers.\”
It made me think about how far medicine has drifted away from the same idea.  Ironically, despite the fact that our \”customers\” (people who pay us for our services) are seeking us so we can \”take care of\” them, we do a lousy job of taking care of our customers.  It has been an obsession of mine since I started practice, but it has been something that has been increasingly difficult to accomplish.  I now have to fight against the need to meet \”meaningful use\” criteria so that I can have time to make the record meaningful and useful to my patients.  I have to fight against the need to conform to \”medical home,\” criteria so  that I can make my practice the place my patients see as their ultimate medical haven.  The more the government and insurance industries push me toward focusing on my patients, the less time I have for my patients because of the need to meet criteria proving that I am caring for my patients.

It\’s a mess.

So I went back to my roots.  What do I really think should be the rights of my patients?  Here is a list that I made:

Patients have the following rights:

  1. The right to have access to care when it\’s needed
    1. This does not mean the care is done in the office either.  It can be done over the phone or via computer.
    2. The schedule of the office should accommodate the patients\’ needs as much as is reasonable to expect.
  2. The right to have care that is convenient
    1. They should not have to wait to be seen or wait on the phone to be heard
    2. They should not have to come in for problems that can be handled at home or work
  3. The right to have a doctor who is not motivated to have sick patients
    1. Having a doctor with the same motivation as the patient: to keep the them healthy
    2. Having a doctor who does not only react to problems, but works to prevent them
  4. The right to get care that is not rushed or distracted
    1. Visits are as long as they take to deal with the problem
    2. Phone calls aren\’t cut short from fear of offering \”free medicine\”
  5. The right to be treated as the one paying for the service of the doctors and their staff
    1. Patients should be satisfied with the \”customer experience\” in their doctor\’s office.  They should feel like they spent their money wisely.
    2. They should never feel like a \”number\” or that the visit revolves around the doctor.
  6. The right to have care that pays attention to cost and does not overdo care
    1. Good care does not mean overdoing it.  Good care means offering the care that is best.  Sometimes (often) that means doing nothing.
    2. Expensive labs, tests, and drugs should always be considered as to the benefit they offer versus the cost they incur.  
    3. The patient should be able to make an informed decision regarding the care they get, increasing their investment in following-through on things.
  7. The right to have access to all of their records at any time
    1. Online access to records is a must.  The lab tests do not belong to the doctor and doctors shouldn\’t be afraid of the patients seeing them.
    2. The part of the chart (most of it, actually) which the patient knows more than the doctor should be available to edit and control by the patient.
  8. The right to have a doctor who knows what is going on with them
    1. This means that the PCP should always have accurate information about any other care the patient has received.  Because of the state of our system, this does put some burden on the patient to communicate with the doctor.
    2. This means that all specialists should know why the patient is being sent.
    3. This means that hospitalists should know what\’s going on outside of the hospital and the PCP should know what\’s going on in the hospital.
    4. This means the PCP should regularly review patient records to know if care is being missed.
  9. The right to understand their care and not be afraid to ask when they don\’t
    1. Every visit should end up with a clear plan.
    2. Preventive services should be clearly understood and spelled out as to when they are due.
    3. The patient should have access to the doctor if confusion arises and get a quick answer to any questions.
    4. No care should be given without a good explanation.
  10. The right to be treated with empathy and respect
    1. Medical professionals should understand that it\’s hard to be sick, to have pain, and to die. 
    2. The interaction between doctor and patient is a human interaction – the interaction between to flawed individuals.  This means an expectation of perfection on either side will only result in bad care.
    3. Patients should never be afraid they are going \”to get yelled at\” by their doctor.  They should feel free to be open when they don\’t do the right thing.
The biggest irony is that making this list allows me to meet some of the criteria for \”Medical Home,\” and future criteria for \”Meaningful Use.\”  Great.  Check that off of my list.  The problem is that both of these criteria I am working on meeting have a net negative effect on my patients by making me more busy in checking off tasks and reporting data, giving me less time to actually give my patients these rights.
So what do you think about this list?  How should doctors work toward patient rights in a setting where we are increasingly burdened with criteria to prove we are meeting them?  How can we meet criteria when they themselves are one of the things keeping us from meeting their own goals?
I want to know what my patients want and what they need.  My ultimate goal is to meet those needs like the grocery store is doing, offering such good service that when my patients go to the grocery store they brag to the people there about the good care they get from their doctor.
Imagine that.

12 thoughts on “Patient Rights”

  1. Your patients probably *do* brag about their doctor.  I know I brag about mine — PCP, GYN, shoot, even my local “mommy” forum has a thread going that’s a song of praise to a couple of local pediatricians, including the one I use.
    Of course, it also includes a warning about one of the other pediatrician’s front desk staff.  Ouch.  But the pediatrician in question in that situation, too, is one of the highest-rated.

    The fact that you care about this and work to make sure you’re providing your patients with the best you can should be standard… but it’s not always.  I wish it were.

  2. Your list is awesome, and I hope you are able to make it a reality. I wrote a post about my primary care doctor (http://thepinkteeshirt.blogspot.com/2011/08/dr-r-this-morning.html) explaining an interaction in his office that I left absolutely knowing that he was the right doctor for me. When I first started seeing him, I had reservations because he has a heavy accent and I was afraid that would make it hard for us to effectively communicate. Boy was I wrong. I have known a few people who didn’t like him because his office decor is utilitarian. But are they going there to sit in a fancy chair or to get great care? I have called Atlanta Emory city because of the abundant amount of physicians that are available.  Dr. R is the right one for me.

  3. The most important things to me are listening to my complaint. honest answers (even if the answer is “I do not know”), and having a ball park idea of the costs of proposed care. From reading your blog, it sounds like you provide that and so much more. 

  4. Why in the world are you wasting time on meeting meaningful use and medical home criteria if they have such a negative effect on your ability to care for your patients?
    The life of a practicing physician is too short to deal on such garbage.

  5. Medicine is a business. I have staff to pay and kids in or going to be in college. It is unfortunate, but the reality of primary care is sometimes a choice between being paid and offering better care. As the tentacles of the government push in, they require more documentation. There is no way to deal with this other than to go off the grid. Not many PCP’s are interested in doing that. It is tempting at times, but the cost is pretty huge.

  6. (This is a reply to your last comment. I couldn’t get the reply box to work.)
    I’m a primary care doc also. When we did a very honest analysis of the expenses and revenue from reaching MU and PCMH standards, we found that it would be impossible to amortize these costs in the next 10 years, much less use them to improve the bottom line. Not to mention, as you are finding, it would greatly diminish our joy in practicing medicine.

    PCMH payments, if you can get them, are now around $2 PPM and dropping. Objective data, as opposed to PR releases, indicate that quality does not improve and spending does not drop. MU and PCMH are really about collecting data for the insurers and government, and not about improving the lot of the primary care doc.  Is it really worth it? Wouldn’t it be more fun, if needed, to skip the bureaucratic chores and just see one more patient per day? 

  7. I’ll try to figure out why the reply button does not work. Since we’ve been on EMR for 14 years, MU was almost an afterthought. It was an easy thing to attain for us, but as we press forward it does get harder. What you read in this post is my deliberation of whether I can put up with the hassle for the gain it gives. The sad thing is that I think it is important to use EMR meaningfully, and believe that care is far better with IT used in the right way, yet the government’s movement toward encouraging this has made use far less meaningful. Most of my patient rights in this list are best enabled with IT, but checking off boxes for the sake of number-crunchers at HHS or insurance companies has never done much for care (at best).
    I think we are at a crossroads in this. I am a passionate advocate for EMR, but an increasingly negative toward what’s happening with the adoption process. We are mired in the little details so badly that we are defeating the purpose. I’ve got lots more posting to do on this subject.

  8. Thanks for this – interestingly with seeing specialists at severeal different hospitals all of which are academic (has it’s pluses but also many negatives)  I see good and bad at each as a patient  it seems the good drs find a way to make it work often it woud seem at their own expense though and the bad drs someone still get ahead. Communication to me is one of the biggest things lacking in medicine – I have an ultra rare disorder (btw Febr 29th is rare disease day..)  and so not alot of drs know my disorder (MPS I H/S) but here again good ones learn and bad ones dont care. I do beleive in the patient as employer (to an extent) and only  1/2 jokingly kid other people that if we can hire a provider we can fire them to when they arent doing anything to help or making the situation worse. I think it’s going ot take alot of change on both sides!
    Erica
    http://www.rarelydefined.blogspotcom

  9. Rob, thanks for this. Sorry for the delay in responding – I’ve been overloaded & under the weather, a bad combo.
    I hear you (painfully) about the documentation issue.  I don’t know much about a lot of practices so I can’t generalize but I suspect you’re an example of a doc who didn’t NEED to be told how to be patient centered, so in a way you’re suffering because of the rules put in place to get the lagging majority to move in the right direction. I wish I had any useful suggestions.

    On a separate note – I’ve read a few things like this in the past and I know they’re often perceived by readers as a list of “doctors should ensure this.” That may be one angle, but I think here we’re hearing it from the perspective “the whole frickin’ system ought to be optimized to be sure this happens.” “Strongly Agree,” as they say on surveys.

    I don’t envy the people who work on policy and have to figure out how to move the masses in a way that doesn’t cause trouble for the good.  I sure know I’m experiencing the spectrum now, with the various conditions I’m getting treated for. One practice needs a solid whack in the butt. When I have time, I’ll shop and replace it.

  10. Thanks. I think the problem is that we are all far too easily satisfied with/resigned to the lousy system we’re in and the care it produces. My favorite saying is: “Your system is perfectly designed to yield the outcomes you are currently getting.” Our system encourages bad customer experience, unhappy doctors, excessive documentation, and bad outcomes. Doctors are too quick to dismiss some of this as impossible, and patients are too quick to assume it is all easily done. It’s still very important, however, to spell out our destination. That’s one reason I think it’s worth writing – I am doing my best, but I have to fight against a system that wants me mediocre or worse.

  11. Dave makes an excellent comment:
     “the whole frickin’ system ought to be optimized to be sure this happens”

    That is one of the (many, many) problems with the NCQA PCMH model. The system can’t be fixed by placing an intolerable administrative burden on the primary care docs, the one part of the system that is semi-functional for most patients. We can do data entry and team huddles until the cows come home, but it won’t improve anything until system-wide reform begins.

    To use PCMH group-speak, I’ve NEVER had a patient tell me I need to “transform” my practice. But every week, I have patients tell me to keep doing what I’ve been doing, not to sell out to the corporate medicine giants, not to close down completely. The PCMH model only makes it more difficult to offer my patients the type care they want. How can anyone call that patient centered?  

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