Time to lighten things up.  Since I am a bit weary (and more than a bit lazy), I’ll repost one of my favorites:

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Well, let’s get this thing off the ground. Right off the bat, Awesome Mom asked in incredibly good question:

“Why does my husband think that putting ketchup on tacos is a normal thing to do?”

Given the fact that I happen to have spent some time doing basic taco research, and that I have eaten both tacos and ketchup (although not simultaneously, I must admit), I am the perfect person to answer this question (although a guy in a taco suit may also be a good candidate).

Most men do not put ketchup on tacos. It is actually a condition that occurs in 1 in 5,000 people, with a preponderance of these being men. The taco/ketchup combination is what is known as a x-linked recessive genetic disorder.

Genetically, the difference between men and women is that women have two “X” chromosomes, while men have one “X” and one “Y” chromosome. The x-chromosome does not, in fact, look like an “X” at all, but instead looks like a worm with a waistline (as pictured above). Why is it named “X” then? Well, it has a tendency to get tangled up with the other x-chromosome and so when researchers first saw it, it looked like a “X.” Besides, “worm with a waistline” chromosome would just not have sounded very good.

The y-chromosome is much smaller than the x-chromosome, and does not look like a “Y” ether, but instead looks like a much shorter worm with a much lower waistline.

You may have noticed that these chromosomes are striped. Those stripes are things called genes. Genes have a tendency of alternating between black and white, which has made it much easier for scientists to crack the genetic code. Another thing that made it easier to crack the code were the little lines with numbers and letters. Nobody knew what these numbers and letters meant for many years, but through painstaking research, they have determined that these letters are a code that tells your body how to be either a man or a woman.

You may have also noted that x-chromosomes have many more genes than y-chromosomes. Many scientists believe that the feeling by many women that jeans make them look fat comes from the fact that there are more genes in a women’s body, and this is actually a cry for help from the chromosomal level. Other scientists think these scientists are just full of hooey.

We get one set of chromosomes from our mother, including one x-chromosome, and one from our father: either an x or a y. For a trait to be expressed on the outside of a person, it must (in most cases) be present in both sets of chromosomes. X-linked conditions occur when a genetic trait is expressed on the the x-chromosome. The y-chromosome is too wimpy to put up much of a fuss, so a man with a trait on the x-chromosome will have the genetic trait. For a women to express the trait, both x-chromosomes have to carry the gene for that trait.

A good example of this is the most common form of color blindness. If a man has this trait on the x-chromosome, he will be color blind. For a woman to have the same type of color blindness, she must have the gene on both of her x-chromosomes. That means, a man will get his color blindness from the x-chromosome of his mother (since he had to get the y from his dad). This can be seen in the diagram below.

So it should be becoming obvious that putting ketchup on the taco is a x-linked disorder. It is, in fact, carried on the Xp-11,12 gene. This means, Awesome Mom, your mother-in-law is responsible for passing this gene on to your husband. Some have postulated that this too is a bunch of hooey and that the whole x-linked theory was made by some angry woman scientists who wanted to blame things on their mother-in-laws.

What can be done about his taco/ketchup tendency? Gene therapy is something that could help. To do so, you can either take a virus that goes for the x-chromosome and alters the Xp-11,12 gene to no longer favor this combination, or the virus can tell the y-chromosome to stop being such a wimp and stand up to that nagging x-chromosome. Since scientists are not sure what trouble an embarrassed y-chromosome would cause, this latter solution is not favored.

Putting down the toilet seat, by the way, is a trait carried on the x-chromosome as well, but the y-chromosome is sick of being pushed around in most men and makes a stand when it comes to putting the toilet seat down. Sorry, there is little hope for that one.

So that is the first installation of “Ask Dr. Rob.” Hopefully it will not be the last. If you have other questions that need answering, please send an e-mail to dr.rob.questions@gmail.com.

Thanks Awesome Mom!

I’ve been getting a lot of traffic lately…and a lot of comments.  Perhaps you’ve noticed.  Overall I see this as a good thing; I write to be read, not to be a voice echoing in the virtual void.  I want to share my thoughts and ideas and enjoy my interaction with people, even those who don’t agree (especially with them).

But a few things have happened lately that have saddened me.  The first was the reaction of some to the post about Chronic Disease.  Most of my readers saw this as it was meant: a look into the not-so-perfect psyche of doctors and some tips on how to handle them successfully.  Some, however, accused me of “victim blaming.”  They were offended that I would suggest that patients should be aware of how they came across to doctors.  They felt that I was being patronizing by assuming a I know how they felt (despite the 1st half of the letter dedicated to the opposite).  I have re-read the post several times and am convinced (as are the majority who read this) that my tone was not at all “victim-blaming”

Then came my most recent post on autism.  The whole purpose of that post was to lighten up a little and share a joy I have found in my autistic patients.  It was meant to be a warm and fuzzy post, but was picked up by an autism activist site who read my intent as calling autism the “new normal.”  Again, I re-read the post and see no evidence of that whatsoever.  I have seen that patients like those with autism, Down’s syndrome, and other significant mental/social disabilities can teach me things about myself.  I am not God (despite what some commenters think of my opinion of myself), and I actually believe in the idea of “the last shall be first” – that our greatest victories in life come from humbling ourselves and listening to those the rest of the world shuns or ignores.  I see more of God in the eyes of these people than I do the CEO’s and other “successful” people who come to my office.  I see my own pride and self-centeredness, and I am grateful they show it to me.

So why would two posts that are actually positive in nature elicit such a negative response?  Why would people unleash the guard dogs on someone who comes as a friend?  I can only guess, but I suspect that I somehow reduced their victim-ness by what I wrote.  Some people seem to identify themselves by what bad life has dealt them, and any threat to that identity is met with hostility.  I think that’s what I saw.

I don’t deny the pain they have in their lives, and I don’t deny their victim-ness.  I would not trade places with chronically ill patients or with parents of autistic children.  But things are what they are.  People do have chronic illness and parents do have autistic kids.  That is the pain in life that I know intimately as a doctor.  What is sad to me is that in maintaining their status as victims – avidly defending the reality of the pain in their lives – they attack those who wish to help.

That is sad.  I am very sorry I can’t help.

But it’s time to call off the dogs.

I’ve been practicing for sixteen years now, doing both internal medicine and pediatrics.  One of the joys of that is watching kids under my care grow up and not having to give up their care just because they get older.  The spectrum is wide, with some kids growing up in “normal” families with “normal lives,” others in “abnormal” families, and yet others with inherently “abnormal” lives due to illness or disability.

But the kids aren’t the only thing that has changed over the past sixteen years, their doctor has changed as well.  My comfort zones have widened, not getting rattled by “abnormal” as I once did.  I used to feel uncomfortable with the mentally and emotionally disabled, now I am not.  I used to feel sorry for parents with “abnormal” children.  I used to feel bad for kids who were “abnormal;” I still do now, but not nearly as much.

Of course, they all are well-aware that they have an “abnormal” doctor.  OK, you can lose the quotes on that one.

These emotions have been most transformed in my attitude toward autistic children.  Autism used to make me very uncomfortable.  I felt awkward talking to their parents.  I tried to avoid the topic.  How the parents must wish their kids were “normal,” and how the kids would wish they were “normal” (if they could).  I felt pity.

But as the years have gone by, I’ve discovered an amazing transformation: I now really like my autistic patients.  These are often some of the more enjoyable visits.  I’ve also noticed that, contrary to society’s perception, the parents of autistic kids are not in mourning.  They are not living in a constant state of “what could have been.”  They are often smiling.

Society likes to take a group of people, call them “abnormal” and feel sorry for them.  Disabled children are the center of our societal pity, with the torch-bearers for this being Jenny McCarthy and the other avid anti-vaccine folks.  Unlike the lepers of biblical times, these kids and their parents don’t have to cry out “leper, leper!” to be avoided by others; they are avoided by default, pitied for what others don’t understand.

But as I have gotten to watch these kids grow up and have become closer to their parents, I’ve noticed the following:

• They get better over time.  Children I once felt sorry for I am having conversations with.  They are not “normal” – they are unique.  Autistic kids mature over time, just like “normal” kids.  Autistic kids become more aware over time, just like “normal” kids.
• There is an innocence and a lack of guile that is endearing.  They don’t lie to me, they don’t beat around the bush on issues.  Sometimes I get surprised by what they say, with it’s bluntness, but I don’t mind that anymore.
• They are generally happy.  They don’t seem to carry the anxiety that has become rampant in our society.  They do get angry and obstinate – sometimes at a very high volume – but once that dies down, they become content once more.
• As they gain function, they also gain a unique sense of humor. I don’t think I can explain it better than this, but I often find myself laughing when I’m seeing them.
• The parents are proud of them.  Once they can drop their societal defensiveness from universal pity, they delight in the accomplishments of their children.  Perhaps this is because they don’t  take things for granted; perhaps they don’t feel entitled to “normal.”

I’m not saying that there isn’t hard stuff that’s unique to raising autistic kids.  I am not saying that we shouldn’t be devoting resources to helping these kids and figuring out the cause of autism.  What I am saying is that we need to get beyond the pity.  These kids are not lepers.  They are unique people with their own strengths and weaknesses.  They bring me joy when I see them – more joy than many “normal” kids bring.

Normal is overrated.  Normal is arbitrary and evasive.  Nobody is normal; we all bring our own uniqueness to this world that should be appreciated for what it is.  A very large portion of the “normal” people I see are anxious and unhappy.  I doubt the suicide rate among autistic teens is anywhere near that of “normal” teens.

So, to all of you “normal” people out there I say: get over it.  Don’t be afraid, and please lose the pity.  After you involve yourself with these and other kids with disabilities your life won’t be “normal,” but who needs “normal” anyway?  We all need to lose a little “normal.”

To all of those autistic kids I’ve seen I say: thanks for teaching me the arbitrary nature of “normal.”

For those who greet doctors with snarls
You should go and read Dr. Charles
He writes with both thought and compassion
And his stories can really be smashin’

And if there’s a poet inside you
But accolades have been denied you
Then send him your very best verses
You patients and doctors and nurses

This contest should give motivation
Your sonnets could win acclimation 
The verse should be healthcare related
And still be poetically stated

This contest is not for the slackers
He’s giving up five hundred smackers!
For those who don’t need him to pay dough
He’ll throw in a cherry tomato.

It’s not our fault

Getting Along (Part 1): Doctor Rules

Favorite

Shame

Dear Insensitive Person

How to Be A Good Patient

Ask Dr Rob: Resilience

Joi De Vivre

An Open Letter to Consultants

These are a sampling of older posts that highlight the fact that I feel the patient, not the doctor, is the center of the universe in the exam room.  I have always said that in this blog, and those who are new here need to hear it again.  I am a primary care doctor who loves his patients (most of the time) and hates to see them treated poorly.  The last post in particular is one I wrote out of total frustration at how my patients were being treated by other doctors.

Thanks for visiting.

A thought struck me when reading an excellent post on Warmsocks’ blog.  The vast majority of responses to my recent posts on doctor/patient relations have been positive.  Yet a vocal minority of people have read what I wrote in a negative light – that I am somehow projecting my doctor arrogance into those posts and am patronizing people with chronic illness.

Warmsocks’ interpretation of my posts was that I was asking people with chronic disease to act like normal patients and pay attention to whether or not they were part of the problem.  This is relationship 101; when there is a dysfunctional relationship, it happens because there are two people involved.  The times that I have really messed up in relationships have been largely due to the fact that I ignored my own pathological behavior and assumed the other person was the one who needed to change.  My experience teaches me that there are usually equal parts of pathology on both sides of the equation.  My job is to heed the serenity prayer:

“God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

As I was thinking about this, I saw a very striking parallel between what has transpired on this blog over the past few days and the subject of doctor/patient relations.  The people who are regular readers of this blog, those who know how I think (and are not totally terrified) will read my words with a level of understanding that new readers can’t have.  They have a much larger experience with my personality, my writing style, and my overall attitude, and so can read me without misinterpreting what I am saying.  They know me, and so don’t have to wonder as much what I mean.

The same thing is true with doctors and patients.  If you build a relationship that is non-adversarial, it will make listening a lot easier.  This definitely applies from the doctors perspective; docs need to listen to their patients, get to know them, and understand their perspective to be able to give good care.  When I see a patient for the first time, I have to guess as to what certain things mean.  The quality of the guess is dependent on my skill with listening and the patient’s skill at explaining themself.  As time goes by, however, I can understand them much better through experience.  It is key that I do this based on what I know about the patient.  I have to have a relationship with them – a real relationship.  I have to know them.

The same thing goes for patients.  Going to the doctor is as much about building relationship as it is about receiving care.  The jerky docs out there are not going to be willing to accept relationship, while the sensitive docs will listen and open up much better.  But still, it is very important to figure out who it is that is sitting across the room.  It is important to put down agendas as much as is possible (I do realize it’s not always possible), and to build relationship.  You need to know your doctor.

So, to those who are new to this blog I say, read other stuff.  You will understand me much better if you don’t base your conclusions on a single post.  I will continue to listen and try to figure out if I am communicating badly (which is my responsibility as a writer) and correct where needed.  That is the benefit of social media – that people give me immediate feedback as to how good of a job I have done at communicating.

To those who have stuck with me and read regularly: thanks.  I thrive on that relationship as a writer.  I write to be read and write to be understood.  It’s nice to be known.

I was planning on leaving behind the seriousness of the past few posts and going back to my usual inane writing, but some of the comments have made it too hard for me to keep quiet.  The response has been largely positive, and overall it has been overwhelming.  More people have read or commented on my letter to patients with chronic disease than any in recent history.  I am grateful that it is circulating around the web for others to contemplate, perhaps understanding the intent of what I wrote and improving their relationship with their doctors in the process.

The purpose of the letter was to give some helpful insight into the emotion on the other side of the equation.  I can’t understand what it is like to have a chronic illness without having the disease, but it is still fruitful for me to try to figure this out.  In the same way, patients with chronic illnesses benefit from a better understanding of the doctors they see so frequently and depend on so greatly.  I can sympathize, but I can’t feel the pain.  Still, I do need to listen closely to patients so I can have the best relationship possible.

Some folks felt that I was saying that doctors need their egos stroked and to be treated special, but that is not what I meant to say.  Each person needs to be understood and treated as their situation dictates.  People with chronic illness want to be understood (as witnessed by the incredible response to my letter!) and treated based on that understanding.  Doctors want to be understood as well.  So let me tell you my side of the story.  What is it like to sit in my chair?  I don’t say this for sympathy or pats on the back, I say it to be understood.  If I am better understood by my patients (and readers), my relationship with them is better, which is good for both of us.  I think I represent a fair percentage of primary care docs in these ways.

1. I care about my patients – As hard as I try to “just do the job,” and not expend the emotion I do during the day, I couldn’t live with myself if I let my patients down.  They depend on me for a lot, they pay for my service, and they deserve my best.  I’ve been told I do this to a pathological degree (along with my llama obsession), but it is there.  I want to help them.  I get frustrated at my powerlessness and am genuinely happy when they do well.

2.  I am tired – Each day demands an emotional price.  Some days the demand is not so high, others suck the life out of me.  Being “needed” cuts two ways; on one side it is nice to truly help people when they need the most help, it’s satisfying to see your life making a difference.  On the other side, it is a never-ending river of need, pain, and crises to be handled.  Being patted on the back (or patting myself) is nice, but it doesn’t mean anything for the future.  Each day brings new hands to hold, needs to meet, problems to be solved.  Each day is as much a burden as it is an opportunity.  That burden won’t leave me until I take down my shingle, yet the opportunities to make a difference will make it hard to take that shingle down.

3.  I also run a business – In terms of priorities, I need to pay my staff, pay the rent, and pay my personal bills to even have the chance to take care of patients.  I get frustrated when patients insinuate that I value money too much.  I get very frustrated by that, actually.  People seem more willing to pay for cable TV, cigarettes, or eating out than to pay me for what I do.  I earn less than most other medical specialists, yet some people resent my income.  The mess of a system we have works against primary care and works against complex patients.  If I spend 30 minutes with a complex patients (I do spend 30 minutes with people regularly), I am paid about 50% more than if I see a 5 minute ear infection visit.  Doing the math says that my mind is not valued and that I should see more ear infections and less chronic patients.  All of this adds to my daily stress.

4.  I am actually a person, not just a doctor – I have four children and a wife, and being a dad and a husband isn’t easy when I come from work with the emotional life sucked out of me.  I struggle with my own emotions and I get sick.  I worry a lot about money, and I feel insecure about the fact that despite being a doctor, I am not saving enough.  Hence I also struggle with working too much.  Life’s not easy for anyone, and despite my title I am not exempt.

5. I hate bad doctors – Many of the comments to the letter I wrote were lamentations about doctors who suck.  Unfortunately, doctors who take bad care of their patients make my life miserable too.  I have to clean up their messes, I have to re-teach their patients on what medicine should look like.  I have to wean their patients off of addictive drugs that they didn’t have the guts to deny. I am personally frustrated when I send a person to a specialist and they don’t do anything or upset my patient, and I hate the fact that they almost never communicate with me.  It makes my already hard job even harder.

6. My blog is a refuge and a tool – I am thankful that I have this blog as a means to vent, to use another part of my brain (some may argue that point on some of my posts), and to make a difference.  I actually have a voice in the whole healthcare reform debate.  I actually can reach a large number of people and make their medical experience better (which was the most gratifying thing to hear in the comments to my letter).  I’ve made practically no money doing this, but I’ve gotten a whole lot out of it.

That’s my story.  Like it or not, it is what it is.  I am just a guy who happens to be a doctor – the same as the rest of the doctors out there.  There will always be angry people and idiots on both sides of the doctor/patient relationship, but no matter what, the doctor-patient encounter is a human thing.  Love is human, war is human, murder is human, and so is childbirth.  You can’t put humanity into a bottle, you can’t throw a single label on it.  The highest calling is to enter into another’s life, to see things from their perspective, and to add good to it.

That goes for all of us, regardless of letters behind our names.

Thanks for listening.

I went to a patient’s funeral this past weekend.  I generally don’t do that for people whose relationship I’ve built in the exam room.  It’s a complex set of emotions, but invariably some family member will start telling others what a nice doctor I am and how much the person had liked me as a doctor.  It’s awkward getting a eulogy (literally: good words) spoken about me at someone else’s funeral.  This patient I had known prior to them becoming my patient, and his wife had been very nice to us when we first moved here from up north.

But that’s not why I am writing this.  As I was sitting in the service, the thought occurred to me that a patient’s funeral would be considered by many to be a failure for a doctor.  Certainly there are times when that is the case – when the doctor could have intervened and didn’t, or intervened incorrectly, causing the person to die earlier than they could have.  Every doctor has some moments where regrets over missed or incorrect diagnosis take their toll.  We are imperfect humans, we have bad days, and we don’t always give our patients our best.  We have limits.

Yet if patient death was the measure of a doctor’s failure, then all doctors would be 100% failures in the big picture.  Doctors are not the only imperfect thing; the human body is frail, people make bad choices about their own health, and life itself is hard and unpredictable.  In reality, doctors are putting  a finger in a dike that is crumbling to pieces.  We are stalling, holding off the inevitable when we succeed, and standing and watching the inevitable when we fail.

This doesn’t just apply to death, it also applies to suffering.  The huge number of comments on my last post bear witness to the vast numbers of people with chronic pain, illness, and suffering.  It some ways, for a doctor, the death of a patient is easier to deal with than the impotence felt when we are unable to help a suffering person.  There is always the question of whether we are missing something that could help.  There is the pressure from the expectant face that hopes we can fix what has been unfixable up to now, and the weight of the defeated faces of those who have lost that hope.  It’s hard to stay above the emotion of those encounters when your stated job is to fight disease and minimize suffering.

Which brings me back to the funeral service.  After the service I greeted the man’s wife with a hug, reminding her that I am available to her if she needs anything.  She thanked me for the care I gave to her husband and for the ways I’ve helped her through this time.  In a lot of ways, it was my presence that mattered most.

The word “sympathy” comes from the root words meaning “to feel with.”  The word “compassion” comes from the root words meaning “to suffer with.”  I remember once looking at a beautiful mountain vista by myself, thinking how much better it would be if there was someone to share it with.  The addition of that person wouldn’t add to the beauty, but it would somehow validate it if someone else shared the awe and wonder I felt at that moment.  My role as doctor is not just to stand with people, but to help them.  Yet I cannot forget that I do see their pain without veil, I do experience the difficulty people live, they don’t hide their tears from me; and that fact somehow made it better for them.

Perhaps that is what many of the docs who flee the chronically ill patient are missing: you don’t always have to fix things to make them better.  You don’t always have to relieve suffering to give care.  It’s great when you do, but in the end the most important thing is to be there.  To feel with and suffer with people as they make their journey through this life.

Dear Patients:

You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know.  I do have information that you can’t really understand because of your unique perspective, your battered world.  There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.  It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain -  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have.  You see why you scare doctors?  It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.  I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand.  You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors.  There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:

1. Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.
3. Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.
4. Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won’t try to fully understand you.  That’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
5. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can’t work that way, and I don’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems.  It helps me to prioritize with them.
6. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don’t feel you have to put up with docs who don’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn’t totally suck.
7. Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.

You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living.  I hope this helps, and I really hope you get the help you need.  It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.

Sincerely,

Dr. Rob

Post Script: This post has generated a huge amount of conversation and interest (as witnessed by the large number of comments!).  I very much appreciate the dialogue it has spawned both here and across the web.  I’ve subsequently written follow-up posts explaining my thoughts in more detail – largely in response to the comments here.  One of them discusses in more detail my own experiences as a doctor and the second talks of the importance of  knowing and being known.  Reading these will give you a better picture of my thought process and perspective on this.
Dr. Rob

OK, I am an EMR fan-boy, I will admit it.  I seem real “rah rah” in my approach to computers in the exam room, and to many I seem to have my head in the clouds; I seem to be out of touch with reality.  In response to posts I have written on the subject, comments have been thus:

“I couldn’t see as many patients if I had an EMR.  It would slow me down too much.”

“Using an EMR makes doctors ignore their patients and focus too much on the computer screen.”

“EMR is too expensive for the small practice or primary-care physician.  It will reduce their income in a time when it’s hard enough to function as a PCP.”

Yeah, yeah, yeah.  This is very familiar to me.  It’s also wrong.

True, there is a start-up period of getting used to the EMR in which you can’t see as many patients, but that goes away.  True, there is a time when you are uncomfortable with the computer in the exam room, but once you get used to it, it becomes as natural as having a paper chart.  True, EMR start-up expense is high enough to make doctors, especially PCP’s, wonder if they can afford the cost in this time of austerity.

I understand these things better than most people give me credit for, because I have lived through each of these troublesome sides of EMR personally.  Here is my EMR story:

I started thinking about using an EMR in 1995, when I saw how difficult it was for me to keep track of information in the record.  This came to a head in 1996 when the result of a test was missed, causing harm to a patient.  The problem wasn’t in the thought-process or in the intelligence of the doctor; the problem was from flaws inherent in a paper medical record.

I was practicing with another PCP at that time.  We were employed by a hospital, but were growing increasingly frustrated with their lack of interest in running our practice efficiently.  So we left them in 1996, bucking the trend at that time of hospital ownership of practices for the sake of personal control.  It put us under far more financial pressure, but the control made it worthwhile for both of us.

Feeling the sting of the missed test result, and feeling the empowerment that self-employment brought, my partner and I set about to look at EMR products.  My brother-in-law worked in a nearby practice that had already been on EMR for a few years and was functioning far more efficiently than we could ever hope with our paper record.  We both visited his practice and saw just how much we could gain from a computerized record.  Once we saw this, the question was not whether we were going up on an EMR, it was which EMR product we’d choose.

We narrowed our choice down to two products: one that was well-known and well respected, but more expensive; and one that was cheap, slick, but had a very small user-base.  We were sorely tempted by the slick sales presentation, but listened to our better judgement and went with the more established product.  After buying the product, the cost would end up being $1000 extra per month per physician (given the terms of the loan we could secure for an $80,000 installation).  We both winced at this, given our short time of independence, but then my partner boiled it down very simply:

• How much do we earn on average per patient visit? We shot low, and said $50 per visit.
• How many days do we work each month? Both of us worked 20 days per month at that time.
• How many extra patients would we each have to see to pay the $1000 monthly loan payment? One extra patient per day would easily cover our expense.

One patient per day?  That’s all??  It made the decision quite easy, and it made the ROI quite easy to grasp.  Our goal was to use the EMR in such a way that it would improve efficiency (something we had seen in my brother-in-law’s practice) and focus on other benefits of EMR once we had it paying for itself.  We reached that goal easily within the first 6 months of using our EMR, and exceeded it soon thereafter. Neither of us saw ourselves as slaves to the EMR, we saw the EMR as a tool.  Consequently, we found our own means of accomplishing our goals, using the EMR in ways that other users hadn’t considered.

• We didn’t care about being paperless, the goal was efficiency and quality of care, not saving trees.
• We didn’t like the standard templates supplied by the EMR vendor, so we made our own.
• Whenever I became frustrated with a process, I talked to my partner and then changed the template to fix the process.  I soon became an expert at template development, gaining prominence among users of our product.
• When the process inefficiency was not template-driven, such as the use of nurses, the process of answering phone calls, or other common situations encountered in our office, we talked with our office manager and staff and came up with a solution.  Our EMR gave us a bunch of options for solutions we would have not had without computers.
• We quickly realized that fixing too many things at once created trouble.  I adopted the philosophy: “a good idea at the wrong time is a bad idea.”  So we worked to prioritize problems in terms of their seriousness and how easy the solution was.
• Once we had an efficient workflow, we realized there were incredible gains to be had from a care-quality standpoint.  We were not paid more for good quality, but our efficient workflow afforded us the opportunity to focus on it nonetheless.  That may seem backwards for non-clinicians, but it is the reality of private practice.  In truth, our quality had already gotten significantly better simply from the improved organization of our records and instant accessibility anywhere, any time.

Forward to 2010, and here is where we stand:

• I see on average 25 patients per day, working 4 days per week.
• We have 5 Physicians and 2 PA’s.  The efficiency of our office has increased with each additional provider, as we haven’t had to increase overhead much at all with each addition.
• We no longer see patients in the hospital (except pediatrics, which is a small number), and we don’t do many in-office labs or other procedures.
• Despite this, our income has been very good – well above the national average for PCP’s.
• On quality measures, our practice has excelled every time we’ve been measured.  We easily qualified for NCQA diabetes certification, and our measures for prevention are impressive – with colon cancer screening, childhood immunizations, adult immunizations, and cholesterol screening far above national averages.
• Most importantly, I give my patients the time they need.  I make a point to not rush my visits.  Each visit is given 15 minutes, no matter of the type, but visits that require 30 minutes are given that time (which is usually offset by the 5 minute sinus or ear infection visit).

That is why the arguments against EMR ring hollow to me.  I see it like the arguments people give against exercise:

“I don’t have enough time to devote to exercise.”

“I hurt after I exercise, and basically feel lousy.  I can’t afford to feel that bad.”

“I need my sleep in the mornings and am too tired at night to exercise.  I’m doing OK without it for now.”

Yes, I sympathize with these arguments.  I have made them all myself, and still struggle to exercise regularly.  But anyone who says people are better off not exercising are just plain wrong.