Some years back, the phrase "Managing your boss" become popular in the corporate world.  The idea was that even though your boss is your manager, indirectly, you can control your work environment and success by understanding your boss' personality and style and using it to your advantage.  At the time, I didn't pay much attention to this concept, but after enduring much more contact with the medical community than I would like, I believe there is a place for a similar concept in the patient-doctor relationship.

Dealing with the health care system (in the US) is not always easy for people with a chronic disease.  Medicine has become more reliant on technology and less humanistic in its approach, the move towards HMO's seems to have failed, and rising costs are threatening to cripple the system.  Combine this with a lack of knowledge about CM/SM among many doctors and the CM/SM patient is often faced with a daunting task when trying to get a proper diagnosis and effective treatment.  While dealing with the medical community can oftentimes seem overwhelming, I strongly believe that a person should take as much responsibility as possible for their own health care and not completely abdicate this role to doctors.  It would be great if we could change the system - and we should certainly try - but we should also recognize the reality and learn to work within the system to get what we need.  So the question becomes, given the realities of our health care system and given a desire to be an 'active' patient within that system, how does one make the most of the situation?

I believe there are 4 keys to getting the most out of your healthcare:  know your doctor, establish goals before each visit, be a skilled patient, and do whatever you can to find care you are comfortable with.

1. Know Your Doctor - Know the enemy is a military doctrine that goes way back, and while I do not view doctors as the enemy (quite the contrary), the doctrine applies equally as well to this situation.  In order to control any situation, you need to understand the people involved.  Not just a superficial understanding either, but a deep understanding that comes from putting yourself in their shoes, understanding their background and experience, and understanding how they think.  Above all doctors are human, and like every person bring a host of preconceptions and experiences to the table.  Consider the following:

   • The way doctors are trained today, it is their job to heal, not to be compassionate.  They think deductively to identify a problem and fix it.  At the same time, at the end of their extensive training, subconsciously  - and necessarily - they are extremely confident in themselves and their abilities.  This creates two problems in some doctors.  First, many doctors aren't interested or even capable of dealing with their patients as a whole person.  They focus on a narrowly defined, fixable problem.  If a patient's family is falling apart because of an illness, the stress at home will likely aggravate his or her symptoms.  Yet when the patient reports worsening symptoms to the doctor, the doctor doesn't see a 'medical' reason for the worsening symptoms and the patient's point of view is dismissed, thus souring the patient-doctor relationship.  The second issue is when a doctor encounters a problem he or she can't identify or fix.  There are many doctors who do not handle this situation well; "I operated on you, the MRI looks good, you should feel better" is the thought process.  Consciously, or subconsciously, the doctor ends up blaming the patient for not getting better with the first treatment.  This again sours the relationship.

   • Medicine is becoming more and more reliant on technology to make diagnoses.  As this reliance grows, doctors are losing their skill at talking with patients.  It is much easier to look at blood work or an image than it is to listen to a patient complain about every ache and pain (I actually saw one doctor who sat with his back to me!).  A test is objective; by definition a patient's report of symptoms is subjective.  This is especially true with pain.  Pain is purely subjective and can be very difficult to describe.  Unless a doctor has personally experienced some type of severe, acute, or chronic pain, he probably doesn't have the context to really understand what a patient is reporting.  At the same time, most patients have a strong need to connect with their doctor on a human level.  After all, a patient has to place a great deal of trust in a doctor.  This imbalance can leave patients feeling unvalidated and disappointed with their care.

   • Many doctors are under enormous financial, regulatory, and time pressure.  Medicare reductions, soaring malpractice premiums, and insurance paperwork have put a large burden on doctors.  Doctors are forced to spend more time and energy thinking about their business and have less time and energy to focus on their patients.

   • The internet has fundamentally changed the patient-doctor relationship.  While the wealth of readily available information has been a boon to patients, doctors have had to adjust to patients who want to speak the medical jargon and discuss the latest research.  To be fair, it is easy to jump to conclusions based on something off the internet and a patient may go into an appointment with their mind closed and unwilling to listen.  Naturally, some doctors handle this better than others.  Some are willing to have a real discussion with patients and some probably feel threatened by the amount of information available.

   Doctors are individuals.  Some got into medicine to save the world, some for the scientific challenge, and some for the prestige.  Some will rely only on tests and some will listen to their patients.  Some will be empathetic and some will end up saying very callous things.  Some will be willing to engage in a discussion with their patients and some will have an 'I'm the doctor' attitude.  This is a fact.  It is up to us, as patients, to identify what type of person/doctor we are dealing with in order to develop a proper strategy for managing our own care.
    

2. Establish Goals For Each Visit - It is important to remember that you as a patient have much more time to think about your situation than your doctor does.  Chances are he or she will begin to think about your case 30 seconds before knocking on the door as your file is being reviewed.  You, on the other hand, have the luxury of thinking about the doctor's visit for days in advance.  As patients, we should use this time wisely and decide on one - or two at the most - goals for the upcoming visit.  Do you want to try a different medicine?  Adjust the dose?  Bring up a new symptom?  Ask a question about your MRI?  Whatever the goal is, keep focused on it during the visit.  This is not an easy thing to do.  Doctor's visits can go off in many different directions, but no matter what path the visit takes, if you have one goal in mind, you can always return to it at the end of the visit.

3. Be A Skilled Patient - What is a skilled patient?  Clearly the doctor is in control during a patient-doctor encounter, but there are ways to manage the visit to ensure a positive outcome.  Like any skill, getting what you want from healthcare takes practice and patience.  Lucky - or unlucky - for us, most of us will have a lot of opportunities to practice:

   • Choose a strategy - Since you understand how your doctor thinks, now you can choose a strategy that will maximize your interactions with him.  If he relies on tests, don't waste time talking about your symptoms and focus on the tests.  If you think the tests aren't telling the whole story, ask about the limitations of the test or complementary tests.  Play into what the doctor feels comfortable talking about.  Some doctors respond well to direct patient requests.  If that's not the case, try leading the doctor subtly into certain subjects.  Is your doctor open to you bringing up recent research and asking scientific questions?  If so, use the internet to your advantage, but keep in mind the training and experience your doctor has.

   • Stay focused - Most doctors - particularly surgeons - have to see many, many patients a day.  Don't clutter up the visit with irrelevant information.  Think about what you want to say and how your are going to say it ahead of time, so the information comes out in a way that is easy to understand.  If you want to talk about symptoms, remember not every little ache and pain is tied to the same thing. 

   • Don't look for validation where it isn't - If you have a compassionate doctor that validates your feelings, you are lucky.  But if you don't, it doesn't mean the doctor can't help you.  If your doctor doesn't provide the validation you need, look for it elsewhere - from family, friends, or most likely, from other people with the condition.  I have an excellent neurosurgeon and I am very confident in his abilities.  But at the same time, I know he relies mostly on the MRI and his own observations and doesn't really want to hear about the lingering symptoms I may have.  Why?  Because they're not bad enough for surgery, so I just need to deal with them.  It doesn't matter to me, he can still monitor my condition and take corrective action if necessary.

   • Stay in control - One of the key points in the hugely popular book, "The Seven Habits of Highly Effective People", is that you can't control how someone acts, but you can control how you react.  Chances are high that when dealing with doctors over a period of time, a doctor will say or do something that will be very aggravating and frustrating.  This doesn't have to ruin the situation.  You can control how you respond to this.  Think about your doctor's perspective, think about your emotional state, and remember they are people just like everyone else.  It is a fact that you will get more out of your healthcare by checking your emotions at the door; that is simply the way it is.  Obviously, this is not always easy to do.  A few years back, I saw a very well known orthopedic surgeon about continuing problems with my shoulder.  I didn't like him from moment one; he was loud and cocky and we got into an argument over how to pronounce syringomyelia.  At the time he told me surgery on my shoulder had a very low chance of success, but because I allowed myself to react to his manner, I ignored his medical opinion.  Three shoulder surgeries later, it occurred to me he may have been right.

4. Find Care You Are Comfortable With - I am a strong believer in getting second, third, and fourth opinions.  While medicine is a science, it never ceases to amaze me how differently doctors will approach the same situation.  If at all possible, shop around and find care you are comfortable with.  I realize this is not possible for many people due to insurance restrictions, etc.  I receive a couple of notes each week from people who are stuck with a doctor they aren't comfortable with and this breaks my heart.  I have discussed the situation with patient organizations and patient advocates, and everyone is aware of the problem.

It is up to us to take responsibility for our own healthcare.  Just as we are responsible for eating right, exercising, and getting enough sleep, we are also responsible for making the best out of our available health care.  It is not always easy, but it beats the alternative.

- Rick Labuda