Who's in charge? Part Two

Who's in charge when I don't agree with my Doctor or my options?

The easiest answer would be, you are.  You're the person in charge of your own destiny, whether it be medical or otherwise. 

Where to start depends on a lot of other considerations.  Number one is, what exactly are you in disagreement about?  If it's an opinion regarding specific care or treatment, it can usually be resolved by getting other opinions.   Also, doing research on the success and failure rates for a particular treatment may help convince those with opposing opinions.

If you still can't resolve the issues, then I'd consider checking into support groups.  A lot of patients become a part of these support groups because they've stood in your shoes, filled with the same confusion and mistrust.  That no one can understand what it's like from your prospective.  But, you'd be wrong.  There are lots of people whose life story so eerily resembles your own, you'd be shocked that it's not your own.

Try not to wage a personal campaign against your Doctor.  Even in this day and era, there are still many things Doctor's don't fully understand.

In my own personal experience, I've had to explain my medical condition, it's symptoms, effects, and standard treatments so often that I find it strange when I don't have to.  My PCP didn't quite understand the complications and intricacies of my pain condition.  It's a very complex and complicated disease, affecting each person a bit differently, although most symptoms are similar.

For instance, my condition make me very susceptible to changes in the barometric pressure.  Increases cause my skin to feel as though I'm in a vise grip; like wearing a wetsuit that's 5 sizes too small!  Decreases cause my skin to feel too loose.  As though I'm melting into a puddle.  Either way, they make the pain of my condition overwhelming, yet there is nothing that can be done to treat it.

My biggest frustration was getting my PCP to understand that this affected so much more in my life.  More pain means less ability to move and reduced desire to do anything, including basic care.  I don't like taking pain medications, and I try to limit them to the minimum needed to get me through the day.  I don't want to become another statistical pain patient that becomes a drug addict.  I know that sounds harsh, but it is too often too true.  Abuse of pain killers is becoming the fastest addictive substance out there.  But that's for another blog.  I don't want to become one of those statistics, so I limit my pain medications.  I try to minimize my medications as best I can, but there are some days I can't fight the good fight.  This is where the PCP and I come to a great divide of opinions.

That is, until five (5) years later, when he was diagnosed with the exact same condition as mine.  Now he has an entirely different opinion about how I choose to control my pain.

Of course, we can't all be that fortunate.  It's not very likely your Doctor will suddenly understand you or your disease fully, or experience your life as you live it from one day to the next.  Nor is it likely you'll have my luck and find a Doctor with your exact condition to treat you.

There are Doctors who specialize in care for specific conditions.  A quick search on the Internet will guide you toward them.  But sometimes it's not possible to get to a Doctor who specializes in the particular field you need.  So, spend time talking with your contacts from the support groups.  Print out articles that you find for your Doctor.  Help to educate them as best you can.

Also, you can contact your Insurance Company and/or Physician's Group for referrals to other Doctors, Specialists, etc., to help manage your condition.  Additionally, there is always the health care advocacy groups.  They ask lots of questions and delve deep into your health records, but they can be very knowledgeable and helpful.

The best course of action may be just to change your PCP or Doctor.  But, you're very likely to find yourself in the same predicament.  My experience has often shown that you can learn more with a clear mind and a calm demeanor.  Try to understand why your Doctor wants you to follow a particular path of treatment or care.  Try placing yourself into their care and give their opinions and suggestions at least a minimal try.   Then, at least they can't say you are continually uncooperative or uninterested in any type of care or treatment.

Who knows, maybe they know something you don't, or hadn't considered.  Maybe they prefer you to start out slowly with baby steps and see how well you respond to the least invasive treatments, first.  Then they can gradually up the ante and move you toward more aggressive treatments.   This isn't necessarily a bad thing.  And while I know it seems like mostly wasted time.  I have discovered that Doctors can glean a lot of useful information from treatments that don't work, as well as those that do.  Perhaps, sometimes, even more from failures. 

It's the same with life.  You can't learn anything by being right all the time.  And so it is with health care.  A great deal of trial and error.  Sometimes the long way around may be what's best for you in the end.

But, only you can decide that for yourself.  You need to talk with your Doctor.  Make them understand your concerns and reservations.  Talk to them about your planned approach for care and treatment.  It's very possible that you can reach some sort of compromise that honors both opinions and covers an even broader spectrum of treatments and care.  Until you can be reasonable and speak plainly with information and research to back you up, then you're probably wasting both your time and efforts. 

Become as knowledgeable about your disease and/or illness as possible.  Education is vital to understanding what step comes next.  Until you're there, put your trust in your Doctor's care.  That is until they give you reason to not trust them.

When you have concerns or just don't understand, or are afraid --  talk to your Doctor!  Let them know all the things that bother you, that concern or worry you.  Because until you do, they are in the dark and without communication you're doomed to be frustrated and unhappy with any and all care you receive.   Communication with any Doctor about even the smallest concern can make a huge difference in your overall care.  But, until you voice them, the Doctor has no idea you're concerned or just worried.

So, find someone you feel comfortable with.  Try to follow their advice, but most importantly, talk to them about everything regarding your concerns and opinions.  Let them know how you feel about their suggested treatments, your worries, and options you'd like to consider.  Remember, letting them and yourself become a team will be the best form of treatment you'll ever receive!

Who's in Charge? Part One

Who's in charge is a very loaded question, and one that would take an entire lifetime to fully answer, especially as it pertains to health care.  So,  I decided to touch on the top five (5) questions I usually get about "who's in charge?"

1. Who's in charge when I need help and answers, but I can't get them?
2. Who's in charge when I don't agree with my Doctor or my options?
3. Who's in charge when I have a legitimate complaint that's being ignored?
4. Who's in charge when I'm being billed incorrectly?
5. Who's in charge when I get denied?

We'll start with number one (1) this week, and follow with a series over the next 4 weeks answering as best I can all five (5) important questions.

Who's in charge when I need help and answers, but can't get them?

First, I'd start at the source.  Ask your Doctor.  Tell him/her what it is that you need help or answers to?  I've found most Doctors to be very intelligent, patient, and full of unexpected guidance when looking for answers.  Remember, most Doctors have heard and seen just about everything.  Plus, contrary to popular belief, they are human and do experience problems very similar to our own.  If the Doctor doesn't have the answers themselves, I wouldn't be surprised if they at least didn't offer sound advice as to how to find the answers you seek.  If not, keep your head up, there are several more places for answers, depending on the specific question.  Let's assume that you need answers regarding specific medical treatment.  Well, then your PCP should be a wealth of information, or they should have some idea about who would.  Let's say they recommend that you consult with a Specialist.  This is a good start, but don't get too overconfident.  Specialists are like opinions, and believe me, they each have their own, unshakable opinion about what is and isn't the perfect thing for you!   So, you meet with a Specialist, and they either give you the answers you want, or they add to the confusion, giving you more questions than answers.  Shake it off and return to your PCP for another referral to a different Specialist.  Explain why you felt that you and the Special you saw, seemed to have differing opinions, and you would prefer an alternate opinion before deciding  what to do.  Be determined.  You are entitled to secondary opinions, especially when it involves any type of surgery or invasive treatment.  You can also, while you're waiting to see this second Specialist, use the Internet to do some research.  You should have formed some specific questions by now, after consulting with two different Doctors on the subject.  Look for websites that are technical in terms about your specific situation or condition.   But, also search for support groups having any relationship with your specific condition.  These are average people from around the globe who have had or are dealing with the same problems you're facing.  They sometimes can be your greatest resource guide.  A lot of times, these people have stood exactly in your shoes, with lots of questions, and very few answers that aren't technical and unsympathetic toward your plight.  These people understand that you not only need answers, you need reassurance that you're not alone.  That there are others who've been where you are now and somehow they got though all of it. 

Now while I strongly recommend listening to the advice and experiences of others, especially if they have or they are experiencing the same issues you're trying to deal with yourself.  However, please use caution before wholeheartedly heeding someone else's advice, alone.  This is the same as only looking at one side of a coin.  There may be something vital and important on the other side.  I would take the advice given as a starting point.   Use their previous experiences and failures to guide you in the direction that's right for you, personally.  This way, combined with your technical research, you can go see the second Specialist with a better understanding of what lies ahead.  And, can now formulate questions of what's still bothering you.

If however, after all this, you are still unsure or can't get the answers you need.  Then I would begin contacting other resources.  For instance, maybe after all your research and talking with the Doctors, you've come to a conclusion on which treatment, etc., to pursue, however, you still have questions about where to go?, which Doctor to use?, how much will you have to payout of your own pocket?,  Will you stay at the hospital or will this be outpatient care?, or What about after care and/or physical therapy?

These questions should be directed to the insurance company and/or the physician's group.  Both phone numbers for customer care or service should be listed on the reverse side of your insurance card.  If not, they PCP's office staff can find the phone numbers for you.  Just ask. 

When contacting either the insurance company and/or the physician's group, ask for customer service, or a benefit coordinator.  Tell them you need a specialist for an explanation of your benefits.  They should be able to answer all your questions or direct you to whomever can.  Keep asking any and all questions until you are satisfied.   Even if that means several calls over several days.  It's better to know the answers up front, rather than be shocked with the bills arrive.  Additionally, the Insurance company and/or Physician's group may require you to have certain tests and/or other treatments before you can proceed with surgeries or more expensive treatments, etc.  They may also request recommendations from several Doctors and send you to see more Specialists for testing and opinions.  Try to relax, and understand this is part of the process.  However, don't allow yourself to be treated without care or concern for your condition or well being.  If you are in pain and all the poking and prodding makes it worse, then demand to be given medication to help you cope and control your pain.  If you feel no one is listening, then by all means stop them and make them listen.

If you still feel you're not being treated fairly or with respect or concern, then I would contact the local health care advocacy group.  They are usually local by city or state and are part of a government run oversight.  However, they do a lot of good.  Generally, they are staffed by knowledgeable volunteers and others paid for their expertise.  They can be a wealth of information and help.  Just keep in mind, they are partly government run and therefore not always easy to get through to on the first few tries, and they do require lots of information from you before they'll proceed in assisting you.  They may also have their own suggestions as to how to deal with your situation  -- and I mean writing letters!, more specifically.  So, call them, but be prepared for lots of advice, phone numbers, local support groups, other advocacy centers, addresses, etc.

Another place to contact, if you're truly still desperate for answers is the Dept. of Corporations, Health care division.  They deal with HMO's, PPO's, and other health insurance groups.  They take their time responding, and generally you'll be required to put your complaint or problem in writing from beginning to present.

Also, if you are covered by Medicare, or a Medicare provided insurance, then you can also contact them for general assistance, however, they will most likely refer you back to the Insurance company or Physician's group or another advocacy group.  But, again they may have some helpful information.

In any case, asking questions can only be helpful.  There are no stupid questions and every one's entitled to know the full story, especially when it pertains to your own body and the care of that body.  You cannot make an informed decision or consent without being first fully informed to your own satisfaction.  Do not allow the Doctors, the Insurance companies, etc., to bully you into making decisions without understanding why.  While I realize some situations warrant urgency, I still believe you can be fully informed within a matter of minutes when one so chooses to do so.  I've been in several urgent situations where I've had to make a choice with very little understanding.  But, as I've also learned, if you continue to ask questions and voice your real concerns, most Doctors and staff do feel compelled to answer them as best they can.  Unfortunately, only you can determine when you know enough to make an informed and educated choice.  So, until you're there, stick to your guns and get those answers!

How Sick?

                                                                      Prologue

Please remember the following entry is the personal opinion of the writer.  No medical advice should be construed as fact.  Always follow professional medical advice when seeking medical attention.  The writer has no medical training or expertise, other than their own personal experiences as a patient.  You should always consult trained and accredited medical personnel for any and all medical situations.

                                                                     How Sick?

Of course, the age old question in dealing with Doctor, etc., is just simply how sick am I, and when does it warrant further investigation?  I don't know about everyone else, so we'll use my barometer to measure:

• 
  
   If you're too sick to go to work, school, etc., you're probably sick enough to stay home and in bed.
• 
  
    If, however, you're running a high temperature, have nausea, diarrhea, or a blinding headache, then you should at the very least consider going to see your Primary Care Physician.                                  
• 
  
  If you feel too sick to drive, or make any decisions, I'd recommend an Urgent Care facility.
• 
  
  If you can't make heads or tails about what to do, I'd consider visiting the Emergency Room.

Now, I realize these are oversimplified instances and each person should determine their own comfort level when seeking medical treatment, but a lot of the time, things aren't quite so easy to decide.

Usually for myself, if I can make sound choices about my care, then I keep to my home or see my PCP. Especially if "it" doesn't seem to want to leave.  If, however, I start wondering aloud and not making much sense, then I tend to believe I'm a lot sicker than I'd realized.  That's when I consider the Urgent Care facility. 

Not always, but occasionally, I've gone to see the PCP and have been sent on to the Urgent Care or Emergency Room.  But mostly, I try to keep my choices clear and direct.  If something seems broken, such as an arm or toe, or if I need stitches for a deep cut --- those are obvious Urgent Care visits.  But, if I also hit my head, plus I believe I've broken a bone, well then I'm headed straight to the Emergency Room asap!

These are basics.  Everyone has their point of a slip -up vs a disaster.   The really difficult test comes when you're not sure what's happening!  For instance:  you have an upset stomach with a little pain.  Now what?   Well, first, I'd call the PCP's office and ask them what they'd recommend.  Unfortunately, as we've already discovered and discussed, a great many times your attempts to call a PCP go unheeded or ignored altogether. 

If it's something completely new, and doesn't appear to have any reasons for it, I'd at least go to an Urgent Care facility.  It may waste a great deal of time, but you never know when it could be serious.  If you can't decide, a bit of waiting and some Internet research may be very helpful.  Who knows, maybe the potato salad didn't agree with you today, or after the third day in a row.  Or, it could be the virus plaguing all your co-workers.

The truth is you'll never know all the right choices ahead of time.  Only in hindsight can we make error free choices.   So, what to do?  Ask yourself some basic questions, and be honest!:

1. 
   
   Does it hurt bad enough to warrant being poked and prodded?
2. 
   
   Is this worse than anything you've ever had before?
3. 
   
   Does this seem different from the countless times you've been sick before?
4. 
   
   Do you feel you need a Doctor's opinion?
5. 
   
   Are you worried or overly concerned about how you feel?
6. 
   
   Does your spouse, significant other, or friends feel you should see medical attention?
7. 
   
   If someone else had the exact same symptoms, what would you advise them to do?
8. 
   
   Are you only putting off a visit to the Urgent Care facility or Emergency Room or PCP's office, because of the amount of time you'd be waiting?
9. 
   
   What's the worst that could happen if you go see a Doctor?
10. 
    
    What's the worst that could happen if you don't go see a Doctor?
11. 
    
    Can you tolerate the symptoms comfortably until tomorrow, or when you can get an appointment with your PCP?
12. 
    
    Is there anything you can do to relieve or alleviate your symptoms right now?

If you answered all these questions truthfully and honestly, and without any guilt, then you should have a pretty good idea about what to do.  I find, for the most part, common sense, and knowing yourself well, is the best barometer in determining when something needs further attention.  If you're truly uncertain, then a dose of caution is usually the best course of action.

Just remember, your health is a life and death matter!  No amount of joking or glossing it over can change that one fact.  So, keep that in mind the next time you wonder whether you're wasting every one's time and efforts.  Even the smallest molehill can become a mountain, left to it's own devices!  Besides, just consider it as a small repayment towards all the hours you've wasted waiting for the Doctor to get around to you.

Is anybody listening?

Another truly irritating fact in dealing with health care is everyone talking, having their own opinions, while nobody seems to be listening to what anyone else is saying.  Is anybody truly listening?

Take for instance the case of my family member --  They scheduled an appointment to discuss with the Doctor that they were finally willing to have the recommended surgery form the previous year.  The request came with another hopeful scheduling request, so that a visiting family member could be there to help out during recovery.  The response to that request wasn't met with to much enthusiasm.  Stating that 2-3 weeks was impossible!  Now the most ironic thing is that the appointment took almost 5 weeks to schedule, which would have given them sufficient time to perform all pre-operation tests, plus the operation.   Here is where the rubber and road meet to no effect.   Now the next step as required by the doctor, is to have an MRI scheduled and done before any thought of surgery could be considered.  So, paperwork was sent to the insurance company for authorization.  It was processed and approved by May 18th; sent to the patient on May 22nd; and received by the patient on May 26th.  With the holiday weekend looming, the patient waited until the following week to call for an appointment.  When they did call the approved testing facility, they were told it could not be scheduled as they had not received the instructions from the Primary Care Physician's office. 

After six (6) phone calls to five (5) different people:  the doctor's assistant, the referral dept. clerk, the scheduling clerk (all at the PCP's office) and  the MRI scheduling clerk and office manager (at the MRI facility), I was only able to leave six (6) separate messages regarding this situation.  This is a typical problem where someone dropped the ball in doing their paperwork, creating a log-jam for everyone else.  But the real travesty is when you're trying to get it corrected or dealt with, and they don't listen.

Trying to find the right person, department, and/or the right placed to call for help seems daunting.   But, help is out there, it just takes a lot of working the phones, asking questions, and not giving up!

In the particular case described, the representatives from the Doctor's office, instead of listening to what the problem actually is, quickly take offense toward the patient and them pointing out that they haven't done their job properly. I personally don't care whose right, wrong or purple --  just fix the problem, please!  Additionally, the MRI facility could have just as easily made the appointment and called the PCP's office for the needed information, themselves.  Not only were they not listening, they were stating very clearly that is was not their job.  How petty we've become when dealing with health care.

The simple truth is there isn't enough time to get your point across when you're at the doctor's office, and when you're not, you can't get anyone to talk to you.  Most questions and problems could be very easily dealt with if the parties involved would just check their personalities and insecurities at the door.  Most people don't try to point out other's faults.  It's impolite and ill mannered.  The majority of us don't care enough to correct a stranger, so why should we care to point out anything?  The truth is they just want to get from point A to point B with as little problem as possible.  Unfortunately, the insurance company and Doctor's groups say the PCP has to be involved along every step of the way.  So, until they say it's OK for you to go to point B, you're stuck waiting at point A.

So, what to do?  Keep calling.  Keep talking.  Keep trying to get your point across to the Doctor's staff.  Eventually you'll get somewhere.  Even if it just because they're tired of hearing from you.  In any case, in my particular situation, the log became very quickly unjammed when I suggested  to the MRI scheduling clerk that they try to contact the PCP, as I obviously was not getting any results from my attempts to get the situation corrected.  (There is more than one way to skin a cat..)  Within 20 minutes, I not only had an appointment scheduled, but scheduled for the following day!  Plus receiving a phone call from the Doctor/PCP's office to verify that all was well and taken care of.

It's just that simple.  All it takes is one person to listen to the problem and react with proper action, to make all the problems disappear!  Just think how much simpler our lives would be if everyone stopped long enough to listen to the problem at hand and just fix it!