The Patient Speaks!

In September of 2005, WALL STREET JOURNAL editor Laura Landro wrote in her column “The Informed Patient” an article entitled “Teaching Doctors How to Interview”.  The article related how some doctors are being trained in the “Four Habits of Highly Effective Doctors” model in how to quickly and accurately get to a patients real medical issues.  There are doctors who feel stressed and frustrated when attempting to diagnose patients as the information the patient gives is not always easy to “translate”.  Because of this difficulty, sometimes unnecessary or premature testing is performed which is in no ones interest and an aura of distrust may emerge.  All of this plays in to exactly what I’ve been preaching in these pages for years. The PATIENT should be the most informed person in the room during the first couple of visits.  After all, it’s the PATIENT who is suffering and the doctor must make a decision based upon what the PATIENT tells him/her.

OK, I’ll stop yelling now.  I have literally had conversations with friends who complain about an ache or pain but, when asked, can not give the slightest clue to help.

Example:

Them:  Hey, Rich.  I’m really dying here.  Can’t stand it.

Me:  So what’s wrong?  Where does it hurt?

Them:  I don’t know.  It’s killing me.

Me:  You said that.  But where, exactly, does it hurt?

Them:  In my head, I think.

Me:     You “think”?

Them:  Yeah, my head, kind of.  I dunno.

Me:  And what did you do about it?

Them:  I went to the doctor, but that idiot didn’t do anything.  Said he didn’t know what my problem was.

Me:  And you told the doctor exactly what you just told me?

Them:  Yeah.

Me: And you don’t understand why the doctor couldn’t do anything?

Them:  I knew I wouldn’t get any sympathy from you.  All I wanted were some pills, or something.

Me: Uh-huh.  (Secretly rolling my eyes)

Before some of you start rolling your eyes at me, I fully understand there are some medical symptoms which can best be described as “vague”.  But simple answers like “My head hurts” or whatever shouldn’t be too hard to determine. After all, you are the one with the medical complaint.  Assuming your visit is not an emergency, take a couple of moments to jot down your symptoms as they occur, as well as any questions you think of.  Be as specific as you can.  If it’s your right arm that hurts, say it’s your right arm, not simply “my arm hurts”.  Bring your medication/allergy sheet with you so the doc has an accurate, up to date listing of all your issues.  The average doctor visit is not social time, stick to the issue.  Remember how annoyed you were because you sat in the office for two hours PAST your appointment time?  Maybe some of that was because the doctor was trying to figure out my friends ailment because my friend was not prepared.  If you have the luxury of a doctor who really spaces out appointments so you can chat – lucky you!  I think I’ll e-mail Ms. Landro and see if she’d be willing to write an article entitled “Teaching PATIENTS How to Interview”.

A funny thing happened to me on the way to surgery.  How’s that for an opening?  A few weeks ago I required surgery that necessitated general anesthesia.  While I’ve had “conscious sedation” before, I’ve never been put completely under.  The prospect didn’t bother me a bit as I definitely did not want to be awake whilst the surgeon was poking and prodding me with razor sharp instruments!  But I digress….

Before surgery, I had to meet with the anesthesiologist to discuss what medications I can and/or can not tolerate.  As I’ve previously reported, I encourage the use of, and actually use it myself, a personalized patient medication sheet that lists all the meds I am currently taking, why I take them, who the prescribing doctor is and which pharmacy fills which prescription.  In my case, I have two pharmacies.  One is mail-in through my insurance company for long term meds.  The other is my local pharmacy for spur of the moment issues like antibiotics, etc.  Additionally, I have all of my known allergies listed.  As the doctor was reading my sheet, I asked what med would be used to put me under and what med(s) would be used for pain.  He was very impressed with my complete med history as it significantly impacted his decisions on what he would give me, and more importantly what he would not.  Since I take a daily, long-acting opioid for my migraine, the amount of opioid in my system had to be taken in to consideration as well.  This particular hospital’s drug of choice for severe pain is fentanyl, but since I had that I am severely allergic to fentanyl in big red letters on my med sheet, the doctor was able to plan for and discuss alternatives before the surgery instead of making decisions on the fly.  I found that both nurses and doctors took a great deal of time familiarizing themselves with my sheet so no known allergic issues or over-medication would happen.  The end result: my experience was extremely positive.  I was properly medicated and experienced no side effects what-so-ever.  It was reiterated to me several times that they – doctors and nurses – wished more patients would take the time to accurately list the information as it made their job easier too.  So, I again encourage you to make the list and provide a new copy – even if it’s the exact same info – at every doctor’s office visit or medical “event”.  The last word you ever want to here while you’re in surgery or the Emergency Room is “Oops”!

My goodness!  We are on a roll.  Another great article addressing the belief there is an undertreatment of pain.  And once again, AARP – The Magazine is the publisher.  Found in the September/October 2005 issue, Health Report by Barry Yeoman, “Prisoners of Pain” I’ve listed quotes that stood out to me.

“Why are millions of suffering Americans being denied the prescription drug relief they need?”

“Each time, she mentioned the pain.  Each time, the doctor deftly changed the subject.  Each time, she left in pain.”

“…he doesn’t want to treat your pain because the treatment that works is opioids, and he’s afraid to prescribe them.”

“An estimated 75 million Americans suffer from chronic  pain…”

“Undertreatment runs as high as 50 percent among advanced-stage cancer patients and 85 percent among older Americans living in long-term facilities.”

“Much of this suffering is preventable.  Experts do know how to reduce pain safely.”

“Many harbor the false impression that opioids frequently lead to addiction…”

“…some physicians fear that if they deliver humane pain care, they’ll face prosecution by the Drug Enforcement Administration…”

“…physicians…say…I’m going to stop writing (opioid) prescriptions because I don’t want the DEA coming into my office and putting handcuffs on me…”

I could go on and on, but you get the point.  For the full text, I encourage you to get a copy of the magazine and read it.  This applies to all pain sufferers, not just us “over 50’s”!

In past articles, I’ve addressed many of the issues presented here.  Having gone through, in my own humble opinion, years of undertreatment for pain, I know first hand what a personal crisis this is.  Fortunately for me, I found a doctor who understood the issue, actually listened to me – the pain patient – and made the determination my daily migraine could not be treated solely with non-pain medications.  As I’ve said before, long-acting opioids gave me, and my family, my life back.  I am in no way pain-free, however I have been able to function as a husband (of 34 years), a father (of four) and a productive employee (retired after 30 years).

Talk to your doctor(s), talk to the regulators, talk to your congressmen/women, continue to educate yourself.  Read, surf the internet, go to the library.  Do what is necessary to provide relief for yourself so you can become, or continue to be a functioning human being.  Because a bureaucrat says “No” to an accepted, scientifically proven treatment that can be your salvation is inexcusable.  Get active about your own treatment.  Education is the most valuable tool we have.

While settled in my “reading chair” a couple of days ago, drinking my morning coffee and reading the newspaper, the following headline caught my eye: “Pain Management’s Dismal State”. (Wall Street Journal, Health, The Informed Patient/By Laura Landro, Wednesday July 13, 2005) Funny, I thought, as my own personal pain levels were in an elevated state due to the barometric pressure of late. I’ve been supplementing my daily pain medication for the past few weeks as the heat, mugginess and thunderstorms have reeked havoc on my migraine. Supplementing with my doctor’s OK, I might add. My interest was double-piqued as I’ve always enjoyed Ms. Landro’s “Finicky Traveler” columns as she writes about hotels she and her husband have encountered over the years. What could the Finicky Traveler possibly have to say about the pain in my head?

“There are very few doctors who understand pain management or really know what an ordeal chronic pain can be for patients” she quotes a pain sufferer as saying. Further, the Executive Director of the Chronic Pain Association is quoted “There is a real lack of understanding, knowledge and awareness of the issues of pain”. Sound familiar? Have you personally said this or at least thought it? The article points out another truth we in the chronic pain world already know. Some doctors worry about the legal risks involved in prescribing pain medications which implies they are reluctant or even refuse to prescribe them. Plus some pharmacists refuse to honor certain prescriptions for their own ethical reasons, something I personally have experience with. How many of us have gone to an Emergency Room in full “puke mode” simply to be glared at and turned away with only an aspirin and a $200.00 bill?

In paragraph five is a statement many of us already realize and I’ve chatted about on this website before: “…Though most chronic pain can be managed or greatly eased, it remains one of the most poorly understood and improperly treated conditions in the U.S.”. Meaning we all – sufferers, patients, doctors, researchers, pharmacists, government agencies, etc. – must never stop educating ourselves and searching out answers.

So, is it all bad news? Or is there a bright light on the horizon? Fortunately, there is good news. The National Pain Care Policy Act is back on the front burner. See:
http://olpa.od.nih.gov/legislation/109/pendinglegislation/paincare.asp for more information. When you click to the Link, you’ll see that the great Albert Schweitzer stated that pain is more to deal with than death! There are organized pain lobbies, plus individuals like you and me becoming more vocal about getting proper pain management. As we become more educated in our malady, many of us make a conscious decision to make due with any side-effects of the meds we take. Indeed, early in my migraine travels I was offered, on two separate occasions, permanent disability. However, through perseverance and the love and understanding of a great wife and our four children, I found a doctor who worked with me to find the proper pain management regimen so I could remain a productive member of society, a husband and father.

To see our plight validated by a respected world-wide news outlet is great news indeed. We must continue to educate ourselves so we can construct a positive environment for appropriate pain management. Read, study, scour the internet, the bookstores, the library, talk with your doctors and government regulators, speak with your significant other plus family and get involved. After all, the only thing we have to lose is pain.