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What do you want doctors to know?
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What do you want doctors to know?

As I mentioned in another post I have been asked for input from the point of view of a chronic pain patient by the medical director and the CEO of a community health care organization. This comes up because their entire system is straining to deal with the huge amount of time and resources which must be devoted to a group of patients who generate one hundred calls per day asking for early refills and dose changes and their perception that this group of patients is often angry and irrational. It seems that every week a doctor is threatened by someone who wants an opiate prescription or a dose change. A number of doctors have just refused to deal with pain patients. Some see drug seeking behavior in everyone who mentions pain. This has put even more pressure on the most compassionate doctors. I have seen them trying to work their way through sixty charts and phone calls after hours and their spouses insisting that they get home before the kids go to bed once in a while.. I have already tried to explain how difficult chronic pain can be to live with and the trade offs involved in opiate pain relief are difficult and can leave one excessively dependent on their doctor's goodwill to function.. I've talked about the fact that this group is seeing their doctors when they are perhaps not at their best. "How well would you be keeping up your end of this conversation if I was hitting you with a hammer while we were talking?" I have asked. So please, I would appreciate input from anyone who would like to be heard. What would you like me to tell these providers?
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11 Comments Post a Comment
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687049_tn?1272343693
I am sure it is hard for them to decipher between the ones in real pain and the ones seeking drugs.  I know I have been treated like an addict by my PA with rude comments and even a drug test.  I have always been up front with him during my appointment as far as telling him my needs and I have never asked for a refill in between appointments.  One thing my doctor's office does is they will not refill unless you come in for an appointment.  Personally I think it has to do with getting more money out of me but it may show accountability as well.  I am prescribed 3 Norco a day.  Sometimes I need 5 or 6, sometimes I need 0-1.  When I told my PA that I need 5-6 some days he said, "Oh, you're getting addicted!"  I told him, "No, I have an 18 hour day, I work, and I have two babies.  3 pain pills does not last me all day sometimes."  (By the way, I am switching doctors because of this across-the-board attitude.)

There are factors that should be taken into account on a patient by patient basis.  I also think that within the scope of the doctor's judgment, it should not be out of the question to request more medication, but possibly have the pharmacy fax over the refill request instead of dealing with irate patients and post in the office that it may take 48 or 72 hours to respond to a refill request so to make sure they call in the refill to allow enough time until the medication is filled.  One of my old doctors did it this way, and the office staff would get the charts for the patients requests and put them on the desk, then there was time set aside at the end of each day to whip through them.
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356518_tn?1322267242
First of all I would suggest that the office not accept ant calls for medication changes or refills. I have been dealing with PM doctors for over 20 years and not one of the many doctors I have had have ever done this over the phone. This would free up the doctors evening time when he/she is dealing with all of these calls. Also it will benefit the Pt if they are having problems to see the doctor. The doctors are taking to much on.
I am one of those Pt's who desperately appreciates PM doctors and all they do. They take on huge responsibilities and I admire and appreciate that very much. Any Pt who gets on the phone and demands the doctor change their medications should be warned once and then let go. Please understand that I am a CP Pt but I also understand the doctors view points too.
A doctor can not properly change medicines over the phone and should not be asked to in my opinion. Their time is also valuable as ours is. When a Pt calls in the doctor and their staff have enormous paperwork to do and has to notate the Pt's record along with dealing with the issue.
That aside.
Doctors should realize that we do have pain and are not just seeking narcotics.  
We have lives we wish to live and can't do so with the pain levels we have with no medical help.
Narcotics are not the evil thing some doctors make them out to be. There are millions that live productive lives while having their pain controlled with them.
Compassion for what were going through is something I think a lot of doctors lack too.
We have children and jobs and families that depend on us and if were not properly treated they also suffer along with us. We have to still get the kids off to school and cook and clean and work even if were in pain and the medication makes it easier to be able to do these things without suffering.
The doctors should understand too that even with all the testing some chronic pain Pt's will have nothing show up on the test but this does not mean the Pt is not in pain. Do not give up on your Pt's just because the test results don't show something wrong.
We should not have to bow down to the doctor just to get treatment. Some feel we have to do this in order to get the medications we need to function.


Also we as Pt's need to respect the doctors and what they do.
They go to school for many years to help us and we should respect them.
These doctors take on the strict regulations and the DEA to treat us. They risk losing everything so we should be appreciative of our doctors and their efforts.
There have been many doctors even locked up and have lost everything for trying to help their Pt's.
We should not expect our doctors to be at our beck and call. They have many Pt's.
If you need refills or medication changes go in and see him/her.
They have families and lives out outside the office.
Do not call in unless it is an emergency. As I said make an appointment if one needs refills or changes in their pain medications.
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356518_tn?1322267242
No one should ever be offended by a drug test. Some PM doctors require them every month and some are more relaxed. The test protect the doctor as well as the Pt.
If a doctor wishes to do refills on a prescription that is his/her prerogative . There are some medications that require a separate prescription each time and the DEA does now allow PM doctors to write three months in advance. They had stopped doing this for awhile but then reinstated it.
While some doctors do require you to come inn each month there are some that will allow you refills and that will give you three months worth of prescriptions post dated.
The doctors who do not do this wish to see their Pt's every month to see how the Pt is doing and also to protect themselves.
We may see it as a waste of time to go in each month for the same issues and get the same prescriptions it is not really as there may be issues we need to talk to the doctor about and this also protects the doctor and us as well.
As for the money. We do pay each time we go in but look at it this way. The doctor has went to school for years and most likely just paid off student loans so why shouldn't the doctor make money. After all he/she does provide an invaluable service. While they may have went into medicine to help people I am sure they wanted to make a good living too:)
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Avatar_m_tn
My doctor wrote me script for oxycodone with a refill. I was treated like a nuisance and was out of my meds for 3 days trying to clear this up. Sometimes, it is the doctors’ fault.
BTW, I have RSD and that was 3 days of hell. He is finally referring me to a PMD. YAY!
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492898_tn?1222247198
What I think is important for both sides is, that the rules are stated very clearly and up-front in the way of what some call a pain contract. Like, my doctor made these rules very clear and I respect them. She told me that if I lose my pills, or they fall behind the refridgerator, or end up in the wash, or are stolen, then she will not refill them early because of any such reasons but once, and only once.

It also puts some extra responsibility on me, because it should not always be assumed, as is, that I am as a pain patient the only one who messes up, or is perhaps even addicted to 'my' drugs. It may also be a pharmacist or a doctor or a nurse, as addiction really does not discriminate.

When I saw my doctor last, I was to review my medications and it said right behind the pain pills, that patient muxt last 28 days before she can refill. This immediately got my attention as I go out of my way not to ask for refills early. I went through all the med statements from the pharmacy and sure enough, it was clear from those papers, that every couple of months a refill disappeared. i.e there may be 4 refills left and the next time only two. This is just an example and I confronted the pharmacist at my pharmacy that I most trusted and told her one of them was  doing this at my expense and that it really mattered because my doctor now believed I was taking more than I was.

The matter was immediately straightened out and she faxed a letter immediately to my doctor telling that their computer had a glitch and swallowed refills occasionally and that this had happened to me at least three times, etc.

Now, I don't know if this is true but at least this is no longer my problem.

I also think doctors need to know that many patients are naturally very dependent on their medications and not only physiologically but psychologically. They do not like running out; it's scary.

Still and again, those rules should be set and signed and followed and a protection of sorts not only for the doctor but the patient, like good limit setting.

It also should be considered like the previous poster said, that the patient may be in a lot of pain when no diagnosis has been made. This happened to me and I  was in so much pain it was ridiculous, unbearable.

So I had an x-ray and an ultrasound to rule out blood clots and both were negative. So I get this note with a smiley face that I should be so happy that I am not injured or ill after all, and I surely was not.

Finally, finally, the doctor agreed for me to have a bone scan and I told the technician that the worst possible news she could give me is that there is nothing. But there was, a huge lightening bulb abd so this test was followed up by MRI and it turns out that my right femur towards the kneee was dying and little pieces of bone splitting off.

So after a couple of weeks in unbearable pain, suddenly from one second to the next I can have anything I have, even morphine. So I took that morphine stuff for a few weeks , was now able to walk somewhat naturally and then the whole thing went away by itself a couple of weeks later.

Sure, you can never know for sure, well, sometimes you can, but then this is true about everything in like and it may be better  to give a pain patient a chance even if they do get addicted. There are many worse things in life than being dependent on medicine. KAT (not edited) It's a really good question by the way and I too understand the docs frustrations.
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687049_tn?1272343693
Well I am fairly new to all this.  I didn't know that drug tests were "norm."  Also, my PA has me coming in every two weeks.  I would love to go in one a month, but it seems like something or other new symptoms would pop up before I went in there.  Maybe things will change when I get a diagnosis.
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Avatar_m_tn
I very appreciate this input. It looks like I will not only get to pass this on but it is possible that this system will be re-evaluating how they deal with this patient group across the board. It certainly sounds to me like improved protocols for communication could help a lot. I have heard doctors express hostility towards pain patients. Things like "They don't even want to try to work on what's causing their pain. They just want  me to shut up and write them a prescription, but I've been burned too many times." And while posting on the substance abuse forum I've seen a lot of hostility towards doctors, Things like " I begged my doctor to help with my unspecified pain but all he did was get me addicted."  The doctor and the administrator I am talking to are compassionate people who want to try to address both these groups. I am hoping that we can come up with something to help bridge this gap where it exists. So please, if anyone else has input, it will be read by people who have the power to address this for hundreds of patients and dozens of doctors. It's possible that if we come up with ideas that actually help we might even be able to reach a larger audience. Again, thank you for your help.
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547368_tn?1332173665
In my experience all clinics are over loaded with calls, not just PMP. I wonder how many others have worked in a clinical setting. There are solutions to this problem. The trick is finding one that works for the particular clinic.

Does your spouses clinic haves a triage nurse and/or prescription nurse? In my area most clinics, especially the larger ones can even have two or more depending on the needs of the department(s). If they do not I suggest that they add one or two. Having someone to field these calls should cut down on the amount of work the regular nursing staff and physicians are required to handle.

Talking to a "friendly voice" can often help decrease the irate calls. It takes a special kind of nurse to field these call and remain the voice of reason and still convey empathy and concern. No ones calls should go unanwsered or not returned for days regardless of the nature of their call.

It's not all that hard to tell the drug seekers from the legitimate pain patients. Everyone is fooled once in a while but medical providers should not let the exceptions cloud their outlook, judgement and approach with their patients.  When a medical care provider begins to feel like they are doing their patients a "favor" by treating them or prescribing badly needed pain medications they need to get out of the practice. You have to take the good with the bad in any profession.

Burn out is a real issue in our over-worked, under-staffed and often unappreciated medical community. These burn out victims need to be identified and offered a time out and some counselling when appropriate. Incorporating a policy and procedure that recognizes that fact can go a long way for increasing the moral and efficiency of a facility. Don't work harder, work smarter. Adding a prescription nurse or two could be beneficial.

Hopefully they have a good HR professional with a medical background that has been given the authority to work with the staff on these important issues and make recommendations.  

Just ask a nurse or a physician how they would like to work with a large bean in the heel of their shoe day in and day out. Than go home and place the bean in their leisure shoes and carry on with their normal activities with nothing for pain. Add a few burs under their arms and this still would not equal what most chronic pain patients must endure every hour of their lives. This was an activity that we were offered in a pain management class. Medical professionals need to have compassion and empathy. If they don't have it they have made a poor career choice.

Patients are justifiable concerned with drug screening. When the accuracy of such testing is significantly improved and there are no more humor errors than the clinics should have the authority to abruptly discharge a patient, until than considerations should be implemented. Throwing a CP patient out of PM, especially a long term one is a radical and unfair solution. I know that's a dream and no I have never had a problem with a drug screen. However I know many that have failured their drug screens and most of them took their medications just as they were prescribed.

So that's my two cents worth for now.

  

  
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Avatar_m_tn
Thank you Tuck, My wife runs more than a dozen community health care centers and yes, they all have triage nurses on staff, and yes they are overloaded in every area, not just this patient group. They also have PA's and NP's to deal with prescriptions. I'd have to have her here to get the details, but I was led to believe that there are legal requirements that make it difficult to handle the narc scrips with the others. I totally agree with you about the "friendly  voice" thing. This is in fact something we have tried repeatedly to implement. We have had a number of people assigned to that very task, but the problems continue to work their way up to the top person for a couple of reasons;  We have had such a hard time finding someone who could stay friendly. People hate that job. In no time they are ready to quit, and even give up their careers in this job market rather than continue to deal with the angry patients, and those patients can be relentless about insisting on talking to the highest level person possible and furious about waiting to be called back by someone in charge. I disagree however that is is easy to tell the drug seekers from the legitimate pain patients. Addiction is insidious and there is a huge gray area here.  There are so many patients who insist that they are not addicts and thus resent narc contracts,UA's, and even being evaluated medically, but insist on being given narcotics way outside the standard of care that the doc's are judged by, and they want them right NOW. I don't think that there is anywhere near the bright line between addiction and pain management that some people insist on. I think  that addiction can be a reasonable trade-off for people whose lives are being wrecked by pain, but to deny the addiction removes some of the self-knowledge and the tools needed to keep it under control and make the difficult decisions about the trade-offs between pain and addiction. I do speak from experience, I have a great deal of pain from the injuries I sustained when a drunk driver ran a red light and hit me at 65 mph while I was on my bike. When I had a doctor who wanted me to try to cut back on my medication I was very resentful "How dare they. I'm truly in pain." I always took my medication as indicated,. Well okay, sometimes I ran out a little early, but it was always because something had happened that month to cause more pain, and I always followed the rules. Only now, looking back do I realize that the doctor who wanted me to cut back had my best interests at heart. But I dropped her and found a doctor who looked at my X-rays and MRI's and validated my concerns about pain by upping my dose like I wanted. Over the years I built up a tolerance and the opiates began to make me more sensitive to pain ( I didn't realize this at the time. I thought my injuries were just hurting more) and now I feel it necessary to deal with my pain without drugs. I still have a lot of pain. Some days I just can't get out of bed. I can't sleep. And I've been so miserable that I've considered suicide. But the truth is that it's not that different from when I had drugs and I don't have to worry about withdrawal on top of everything else. I am not judging anyone else's decision on this. Pain can be awful and debilitating and I think that people need access to medication to deal with it. I personally think that we should give people what they ask for and let them make good and bad decisions on dealing with their own pain. But that's not the system we have. We have asked doctors to be the gatekeepers on this and they are under intense scrutiny to stay within certain standards of care. With that system there are going to be a lot of disagreements and friction over the necessity for medication and the amount needed. We are trying to find a better way of adjudicating these disagreements at least in the system my wife is responsible for. Perhaps a way that doesn't involve my wife being screamed at and threatened. Perhaps a way that doesn't leave some patients cut off and going through withdrawal and pain. But I am kind of thinking that the first step might be to be honest about how this affects many people and drop the idea that there are just drug seekers and legitimate pain patients and have everyone back off from seeing problem patients and bad doctors from their particular points of view.  
                   By the way, I just talked to my wife, and if we pull off this conference she likes the idea of actually putting pebbles in peoples shoes at the meeting as a little exercise. We'll let them go through the meeting that way and see if it provides any group insight into interacting with patients who are in pain. Thank you, that will work better than my idea of hitting them with a hammer while talking to them. I also will discuss with her your ideas that can be implemented by their HR department. I think my wife should be first in line for a break.
                   So thank you Tuck, I wish you well and I appreciate this opportunity to communicate. Thank you,  - Kolo -
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Avatar_f_tn
A FEW THINGS I HOPE DR.'S WOULD PAY MORE ATTN TO.
If you can't write my chart correctly how do you expect me to treat you like someone who went to college longer than I...MY Dr wrote on my chart" Has no scars, walks with normal gate" Just two things....I won't go into the 34 things he had to RE WRITE on his lunch hour cuz I came back & embarrassed him by "Jovially joking that I thought maybe he was very ill & concerned for his eye sight! "(I have great bedside manner..I try to humanize and make poking fun at myself , seem easy & relaxed so that  my Dr...Who is also HUMAN...can do.I have  about 26 scars on my stomach alone. I walked with a cane then...So he could have ignored me, postponed me, even dismissed me afraid I'd sue him, because he was at that time trying to  to assist get me to get a pain Dr & sent all of my records out to ALL the PMP's in my area LIKE THIS..WRONG! I could not understand why no one had taken me yet..I'd been with 1 Dr for 10 years b-4 that, and he passed away!
My Dr re-wrote but it didn't help. took 6 months to get in , 2 towns away .& Where I didn't see a Dr once.
However I have been in the ER for  MAJOR PROBLEMS quite a lot..(I won the "illness lotto" I like to say :) I try to stay positive because I have been clinically dead twice and in a 4 day coma with a 7% chance of living...& I'm typing to you today..P.S. death, would have been easier..I had no pain, no heavy "body luggage to carry!..lol Down side...I could not talk to my friends & family & yes I talk like I type..ON & ON...lol :)
SO, Yes Major problems! (organs that need removing, obstructions, stroke & breast cancer..etc,) EVERY TIME I have been to the ER here in NC. I have been treated awful. I know they see people who r not in real pain...But u don't need to do test on me to find out why I have been so ill & in Pain just lift my shirt!! However I feel that anyone who takes opiates is automatically discriminated against by many Dr.'s before they meet the person. PLEASE DR.'S TRY TO REMEMBER WE ARE PEOPLE NOT CHARTS.
I recently had a complicated Migraine, loss use of my right side. Also found I had many problems with my back from a really bad fall. Well I fell again, had to call 911 brought in by ambulance... I lay for 10 hours in major pain, and when I asked the nurse all they said to me was "dr said nothing for pain" No reason why, sorry." This male nurse, poor guy was just doing his job & about the 4th ot 5th time in 10 hours that I asked to see my DR. The nurse came in mad and said "Look he's using me as a buffer..I don't get mad at the server if i go out to eat & my food is burned" I said I understand totally, However i did not ask for you at all in the past 4 times I have called I asked to speak with my ER Physician, since he won't tell you the reason he won't give me something for pain. I am sorry I took up your time & away from other patients if I did. However I would be a little angry like you r, but at the DR also for not doing his job, and making u come in here over & over with no answer. If he has his reasons he can tell me..not use you like a errand boy with no purpose!!! He agreed. The Dr came in & said, " Are you still taking the morphine or have you found another med & weened off, cuz if u have weened off i can't give u anything." No I am still on the same meds I said, u can see it in my chart! I could not find someone to help me ween off them correctly. He left and 5 mins later I was given a shot of morphine and admitted to the hospital. I really didn't have to suffer all that time...!0 hours..done in 5 seconds!!!??He could have freed up a ER bed earlier and his poor Nurse didn't have to be made to feel like he's running in circles. Have the nerve to ask me! Tell me...!! But don't make me feel discriminated against because I am a pain patient. Like I am not important, I should just suffer, I'm not a junkie...and let me say this..even JUNKIES NEED HELP! Not to get more meds obviously...lol (bedside manner ;) I also gotta mention this...Long ago I had to take my mom off life support I was 25, she 50 & it was sudden. I'm an only child too. My dad got married on the day of her funeral..Long story ..his wedd was planned for that day & mom was not supposed to die. My dad didn't understand that I had to put my mom in the ground that day so no weddings for me. He stopped speaking to me after I lost my mom! THIS WAS 1996 & I started getting migraines, taking this nasal spray Dr had given me w/o RX , 6 bottles. STADOL.. It got so bad I did some research & found I was having rebound headaches from the stadol now, went back to neuro dr & asked "please take me off this, help me, check me in somewhere if u have to, this is out of control I hate my life!!! HE GAVE ME ANOTHER RX & TOLD ME I WAS FINE TO GO HOME!!! I TORE IT UP AT THE DESK B4 I LEFT I WAS SICKENED!!! I HAD TO CALL AROUND TO FIND OUT HOW TO GET SOME HELP, AND I HAD TO LIE TO GET IT!!! I HAD TO SAY I HAS A XANAX PROBLEM!! WHICH I DID NOT. I SAT WAITING AT THIS REHAB WHILE FAMILY BROUGHT PEOPLE IN SCREAMING,CUZ THEIR FAMILY WAS TRYING TO SAVE THEIR LIFE, I SAW COPS SPIT ON, HIT, PISSED ON...I EAGERLY AWAITED MY NAME TO BE CALLED AND I WAS THE ONLY PERSON WHO WANTED TO BE THERE..lol I WAS ONLY ALLOWED 3 DAYS THOUGH CUZ OF INSURANCE..I TOOK WHAT I COULD GET!!! SO PEOPLE ADDICTED, YES THEY NEED HELP TOO & IT WOULD HAVE BEEN SIMPLE TO JUST FILL MY RX'S. HOWEVER THAT IS NOT WHO I AM. IT WAS SAD TO THINK I COULD OD & MY "OH SO SWEET DR." WOULD NOT HAVE CARED! REALLY SHOCKED ME I GOTTA SAY, AND WHO'S TO SAY THE SAME THING HAS NOT HAPPENED TO A HEROIN ADDICT?? GOD I HOPE NOT..BUT I AM THINKING IT HAS. I DIDN'T WANNA SUE HIM...IF I WERE HIM I WOULD HAVE BEEN WORRIED ABOUT BEING SUED FOR GIVING OUT TO MANY BOTTLES OF STADOL!
It's hard enough on one's dignity to be ill!!! Make PATIENTS feel like  scum, OR IGNORE WHAT THEY R SAYING. There have been many times I have said ..."I wish I were dead! The pain is too much, but the way people treat me sometimes is not only demeaning, but it makes it hard on family who get pissed off when they see how u r treated . It's like u have been blackballed, u have a rep. & ur assoc with opiates...(Obtained legally and never failed screen or showed in ER cuz low on meds)  BUT ALL THE SAME GUILT BY ASSOCIATION!!  
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Avatar_f_tn
PLEASE ALL DR'S TRY TO REMEMBER THAT BEING ILL IS NOT PRETTY, IT WEIGHS HEAVY ON THE PEOPLE U LIVE WITH & THEY R UR FAMILY. U FEEL LIKE A BURDEN OFTEN AND PLEASE JUST TREAT US WITH DIGNITY...WE ARE FRAGILE LIKE YOU, YOUR BONES BREAK...OURS HAVE NOT HEALED AS WELL THAT''S ALL. BEST ADVICE TO A DR. B4 U SEE THAT PATIENT U THINK U ALREADY KNOW ON PAPER...TRY TO THINK OF A TIME WHEN U WERE FRIGHTENED AS A CHILD OR EVEN A GROWN UP , SAD, SCARED AND IN PAIN EMOTIONALLY OR PHYSICALLY & REMEMBER THAT MANY PATIENTS U SEE FEEL THAT EVERY DAY FOR YEARS! IT'S NOT ALWAYS SOMETHING WE CAN PUT BEHIND US. WE WISH IT WERE. & MANY OF US ESPECIALLY WHEN IN A LOT OF PAIN, DO NOT ALL COMMUNICATE THE SAME WAY. SOME DR'S HAVE CRAPPY BEDSIDE MANNER BUT R GREAT AT BEING A DR!!! SOME GUY WHO'S DR WAS GIVING HIM ULTRAM,& HE'S HAD AN ADDITIONAL INJURY WHERE HE WAS HOSPITALIZED AND THEY GAVE HIM MORPHINE OR DILAUDED ...IS GOING TO TELL YOU IT TOOK HIS PAIN AWAY & THAT IS WHAT HE NEEDS. HE DID NOT GO TO SCHOOL WITH YOU...HE IS NOT A DR..HIS LACK OF PCP KNOWLEDGE, UNDERSTANDING, & POOR COMMUNICATION SKILLS DO NOT MAKE HIM A JUNKIE. SIMPLY TO HIM, HE NEEDS TO WORK & HE CAN IF HE'S NOT IN PAIN AND HE WAS GIVEN SOMETHING THAT WORKED..SO IN HIS MIND IT'S AS SIMPLE AS "THIS IS WHY I NEED THIS & I DON'T UNDERSTAND SUCH A SIMPLE EQUATION IS HARD FOR A DR TO FIGURE OUT!!" I HAVE SEEN THIS HAPPEN SO MUCH, THEN LABELED & HAVE NO IDEA WHY?? THESE R SOME OF THE BIG CHANGES WE NEED TO SEE. I WILL BE HONEST I DON'T WANT TO LIVE IN PAIN, AND IF I COULD GET HELP BEING PUT ON ANOTHER MED NON NARC THAT WORKS WELL & WEEN ME OFF THE NARCS I WOULD BE HAPPY TO TRY IT!! RIGHT NOW...NO ONE WILL. I EXPECTED MORE CHANGE IN MEDICINE IN 17 YEARS!
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