Palliative Care the Path to Better Pain Management

Palliative Care the Path to Better Pain Management

By Steve Ariens, P.D. Pharmacist

Steve Ariens

Steve Ariens

We have all seen/heard where many politicians/bureaucrats have passed rules/regulations/guidelines that place a limit on amount of opiates that a prescriber can provide any individual patient.  Usually expressed in Morphine Equivalents.

This “cookie cutter medicine” concept totally ignores the patient’s individual source, intensity of pain and if the patient is a fast or ultra fast metabolizer of opiates.

Because these limits are being put in place by some/many that have little/no medical background or education. IMO, they have included loopholes for chronic non-cancer pain that may enable them to get better pain management. Our society, as a whole, has empathy for those who are suffering from terminal cancer, because they can spend their final days in excruciating pain.

Most/all of these politicians/bureaucrats have placed in these legal requirements, exemption for those who are terminal, cancer and in need of palliative care. All of these politicians/bureaucrats who are “short on medical knowledge” seems to believe that palliative care is exclusive to terminal cancer patients.

The World Health Organization (WHO) has issued guidelines for palliative care and demonstrates that palliative care can be a free standing method of patient care.

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:

  • provides relief from pain and other distressing symptoms;
  • affirms life and regards dying as a normal process;
  • intends neither to hasten nor postpone death;
  • integrates the psychological and spiritual aspects of patient care;
  • offers a support system to help patients live as actively as possible until death;
  • offers a support system to help the family cope during the patients’ illness and in their own bereavement;
  • uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated;
  • will enhance quality of life, and may also positively influence the course of illness;
  • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those      investigations needed to better understand and manage distressing clinical

To the best of my knowledge, there is no special education, licensure or certification for a prescriber to provide or diagnose a patient in need of palliative care.

Because most prescribers are fearful of the DEA coming in and raiding their practice, many are attempting to follow the letter of these laws.

Most/all laws have loopholes that can be utilized. In this case, this loophole could provide a prescriber a path to be able to provide better treatment to chronic pain patients by exceeding the imposed Morphine Equivalent limits and still conform to the letter of the law.

My suggestion to chronic pain patients, whose prescribers are reducing their pain medication and using these various rules/laws/guidelines as justification. Take a copy of the WHO palliative care guidelines along with a copy of whatever rules/law/guidelines the prescriber claims to be following and pointing out where those patient in need of palliative care are exempt from those limits, and ask the prescriber why they cannot be diagnosed as being in need of palliative care per the WHO guidelines.

I would suspect that all too many prescribers have only read the Morphine Equivalent limits and not bothered to read the entire text, and have established their own policy based on the general rule and not tried to find a reason within the text to allow them to provide better pain management for their patients.

Steve Ariens is a pharmacy advocate, blogger, and National Public Relations Director for The Pharmacy Alliance.

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There are 38 comments for this article
  1. SandraG at 11:54 am

    Some of our politicians are older people and I’m sure they have pain and their families have pain. You can bet your butt they are getting pain medication for them or families. Think about it. Do you think anyone would try to stop them DEA, CDC ect bread and butter boys. Makes me angry. You know as we get older we can get some serious pain do you really think they don’t have…..

  2. Tim Mason at 6:05 pm

    This sounds a lot like a visit to the VA Hospital between Chattanooga and Nashville. I took a vet friend of mine up there to revaluated for his disability. He was only getting like 50% disability and needed a motorized cart to take shopping because his wife was sick too. No body would take him. Not even the people where he went to church. My friend was messed up pretty bad. He had taken two steps off a Huey and woke up on a Hospital ship.
    He was looking for 100 % disability since he had aged quite a bit and kept getting turned down. I sat on the review with him and 6 different doctors. Half of them were women. I told him before we went in to remain calm thru the entire thing. I looked in each doctors eye with a blank expression thru the entire questioning. He left with 100% disability, guaranteed back 23 back pay several years, an Rx for the chair he wanted and a trip to the pharmacy on the way out to the car.
    I know we all get angry with these doctors a lot but in reality, if we can remain calm and state the facts, perhaps backed up by some legit studies, we can get where we need to be a lot quicker.

  3. Sandra at 9:55 am

    As I get into more appointments with Outpatient Palliative Care in Washington state I see they make up a program as they go along. I do not see them using Guildlines for Palliative Care. Oh they talked so caring an nice until you got into the program. They want to put you on all kinds OF medications. Don’t do it. Every time I try another medicine I have problems.
    Each time you stand in a very small doctors office I mean small where everyone standing up over the top of you shoulder to shoulder. Sometimes they are 5 inches apart. I feel like I can’t breath. They all are hitting you with question and what you should do. Your pain just builds and builds. Then they are concerned you are stressed. Now I can laugh at them at the time that’s not what I wanted to do. And here it goes here it goes Oh you need something for stress.

    Well it took me a while to understand what they are doing. Each person has to show they are doing something to earn their money. You have five or six people standing over you while you sit in a chair listening to them. They hand you paper work that looks like children’s coloring books to fill out answers about you.
    That is all you need coloring books to fill out when you are in so much pain.
    Bottom line maybe we shouldn’t go to palliative care in Washington state.
    They will dangle the carrot ( pain medication) in front of you. But they keep you in so much pain by cutting it back to a small amount it may not be worth it.

    We are a nation of pain with no country to help us.

    Please tell me about out patient care in your area.

    Sandra

  4. Tim Mason at 11:49 am

    Hey Chuck, Good post. Everything you said I agree with. I had a lumbar spinal fusion two years ago (ALIF 360- two surgeries in one with plate and screws).
    I did great for a while. Got a good solid fusion (I got a polymer disc that had holes in it filled with ground up bone) -Solid Fusion. Then the pain came back-only different. I had progressed back up to pre-surgical levels of morphine sulfate and oxycodone. 100mg/day.
    What I have developed is scar tissue. Even the descending S1 nerve root in encased in scar tissue.
    I elected to try Nucynta ER for 30 days. There is no generic yet but the API is tapentadol . I can only speak for myself but it has reduced my pain tremendously and little to no breakthrough pain. It is for moderate to severe pain where around the clock medication is needed.
    I had to make a choice between fentanyl or try another opioid called this which has fewer side effects.

  5. Sandra at 8:58 am

    Look up ….guidelines for Palliative care. Interesting. Every palliative care can be different. Inpatient outpatient ect… Some have to also go to a pain Clinic other places do not. Some can only come to your home other have a business set up to go to. It seems like most that don’t have a office are just jumping on for the dollars…not all of them. I talked to one back east , hospital outpatient, that seemed very upset that chronic pain patients were being ask to go to pain clinic. If you have to go make sure you know how the pain clinic handles patients. Please check this one out.
    Check around and ask them questions many questions. Go slow. I know your in pain and so tired..screaming in pain. We are nothing to the polititicans of this country but a way to make money for them.dont think they care about you or your family they don’t. They sure like big Pharma and CDC help $$$$$$$

  6. Chuck at 2:03 pm

    Dr. Oberg,

    If I may quote you;

    “My hat’s off to those primary care physicians who are better trained and will continue to script for opioids in this increasingly hostile environment. Until the media takes a willingness to think before they report and understand the difference in patients with chronic pain who do well with opioid therapy vs. healthy people/addicts who die from import fentanyl/heroin (illegal opioids) under the generic term ‘death due to opioids’, not much is going to improve. They’re doing a disservice to both chronic pain patients AND addicts – how could anything so obvious be screwed up any worse?”

    So well said and by an MD. Thank you for your voice of reason.

  7. Chuck at 1:59 pm

    Hi Maureen and to all posters here,

    Your surgeries are often included into the statistics as successful. The measure isn’t pain or whether you got your life back or how well you are doing 3, 6 or 10 years out but “did the bones fuse?” It isnt just spinal problems that cause pain I know as there are so many invisible illnesses and disorders that put people into our group. But spine surgery is a big factor in this and it is a place to start to get someones attention. These surgeons must be required to follow a patint post surgery for 10 years and report accurately the statistical success or failure of function vs dysfunction or many more mllions are going to be cut on by sugeons and then cut off from pain management without first having had the proper evidence to back up the surgical decision. As far as the opioid ‘war’ goes, it is insanity but I hope it is only a temporary insanity.

  8. Chuck at 1:42 pm

    Hi Terry,

    I know what you are suffering. Mine is not exactly but very similar and I have been in disabling pain for 12 years now and daily pain since the age of 23 so 35 years now. I didnt hardly take so much as an aspirin until 14 years ago and I worked hard and raised four kids. I will say a prayer for you and I wish you some relief abd all of God’s good blessings. What you struggle with doesn’t even compare to what most people experience in life and you are courageous. Thanks for adding your voice to this terrible injustice.

  9. Chuck at 1:34 pm

    Dear L,

    Thank you for letting it flow. Thank you for writing it so well and explaining it so simply and effectively. Each one of us lives a lifetime in a 24 hour period when we are under medicated or unmedicated. For some, yes they find that they are better off without the opioids on board, and I know because I have gone down that rabbit hole more than once, but when a rational adult looks the same doctor in the eyes once a month for ten years and has jumped through all he hoops and it is obvious that we need X amount of morphine X times per day to have a basic function and some relief from pain then common sense says to write the Rx. We are at our very best when we see you doctor, and we sometimes prepare for that fifteen minute visit for days and often we are already “tapering off” because we do not want to risk coming in even one day early, no matter how hard that last month has been. L, I hope you allow me to print your letter and make a thousand copies that I will post everywhere, and send to anyone that will listen, and I mean everyone and everywhere. I want 10,000 people to read your letter. Your letter puts it all together so well and expresses the misery of our situation and how exasperating it is to have to beg for a little pain relief knowing we could have so much better lives if allowed as adults to come to our optimum dose and stay there. We would never treat our family dog this inhumanely, yet we seem to have a collective pleasure in seeing our fellow humans beg, grovel and suffer.

  10. RazSey at 10:22 pm

    I just want to thank Dr Iberson for his opinion on treating historically painful conditions like trigeminal neuralgia. I have TN, have had it since 1998, and after finally beind diagnosed correctly, was told by the dx’ing dr, good luck, as his other patient, male, had it, and took his own life because the pain was unbearble left untreated. It is a horrible condition to have let alone go untreated. Mvd the now go to surgery, was one I had by Dr Janetta, who at that time was one that designed the surgery and made it successful. But, unfortunately for me, it didnt work, almost died, was in icu for 8 days. I had finall found a pain specialist who was willing to try and help me, and after many meds that gave me so many side effects, finally gave me a newer one called oxycontin. For years from 2001 to 2014 was able to control my pain on high doses. Tn is a hard condition to treat in some. People like myself that have tried every available procedure or surgery and those failed have no relief except for opioids, but, sadly because of the actions of those who abuse it, are now left to suffer. Along with TN, i have several other medical conditions that cause pain. Seems most of my pain is nerve related. After being dropped from one drs practice, and left with no meds, was left to be in pain and suffer withdrawals that caused my bp to drop to zero upon standing, so was essentially bedridden along with everything else I was made to endure, because of the greed of the fda, dea, and other agencies who are financially dependent on big pharma, that control our drs now. The downright fear of just being labeled and investigated along with knowing they cant win, now want nothing to do that may draw big brothers attention. I want to conclude witb again , a thank you for recognizing the pain we deal with every day. I know the only hope I have is to wake up in the hopes it will be a good day, a less painful one. Oh, btw, the powers that be are currently going to, uh quickly and quietly get kratom, which has been a lufesaver for those in pain, but wil, be rescheduled by the end of this month. Seems they want to do it so quietly that im sure most havent heard anything about it. But thats how washington works. We’d be lucky if it was just a mention in the news., after it was done tho. Kratom, a natural substance actually the gov has a patent on one of its alkaloids sine the early 60’s, and they want to hurry things along because of public heath and it has no medicinal value. Then why the patent? Make the public kinda go hmmm.. Its all about the money, just follow it and you have your answer. So much suffering, so much pain, its like passive genocide. People like us dont matter, but the addicts do, because of the money that can be made from their rehab, which can be several visits to rehab, then the suboxone type drugs they put them on for life. All that costs and makes money for those agencies i listed above. I so wish for a dr of whatever tupe, to just take a look at my case and based on that alone rx or not rx for me. As should we all be treated. JMO. My .02.

  11. BL at 2:53 pm

    In order for a doctor to prescribe for a patient any amount of pain med and not be worried about anything being said, they have to put a diagnosis of terminal on the prescription. In many, if not most parts of the country, a patient will have to have a terminal illness before they will be accepted by a Palliative care Dr. Palliative care Is Not a way to find a dr that will prescribe pain meds for patients that are no terminal.

  12. Pingback: Palliative Care for Chronic Pain | EDS Info (Ehlers-Danlos Syndrome)
  13. Sandra at 8:39 pm

    I have no faith in pain clinics. Recently I heard someone call them the Pain Mafia. Oh my. Everyone I have talked to seems to be saying the same thing. They get you in refer you to everybody they know for help and back around again ..acupuncture , Physical therapy . Steroid injections and a few other places . All the new drugs they can pump in you . You have to dig in your pocket for the drugs that do not work . Also the drugs have the side affects from hell.
    Now is you don’t do this they tell you you are just seeking drugs. If you complain about hurting they will tell you the same or tell you you are not cooperating with the program. Then it is good bye for you or you just can’t take it any more and leave.
    They are making so much money off the sick & ill people. Three may be some good ones but I have never heard of one.
    We are going to have to be one and join together so our voice will be heard. No one knows how many of us there is…things like name , address, telephone , email to reach you to get your name on things we want done. That way we can prove we are really a person with a vote. Pick a leader to start this list. Then when we are ready you can be contacted for the real deal to be put in place. It’s not working the way we are doing it.m
    Anyone have another idea please let’s talk about it . Please post them on this site

  14. Sandy Miller at 3:56 pm

    All of you said it so well! My neurologist has been semi-retired for about 2 years and has only kept me and a couple of others with this horrific chronic pain. Due to insurance, I had to change my primary care Dr. who could prescribe my meds except for the one for pain, which is only for breakthrough pain, but oh like so many others here, it has been able to get me out of bed. My neurologist told me how the DEA and all these no good others are afraid to prescribe pain meds. My new primary care physician has already told me I’m going to pain management to get off this one medication, the only one that helps my pain. I don’t even take them as I should, I mean my pain gets so bad, I have to take something and use my cold pack or heating pad, and that’s just for the Scoliosis surgery I had in 2013.. I had a hemorrhagic stroke in the right thalamus that left me with a pain condition from left side of my face all the way down that side. I’ve written here before so am sure you recall my story. I went to pain clinics for years for my back and got injection after injection after test after test all the while fighting the thalamic stroke pain until they finally determined my back was progressing so fast with Scoliosis, I was going to be in wheel chair or paralyzed. I’ve had polio as a child, the back pain for years before my stroke that has left me with this 24/7, 365 days a year in awful, horrific pain and then stent surgery for a 90% blockage in my heart. I would rather work any day than to live like this, now they want to take what little bit of pain relief we all get away from us. The junkies will always find a way to get their high, I just want a little bit of relief. I bet all these congress members and those will get help IF they ever have a boo-boo for an ache. These people who make these decisions as to what is better for us makes me furious! As Christian. I would never wish this pain so bad that I can’t even bend right to put my pj’s on or enjoy any type of life anymore, but do wish they could FEEL this agonizing pain so they understood, it isn’t right for us who really suffer have to get even worse because of these doctors who have done wrong or some darn junkie. I understand and agree with all of you going through this nightmare also. I just wish there was an answer for us, or something we could do. However, at this point, I don’t know where to turn. I’m not taking half the pain meds I need, but I’ve always been grateful for what has let me be a part of my family.

  15. Noelle ciancio at 9:23 pm

    I’ve said it before , I’ve written . The senators , the white house, the cdc, nothing is changing . I have RA , ddd, fibro, and now other suspected issues are coming right along ! No one will ever codeine their pain management dr for fear of being tossed from what little pain care they have . It’s sad and disgraceful . I’ve written several of the congress men and state delegates , president Obama and even donald trump because I used to wait on him at the breakers in Palm Beach . Not one person seems to care . No one . I’ve invites them to meet me, to see my joints swollen , my inability to walk st 48 yeas old. I cannot even get tenncare, insurance because a year ago with proper pain.mgMt I had a full time job making 96 k a year i cannot express that no one cares . This is truly genocide . I yell I scream in emails and letter, with my 178 iq , not with broken inabiliaed script . Still no one cares

  16. I.Hollis at 8:10 am

    Dear L–So well said! We are all different and the new guidelines were written for 70 percent of the population that metabolizes medicine in a “standard” way. Every doctor in America should know this fact. In the new policies developed and issued by HHS, and the CDC, specifically the CDC guidelines for opioid prescribing, one third of patients with genetic anomalies were left out of the discussion! One third! To not include these patients with defects of Cytochrome (CYP450) including those with ultra-rapid metabolism, intermediate metabolism, and poor metabolism proven by a simple genetic test, in which 25 percent of all medications are metabolized is discriminatory. Medications are developed for the 70 percent of those with normal metabolizing who have a standard reaction to these medications. This science was ignored in the writing of the new CDC guidelines. Now the guideline is being used by the VA, CMS, Medicaid Services, and State Medical Boards and other agencies, to target overutilizers and over-prescribers! No provision is being made for long-term treatment of chronic and intractable pain patients, like yourself, OR for those patients with genetic defects of metabolizing medications who need a higher dose of medication to achieve analgesia than the “standard” seventy percent of patients for which these guidelines were based on. Through no fault of their own, and because of genetics, people have been stricken with painful conditions that are often incurable and progressive, and standard medication protocols don’t work for them. The “inconvenient truth” of these “outlier” patients is real, and they were blatantly ignored in the writing of these CDC guidelines. With the new policies in place the doctors who treat them will now be looked at as over-prescribers.
    Most, if not all people on them have tried many different modalities and medications before starting opioid medication. They are often a last and lifesaving option along with other life-supporting medications and modalities. These people aren’t abusing their medications.
    They left out one very important point -we are all different and one size fits all medicine doesn’t work for approximately 30% of the population! Patients vary.
    News Flash- Everyone is different.
    One third are being ignored.

  17. S at 11:47 am

    L, I don’t have any answers but your comment is simply brilliant. I didn’t want to add anything after it; wanted to leave it standing there, hoping some or all of these suddenly ice cold doctors would read it and they might be the ones to answer. I had to write, though. You said it all so perfectly. I have been coming back here every day when I told myself I would stop, starting this very weekend, and I couldn’t figure out a reason I kept continuing to do it. I think I needed to read what you wrote is why.

  18. Maureen at 10:02 am

    Dear L, Well said! And I’m sure that most of us on this site relate to every word that you wrote. Those questions swirl around our every day life in pain.
    How dare someone interrupt the treatment that took each of us so very long to ‘fine-tune’ to get our ‘best possible’ relief.
    Perhaps you can do something with your words on the PEOPLE WITH PAIN MATTER site. If you haven’t already, check it out.
    Hang in there, be strong and keep being an avid advocate for yourself and others. Maureen

  19. L at 10:21 pm

    I just realized how carried away & long my comment is and it covers everything that is happening & not palliative care but I guess I needed to say it because it just came pouring out anyone that can answer my questions in it thank you. I just can’t understand how so many Doctors can even go along what is being said in the CDC guidelines & other laws etc.? I would really like it if someone can explain how for years decades so many of us in severe intractable pain have been doing well are stable on high dose opioids with our doctors, but now those same pain management doctors & PMC doctors that have been providing pain patients high doses for years decades & longer are now unable to continue? Without a word without addiction or abuse problems without any changes in health just stop? How is it pain management doctors don’t understand it is for primary care doctors? Or what about benefit out weighs risk? Why if it is not necessary to taper or discontinue are we being forced anyway? How do these pain management doctors justify this to themselves? How can they live with themselves knowing we have done nothing wrong there have never been any problems or we wouldn’t be there after all these years if we were problem patients? They have watched us over the years go from pain riddled crippled up people in agony to people that function, doing well, happy, look like we are just like anyone else. We aren’t pain free, but our pain is at a doable level so we can live with it & we can function better then before meds. They get us up to these doses or have maintained us at higher doses but we are expected to taper or stop completely & just suffer pain without or at so low doses that are ineffective? For what because drug addicts that abuse street drugs & anything else they can get in their hands? Why should I have to suffer for some one elses addiction if I am not? How is it ethical to punish patients for what other people do not what we do? This wouldn’t be tolerated in other condition or area of medicine. Then these prejudice drug rehab doctors somehow get their selves in a power position with the CDC to dictate what all chronic pain patients should or shouldn’t be allowed. They are labeling all opioid pain patients as addicts because of their bias opioid phobic & greedy intentions to profit off our suffering. But why do so many doctors over night flip a switch? Why are they going along with it all silently? Except for thankfully the few honorable compassionate doctors that are still willing to stand up for what is right! They have not only provided needed & necessary opioid treatment but refuse to sit by go along & are willing to stand behind their treatments for themselves & their patients. We all Thank you! For far too many of us the next thing we know we are being reduced offered restoration programs a fancy label for 30 day detox drug rehab programs suddenly without any warning without doing anything wrong? We are expected lower or stop like we were magically cured since our last visit. All because they fold under to the greedy Ins. co.’s that don’t want us to have anything for pain at all anymore. They think we should all be taken off all medications. Take Tylenol do yoga & meditation & go to their drug rehabs is that what we should expect? The reality is our doses lowered we are no longer the happy functioning pain patient we once were. We no longer walk in looking good like anyone else on the street. Our pain is returning the lower we taper down the worse our pain gets the less functional we are. We are looking like the miserable in pain suffering patients that everyone else wants us to be. Our lives are falling apart we can’t keep up with our home lives, the laundry, paying the bills, focus on conversations, anymore because our pain is getting overwhelming & eating away at us every moment of everyday. How do our doctors watch our demise & act like it is nothing? What makes it worse makes it all so much harder is the knowing. The knowing if we were still able to take the dose we had been for years we would not be suffering! We wouldn’t be becoming more & more home & bed bound. We wouldn’t look like we aged years in only months. The gray hair popping up the wrinkles are setting in deeper with the black rings around our pin & sleep deprived eyes because we no longer get restful sleep. We wake up in pain & anxiety slams into as the pain & distress our bodies are in constantly seems to get only worse & we have no where to go no one will help this is it & that is even more depressing. The severe Pain no longer held at bay the dam of pain relief is broken it has flooded through & it’s making us ill and we look it. Is this what they wanted? Did they need to see us in agony? Did they want us to stop living better lives & suffer in constant pain? I don’t know how anyone can expect us to go down even more or stop completely taking any pain medications that were helping & now expect us to survive in this constant unrelenting pain without any relief in sight? So many patients are no where near the suggested doses of this crazy one size fits all dosing. For so many that low level dose hasn’t worked in years & stopped working long ago. But it doesn’t seem to matter are we expected to go back to those doses and still be able to function? Reality check doctors that seem to get it No one no one ever wanted to have to take opioids depend on any medication to get pain relief. We certainly didn’t want to take high doses but for whatever reason that is what works that is what is necessary to get enough pain relief so we can function. If we don’t have any problems & we are living better lives functioning more normally why should it matter to anyone else what I or anyone else takes if there are no negative effects?
    Pain patients are being robbed of pain relief robbed of the ability to function & are being tortured by the pain in their bodies. Pain patients are being robbed of their entire life!! Robbed of the possibility of a functioning happy life with less pain and agony!! We are being robbed of a life that was worth living but because of what other people have done it is all being lost! We are robbed of a life worth living because other people the public & government has been allowed to decide for us without us that we should suffer we should live in pain & without the pain relief benefits opioid pain medications gave us all because of everyone else!! The 98% that have done nothing wrong have lost our rights to have the medical treatment that works best & we never even got the chance to say one word about it. Has any of our suffering has any of our deaths changed anything? Has it stopped people from becoming addicts? Has depriving pain patients needed medications stopped people from abusing? Has our looses or our deaths stopped any of it has it stopped suicide & over dose deaths? No it hasn’t changed anything. The reality is nothing has gotten better there are more over dose deaths more suicides they are skyrocketing especially among vets & regular pain patients. Street drug use & deaths are rising because people can only stand being in so much terrible pain for so long before they reach their breaking point & then will do whatever they have to to stop the intense suffering. They all know the medical community has turned their back on all of us. So we are now forced to go to street drugs, alcohol abuse or street drug use or suicide that is what we are left with. If that is what everyone wanted well that is what they got. The torture of chronic pain patients & those that died from it & all the suicides because of it will be looked down upon in the future. They will wonder why society the government involvement & our doctors how so many people were allowed to be tortured some to death for no good reason. People will shake their heads wondering why there wasn’t any medications developed to prevent this tragedy of such epic proportions? Why those deciding for so many lives didn’t have any common sense & didn’t have at least some sort of replacement medication ready to go before they just cut pain patients off to suffer without any assistance? Why did doctors allow the prohibition of opioids to happen? Why did so many suffer for actions NOT even their own? I just hope as many as possible can hang on as long as possible so we can have a chance to turn this all around. Get those that want help help & stop punishing pain patients for the abusers problems! For heavens sake stop the torture of pain sufferers & the misinformation that is condemning us.

  20. Terry at 8:23 am

    I too suffer with Chronic pain and have for over25 plus years. Back last year I was able to get out some with my family and then my Dr., decided to cut me down to half of the dose I was taking so now Im unable to do what I used to do with my family and the pain is so unbearable that I can hardly go anywhere.Also when he cut me down he didn’t taper me down even though I asked to be.He said I wouldn’t have withdrawal symptoms…..well I did I had uncontrollable shaking,sweating and all the symptoms that go along with not so pleasant symptoms.It was horrible.
    Im not trying to tell anyone this to get sympathy but to help you realize what I am facing and I have as follows; Rheumatoid Arthritis,Systemic Lupus,Necrosis of both hip joints,Hypothyroidism,Fibromyalgia,Interstitial Cystitis,Heart Disease,several discs bulkging in neck and back with stenosis and nerve compression,Neuropathy (severe to hands and feet,Heart Disease,Carotid Surgery and many many more.
    How can they let politicians whom don’t know how chronic pain affects us all tell us how much or little pain meds we should receive.It is not right to make us with legitimate pain suffer because of drug addicts chasing their high!!!! We that follow the Dr.s, orders and are subjected to an every month drug test we are treated like we are the drug addicts.
    Something needs to happen to help us all over the world whom suffer 24/7/365.There hasn’t been 1 day in over 25 years that I have not been in terrible pain.Also, I have not slept in a bed in over 6 years due to the necrosis in both hips.I have tried and if I fall asleep and turn on either hip I am screaming in pain!
    I hope that someone will listen and try and help us all!

  21. Tim Mason at 10:13 pm

    Hi Debra,
    Those steroid injections do not work as well on subsequent injections. I have been getting those injections for 20 years now. The shoulder and hip ones work well but I have had few of them. If you have to many injections of the steroid it can kill the joint. Necropsy they call it.
    I am 2 + years post ALIF 360 spinal fusion with instrumentation at l5-S1. Now scar tissue encases the descending S1 nerve roots and the foramanotomy (sp) at L5 exiting nerve roots are also full of perdural fibrosis. (fancy name for scar tissue)
    With my pain management doctor insisting on more injections I took his advice to my neurosurgeon. He said “NO MORE injections” for you in that area. A nerve block maybe, but no more steroids”.
    Sometimes you have to “fight fire with fire”. This is nothing short of the way attorneys work.
    I swear, some of these stories sound like we are working with the “Pain Mafia”.
    All of these problems will make a 180 degree turnaround soon.
    We just have to be more vocal. We really have nothing to lose but pain.

  22. Misty at 7:56 pm

    my doctor lowered my meds and I am very grateful for this info Thank You so much I will try and ask my doctor with this info in hand
    if i manage to be inactive I have moderate pain but if i do any activity it goes to severe
    i do not know how long this thread will take comments but those of who talk to doctors about this should do a follow up

  23. Debra at 5:41 pm

    I agree with alot of you. I am always in chronic pain from slipped disc in neck, back ,carpel tunnel ,neuropathy in legs and because my doctor asked me after seeing him for many yrs.if the epidermals were working since I was honest and told him no. He discharged me so he was also treating me with pain meds. Now I have no doctor after trying to find one I have to wait a month. In pain constantly but because of this my regular doctor won’t even treat me right. I would love for v them to feel the pain I do for one day and see how they would be able to deal with it without pain meds. They probably would go insane.

  24. I.Hollis at 5:33 pm

    Just saw this in The Lancet:
    “Palliative care and access to medicines for healthy ageing” in the article:
    “In 2014, the World Health Assembly passed resolution 67·19 urging countries to integrate palliative care into their health systems, an approach that must also ensure that controlled medicines are available for the relief of severe pain and symptoms. In 2015, the Organization of American States passed the first ever multilateral treaty on the rights of older people, which stipulated a right to palliative care, and the African Union Protocol on the Rights of Older Persons includes a right to the provision of palliative care.”
    “Herein another reminder that WHO and Member States should always include palliative care as a component of the right to health. This means integration of palliative care into health policy and treatment strategies as appropriate.”
    Wake up America! How did we let PROP determine our health policies?

    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)31495-7/fulltext?elsca1=etoc

  25. Michael wag at 3:47 pm

    DR Steve

    You have it so right, I would like to get this info public: The two Doctors that have books and CDs on how not to use opiates, are Doctors that have lost their licenses to do surgery.
    One is on PBS (with tape and CDs) on how to stop pain with breathing and acupuncture, and the food you eat. I tried all of this – even going to Asia to get the real thing (before using opiates). Opiates are not 100%, and everything else is not 100% either, so what’s the big deal? As soon as the election is over the heat might get off of this.
    Dr. David Hanscom, Orthopedic, has a book out and even made the DR. Oz show. He has been out of circulation – that you cannot find anything on his past. He did his 13th surgery as the head surgeon on me, and after sewing me up and sending me to the recovery room, as soon as it wore off – the most horrible pain you could imagine set in. I used a lot of 4 letter words…and that did help, as I got them to get the old blue ice pads and froze the back (these pads you cannot get any more) – that settled it down. The third day, DR Hanscom left to go back east to finish his schooling. Weeks later, he came back and called me at home – at night – and asked me to come into the hospital to do a CT mylogram. He then brought me back to the hospital to remove a screw that had gotten wrapped around the L-5 nerve root, with the tip of the screw well into the spinal canal. Well, 6 weeks was too long, as it left me with severe adhesive arachnoiditis. These last 30 years have been pre-hell, and I have tried everything that made sense. And all this I read about opiates being bad for you…all these people are really trying to make a name for themselves – or a pile of money. And us people in pain have to take this.

  26. Maureen at 2:00 pm

    Dr Ibsen, Well said! And Thank you!
    Believe it or not, over the past year, I’ve seen 4 different doctors in the Pain management group that I’ve been a patient at and not a single one has ever done a history
    on me nor even asked me why I am in pain!
    Having been a nurse of 34 years prior to my injury 12 years ago…let
    alone being a disabled chronic pain patient
    ever since then… even I
    know the dire
    importance of doing so!
    I’m truly blown away by it!
    But I need my medication therefore I wouldn’t dare speak up in FEAR of being discharged.

  27. I. Hollis at 12:46 pm

    Thanks for addressing this issue Steve! What a great idea! Again the World Health Organization has better ideas around pain treatment (the WHO stepladder for treating pain-we didn’t need any guidelines, this is a very humane way of pain treatment already!!) and and the issue of Palliative care.
    The website for Pallative Care in our state says:
    “Hospice provides a caring environment for meeting the physical and emotional needs of the terminally ill. Palliative care relieves pain, symptoms and stress of serious illness.” O.K. so, time to take them on their word! So many in chronic pain have serious underlying illnesses THAT AREN”T CANCER, and are not terminal, but are just as painful. What a stupid line to draw in the sand. Seems pretty clear cut to me!

  28. Anne at 12:32 pm

    While I was waiting to get in to see Dr. Tennant last year, I was able to get help from a palliative care service. When NO ONE else would help, they did. It was only about a fourth of my regular pre-taper dose, but it kept me from going through withdrawal and kept me going until I could see Dr. Tennant. I don’t know what I would have done without them!

  29. Ken at 11:52 am

    Interesting thought, but I highly doubt that the pain management docs will see chronic pain as palliative care especially in the state of Florida.

  30. Tim Mason at 11:40 am

    It is common knowledge that if you explain anything to a politician you must keep it on a 5th grade level.

  31. Chris at 8:42 am

    Thank you Steve! I’m one of the few who is still being treated compassionately by a primary Doctor. I’m well under the ME but still dread the day that this current amount might be cut. I’ve been wondering how those of us with opioid access can preserve that access and the quality of life they provide. I will keep these WHO guidelines handy. God Bless.

  32. Mark Ibsen MD at 8:17 am

    Thank you Steve. Well said.
    It’s just weird and tragic that is HAS to be said in this way.
    Any physician taking a history, interpreting records
    And
    Following a patient who has had multiple procedures,
    Or CRPS
    Or trigeminal
    Neuralgia
    Or any of the other severe chronic pain diagnoses could see that a palliative approach is the only Hippocratic way to be with these patients.
    We don’t limit insulin, bp meds, antibiotics or indicated procedures.
    We are treating pain.
    The end point must be measurable relief or improved functioning.
    This can be documented.
    Readily.
    Everything else is a sham.

  33. Richard Oberg M.D. at 8:06 am

    Well written Steve and completely accurate. I seriously doubt we’ll see physicians understanding that palliative care actually applies to chronic pain conditions outside of oncology patients with end of life pain. The public is bamboozled by everyone’s fear of ‘cancer’ yet try to get a handle on just how many people with terminal cancer are in pain – and in the current climate those who are get neglected based on the prejudices of treating physicians. Everyone seems to think that death by cancer means dying in horrible agony which simply isn’t true – the fear of dying is very real though. It’s also not uncommon for cancer patients to die from their therapy though this isn’t a subject most wish to talk about.

    With chronic pain treatment being relegated more and more to anesthesiologists, I see little hope that things will improve anytime soon. They’re simply NOT the people who should be in charge of this but rather those who understand the chronic non-cancer conditions that cause excruciating pain without relief of death. This would be internists, rheumatologists, and the like. In our area many oncologists take care of their own end of life pain management and if anesthesia interventional care is warranted, so be it. But, depending on where you live, anesthesiologist pain care isn’t interested in opioids and thus leaves many of us with few options.

    My hat’s off to those primary care physicians who are better trained and will continue to script for opioids in this increasingly hostile environment. Until the media takes a willingness to think before they report and understand the difference in patients with chronic pain who do well with opioid therapy vs. healthy people/addicts who die from import fentanyl/heroin (illegal opioids) under the generic term ‘death due to opioids’, not much is going to improve. They’re doing a disservice to both chronic pain patients AND addicts – how could anything so obvious be screwed up any worse?

  34. Maureen at 7:16 am

    Mr. Ariens,
    Once again, another well written post. Thank YOU!
    I’m a person who suffers from long time chronic pain.
    I’ve been through it all re: 4 spine surgeries and many many treatments.
    At this point in time I consider myself one who simply needs my meds, for the
    rest of my life, to help me do the simplest of things. I am not capable of doing much outside of my home. Given my many treatment experiences…I’ve become content with that at this point.
    Therefore I consider myself one who simply needs ‘Comprehensive care’.
    After reading your writings…I suppose I would also fall into the ‘palliative care’ category.
    My pain med has been cut back and therefore I suffer more.
    The doctor does not want to ever discuss that. It’s his way or the highway.
    It’s the most bizarre thing to me. Especially considering that I’ve previously (in Ca. and in Ct) had the best of care before moving to Fla. 2 yrs ago.
    I’ve entered the Twilight Zone for sure!
    I would love to bring your suggestion to my doctor’s attention but for now…the thought of that brings fear of being ‘discharged’! Truly.
    Please keep up the great informative work that you are bringing to us and the NPR.
    Thank you!

  35. Angel at 7:05 am

    Very interesting post. I’m one of the many patients who’ve been drastically reduced in needed medication due to the CDC guidelines. My doctor actually lowered each one of his patients across the board that need something stronger than hydrocodone to manage pain. Since the reduction I’ve been home bound and mostly trapped in bed with very poor sleep and have developed high blood pressure. It’s taken me from a functioning wife and mother and now one who’s trapped by my pain (and guilt of not being able to be me to my family) with no end in sight. Thank you pain foundation and all of you contributors for advocating for us. May your days be blessed and your pain manageable.

  36. Kris at 6:45 am

    Very interesting thought, Steve. The millions living with chronic, severe intractable pain belong in a separate category and should not be included in any guidelines designed for the primary care physician’s prescribing of opioids. We need larger doses of these medications in order to exist in other than a living hell. The goal of palliative care is neither to prolong life or hasten death in an incurable situation. I think we, as human beings, deserve this humane treatment. Those that seek to deny this are but one traffic light from finding out themselves.

  37. Joan Hamm at 3:26 am

    The Republicans led by Paul Ryan pressured Obama to sign a bill that will be causing many people to die in pain due to decreasing Medicines that ease the pain to allow people to live. RSD CRPS is a pain disease that without medicine one cannot stand the pain. It can get pain worse than cancer pain. It’s pain is like a woman In Hard Labor. This disease RSD CRPS must be listed at the top of pain diseases!!!!.