Should Others Tell Us if We Are in Pain?

Should Others Tell Us if We Are in Pain?

By Chloe Mathews

Chloe Mathews

Chloe Mathews

My 94-year-old mother underwent emergency surgery for a broken hip in October 2014. On the second day, the hospital discontinued the opioid medications she had been receiving for pain. The nurse cheerily announced that “round-the-clock Tylenol” was the new post-surgical protocol. Unfortunately, the Tylenol did not provide relief

Once the pain became intolerable, I was able to obtain opioid medications for her which worked. But I had to know the name of the drug and ask for each pill every time. My elderly mother was too confused to request the medication on her own, so she just suffered when I wasn’t able to be there. I believe this contributed to her being so profoundly traumatized that she attempted to call the police to rescue her from the hospital.

The situation was similar at the skilled-care facility where she went to recover. When I told her doctor that the Tylenol wasn’t working for her pain, I got a truly disturbing response:

“The Tylenol is helping with her pain, she just doesn’t know it,” he said.

Should others tell us whether we are in pain? Sadly, I think the official government answer is yes. And it is the absurd result of emerging federal policies.

In a massive anti-opioid campaign, the CDC, DEA, FDA and other federal agencies are mandating drastic cutbacks in opioid prescriptions. At the same time other government policies advocate an “evidence-based” (backed by studies) model for medical decision making. Put the two together, and pain goes untreated because patients cannot supply “evidence” that they are in pain.

I was horrified to learn that credible medical professionals are actually advocating for such an inhumane policy. The president of the American College of Emergency Physicians (ACEP), Jay Kaplan, MD, wants to delete all questions about pain care from hospital patient satisfaction surveys because he says “there is no objective diagnostic method that can validate or quantify pain”, and that allowing patients to comment on the quality of their pain care may lead to over-prescribing opioids.  (Link to letter)

“We’ll tell you if you are in pain.” Is this the message we really want the federal government to send us when we are sick and vulnerable? I hope not.

Chloe Mathews lives in California with her husband, dog, and 95-year-old mother, for whom she is the primary caregiver. Chloe has Ehlers-Danlos Syndrome, a genetic connective disorder of which tissue fragility and chronic pain are common symptoms.

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Authored by: Chloe Mathews

There are 31 comments for this article
  1. Sandra at 8:33 am

    On the presidents web site they have a free place to start a petition. Forming it right is what is needed to cover all issues. It could be posted on this site, I think they will let us. Also a a Pharmacist site Steve Ariens, google it you’ll see his info.
    We have enough people we just need to show strength. I,m really tired of always talking about this it goes no where. I don,t want to be CDC and big Pharmaceutical company’s victim. We use to be out burning our bra s to make a point. We still have it in us we are not cry babies !!!
    Sandra

  2. Jean Price at 7:46 pm

    There are loads of organizations that support chronic pain….yet they are all working singularly without any type of cohesive master plan! They are so fragmented, I’m not sure they will accomplish what’s needed. If they all joined forces, they would have to be listened to. That’s probably not happening though, each is their own kimgdom! And why is this….isn’t pain and those who have it the issue? Can’t they see this would help? Maybe we should flood them with letters to unite!!

  3. Sharon S. at 2:56 pm

    As Sandra posted earlier in April….we’re all saying the same thing so WHAT DO WE DO ABOUT IT?

  4. Anne Fuqua at 10:20 am

    I get so angry when I hear about a person, especially someone your mother’s age being forced to suffer like this. Patients with simple confusion that often occurs in elderly postop or dementia are at the most risk for this type of treatment because they are not able to adequately communicate their needs. So much progress had been made in this area by geriatric professionals who developed non-verbal / behavioral scales for pain assessment, but now it seems all of that knowledge has been pushed aside in favor of the “pain is better than addiction” mantra. It’s true that opioids can contribute to falls, delerium, and respiratory depression in the elderly. This doesn’t mean that they, or anyone else, should be forced to suffer like this. It just means that they require extra care. If you make it to 94, you have earned that in my opinion. Sadly our society values youth and doesn’t value the elderly like many other cultures do.

  5. Tim Mason at 3:46 am

    Thank you Jean for the added information. I actually require a lot of information to come to a conclusion about anything. I have been a analytical chemist for 42 years. Of that time, 23 years were spent in pharma developing methods for drugs and natural drug products. I never claim to be an expert. My character flaw is that I need a lot of information. (I put off a back surgery 20 years for lack of sufficient answers from surgeons)
    I am trying to figure out what is really going on with these changes in medicine.
    Some of these proposed changes are being made by individuals that are in the wrong jobs. Promoting people to positions that they are not qualified for is “rampant” in to today’s workforce.

  6. Jean Price at 3:29 pm

    Tim…you are most likely asked if your medicines are providing “enough” relief to assess the efficiency of them for proof that they are working and shouldn’t be cut! Unless they are giving you at least fifty percent relief, it’s likely they would not be upped, but rather cut! Some people have had this happen, others have had dosages reduced arbitrarily and some have had them discontinued abruptly causing no end of health issues. Areas of the country seem to be different, but doctors do not want to hear you think a few more would help, in most cases. This is really hard for those whose pain is tied to their activity level. More activity means more pain, yet the same amount of medication to make do with. So very wrong, medically and humanely. Because counts are so strict, people have lost the ability to appropriately control their pain on exceptionally bad days. And this can lead to a down hill spiral for some conditions. No taking one more, because that’s would mean you have to take less one day and there again, pain would get the upper hand. This is such a mess, seriously poor medical care. I’m glad you’re untouched now, yet I’m of the belief it’s only a matter of time. I so hope I’m wrong.

  7. Tim Mason at 11:13 am

    Michael Wagner: This is my experience too. My medications have not been cut back . In fact, I am always asked if I am getting enough relief from the opiates that I do get.

  8. Gregory D. Rosenberg at 11:56 am

    There will always be those that abuse the system and the drugs themselves. The rest of us shouldn’t have to be penalized for the smaller percentage of those currently cheating the system and abusing the drugs.

    I would be OK with a pain specialist was responsible for managing C2s and similar pain medications. Further, most family practitioners, GPs, and internal medicine docs could establish a consultative relationship with a pain doc that their patients could be referred to or that a doctor would at a minimum should that a consultation took place.

    I for one look for every possible way to get off of the drugs I take. I was able to use an inversion table to decompress my spine (~$200). I can’t do sit-ups as it causes acute pain in my cervical spine and acute muscle spasms in my neck. I got a hyperextension table for $76. Now I can build up core strength and loose weight without increasing my cervical spine pain level and avoid or at least partially mitigate the associated muscle spasms in SCM, Scaliness, or Lavator. The above alone does not stop my pain completely, but it helps me better cope with it.

    Turmeric and Black pepper tincture and an essential oil blend called Tamarac are two other tools in my arsenal.

    I had worked my way almost completely off of C2s, then Medicare decides that People over 55 shouldn’t take Flexural. That was one of two of the most critical medications I take. Muscle Spasms generally lead to pain. The administrative law judge was also of little help. My other critical medication is Benicar HCL. Medicare also denied that drug. I would trade in all of my other drugs if those were the only two I could take.

    So Medicare is happy to pay for my C2s which are all fairly expensive drugs and deny me one of the oldest and cheapest drugs in the pharmaceutical space today.

    Now they want to take those away from me too. That would leave me crippled and completely unable to work at all.

    I might add that I am blind (some days I have light perception or a little better than that). The cervical muscle spasms impact my occipital lobe and cause acute eye pain in the only eye I can sometimes see light and some days even see very large print. Then my vision blurs out and completely blacks out.

    Without the Flexural my Neuro-Opthalmologist feels I will loose 100% of my light perception and be thrown into complete blackness if the spasms can’t be calmed down.

    That would further impair my mobility, impact my limited computer use, and pretty much suck.

  9. Sandra at 9:36 am

    Unless the people band together with petitions and telephone calls we are going to lose our rights in this country. Taking medicine away from sick hurting people should be a crime. But the CDC and big Pharmaceutical companies are making way to much money to care about the sick. They even run the doctors lives now. Pretty slick. We are the only country in the world doing this. Oh but do you see one politician talking about helping the people. No the pharmaceutical companies give way to much money to the politicians to help them get votes. This also should not be kept quiet. Dishonest politicians. All of them. I have lived a long time but I,m completely ashamed politicians. Wonder why the people are saying they want Trump in because they are expressing themselves about not caring anymore which idiot gets in. Hurts I no but that’s the way it is. Trump would do just as good of job as the others have for the people.

  10. Sandra at 12:58 pm

    Ok we understand but what do we do about it ???

  11. Jean Price at 12:14 pm

    Gale…many people are going through exactly what you describe, and yes…it is criminal! Neuropathy and neurogenic pain is a life changer, and can consume what little joy we try to find. I imagine you have tried many things, but in the hope this may be something you haven’t…many endocrinologists have found a low dose (30 to 60 mg) of Cymbalta has been very effective for the neuropathy pain of diabetes. Even if you’ve tried other antidepressants for pain without good results, this might be worth a try. I had tried several over the years, to no avail and was prescribed this by my pain clinic doctor and it was amazing. Come to find out, my endocrinologist uses this routinely and had many good results. Diabetes is hard enough to live with, and the added pain seems too much to bear…yet if you can just take an edge off, sometimes this is enough to keep going. Know you are not alone and your feelings are mirrored by many. What you’re asking for is not out of line, it’s appropriate to NOT want to live with pain! You are worthy and courageous and I pray you can find what you need to have a life worth living!

  12. Gale Jenness at 2:11 am

    I’ve been dealing with severe pain from Nueropathy associated with type 2 diabetes and either taking morphine or methadone for over 16 years now! I live in Washington and roughly a year ago my Washington doctor decided to take my Methadone away from me. Telling me it was now against the law for them to prescribe methadone! Without methadone or morphine I’m in so much pain I literally pace the floor in tears all day and night till I finally get so exhausted that I fall on my couch and asleep the moment I’m laying flat on my couch! But only to be woken back up by the pain in roughly 15 minutes to a half hour and start the pacing in tears all over again. Now it’s even worse cause I have to go through the addiction withdrawals on top of it all!
    I was so upset and deeply depressed from no longer having my pain meds that I stopped going to the doctors all together and refused to take any medication including my diabetic meds that controlled my sugar levels! I figured at this point with pain so bad there’s no way I can concentrate on anything else but the pain and no way I could do anything else but suffer in pain pacing my floors in tears, that I just as soon be dead then to be forced to live this way! I had no energy to look for another doctor or find any other way to get my methadone. If it not been for the lady I live with taking it upon herself to find me another doctor that would give me my methadone. I highly doubt I’d be alive today? Fortunately she found a Oregon doctor that would prescribe my methadone, but it took her several months to get any help for me and in that time I took no medication whatsoever for anything and really was hoping it kill me by not taking the medication! Even though it didn’t kill me, it did mess up my eye sight and I can’t see as well as I use to. I knew the risks but no longer cared, living in this kind of pain on a on going basis with no relief in sight is no life at all! There’s no quality of life when your living with this kind of pain, even with the methadone I wake up in pain everyday and asking myself why do I still want to go on living? The answer to that is at least with the methadone I have some quality of life and I can still do some thing and enjoy a little of my life even though it is on a very limited basis! But even a few hours here and there of relief and being able to think and do other things that you don’t have to have your whole life consumed with pain! It leaves just enough hope for happiness in a miserable life to go on living!
    But here we are again taking the pain meds away from not only me, but probably thousands of other people that’s in just as much pain as I am, maybe even more? This is not right, it’s in fact cruel and inhuman! It’s sadistic to put people in pain through this situation and nothing good will come from it. I have no doubts in my mind that suicide rates will sky rocket, but I also wonder if that’s what this is really all about in the first place? People like me that’s been disabled due to pain are a drain on society. We get our disability income and yet barely survive the cost of living! We have Medicare, yet still can’t afford to go to the doctors cause we can’t pay for the 20% that’s our cost to pay or even if there’s a copay and coming up with $15-35.00 every time we walk into a doctors office can be nearly impossible to pay! The government stops giving cost of living increases, but the medical costs keep raising higher and higher! medication costs are no better, their increasing too! It’s depressing enough dealing with this without having to deal with taking our pain meds away too . How can anyone in their right minds treat another person like this fully knowing the suffering their putting people through? I believe it’s only a matter of time where someone turns to violence! You put enough people where all they have to look forward to is suffering in pain and they no longer have nothing to loose and dying turns into a blessing without our pain meds. Pain makes a person’s temper go ballistic at times and anger is one of the things that can make you forget about pain! So there’s an incentive to stay angry! Sooner or later someone going to go crazy and someone will get hurt. Sad part is, it will be someone that doesn’t deserve this kind of anger. But as usual, it will take violence before any of this is made right again and people get the medication they need to not suffer every minute of their life!

  13. MARTHA ARNTSON at 5:00 pm

    Carol Kennon: If you read back, (warning: a lot of papers!), from the ORIGINAL proposition regarding the new “guidelines”, there was supposed to be “open forums” on the Internet and other. Somehow, it came out in those reports and papers that the CDC had “technical difficulties” when it came to the Open Forums regarding actual Pain Patients and Pain Management Doctors. It got so complicated I had to go directly to the actual transcripts from back in April of 2015 and read through to around January of this year, 2016. The CDC, along with The Phoenix House (one of the main contributors to the “Anti-Opiate movement”), and some other notable (or not) inclusions were: BIG PHARMA! Imagine that? THEY, who decided to push OXYCONTIN as a “non-addictive drug” to every single doctor in the United States was actually INVITED to participate in these forums. They, the very people who now got the newer drug approved that is 10X the strengths of their Oxicontin drug. So, is there some devious behavior going on at the CDC, you BETCHA!

  14. Carol Kennon at 2:58 pm

    Mona, Funny that you mention conspiracy theory because that concept has been occurring to me as I reflect on this dismal situation. I was dismayed when the CDC started posting overdose information that was questionable. I wanted to believe though that they remained honorable. The more they have done on this issue though the more I think their obvious bias and agenda makes them appear corrupt. I wish an investigative journalist would study the approach of the CDC to chronic pain treatment. It will take a lot for me to regain any faith in them.

  15. Jean Price at 2:04 pm

    From all these stories of denied pain medication post operatively, it looks like this is something to pinpoint with the surgeon BEFORE the operation. It used to be a given that controlling pain was part of patient care after surgery….not so it seems anymore. This is so counterproductive since pain and the inflammation it causes can actually delay healing. Don’t think I’ll ever schedule another procedure without a written guarantee that my pain will be appropriately treated! If they judge me for this, so be it! We’re judged anyway! This way, the post surgery pain won’t delay my recovery.

  16. mike at 10:47 am

    I was scheduled for a three-level cervical fusion. The surgeon sent a form, and told me to take it to my PCP for a physical, which I did. It asked about my meds, and the doctor wrote Fentanyl 50.

    The pre-op instructions told me not to take any meds, and I figured they’d look at the form, and give me a new one afterward. Surgery scheduled for 7 am, but didn’t take place until 10pm!

    I was given NOTHING. The next day I wanted to throw myself out a window. I asked them about my Fentanyl, and told them it was on the physical form. They told me the form had been filed down in the office; the surgeon never saw it!

    I left two days later with a scrip for Tylenol 3. My dad drove me home 150 miles. By this time, I was ready to throw myself from the car.

  17. Mona Twocats-Romero at 9:57 am

    I know before I start that many will think I am a conspiracy theorist. I am not. I believe that the CDC, FDA, and DEA are becoming more and more focused on opiate medications because they know cannabis legalization is just around the corner in the US. Since our for-profit prison industry depends upon thousands of cannabis users to keep their cells full and the money coming in, they need another reason to put people in jail. Opiates are the key. They must keep the for-profit prisons full and opiate users are the new cannabis users. Money, money, money, it all comes down to corporate profits. Don’t believe me, do your own research on private for-profit prisons.

  18. K. WIlloughby at 8:52 am

    I just finished an argument with the VA – they too want to remove all pain meds and the men and women coming back from IED’s, carrying 100 lb packs in 100-120 degree weather as well as the normal wear and tear of being in a war zone not once, not twice but 3 to 5 and sometimes more tours. The new method of pain control is called “Analegesic Pain therapy – almost as effective as the old adage of placing an aspirin between your knees to keep you from getting pregnant and girls that carry a dime in their purse to call home will never be raped. I had a doctor – who was NOT my pain doctor, NOT my general doctor and NOT my neurologist call me and jump down my throat because I wrote to the VA in Washinton DC about being elderly (61) and severe crhonic pain and exposure to Agent Orange, Agent White, cesium, radio isotopes that idiots left on the firing range when they were not spraying us with chemical warfare chemicals and burn pits on days we were running with full packs through the stuff – – he wanted to inform me that my opioids that were 210 mg , down to 180 mg would be dropped to 60 and then weaned off. He didn’t identify himself, he didn’t say what department – I told him to “Have a nice day, good bye” and hung up – 10 minutes later another call from someone who did not identify themselves- to make a long story short – another message to VA in WashingonDC and not only did they offer acupuncture, yoga and chiropractor care but they were going to freeze my prescription at 160 and see how it goes. The first doctor drilled me about the CDC paper – the one in Dec 2015 allowed doctors to make their own choice – the one that came out in Mar 16, 2016 I had not read – The CDC let the ‘pain studies” know that they were going to release a new guideline and gave them 48 hours until they unveiled it. Several agencies such as the agency Politico printed : HHS split on CDC optioid prescription guidelines cite the “level of evidence cited to support the guidelines, which are non-binding on physicians is love to very low and that’s a problem said Sharon Hertz, FDA’s director of the Division of Anesthesia, analgesia and addition products. QHRQ health scientist Richard Riccardi called the recommendations ‘ridiculous’ and ‘an embarrassment to the government’
    The dissension within HHS adds to a chorus of complaints from both the pain community and major medical groups including the American Medical Association and the American Cancer Society Cancer Action Network. That was from an April 7, 2016 post.

    Pain New Network went further and in an interview dated Dec 04, 2015 cited that “according to Politico, some committee members reportedly called the agency’s recommendations ‘ridiculous” and “an embarrassment to the government Complaints immediately arose from physician organizations and patient advocacy groups that the guidelines were developed in secret, with too much input by special interest groups such as the PHOENIX HOUSE, which operates a chain of addiction treatment centers. FIVE PROP BOARD MEMBERS, INCLUDING ITS PRESIDENT, VICE-PRESIDENT AND FOUNDER are on committees that helped the CDC draft the guidelines. It is time to use you power of voice and telephone your congressman, send a telegram, post it on their web pages. SPECIAL INTEREST GROUPS have no place in the treatment of chronic pain.

  19. G. Depaolo at 8:03 am

    After being operated on for lung cancer at Sloan Kettering in New York, they wouldn’t give me opioids medication but insisted I walk less than 24 hours after the surgery. I tried to do what I was told and after a while I had a severe panic attack to which they all gathered around me and gave me a (laughable) breathing treatment. Thank god I’m in remission but hospitals, even the best of them, don’t seem to care. This is becoming the dark ages. Why?

  20. Jean Price at 11:12 pm

    The bigger issue with the survey questions is that hospitals are REIMBURSED BY MEDICARE BASED ON THE SURVEY NUMBERS!! Therefore, when people aren’t treated appropriately for their pain and give low satisfaction scores, it diminishes the hospital’s income!! Funny how it’s always money that’s the driving force, not compassion or humane treatment. It is not only unethical to inadequately treat pain, it is also medically unsound. Pain can create inflammation which can cause more pain, thereby creating more inflammation and even delay healing or cause further injury! A post op patient is likely to get all kinds of muscle strains and pulls when trying to walk after surgery without pain medication to ease some of their surgical pain. This is criminal! The senate is involved with the questionnaire issue also, and what qualifies them medically? There are only two questions out of thirty two about pain anyway! This push to remove those two questions really amounts to taking pain assessment and pain treatment out of patient care objectives totally…and this is Dark Ages medicine! How do we fight stupidity and and senselessness…because this is the issue we are up against! These are the people we are up against! No ethics, no qualifications, no compassion, no experience, and obviously no sense of moral obligation to sort through the facts and realize pain care with opioids and drug addiction are two totally different health care issues. Wish they would put this much effort towards global warming or fighting terrorism! We’d all be better off!

  21. Michael Wagner at 5:14 pm

    I don’t understand why there is a lot of patients that have had the opiates cut back, and I know some but they haven’t cut mine back, anyone know what is going .?

    is it that I am going to a pain specialist, the reason I still keep getting the same amount each month.

  22. Jill McCoy at 2:49 pm

    Leslie, I feel bad for you. I have a daughter with the same attitude as your father but not as extreme. I have osteoarthritis pain the past 30 yrs which now at age 71 is everywhere. Talk about a disease that gets no respect! Can’t count the number of times I’ve been told I’m lucky I don’t have rheumatoid! Don’t feel so “lucky”. My narcotic pain med is for lumbar canal stenosis classified severe for many years. I worked in medicine almost 28 years ruining my back giving the best care to my patients.
    After three surgeons told me surgery would not help my pain, my pain management Doctor found me a surgeon with the Cleveland Clinic who wants to fuse my back from T-11 to S-1! My entire lumbar spine. It’s a big deal, involving much pain with all the research confirming it doesn’t work. They are both using the threat of no longer being able to treat me with narcotics as a push to get it done. The Cleveland Clinic is a formidable force and I’ve been told they are starting to form policies against using opioids for chronic pain. The rest of the world can not be far behind . I am livid !!! I want someone to tell me WHY!

  23. Sandra at 2:36 pm

    I will guarantee the politicians family’s are treated for pain 100 per cent helped. They are putting money into treatment for people that are addicted. That means the people that have serious pain and complain about it they will say your addicted. They are already doing that in hospitals.
    I was a counselor for 30 years you can ask any treatment facility about gathered information they have given to the state about how many people stayed clean and sober.not one place can prove what they submitted, not one of them . Out of a hundred people you may get three that stay clean if your lucky. So Obama give them more money for treatment. Maybe you should let our Doctors be doctors to hard for you. Keep it simple stupid.

  24. Kathy Cooper at 10:32 am

    My Mother went through nearly the same thing. She had Lewy body Dementia, which was not diagnosed. The LBD causes some different reactions to Medications, though ad Tylenol was helpful. She had fallen and was hospitalized, so without the Diagnosis of LBD, the medications she was given made her worse. After the fall, and subsequent surgery, she was “different” the pain, trauma, or the Meds had escalated her mental decline. She was never able to walk again. After several Months of confinement to wheelchair, they decided she needed a second hip surgery.
    Following the second surgery she was completely non responsive, we though she was dying. The Nursing home staff, it turned out had not followed up on pain medicaitons after she left the Hospital. I asked the nurse, what she was on. We assumed she was non responsive because of the Medications, instead I found out that “She would have to ask for the Medication”. She was not even able to talk, even when she was talking she was unable to articulate pain. They had not given her so much as an acetaminophen after she was returned from the surgery. The Staff ignored the problem. I had the Nurse give her an Acetaminophen and with half an our she was at least responsive, able to look up and talk. this was disturbing. This is what he Policy was, people with these kinds of condition are unable to request anything or articulate that they are in pain. I could tell by her body language and level of interaction.
    This is very common in Nursing homes, it is likely a lot of people die in shock, after their Medications are discontinued from the hospital. I know of other people who died under similar circumstances. This new pain Agenda will make this worse. If people are non communicative, this has some really scary implications. I know people who are afraid to give dying people in agonizing pain, medications. It is pretty horrible, that even this bit of relief at such a time is a negative thing. It scares me that people are so out of touch, or unable to think for themselves, that this is just wrong.
    I had back surgery years ago and was denied pain medications after the surgery, even though i was on them for several years due to a previous surgery, and chronic pain. I woke during the surgery, because even though I carefully explained the medication I was currently taking, the anesthesiologist did not calculate that. I can’t eve describe what it was like, I was traumatized. The Hospital refused to discuss it and had their Lawyer send me a Threatening letter as i recovered from back Surgery.
    This pain medication agenda is about a lot more than Pain. The Medical industry has not been acting in the Interest of Patients for some time. There is no Science involved. This is a business, and the Profit motive, and the protection of profits are the only goal. They have Lawyers and lobbyists that write the Laws, and use the Science of Marketing and Public Perception to continue this agenda. None of this makes any sense and these are not isolated incidents. There is a lot more going on here than people are aware of.
    The whole “opiate Epidemic” was a very calculated attack on the Health Care System.

    The implications are scary. Sure it will be dismissed as a “Conspiracy Theory” they know just how do discredit critics. Even the Stories about “Breakthroughs” in Health Care” are carefully placed, to give the impression of improvement or progress. Think about it, even though we have “The Most Expensive health care In the World.” the only people that have good outcomes are the one with a lot of Money. Yes they have had some new treatments or medications, but these have cost billions, and have not significantly changed much.
    Look at the Big Picture we have little real improvement. it is only perceived improvement. When Profit is the motive, there in no incentive for improvement. There is no oversight, the Agencies that were suppose dot protect the Public don’t even collect the real Data on this, if they do, the Industry has no requirement to report it. The amount of money they have has influenced if not outright pain Politicians and Policy makers. The old people in Nursing Homes are just a Profit opportunity. There is no concern for their health or well being, just a captive audience. In my Mother’s case, her condition was ignored as it got worse. I repeatedly had to ask for advice or a referral from a Clinic Doctor whose job it was to ignore it. The Neurologists referrals took almost another Year as her symptoms got worse. I stupidly thought a diagnosis might have postponed the Nursing Home for a while at lest, bu the System made it worse. they know exactly how to get he most Money out of Medicare. She and all the others were just commodities.

  25. Zyp Czyk at 9:57 am

    This is an outrage. They are basically saying:

    “You only THINK you’re in pain, but you’re actually not.”

    I’ve been anticipating this since the whole opioid war started because it’s the logical endpoint of all the resistance to believing a patient’s report of pain. Now the doctor will decide our pain and which medications work, while we ourselves are left out of the discussion (unless we agree with them, of course).

    We will be told what our symptoms are and we will be told how we feel, not asked.

    I’m afraid this most disrespectful and dismissive attitude towards pain will become the norm. If I ever have emergency surgery and then no pain relievers, I too will call the police and demand to be rescued from this legal form of torture.

  26. Carla Cheshire at 8:33 am

    I had much the same experience as your mother. After back surgery I had a morphine pump and was doing well with my pain under control. The second day it was abruptly pulled and I fell into agony with no one to advocate for me. The doctors and nurses would not listen to me and asked my roommate if she thought I was in pain overnight! She strongly answered yes! Still the pain control was awful. I was administered injections but the schedule was not adhered to as the doctors were too busy. Then when the shifts changed it was like starting all over trying to get someone to help me. After 5 days a pain management physician was called in and under his instructions my pain was finally under control. When you do not have a relative to advocate for you in the hospital setting you are in trouble. My friends tried but they were not listened to as they were not family. It was a scary experience.

  27. Leslie E. Pater at 8:15 am

    I’m appalled by people who aren’t in pain themselves can even have an opinion regarding people who are in pain. And chronic pain, like many of us, is even worse. I personally know an individual who continues to make clsims that ooiods are not needed for pain relief and that there are other medications we should be using. You guessed it, this person is neither a doctor nor a chronic pain sufferer, yet considers herself an expert on opiod pain medications. I used to be on narcotic pain medication when I resided in Marylsnd. When I relocated to Arizona I THOUGHT I would continue to be prescribed my narcotic pain meds. I couldn’t have been more wrong. I was immediately told that I needed to find another medication for my pain. Having, by this time been on opiods for 5 years, I knew other medications just didn’t work. So they began lowering my dosage until after 20 months I was deemed “cured.” What hurt me the most was my fsther not knowing the difference between ADDICTED and DEPENDENT. I fully admit I had a dependence, but NEVER was I an addict. When I confront him with the difference, he says he understands, but if that were true why eould my immediate family all believe I WAS a junkie and that if it wasn’t for him (my fsther) I would still be one. He obviously at least partially believes that what he is saying is true, but that was never the case. Since no longer being on opiods, he now believes that I never did need them and that because I’m no longer on them, my pain must be gone as well. It’s a lost cause that no matter what I say or do, he simply cannot accept that I am telling the truth. His kicker is that if I wasn’t so messed up on drugs, I would know what was really happening. My point is that people who are not in pain will believe ANYTHING the so called “experts” tell them and those of us in pain will be the ones left to face the pain. It is absurd that the people who are not in pain are the ones who are goingvto decide what’s best for us. That is crazy talk and why they can’t see it actually benefits people to attempt to cheat the system and helps people who abuse opiods obtain it.

  28. DAve at 7:34 am

    What’s remarkable, to me, is that people in pain put up with the cruel inconsideration by the health care industry. Their behavior not only often violates their own ethics- but common sense and decency. I will be writing to the ACEP and to Deans of medical schools to condemn their behavior.

  29. MARTHA ARNTSON at 7:12 am

    Chloe, I was astounded when I read your post this morning! I too am appalled at how the CDC, DEA, FDA and every other Governmental entity is encroaching upon how pain is going to be treated now. I feel so badly for your Mother, my Mother-In-Law is 97 years old and living in an assisted living facility. A few months ago she fell in her apartment and smashed her face upon falling. She was transferred to the hospital facility connected to the living center and spent 2 weeks in recovery. While there, my sister-in-law (who is nearby and takes care of things for her), said they were treating her exactly how your mother was treated. I cannot believe these older people who are in true pain from something so horrific are told Tylenol is fine and they don’t need any additional pain medications! My sister-in-law did what you did, she INSISTED her mother get at least a minimum amount of Morphine into her I.V. to keep her comfortable! She had to jump through so many hoops to get the doctor to agree to give her the minimal amount she needed. I am not sure if it’s the new mandates or that they are truly afraid these people will become “addicted” to it? Or is is just they are old, can’t speak for themselves coherently at times, and rely upon staff when there are no family members to speak for them. I fear at some point when I become older (I am 59) that someone would speak for me if I needed medication like that for something like surgery or a fall. A hip break is incredibly painful, I know from experience with my mother-in-law breaking hers before she was sent to the Assisted Living Center around 2013. Luckily my sister-in-law takes good care of her and watches over everything they do for her (or not). It has been a long road with her condition, which is deteriorating, (she has Alzheimer’s disease), with little or no history of any other medical conditions. I thank you so much for sharing your story and I hope more people will comment on this situation which is totally out of hand and getting worse as the new “Guidelines” are being introduced into our hospitals/pain management clinics and even Emergency Rooms! (I used to be quite sure they would give you something if you went to the E.R. with a broken hip?) Now, I am not so sure that they would just give you Tylenol and send you home. Sad days coming for all of us who suffer from anything other than a typical one time headache!

  30. Angel at 5:21 am

    The answer to why certain doctors are advocating counter to common sense and care is money. Money money money with a little bit of self importance and recognition thrown in. I’ve watched a certain dr in my state of WA receive all sorts of money and fame for radically advocating against pain treatment. The suffering is real and much pain can tangibly be measured. Until the politics and money is taken out of medical care and it’s no longer agenda driven nothing will change.

  31. Jeff Shelton at 3:48 am

    I’ve had the same problem. I had to walk out of a Drs office to keep from hitting him. After a fall I was in so much pain I would be sick to my stomach. A Dr refused to Do xrays or anything telling me I was obese to lose weight.
    A New. Dr did mri and found 5 herniated discs and started aggressive treatment. Epidural injections pt and meds. It gave me my life back. For 6 years until another fall sent things over the top. But I know without Dr. Becks care and listening I wouldn’t be Alive now. I couldn’t live with that pain.