The Other Victims of the Opioid Epidemic

The Other Victims of the Opioid Epidemic

I’d seen Jerry in pain before, but never like this. He lay prostrate on the gurney in the emergency department, his hands clenched in silent prayer. I laid an apologetic hand on his shoulder and told him we would do what we could to help. Then I logged in to the bedside computer to order his pain medication.

When I clicked the “sign” button, a message appeared on the screen.

“This patient has a documented history of substance misuse. Are you sure you want to order this medication?” Two options appeared below the query: “Yes, continue with this order” and “No, cancel this order.”

It was true, of course. Jerry was the first to admit that he had used cocaine in the past, before his cancer diagnosis. In fact, it was one of the first things he told me when we met in the palliative medicine clinic, shortly after his escalating back and abdominal pain led to a diagnosis of widely metastatic cancer. During the same appointment, he told me how opposed he was to using any sort of controlled substance for his pain. Over the next few months, he submitted gamely to any nonopioid therapy I could offer, from nerve blocks to adjuvant analgesics to reiki and massage. Finally, when the pain became so bad that he couldn’t travel for his chemotherapy infusions, he agreed to start an opioid.

Jerry knew that he was dying. He hoped that the chemotherapy would allow him a little more time with his young daughter and teenage son. But each infusion left him weaker and more debilitated, and his staging imaging did not offer good news. The tumor spread rapidly, threading its way through his liver, lungs, and spine. As his tumor burden increased, so did his pain, and he required increasing doses of opioids just to get out of bed. We both knew that time was short.

His progressive debility, combined with side effects of chemotherapy, meant that Jerry had to come in to the hospital a lot. He hated it. For Jerry, the hospital meant repeated questions about his past, looks of disbelief when he described his home opioid requirements, assumptions about why he was asking for so much medication, and long nights of undertreated pain. When he’d arrived at the hospital with vomiting the previous night, he’d been given doses of intravenous medications that were only a fraction of the dose of the oral equivalent he’d been taking at home. He’d spent the night in escalating pain, so that by morning he was reduced to the mute agony in which I found him.

I clicked “Yes, continue with this order” and went to find his nurse.

She was understandably apprehensive about the dose I had ordered; anyone would be. I agreed that the dose was high, described his home regimen, explained the need for equianalgesic dosing, and agreed to review the dose with our pharmacy staff, but nothing I said seemed to assuage her apprehension. Finally, she voiced her real concern.

“You know he’s an addict,” she said.

I let the silence grow. We were standing outside the open door to his room. I knew he could hear us. “I know he has used cocaine. His tumor is spreading. He has a reason to have pain, and we should try to control it.”

She turned away and spoke loudly enough for both me and Jerry to hear. “This is how we make monsters.”

When I turned back to Jerry’s room, he and I locked eyes. He was weeping.

Jerry is not innocent, nor does he claim to be. His vilification, however, is the result of an all-or-nothing approach to pain management under which the pendulum has swung from one unsustainable end of the spectrum to the other in the past two decades.

Early in my training, the nursing station on our main hospital floor was home to a bucket of lapel pins that depicted a lion tamer in circus gear, encouraging us all to “Tame the Pain.” The hospital’s initiative mirrored national campaigns. The American Pain Society supported a campaign to consider pain the “5th Vital Sign” in 1995.1 The Joint Commission’s Standards on Pain Management were released in 2000, and although they never explicitly recommended opioid prescribing, they did include recognition of the right of patients to appropriate assessment and management of pain, as well as incorporation of pain management into health care organizations’ performance measurement and improvement programs.2 Multiple national organizations, as well as vendors of the Hospital Consumer Assessment of Healthcare Providers and Systems survey, fell in line.3 Over time, for many clinicians, opioids became the treatment of choice, regardless of the cause of a patient’s pain or the likelihood that it would respond to therapy.

Now we have swung dangerously close to the other end of the pendulum’s arc. The “opioid epidemic” has captured the attention of lawmakers, the media, and the public. We have placed the blame for the tragic losses of so many lives in so many communities on the drugs themselves rather than on the complex interplay of factors that has led to the current crisis. The role of opioid analgesics has been distorted to the point where the word “oxycodone” uttered in front of a patient in my palliative medicine clinic is met with raised eyebrows, and some patients choose a bedbound existence as they near the end of life rather than risk the possibility of addiction. Many patients with a history of substance misuse who now only want to control their pain face additional challenges — they are subject to discontinuation of their opioid treatment even when they exhibit no behavior suggesting addiction.4 Should the bar for these patients be higher, or should we focus on the uniform application of careful practice standards to everyone?

The opioid epidemic is a national crisis that should not be underestimated. But its solution will require careful thought, consideration, and most important, development of meaningful interventions to improve both pain management and substance-misuse prevention. These interventions should not come at a cost to the epidemic’s other victims — hospice patients who are too afraid to take the medications they need to control their symptoms5; people whose history of substance abuse, no matter how remote, determines whether their pain will be treated; patients like Jerry, who, dying from cancer, his body containing more tumor than anything else, was told he is a monster.

He, too, is a victim of this epidemic.

12 Responses

  1. I have taken this opportunity to share my heartbreaking story in hopes these witch hunting Opiate ill informed skeptics will read and understand that I would have no life without Medically prescribed Opiates by a physicians care and strictly monitored monthly urine and blood test. Please remember that An Opinion Before A Thorough Investigation Is The Epitome Of Ignorance! And that a little more compassion from the Medical Field and its representatives could have saved my beautiful Stepdaughters life. Let me say this! A person who has a addictive personality will abuse anything that helps them feel better. I have taken Oxycontin for 12 years , I have had 20 major surgery’s in 9 years. I have so much physical pain I can not even get out of bed with ouit pain meds and when I run out I run out and just lay in bed praying the Lord relieve me of this horrible condition and I pray God you pain med skeptics never go through what I go through everyday of my life when the only thing you have to do is threaten what help I get, Shame on you! There will always be drug abuse and as the so called war on drugs has failed all this will! All you do is stoke and aid the drug pushers business to knew heights in the Black Market of Heroin while depriving folks as me to this horrible movement! My Stepdaughter committed suicide 4 years ago because of being treated like a drug addict by her family and doctors when all along she suffered from Lupus and Fibro which I believe was brought on by a deadly car crash at 18 , she told me between that which I was being put through and what they were putting her through she was not going to live her life in such a hell brought on by people like you that are on a witch hunt to out law Opiates and pain meds that give us some sort of a life . As a retired Police officer and worked indirectly close to the DEA, you people do not have a clue how thrilled you are making the illegal opiate trade and think of my Late Stepdaughter as you continue on with this 2016 Version of the ( 1940s Propaganda Film named REEFER MADNESS )movement to outlaw opiates! Just like the slaughter of children at Sandy Hook if there would have just been gun laws , my God they were Gun Laws , the guns that murdered all those 20 children were all registered and owned by a school teacher! You fight Drug Addiction in Elementary education by teaching all children the dangers of Booze and Tobacco which if these witch hunters want for us to know the real truth but they do not. I miss my Stepdaughter a so much and some of us will continue on the fight to protect our right to feel better and function without fear of these witch hunters trying to convince us to commit suicide . And they are trying to do exactly THAT!
    The under line real truth is THESE witch hunters would rather us Chronic Pain sufferers commit suicide are and DRINK all the BOOZE we can drink! The Federals legalized it ( ALCOHOL) knowing its a more deadly drug than Strychnine. And just because the DEA has miserably failed with their witch hunt type movement on drugs why do they deprive us sick people of our Constitutional Rights to be Happy in that pursuit of with Professional Physicians to take meds that give us relief of this horrible malady of Chronic Pain ! May God have mercy on their miserable souls they that seek to destroy us Chronic Pain Sufferers only and little hope of temporary relief of this horrible sickness.

    • Would u testify to your aweful experience in a court of law????mary

    • What don’t you talk about your son who is in the cemetary and the 2 other children you have that have nothing to do with you. Your are an idiot and a addict. You screwed their lives up. You are just an enabler. Still crazy after all these years.

      • Why don’t you go FUCK YOURSELF, you chicken shit piece of crap? I see you are still an IDIOT after all these years ! Also an opinion before a thorough investigation is the Epitome of stupidity! And knowing how ignorant you are

      • Wow,,,anonymous,,your arrogance is outright cruel..U make it sound like,,anyone who is in physical pain or has relatives in physical pain due to a medical condition should be FORCED,,FORCED,, to endure their physical pain,,,If u got past yourself,,and actual acted like a normal human,,any normal human being would want their forced physical pain lessen’d or stopped.Any NORMAL parent would want their children in less physical pain.If that means medicines,,to stop their physical pain soo be it,,The big elephant in the room is ,,why do u even think u have the right to decide for this man,or any human being how much forced physical pain they are too FORCIBLE endure,,when the truth/fact is no-one has that right to literaly torture another human,,for it is factually impossible for anyone to physically feel the physical pain of another..Soo why,,,,,do u think u have the right to torture other humans In physical pain by u thinking u have tis right to decide if we should have medicine to lessen physical pain??? Perhaps your arrogance is truly bigotry against anyone who takes a medicine designed to lessen physical pain…If u get over yourself,,maybe u would acknowledge,,no-one has the right to torture the medically ill literally to death,,as they did to this man daughter….!!!!!!!!!

        Mr.Swanson,,I am very sorry,,our humanity,,,our doctors failed your daughter,allowing bigotry about a medicine to destroy their own humanity,,,,We are trying to change all this,,truly,,,we are,,,May she finally rest in no physical pain now,,maryw

        • And the truth is for this IDIOT and I know it come from an estranged what was a family member and this is a TESTIMENT of Sissy’s Story and for the record for this wayward piece of shit who was a relative ,use to be a family member! Yes my youngest Son is in the cemetery and the reason I do not write of him is at the request of my Grandsons Mother ,she ask me not to write of his death because in an Alcoholic Blackout my Son took his own life and for my Daughter she had blamed me but not like you I prayed for my God to soften her heart and He did just that and I thank my God everyday that He my God is not your God! And I forgive you and pray for you daily but as all Mentally Sick People if they do not reach out for Him he loves you enough to let you choose like that BAFFOON you voted for you choose HATE over God and for that is the reason my Son took his life ( ITS CALLED RESENTMENT )

        • Yes Mary , I would and do testify to all , as you see the most abuse comes from Drs and Family and it was shit like this that Sissy had to die!

  2. I submitted the following comment to NEMJ

    I am a technically trained non-physician advocate for chronic pain patients, with 20 years of experience. I support over 25,000 members of 30+ Facebook groups.

    From thousands of interactions with patients in agony, I am convinced of an immediate need for correction of conditions highlighted here. The March 2016 CDC “guidelines” on prescription of opioid analgesics in chronic pain must be withdrawn for major rewrite. These guidelines were biased against opioids by cherry-picking research and ignoring of thousands of critical comments by medical professionals and patients alike. The guidelines are scientifically in error, egregiously incomplete and outright dangerous.

    Among many fundamental mistakes incorporated into this document, an arbitrary limitation on MMED was declared from no supporting data whatever. Millions of patients are hyper-metabolizers or poor metabolizers of opioids. But you don’t see that in the guidelines.

    I have read stories from hundreds of patients arbitrarily forced to taper down or off medications that have given them function for years. Time to STOP the war against pain patients.

  3. This is so heartbreaking And to be called out as an addict “monster”.
    I loved how you wrote, “Now we have swung dangerously close to the other end of the pendulum’s arc.” It’s so true! Why does it have to be so extreme?!
    We all know nothing is black and white. There are always grey areas to consider.
    Pain itself is the evil monster. The problem is convincing others who have never had to deal with unbearable pain levels.

    Lisa Davis Budzinski

    • It’s called BIGOTRY on a BIBLICAL SCALE! No FASCISM or RACISM with those lying THUGS that have with the help of the Russian Communist K.G.B. with un thinkable results which I do not believe this America we once knew is going such betrayel will not survive ! God help us!And now comparing legitimate Chronic Pain Sufferers with Heroin Addicts as did The Nazi Propaganda Machine sought to encourage the hatred of Jews, Gays , African Americans, and The Mentally Challenged , Chronically Ill and etc. . It portrayed them as the enemy, guilty of betraying Germany from within. The Nazi propaganda lying machine blamed all of it on the Jews for starting the war and demanded a solution to save Germany and the rest of the world from destruction. The war shifted Nazi anti-Jewish policy from expulsion to murder. The Nazis used propaganda to make this change in policy appear justifiable. As now Adolph the second calling Refugees nothing but animals, Murderers, Rapist all for DEHUMANIZING the populace as The Nazi’s did! FOLK’S , AMERICA HAS AND IS TAKING A VERY ! VERY ! DARK PATH! America has lost it’s way. What scares me is not that Russian Mole Fascist Trump but 1/3 of this country including these so called Holy Roller Evangelical Bigots are supporting this horrible dark path to full blown BIGOTRY!

  4. I am heartbroken by the judgment, indifference, and outright cruelty that exists toward a suffering human being. It is scary and sad to know that the stigma of our past actions can be held against us for life, no matter what circumstances exist now.

    I recently attended a health insurance seminar. When the rep discussed prescription coverage, she repeatedly referred to
    ” addictionopioids.” That is not a typo. It was one big, bad word which was clearly frowned upon by this insurer. I wouldn’t dare say I needed to use this abhorrent substance. I might be labeled for life.

    This is indeed a time of extremes, where all common sense, reason, and compassion seem to have vanished.

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