Treat the Patient, Not the Label

Treat the Patient, Not the Label

By Terri Lewis, PhD

Terri Lewis, PhD is a frequent contributor to the National Pain Report. She is a daughter and a mother who has witnessed chronic pain first hand. She currently serves as an Assistant Professor, Rehabilitation Counseling and International Programs Consultant at National Changhua University of Education in Taiwan. She originally published this column on Linkedin on January 17.

The language we use frames what the public thinks about substance use and recovery. It affects how individuals think about themselves and their own ability to effect their own health care decisions. But most importantly, the misapplication of  terminology to distinguish persons with chronic pain from persons who are addicted, perpetuates stigma for both populations of healthcare consumers and interferes with treatment. Neither group should have to fight the additional battle of negative stereotyping because of their health characteristics or their needs for specific medication and treatment protocols.

Persons who suffer with chronic and intractable pain face widespread misunderstanding of the difference between physical dependence on a the use of schedule II narcotics used to treat their chronic health conditions, and addiction to drugs of any class which are prescribed inappropriately or used for nonmedical purposes. One is not the equivalent of the other.

Many – the general public, patients, physicians, and policy wonks – fear that anyone taking opioid medications on a long-term basis will become addicted. That said, addiction may lead to behaviors associated with overdose, suicide, or other aberrations of socially acceptable personal behavior. The same is true for persons with chronic pain who are left unsupported within their community. Physicians who prescribe for complex patients are being stigmatized by their peers as ‘aberrant prescribers.’   Many physicians, finding little support among their peers, are seizing on new state laws for regulation of pain management to  deny care for persons with addiction or chronic pain disorders.

This misapplication of the science that surrounds the treatment of consumers who require controlled substances is leading to the political revision of treatment protocols that fail the test of scientific scrutiny and medical practice.  Increasingly, substitute treatment methods that are potentially more harmful than treatment with controlled substances are being pushed out to chronic pain patients even as addiction has become a flourishing business model.

No matter the diagnosis, patients with legitimate diagnoses who have been on successful long term medication protocols are being relabeled as “drug abusers or misusers” and stigmatized because of their prolonged use of opioid medications or other schedule II drugs such as Adderall. Newly injured patients are being labeled as “drug seekers” and forced back into fail first protocols that may lead to misdiagnosis, under treatment, and increase the potential for serious injury. This is particularly true if we allow treatment for chronic pain to be delivered through an addiction model.  There is no reason why we should not be able to differentiate a course of action that is appropriate for the patient.

It is important to review the terms in question.

Substance use disorder is a term (DSM V-TR) that refers to the misuse of ten classes of drugs that are known to be harmful when abused: Alcohol; caffeine; cannabis; hallucinogens; inhalants; opioids; sedatives, hypnotics and anxiolytics; stimulants; tobacco; other unknown substances. Clearly, many of these are utilized by healthy persons every day and even periodically abused. Their use becomes classed as a disorder when two or more of these conditions are identified within a twelve month period – pathological changes in daily behavior, the use of the drug induces intoxication, creates conditions of withdrawal, or induces changes in mental status.  The essential feature of this definition is the inducement of a reversible substance specific syndrome due to ingestion of the substance in question which creates problematic behaviors.

Opioid abuse is a form of substance use disorder that involves the use of any opiate containing substance under conditions which create problematic, pathological changes in daily behavior and changes in mental status. This is characterized by impaired control (the use of the substance in amounts greater than prescribed), the inability to easily reduce or terminate the use of the drug, supplementing with drugs that belong to others, or the use of the drug to treat unrelated conditions. This should not be confused with behaviors that result from underprescribing or pseudoaddiction, described below.

Opioid use disorder is the use of opioids beyond conditions associated with a specific medical necessity or for nonmedical purposes. Opioid use disorder is most closely associated with behaviors that include poor control over the use of the drug and preoccupation with finding a source of supply to serve purposes that are not associated with medical necessity. Termination of the use of opioids has the potential to result in a return to normal physical and mental status within a period of 30 – 60 days. Persons who require the long term use of opioids to reduce pain levels are specifically excluded from this definition by the DSM-V-TR.

Addiction is a neurobiological brain disease that has genetic, psychosocial, and environmental factors. Withdrawal of the drug in question may not result in a return to normal behavior.  Relapse is frequent and lifetime supports may be required.  It is characterized by one or more of the following behaviors:

  • Poor control over drug use
  • Compulsive drug use
  • Continued use of a drug despite physical, mental and/or social harm
  • A craving for the drug

Chronic pain is pain that results from a discrete event or illness, that lasts for more than 90 days without resolution.   It ranges from mild to severe and results from more than 200 distinct etiologies that may require complex diagnostic workups. Intractable pain is distinguished by detectable and disabling changes to one or multiple organ symptoms that occur as the result of prolonged, under treated chronic pain or disease processes. Consumer reports of ‘pain’ often results in failure to address underlying conditions that are pain generators. It is not unusual for patients to deal with symptoms that take years to diagnose – a problem which leads to mistreatment, undertreatment, and misdiagnosis, often with secondary harms. There is virtually no functional difference between noncancer and cancer pain. Using this criteria to determine treatment is less and less useful given the state of our understandings about the origins and impact of pain.

Physical dependence is the body’s adaptation to a particular drug. In other words, the individual’s body gets used to receiving regular doses of a certain medication provided for a specific and legitimate purpose. When the medication is abruptly stopped or the dosage is reduced too quickly, the person will experience withdrawal symptoms. Importantly, the purpose for which the drug is prescribed is still present, symptomatic and requires treatment. Although we tend to think of opioids when we talk about physical dependence and withdrawal, a number of other drugs not associated with addiction can also result in physical dependence (i.e., antidepressants, beta blockers, corticosteroids, etc.) and can trigger unpleasant withdrawal symptoms when stopped abruptly.

Tolerance is a condition that occurs when the body adapts or gets used to a particular medication, lessening its effectiveness. When that happens, it is necessary to either increase the dosage, switch to another type of medication in order to maintain pain relief, or employ an adjunctive therapy. Tolerance may be mistaken for pseudoaddiction when illness progression results in increased symptom expression and under treatment.

Pseudoaddiction is a term used to describe patient behaviors that may occur when their pain is not being treated adequately. Patients who are desperate for pain relief may watch the clock until time for their next medication dose and do other things that would normally be considered “drug seeking” behaviors, such as taking medications not prescribed to them, taking illegal drugs, or using deception to obtain medications. The difference between pseudoaddiction and true addiction is that the behaviors stop when the patient’s pain is effectively treated. “Catastrophizing” or magnification of symptoms in order to communicate the impact of unrelieved symptoms on the individual is often seen in persons who are under treated.

Red flags are the characteristics of the physician-patient interaction we have come to associate with deviance and stigma. Distinguishing drug seeking behaviors associated with addiction from the behaviors resulting from untreatment may be difficult for the physician who doesn’t fully understand the difference in the first place. Drug seeking behaviors may result from undertreatment and conditions that are comorbid with chronic pain. These behaviors include: personal attributes or characteristics such as sex or gender, age, insurance status, and financial status; failure to fulfill social obligations at school, work or home; onset of interpersonal problems that include impairment of social functions; risk taking behaviors associated with use or acquisition of drugs; and malingering – the purposeful production of falsely or grossly exaggerated complaints with the goal of receiving some kind of reward or secondary gain that includes money, insurance settlement, drugs, the avoidance of punishment, work, jury duty, the military or some other kind of service. Sometimes, just the use of an injury fund such as workman’s compensation or Medicaid serves as a red flag to physicians who believe that the use of these injury funds are somehow related to secondary gain. Increasingly, the red flags used to deny treatment also include – the distance a person must travel to receive care; whether or not they travel with others who can assist them; whether they contact their physician between appointments; and whether they have some understanding of their care needs and can tell their physician what they need based on prior experience.

Comorbidities are conditions that occur together. There are known conditions associated with addiction or chronic pain that may lead us away from appropriate treatment decisions when they are inappropriately labeled as red flags ormalingering. Changes in mental status or personal social behavior may lead physicians to conclude that behaviors are red flags when in fact they are indicators of associated treatment needs that occur consistently with both addiction or chronic pain. These include depression, anxiety, post traumatic stress disorder (PTSD), reduction in activities of daily living, and social withdrawal, and catastrophizing. It is not unusual for physicians to label persons who have both chronic pain and undiagnosed comorbidities as ‘malingerers’ who are looking for some form of secondary gain. This may also lead physicians to fail to look for other causations for patient complaints, leading in turn to overlooking illnesses that may co-occur with the illness that precipitated the chronic pain in the first place. Co-morbid conditions remain and continue to exert their effects even as drug protocols for substance abuse wind down the use of narcotics. Unidentified comorbidities can result in the patient being labeled as nonadherent, noncompliant, or difficult.

Stigma refers to the negative attitudes expressed by members of the community, including healthcare professionals, that result in discrimination and devaluation of the individual solely because of their characteristics. Consumers do not have protection from the personal belief systems of their treating providers. Physicians may have difficulty distinguishing consumer needs due to the training, experience and conditions of operation.

Inappropriate use of language leads our thinking and expectations and can negatively impact the way society perceives both addiction and chronic pain. Insistence on the appropriate use of language to treat both addiction and chronic pain is important. A recent publication (NEJM, January 14, 2016) confirms that persons with chronic pain who are appropriate selected into treatment and supported by physicians are the least likely to engage in risky behaviors associated with substance abuse disorders. This raises the issue of gatekeeping by physicians who are poorly informed about the differences between treating addiction versus treatment of chronic pain. This is particularly important a the primary care level where labels are first employed and where the consumer is most likely to present in a crisis state.

Associating health care with negative terms that label individuals as deviant, or that deprives them of individual or personal qualities and identity is a critical issue for patient selection into treatment. Labels cause us to explain away illness symptoms through beliefs that have nothing to do with the facts of the person. Assigning ‘marks’ and ‘red flags’ we employ labels to deny the person’s real conditions of daily life. Physicians are conditioned to believe that ‘catastrophizing’ is an aberrant behavior associated with drug seeking rather than understanding that it is a plea to be listened to and taken seriously when you are undertreated for pain. Pain attributed to ‘somatoform disorder’ becomes the ‘mark’ of mental illness rather than an indication that the physician has failed to pursue a diagnosis because they have misinterpreted your symptoms by exercising their own faulty beliefs. A person who drives more than 50 miles to see a physician may not have a provider who will take their insurance or who will not accept cash in the face of no insurance at all.

Stigma causes us to confuse the characteristics of the person with the characteristics of the illness or injury. It is harmful, distressing, and marginalizing to the individuals, groups, and populations who bear the burden of negative labels. It also results in misdiagnosis, wrong diagnosis and under treatment using illegitimate interventions. At all levels of this discussion, we must employ safeguards to protect patients and their treatment providers from the inappropriate use of stigmatizing language and decisions which deny appropriate care.

Now more than ever, we must resist the use of the inappropriate criteria to determine how we will deliver healthcare that prevents addiction and reduces disability. We must address the long term care needs of consumers who will require complex care for the balance of their days.

For additional and useful information about this discussion, see:

Nick Lessa’s DSM V Update on Slideshare at:http://www.slideshare.net/chat2recovery/dsm-5-update-p-p-revision?qid=cbdae9a4-d853-4ae7-8e19-9772502a8e50&v=default&b=&from_search=1

Compton, et al (2016, January 14). Relationship between nonmedical prescription-opioid use and heroin use. N Engl J Med 2016: 374: 154-163 DOI: 10.1056/NEJMra1508490

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Authored by: Terri A Lewis, PhD.

There are 11 comments for this article
  1. Kurt W.G. Matthies at 9:35 am

    Thanks Terri for an excellent and informative article.

    I wish more medical school curricula contained these essential characteristics of pain management and the treatment of chronic pain with opioid-based medication.

    I believe that pain advocates and advocacy groups have an imperative to teach the American public about these facts.

    Thank you again for stating these fundamentals with clarity.

  2. Dave at 6:55 am

    This article points to the need for critical pain studies and for people in pain to have more direct access to the resources they need. Government, the DEA, insurers, pain specialists, addiction specialists, mainstream doctors and others all wish to put their own spin on people in pain and pain care research, assessment and treatment. Their spin often reflects a bias and attempt at manipulating things in their favor- and often to the disadvantage of people in pain, who, unlike, government and the health care industry have no official power to put a spin on pain care. So it is clear to see the spin disadvantages people in pain and leads to confusion, misunderstandings and great distance between people in pain and the pain care system. Thisis why I have advocated for people in pain to have a greater voice and to be at the center of their care. The spin relegates people in pain to third class citizens.
    If people in pain would call for direct access to sufficient resources needed to prevent,assess, treat, cure and manage their pain- then the “spin doctors” wouldn’t be able to dominate and disadvantage people in pain as they are doing now.

  3. Carey Schaeffer at 5:40 am

    Hello. I am a 46 yr old female who has suffered from undiagnosed chronic pain for 5 yrs. As of last year, I finally got a diagnosis. I can’t stress enough how important it is for the doctors to learn more about a patient who suffers from chronic pain before labeling them as a “drug seeker”. I encourage any person whom is in chronic pain to read all the doctors notes, patient summary, all records very carefully. If you have never been a drug user or an alcoholic, and you find out that the doctors have written documentation of a drug seeking personality or habitual drug abuse, alcohol abuse, etc…, then challenge the reasoning as to why it is documented. I have had to do this on several occasions. I have one glass of wine a year at Christmas. Yet my urologist had alcohol abuse on my report online. (Patient summary) I was shocked and mad. I calmly wrote the Dr and asked why this was stated on my report. He corrected it immediately. It was a simple “click of the mouse” error from the Secretary. He wrote an apology and had the report corrected. That “simple mistake” could have been a red flag to any other Dr that I would visit in the future. Drug seeker stigma is almost impossible to remove as it is so widely misdiagnosed. Good luck to all my fellow chronic pain sufferers. Sincerely, Fibromyalgia, RSD/ CRPS, cervical and Spinal Stenosis, IBS with chronic abdominal pain from nerve damage, undiagnosed autoimmune disease, etc… aka SURVIVOR.

  4. BL at 10:00 pm

    Dr. Lewis, it might be helpful if you could do an article on the different states that have these new laws with a link to the actual laws. I know that often drs will tell patients that they can’t prescribe pain meds due to new laws, when in reality there are no new laws preventing them from prescribing. I’ve also seen a lot of confusion in states where state laws say in order for a clinic to advertise as a Pain Management Clinic, a dr must own at least 51% of the clininc AND have a current medical license to practice in that state, AND their speciality must be in Pain Management or Anesthesiology. A lot of people misunderstand this and think that it means that only pain managment drs can do pain management and write pain meds.

  5. Jeremy Goodwin, MS, MD at 1:49 pm

    This is really very good in separating the terms that most clinician’s do not know, and hence contributes to ignorance-based biases against patient with chronic pain. Such attitudes are truly widespread to the point where legitimate patients in need of care for pain are being turned away as are legitimate patients with addiction with or without pain. There is much racial and ethnic disparity of care too. It is inexcusable and even sneaky. Patients are screened for pain medication and then told that the practice is full when it isn’t. Medical boards and other authorities are confusing issues and lumping all such patients together under a single negatively rained upon umbrella. That hurts everyone and clinicians are refusing to educate themselves as a weak excuse for not being able to take care of such patients. The authorities using misguided and misinterpreted literature are adding fuel to the fire. It must stop!

  6. Terri Lewis at 12:59 pm

    This post has been among the most strongly responded to of those that I have written on this topic. In 24 hours the post has been viewed more than 1300 times and is being shared by health professionals across the world. Clearly people are hungry for information that lends some definition to the public conversation. I am grateful that this post is serving its’ intended purpose – that of inserting clarification into a very unclear topic. I welcome your feedback and will continue to look for opportunities to make sense out of things that don’t make sense.

  7. Scott michaels at 10:30 am

    tell her you need to talk, dress nice for your appt. show her where it hurts and tell her its not enough, please give me stronger or more medication so so you can be more productive. explain that youve been following the CDC GUIDELINES PROCESS, THEY EVEN SAID PCP SHOULD NOT MAKE ANY CHANGES AT THIS TIME. THEY ARE REDOING THE WHOLE THING BECAUSE THEY ARE FINALLY REALIZING THAT THE PAIN PATIENTS AROUND THE COUNTRY HAVE TO BE INVOLVED IN THE PROCESS. EVEN THOUGH PEOPLE HAVE MISUSED,SAY I DONT! LET JER K OW YOU HAVE FRIENDS AND FAMILY THAT ALWAYS OFFER YOU THEIRS BUT ALWAYS SAY NO BECAUSE I DONT WANT TO BREAK MY CONTRACT AND LOOSE YOU AS A DOCTOR. PLEASE HELP ME….THATS WHAT WORKED FOR ME. AND IT WAS THE TRUTH!

  8. Donna at 7:52 am

    How do we open dialogue with our doctors about these very things? I fall into many of the categories listed: I travel over 50 miles to see a primary doctor because no one would take me as a patient since I take pain medicines, my pain doctor is drastically under-treating me. She refuses to have a discussion with me, as she speaks over me while she backs her way out of the door. She never sits down, but prefers to stand over me with her arms crossed. When did the patient stop being a part of the Healthcare team? How do we regain it?

  9. Scott michaels at 6:58 am

    VERY WELL WRITTEN. I ENCOURAGE EVERYBODY TO SUTUDY THIS ARTICLE OR EVEN PRINT IT AND BRING IT TO YOUR DOCTOR, ESPECIALLLY OF THEY ARE HA E DIFFICULTY GETTING PROPER MEDICAL TREATMENT.
    IT SAYS IN PAIN ENGLISH WHAT WE ALL KNOW.IF YOURE IN CHRONIC LONG TERM PAIN AND HAVE BEEN TAKING YOUR MEDICATIONS AS DIRECTED AND THE ONLY EFFECT YOU RECIEVE IS A GREAT DECREASE OF PAIN.
    IF YOU FIND YOUSELF TAKING EXTRA PILLS AND YOU ARE OUR BEFORE THE END OF THE MONTH, YOU EITHER HAVE TO TELL YOUR DOCTOR THE DOSAGE IS NOT STRONG ENOUGH AND ASK HIM OR HER TO PLEASE WORK WITH YOU. IF YOU ARE ON A HOGH DOSE ALDREADY YOU HAVE BECOME TOLERANT AND NEED TO SWITCH TO A DIFFERENT but SAME STRENGTH medication. If you feel thos is a problem, HAVE A FRIEND OR FAMILY MEMBER GIVE YOU YOUR MEDICATION ON A DAILY OR WEEKLY BASIS. MALE SURE YOU DONT HAVE ACCESS TO THE MEDICATION. THIS WILL GET YOU BACK ON SCHEDULE AND IN CONTROL. HOWEVER, IF THE PROBLEM OF RUNNING OUT EARLY HAS BECOME A SERIOUS ISSUE, YOU HAVE A PROBLEM AND NEED HELP, BUT BE CAREFUL OF HOW MUCH INFO YOU GIVE YOUR DOCTOR. YOU MAY NEED TO GO TO REHAB IN ORDER TO GET OFF THE MEDICATION AND START OVER, THOS TIME, DO NOT ALLOW YOUSELF TO HAVE CONTROL OF YOUR MEDICATION, LET SOMEBODY THAT CARES FOR YOU CONTROL IT. uNFORTUNATELY YOUR IN terrible pain, AND IF YOU TELL YOUR DOCTOR YOUR OUT OF CONTROL THEY WO2LL DROP YOU AND YOU MAY NEVER GET THE MEDICATION YOU NEED. THESE ARE DANGEROUS DRUGS IF NOT TAKEN CORRECTLY. YOU MIST BE HONEST WITH YOURSELF AND ASK ARE YOU TAKING IT BECAUSE YOUR IN PAIN OR JUST BECAUSE YOU HAVE IT AND ITS BECOME A PART OF YOUR EVERYDAY SCHEDULE. YOU SHOULD ALWAYS TRY TO TAKE LESS IF YOU CAN, THIS WAY ON THOSE COLD STORMY DAYS WHAEN FOR SOME REASON YOUR PAIN IS MUCH WORSE THEN USUAL YOU CAN TAKE 1 EXTRA FOR THE DAY WITHOUT RUNNING OUT AT THE END OF MONTH.
    THIS IS NOT MEDICAL ADVICE, THEY ARE JUST REMARKS AND SUGGESTIONS THAT I HAVE GATHERED FROM PAIN PATIENTS I KNOW AS FRIENDS OR JUST HAVE SPOKEN TO ABOUT THIER LIFE ON PAIN MEDICATION. GOOD LUCK

  10. Dave at 6:56 am

    Because the illness, and not the person, is most salient to health practitioners- the person is reduced to being a label or a diagnosis, and nothing more. In addition, there is a diagnostic bias- that the diagnosis is real and somewhat permanent and unchanging. This is a problem for a diagnosis is a shorthand for symptoms that a health providers reduces to a label. In addition, other symptoms may be ignored as irrelevant. So what is looked for, in terms of helping someone becomes conflated as being more important then what isn’t looked for. SO the whole process of diagnosing and labeling is flawed and detrimental to some degree.
    Upon being diagnosed, people tend to believe the diagnosis is a fixed part of their identity-and for some a moral weakness, failure, punishment, curse-or something that cannot be changed.
    In addition, pain is not suffering. Are we diagnosing or treating pain and or suffering when someone is labeled with chronic daily headaches?
    And of course, there is the problems of misdiagnosis and overdiagnosis. I recall in the 1960’s doctors didn’t want to tell some people they had cancer- they believed telling someone would make them worry or panic. Nowadays medicine is quick to say you have hypercholesterolemia or high blood pressure. It is clear to me, that nowadays the diagnosis is used as part of making “patients” subservient and compliant. So the diagnostic process, in my opinion, needs to be reconsidered in light of a more humane treatment philosophy for people who have pain.