Patients’ Experience With Opioid Tapering

Patients’ Experience With Opioid Tapering: A Conceptual Model With Recommendations for Clinicians – free full-text article from Journal of Pain – Feb 2019

I found this an interesting read because it describes different ideas and experiences with tapering. I’m encouraged because it’s only a part of a larger study collecting data on the outcomes of opioid tapers, data we desperately need to hold the CDC accountable for the misery and deaths its guideline caused.

Abstract:

Clinical guidelines discourage prescribing opioids for chronic pain, but give minimal advice about how to discuss opioid tapering with patients.

We conducted focus groups and interviews involving 21 adults with chronic back or neck pain in different stages of opioid tapering.  

Transcripts were qualitatively analyzed to

  • characterize patients’ tapering experiences,
  • build a conceptual model of these experiences, and
  • identify strategies for promoting productive discussions of opioid tapering.

Analyses revealed 3 major themes.

First, owing to dynamic changes in patients’ social relationships, emotional state, and health status, patients’ pain and their perceived need for opioids fluctuate daily; this finding may conflict with recommendations to taper by a certain amount each month.

Second, tapering requires substantial patient effort across multiple domains of patients’ everyday lives; patients discuss this effort superficially, if at all, with clinicians.

Third, patients use a variety of strategies to manage the tapering process (eg, keeping an opioid stash, timing opioid consumption based on planned activities).

Perspective

Chronic pain is among the most common complaints in primary care, yet patients and clinicians consistently report that negotiating treatment plans for chronic pain is often mutually frustrating and unproductive, especially when treatment involves opioid analgesics.

New clinical guidelines, such as those published by the US Centers for Disease Control and Prevention and Department of Veterans Affairs, discourage use of long-term opioids for chronic pain and recommend tapering patients either off opioids or to daily doses <90 mg morphine equivalents.

This was only intended to apply to PCPs and patients new to opioids, but no one is paying any attention to that caveat.

Clinical guidelines provide general recommendations about opioid tapering rates (eg, a 10–20% dose reduction every 2–4 weeks), but offer few concrete suggestions for how to discuss tapering with patients; the US Centers for Disease Control and Prevention guidelines merely advise clinicians to “work with patients to taper opioids.”

They are full of advice for doctors about how to take pain relief away from patients but offer nothing to deal with the fallout from the forced tapering process.

Such strategies are more likely to be patient centered if they are grounded in an understanding of how patients experience opioid tapering.

This study sought to gain insight into patient experiences with opioid tapering by conducting focus groups and individual interviews with patients suffering from chronic neck and/or back pain.

We focused on axial musculoskeletal pain because it is the most common homogeneous pain condition for which long-term opioids are typically prescribed and is a leading cause of work-related disability

Generic musculoskeletal “spine pain” is very different from the pain of chronic conditions like fibromyalgia or sickle cell or connective tissue disorders so this may not generalize as well as the authors hoped.

Participants and Recruitment

Participants were adult patients at 13 different primary care clinics within the University of California, Davis, health system located in the greater Sacramento area. Eligible patients were 35 to 85 years old with chronic neck or back pain and were either taking long-term opioids (defined as ≥1 dose per day for ≥3 months) or had taken long-term opioids (≥1 dose per day for ≥3 months) and had tapered down or off within the past year.

This study is part of a larger project approved by the University of California, Davis, Institutional Review Board to collect and share patient stories about opioid tapering. 

This is very promising and I’m glad that at least in California, data is being collected on the outcomes of opioid tapers. This is the only research I’ve heard of to measure the outcome of the CDC guidelines.

An electronic health record screening algorithm was used to identify potentially eligible patients. Study personnel gave primary care clinicians lists of their patients identified by the algorithm and asked clinicians to identify patients who were good candidates for opioid tapering, were in the process of tapering, or had recently finished tapering.

Prior Experience With Tapering

Patients rarely approached opioid tapering as a blank slate.

  • Many recounted prior experiences with tapering, and most had ideas about what tapering meant or might entail.
  • Several patients had tapered down or off opioids more than once.
  • Patients’ ideas about what tapering meant influenced attitudes about tapering and discussions with clinicians.
  • Common synonyms for tapering were “cutting back,” “reducing my medications,” “weaning off,” “going cold turkey,” “detoxing,” and “adjust[ing] down to nothing.”
  • Patients who understood tapering to mean a gradual or partial reduction in opioid medications were generally more receptive to tapering than those who understood it to mean stopping “cold turkey” or stopping opioids completely.

Patient Values and Goals

Patients’ values and goals influenced their attitudes toward opioid tapering. Some patients were willing to attempt tapering because they wanted to take fewer medications. Several patients wanted to taper because they felt that their lives revolved around opioids:

Other patients cited the goal of better health as a motivation for tapering.

This is because we’re always told how “bad” opioids are for us, but if you ask about specific ways in which opioids are so “bad”, you won’t be able to get accurate answers.

These same doctors will then recommend alternatives (gabapentin, antidepressants) that are even more damaging to health.

Most patients mentioned some opioid-related side effects, but side effects alone were rarely sufficient to motivate patients to attempt tapering.

The only serious side effect is constipation, which can be treated in many different ways. All other supposed side-effects are more supposition than fact.

A few patients described making decisions about tapering based on risks versus benefits of long-term opioid use with language similar to the US Centers for Disease Control and Prevention guidelines:

“If [opioids] work for you, what are the negatives? Balance it out. Like I said, if they even got rid of half the pain in my knees, I’d keep taking them.” “I’m kind of an advocate for, if you need them, take them. … If you need them for quality of life, do it.”

Patient Fears

Fear emerged as a uniquely powerful emotion affecting both patients’ willingness to taper and their overall tapering experience.

Most patient fears involved the possibility of worse pain and withdrawal owing to decreased opioids.

For most patients, the prospect of tapering evoked fears involving a mix of pain, withdrawal, and loss of function: “I have that fear that if I stop, things are going to go to hell. I don’t want to be in that situation again.” One patient described inchoate fear after a clinician refused to refill her oxycodone: “I just remember sitting in the doctor’s office and tears were just pouring down my face because I thought, ‘What the hell do I do now? How do I live with this?’”

Fears of addiction and overdose were less prominent than fears of pain and withdrawal.

This is how most pain patients feel: we’re not afraid of the tapering “process” as much as we fear the tapering “result”: the return of our pain.

As 1 patient noted, “I have a lot of doctors say, ‘Aren’t you worried about being addicted to the pain medication?’ My God, I’ve been on it for 25 years. I am obviously addicted to it so that is not a concern.”

Social Relationships, Emotional State, and Health Status

Patients’ social relationships and emotional state frequently influenced their experiences with opioid tapering. With the exception of stories about patient–clinician interactions, most patient stories about tapering emphasized social relationships and emotional dynamics.

Two of the most common dynamics impacting tapering were patients’ ability to fulfill their roles and responsibilities related to their work and family.

For example, one patient deferred tapering until after retirement because he needed opioids to work

The Work of Tapering

Patients repeatedly emphasized that tapering requires planning and sustained effort: “It’s a process, it’s not something that you do one day and it’s gone the next.”

Patients experienced tapering as dynamic because their pain and perceived need for opioids varied from day to day and because their pain was frequently affected (either positively or negatively) by changes in their social relationships and emotional state.

All of the studies involving pain generalize: pain is treated as one monolithic discrete symptom, as though it were constant at the same level from the moment we wake to the moment we sleep again.

I haven’t seen a single study that addresses the variations and fluctuations in our pain.

Tapering requires patients to adjust and recalibrate in response to these changes.

For many, this means giving up most upright activities, like working, caring for self or family, and getting out of the house.

The effort needed to taper spans several interconnected domains:

  • managing activities,
  • managing opioids,
  • managing pain,
  • managing side effects and withdrawal symptoms,
  • managing patient identity, and
  • managing emotions.

Most patients already worked hard to manage pain and opioids before tapering; tapering required patients to try new and different strategies.

The most salient effort during tapering was figuring out how to manage activities necessary to get through the day (eg, working, running errands, helping family). Patients continually adjusted opioid use based on their planned activities.

Tapering often required patients to expend more effort adjusting their habits and opioid consumption to maintain functionality.

If I could maintain my limited functionality without opioids, I’d have tapered myself long ago. I always take the lowest dose I can, but if I want to go grocery shopping or walk the dog, I need some relief from the inevitable pain.

Nearly all patients noted that managing opioids became more difficult as tapering progressed.

In addition to timing opioid consumption around daily activities and contacting clinics for refills, patients expended more energy monitoring their day-to-day opioid supply. Several patients compared managing opioids with having a second or “secret” job.

I’m surprised to see that my own feelings aren’t rare: dealing with chronic pain is a full-time job, juggling pain tolerance and productivity.

Patients had to continually exert self-control to balance their immediate desire for pain relief against their fear of worse pain or withdrawal if they ran out of opioids in the future.

I’m a very lucky patient because my doctor prescribes me the highest dose I need during my worst pain. Most days, I don’t need that much so I can save up spares to use when the pain flares. I’m sure I’m not the only one that does this.

Even patients who realized that their fear of uncontrolled pain was unfounded admitted they had to tolerate greater discomfort to “get by” with fewer opioids.

Calling pain “discomfort” is invalidating, minimizing, and insulting.

They would never say that to someone who had been injured, they’d never ask the dreaded pain level question: “How would you rate your pain from that shattered bone or kidney stone on a scale of 0-10”.

Managing emotions during tapering mostly entailed managing the fears described elsewhere in this article.

One patient noted that having fewer pills heightened her fears of uncontrollable pain, which in turn required her to expend more energy controlling these fears.

Many patients also expressed struggles with their identity, including

  • doubts about self-worth,
  • worry about acceptance by others, and
  • a desire to return to how they were before they started opioids.

How can any pain patient “return to how they were before they started opioids?” Because most chronic pain is progressive, tapering off opioids often means living with a lot more pain and a lot more limitations.

For others, tapering involved accepting pain-related limitations. For many patients, successful tapering required consciously reconstructing their identity.

Some patients associated tapering off opioids with positive changes in their identity, whereas others had little hope for the future owing to their persistent, debilitating pain.

I’m surprised to read such a blunt accurate statement in a scholarly article. So many of us live in dread because we have “little hope for the future owing to their persistent, debilitating pain”.

Communication With Clinicians

Clinicians play a key role in patients’ tapering experience because clinicians are the only legal source of opioids and the primary source of medical treatment for pain.

Patients reported that discussions with clinicians tended to focus on opioid dosing and medically prescribed pain treatments; discussions of patients’ everyday experiences with tapering, their social relationships, and their emotional state were rare

Clinicians’ involvement in and initiation of tapering varied greatly. Some clinicians were minimally involved in tapering decisions (eg, when patients decided, on their own, to quit cold turkey), although nearly all were supportive of patients who wanted to taper.

Discussions about tapering were

  • sometimes initiated by patients,
  • sometimes initiated by clinicians, and
  • sometimes mutually agreed upon.

Patients whose clinicians unilaterally tapered or stopped prescribing opioids expressed a profound sense of loss and betrayal:

“This has been my doctor for almost 20 years and he treated me like a stranger, like nothing.”

And this is what’s driving patients to suicide.

Another patient used similar language:

“I felt like, where did you go? When I attempted suicide, he checked on me daily and he made me sign a contract not to hurt myself and then here he is years later. Where did that loving, caring doctor go? I’m so loyal to you… I always looked to him for comfort and humor and caring and that just wasn’t there. It was just this stranger sitting there.

Patients reported a wide range of experiences with clinicians once tapering started.

First, they expressed the importance of mutual honesty—clinicians being honest with patients, and patients being honest with clinicians and with themselves.

When doctors keep telling patients that “opioids are bad for you”, that’s already a lie.

They might defend themselves by asserting that this is what they were taught, but if they did any research they’d find the information I post on this blog. Doctors are expected to keep up with medical developments, and this attack on pain patients should motivate them to check the evidence, not just accept the mainstream cliche that “opioids are evil”.

Second, these patients described clinicians who took the time to learn about their needs, build mutual trust, and devise individualized tapering plans.

Several patients noted that simple, open-ended questions such as, “How are the pain medicines working for you?” and, “What problems are you having?” facilitated productive information exchange and signaled that clinicians were not using a one-size-fits-all approach.

It’s exactly this one-size-fits-all approach that dooms patients. Very little about chronic pain is in any way “standard”, not is anyone’s reaction to opioids “standard”. Why then, would tapering be standardized?

Patients who feel they are being treated this way fall into despair and hopelessness because they know their doctors are not tuned in to their struggle against suffering.

Finally, patients who reported positive experiences received anticipatory guidance about tapering and described clinicians willing to adjust tapering plans based on patients’ experience or in response to changes in patients’ emotional state or health status

In contrast, patients reporting negative interactions with clinicians felt clinicians were not entirely honest about their reasons for tapering (eg, clinicians were motivated by institutional anti-opioid pressures rather than patients’ best interests), did not listen to patients or individualize tapering plans, or were inflexible once tapering started.

Several patients reported experiences with clinicians who they perceived as focused on tapering opioids rather than treating pain.

This is extremely common these days as more and more administrative rules are forced onto medical practice.

When you say you want to go down and get off of it, I’m making an initiative. He’s not asking me to, and yet when I say, “Well, maybe I shouldn’t have gone all the way off. At least maybe I should have something as a backup for when it’s really, really bad.” He comes back to me and says, “Uh, no, no. Sorry, we don’t go backwards.”

This is the ultimate betrayal: a patient who is dependent on a medication tries to reduce their use of it as an experiment, and for their efforts, they are punished with a permanent reduction that they may never have intended to live with.

Of course, the solution is never to be honest with your doctor. I’m surprised there are still any pain patients who don’t know better when pain management makes their doctors adversaries rather than healers.

Patients explicitly discussed the power differential between patients and clinicians—only clinicians can prescribe (or refuse to prescribe) opioids—when they described negotiating about opioid dosing or the rate of tapering. Patients were often reluctant to challenge clinicians for fear of losing access to other medical services or of being labeled a “drug seeker.”

This “opioid crisis” has destroyed the doctor-patient trust that’s so necessary for medical care. Now we see how doctors never really understood our pain or our dire need for opioids when they’re so willing to force tapers on us.

For several patients, tapering discussions were precipitated by clinician retirement. Other patients noted they had trouble finding primary care clinicians willing to prescribe opioids when they needed to change clinicians.

A few patients considered seeking alternative opioid sources during tapering when their pain or withdrawal was severe.

One patient suffering from withdrawal during tapering accepted unknowingly counterfeit hydrocodone pills from an acquaintance, resulting in hospitalization for overdose

See previous post predicting such harms: Structural Iatrogenesis leading to “Opioid Misuse”

Tapering Strategies

Patients described a wide variety of strategies to navigate opioid tapering. Table 2 lists the strategies discussed in our data.

These strategies fall into 3 general categories:

  • patient initiated,
  • clinician initiated, and
  • mutually agreed upon

Table 2: Patient strategies used to manage opioid tapering

Primarily patient initiated

  • Adjust or limit activities based on opioid supply
  • Adjust timing of opioid consumption based on planned activities
  • Alcohol
  • Avoid family and friends when cranky owing to withdrawal
  • Break pills in half to make supply last longer
  • Caffeine (to reduce withdrawal symptoms)
  • Cannabis
  • Chiropractic
  • Having a family member/friend control opioid supply
  • Maintain an opioid stash for emergencies
  • Maintain social and family interaction
  • Make a schedule of planned daily activities and medication  consumption each morning
  • Massage/massage therapy
  • Meditation
  • Obtain opioids from a friend
  • Physical exercise/staying physically active
  • Pursuing activities/hobbies to keep the mind off pain (eg, video  games, bird watching)
  • Reiki therapy
  • Research tapering and tapering strategies on the internet
  • Seek advice and support from family and friends who have tapered
  • Stay cognizant of your psychological health
  • Stop opioids cold turkey and tough out the withdrawal symptoms
  • Support based on religious faith
  • Twelve-step programs
  • Yoga

Primarily clinician initiated

  • Medication to treat withdrawal symptoms (eg, clonidine)
  • Nonopioid analgesics (gabapentinoids, tricyclics, acetaminophen,  nonsteroidal anti-inflammatory drugs, etc)
  • Physical therapy, including pool therapy
  • Refer to pain clinic for procedures (eg, nerve ablation, epidural ste roid injection)
  • Refer to other specialists (eg, neurology, psychiatry)
  • Refer for medication assisted treatment (eg, buprenorphine)
  • Treatment of comorbid depression

Primarily mutually agreed upon

  • Acupuncture
  • Comanagement (pain comanaged by primary care and specialists)
  • Opioid rotation
  • Psychotherapy or other counseling
  • Supervised substance use treatment programs
  • Transcutaneous electrical nerve stimulation unit

This list should look familiar to most pain patients and contain strategies we’ve all tried with more or less success.

Most patients did not draw sharp distinctions between strategies for managing pain and opioids generally and strategies specific to tapering.

Some patient-initiated strategies indicated possible substance use disorder or “aberrant” opioid-related behaviors; this study focused on patient experience and did not evaluate strategies’ appropriateness

It’s exactly this constant whiff of suspicion that warps the doctor-patient relationship.

Patients reported discussing only a small fraction of strategies with clinicians, although discussion was required for strategies that involved prescriptions or referrals.

Many patients reported minimal or no advice from clinicians about how to manage the pain, withdrawal, and decreased opioid supply associated with tapering, and so devised strategies on their own to solve these problems.

It seems almost like malpractice not to counsel a patient as they attempt to withdraw from prescribed medications.

Most patients maintained an opioid stash for unexpected spikes in pain or delayed opioid refills: “It doesn’t take much to realize you need to hoard something … You have to take care of yourself, you have to advocate for your needs.”

Yet it’s exactly this kind of “hoarding” that’s assumed to be a red flag for addiction.

Several patients described the benefits of a stash as primarily psychological, because having an emergency supply helped patients to manage fears of uncontrolled pain and opioid deficits.

Stashes were mostly clandestine; however, 1 patient reported that his clinician gave him an extra 2 weeks’ supply of opioids at the start of tapering to assuage the patient’s fears about unexpected pain flares and delayed opioid refills.

Of course, patients will not tell a doctor that they have a stash of spares because inevitably, the doctor will then lower their prescribed dose.

Discussion

This study characterized patients’ experiences with opioid tapering and produced a conceptual model of patients’ tapering experiences.

Our study is the first to document the substantial amount of physical, mental, and emotional effort most patients must expend during tapering, much of which is not discussed with clinicians.

Recommendations for Clinicians

Based on our findings and conceptual model, we recommend several communication strategies primary care clinicians can use to foster productive, patient-centered discussions about tapering and to avoid unnecessary opioid prescribing

  • Identify the Social, Emotional, and Health Factors That Will Impact Patients’ Tapering
  • Address Patient Fears About Tapering, Including Fears of Abandonment
  • Fears of uncontrolled pain and withdrawal were nearly universal in our study. Clinicians should anticipate and openly discuss these fears with patients before starting tapering.
  • Only Propose Tapering When You Believe It Is in the Patient’s Best Interest

How can this be possible when so many healthcare organizations have demanded forced tapers?

Several patients were suspicious of clinicians who justified tapering by citing institutional or government policies.

That’s because they were outright lied to by their doctors, many of whom have told their patients that they are legally required to stop prescribing.

Once you catch a doctor lying like this, all trust is forever shattered.

Despite such pressures, clinicians have a responsibility (endorsed by clinical guidelines) to recommend tapering only when indicated based on evaluation of clinical risks and benefits to the patient.

This is NOT what’s happening. Doctors are pushing patients to taper regardless of pain levels or functionality. They seem unconcerned with the decreased functionality and increasing desperation for relief focused only on “obeying orders” instead of practicing medicine.

Citing clinic policies rather than engaging with patients about (actual and perceived) risks and benefits of tapering may undermine the patient–clinician relationship. Patients are more likely to agree to taper when they believe clinicians are acting in patients’ best interest

  • Tell Patients What to Expect When Tapering and Help Them to Identify Strategies to Manage Tapering

Tapering by 10 to 20% every 2 to 4 weeks may be too fast for many patients

Yet I’ve heard from multiple pain patients that they are being tapered 50% every 30 days.

  • Develop an Individualized Tapering Plan With Provisions for Making Adjustments Based on Patient Response
  • Clinicians should advise patients that tapering is a dynamic process subject to adjustment along the way, and make plans for checking in at regular intervals.

Again, this is NOT what’s happening in “real life” as patients are rapidly tapered by force following standardized protocol without any attention to the wide variety of pain types and intensities.

Conclusions

The increased effort required to manage pain, opioids, and emotions, and to perform activities during tapering impacts patients’ identities.

Although not definitive, the clinical recommendations presented here can inform the design of interventions and communication training programs aimed at improving tapering outcomes by fostering effective, patient-centered discussions.

So many studies like this propose changes in how pain patients should be handled, but these proposals are just fantasies, never to be put into practice due to structural and systemic

Other thoughts?

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