How to handle clients with opioids dependence?
Hi!
As a Liaison of the Advocacy Support Center I've read many situations that patients are going through. We have received several calls regarding pain management and the use of opioids during long periods. I was wondering how do advocates handle these kind of situations? Have you spoke to doctors reluctant to prescribe those kind of medications? They have valid reasons? Which are the alternatives you pursue for these patients? Which are the dangers a patient may suffer if the opioid medication is discontinued abruptly?
I would like to know about the experiences from the actual subject matter experts that fight through these issues all day long: the advocates!
Thanks!
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Re: «And a pain management provider is the best fit to address these scenarios.»
it is what worked for my client and something to look at but no guarantee since there should be an honest and trusting relationship between patient and provider.
In the short term, I encourage my clients to track their pain level (1-10) and medications by time of day. If they have the bandwidth, I also encourage them to note the pain location and a description (sharp, searing, dull, etc.). When they talk about their pain with their providers, I may ask them to share what their pain has stopped them from doing (if they shared something relevant with me beforehand). Sharing this information with providers can help them get a fuller picture when making their assessment and prescribing.
I also encourage clients to be completely honest about their (legal and illegal) drug use; to obtain and learn how to use Narcan; and to prepare/share a list of how they manage their pain besides medication (e.g., meditation, therapy/support, yoga, TENS machine, acupuncture, etc.). Showing all the pathways the client has taken supports their valid requests.
It's critical I make clear to the provider which medications have been stopped or are inaccurate. Sometimes a clerical error for a drug that is no longer taken is enough to make a provider hesitant to prescribe more or something else. This is where I step in as an advocate to speak for the patient to share if a script was never picked up, whether the supply was completed as expected, or details on the dosage, frequency, and situation when a specific drug did/did not work.
When the client is struggling to understand why they are having trouble getting a prescription, I will share information or provider chart notations from the client's chart; for example, when they are outside the average on their ED screening scores. This can help clients understand where providers may be coming from.
Like Ilene, I've found that in the long term, connecting clients with a pain management, palliative, or hospice care provider TEAM is the best long-term option. I've found they are more knowledgeable and willing to discuss not only opioid drugs but also the medications to combat the side effects of opioids and other medical and non-medical options, including, but not limited to, mental health and cannabinoid products. In addition, they can best help manage tapering down and the side effects of withdrawal.
Why a team? So clients have access to multiple providers as needed, may be eligible for home visits, and often have a more responsive 24/7 line to call. This is also helpful when the patient has to go to the hospital or their PCP in crisis because there's a record that they have a palliative care team that can advise them and that someone specific is managing all pain medications.
Finally, when working with the provider and client, I will advocate for or ask, «What else?» Alternative options I've pursued or had patients prescribed include lidocaine patches, a nerve block, prescription NSAIDs (e.g., celecoxib and Toradol), and anti-anxiety medications.
Place – Where it is, where it radiates
Activity Impact – What it limits you from doing (work, sleep, and mobility)
Intensity – Average/best/worst levels (0-10 or descriptive words)
Nature – Quality of the pain (burning, stabbing, radiating)
Triggers & Treatments – What brings it on and what relieves it
Other things to track:
Date & time (spot patterns/triggers)
Duration & frequency
Associated symptoms (fatigue, GI issues, brain fog, mood)
Interventions tried + effectiveness
I've found this helps to outline the functional and emotional impacts of their pain and put it into better context for providers. Most of the providers I talk with aren’t uncaring. They’re caught between a rock and a hard place with a patient in pain and a system that has made them nervous or fearful. Many have watched this overdose crisis unfold, and some have even been told by their practice not to take on new opioid patients at all. I generally approach with curiosity and am usually able to learn what’s really driving the hesitation, which gives me something to work with.
Some of their concerns are valid, like the overdose risk, particularly if the person is on higher doses or also taking sedatives, has sleep apnea, or a history of substance use. If the latter, I would want to ensure that an ORT was performed. Harm reduction is part of every conversation for any of my clients on or considering opioids. I encourage clients to keep naloxone on their person and at home and make sure they AND their family know how to use it. We talk about not mixing opioids with alcohol, benzodiazepines, or sleep aids, and about how tolerance drops after a break, which makes the old dose incredibly risky. I also always suggest locking up medications, using one pharmacy, and getting rid of leftover pills at a take-back location.
Other concerns hold less weight (fear of regulators when a patient is stable, blanket practice policies, or the idea that physical dependence=addiction). I try to be very diplomatic to start and validate their concerns, but also highlight that the patient in front of them still deserves an individualized plan and not doing so is potentially causing harm.
I do a lot of work helping clients understand when opioids are supported by evidence and when they aren’t. Sometimes even when they don't want to hear it. They tend to make sense for short-term severe pain after surgery or injury, and definitely for cancer pain or end-of-life care. For chronic low back pain, hip or knee pain, not so much. In those instances, I focus on providing the client with research on evidence-based strategies like movement and utilizing other non-drug approaches so they can make informed choices. For someone already stable on opioids, the information is more a starting point for future conversation, but in no way a reason for them to stop suddenly.
I use a lot of pain neuroscience education with clients, including how trauma can keep the nervous system on high alert and make pain more likely. Understanding that pain is protective, not a measure of damage, often eases fear and opens the door to options like physical therapy, movement, acupuncture, CBT, and mindfulness. Duloxetine, topicals, and buprenorphine are definitely worth asking providers about. We also focus on pacing, rest, and giving themselves grace. I wholeheartedly agree with Jennifer about bringing in a pain management or palliative care specialist, but I find timely access to be the biggest hurdle there. Providers don't want to recommend what they don't know, and finding a provider well-versed in these alternatives is far and few between.
As for discontinuation, I am vehemently against abrupt discontinuation. Patients can face withdrawal, uncontrolled pain, and loss of function. Research has linked stopping long-term opioids to higher rates of overdose and suicide deaths. Not only that, but it could cause some people to turn to the street supply (which is often laced with fentanyl), or lead to folks losing whatever remaining trust they had in the healthcare system, neither of which is ideal. There should NEVER be a sudden stop. I am happy to work with providers on a plan, but I always advocate for a slow taper or transition with a strong support plan that is conscientious, sensible, clear, and agreed upon by all parties.
— I'm absolutely going to borrow PAINT.
— Your note about the link between trauma, the nervous system, and pain is quite timely for a client I'm working with.
— The framing of pain as a protective measure will certainly be useful with orthopedic clients, but perhaps less so with my cancer clients.
I have also faced the hurdle of finding a specialist. Finding a pain/palliative/hospice team with an available appointment has taken between 2 and 4 weeks in my experience. But PCPs and other specialists have generally been relieved to hand that part of the patient's care over.
I had a few months where I was getting tons of these calls myself, so I found some literature and resources. Some is specific to California, and most of my little comments are written for a patient/client email, but you'll get the idea! (Also, I haven't checked most of the links in a few years, but hopefully they are all good. Comment if you find a broken one.)
This fact sheet comes from a group dedicated to policy advocacy for people with chronic pain. nationalpain.org/fast-facts-opioids and this one is a curated list of some of the literature about the harms of tapering against the physicians best medical judgement: nationalpain.org/resources-pain-opioids-patient-harm#facts
More resources from them: nationalpain.org/resources
California state guidelines on opioid prescription: (see page 14 on tapering)
www.mbc.ca.gov/Download/Publications/pain-guidelines.pdf -this one may be a bit hard to read, but it talks about all of the good reasons to reduce a person's dosage of pain meds and why and when and how to do it carefully. Basically it needs to be done with you (the patient) making decisions together with the doctor.
AMA Ethics article about non-consensual tapering: journalofethics.ama-assn.org/article/nonconsensual-tapering-high-dose-opioid-therapy-justifiable/2020-08
This piece was written by a doctor who has experience with chronic pain — its a great read, but it is a little complicated. There are tons of links to studies that your doctor will appreciate, and there is a numbered list of things you can try saying. stefankertesz.medium.com/my-doctor-says-they-have-to-lower-the-long-term-opioid-what-can-i-do-what-do-i-say-b3d35776379e
All that said, there ARE reasons to want to taper opioids, especially for long-term non-cancer pain. They have side effects. So if I can get the client/patient on board with the goal of «pain management» over the goal of «getting my meds» then I want to get them adjuncts. I like the metaphor of a car with 4 flat tires — even if acupuncture (or whatever) alone isn't going to get you back to functional, then maybe acupuncture + a pain psychologist + massage + gabapentin will… This is where I heard that analogy: www.acpanow.com/#/ and they have peer support groups, iirc.
And this is a directory of pain psychologists and some resources: aapainpsychology.org/resources/
I also saved a link to this app, but I don't know if it's good and haven't talked to anyone who's used it.
Curable — The App for Chronic Pain (https://www.curablehealth.com/)
-app for coaching, some CBT, mindfulness/grounding exercises, meditations, visualizations, motor imagery, education, stories of others
-2 week free trial, then paid. $16/month, or $8/month if you buy a year.
As an anecdote, I have an older family member who lives with chronic pain and many other conditions. She's done great with buprenorphine patches, in part because they come with a pain management team (RN she can call when she has questions, and a doctor who regularly prescribes this med and suboxone) — really better than she ever did on oxycodone pills. So, definitely agree that it's worth suggesting callers ask their doctors if they know anyone who can do this and refer out.
A note on ACPA- they have some great resources all available for public use. They have a great selection of PDF handouts for clients to use in communicating about their specific condition. Under their resources, they also have the ACPA Stanford Guide, a fabulous handbook for anyone working with pain patients. I keep a printed version as a desk reference, but I also save it to my favorites because it includes numerous valuable resource links.