Thanks to Amanda for commenting! All great stuff in there (as expected from our advocacy pain expert).
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.
Hi — I'd be honored to speak to this family, though I can't guarantee any outcome despite experience in all relevant areas. One of my med school mentors in Kansas was in pediatric endocrinology, so I'm familiar with the medical side of this story — certainly don't want to miss the window of time before those growth plates close!
I suspect this particular family is running into more trouble than most because of the care being across several states and insurances, but I can't be sure that's the only barrier. Even with the traveling/moving, I'm a bit surprised they are stuck since it seems like they have a lot of self-advocacy skills in regards to talking with insurance and handling records.
If it turns out to be an issue of needing someone with an MD to talk to a doctor and/or insurance company(ies) to get this done, then I'd be happy to be that person. We could knock this out together! But, I would definitely like to look over the records to make sure there isn't more going on here. With a pituitary lesion, I'm surprised GH and LH are all that's mentioned… Sounds interesting, regardless. And, if they are with Blue KC and it's the same now as it was 5 years ago...nothing but sympathy!
Anyway, I do free consult calls that can be booked through my website. :)
I'll mention it to the potential client and see if they want to wait for/potentially risk the NDA process before I pay for a lawyer's time. I think you're right, too, that there is a risk of me being called to court. (I already have a travel rate written into my service agreement, too.) The other thoughts I had were
1. Maybe the client can just not tell me anything too sensitive so I wouldn't be able to answer anything in court, or
2. I could talk only to the spouse instead of the «real client» and provide coaching on how to be a stellar care partner. I think they should be protected by marriage?
It might just be that this client will have to wait until after court matters are resolved to hire an advocate too.
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.
I suspect this particular family is running into more trouble than most because of the care being across several states and insurances, but I can't be sure that's the only barrier. Even with the traveling/moving, I'm a bit surprised they are stuck since it seems like they have a lot of self-advocacy skills in regards to talking with insurance and handling records.
If it turns out to be an issue of needing someone with an MD to talk to a doctor and/or insurance company(ies) to get this done, then I'd be happy to be that person. We could knock this out together! But, I would definitely like to look over the records to make sure there isn't more going on here. With a pituitary lesion, I'm surprised GH and LH are all that's mentioned… Sounds interesting, regardless. And, if they are with Blue KC and it's the same now as it was 5 years ago...nothing but sympathy!
Anyway, I do free consult calls that can be booked through my website. :)
I'll mention it to the potential client and see if they want to wait for/potentially risk the NDA process before I pay for a lawyer's time. I think you're right, too, that there is a risk of me being called to court. (I already have a travel rate written into my service agreement, too.) The other thoughts I had were
1. Maybe the client can just not tell me anything too sensitive so I wouldn't be able to answer anything in court, or
2. I could talk only to the spouse instead of the «real client» and provide coaching on how to be a stellar care partner. I think they should be protected by marriage?
It might just be that this client will have to wait until after court matters are resolved to hire an advocate too.