In my many years working as a patient advocate, in the area of chronic pain, I have seen and heard a lot of…garbage. People talk a lot of garbage, and pain science seems to attract a lot of garbage science. And yes, garbage scientists.
It also attracts a lot of anti-opioid zealots. People who, for whatever reason, do not believe that opioids should be prescribed for chronic non-cancer pain. Under any circumstances.
Why? I have no idea. The science does not support that view. The evidence shows that opioids are a safe effective treatment for those who live with severe, unrelenting pain due to disease or injury. Admittedly a minority of chronic pain patients, but a very important minority.
So, if it’s not about the science, it must be their personal view. Which they continue to try and elevate to something more important than personal opinion, by abusing their professional position.
I’m sure, ultimately, money is at the bottom of it, but it doesn’t really matter. What matters is that they are spouting their garbage again, and somehow legitimate, even prestigious, journals are publishing their garbage ideas.
The latest is in JAMA, and sadly, I cannot read the whole thing. Scientists only. Or pay a large sum of money that I, as someone who lives well under the poverty line, cannot afford. So I have the first page, and the summary, and for the rest I rely on my fellow pain patient advocates, and other scientists who are reasonable, considered, intelligent human beings, to cover what this latest piece of pond scum has produced.
Firstly, it’s not a study, it’s an Op/Ed. I have no idea why JAMA would publish it, but I’m guessing there must be some pay to play involved. Because this piece of work has no scientific value, it is offensive to every person living with severe, daily pain. People with severe chronic secondary pain, who require long term opioid therapy for any kind of quality of life.
The lead author is Dr Mark Sullivan, who is well known for his anti-opioid views. He is a psychiatrist, and addiction medicine specialist. He has NO qualifications, education, or experience in treating chronic pain.
He is not an expert in this context. Therefore, it is not truly and Op/Ed. And Op/Ed is an expert opinion. Dr Sullivan is not an expert in this field.
Dr Sullivan is a board member of Physicians for Responsible Opioid Prescribing (PROP), an influential anti-opioid activist group. They were instrumental in the US CDCs 2016 opioid prescribing guidelines that were devastating to chronic pain patients who relied on long term opioid therapy in the US. And then later to other western countries who adopted their propaganda.
However, in 2022, the CDC opioid prescribing guideline was updated, removing all references to dose limits, and instead calling for shared decision-making in regard to tapering a patient off long term opioid therapy. The guidelines were reviewed in direct response to evidence that the 2016 guidelines, and the forced tapering they precipitated, caused serious harms to chronic pain patients.
What to do, what to do…we can’t have patients having a say in their own pain management, now, can we? That’s despite collaborative care and shared decision-making being the gold standard of care across modern medicine. The days of patriarchal care, with a doctor dictating treatment, are long gone.
There aren’t many times when a doctor must enforce a medical decision, although it does happen on occasion. For example, when a patient is mentally or intellectually unable to make appropriate decisions for themselves.
And there we have it, folks, the answer to Dr Sullivan’s dilemma!
How very elegant…simply purport that chronic non-cancer pain patients are mentally incompetent. Incapable of making rational decisions because they are addicted to their medicines, and therefore their judgement is too compromised to make decisions about their own care. Therefore, doctors must take charge, and you guessed it, taper them!
What a simple strategy. And Voila! This op-ed was born.
He states that:
“Limitations in shared decision making occur when:
- Wider interests overrule individual wishes
- Evidence of benefit is insufficient or absent
- Lower decisional capacity is present, and
- Profound existential uncertainty exists”
Further, he states “the prescription of long-term opioid therapy poses each of these challenges”.
His position is:
1) When prescribing opioids, the physician has a responsibility to consider whether those opioids might be diverted to illicit users.
Right. So don’t treat the patient who is in severe pain, on the one in a million chance that someone will steal their opioids, or otherwise divert them to the illicit market. Way to prioritise, doc!
2) He’s pulling out that old chestnut that there is no evidence that opioids are effective long term.
This is false, there is now plenty of evidence that opioid are safe and effective long term. So, scratch this one too.
3) He states that long term opioid therapy induces dependence and this dependence compromises patients’ decision-making capacity.
It seems the addiction medicine specialist, the psychiatrist, needs to be schooled in the difference between ‘addiction’ and ‘dependence’. What he is describing is addiction. And 99% of pain patients never become addicted to their pain medicines. They may, however, become physically dependent, but this physical dependence does not compromise the patient’s decision-making ability. Perhaps he needs to go back for a little more post-doc education.
4) Dr Sullivan states that people with chronic pain on opioids see no possibility of a satisfying life without significant and immediate reduction in pain. He calls this ‘existential uncertainty’.
The good people over at Paindr.com have also quoted this statement, as well as a few more bangers.
They have access to the entire study, not just the first page, as I do. The next few statements are sourced from them, and parts the study I don’t have access to.
The statements in bold italic are quoted from the study by PainDr.com
Although patients with chronic pain are not usually at imminent risk of death, they often see no possibility of a satisfying life without a significant and immediate reduction in their pain.
Excuse me, what? So much to unpack here. Because we’re not at ‘imminent risk’ of death, our pain doesn’t matter? Do we only care for people at imminent risk of death now in medicine? Isn’t medicine also there to relieve suffering, to relieve pain, not only to persevere life?
And as for ‘they often see no possibility of a satisfying life without a significant and immediate reduction in their pain’.
We are talking about SEVERE pain here! An 8+ on the old 10-point scale. It IS impossible to have a satisfying life while living with constant 8+ pain!
We need to remember that opioids are prescribed for severe pain. Not mild pain. It is possibly to live a satisfying life with mild, even moderate pain, albeit impaired at times. It is NOT possible to live a satisfying life when in constant, severe pain.
I would love for Dr Sullivan to perhaps break his femur, and then demonstrate how to live a satisfying life, while dealing with the pain. I’m sure he would be capable of working full time, writing op/eds, and would absolutely not ask for opioid pain relief at all! I bet he could run a marathon on a broken femur, and smile while doing it.
I know that he would argue that a broken femur is acute pain, and therefore different to chronic pain. But this is also incorrect. Severe chronic pain is most often chronic secondary pain, the kind of chronic pain where there IS ongoing tissue damage. Chronic secondary pain is the same as acute pain, except acute pain heals. Severe chronic secondary pain does not.
The kind of chronic pain that is different to acute pain is chronic primary pain. Pain where there is no medical cause for the pain. You would think that a doctor who specialises in chronic pain would know this.
Oooops! I forgot. Dr Sullivan does NOT specialise in pain management. He has no qualifications, experience, or education in pain management. He is an addiction medicine specialist and well outside of his area of expertise here. Very important to remember that.
At the core of this campaign of terror against people who live with severe, daily pain is the utter denial that there even IS such a thing as severe, daily pain. That pain can be chronic AND severe. This argument has been used for many years to dismiss ‘chronic pain’ and abandon those who suffer the most severe pain.
Ten years ago, it was well understood that many diseases were incurable and caused severe, daily pain. Rheumatoid arthritis, MS, Parkinson’s, adhesive arachnoiditis, spinal stenosis, nerve root compression, many, many diseases can cause intractable pain. And that pain is most often treated with long term opioid therapy. It is the only therapy that works for severe pain.
Now, people like Dr Sullivan and his colleagues at PROP have used every trick in the book to dismiss, demean and disparage people who live with severe pain. I do not understand how they have that power, but here we are.
To deny pain care is abhorrent, but Dr Sullivan’s above statement also carries the very clear implication that patients living with severe pain are just lazy. That they do not want to do the hard work, they just want a pill to fix things. That they INSIST on pain reduction. Imagine that! Imagine wanting relief from severe pain. Clearly outrageous!
Dr Sullivan completely ignores the fact that when it comes to severe, daily pain, opioids are the only therapy that can substantially reduce pain. People who live with severe, daily pain are not only being denied safe, effective pain care, but are also being demonized and stigmatised. Told they do not exist.
And this, from a psychiatrist! A physician, sworn to do no harm.
Also from paindr.com
Opioid use itself biases patients’ perception of pain relief and weighting of the risks and benefits of ongoing opioid therapy.
How so? Please explain how opioid use biases patients’ perception. The idea that we are too stupid or too addicted to know if pain medication is reducing our pain is deeply offensive and there is no evidence to support this opinion. Although I have had people use this argument against me many times on twitter. Yes, twitter. That great bastion of scientific rigor. That’s the quality of Dr Sullivan’s argument here.
Pain relief is at maximum at opioid initiation and will likely diminish over time due to development of opioid tolerance.
The truth is most people on long term opioid therapy remain on a stable dose for many years, even decades. While tolerance is an issue, it is vastly overstated by anti-opioid zealots like Dr Sullivan. Most often when people require an increase in opioid dose, it is because of disease progression. Not tolerance.
He has anticipated this argument by saying “tolerance may be misconstrued as worsening of the original pain problem, so that physician and patients respond with higher doses. Interdose opioid withdrawals is often misinterpreted as an exacerbation of the original pain problem but this “breakthrough pain” is often the result of opioid dependence.”
Again, so much here to break down.
Firstly, what is ‘interdose opioid withdrawal’. There is no such thing. I have consulted Dr Google and the term is previously unheard of within google’s entire archive. He made it up. Like much of this Op/Ed.
What I believe he is trying to say is that as extended-release pain medicine wears off, and pain returns, this is actually withdrawal, not the original pain condition.
What utter garbage! No one goes into ‘withdrawal’ in between opioid doses, that’s utterly ridiculous. Clearly, it IS the underlying pain condition being felt, as the effects of the medication wane.
Do you know how I know that? Because the return of the underlying pain is not a symptom of withdrawal.
Let’s look at this logically. The opioid pain medicine is wearing off, and the person starts to feel, not the known symptoms of withdrawal, but pain. ANd it feels exactly the same as their original pain.
The symptoms of withdrawal are nausea, vomitting, abdominal pain…but patients don’t report that.
No. They report pain. And for each person, they report their original pain condition. For each person their original pain condition is different. So each person is experiencing different symptoms of ‘withdrawal’. The person who has intractable rheumatoid arthritis pain reports joint pain. Withdrawal. The person who has MS or CIDP reports neuropathy. Withdrawal. The person who has spinal stenosis reports spinal pain. Withdrawal.
Amazing that each person’s ‘withdrawal symptoms’ correspond exactly to their underlying pain condition, and are nothing at all like the stated symptoms of opioid withdrawal. And are not at all similar to eachother.
Astonishing how ‘withdrawal’ mimics all of these different pain conditions, and is exactly the same as the underlying pain condition for each person. And is different in each person. Almost as if it isn’t withdrawal, but actually IS the return of the underlying pain condition!
Seriously, doc, make it make sense.
Paindr.com makes many more excellent points, and I highly recommend you read their article.
All these leaves me to wonder why PROP, Dr Sullivan and friends, are so zealously anti-opioid. Their ‘science’ is flawed, and their work is being slowly discredited. The CDC guidelines are being rolled back and many in the medical fraternity are understanding, at last, the harms caused by tapering people off long term opioid therapy. Are they afraid their influence is waning?
Pat Anson at Pain News Network makes further important points:
Sullivan and his two co-authors, Jeffrey Linder, MD, and Jason Doctor, PhD, have long been critical of opioid prescribing practices in the U.S. In their conflict of interest statements, Sullivan and Doctor disclose that they have worked for law firms involved in opioid litigation, a lucrative sideline for several PROP members.
So there we have it. Seems it IS all about money. Their bank balance is far more important than patient care, or even science or medical evidence. These men are willing to demean and disparage some of the most vulnerable patients in our communities, people who suffer severe, daily pain, so they can become wealthy. Or rather, more wealthy. Last time I checked psychiatrists make a very good income. Its never enough for some people, I guess.
Pain News Network also quotes several MDs who are not fooled by the flawed science and strawman arguments Dr Sullivan puts forth. Doctors, including Mitchell Katz, MD, and Deborah Grady, MD, dispute the notion that patients on long term opioid therapy are incapable of shared decision making.
“Primary care professionals generally highly value the inclusion of the patient’s perspective in decision-making, consistent with the principles of patient autonomy and self-determination, and are loathe to go against a patient’s wishes,” they wrote.
Chad Kollas, MD, a palliative care specialist also rejects the idea that patients shouldn’t be involved in their healthcare choice, and questions the value of publishing this Op/ed at all.
“While I recognize the editors’ legitimate intellectual interest in providing a forum for open discussion on the opioid policy space, I question their decision to publish an editorial that represents an ongoing call for broad, ill-defined reductions in opioid prescribing.
Errantly embracing a lower evidentiary standard for medical decision-making capacity creates an unacceptable risk for harm to patients with pain by violating their rights of medical autonomy and self-determination.”
Some of their comments, and others, can be found on the JAMA site, in rebuttal to the Op/Ed.
An Op/Ed, is by definition an expert opinion. But Dr Sullivan, and his cronies…I mean colleagues, are not experts in pain management. They are addiction medicine specialists, who see the 1% of chronic pain patients who become addicted to their opioid pain medications.
They do not see pain patients. They do not treat pain. They do not see the benefits that long term opioid therapy confers to those living with severe, daily, secondary pain. They are not experts in pain management or opioid prescribing for pain. Therefore, is hard to even characterise this as an Op/ed. It’s a layman’s opinion.
I wonder why JAMA published it, but perhaps even JAMA needs clicks, and even JAMA is not above clickbait. Afterall, that’s where the money is. It always comes back to money.
Since the 2016 CDC guidelines were introduced, prescription opioid prescribing in the US has fallen by half. Yet opioid related deaths have continued to increase, reaching record proportions.
This simple fact alone shows that prescription opioid are not the cause of the opioid epidemic and its time to call halt to the untreated pain epidemic that these unscrupulous doctors have caused, not just in the US, but across all English-speaking countries – the UK, Canada, New Zealand and Australia.
We do not have an opioid epidemic. We have an untreated pain epidemic.