Way too many doctors forget about the human behind the patient. They see a problem to solve, and bristle when those problems don’t uncritically accept their diagnosis and treatment, or lack thereof. They have to maneuver around annoying things like a person’s religious beliefs, distrust of medicine, or god forbid a desire to be a functioning human being despite their illnesses.
A recent op-ed was published in JAMA Internal Medicine entitled “Centers for Disease Control and Prevention Guideline for Prescribing Opioids, 2022—Need for Integrating Dosing Benchmarks With Shared Decision-Making.” Quite a mouthful, but nothing unreasonable on the face of it. No, you have to dig a little deeper and read the text to find the ignorant drivel of doctors who have no interest in understanding their patients.
The opinion piece is about the implementation of using something called the Shared Decision-Making method, where patients and doctors work together to make a treatment plan for their condition. That sounds perfectly fine to me. However, according to the authors, it is a problem to use it with people taking prescription opioids.
The reason? We’re irrational, of course.
Shared decision-making can provide a crucial first
Centers for Disease Control and Prevention Guideline for
step in patient engagement by clarifying the patient’s
perspective and enlisting patient agency in health pro-
motion. The value of SDM has been recognized for many
years but also has its limitations, including where pa-
tients make irrational or short-sighted decisions. 6 Ac-
cording to a recent review by Montori et al, 7 SDM is not
just about clinicians helping patients select the best evi-
dence-based treatment option but rather, “The patient
and clinician must collaborate to arrive at a useful for-
mulation of the problem.” Often, patients consider pain
intensity reduction as a necessary first step in chronic
pain treatment, but this is not consistent with the most
recent evidence.
Prescribing Opioids, 2022—Need for Integrating Dosing
Benchmarks With Shared Decision-Making by Mark D. Sullivan,
MD, PhD; Jeffrey A. Linder, MD, MPH; Jason N. Doctor, PhD
According to Sullivan, Linder, and Doctor, patients in pain have a desire not to be in pain and this makes us irrational in having a say in our own health and pain management. We also have the silly notion of wanting to address our severe pain before getting to the underlying problem. Coming from doctors who I can confidentially say have probably never been in an ER screaming in agony in the worst pain of their life and desperately crying for a moment of relief only to have doctors refuse to treat them because they assume they’re just a drug-seeking addict. I could be wrong, but I don’t think I am.
Every person has experienced some level of excruciating pain one way or another. Whether you touched a hot stove, had a migraine, broke a bone or stubbed a toe, we’ve had moments of agony. It is a universal and human reaction in these painful moments to not want to be in pain. Pain is overbearing and all-encompassing. You can’t think in severe pain and you certainly can’t function normally without relief. It is not irrational to need that to stop before taking on treatment like physical therapy.
The op-ed refers to a study that says pain treatment and improvement doesn’t require pain reduction to come first. Maybe that is true, but so what? Just because people are able to heal in severe pain doesn’t mean they should be required to do so. What is wrong with allowing people to recover from injury or illness in less pain? The notion that healing doesn’t necessitate pain relief likely doesn’t take into consideration the psychological toll of prolonged pain. Also, it’s not always about what is precisely accurate but what the humane and ethical thing to do is.
I personally am still in pain from foot surgery but I have made lots of progress in healing. Without the pain relief I received from opioids, I would not have been able to follow through on the physical therapy and make the progress I have made. Maybe I could have made the progress without pain relief, but why should I be forced to do so? I certainly don’t hold to the notion that enduring pain is some noble quality. Especially since I’m in pain from other illnesses and, despite my opioid use, I’m always in pain, struggling to just function every day.
We endure pain when we have to, but I think a lot of people’s notion of “have to” prefers everyone just suck it up always.
Fortunately, we have medicine so that people don’t needlessly have to endure excruciating pain from broken bones, surgery, and other painful diseases. Opioids have risks but we understand them well and I think it’s possible to communicate those risks. I’m not pretending opioids are safe and anyone in pain should have an all-access pass. However, we need to be able to talk to our doctors about pain relief options without doctors thinking our desire for pain relief is irrational or that the effects of a medication exempt us from a say in our care. Would these same doctors tell a person with cancerthat they’re irrational for wanting not to have cancer anymore? Because that’s genuinely what it sounds like here.
Of course, none of this even considers the reality of lifelong chronic pain. I will never not be in pain from fibromyalgia, a herniated disk and more. According to this op-ed, I’m irrational for not being able to see a fulfilling life without some measure of pain relief.
(4) although patients with chronic pain are
Centers for Disease Control and Prevention Guideline for
not usually at imminent risk of death, they often can see
no possibility of a satisfying life without a significant and
immediate reduction in their pain. This induces a sense
of crisis that shortens the time frame considered in
decision-making.
Prescribing Opioids, 2022—Need for Integrating Dosing
Benchmarks With Shared Decision-Making by Mark D. Sullivan,
MD, PhD; Jeffrey A. Linder, MD, MPH; Jason N. Doctor, PhD
The callousness of this sentimentand and lack of understanding is breathtaking. When you are suffering from severe amounts of pain, you have every right to want that pain to end as soon as possible.
Furthermore, life with chronic pain is a life where you constantly have to say no to social engagements because you’re in too much pain. Where pushing yourself to go out for a day or two means you are in bed for the next 3 days straight. Where you can’t pick up and hold your niece and nephew because it hurts too much. A life where you can’t work anymore or participate in your favorite hobbies that you practiced for years. Things that were enjoyable like reading a book become harder because of the pain that won’t leave your mind and body. Sitting and watching people have fun that you know you can’t join in or it will hurt for weeks.
You just exist, clinging to whatever few things you can still do to feel normal. How irrational of me to want to have a life that’s more than just existing.
They also claim there is no study to show the efficacy of long-term opioid use, but fail to mention why. It’s considered unethical to give someone in severe pain a placebo for a long time. It’s also true of all pain medications for the same reason. Funny how they tend to leave that bit out of their denouncement of long-term opioid use.
While there may not be a study showing long term use of opioids is beneficial, there are still anecdotes. Many many many anecdotes. Given we can’t get that perfect study, they count for something. But, oh right, we’re probably too irrational for these doctors to possibly accept our shared experiences. Still, Opioids are beneficial in the long-term for me, if anyone was actually wondering.
Luckily, I’m not the only one disagreeing with this article. Here’s part of a response entitled “Opioid Dosing by Primary Care Professionals — A Call for Humility”.
Sullivan et al disagree with this change in the CDC recom-
Opioid Dosing by Primary Care Professionals—A Call for Humility by Mitchell H. Katz, MD; Deborah Grady, MD
mendations. They argue that some long-term opioid users
are not reliable partners for shared decision-making because
they cannot accurately weigh the risks and benefits of opi-
oids for chronic pain, at least in part because of the effect
of long-term opioid therapy on their ability to make good
decisions.
We recognize that some readers may strongly disagree
with the arguments in the article. Explicit dose and duration
limits have been blamed for drug overdoses with illicit sub-
stances, as have rigid state rules and insurance denials. Many
will also disagree that patients using opioids are not capable
of robust shared decision-making. Primary care profession-
als generally highly value the inclusion of the patient’s per-
spective in decision-making, consistent with the principles
of patient autonomy and self-determination, and are loathe
to go against a patient’s wishes.
If nothing else, the practice of primary care teaches hu-
mility. Care of a patient with chronic pain is among the hard-
est issues we deal with. As primary care professionals, we have
found it helpful to tell patients that it is not recommended to
take more than a specific threshold of opioids and that we
do not want to prescribe something that is not recom-
mended. However, that does not mean sticking to rigid cut
points for dose and duration of opioid use, abandoning pa-
tients, or having them undergo too rapid a taper.
In this rebuttal, Katz and Grady acknowledge that hard limits and forced tapers have forced some to turn to illicit substances. They also argue that you can include pain patients in the discussion of their care and make them aware of the risks. I can say this has been my experience with my current pain doctor.
There’s nothing wrong with trying to figure out better ways to use opioids in ways that are as effective and safe as possible. However, this op-ed by Sullivan et al really doesn’t suggest anything new, especially when it comes to peddling alternative therapies that range from minimally effective to straight up pseudoscience. Sorry, there’s just no comparison with pain relief when it comes to opioids.
It is also a bit ironic they are worried about drug diversion, when opioid supplies have been intentionally held back and shortages are causing patients to go though unnecessary and awful withdrawals. I recently had to go though withdrawal because of a prescription mixup for half a day and it was exhausting. Your body doesn’t want to stop moving and everything becomes more painful, full of sensory overload. No one should be forced to go through that because the current problem of opioid death isn’t even primarily RX medications anymore. It’s illicit opioids laced with fentanyl. Everyone knows this but doctors like these continue pushing for stockpile reduction that directly harms pain patients.
Recently, I watched a documentary on Prohibition. There were lots of specifics I didn’t know, like how doctors would sometimes prescribe alcohol and had an exemption for this during prohibition. (Not enough to get really sloshed though.) Of those who drank during this time, they drank so much more that alcohol-related illnesses actually rose in numbers. I knew home brews and distilleries were made but I didn’t know that rubbing alcohol was poisoned deliberately to avoid its use as drinking alcohol. People drank it anyway. Many died.
I think most Americans agree that Prohibition was a complete failure. The film I watched repeatedly said that you can’t legislate morals, which I agree with. I would also say that you can’t legislate addictions either. Opioids are not the same as alcohol; they should not be recreational like alcohol. However, they are medically necessary to treat people in agonizing pain, whether it is from injury, surgery or disease. Doctors have an ethical imperative to treat their patients to the best of their ability, and that includes relieving pain.
The film also made the point that about 10% of the population has alcoholism, and prohibition tried to stop their behavior by stopping everyone’s access. To deny medication based on risk that has been measured to be anywhere from 10% to 1% percent of the population, depending on the source. That’s 90%-99% of the population whose medical needs are being ignored for fear of a risk that we have warning signs and treatments for. Is it really logical to deny people pain relief, or have people apply a morality to taking opioids that people have also applied to alcohol? Battling addiction is far more successful when you try to actually help addicts on their level instead of just condemning the object of their addiction and banning it. It just goes underground.
If restrictions actually worked, maybe I would not be so upset by op-eds like these, but they clearly don’t. The unforeseen consequences of Prohibition killed many people who did not need to die. The same goes for the opioid crisis. This crisis is claiming not only addicts, but pain patients too who have been forced off or tapered on their opioid medication. Maybe they committed suicide, have a medical complication due to withdrawal, or suffered an overdose on illicit opioids laced with fentanyl in their desperation for pain relief. Unintended consequences, I know, but I saw that one coming the whole time.
Lastly, let’s consider the source. The author, Dr. Mark D. Sullivan, much like us irrational pain patients, has his own biases and conflicts of interest. He has testified as an expert for Physicians for Responsible Opioid Prescribing (PROP), which has its influence on anti-opioid measures.
The 2016 CDC Guidelines were heavily influenced by PROP. When they came about, my state passed laws based on them that had a direct effect on my health. I was denied opioids for months for no good reason. I also cannot take the pain regiment that works best for me because the DEA doesn’t think I should be on two different opioids. And as mentioned before, due to the red tape around opioid prescriptions, I went into forced withdrawal for no good reason.
It’s clear to me that doctors who can put their name to sentiments in this op-ed do not see the full human being sitting before them in the exam room. We are not a problem to be solved, but a person to be helped. Relieving pain always helps.
#PainKills Project 