Empathy Must Be Included in Pain Management Education
This article, in a slightly edited form, first appeared on Pain News Network on August 3, 2019.
The National Institutes for Health (NIH) has published a Request for Information (RFI) that seeks input from “stakeholders throughout the scientific research and medical education community and the general public regarding the Centers for Excellence in Pain Education (CoEPEs) educational content regarding treating pain and opioid misuse or use disorder.”
Although the NIH is asking healthcare professionals to weigh in, comments from the general public are also welcome. If you are a person in pain, or love someone who is, your input is what all healthcare providers should hear.
You can see the RFI—Guidance on Current Education Curricula for Health Care Professionals Regarding Pain and Opioid Misuse and Use Disorder, here, or below. The link includes an email address to use to contribute your thoughts.
This is an opportunity to tell the NIH what you would like to see included in pain education, or what needs to be taught regarding opioid misuse or abuse, from your perspective. People often want to be heard. This is the time to let the NIH know what you believe is important to teach all healthcare providers.
Potential educational topics could include:
- What you feel should be the primary goal of pain treatment
- The role of empathy, rather than animus, in treating people with pain
- The power of trust, rather than suspicion and disbelief, in the therapeutic relationship
- Techniques to reduce the stigma of pain, disability, and opioid use disorder
Therapies of the Heart
My comments to the NIH will include some of my strongly-held beliefs, including:
Pain therapy must include compassion. A therapeutic relationship may not be considered mainstream medical treatment, but it is crucial to pain management. It includes acceptance, compassion, listening, respect, encouragement, trust, kindness, patience, and being fully present.
I call these the therapies of the heart. They are simple, yet vital, components of a broad-based approach to treating the whole person.
Too often, people in pain are abandoned by health care professionals, family members, and friends. They need to be supported by all the key people in their lives and treated by medical professionals who are adequately trained.
Education should convey that pain isn’t just biological. It is psychological, social, and spiritual. A healthcare professional who treats pain must internalize this concept to provide the most humanistic treatment possible.
The fact that withdrawal does not mean addiction is a concept too few people in healthcare understand. Any education that discusses opioids must make clear the differences between addiction and withdrawal. Providers also must learn that a person who experiences withdrawal is not necessarily addicted.
I will recommend to the NIH that their program require all participants watch Travis Rieder’s TED Talk. I will ask that their curriculum make it clear that babies cannot be born addicted. The fact that the media commonly uses the phrase “addicted babies” in place of “babies with neonatal abstinence syndrome” only reinforces the misunderstanding of what clinical withdrawal means.
Additionally, education should address misconceptions about people in pain, and how chronic pain affects families and other relationships. Educational content should include a discussion of the losses that accompany chronic pain—to the person in pain, and also to their family members.
Providers need to be trained to understand that pain is personal and individualized; therefore, treatment must be individualized, too. What works for one person may not work for another.
Here is the RFI in its entirety.
Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth” and co-producer of the documentary, “It Hurts Until You Die.”
I had fibromyalgia for many years before a traumatic brain injury. I am unable to drive or walk without assistance. Since I am on disability & Medicare, a lot of pain treatments are out of my ability to pay except for pills. I have tried most: mindfulness (brain injury interferes), yoga ( dizzy so I can not stand without assistance), exercise (limited due to illness), diet & mental heath assistance! These do not help the pain to abate enough. Right now, I am in bed due to a pain flare! Not able to cook, do laundry, or even sleep more than an hour at a time or stay in any one position for more that 1 hour. I read every article put out there & I am a nurse. When I hear a MD say he does not believe Fibro happens, I KNOW right away he/she is an idiot & uneducated. My nurse practitioner (God bless her) knows I know more that she does & I help teach her. How in the world would someone in Federal & State legislators KNOW how to treat me when the medical field does not! I want government OUT of my healthcare, PERIOD! I would like to try Cannabis, but it’s illegal in my state & medical Cannabis rules do not cover me. I just want a hour/24 without pain, I do not think that’s a lot to ask.
First of all, I am deeply offended by the term “Opioid Use Disorder.” Why should it be considered a disorder for legitimate pain patients to use pain medicine? Is it just because they are opioids? News Flash-they work well for pain and function and they have for years. This country has thrown away the best tool in the toolbox in the atmosphere of misinformation and hysteria. I am outraged at losing a wonderful doctor, forced to go to pain clinics where I am treated like an addict. After being on pain medicine for 24 (the last 7 years on Oxycontin and Oxycodone) for multiple medical conditions well documented, why should I be bullied to try and force me into rehab and behavioral treatment, psychiatric evaluation to see if I am an addict, to be forcibly tapered to virtually nothing. These clinics try to force me to take Suboxone which is more addictive and won’t help my pain like what I was on. No one asks me about my pain, no one cares. False positives on a UA gets me cut off completely. 24 years of never failing a test, never cheating and the records to prove it but I have no say. No one cares. Look for months for another doctor to prescribe and even though I haven’t found one that will, I am told I am “doctor shopping” by ignorant doctors that don’t seem to understand that I am NOT getting meds from anyone. I should have to right to keep looking for someone who will prescribe, although most of them are still too afraid of the DEA to do it. Finally found one who acknowledges that I have enough organic medical problems to justify oxycodone-gives me 10mg-3/day which does nothing to touch my pain. Then he informs me that he wants to try 26 different anti-depressants and three pages of alternative therapies and lifestyle changes before he will consider raising the dosage. For someone who was on a high dosage of the 2 opioids mentioned earlier, this is devastating news. No pain relief and no function return. It became a moot point anyway. I got oxycodone at that low level for only one month. Next appt. got the results of my first UA and it showed alcohol! Doesn’t matter that I haven’t drank alcohol in 25 years because of medical issues and the fact that I was taking pain medicine. No discussion-immediate cutoff. Two more failed UAs, I am obviously NOT drinking-GI doctor won’t help me figure it out, neither will PCP, nor will this pain doctor. My brain surgeon finally gave me a nine page list of household products that can cause alcohol to show up on UAs. I have another visit to the pain clinic coming in a few days to try again. I cannot wear my deodorant, use my mouthwash, wear any clothes washed w/jDowney Fabric Softener, can’t touch Clorox Toilet Bowl Cleaner, use my perfume, a hand sanitizer and on and on. Why is he using a test so sensitve to alcohol that it picks up these minute registers. Can’t they just test for drinking alcohol-I guarantee nothing would show up! My pain clinic Dr. and my PCP refuse to let me get a blood test to prove it, and I can’t afford to pay for one myself. Again, no one cares about my pain and my increasing inability to function. It just shouldn’t be this hard to get pain relief. I just had a 2nd brain surgery for a 2nd aneurysm (Gamma Knife Radiation)-horribly painful procedure and 6 weeks recovery-no pain medicine at all was involved. My GI doctor thinks I should have my stomach removed for the issues I have. I would never risk stomach surgery again with no post surgery pain medicine. My RA & OA, my muscle spasms, daily headaches and restless legs are out of control. I have had chronic pain since childhood. I didn’t take any pain medicine until I was in my forties. I am now 63. I am too old, too tired and in too much pain to keep biting on the proverbial stick to tough it out. I am going down with pain stress-will probably have a heart attack or another stroke. I try very hard not to think about killing myself, but how many more years can I take the pain?. Two years now with woefully inadequate pain medicine or none at all. No understanding, no empathy shown just following the rules or willful ignorance. I’ve shown many doctors info from many sources to educate them, they are not interested. I am tired of missing or cutting short family visits because of pain and exhaustion. It takes days to recover from various errands and household chores. I can’t sit, stand or lay down for any time length because of the pain. Telling me to exercise more, try this, try that-most of which I have tried over the years or already do doesn’t help. I NEED Oxycontin and Oxycodone to knock back the pain enough so I can function. Do you see some areas for doctor education in my post? I hope so. I’m tired now, I have to quit.
The pseudo-addicts, that is those too terrified to face withdraw for their ill advised use of opiates as a ‘party drug’, …did more to make what became opioid prohibition, after the threat to ethical Doctors of Medicine became real, a ripe apple for the opportunists seeking money via shortsightedness and fudged numbers and tall tales and much tear jerking for these regardless of what happened to many more millions of legitimate chronic, incurable severe pain sufferers. I have had to full withdraw maybe twenty times. I was not a true biological addict. After cut-off or ‘losing’ a Doctor of Medicine or rebelling against starvation doses and fallen off patches I knew I would be very sick for a while and then would whistle again however with biting and burning from untreated congenital canal stenosis and disc abrading the cord in 4 places. Unfortunately now I have heart failure for the mobility I have lost.
As a chronic pain patient for the past 35 years, I can’t even begin to tell you just how very, very much I continue to appreciate your ever-ongoing compassionate advocacy and endless activism regarding the treatment of chronic/intractable pain and for the plethora of informative and helpful information you continue to share. Blessings and enormous gratitude, Dr. Webster!
I have read so much about the nightmare of chronic pain patients being lowered or taken off their pain medications which are opioids. I have been on opioids for 20 years now.
I too have been stripped to an amount that I pray some good doctor will please help me, listen to and not judge I take between 1600mg to 1800mg of ibuprofen a day.
Sleep, what is that?? I get maybe 2hrs a night if I am lucky. Too much pain! Cannot stop it!
A good doctor had me on Oxycontin and 3 10mg oxycodone. I had a life back then.
I have spinal stenosis, spondylosis, herniated discs, about 5 and bone to bone in the midsection of my back. Also this monstrosity of Fibromyalgia, pain all over.
The CDC is apparently aiding with the makers of Suboxone. Tried it, it would be a laugh if it didn’t leave me crying in pain.
Opioids help us, God forbid if it were them. I understand it is hard for us to fight for our human rights, maybe loved ones, family, or friends will help us change these greed inspired new laws.
God bless the doctors who do their best to fight back also. We must call our Senators, Congressmen, we have to start somewhere.
The squicky wheel gets the oil. We must band together and speak for ourselves. Chronic pain patients are committing suicide and suffering everywhere. This is including me.
Wonder how many chronic pain patients are in jail for buying illicit, illegal drugs for pain relief??
And I mean CHRONIC PAIN PATIENTS!
Anybody done a study on that and all the dead veterans who kill themselves because of pain they now have becoming chronic pain patients
After serving for our FREEDOM!
D.S.
Our culture has an enormous problem accepting that mental illness is real, can recur, and can strike anyone. When people consume substances to make themselves feel better emotionally, they’re feeling the onset of what can become serious mental illness. Yes it’s tragic that people kill ourselves…but is anyone really offering an alternative? Instead of obsessing about what substances people consume to feel better, public officials should stick to public safety. It’s wrong to harm other people to make yourself feel better…so a person who harms people before, during, or after consuming substances needs to be locked up until the person understands that it’s wrong to harm other people. Politicians have created this bizarre legal system, in which any criminal can claim temporary insanity allegedlly brought on by substance abuse and walk free, while innocent patients are impisoned in their beds by unmanaged pain because we’re denied access to substances that are helpful. Freeing the guilty, punishes the innocent.
I will be responding to the RFI in detail. My central premise will be that opioid analgesia is now and will for many years remain a central element of effective pain management in the absence of any viable medical alternative, and that the documented risk of substance abuse and mortality associated with such therapy are so low as to be difficult to measure. I will also address (and reference) evidence that so-called “alternative” treatments recommended by CDC and even by the recent HHS Task Force on Pain Management lack a basis in rigorous evidence and must not be mandated as replacements for opioid therapy. Their primary role must be seen as ancillary to opioids, NSAIDs,anti-seizure meds and anti-depressants used off-label.
Chronic pain patients (all pain patients) must form a single-issue voting block that prohibits the re-election of every politician currently in office. Regardless of their party affiliation, stance on any other issue.
We are not being represented equitably. Our supposed political representatives are knowingly and willingly complicit in the needless torture of millions of innocent tax paying voters and the otherwise preventable suicides of thousands of our military veteranss.
We’re tired of begging for our right to be treated equitably and honestly. We are innocent of any crime, yet we are treated as common criminals without any just cause.