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The Past, Present and Future of Chronic Pain Treatment

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Reprinted with the kind permission of Celeste Cooper and These Three.

A Look Back and Look Up: Could History Be a Guide for Treating Chronic Pain?

First, we will explore the history of the patient-physician relationship, its effect on trust, and question how specialized medicine and advanced technology has made an impact on patient care.

As a registered nurse turned author, advocate, and patient, I have worn many hats. I have also seen many shifts in the delivery models of healthcare. However, the biggest pendulum swing affecting me is the treatment and judgment by others as a chronic pain patient. I went from a high-functioning nurse, collaborating on patient care, to healthcare consumer. I have felt judged and I have been treated differently by some. I have thoughts on why this might be.

In American history, the local doctor treated everything. Patients valued their doctor as the authority. It didn’t matter if we knew our blood pressure, because patients trusted their doctor to know what to do, but more than that, this trust was mutual. Because of this, we felt comfortable sharing our experiences including how living with chronic pain affected all aspects of our lives, and our doctor listened. Our doctor knew how chronic pain was affecting our families, our ability to socialize, our emotional and spiritual stability, and the financial impact having chronic pain created for us. Our doctor felt obliged to help us lead the most productive life possible. Physicians weren’t required to get the government’s permission to prescribe medication and other treatments. And if they saw we were abusing our medications, they spoke to us because they cared about this, too. They didn’t judge because they knew who we were before chronic pain. Today, it is unlikely the doctor treating our pain knows us at all.

With time and the human desire to explore, make things better – find a vaccination for polio, for instance – the delivery of medical care has morphed into a system of specialties and advanced technology. The days of bartering or trading services and patients feeling responsible for making sure their physician was also cared for has become outdated. So, how did we go from historic trust and physician-patient familiarity to distrust and judgment? It seems out of place to me and against the grain of what I learned in nursing school and from my life’s lessons. Living through this shift in attitude is probably the hardest thing for me to accept, because I have seen different days in my more than six decades of life.

Humans, as do animals, interact and recognize non-verbal cues by establishing eye contact. So I am disturbed that some healthcare providers no longer look at me while I talk. Instead, they are busy looking at, and documenting, on their laptop. Would the local doctor of the 19th century, the one who would take a dozen eggs for their service, ever consider it respectful to bury their head in a book while their patient was sharing their innermost fears? Would any of us be able to communicate and foster trust with someone who doesn’t look us in the eye?

Studies show there is judgment affixed to having or caring for someone in pain. Can we, as patients, and our providers look back and learn? Can we all simply “look up”? As a patient, I want to feel the warmth one can only experience through compassion, touch, and trust. I want to feel the security that is fostered when my physician comes eye to eye with me, smiles, or reaches out to touch me in a gesture of “I care.” I want to feel secure. I want a mutual exchange of information, and I want my doctor or nurse to explain things in a way I understand.

We must embrace technology, but not at the expense of becoming less human. Would Florence Nightingale think we have advanced? Would she believe we have to sacrifice eye contact or compassionate behaviors in order to appreciate the advancement in technology, specialization of medicine, or communication and trust?

As patients, we have made some changes too, but I suspect our anger, our distrust, and our own attitudes have evolved as a result of poor communication and the aloofness technology has infused into our lives. How can we effect change in our relationships with our providers? Can we simply ask our healthcare provider to see us as a fellow human being, a member of the same team? We also have ownership in this process. We too should keep those few minutes with our physician sacrosanct and return our cell phones to our pockets, treat our appointment time as we would our time with an old friend. CAN WE simply LOOK UP?

Chronic Pain in the Present – The Question

In this segment, we will explore how our provider asking certain questions, in a certain way, can open the floodgates of information that might improve our care.

Every individual has a primal instinct to preserve life and avoid pain. Our ancestors either found a way to treat their pain, live with it, or not. Things are not so different today other than the availability of advanced diagnostic tools and interventions. Despite this, the Institute of Medicine report — “Relieving Pain in America” — states people living with chronic pain are judged, discriminated against, and underserved. Most staggering of all is that approximately 100 million Americans presently live with chronic pain.

No doubt, chronic pain, and other illnesses that can accompany it, has an impact on society. However, the impact is not limited to society. We, as patients, are also affected. Scrutiny by government agencies and non-reimbursement for integrative treatments are two things that make it difficult for our providers to develop care plans. Wouldn’t it be wonderful to have a therapeutic massage, acupuncture, or other integrative therapies we know help reimbursed by insurance? At the The Center for Practical Bioethics symposium, Patients as Teachers, we learned a great deal about ethical dilemmas associated with untreated and under-treated pain. There are people who want to make a difference. The wheels of progress may turn slowly, but they turn.

“Continued emotional support is vital to the functioning of a family
member in pain and to aiding in his or her rehabilitation.”
~ Institute of Medicine, Relieving Pain in America, 2011

At the Pain Action Alliance to Implement a National Strategy, where you can now participate by clicking on the “Join” square here and scrolling down to the bottom of the page, we hope to see a movement toward a moral imperative for patient-centered pain care. It doesn’t just begin with caring organizations, it also begins with the willingness of patients to become involved. We need to give a voice to our pain, raise media attention from our perspective. I don’t know one person living with chronic pain that doesn’t want to see a change in the way their pain is perceived, judged, and treated.

Nearly every one of us experiences medication side effects, medical device failure, or invasive procedures that come with their own risks. We live with the hope that the next thing will get us back on our feet or minimize our pain to a dull roar. We are optimistic when we walk through clinic or hospital doors, but we don’t always leave that way. We become complacent because our provider doesn’t listen, or so it seems to us. We understand our providers become frustrated because we do, too.

This brings me to the type of questions every provider should ask. Each is simple and reflects the climate of healthcare in the 19th century you read about above.

“How is your family?” “What do your friends do to support you?” Open-ended questions such as these
should be answered honestly. It is important that our provider understands not only how pain affects us physically but also emotionally. Many of us have no support at home, which makes us feel isolated and alone. We become angry because we have lost control over our lives, and sometimes, we lose even more – our dignity, and our relationships with others,. We need and deserve this balance in our lives. Speak up. Ask your provider for resources on how to cope. If they don’t have them, talk with them about why it’s important to you. It will not only remind your provider you are a human being with the same needs they have, it may help them change their personal perspectives for making positive change in their practice. Research tells us these approaches influence how we cope emotionally, mentally, and spiritually, which improves they way we cope with physical pain. When we find balance, we regain control.

Management of chronic pain takes an integrative, patient-centered approach emphasizing communication, patient and provider education, and ethical preservation of our patient right to choose. These goals are a moral imperative. So, next time you have an appointment with your provider ask yourself, “What one question would I like my provider to ask?” If they don’t ask, simply say, “I wish you would ask me about…” Then ask for resources. You deserve them.

The Future for Treating Chronic Pain

In the days and years ahead, we will see information sharing between pain care providers and patients as a welcome opportunity. We will be partners in investigating new concepts and applications of therapeutic modalities. Our provider will be the leader, the steering wheel, and the patient will be the vehicle. Both will work together to keep the chassis from falling apart and the engine running smoothly.

The future offers hope. Treatment options that fit within our own moral framework will be available. When all other options have been exhausted, neither provider nor patient will be judged for their choice for minimizing pain. We know that one in seven to ten people will exhibit addiction/abuse behaviors. One of those could be us, but our providers will be acutely aware of how to identify risk and resources will be available and affordable to all. Long-term studies on the effectiveness of opioids, medical marijuana, and other centrally acting agents, such as antidepressants, and anti-seizure medicines will be available. Providers and patients will be informed and improved patient function will be the yardstick by which we measure all things.

“Spirituality is a person’s sense of peace, purpose,
connection to others, and beliefs about the meaning of life.”
~ The National Cancer Institute

Care plans will include assessment and education for healthy coping strategies, assessment of our support systems, and our providers will undergo education for meeting spiritual needs—theirs and ours. Integrative medicine, which includes both traditional and complementary medicine, will include therapies such as active-release therapy, acupuncture and ultrasound guided trigger point injection and will be available across the United States. Physicians will learn how body kinetics and the myofascia play an important role in chronic pain. And, just like water in a gas tank causes engine malfunction, providers and patients will understand the effect of nutrition on our general health, so we can expect referrals to nutritionists when needed. Massage, acupuncture, acupressure, QiGong, warm water therapy, classes for meditation, biofeedback, and movement therapies (such as Tai Chi and Yoga) will be front and center. We will be seen as human beings and will be respected for input in our care. Last, but certainly not least, all helpful therapies will be covered by our insurance providers and will be available to everyone, not just the affluent.

Our perceptions will shift from a “healthcare system” to what the Center for Practical Bioethics calls a learning healthcare system.”  Modern informatics will allow access to our data with the goal of improving outcome, and benefit/risk analysis will be individualized.  As discussed earlier, we will “look up” and we will no longer fall into the abyss of usual thinking. All those present in the modern medicine model will admit we don’t have all the answers and will exhibit a willingness to open their mind to new possibilities. We will be fearless.

“Leaders are visionaries with a poorly developed sense of fear
and no concept of the odds against them.
They make the impossible happen.”
~ Dr. Robert Jarvik
(Inventor of the first permanent total artificial heart.)

Conclusion:

In this partnership, we will open our minds and hearts to new possibilities. Our healthcare provider will lead the movement for patient-centered care by embracing the power of communication, trust, compassion, and touch. We will work together in learning how the mind affects the body and we will join hands as facilitators to share the news on this phenomenon. We will all play a pivotal role in the way pain is perceived, judged, and treated as set forth in the Institute of Medicine report, “Relieving Pain in America.” What we do today to change our perceptions will affect the future of pain care for the 100 million Americans who suffer daily.

This is not the end; it is only the beginning.

_________________________

About the author: Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body, Wounded Spirit, Balancing the See Saw of Chronic Pain, Fall Devotions devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD) She is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy. You can read more educational information and about her books on her website, TheseThree.com.

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6 thoughts on “The Past, Present and Future of Chronic Pain Treatment”

  1. r1r1r1r1 says:

    The future in medicine and pain care will be a lot like the past if left to the designs of those who wrote the IOM report pain care in america and the center for practical efforts. And dont they know how to “pack the house” and conflate their own interests and occupational strategies as synonomous with the public good. But the simple facts-which anyone can see is the aforementioned are largely interested in expanding the opiod economy. They are not patient centered as they claim, but medicocentric. They know little about “alternative therapies”. Just look at the National Pain Strategy being developed currently- see how much attention is being paid to opioids. See the failure of the aforementioned to specifically state how they will be patient centered. In addition, the IOM report indicated that they dont belive in curative treatments- and numerous books by people in pain indicate they not only believe in cures for LUpus, MS. fibromyalgia and Lyme disease- but were cured. What Ms. Coopers group wants is to make people more dependent on a “new and improved” opioid centered model of pain treatment where they will tell you to include”meditation” or yoga- will they get someone to pay for the person in pain to have structural yoga therapy or learn to do lovingkindness meditation- no, of course not.
    Ms. Coopers group has not become the change they wish to see in the world- they are imposing their occupational strategies on the public-without are advice and consent. They believe all people in pain have psychological problems and believe anyone in pain seeking to be cured is misguided.
    Im Sorry MS Cooper- you and your friends will ensure the future will be much like the past and will continue to serve private profit instead of the public good.

  2. ArthurC says:

    Opening the treatment of pains to non-mainstream medical practices would be a major shift in public health policy. Qigong can bring many benefits to people suffering from pains, in China for example, but it usually meets with skeptical reception in western societies.

    A special branch of Qigong called “Informatics Therapeutic Qigong (ITQ)” has been practiced by Master Zhao of Fremont, CA, and his students here in USA and in China since the late 1980’s. People only need to have open mind to experience something non-traditional but yet offers to relieve or reduce the pains.

    Like most non-mainstream practices, ITQ is not easy for the general public to understand. But thousands including myself have witnessed its magical effect. I would encourage your members to experiment with this treatment as well if the current treatment has not brought satisfactory result.

  3. lori763 says:

    The latest neuroscience research strongly supports “mind/body” connection of pain. It is a mistake to equate the psychological component as “weakness” or being a “hypochondriac”. The brain is wired for our survival and it adapts to chronic pain in a variety of ways. It is very beneficial for individuals who are suffering with chronic pain to investigate the mind’s contribution/adaption to the experience of pain since it will lead to feeling some relief. For more information on this topic check out the research of Dr. Mark Jensen and Dr. David Patterson or go to adptherapy.com

  4. goldenmain517 says:

    Pharmacist Steve is absolutely RIGHT!
    Until we get the government out of our healthcare, especially
    Pain management? We are going to continue suffering!
    Filing complaints with the ADA and following his directions from his blog on doing this, and it has be a massive amount of people doing it! A complaint for every single pharmacy denying or refusing to legal prescriptions and getting the DEA and law enforcement away from harassing the doctors so they can feel comfortable treating pain, we are lost.
    Our current legislators don’t care about the suffering. Neither party is paying attention.
    We have been telling all pain patients to do this but I don’t feel they are doing this. At least not in sufficient numbers.
    patients freak out when they can’t get their medications filled. When they finally find them? They do nothing and then it happens again because they are helping to fight for our rights to get the changes made.

    I hope pain patients get busy and get these done, or we are doomed.
    Please.. ? Go to his blog and file these now.

    Also there has been talk in the news about the AMA getting involved to change legislation to get the pharmacy guidelines changed so they must accept a legal prescription from a MD in good standing and accept their diagnosis. Medical doctors have much more education and now days with pill mills gone? They are being laughed at by pharmacy because the pharmacist have more power than the doctor.
    I hope all medical doctors join in with this plan because so far? The pharmacists are NOT listening to them either. They are NOT medical doctors and most feel no remorse allowing the patient to go into unnecessary withdraw and even more extreme pain!

    Donna Ratliff with FFPCAN

  5. r1r1r1r1 says:

    It is time for our society to say no to ineffective and dangerous treatments like opioids and anti-inflammaatories which together cause over 33,000 deaths a year. Opioids are not the only bad kid on the block. Ineffective treatments by poorly trained chiropractors, pt’s, psychologists, doctors, pain specialists, “alternative practitioners” should not stand. As a society we have been all too focused on the profits, power and prestige of professionals providing pain care and too little focused on the people they are supposed to serve.
    It is time to replace capitalistic pain care with humanistic pain care. Ms. Cooper and her group would like to put a happy face on old wine in new bottles when it comes to pain care. We need to see things as they really are if we are willing to create a boldly better future for people in pain. The NAtional Pain Strategy is not a vision of a better future for people in pain- it is a cartel of professionals who get together to promote their own interests-many of their cartel have been under investigation for their role in the opioid economy. Lets throw their opioid pacifier away. Get rid of ineffective and dangerous anti-inflammatories that lead to bleeding ulcers and sometimes lymphoma. Lets us dream boldly of a much better vision for people in pain and leave the past mistakes behind.

  6. serenebeth says:

    It’s sad to see such negativity in the comments posted thus far to this hopeful, visionary article. I’m not sure if pain patients realize that Ms Cooper is one of us, in addition to having the expertise of being a nurse. That affords her a unique way of seeing the situation. I have the same qualifications (I was a Nurse Practitioner & I have all the same illnesses) & I am able to see the situation exactly as she does.

    Sure, I’m dissatisfied with the way things are currently: Having to pay out of pocket for every intervention which seems to help me, like massage & craniosacral therapies, a special yoga class for people with FM & chronic pain (I’m lucky to have found it!), multiple supplements & a number of neck warmers, meditation CDs, books & the like. It all adds up to thousands of dollars. And I still don’t have the perfect regimen –even after 15+ years of trial & error. I still live with some pain & a lot of fatigue. But I am continually seeking answers. I give new ideas a fair shot. I treat my mind, body and spirit.

    When Ms Cooper speaks of the future, I wonder for myself…. Why can’t I have a Plan of Care stating what I actually use & have my Medicare (I’m disabled)/secondary insurance cover these specific things??! As it is, I must pay those premiums, then pay for what I REALLY need on TOP of the insurance (which covers very little of what I actually need). Another example: The next thing I’d like to have done is genetic testing. Personalized medicine is the next frontier & the only way to tell exactly what my status is regarding methylation defects, among other issues I personally have a vested interest in. Will either of my insurances pay for that? I’m not holding my breath! See, the results would guide my advanced nutrition choices. Right now I feel as if I’m wandering aimlessly as far as the proper diet choices (aside from the obvious things). But I’m talking about taking my health from “just getting by” mode to “actually improving” mode! We all know how amazing that could be for our lives! What would you do with your extra energy? I have big plans for mine!

    What the author speaks of is truly where healthcare is going. It may take longer to get there if we aren’t honest partners with our providers. I realize it’s a challenge these days with such brief encounters. Try the newer option of e-mailing with your doctors to let them know your realities. We have the power in numbers –if we speak out, that is.

    I don’t have all the answers to all the politics of every organization, but I do know that the more we patients just honestly speak our truths, without the aggravation of despair & anger, the more true understanding & real change will occur. We will be taken more seriously & be better respected, too, if we are doing everything we can to be responsible for our own health & well-being. As much as it feels like we want to some days, we cannot just throw up our hands or throw in the towel. Every day is a new day to take some sort of action for your situation. Even if it’s just a nap.

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