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or trading services and patients feeling responsible for making sure their physician was also cared for has become outdated.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.
member in pain and to aiding in his or her rehabilitation.”
~ Institute of Medicine, Relieving Pain in America, 2011
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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.
and no concept of the odds against them.
They make the impossible happen.”
~ Dr. Robert Jarvik
(Inventor of the first permanent total artificial heart.)
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.