By Terri Lewis, PhD.
The National Pain Report has been asking some leaders for their views on the state of chronic pain treatment at the end of 2017 and what to expect in 2018. No review would be complete without the thoughts of Terri Lewis, PhD - the mother and daughter of chronic pain sufferers who has been extremely critical of the public health response to chronic pain treatment. Here’s an interview we did this week.
National Pain Report: “Terri, this has been a chaotic year for many chronic pain patients-due to the “crackdown” on opioid prescribing. Realistically, what can the chronic pain community expect in 2018?”
Dr. Lewis: “This pendulum swings widely and slowly. As a result, it targets everything in its path without consideration of causation. We have the additional burden imposed by rhetoric being fostered by policy makers who are simply uninterested in scientific practice or causative associations that lead us to more effective solutions. It’s bad enough that we have to slice through a poorly performing healthcare system, now we have to strip away the cobwebs of disingenuous fear mongering in addition. Everyone is looking for the simple and quick solution. There isn’t one.”
“That said, consumers are beginning to organize and speak out, collaborate and act on the power that they have as consumers in this poorly performing system of care. I expect this to continue. And the same thing is occurring for practitioners who are concerned about the integrity of the care they provide to consumers. I expect to see practitioners and consumers come together in the same space to build on the demand for a system of care that is accessible, helps, and reduces harms.”
“I also expect to see various sectors of the health care industry begin to attack the siloed healthcare system that is imposing unnecessary barriers to access. Pushback is coming as is conversation across the communities – addiction treatment, pain care, mental health, preventive medicine, allied health.”
National Pain Report: “We at the National Pain Report have been struck at how little attention is paid by the opioid critics to alternatives for chronic pain sufferers who use opioids responsibly. Why aren’t more talking about ‘if not opioid then this’?”
Dr. Lewis: “Quite frankly, our national attention is diverted away from effective care by a conversation focused on the CDC’s disastrous rollout of prescribing guidelines. While our attention has been consumed by the negative impact of these guidelines on the local practice of medicine, it has also taken all of the air out of the room when it comes to focusing on determining effective interventions, processes and measures of effectiveness. We’ve allowed ourselves to become focused on attacking others rather than attacking the problems before us.”
“This is not a unidimensional problem – it includes patient education, prevention, communication between patients and their physicians, informed consent, treatment, and outcome management. All of these issues are influenced by decisions made by others who have no direct stake in the patient outcomes – insurers, policy makers, and sales forces for drugs and interventions. All results are not equal, but the only results that should matter at any level are those that lead to effective outcomes for consumers. Everything else is secondary to this. When outcomes are right then the indicators that feed this are also lined up appropriately. And so is the money and public policy.”
“While it appears that this system has changed dramatically in a short period of time, in fact this has been a long time coming. Most consumers are not educated on these changes and how they are impacted by them. They know things aren’t working, but they don’t know why. Fighting city hall is a big job and none of us, including physicians, expect to have to go to a city council meeting in order to obtain permission to make a health care decision about our preference for services. Our failure to account for problems in the system over time has allowed this entire system to become designed for failure of health care delivery and protection of health care institutions – and that is intentional. We have applied band aids and gum to the rising design problems rather than addressing root cause and policies that are not working. Multiple gates and barriers have been installed to slow down health care utilization and the outflow of cash with little concern for quality or effectiveness.
Rather than spending the right money for the right pain care delivered to persons with complex needs, we are focused on managing dose, counting pills, rationing appointments, and measuring conformance to indicators that have almost nothing to do with health outcomes. The amount of waste, rework, and secondary harms is phenomenal, observable, measurable.
We need to comprehend and own this. We need to wage the battle for right care delivered equitably and in a manner, that reduces fraud, waste and abuse. That begins with educated consumers.”
National Pain Report: “You are a leader who has been urging people to organize at the state level. I’m struck by the comments of the readers - how many of them seem to have almost given up. What do you tell those folks?”
Dr. Lewis: “My statement is this. This is hard work. Get on the train or get out of the way. Get involved or accept the results without complaint. I am perfectly willing to tell folks exactly what none of us want to hear. The world is changing and we have to change with it.
We have the tools to do this. Engaged patients can make a difference. Those who think it is too hard or who refuse to get involved will get left behind the door in their communities - and their communities will function more poorly for it. It is as simple as that.
We must not allow ourselves to be invisible and we must exercise every political tool that is available to us. But first we have to understand that our participation in the fight for our future will shape local results so long as states regulate the practice of medicine. Because our care providers are regulated by state Boards of Medicine and licensure, we have to build effective working alliances at the local level and in our doctor’s offices. Doing so means changing our behavior under the most difficult of circumstances. We have to become involved in reshaping a healthcare future that is adaptive and responsive. And care providers and consumers have to do this together because at some point, we are all consumers in this system. Nobody ever said that living on this planet was easy or that life would be fair. But we can make our healthcare system more equitable – and that is worth working for.”