Editor’s Note: Terri A. Lewis is a Ph.D. who is an expert in Rehabilitation Administration. She’s also the mother and daughter of chronic pain sufferers. She has submitted some compelling testimony to HHS for the National Pain Strategy. When I read her comments, I contacted her to find out more about her. Here’s part of our interview. More will come later. But we thought, in advance of the May 20 deadline for comment on the NPS that we wanted to share her thoughts now.
You come to this chronic pain issue as both a Ph.D. and a mother. Can you explain your passion for this issue?
I have made a career out of working and supporting persons with disabilities who are un-served and underserved by our various helping systems. Our public programs serve a very narrow window of individuals who actually need service system supports, and there have always been very large gaps in our approaches to this population. This leads us to both underestimate the range of issues and needs, and prevents us from developing the appropriate responses to community systems design and allocation of public resources. This is not good for us as a country or as a population. As a scientist practitioner it is fairly easy to understand that this is unsustainable as a matter of public policy.
In my own life, my father dealt with chronic back pain his entire adult life and my son inherited his problem. In my son’s case, the onset of Osgood-Schlatter disease at 13 followed by a broken undetected spondylolysthesis and pars defect at 15 completely destroyed his middle and high school years. From the ages of 15 to 30 he experienced three multilevel fusions, each bigger than the last, with life changing pain, impairment, and socially constructed handicap. To have had the opportunity to observe the natural history of pain in two family members has forced me into a position to be far more alert to this as a latent issue in the population at large.
You wrote some compelling testimony to the HHS regarding the National Pain Strategy which we will link on our website. For our readers who are not going to look at the whole submission, what’s the summary of what you urged HHS to do in the National Pain Strategy?
It’s time to widen our evaluation of this problem and place it into a socially adapted model and framework that asks this question: “what is the impact of our failure to properly treat the person?” If we ask that question, the only metric that is reasonable is associated with measures of impact upon how that person continues to function in their community as the result of the problem we conceptualize, the treatment we recommend, and the intervention they agree to as a result. Consistently we fail the individual at the front end by over promising results (symptom reduction) and under delivering on the relationship of treatment intervention to community function (recovery failure). Our assumptions, heuristics, and metrics must change because the existing data tells us that it must.
Six areas addressed in the draft National Pain Strategy (2010) are: (1) population research; (2) prevention and care; (3) disparities; (4) service delivery and reimbursement; (5) professional education and training, and (6) public education and communication. We need a system of integrated care that addresses and coordinates prevention, treatment, rehabilitation, and research. We need to examine the integrity of our population data against the periodic auditing of patient data and comparisons to whether our treatment interventions for chronic pain allows consumers and their care partners to exchange and transact with their community resources through working, participating in social groups, and attending the school functions of their children. We all need to get on the same team and work toward solutions that benefit all of the stakeholders to this problem.
You said what is missing in the NPS (and perhaps the medical system writ large) is “fundamental skepticism.” What is it that patients should be skeptical about?
Consumers must have a seat at this table. We should all be very skeptical of the ability to be properly served by a system that will not treat us as the primary stakeholder to treatment outcomes. Treatment providers must have the freedom to re-educate themselves and call the systems to question when current efforts don’t produce projected results. As Einstein said, “the definition of insanity to engage in the same behavior over and over again and expect a different result.” Just as we routinely install handicap into the lives of persons we fail to properly treat, we have installed deviance into the institutions that treat them. And we’re not questioning why both have become ‘normal outcomes’ for our very expensive and ineffective interventions. The type of pain care that supports deviance as an acceptable outcome is a huge consumer of health care dollars, and serves as the palliative medicine for minds that are asleep at the wheel of innovation. Where else would we accept that? It only took 13 car accidents with failed brakes before the government called GM into question, yet every day we have a plane load of people crashing due to patient harm and our eyes are rolled up in our heads so we don’t have to see it.
Editor’s Note. The time to comment on the National Pain Strategy is dwindling. You must comment by May 20. Here’s a link.