Chronic pain is a hidden illness — raging internally for those who suffer while veiled externally to meet societal norms and avoid stigma. In the United States, approximately 20 million people have long-term chronic pain so persistent that it interferes in daily life. I have personally experienced the compounding impact of chronic pain and mental health and despite the well-known connection between the two, we continue to have a health care system ill-equipped to support patients.
My condition is called thoracic outlet syndrome (TOS), an uncommon chronic condition associated with ongoing nerve impingement, significant nerve entrapment and related nerve and muscular pain. It began in 2015 with intermittent bouts of pain that within a year became constant ongoing pain in my neck, shoulder and down my dominant arm.
Fast forward to December 2021. I had major surgery to remove an abnormal “extra” rib attached to my cervical spine. The surgery included resection of my scalene muscles, cutting of my pectoral muscles and a four-night hospital stay.
A broken system
For people living in chronic pain, there is a common understanding of the toll it takes on an individual’s quality of life and mental health. For me, an independent business owner who runs a health policy firm, the challenges of dealing with this illness on top of family life and running a business were and continue to be daunting most days.
There is a high prevalence of mental health issues for those in chronic pain, yet providers often do not regularly use strategies or have incentives to address such issues, leaving millions of sufferers without the care they need. Chronic pain leads to anxiety and depression and can be associated with chronic stress, impacting the brain and nervous system functioning.
Studies have found that those who suffer from chronic pain are four times more likely to have depression and anxiety as people living without pain. Chronic pain also has enormous economic impacts, even before accounting for added mental health challenges. One analysis by the National Institutes of Health estimated annual pain-associated health costs and societal costs (including lost productivity) to be between $ 560 billion and 635 billion.
People with chronic pain feel the need to act as “normal” as possible to the external world. The brain is a powerful muscle, and one teaches the mind to ignore or push down the pain just to get through the day. Over the past seven years, I was a high-functioning professional and parent to the outside world while inside my experience was vastly different. Many days I would take meetings and calls with intense pain and would wind up in bed as soon as I finished the workday, missing valuable family time. I often judged myself harshly, asking myself questions such as: “What more could I be doing professionally if it wasn’t for this pain?” and would tell myself that I would be a much more present parent if it wasn’t for my TOS.
On the road to this recent surgery, I experienced numerous obstacles in my patient care. The most challenging were related to my deteriorating mental health as part of my chronic pain and the clinical indifference to this part of my health care. Once my pain issues became daily issues I stressed to my doctors the struggle I was having emotionally. In many cases, especially within specialty care, these concerns were minimized or completely ignored.
Even within an academic institution that had a specialty pain clinic — one that should know the well-documented connection between pain and mental health, I found no relief. In one extreme example, I sought out a referral from the pain clinic for counseling services at the institution. The response I received via email was to visit primary care. When I responded that I have not seen primary care in quite some time as specialty care for my chronic pain had become my de facto primary care — not to mention that my care in general had become a part-time job, I received NO response.
I was desperately asking the pain clinic to help me and to see the whole impact of my pain. Not only was the clinic unprepared to help me, but they also didn’t even try to problem solve with me. The stigma of mental health is so pervasive that a non-response is seen as an appropriate standard of care.
Luckily, I was not suicidal nor in need of hospitalization for my mental health issues, but I most certainly could have been one of those patients who was turned away by her provider, resulting in a devasting outcome.
Strategies to improve patient care for chronic pain sufferers
While the opioid epidemic has shed critical light on the enormous mental health impacts of physician preferences to write prescriptions versus tackling the more complex nature of pain, successful and proven interdisciplinary approaches to pain treatment do exist yet are wildly underutilized. Deployment of best practices and greater incentives are needed to address this problem:
1. Establish new CMMI best practice initiatives
As the Center for Medicare and Medicaid Innovation (CMMI) continues to partner with health systems, providers and other stakeholders to advance evidence-based best practices, an emphasis on chronic pain and associated mental health should be a priority. Currently there are only a limited number of CMMI initiatives focused on speeding the adoption of Medicare best practices such as the Million Hearts campaign and the Medicare Diabetes Prevention Program (MDPP). Like these diseases, chronic pain and associated mental health issues impact millions of Americans yet medicine does not deploy treatment interventions in a systematic way. CMMI should establish a similar best practice initiative, working with primary care, specialty care, and pain centers to advance a more streamlined approach to addressing mental health and chronic pain.
2. Test CMMI chronic pain / mental health models
CMMI invests in new payment models and approaches to care that support improved quality while reducing costs. As part of its “Innovation Center Strategy Reset, ”Leadership has prioritized the development of new care models that address gaps in care to include behavioral health. CMMI should test models that incent interdisciplinary approaches to pain treatment including in chronic pain clinics, accounting for the behavioral health aspects of such care.
While many models have focused on expanding the integration of behavioral health and primary care, we need to test incentives and strategies to tackle behavioral health within specialty care where chronic pain is more commonly an issue. For example, CMMI could expand its Specialty Practitioner Payment Model to include the specialty of pain treatment with an emphasis on interdisciplinary approaches to include behavioral health. Leveraging CMMI’s new direction for Accountable Care Organizations (ACOs) as outlined in the “Reset”, new payment and performance incentives for ACOs should also prioritize better coordination for episodic and complex care to include pain and related behavioral health care.
3. Self-funded employers should demand more attention.
An increasing number of self-insured employers are directly contracting with health systems to provide care for their employees. In such arrangements, the employer has greater leverage to establish a care framework that best meets the unique needs of their employee population. As employers and systems work together to design such models, increased attention should be given to integrating mental health into specialty care. For employers that have a significant portion of employees in labor jobs where pain and associated mental health issues are more likely, employers should demand partners include interdisciplinary approaches to address pain and mental health.
4. Update the IOM 2011 pain report
It is time to update the National Institute of Medicine’s “Relieving Pain in America“Blueprint. This report highlighted recommendations to transform pain care and education. A new report should evaluate progress towards recommendations outlined in the 2011 report and remaining gaps. A blueprint revisit should also assess the gravity of current mental health and chronic pain challenges and provide new estimates for how much these issues are costing the health care system and lost productivity today. Such a report should also evaluate the disproportionate impact on historically overlooked populations as well as evaluate potential strategies to reduce pain-related stigma in the workforce, in health care, and in state and federal policy.
The long road ahead
I attempted many conservative treatments including other surgeries before this recent one but in the end, major surgery was the only remaining option. I have a long road ahead with recovery, not just physically but also emotionally. I need to give myself time to process what I’ve been through and give myself grace regarding all the “what if’s” (what if I would have had the surgery sooner, what if I never fully heal, what if I can’t make up for the lost time).
While I will do this work, there’s much more that needs to be done in our health care system to support patients like myself who struggle every day to live a normal life with chronic pain and associated mental health issues. As part of my journey, I will give myself the time to heal from this experience but also plan to look for opportunities to collaborate with like-minded health care professionals who seek to develop creative solutions to this problem that impacts so many.
When I finally saw my surgeon for my one-month follow-up postop appointment in January I went to shake his hand with my left hand and the doctor quickly responded “no, you’re ready” and reached out for my right hand (my surgical side). At this moment, I felt a twinge of all the emotions of the last seven years saying to me “yeah you got this, you’re ready.” My doctor will never know how much his words di lui had power at that moment and is a critical reminder to all of us the importance of mental health in our overall well-being.
Mara S. Baer is founder and president of AgoHealth, LLC.