By Terri Lewis, PhD.
Marlene and David – The Backstory
Marlene is a single 42 year old woman who resides in public housing in southern Indiana. She has a history of substance abuse but has been free of its effects for four years. She also has a blood clotting disorder that caused a major abdominal bleed, requiring her to present to her local emergency room for pain related symptoms. Her history of substance abuse resulted in ER personnel turning her away from the department after she was labeled as drug seeking. Moreover, the abdominal bleed resulted in blood clots that formed in her legs, with amputation of both lower limbs the result. After Marlene’s amputations, she was discharged to her home with a 7 day prescription for opiates which her insurer, Humana, refused to authorize because opiates are no longer covered on her dual Medicare, Medicaid policy. The recommended substitutions were contraindicated for her rare blood clotting disorder. Marlene was able to borrow $400.00 from her family members to obtain 7 days of minimum relief. Her next appointment is on September 26 where she will be evaluated for possible changes to the medication that controls her blood clotting factors.
David, 38, is a young father of four, a five year survivor of the fungal meningitis outbreak. He still suffers from the effects of his exposure to contaminated epidural injections with headaches, vision disturbances, tinnitus, adhesive arachnoiditis and fibromyalgia. The state that he lives in, West Virginia, has battled opiate addiction aggressively causing most physicians to drop patients who require complex coordinated health supports. His neurosurgeon recommended and installed a pain pump which resulted in 3 unsuccessful surgeries for pump repositioning and a blood patch. The CSF leak remains. The daily morphine equivalent dose has been reduced to 40 MME, insufficient to reduce his pain levels. David is denied oral medications for breakthrough pain support. He spends 20 of 24 hours per day in a reclining position in a dark room. Parenting is difficult. Suicidal ideation is real. We have managed to get a follow up appointment for him at Cleveland Clinic, a travel distance of 8 hours from his home on the WVA/OH border. Because he lacks a primary care physician to coordinate his care, he must rely on this university hospital system 350 miles away
September is Pain Awareness Month
As we near the end of Pain Awareness Month, we can state with certainty that pain care in America has devolved in chaos fueled by shrill rhetoric. Camps have emerged: Government continues to issue more untested regulations (copy, cut, paste) in response to the opioid crisis. Leadership in health care organizations remain largely silently entrenched behind closed doors, refusing to take responsibility for the state of affairs, and shielded by meaningless words on paper. Advocates are organizing to box the shadows. Patients, like their elected President, are planning for war with a shadowy figure who calls them “addicts.”
Throughout this month of September, I have shared the story of Marlene and David, and tracked the destruction of their health status by an increasingly politicized healthcare system and the intersection of this devolution with pain care. Marlene and David were both abandoned by their primary care providers as ‘too complex’ once the opioid prescribing laws changed in their respective states. This complexity reflects the failure of the political environment to account for training of physicians and guiding patient experience into the design of this increasingly polarized environment that has labeled chronic illness as public enemy number one.
What has been the influence of a lack of care coordination on the total management of their pain management program?
- Marlene and David have been abandoned by their primary care and pain management physicians.
- Both have been forced into the emergency room for care resulting in missed opportunities for diagnosis with serious and harmful consequences.
- Both have been discharged to find care without appropriate treatment planning and handoff – in Marlene’s case it resulted in the loss of her leg, while in David’s case it resulted in the installation of a pain pump while there are indicators for active CNS infection of an unknown origin.
- For both, associated pain levels have been ignored, sacrificed to clinical abandonment of the obligation to consider pain as an indication for injurious processes as opposed to catastrophizing or psychological distress.
Treatment Planning and Handoff
Too frequently now, consumers who must rely on this rapidly decaying system report that the risk of seeking care outweighs any benefit they might have otherwise received prior to issuance of federal guidelines and state regulations. Many report the humiliation of presenting to a system that flags them as miscreants adds far too much psychological burden to the process of self-care and is destructive of not only their own well-being, but that of their family members who also bear the burden of failed medical supports and stigma. Too often now, the “treatment plan” takes the form of a monthly forensic investigation of the components of their urine and a pill count without concern for results, outcomes, or the impact of the UTS or pill count on adaptive functioning and well-being. Prisoners feel sentenced to a probationary period for a crime they did not commit. To what degree and how badly can this go awry? Let’s check in on Marlene and David again.
Marlene needs multiple services for the blood clotting factor that produced her hematoma which resulted in the loss of not one but two legs. No referral has been made and there is nobody to follow up on the medications she left the hospital with. She needs in home assistive technology supports for environmental modifications – there is nobody to make a referral. She needs to be fitted with prostheses and her remainder limbs evaluated for future surgical reconstruction. Her aunt is making all of the phone calls, acting as her advocate, pushing through the closed doors of her local system, learning new language and new rules as she goes. Because Denise cannot drive her vehicle and has no mobility, she is large trapped in her home, dependent on her aunt to assist with her recovery. The palliative care that she needs to coordinate her recovery, which is available to her by regulation, remains unreachable because there is no physician available to coordinate a plan of care.
David and his wife have been working with me throughout the fungal meningitis outbreak event. The teaching hospital 350 miles away has agreed to work him in on an emergency basis in the last week. After assessment and review of his severe headache, photophobia, and unmanageable pain levels, vomiting, low-grade fever, and high blood pressure to prior visits, laboratory testing has been conducted to determine sources of infection and inflammation. The infectious disease clinic is setting him up for a comprehensive review of his pain management needs including the appropriateness of the pump that has been installed but is under supported. He has returned home where he waits for results and a next appointment that will result in a 700 mile round trip. There is no physician in his community who will serve his needs.
Theory, Regulation, and Reality Testing
In both states, regulations are being written against a set of assumptions that red flags a patient who seeks care too frequently, or outside their immediate community, as ‘aberrant. The reality is that these practices are not being tested against an environment in which a number of things are occurring – blackballing of patients with complex care needs, dumping and discharge, insurance capitation, and failures to properly diagnose, treat, and fill prescriptions. This is not just a failure of a single provider group – it is a failure of an entire system of care that has been retrenched. This retrenchment stigmatizes consumers who are the most vulnerable, labeling their chronic illness as responsible for everything from the birth of addicted babies to the death of the captain of the high school football team who mixed Mom’s pills with alcohol and ecstasy after the football game. Justifiably, people are angry. Marlene and David know that their care failure is a direct result of the public conversation. And they know they are not alone.
The gap imposed by lack of access to primary and palliative care in a ‘medical home’ provided by a physician and staff who know you, your history, and your family, creates profound barriers to routine care, safety, and constructs a ladder of excessive costs provided under emergency conditions when it is too far too late to intervene and prevent harm. In both Indiana and West Virginia, palliative care is inferred by regulation, but not clearly spelled out through insurance contracts. The Model Pain law (FSMB) – which has adopted a forensic tone, fails to inform state laws of the need for either integrated care coordination or palliative care coordination, both of which have a positive impact on patient safety, cost control, and satisfaction by all parties when delivered early in the process. This gap between regulation and payor delimitations means that even palliative care may be perceived by both the physician and the payor source as end of life care. This again inserts barriers into the timely provision of effective services designed to reduce costly hospitalizations.
Both consumers are left to coordinate their follow-up care with no more than a piece of paper and follow-up instructions. There is no communication or clinical process to reach out to the community to set appoints, transfer records, or assist these two individuals with the next steps. Neither of these individuals have been informed by their insurance carriers that they have the right to ask for a care coordinator or nurse case manager to be assigned to their cases to support care coordination, identification of service providers, and to facilitate approvals for necessary drugs, transportation costs, or other things that may be needed to provide right care.
What You Can Do
In the next two weeks, we will closely explore each of Marlene’s and David’s experiences. The experience of each is going to be magnified by a factor of thousands unless several things happen now –
- Consumers must get involved in this discussion and become noisy. Talking to each other, earning from each other is one step on the path to progress. But until we start talking to policy makers about how to improve healthcare and we back it up with examples, we are not going to be effective.
- Second, we must not allow ourselves to be bullied or made to believe that our personal experiences are inadequate to speak to the public forum. Each of us have lived and continue to live with loss, the shock of displacement, and the need to survive and reorganize our expectations. We are experts at staying alive in a system that is designed to diminish our experience. Offer your knowledge and resources to your elected officials.
- Third, clinicians are having exactly the same experiences that their patients are having. Daily, they are being shamed and stigmatized and blamed for creating a problem that was designed into our system of care by persons outside the treating relationship. Together, clinicians and patients must step to the side and create a way to work through this together by refitting the model of care to its’ intended purpose.
- The evidence for this is all around us – most currently represented by the Graham-Cassidy-Heller Johnson proposal that will systematically remove chronic pain patients from access to the tools of health care. Pick up the phone, call, write, and assert your concerns to your elected representatives by whatever means you can. Enlist your friends to do so also.
This Federation of State Boards Model Policy for the Use of Controlled Substances for the Treatment of Pain is located at this link-
Model Policy for the Use of Controlled Substances for the Treatment of Pain https://www.ihs.gov/painmanagement/includes/themes/newihstheme/display_objects/documents/modelpolicytreatmentpain.pdf
A number of entities track laws associated with drug control policy and use of controlled substances for pain management legislation at the state level-
Database of Statutes, Regulations, & Other Policies for Pain Management
National Alliance for Model State Drug Laws
Academy of Integrative Pain Management
National Drug Control Budget: FY 2018 Funding Highlights. Washington, DC: Executive Office of the President, Office of National Drug Control Policy
National Hospice and Palliative Care Organization
Dr. Terri Lewis is a rehabilitation educator, clinician and researcher who specializes in chronic pain and is a frequent contributor to the National Pain Report. Dr. Lewis is writing a series of articles in September that address the big issues facing chronic pain and chronic illness patients. Her other installments can be found here.