The States of Pain Regulation: What About Discharge & Follow-up?

The States of Pain Regulation: What About Discharge & Follow-up?

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

Terri Lewis, PhD

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

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.

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Authored by: Terri A Lewis, PhD.

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Angelica Heavner

Unfortunately this is very accurate. For the one who said every doctor has to accept Medicare and Medicaid, that is not accurate. I am in WV also and for the past almost 7 yrs I have had to pay out of pocket for pain management because they do not accept either or any insurance from the “health market”.
I Also have to go out of state for my pain management doctors, which is an hr away. The only doctors in my state that would accept the insurance is 4 hrs away, one way, and they already told me the first thing they will do is take me off all meds and start over again. I have been stable for 4 yrs on my current dosages. There is no way I can come off my current set up and go back to square one. I refuse to go back thru allergic reaction after allergic reaction until they go back to what I am on now. Each reaction to a med, I would have to wait a mth before starting another med, not counting the er visits which caused my disorder to begin with.

They need to stop screwing with doctors and patients and deal with drug dealers and the schools who push hyperactive meds on almost every child in school today.

Terri Lewis

Until just recently, Marlene has not had a PCP or a pain management specialist.
She was abandoned by both, which is why she relied on services from the ER.
She now has the services of a hematologist and will be referred to Cleveland Clinic for a comprehensive workup.
You are correct that she can make changes to her Medicare/Medicaid and Part D configuration.
Many folks don’t know that.
Wherever I can, I recommend that folks return to a straight Medicare policy with Medicaid as the secondary and Part D over an advantage plan.
Seems to work out much better for our population of users.


Hi, to all those suffering in CHRONIC PAIN! I’miss a 43YR. old male who injured lower back and had a fusion done at L4-L5. I have been on pain medication since then do to failed low back fusion syndrome. I’m commenting on this because I’m in same situation. I have been scrutinized since day one but when my doctor retired in 2015, I came to a full understanding of the changing laws that are now causing me to fight for myself but more importantly my family. I have been, I guess you would say, in the eyes of the uneducated and ignorant law makers ” a model patient”. Bounced from one doctor to another and unable to LIVE without opiods do to failed back syndrome I finally found a doctor that understands my situation. Now he and I are in a fight for my survival. Just so everyone is aware CP has destroyed my life in many ways, failed marriage, lost my kids, failed relationships, amongst of other life changing events and all I’m asking for is a little compassion. So here lies the problem and the fight for survival. I’ve been told by my doctor that come jan.1st my medication that’s been allowing me to have some sort of life and surviving suicide is going to be cut back from a level that has worked for years to some magic morphine equivalency number that will all but keep me from being bed ridden. My doctor informs me last week that I might want to see about a morphine pump for my back that his hands are being tied when it comes to treating his patients to their individual needs. I have no idea what I’m being pushed into but Im out of time and really don’t need the risk of another surgery that I have read can have bad consequences and cant afford. Government officials need to allow the CP community to have a voice but thats not going to happen. I have all but given up. I have written my suicide letter to my boys why and explained to the one person in my life that has compassion and understanding, “my mother” that noone cares and Noone is listening. Will the government ever stop impeding upon patients rights. I’m out of options, and all I have in this world, im in jeopardy of losing. This is a health care crisis! They got that part right but the crisis is the pain patients who suffers daily. Please everyone reading this needs to reach out to all the people they know and get them to write there government officials and stop the under treating and the suffering, in ways most can only imagine, because one day it could be you. GOD please bless America and our officials who handle these decisions


The only positive is that these patients are entitled to millions from the doctors and the state regulators who failed to follow best practice. That should allow these patients to afford private care out of state, but this is still unacceptable.


Terri, doesn’t Marlene have a PCP and/or other doctor she sees for her blood disorder ? Almost all doctors accept Medicare/Medicaid. Her regular doctors would be the ones to help her get the care she needs.

Since Marlene has Medicare/Medicaid, I assume she also receives Extra Help with Medicare Part D. If she does, she can change her Medicare Part D Prescription Drug Plan anytime. She needs to so this ASAP. She also needs to check the Medicare Part D Plans and verify they cover her regular medications and opiates.

David Cole

What a great article, unfortunately this is going on all across America. I find it so hard to understand how a doctor could let this happen to people. As far as I’m concerned doctors have turned into nothing but lying cowards. I thought I had it bad, after reading these stories, I became physically ill. How can this happen in the greatest country of this world. Truly makes me think it’s time to put more time into fighting these ignorant criminals. As far as I’m concerned any doctor that doesn’t treat his patient with respect and take care of their needs needs to be put in jail. Thank you Terri for standing up for everybody.


This article points out quite well what the intractable pain patient is dealing with in today’s scare on opioids. I am amazed that when my Mom wrote to the CDC about my case they said they couldn’t talk specifically about my case but to remember that their paper was only meant to be a recommendation. If this is their stance, then why are they not out in public advocating for the people who do need opioids to survive. I see no way to survive if the recommendations all become law. Even people that I have talked to in palliative care are not getting enough pain medication to make the day bearable. It is quite possible that there may well be many, many suicides as these “meant ONLY to be recommendations” become laws. I could not survive on 120 MME. I take 9 times that due to genetics and I spend 23+ hours in bed just to keep the pain manageable. I fear what death is, but I know that will become my only option unless I wait for the pain to kill me slowly and in awful circumstances, which I fear even more.


I wish people would more people understand. I myself broke my ankle in 3 places, dislocated it to where it was hanging off backwards. Had it operated on three times since 2010. I have a failed CTR in my left hand and CT in my R hand. Golfers elbow and tennis elbow in both arms, runners knee in both knees, sciatica from a back injury in 2003 that frequently dumps me on the ground still to this damn day. Something is wrong with my Achilles.. Possibly tendonitis ( currently awaiting an or tho Appt) And I’m and active mom. I have no choice but to be. But its hard when I have to admit I’m in pain and my kids look at me and say mamas hurting again just by the look on my face and even with stacks of medical records, special medical equipment, and scars to verify some doctors and people think its all a joke. This is a good article. Thank you for your time and efforts. Sometimes it just feels as if no one is listening. Specially when you go to a pain magement doc and she kind of laughs in your face after she has spent the whole visit blowing you off and refusing to request any records.

Frances Turner

Until a figure or entity emerges from the shadows to represent the chronic pain-suffering community — and there are many of us — I don’t see much to keep us from being swept away by the War Against Relief of Pain (WARP, my own misnomer). The obvious reason is, many of us are crippled, thus prevented, by the very condition we want to fight - pain - but are unable to because of the pain.

Cary Cassell

Have been very noisy with my state and fed representatives. They have heard from other patients but only seem to value drs opinions which have not been forthcoming. I am encouraged to advocate for myself by by the few drs who still know me well but they are silent and my voice has meant nothing.This has been going on for years now my time and health are literally running out. Ive done nothing wrong but be the victim of a incurable crippling disease.


Well written, empathetic, and knowledgeable article. Thank you from the bottom of my heart for fighting and educating.