Accessing the System of Care: Is Every Door Open?

Accessing the System of Care: Is Every Door Open?

By Terri Lewis PhD.

Terri A Lewis, PHD

Terri A Lewis, PHD

Substance use disorders occur when the recurrent use of alcohol and/or drugs causes clinically and functionally significant impairment, such as health problems, disability, and failure to meet major responsibilities at work, school, or home. According to the DSM-5, a diagnosis of substance use disorder is based on evidence of impaired control, social impairment, risky use, and pharmacological criteria (SAMHSA.gov).  Included in the list of substances that can be routinely abused are alcohol, tobacco, opioids, cannabis, hallucinogens, stimulants and over the counter medications.

Opioids are routinely used to quell the symptoms of cancer and noncancer-related chronic and chronic intractable pain. They successfully reduce the perception of pain for some (but not all) individuals, allowing one to achieve some modicum of functionality throughout their days. Used without proper supports and education, they can also produce drowsiness, mental confusion, euphoria, nausea, endless constipation, destroy the liver, and, depending upon the amount of drug taken, depress respiration.  Symptoms of opioid use disorder may be reflected in people who are not properly supported in the use of these medications and show up through behaviors associated with euphoria, attempts to magnify the drug’s impact by crushing, snorting or injecting them or combining them with other substances or over the counter medications.  People who are under medicated may cut their medications in half to extend their availability or alter their dosing schedule – both lead to poor treatment effect, increase the appearance of reduced functionality, and may lead to conclusions of substance abuse.

So what do we call it in the current environment when the purposeful under-prescribing or withholding of schedule II medications results in clinically and functionally significant impairment that increases health problems, disability, and failure to meet major responsibilities at work, school, or home?

What is it called when forced reduction or replacement of medications which have allowed you or your loved one to function result in substitution with placement prescriptions or the use of OTCs with little or no therapeutic benefit?

What is it called when you’ve tried every alternative available to you and nothing is working for reasons that are beyond your control?

According to the accepted definitions, this condition amounts to what the system recognizes as ‘substance abuse’ (or torture, or a violation of human rights depending on your mood). In this case, the abuse is imposed by clinical and therapeutic prescribing practices derived from poor system capacity, incomplete provider clinical knowledge, misapplied regulation, or inadequate system capacity due to poor planning.  And it’s a real problem that we all know is the elephant in the room.  While the blind men are arguing about the pieces and parts of the elephant, consumers have to survive.  And so do clinical providers – it is imperative that we get focused like a laser on the same things.

As state regulations are being installed that limit prescribing practices to specific MME thresholds reduced or substituted from prior successfully maintained regimens, patients find themselves forced into rapid reduction to arbitrary dose levels as the result of clinic closures, prescriber fears, and the imposition of ‘fail first’ routines.  This puts patients at risk of looking for alternatives to palliation just to cope with the change – alcohol, tobacco, over the counter medications, unregulated (and in some cases unsafe or illegal) herbal compounds, and so forth. This adds to vulnerability and increased risk of harm.

Whatever one believes about substance abuse, addiction, or treatment for chronic pain, the current climate requires us to be alert to the emerging problems of care delivery because they lead to errors – of assumption, practice, and data collection. They harm consumers in ways that include:

Errors that occur due to misalignment of federal and state regulations.  There are substantive conflicts between federal Medicare, state Medicaid, and private insurance regulations and emerging state laws. A change in patient eligibility criteria can have catastrophic access to care consequences.  Where requirements are emerging that primary care physicians to turn their prescribing roles over to Board Certified Pain Management or Addiction specialists, the patient loses long-standing working alliances, even as specialists will be struggling to serve more complex patients with fewer resources. There is after all, only so much one can accomplish in 15- to– 30 minute office visit.

Errors that occur due to handoffs from one insurance plan policy to another.  Your primary and pain management providers may be members of insurance plans that impose widely different conditions which have the possibility to lead to no treatment, reduced treatment, long waits for treatment, wrong treatment, and inconsistent demands placed upon your pocket.  In some cases, insurance policies will not pay for monthly pain management visits or urine tox screens, and your existing regimen of pain management may not readily transfer due to policy constraints.  The same may not be true if the frequent urine tox screen is provided by a facility treating substance abuse.  Some providers are already refusing to accept patients who do not have the resources to completely comply with treatment conditions.

According to Medicare.gov, “medically necessary” is defined as “health-care services or supplies needed to prevent, diagnose, or treat an illness, injury, condition, disease, or its symptoms and that meet accepted standards of medicine.”  Disparate definitions for determination of medical necessity for treatment may significantly impact how one transitions from primary care to the care provided by a Board Certified Pain Management specialist. The regulation of medicine is managed by state Boards of Medicine who find themselves increasingly determining policy against a political rather a medical standard of care.  How your primary care physician prepares your medical records for this handoff is important – accuracy, communication, and collaboration are critical.

Between policies, drug formularies may not account for your particular combination of medicants – thus forcing you into alternative medications with which you have no patient experience – your receiving physician will have no initial basis to judge your response to treatment and may reset your regimen of care. This is referred to as step therapy or ‘fail first.’ Some insurers (Cigna) are now asserting that they have responsibility to reduce opioid prescribing by increasing benefits for alternative services.  Until Center for Medicare Services follows in this fashion, we are unlikely to see a consistent approach to coverage.

Errors that occur due to geographic variations of regulation across states. Your residence address and medical community may cross state lines with conflicting state regulations. As of yet, Boards of Medicine have not established reciprocity agreements. Your primary care provider may have an address in your home county but your pain management provider is located across state lines – this could well require you to substitute specialty services or obtain lesser treatment for half your problem because of gaps in criteria eligibility.  For instance, the depression that often accompanies complex pain syndromes may be eligible for mental health services.  But in the absence of a pain management physician, your mental health or substance abuse provider will not treat you for pain or even grasp your distress. Or, your mental health physician may substitute antidepressants and antiepileptics for treatment of pain – which in turn leads to significant problems of polypharmacy without reduction of symptoms. At the extreme, your substance abuse provider may withdraw all medications entirely, theorizing that your use of schedule II narcotics is due to substance use disorder.  How this is perceived is very likely to reflect the practitioners orientation and training and not necessarily your characteristics, history, and needs. Your referring physician has an obligation to determine the qualifications and capability of the person they are referring you to.

Underserved patients with chronic pain are just as likely to be negatively labeled with red flags as is the person who has an active substance abuse disorder.  This is a function of systemic error, not a function of patient misconduct.  It places the patient at risk of unnecessary harm and vulnerability to substandard health care practices.

In a time when reduced service leads to federal reward for reducing the cost of care, how should we cope with this transition?

  • Examine your medical records for accuracy and completeness. If you can’t do it, ask someone you trust to do it. If there are errors in your records, ask your provider in writing to correct them or delete wrong information.  You have a right to accurate records and to control what information is released to whom.
  • Make sure you have an advocate or family member with whom you can share your medical information. Make sure that this is updated annually.  Have them call to test the records management system in your provider’s office to insure that their name pops into the appropriate fields of information.
  • Obtain a copy of your insurance policy. Know what it says. If your care needs are complex and require coordination across providers, contact your insurer and ask them to assign a case manager to you who can be available to help with coordination of services.
  • Educate yourself about your service system options. Across the systems of care, criteria for access to services are different.  While we should be able to work from a position of ‘every open door,’ we are not there yet.  There are significant limitations between primary care, specialty care, substance abuse treatment services, mental health care, and other systems.  The service system is not seamless.  Insurers change their catalogs frequently.  Providers drop in and off.  By law, insurance carriers are required to keep this information current – so far this isn’t working uniformly.  You have the right to insist on treatment by a provider who is qualified to meet your treatment needs.  If the person you need is not on your insurance catalog, ask them if they are willing to be added to your plan and insist that they be added.
  • Some insurers are operating from a position of ‘capitation’ – collecting premiums for services and service providers who are in fact not available to patients – they not taking new patients even though they are on your plan, are on your plan but are not qualified to treat you, or who may have a ‘checkered history.’ You have the right to receive safe treatment from hospitals and healthcare providers who are qualified to treat you and who do not have a negative history associated with patient harm. Check your state licensing registry for information about complaints that may have been filed or are pending against treatment providers.

New behavior is required of consumers as this system is shaking out. We have the right to expect communication between the sectors of our healthcare system.  How we respond to these changes has a lot to do with both how we cope in the short term, and how the system responds and corrects itself based on real practice evidence.  Here are some helpful resources to help you understand minimum requirements:

National conference of state legislatures  (Review your state’s pain laws)  http://www.ncsl.org/research/health/preventing-prescription-drug-abuse-pain-clinic-regulation-postcard.aspx

Federation of State Medical Boards (Here’s where you file a complaint for abandonment, poor care, or lack of provider availability) https://www.fsmb.org/state-medical-boards/contacts

National Association of State Insurance Commissions (Contact your state if your insurance provider is not meeting their contract terms) http://www.naic.org/state_web_map.htm

Center for Medicare Services Handbook  (The mothership – everyone copies these requirements) http://www.ncsl.org/research/health/preventing-prescription-drug-abuse-pain-clinic-regulation-postcard.aspx

National Association of Medicaid Directors (State Medicaid programs requirements)   http://medicaiddirectors.org/

How to find out whether your insurance carrier has competent health care providers in their catalog (Lookup a provider or health care facility)  http://www.nolo.com/legal-encyclopedia/how-find-complaints-against-doctor-hospital.html

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Authored by: Terri A Lewis, PhD.

There are 12 comments for this article
  1. Chrystal at 3:04 pm

    Undertreatment of pain can certainly cause a person to supplement with alcohol. Then you are labeled an addict. If medical doctors had the same educational hours required of veterinarians we chronic pain patients would not be facing such archaic choices. Titration to effect, which does not mean zero pain, but rather it means the maximum pain relief that can be achieved by opioid medications, chronic pain patients would have no reason to seek other substances to help lower our pain levels. Educating primary care physicians on Pain Care basics is a necessity for those who live in rural areas not accessible to big cityy Pain Management specialists.

  2. Zyp Czyk at 3:58 pm

    Great article, Terry, pointing out how many frightening scenarios can arise from this kind of political interference with our medical care.

    It reminds me that there are 440,000 deaths every year due to medical errors, which will only increase because the problems you point out fall into that category. But once they become “medical errors” they magically disappear because no one is doing anything about this far greater real crisis.

    Instead, all the attention is on the fabricated crisis of opioid overdoses that is killing about 1/20th as many people as medical errors. At least we can make choices to avoid an opioid overdose, while we have no control over whether we suffer from a medical error.

  3. Em Raven at 12:30 am

    Wonderful article that is exactly on point.

    I will say though that this situatuon isn’t limited to schedule II+ medications. I and others are now being denied things like tramadol and a lot of pain and non pain people are losing their anti anxiety meds that also allow them to function. We all need to beware that this extends much further than a single class of meds… it is all meds that are considered controlled that are prescribed for various reasons, though pain care is seeing the brunt of it.

  4. I.Hollis at 7:19 pm

    Thank you Dr. Lewis!
    Your articles are always so informative. I think the acronym SAD is “sadly” the true state of affairs! This new practice of intentionally under-prescribing for painful conditions, or pulling medically stable patients off all medications IS torture!
    Making those with genetic differences of metabolism, UM, PM of cyp2D6 fit the guidelines will bring tortuous pain for these people. One size doesn’t fit all! What a mess that will be trying to get those patients to fit set guidelines…it’s just not possible, they will be purposefully under-treated and the science denied. Just so unnecessary and cruel…..They aren’t looking at collateral damage all this is causing. No good reason for it!

  5. Krissy at 4:19 pm

    Wonderful article! I believe the pain community is in real need of the kind of information you are providing here, especially now with uncertainties looming in so many parts of the sphere we are in. Thank you for this! More information like this in articles is, I believe, a great way forward to inform patients who feel a bit lost. Whenever you write, I always learn.

  6. Mary Dunigan at 2:30 pm

    Thank you so much for writing this article! You could not be any more on point! This topic needs to be on the forefront and it takes people like you to do it! Please tell us what WE can do if you can? People are going to die and Holly is right, the deaths will be attributed to substance abuse! I have never abused any substance let alone a pain medication. Yet after more than ten years of responsible med taking I was thrown into the arms of a terrible pain clinic after my PCP retired! A young new med school grad quickly decided I should be red flagged as an addict for cannibus usage which I informed them of when I started. I have been very forthright about the medical benefits and always had. They told me I was not able to use both and “discharged” me form their clinic with a list of OTHER pain clinics! The immediate withdrawal of the opiates caused me to go into severe withdrawals and pain levels that led me into a hypertensive crisis! My husband had to call 911 after finding me unresponsive! I could have so easily stroked out and or died! No one was able to access my veins after 10 + tries to even give me anything! The ended up shooting mess up my nose to get my blood pressure to a detectable level 220/146! They say you can’t die from withdrawals but I say you definitely CAN! I will never allow myself to be put into that position ever again! No med is worth THAT! I can’t tell you how much it scares me to think of anybody else having to go through what I did! Please what can I do to help this cause????

  7. Kathy Cooper at 11:04 am

    Thank You Terry Lewis,
    I my area we have a Catholic Hospital, which possible doe snot recognize pain. We also have some Low Income Clinics, where there is very little expectation of care. One of the Doctors at this Clinic State in a New Article that “Every case of New Pain was a Red Flag for substance abuse. She also Stated that Alternative methods, offer relief for Pain.” She never mentioned anything about people who might need pain treatment. I also know one of her patients had “Back Pain” for 2 years, before she was diagnosed with Kidney Cancer This woman was in her 70’s and not a likely “Addict.” The problem is this Clinic is closely connected to the Hospital.
    I have also noticed another problem, many Doctors have pulled out of treating any Medicare/Medicaid patients. They are not re-reimbursed enough through these programs, and it is getting worse. The few that were left to Prescribe, mostly stopped, because the State came up with CE requirement 2 Years ago. In each Article in the local papers, they don’t mention this Fact. I follow the Local News regarding this issue, in each case they don’t mention any facts, while preaching about Addiction. They have no real Treatment available for that either.
    It is getting scary, not just about pain either. II tried to get some of my Medical Records, and in most cases they were either incomplete. A surgical Report where they forgot to mention a Discectomy. I noticed that one of the thing they are doing in these Clinics and the VA, is not writing anything down. I suppose this is the way to avoid any liability or rush people through. I accompanied other for no pain issues to the Doctor, in these other cases, nothing was written down. Which meant that each time the went to the Doctor it was like the first time. Necessary referral were postponed in these cases. At this time we may not even have a Neurologist available in this town, it is 160 Miles round trip to see one.
    There is no Advocacy or really anything to help any patients. Regulatory Agencies seem to be run by people who are beholden to the Healthcare Industry. The People who run these assorted Health Care Non -Profits, State Agencies all have to many ties to the Industry, they often take well paying jobs in the Industry after overseeing them.
    There is a lot of poverty in this State, and corruption, while the Health Care Industry is the biggest employer in this State. I feel like a fool for thinking I could get better. I wondered why after seeing a Primary care Physician for five years, they tried to postpone a referral for Years. When I finally got the referral it took another Year for an appointment, then when I did get there, they were directed to the wrong part f my body. I had a lumbar laminectomy,Discectomy in 2001, and then a C-Spine Implant in 2008. I realized the PC Doctor had never acknowledged or wrote down the pain I was having at the C_spine Implant. I suppose it was because the Surgeon was in his System. I think they cannot mention anything negative about another Doctor.
    The thing is that I often talk to people in similar situations, and there appears to be a theme. It is as if there is no expectation of improvement for any of us. They certainly will provide care is it is Profitable, but at this level we have a limited Number of Neurosurgeons. What I am seeing is a pattern of Ignoring small healthcare issues until they are big expensive problems. I feel like an Idiot, for thinking there was any sense to any of this. I guess I ma lucky to be alive, many people I know are not.
    When I was first Injured I was turned away from the ER by a Doctor who was later arrested for Drug Possession. He accused me of being a drug addict, and even tried to provoke me. I was in a lot of pain and distress at the time. I paid thousand for Chiropractors who took my money and still did “Adjustments” while the disc was ruptured. It took years to get a diagnosis and my first surgery. The second with my neck took a Years too as a I could no longer work. I feel like I ma in a Kafkaesque nightmare.
    My Imaging clearly shows this, and my Issues, yet they won’t even look at it. The 2 Surgical consults I managed to get in 10 Years have not even looked at the whole spine. I no longer bother myself with any though of improvement. The last surgeon said the damage around the implant was not bad enough for surgery. They won’t even consider removing the scar tissue so I can use my arm. I know of other people who are dead now dealing with this kind of thing. I keep thinking the Sytem can’t go on like this. It is really scary, they have written off a whole generation. I meet young people who are in the Behavioral health System, on Anti Psychotics, which a lot of the Clinics and the VA are giving out for Pain and distress over Medical Conditions and I am scared. How did ti get this bad?

  8. DAve at 7:10 am

    The “new and improved” opioid policies make clear pain care is not and has not been about the individual in pain. It has been about politicians, medical organizations, insurers- the important folf that cause half the worlds problems. As Milton Friedman put it- if you put the government in charge of the Sahara Desert- there would be shortages of sand in 5 years. Government and the health care industry cant get pain care right because they think of their own needs first and foremost and justify their policies or treatment of people of pain as necessary or good. What the person in pain believes is necessary for their own good is considered officially as subjective unreliable suspect- of little value or veracity.
    So yes- we can give tips to people i pain to try and adjust to an undemocratic inhumane careless pain care system- or we can call for humanizing and democratizing pain care so that any individual will receive care that reflects their actual beliefs, values, culture, individuality etc.
    Another tragic part of our failed pain care system- is increasing costs and treatment burden to people in pain. I cannot advocate for people in pain having to conform to such. Such needs to be changed- the burden of care for people in pain needs to be lowered. Doctors, politicians, medical boards, deans of medical school- they dont have the burden of care people in pain do- theyre the ones making things harder and harder for people in pain. Its tragic and cruel-and maybe some day more people in pain will wake up to how cruel and uncaring their fuedal masters are and will take back pain care.

  9. Joe Accordino at 5:57 am

    Thank you. Dr. retired and no doctor willing to treat,including univ. hospital,clev. case western reserve and clev. clinic dr.Herbal remedies will be tried next.It is toture.

  10. Terri Lewis PhD at 5:18 am

    The current limitations in system accessibility leads to the prescribing and imbibing of prescriptions and OTC substances without achieving a true therapeutic benefit. It sets the patient up for problems associated with polypharmacy. Too often, this failure to benefit is blamed on the patient and their characteristics rather than a flawed theory of prescribing or inadequate processes. We should never confuse the ‘act of prescribing’ with the outcomes derived from ‘an effective working alliance.’

    This is the space where evidence based practice is vulnerable to systemic failure and the installation of error – both the patient and the clinician are harmed. Too often, harmed patients disappear from the data – due to withdrawal from treatment, to suicide, or to the street. This form of ‘substance abuse’ is really rooted in something I refer to as ‘systemic abuse disorder” or SAD. SAD is generally the root cause of ‘substance abuse’ that originates in ineffective treatment practices and system processes, leaving patients in crisis to tread water within broken systems of care. SAD harms clinicians and impairs effective practices. Working to the limits of a broken system forces out clinical decisions that address symptoms but not health problems. Working in a SAD system burns out clinicians.

    Wellness and prevention are difficult to achieve in a SAD system. Fraud, waste and abuse are endemic and tolerated. SAD is visible in patient records, reports and clinical outcomes; it is the topic of expressed frustration in practitioner offices and professional media; and it is a latent variable underlying the observable deficiencies within our systems of care. In the aggregate, SAD generates flawed data that biases public policy development.

    We really have to elevate this conversation – nothing will move forward without it.

  11. Holly Rose at 3:58 am

    Dr. Lewis,
    Thank you so much for this wealth of information. The reality of our government taking away the ability access reasonable and safe pain medicine and treatment is looming over each of our heads. Sounds to me like a class action suit is in order. Inhumane treatment of chronic pain patients will result in a catastrophe of immeasurable pain, suffering & deaths. More & more people I know are talking about suicide as their only option. This scares me.
    How do we go about stopping the pending laws & such things? This is not going to end well if we don’t.
    I personally (a chronic pain patient) feel as if our government has no business in our medical treatment. Doctor fear is real. So many physicians are withdrawing proper treatment to patients and leaving them to fend for themselves. How is either part of this right?
    It’s going to take a tidalwave of deaths to change anything, and even then it’s very possible that the true statistics will be jumbled and played with to look as if addiction was the root cause.
    So basically we are scewed.

    I’m willing to speak out against this abuse of power for financial gain. But will it do any good?

    Thank you again for the informative article.