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GUIDELINES FOR PAIN WARRIORS

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Reprinted with the kind permission
of Celeste Cooper

Dear concerned fellow person living with chronic pain,

It is rewarding to help others through our books, but I understand coping strategies alone are often not enough. Opioids allow many of us to participate in things we otherwise couldn’t, and in many instances, they are the safest option with the right precautions. I advocate for moving complementary therapies into mainstream, but these days the bulk of my time is donated to the day-to-day crisis created by limited patient access, if any, to their opioids.

Because of the volume of requests for help and the need to meet the demands for my own care, I investigated information to help you with your personal situation.

It’s important to understand what is happening. Physicians are caught in a quagmire of discontent. They are put in harm’s way by the DEA and other government agencies if they do prescribe opioids, and yet they run the risk of losing their license if they don’t treat their patient’s pain and it leads to patient harm. For instance, when a patient is fired, the physician has an ethical obligation to ensure the patient’s care is uninterrupted or be subject to repercussions from patient abandonment. If a patient is harmed because of abandonment, there may be grounds for a lawsuit. However, when the physician makes a choice, or in some cases is ordered by the DEA to withhold opioids from their patients, the rules change. The very people who impose their edicts on physicians, the DEA, the CDC, or other government agencies have no liability for their actions. Many times the physician is unjustly held accountable. There in the swamp water lies.

We have the ability to hold the right people accountable by providing factual evidence. Evidence includes things, such as:

  • A written letter from your physician stating his/her reasons for stopping your pain care. (If you don’t have one, demand it.)
  • Chronological documentation that your physician failed to provide notice and ample time to find another provider. (The treating physician is obligated to continue care for a reasonable amount of time.) This begs the questions, “Is your physician negligent if no one is willing to continue your care?” Is your provider fearful to bridge the gap because of the CDC Opioid Prescribing Guidelines or threats by their governing bodies?” When the standard of care is breached (i.e. abandonment, negligence, or malpractice) and their actions result in patient harm, there are grounds for legal action. However, the standard of care is changing due to government involvement and patient contracts (many also open to litigation for abandonment). The laws to protect both the physician and patient become very gray in today’s stormy climate.
  • Physician documents regarding withdrawal of care because they believe the patient is abusing their medications. They must have evidence as to why they came to that conclusion (see Pain vs. Addiction Behaviors).
  • Failure to provide information such as copies of relevant medical records, treatment notes, tests, etc. to a doctor who has agreed to take over your care.
  • Voice recordings or notes in your medical record that the DEA or other government agency created a burden on the physician’s ability to treat their patient’s pain.
  • Documentation of refused emergency care, such as treatment or appropriate hospital admission for withdrawal symptoms, suicidal ideation, or any other untoward effect. (This is not the same as expecting an ER to continue your outpatient opioid care.) Negligent harm must be proved in any case.
  • Your loved one has committed suicide and has documented it was due lack of access to their usual opioid treatment or proper pain care.
  • As a patient, you also have a duty. If you are unreasonably demanding, non-compliant (i.e. abusing, diverting, or misusing opioids), or threatening to the physician or staff, you are not protected.

If you have evidence of harm as a result of patient abandonment or changes in your pain care, you may be protected by Senate Bill S.483, Ensuring Patient Access and Effective Drug Enforcement Act of 2016, which was signed into law in April 2016.

Harm constitutes:

  • pain and suffering
  • cost of additional treatment
  • loss of earning capacity, and
  • loss of the ability to enjoy life

Once you feel you have sufficient evidence, please submit it to the attorney general for your state, which you can find at  NAAG | Who’s My AG?   If anyone is providing evidence on someone else’s behalf, make that disclosure and provide contact information.

Remember, if it wasn’t documented, in didn’t happen. Gather your arsenal and become empowered. Record what you can, when you can. The attorney general needs concrete evidence to move forward. You can find additional contacts at the bottom of the Sample Advocacy Letter. It may prove helpful to copy them in your letter to your attorney general and mention the pain care laws for your state.

You can find your state’s pain care laws at the American Academy of Pain Management or by typing “your state’s name state law on pain care” in your browser search engine and select from the results.

Because every case is different, each of us must demand our rights to be treated with dignity and respect. There is opportunity in adversity. Rome wasn’t built in a day, nor will our cries for help be solved quickly, but we must have hope. And, despite what many think, those in chronic pain are tough. We overcome hurdles on a regular basis.

I recommend joining an advocacy group to help you stay abreast of recent newsworthy information and/or fight for our rights in Washington.

US Pain Foundation
The National Fibromyalgia & Chronic Pain Association
The Pain Action Alliance to Implement a National Strategy

I wish you well in your pursuit to maintain a forward life coping with and managing chronic pain. We are in this together.

In healing and hope, Celeste

*The information here is not to be substituted for legal advice from a qualified attorney.


Celeste Cooper, RN, is a frequent contributor to ProHealth.  She is an advocate, writer and published author, and a person living with chronic pain. Celeste is lead author of Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain and Broken Body, Wounded Spirit, and Balancing the See Saw of Chronic Pain (a four book series). She spends her time enjoying her family and the rewards she receives from interacting with nature through her writing and photography. You can learn more about Celeste’s writing, advocacy work, helpful tips, and social network connections at CelesteCooper.com.

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