Dawn Anderson’s Desperate Plea for Help

DAWN ANDERSON

DAWN ANDERSON

(Editor’s note: Red Lawhern recently wrote a column about Dawn Anderson, a 52-year Indiana woman who died this month after a long battle with chronic pain and illness. Dawn was a double amputee and diabetic. We may never know the precise cause of her death, but as Red points out, Dawn died in “needless agony” because her pain was poorly treated.      

Last September, Dawn wrote a letter to her longtime primary care provider and shared a copy of it with PNN. Her letter is essentially a plea for help. Dawn asked the primary care doctor to take over her pain management because she was no longer able to get opioid medication from Dr. Paul Madison, a pain specialist who ran afoul of the law and stopped practicing medicine.    

Dawn wanted the letter published and her family has agreed because they want her story to be heard.)

A Letter to My PCP From His Chronic Pain Patient

Dear Doctor, 

You and I have been together, side by side for many years. You have been my doctor. I have been your patient.  You have cared for me during my most vulnerable times. You know my most precious secrets regarding my physical and mental capacities.  I have shared openly and honestly from my heart. You have saved my life not once, not twice, but numerous times. 

The pain I have endured has been stressful, exhausting, depressing and life changing.  You had tried your best to control my pain. Thank you for your referral to pain management.  This has been my experience.

I was promised by numerous pain management physicians my pain would resolve and I would be walking upright.  I knew it was puffing as no doctor could make such a promise.  Each time seeing a new pain management specialist, I went through numerous non-opiate medications.  Lyrica, Elavil, Cymbalta, Neurontin -- the list goes on and on. They tried numerous alternative treatments. Physical Therapy, Occupational Therapy, Acupuncture, Acupressure, epidural injections, trigger point injections, caudal injections, radiofrequency nerve ablations. Not only did these cost lots of money, it took lots of my time and energy.  Most did not work.  Some gave relief that was short lived. 

Many of the doctors I had seen tried opiate medications.  I was on high dose Methadone when you referred me to the pain specialists. The Methadone made me so drowsy. It allowed me to sleep but it did not relieve the pain.  I was forced from pain doctor to pain doctor.  When one could not fulfill the promise of relieving the pain and having me walking upright, I was discharged from the service with a letter saying my condition was too complex and they would no longer see me. Or I would get the famous, “I don't know what else to do for you.”

Many of the opiates I was prescribed did not relieve the stabbing intractable pain I was experiencing.  One pain center refused to see me because I was discharged from one service and scheduled the appointment 28 days later.  I was accused of drug seeking.  I was in no way seeking drugs, I was seeking relief from the pain that kept me thinking I would be better off dead.

After the second amputation and surviving septic shock, I had no hope. I was so tired of the pain, the hospitalizations, the medications, the embarrassment of crawling around like a dog, the quality of life that I no longer had.  I couldn't even wipe my own butt.  But there was something about that granddaughter who was recently born that I needed to hold onto some type of hope things would get better.

Midwest Pain Management was my last hope.  I explained everything I had endured as far as pain treatments, the type of pain I was having and all the locations my pain was affecting.  I was slowly weaned off Methadone.  Again, I had to go through all those previous alternatives, previous medications, previous treatments.

The last trigger point injection I received caused an abscess about the size of a grapefruit.  I had to get the abscess drained, get placed on antibiotics and the doctor refused to do any further injections for fear of more infections and septic shock. The only option at this point was again, the opiate based medications. 

Now understand when you agree to go on opiate medication, you sign a pain contract. Basically limiting you to one doctor prescribing opiates, one pharmacy to obtain the opiate, monthly urine drug screens, and occasional pill counts which means the office can call you any time and you must go in with your pill bottle. 

Although many of the opiates caused drowsiness, they did not control the pain.  After almost two and a half years of trying different drugs at different doses, this pain doctor was able to find the right drug at the right dose that relieved my pain and not cause extreme drowsiness.  I was able to start doing things I did prior to both legs being amputated.  I was able to live on a daily basis without being so drowsy and unable to focus.  I began to have hope as I was able to care for my family, take care of the house, start paying the bills again, look forward to going on vacation. 

This was 8 years ago. I have remained on the same drug and the same dose for those 8 years.

You have seen me at my most desperate times. You have seen me when all I could do was focus on all the pain I was having.  And you can attest for the last 8 years, my pain has been under control and has not been a topic in our office visits until now.

You and I have always spoken with honesty and sincerity.  You have always called my pain doctor my drug dealer.  Although I have always smirked when you say it, it hurts my heart because I feel if it wasn't for this pain doctor who never gave up trying old treatments, new treatments, questionable treatments, I would have killed myself many years ago. 

The quality of life I had on high dose opiate medication relieved that excruciating stabbing pains in my back, stumps and hips.  I may not be walking upright but I was walking with minimal pain.  Until recently, you and your office did not even know I had a wheelchair.  How do you think I was able to do that?  I was able to do that because I was taking the pain medication my so-called drug dealer prescribed for me.  I never once abused them, misused them, diverted them, overdosed on them. 

Since the decrease and removal of the long acting medication, my quality of life has greatly diminished.  It is so painful to walk with the prosthetics. It hurts to bend, it hurts to stand. The pain has returned and again, all I can focus on. Being in constant pain is exhausting, depressing, and taking my will to live. 

You may see this as being addicted to the medication.  I see this as being addicted to the quality of life I had when my pain was under control. The life where I could put on my prosthetics, go shopping, go out in the yard and rake my leaves. The life where I enjoyed being around others without having constant pain to focus on.  That life where I loved to plan and go on cruises to the Caribbean. That life that no longer exists.

I feel like there is nowhere to turn, no one to help. I know there is a life where all this pain I am experiencing can be relieved with one medication. I am desperate to get that life back.

Sincerely,

Dawn Anderson

(Editor’s note: How did Dawn’s doctor respond? “I brought him the letter and have not received any communication from him. Just sad. He has been my doctor for decades,” Dawn wrote in an email last October. “I'll fight until I can't fight any longer. I have lost over 40 pounds and my muscles keep getting weaker.”

Dawn died on March 11, 2019. She is survived by her husband, two daughters and three granddaughters.)

Pain Patient’s Death Was ‘State-Sanctioned Torture’

By Richard “Red” Lawhern, Guest Columnist

Dawn Anderson was 53 years old and a former registered nurse. Her family has granted permission to share the story of her last days. Dawn’s story is both horrifying and highly representative of many people in pain. These are patients who – in effect, if not from deliberate intent – have died in entirely avoidable agony because of the CDC’s 2016 opioid prescribing guideline. 

Dawn was diabetic.  She also suffered from kidney disease.  She had lost both legs and one eye, resulting in severe pain for many years, which until recently was managed with opioid pain relievers.  Her pain management physician – Dr. Paul Madison -- is no longer practicing medicine. Madison was recently convicted of healthcare fraud and awaits sentencing for billing insurance companies $3.5 million for services he didn’t deliver. Madison reportedly had “pill mills” in 11 states, from which he dispensed very high volumes of opioids. 

When Dr. Madison was barred from further treating patients, Dawn sought help from multiple pain management doctors in her area.  She found that many were no longer accepting new patients.  Among the few who would see her, none would treat her with opioids at the dose levels that had been effective for her in the past. Several were transitioning their patients to addiction treatment with Suboxone or recommending steroid shots. 

DAWN ANDERSON

DAWN ANDERSON

Dawn’s most recent pain management doctor refused to prescribe above 90 morphine milligram equivalents (MME) per day, citing the CDC guideline as a de facto maximum allowable dose level.      

Like many patients with chronic pain, Dawn’s medical situation was complex and involved several interacting medical disorders and issues.  She had a history of MRSA – a highly aggressive antibiotic-resistant staph infection.  Dawn had also personally observed many patients in whom spinal injections had led to worsening pain.  She refused both Suboxone and the steroid shots

On March 4, 2019, a family friend spoke with Dawn.  She was very tired and not feeling well. Her husband was calling from work throughout the day.  When she did not answer, he called the police department and asked for a wellness check. When police arrived, they found Dawn had fallen out of her wheelchair and was unconscious on her living room floor. She was transported to a hospital.  When she regained consciousness, she was very confused.

Hospital physicians determined Dawn had a severe urinary tract infection and her kidneys were failing. She was admitted to ICU and a doctor ordered a dialysis tube. Staff also forcibly started her on Thorazine injections, as she was refusing dialysis.  They asserted that she was mentally incompetent.   Family members observed that she was covered in bruises due to the force used when pinning her down to administer the injections.

On March 10th, Dawn was moved from intensive care to a regular hospital room. Her daughter called a family friend so that Dawn could talk to someone she liked and trusted.  The conversation was very difficult.  The friend asked why Dawn was refusing dialysis.  Dawn replied, “I just can't take it anymore.”  She anticipated having new issues with the dialysis, but most important was her unbearable pain.  Hospital staff had again refused to provide adequate treatment with opioid pain relievers.  

Both Dawn and her friend were in tears, but Dawn was adamant: “Honey, I love you, but I can’t suffer any more. The pain is unbearable and I just can’t fight any more. If you keep begging me to, I will hang up.” 

Dawn’s friend and her family had talked with her about entering hospice care, where she would at least be treated for her pain.  She was released from the hospital that day to go home.  Her friend spoke with Dawn an hour later.  She was tired, but had at last been placed on comfort care.

Dawn died a day later, on March 11, 2019. 

What can we learn from this deeply disturbing narrative?  Would Dawn have lived longer if she had been treated adequately with opioid pain relievers?  That is impossible to say with confidence.  But what is clear is that this woman died in needless agony.  Dawn should never have been forced to see a pill mill doctor in the first place. And she should never have been forced to taper from effective dose levels because legitimate doctors were intimidated by CDC and state regulators into refusing effective — and largely safe — opioid therapy. 

By any other name, this was state-sanctioned torture.  

It is not accidental that the American Medical Association recently repudiated the CDC guideline.  But the government dinosaur’s bureaucratic brain is in its tail and it hasn’t gotten the message yet. CDC has merely doubled down on the mythology that doctor over-prescribing caused our “opioid crisis.” They are running away from their own overdose data, which demonstrates the falsity of their assertion.

There is very little relationship between physician prescribing and either opioid addiction or overdose deaths. But the only metric CDC seems willing to use to measure the success of the war against drugs is reduced prescribing to Dawn Anderson and other people in pain.

It is time for this madness to stop!  Opioid prescribing guidelines need to be taken away from the CDC and rewritten from the ground up by more competent agencies or by professional groups within medicine itself.  And this time, multiple patient advocates need to be voting members of the writers’ group.

Lawhern.jpg

Richard “Red” Lawhern, PhD, has for over 20 years volunteered as a patient advocate in online pain communities and a subject matter expert on public policy for medical opioids.  Red is co-founder and Director of Research for The Alliance for the Treatment of Intractable Pain.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.