Patients in Addiction Treatment Often Stigmatized by Doctors

By Pat Anson, PNN Editor

Most chronic pain patients are well aware of the stigma associated with using opioids. A recent PNN survey of over 3,600 pain sufferers found that about a third had been abandoned by a doctor (29%) and many were unable to find a new physician to treat their pain (36%).

“I was abandoned by the doctor who did my last operation,” a veteran with CRPS told us. “I should have been put on whatever pain medication possible to ease my pain. I wasn't. I'm not a drug addict and I damn sure don't appreciate being treated like one!”

“The stigma and refusing to treat needs to be addressed. Stigma by pharmacists, doctors and society is cutting life short. Patients have become social pariahs. Severe surgeries are conducted and patient is sent home with Aleve. It’s barbaric, cruel and inhumane,” another patient said.

The stigma also extends to people being treated for opioid use disorder (OUD), according to a new study of patients in the Canadian province of Ontario. Researchers at St. Michael's Hospital in Toronto analyzed the health records of nearly 155,000 patients who were discharged by a primary care physician between 2016 and 2017.

The research findings, recently published in PLOS Medicine, found that patients prescribed an addiction treatment drug such as Suboxone or methadone were 45% less likely to find another primary care provider (PCP) in the next year compared to other patients.

"There are considerable barriers to accessing primary care among people who use opioids, and this is most apparent among people who are being treated for an opioid use disorder. This highlights how financial disincentives within the healthcare system, and stigma and discrimination against people who use drugs introduce barriers to high quality care," said lead author Tara Gomes, PhD, a researcher at St. Michael’s Li Ka Shing Knowledge Institute.

"Ongoing efforts are needed to address stigma and discrimination faced by people who use opioids within the health care system, and to facilitate access to high quality, consistent primary care services for chronic pain patients and those with OUD.”

Surprisingly, Gomes and her colleagues found that pain patients on long-term opioid therapy in Ontario did not have a harder time finding a new PCP. That finding is at odds with a recent study in the United States, which found that nearly half of primary care practices would not accept new patients who were already taking opioids.

Researchers think the discrepancy may be due to the U.S. having a private healthcare system, where there is a financial incentive to drop patients with complex health needs, as opposed Canada’s publicly funded healthcare system.

During the gap in their primary care coverage, about 5% of Ontario patients on long-term opioids visited an emergency room, suggesting that the loss of a PCP led to further health problems that made them seek care in a hospital. In effect, patient abandonment not only made those people sicker, it shifted the financial burden of their healthcare to someone else.

“Although the structure of primary care differs across North America, our findings suggest that even in a province with a publicly funded healthcare system that has undergone considerable primary care transformation, barriers to care continue to exist for people who use opioids, particularly those with an OUD,” Gomes wrote.

The researchers said insurance reimbursement policies should be reviewed to ensure that they do not lead to the discrimination and stigmatization of patients. Doctors should also be educated on how abandoning or discharging patients can be harmful.

Patient abandonment may have grown worse since Canada adopted a new opioid prescribing guideline in 2017. A 2019 survey of patients by the Chronic Pain Association of Canada found that about a third of patients had either been abandoned by a doctor or their doctor refused to continue prescribing opioids to them.

My Pain Doctor Abandoned Me, But I'm Not Going Away Quietly

By CindyLee Calaluca, Guest Columnist

Recently I was terminated by my pain management physician without notice and with no plan for continued care. Why? I complained to the physician that I did not appreciate getting no call back when I repeatedly contacted his practice — over an 8-day period — to report that my chronic pain now had a severe acute component to it.

The acute problem is caused by a severe deep vein thrombosis, extending from the groin to the toes in my left leg – the result of a surgical wound from a toe amputation tearing open from severe swelling. Additionally, an old pressure ulcer had abscessed. The acute pain I am experiencing is because of an overlap with my poorly controlled chronic pain, thanks to the CDC guideline for prescribing opioid medication.

All I can do now, because of the pain, is lay in bed and force myself to sleep to cope with the pain. I am totally incapacitated and unable to do daily activities independently. I am 70 years old, a widow, and my only living relative is a 69-year-old brother who lives 2,000 miles from me.

The physician responded to me inappropriately. He told me he gets 3,000 phone calls a day and saw no reason to respond me, because there was nothing he was going to do about my pain. Furthermore, he had an arrogant demeanor and feels he isn't required to call me. I get an appointment once a month with him and that's where his responsibility for my care ends, he said.

Naturally, that opened the door wide open to abandonment and neglect of a patient. His practice has no after-hour or weekend coverage beyond an answering service.

Before he walked out on me, he insulted my career experience, called me uneducated, and said I didn't know what I was talking about regarding health care or laws.

It is a shame that in his superiority complex, he forgot, if he ever knew, my career or educational background. You see, I am an adult and geriatric nurse practitioner who holds a doctorate in nursing practice with 55 years of clinical experience, along with 20 years of simultaneous healthcare administration. That physician is about to find out how "uneducated, stupid and wrong" I actually am.

That's the story behind my being abandoned and put in my place for complaining. I tried to be nice and have an adult conversation with this man. What a shame his child showed up!

I completely understand the problems created when patients arbitrarily lose their providers without adequate and proper notice. I live in a community of less than 500 people. The nearest pain management practice that uses oral medication is 45 miles away. The next one is two and a half hours away. Then there's University of Alabama Medical Center, which is six hours away. Right, I'll just pop into the pain center tomorrow. Like that's happening.

I have had it with all the buck passing by politicians, law enforcement agents, and the CDC making doctors too afraid to practice pain management correctly. Putting a sign in the lobby stating that under no circumstance does the practice treat pain is not correct medical intervention. In fact, since pain is a symptom of illness and that the body is imperiled, it is turning a blind eye to abandonment.

I am no longer going to be a good patient and not respect myself. I refuse to play the game anymore. Since I am dying, I am not going quietly into the night. I am going to advocate and do so loudly, visibly and boldly. I will advocate for patients one last time.

CindyLee Calaluca lives in Alabama. Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

Opioid Hysteria Leading to Patient Abandonment

By Pat Anson, Editor

As the overdose crisis has worsened, doctors are under increasing pressure from law enforcement, regulators and insurers to reduce or stop prescribing opioids.

A nurse practitioner in the Seattle area – who asked to remain anonymous -- recently told us that she was closing her pain clinic because she was afraid of losing her license and going to prison. 

“This whole thing is making me literally sick to my stomach. I've cried a million tears for my patients already, and I'm just beginning,” she wrote.

“I will be carefully weaning them all down… or arranging transfer of care to anywhere the patient would like. What a joke that is. There is no one else prescribing effective doses of opioids for chronic pain patients.  If I am to be thrown in prison, it should be for that -- not for keeping them on therapy that enriches their lives."

Patient abandonment is a growing problem in the pain community. Patients safely prescribed opioids for years are being dropped by doctors – often without weaning or tapering -- after they fail a drug test, miss a pill count, or become disruptive during an appointment. Sometimes they’re dropped for no reason at all.

Such is the case of Chris Armstrong, a 50-year old Orlando, Florida man severely disabled by multiple sclerosis and trigeminal neuralgia, a chronic pain facial disorder sometimes called the “suicide disease.” For over six years, Armstrong’s pain was treated with relatively high doses of morphine and hydrocodone at Prospira’s National Pain Institute in Winter Park.

That came to abrupt ending in late December, when Armstrong’s 74-year old mother and caretaker was handed a brief letter during their last visit to the clinic.

"This letter is to inform you that I will no longer be your physician and will stop providing medical care to you,” wrote Cherian Sajan, MD. “I will continue to provide routine emergency and medical care to you over the next 30 days while you seek another physician.”  

No explanation was given for Armstrong’s dismissal. Dr. Sajan did not respond to a request for comment.

“To have the plug pulled just like that,“ says Chris. “There’s nothing in my record that I’ve ever done anything wrong. I was a model patient.”

“They discharged him and gave no reason,” Valerie Armstrong said.  “They gave us a name of another pain doctor which they scribbled on a piece of torn paper. We went to see him, but after a few visits, (that doctor) told my son he was discharging him as well, as he needs ‘long term care’ which they refuse to provide.”

At the National Pain Institute, Armstrong says he was prescribed 150 morphine equivalent units (MME) of opioid medication daily. The second doctor reduced that dose to 100 MME – still above the maximum dose of 90 MME recommended by the CDC.  

Chris has been unable to find a new doctor and believes he’s been red flagged as a patient who needs high doses of opioids. 

“I went to another one and he said he can’t do anything because his hands are tied because I’ve been ousted by another pain doctor,” he told PNN. “What am I going to do, if no one will see me because of that?”

CHRIS ARMSTRONG

“I have called every pain clinic in my area and no one will see my son because he has been discharged by the previous pain clinics,” says Valerie. “My son is bed-bound quadriplegic, only travels in a wheelchair and can barely talk or eat from trigeminal neuralgia pain. His health is extremely fragile, and he will surely die if he has to stop his pain medication abruptly. That happened once before and he went to the ER in an ambulance having seizures.”

Armstrong has only a few days left of his last prescriptions.

“We need help and we need it now. He only has a few days supply of his pills left and then I'm sure his body will give out from withdrawals,” says Valerie. “My son had never taken any kind of pain medication before going to the National Pain Institute six and a half years ago and now he is physically dependent on them. I have begged and pleaded with them to take him back and even called their corporate headquarters to no avail.”

There is often little recourse for patients like Chris Armstrong.  Malpractice and patient abandonment laws vary from state to state, but discharging a patient is generally considered legal, as long as it isn’t discriminatory.

Florida’s Board of Medicine says a “health care practitioner can terminate a patient relationship at any time, but the practitioner may not abandon a patient” and should provide “continuity of care” until a patient can find a new doctor. To fulfill that requirement, the Florida Medical Association recommends that patients be given adequate notice in writing, be provided with medical care for at least 30 days, and be offered assistance in locating another practitioner – which Armstrong’s previous doctors did.

“There not a lot of strength in the law here,” says Diane Hoffman, a professor of health law at the University of Maryland Carey School of Law. “That makes it very challenging for chronic pain patients. And for physicians, they are trying to find the right place to be. Physicians are very risk averse in terms of the law.”

If patients have a complaint about a doctor, Hoffman says they should contact their state medical board or their state’s consumer protection office.

If you have an experience with patient abandonment that you’d be willing to share, Hoffmann is collecting patient experiences on the issue. You can send your story to her at:  patientstories@law.umaryland.edu