Boston's stories of justice, hope and resilience

The Scope

Boston's stories of justice, hope and resilience

The Scope

Boston's stories of justice, hope and resilience

The Scope

Patients with substance abuse histories suffer pain and misdiagnosis

Christine Gardner has lived on Cape Cod her entire life. She used to love walking on the sand, but she will never do that again. Or cook a meal for herself. Or teach her two sons how to drive.  

“The simplest things I can’t do. I have to have help all the time. I went from being a completely self-sufficient and very independent person to having everything taken away from me and having to sit still in a nursing home for 15 months,” said Gardner, 53. 

According to her court case records, filed in Dedham’s Norfolk County Superior Court, Gardner was taking Suboxone at the time of her admission for long-term alcohol addiction to Bournewood Rehabilitation Center in Brookline in May 2014, although Gardner denies this.

Gardner complained at Bournewood for two days about chronic pain — a stabbing pain in her neck, frequent headaches, arms and legs that were both numb and searing, full-body spasms. On the third day, she couldn’t even put a finger to her nose or stand on her own.

No one believed her at rehab because they thought she wanted drugs, according to court documents. But in reality, Gardner was suffering from a raging infection and sustained a compressed spinal cord, leaving her paralyzed from the neck down. Today, the Falmouth resident uses a wheelchair. She will never walk on her own again.  

Gardner’s story of disbelief and misunderstanding is repeated all over the state and country, where users or former users are labeled “drug-seekers” and dismissed by medical professionals as opportunists who aren’t telling the truth. The result can be devastating, from minor misdiagnoses to paralysis and death.

Although lawsuits like Gardner’s are scarce, advocates and researchers are taking note and trying to bring awareness to the problem.

“We try our best to be bias-free. We are human beings. There is always a possibility of an implicit bias that providers have towards their patients,” said Scott Weiner, M.D., director of the Division of Health Policy and Public Health in Emergency Medicine at Brigham Health and associate professor at Harvard Medical School. “It is incorrect. It shouldn’t happen like that.”

While he is not connected to Gardner’s case, he has seen this reaction from medical professionals before and blames it, in part, on doctors fearing accusations that they create addicted patients.

In the late 1990s and early 2000s, physicians’ protocol was to use opioids to address pain. “We had guidelines saying to use opioids,” said Weiner, who is currently studying how to improve the care of patients in the emergency room who present with both substance use disorder and pain. 

Attitudes started to change over a decade later when doctors realized opioid prescriptions were increasing patients’ risk of addiction and overdose. According to the National Conference of State Legislatures, rules restricting the prescription of opioids first emerged in 2016 when Massachusetts passed the first law in the United States setting a supply limit of seven days on first-time opioid prescriptions. By the end of that year, seven more states had passed laws restricting opioid prescriptions. Since October 2018, 33 states have done the same. Most of the statutes include limiting first-time opioid prescriptions to a short supply with dosage restrictions known as morphine milligram equivalents. 

But those policies don’t help those with a history of substance abuse who seek medical care for unrelated conditions.

In 2004, two years after she left the military, Jennifer Morand was 28 years old and addicted to opioids. By 2011, she was using methadone to control her addiction and to treat chronic pain.  She was also pregnant.

Methadone had helped Morand stay clean from opioids since 2009, but physicians at The Women’s Hospital of Texas refused to give her pain medication after her cesarean section on March 23, 2011, and treatment providers dropped her methadone dose by 20 milligrams.

Morand, now 42, experienced severe pain and was put into intensive care. She didn’t receive pain medication until three days later.

“I feel like I experience it all the time in the medical community. And I understand that they are nervous, but to me, you have to take care of your patients. If somebody has just had surgery, they’re going to need pain medicine,” Morand said. 

The Women’s Hospital of Texas could not be reached for comment after multiple attempts. 

https://thescopeboston.org/features/recovering-from-opioid-addiction-with-limited-treatment-options/

Richard Lawhern, director of research for the Alliance for the Treatment of Intractable Pain, said doctors are forced to make a choice between possibly being punished by state medical boards, or intentionally reducing the opioids dosage to below the minimum level required to address a patient’s pain. ATIP is an organization of pain patient advocates fighting for the withdrawal of Centers for Disease Control and Prevention guidelines concerning opioid prescriptions for chronic pain patients.

“I am not a medical doctor, but I will tell you the forced tapering of any patient that is presently stable, and that has benefitted from the use of opioids for the control of pain, is medical malpractice and patient abuse. Hands down. No argument,” Lawhern said. 

The CDC guidelines not only led physicians to reduce opioid prescriptions. It caused them, some say, to discriminate against patients with a history of substance use and deny care.

“They drilled into doctors’ heads so bad that they’ve done something they can’t walk back now,” said Lana Kirby, whose niece, Denise Burchfield, went to the St. Francis Hospital in Indianapolis in 2017 with signs of a blood clot in her leg, the same reason she lost her first leg four years prior. Her file was flagged immediately for a history of substance abuse and she was turned away. 

Franciscan Health, the alliance associated with St. Francis Hospital, wrote in an email response to Kirby’s charge that the hospital doesn’t have a protocol to refuse patients opioids if they have a history of substance abuse. “All decisions of this nature are made on a case-by-case basis.” 

“She was scared to death. This was her last leg that she had. She was put out in the wheelchair in front of the hospital and told to go to a drug rehabilitation center,” said Kirby. At the rehabilitation center, Valle Vista in Greenwood, Illinois, Kirby’s niece’s pain was so excruciating that she fell out of her wheelchair onto the floor, screaming to be taken to the emergency room. “They waited hours and hours. They told her to stop screaming and wouldn’t give her anything for pain.” 

Finally, they transported her to Community South Hospital in Greenwood, Illinois, but once again, she was given an antipsychotic and left outside in a wheelchair with no transportation. Doctors did not find the blood clot and Burchfield ended up losing her second leg. 

Valle Vista and Community South Hospital could not be reached for comment. 

“It was then and always will be my opinion that if they had taken her seriously they would have found it, and there are treatments for that,” Kirby said. “Discrimination due to the prior drug use had everything to do with her losing her second leg. The bottom line is if I had gone in there with the same symptoms, they would have kept me until they figured something out.” 

Gardner’s story follows a similar narrative. Her lawsuit records show that throughout her days at Bournewood, Gardner voiced concern over her prior neck surgery and her demand to go to the emergency room was denied. She needed assistance to sit up in bed and walk to the bathroom. Nevertheless, no physical or neurological assessments were documented to assess Gardner’s change in behavior and function.  

“I’ve never been treated that way and made to feel as though I am nothing. For days I was telling them that I needed help,” said Gardner. “You don’t word things like that. You don’t say someone is a liar. For five days I asked to go to the hospital and they dismissed me every time.” 

When Gardner finally went to the emergency room one of the paramedics asked why she hadn’t called sooner.

“People need to know that people are being treated like garbage, like the dregs of society. You go through enough mentally trying to deal with addiction, then you get treated with disrespect,” said Gardner. 

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Mark Ilgen, a clinical psychologist and associate professor of psychology at the University of Michigan, said the stigma associated with mental health can negatively influence the way physicians interact with their patients, especially those with substance abuse problems. Ilgen said physicians are in a challenging position to determine what pieces of information to focus on for treatment, even if there is a history of drug use. “It is still important to hear patients’ complaints, especially if they are repeatedly asking for help. You need to listen to and respond appropriately,” said Ilgen. 

Weiner said there are warning signs to indicate if patients are seeking medication for any reason other than legitimate medical help. A common red flag is a patient moving from hospital to hospital trying to obtain prescriptions. Weiner explained there are prescription drug monitoring systems to help prevent this. If a patient fills a prescription for an opioid, the pharmacy has to report it to the state and in return providers have access to the database. Many emergency departments in Massachusetts have another database that tells providers if a patient has had multiple visits to multiple hospitals.

 “If I do see a patient going from hospital to hospital with the same complaint, it’s more suspicious,” said Weiner. He added that patients who are seeking medication are more likely to have several prescriptions, request medication by name and report experiencing more pain than perceived by medical professionals during physical examination. “The problem is none of those are perfect. It’s not a lie detector test,” said Weiner.

In Gardner’s case, her care providers made the incorrect assumption that her signs and symptoms were associated with substance abuse, which led to her delay in diagnosis and treatment. Gardner said the providers made it sound like she dropped the medications and tried to hide them in her lap. “I couldn’t move from the neck down. It took three people to hold me up just to try to sit me up to give me my meds when they should’ve put them in my mouth knowing. Even then, they didn’t believe me.” 

The disbelief and mistrust from medical professionals Gardner faced is echoed in Kimberly Harteis’ experience. In November 2017, Harteis was an active heroin user when she was admitted to Legacy Hospital in Vancouver, Washington, with an infection in her neck. She was told she needed immediate surgery to prevent paralysis or death but claims two doctors told her they wouldn’t work on someone who was a known addict. 

“By then, I couldn’t even open a straw,” said Harteis, 47. “One nurse had to hold my head at the top of the bed and somebody had to hold my feet while my husband had a rag and gave me a sponge bath. I couldn’t even describe to you the pain of having an infection eat through you like that … They just treat us like we are monsters,” she said. Legacy Hospital could not be reached for comment after multiple attempts.

Harteis and others like her represent a subset of patients who are largely voiceless in their pursuit of treatment and recourse after being denied it. One reason it takes years for these cases to surface is because it is difficult to find a lawyer willing to help someone with a history of substance abuse, said Nancy Lee Watson, the lawyer of Dr. Claudio Demb, a physician in Gardner’s case. For this reason, Harteis never filed a complaint — nor have Burchfield, Kirby or Morand.

Even if they do manage to find legal representation, “you have to do all the legwork yourself. It’s hard to do when you’re going through all this traumatic stuff,” Harteis said. “You end up just feeling and looking crazy. This is why they walk away, and these doctors get away with it.”

Florence A. Carey, Gardner’s attorney, said things are changing, and that these types of cases are becoming more common, which is having an effect on the court system.“It affects our jury selection. We have to consider that now,” she said. 

Demb and two other physicians in Gardner’s case, Dr. William Burch and Dr. Mark Brudniak, could not be reached for comment after multiple attempts. Brudiniak’s lawyer declined to comment and, at time of publication, Burch’s lawyer could not be contacted. 

Ilgen is optimistic that physicians will eventually be more concerned with understanding the full experience of a patient who seeks substance use treatment and tailoring treatment to their individual symptoms. 

But Gardner says there’s no time to waste. 

“I want to make sure this doesn’t happen to anyone else. This needs to be stopped. The addicts stay addicted because they don’t get the treatment from the medical community that they deserve.” said Gardner. “They deserve to be treated like a human being. And we are not.” 

 

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