Families haunted by opioid deaths seek answers, change

Answers might soon come regarding the mysterious death of Casey Jo Schulte in a Fargo apartment garage last August — whether she accidentally overdosed on painkillers, died by suicide, or was killed — but her family already knows a culprit that put her in harm's way.

An addiction to powerful opioid painkillers that she needed at first for digestive pain — but later just needed — hijacked the promise of a 26-year-old champion swimmer and dancer whose life goal was to study nursing or radiology and care for others.

"Ultimately she is the victim of opiate overprescribing," said her mother, Shelly Elkington, of Montevideo, Minn., "and that is what brought her into a world that she had no business being in, with criminals who had violent backgrounds."

Young adults such as Schulte are now dying at a rate not seen since the late 1990s at the crest of the AIDS epidemic, and the misuse of prescription opioids such as oxycodone and hydrocodone is largely to blame along with the related use of illicit heroin. Overdose deaths from legal and illegal opioids spiked in Minnesota from 54 in 2000 to 317 in 2014. For adults ages 25 to 34, deaths shot from 11 to 73 in that same period.

Schulte may never show up in these statistics — depending on how authorities classify her death — but her story shows the impact of opioids beyond the basic numbers.

"We cannot ignore this problem," said Lexi Reed Holtum, executive director of the Steve Rummler Hope Foundation, a local advocacy group named after a 43-year-old who died from opioid exposure.

Elkington has redirected her sorrow — contacting state lawmakers, advocating for local police to carry opioid antidotes, and supporting rules proposed by the U.S. Centers for Disease Control and Prevention to curb opioid use. And yet as she looks forward, Elkington — a nurse who runs a home care agency — looks back with confusion at how her daughter fell apart.

Schulte graduated from Montevideo High School in 2007 with the wonder of a self-described "prairie girl" who dug up an ancient fossil while kayaking in the Yellow River, but also the anxiousness of a teen who painted her nails over and over and over until they were right. She was a high achiever — the only swimmer from Montevideo in years to reach an individual final at the state high school swim meet.

But health problems emerged shortly after she departed for North Dakota State University, and she was diagnosed with a painful digestive condition known as Crohn's disease. She survived freshman year and returned home to work as a phlebotomist — a hospital professional who draws blood — before trying to resume a nursing education in Alexandria.

Painful complications and malnourishment emerged, and Schulte received her first opioids for pain relief. They worked, her mother said, "She probably had relief for the first time in a long time."

Trouble is, the pain relief might have masked emerging problems, Elkington said, and in 2012 her daughter needed surgery at Abbott Northwestern Hospital in Minneapolis to remove a diseased section of her small intestine.

Complications brought more pain, resulting in more opioids and hospital trips.

A first sign of trouble at the hospital, Elkington said, was the way her daughter clutched her bag of pain pills as she slept.

"She was obsessing more and more," she said. "She would make the nurses write down exactly when she got her last dose and if they were late, she would be angry."

It's a familiar downward spiral as patients grow tolerant to opioids and demand more, said Dr. Matthew Monsein, an Allina Health pain specialist who treated Schulte at Abbott. "It becomes really hard to know if their pain is worse from their injuries or issues or conditions, or whether that is related to the fact that a lot of them have become dependent on opioids."

During one of Schulte's trips to Abbott, Monsein pulled a chair next to her bedside. Elkington could see worry in his eyes. The doctor encouraged her to enroll in the Phoenix Center at Abbott, which addresses opioid dependency.

Schulte opted to return home and work with her regular doctor.

Opioids manage pain following injuries and surgeries, but never have been proven to treat non-cancer forms of long-term chronic pain, said Dr. Chris Johnson, an ER physician at Methodist Hospital in St. Louis Park and a leading advocate for reduced opioid prescribing. But many of the 200 million prescriptions in the U.S. per year are used for that purpose, he added, and the drugs' addiction risks only increase with time and exposure.

"If it's going more than a couple weeks," he said, "we're really getting into a dangerous area."

Schulte's dosage was reduced back home, gradually. Only then she started making monthly trips in 2014 to the emergency room, reporting pain, and her mother suspects it allowed her to supplement her regular dosage with more pain pills.

In summer 2015, Schulte confided to her brother that she had started using heroin as well. Elkington confronted her daughter, who replied through tears, "It's not my fault, momma."

Schulte agreed to go to the Phoenix Center to wean herself off opioids — starting Aug. 20.

The way legal opioids and illegal heroin work in the brain is remarkably similar, Johnson said. Estimates vary on how many heroin addicts started on pain pills, but the illegal drug is often cheaper and available when doctors curtail their prescriptions.

"The [drug] cartels should be thanking the medical profession for giving them this huge new market and increasing the demand for their product," Johnson said.

Reforms in Minnesota include a 2014 law that allows police officers to carry opioid antidotes, and give immunity to people reporting overdoses. But that didn't affect the pace of prescriptions in the state. Now state leaders are increasing oversight of doctors with excessive prescribing habits, and the CDC has proposed reforms to standardize opioid prescribing and evaluate pain patients for addiction risks.

Schulte was living in Fargo in 2015 and working as a clerk at a convenience store. Her mother was worried. Old friends had drifted as they took jobs, got married and started families. New friends had shady, criminal backgrounds with drug connections, and they drifted with her from town to town. Elkington rarely knew where her daughter was.

Still, she had hope. Aug. 20 was days away. Elkington put $75 in her daughter's bank account — gas money for the trip from Fargo.

Schulte was found dead on Aug. 19, lying on a work bench in the back of her apartment garage. Police had stopped one of her friends, who was driving Schulte's car at 110 miles per hour in Alexandria, and he told them where to find her.

Questions remain about the man's story, and whether he was involved in her death. The Fargo Police Department and the Cass County Coroner's Office did not return calls for comment.

Elkington longs for answers and change. The night before Christmas Eve, she sat at a keyboard at home — a picture and mementos of her daughter nearby.

Elkington tapped out her feelings, then submitted them to the CDC as part of the public comment record for its proposed regulations.

"Please fight for those who not only die from this mass epidemic, but for those who are currently living it," Elkington wrote. "Casey Jo never feared dying from her medications, she feared not having them. Reform will come too late for Casey Jo. Which makes me so very sad, but please help others with these guidelines. Please."

Jeremy Olson • 612-673-7744