Amanda Latronica says her mom died of a “soft suicide.”
She didn’t put a gun to her head and pull the trigger â€” but the result was the same.
Earlier this year, Dawn Anderson, Latronica’s mother, went into kidney failure. It was another in a string of health problems that had left Anderson, a 53-year-old former nurse from Portage, severely disabled.
She had two amputated legs and was missing an eye, both complications from Type 1 diabetes.
And she was in extreme pain, she said, because of the opioid crisis.
Anderson was the face of a July 2018 Times story about the plight of chronic pain patients who feel they’re the inadvertent victims of that epidemic. Amid a rash of opioid overdose deaths â€” caused in part by physicians liberally prescribing the drugs â€” the U.S. Centers for Disease Control and Prevention in 2016 issued guidelines recommending that doctors not prescribe large doses of opioids, or prescribe them long term, to patients who weren’t at the end of life or undergoing cancer care.
That, along with the Drug Enforcement Administration going after doctors for overprescribing painkillers, left many physicians fearful of dispensing pain meds.
“The safest thing is to err on the side of safety and be overly strict in prescribing,” said Dr. Shaun Kondamuri, a Munster pain management specialist. “So legitimate pain patients are suffering. They may not get medications. They may not get enough medications.”
He said pain medicine prescribing went from one extreme to another, from doctors handing out painkillers like candy to not giving them to people who actually needed them. Many primary care doctors now refer pain patients to specialists because they don’t want to deal with them.
But last month, the CDCÂ published a report saying that doctors were misinterpreting the guidelines. It clarified that the recommendations did not advocate for abruptly tapering or cutting off patients from pain meds, particularly for people already on high dosages.
The original suggestions said physicians should not increase patients to 90 or more milligrams of morphine, or its equivalent, per day. But many doctors incorrectly thought that meant not having any patients on that high a dose.
That was the case for Anderson. She had been on 90 milligrams of morphine, but her doctor reduced her dosage and gave her a shorter-acting form of the medication. That, she said, left her unable to go up and down stairs, to drive, to garden, to function much at all. She tried pain injections, CBD, kratom â€” but nothing worked.
She told The Times in July that she was tempted to look for a “Dr. Kevorkian type,” someone who would help put her out of her misery.
She found that, her family said, in the form of not seeking medical treatment that would have kept her alive.
In early March, Anderson’s husband tried calling her at home, but she didn’t answer. He called police to do a wellness check. They found her on the floor, disoriented.
An ambulance took her to the hospital, where doctors confirmed she was in kidney failure. They said dialysis was an option. She refused it.
A few days later, her condition deteriorating, she chose to go home and die peacefully, her family and hospice by her side.
“If she knew she would have had pain medication and wouldn’t have had to suffer, she absolutely would have agreed to do dialysis,” said Latronica, a 29-year-old truck driver from Diamond, Illinois.
“She said, ‘This is my way out.'”
Anderson had organized and led a local Don’t Punish Pain rally last September in Valparaiso. The national founder of that movement, Claudia Merandi, said that despite the CDC’s clarifications, things are actually getting worse for chronic pain patients. That’s because many doctors are increasingly afraid they’ll get arrested if the DEA decides they’re prescribing too many painkillers.
“The fear of retribution is very real, it’s very great, and it needs to stop,” said Merandi, 50, a former stenographer from East Providence, Rhode Island who is on disability because of Crohn’s disease.
She said the one thing that has changed is that chronic pain patients’ voices are being heard. Also, lawmakers are starting to introduce legislation to protect pain patients, doctors and pharmacists who are legitimating using and prescribing painkillers. But it’s still not enough, she said.
Merandi said people in her movement are killing themselves or opting to die rather than seek medical care on a monthly basis, often veterans.
“They’re too weak to fight. They don’t want to fight. What are they going to fight for?” she said. “They’re going to come back into a life of no medication. What’s the point of living? That was Dawn. Dawn didn’t want to live.”
And even if health care providers go back to prescribing more painkillers for legitimate pain patients, it’s already too late for families like Anderson’s.
“Without a doubt, I know she would still be alive if she had the medication she needed,” Latronica said. “That was the only thing that allowed her to live functionally and manageably. When they took it away, that took away her will to live.
“She had three granddaughters and two daughters and a husband. She wanted to live. She tried. She just couldn’t do it any longer.”
Latronica said that even as her mother struggled during her final months, the fight on behalf of other chronic pain patients sustained her, gave her something to be proud of, gave her life.
“The pain community needs justice. My mom needs justice,” Latronica said. “I don’t want her death to be in vain.”