Study Launched to Look at Suicides of Chronic Pain Patients
/By Pat Anson, PNN Editor
One of the more unrecognized and under-reported aspects of the opioid crisis is what happened to millions of chronic pain patients in the U.S. who were tapered or cut off from opioid medication in the name of preventing addiction and overdoses.
We know a lot about opioid prescribing. The number of prescriptions has fallen by about a third since their peak. And the supply of opioid pain relievers, according to the DEA, is at its lowest level since 2006. We can literally count them down to the last pill.
But we don’t know what happened to the patients. How many were abandoned by their doctors? How many became disabled or lost their jobs? How many died from strokes or heart attacks? How many surrendered to despair by taking their own lives? We simply don’t know.
Critics say pain patients have fallen through the wide cracks of a cruel and willfully blind public health experiment.
“I’ve seen patients destabilized and nearly die by suicide after prescription opioids were stopped. I’ve been receiving notice of these for several years now. And I’ve never really been in a situation where a large number of patients were dying and health systems do not systematically study it and try to stop it,” says Stefan Kertesz, MD, a professor of medicine at University of Alabama at Birmingham (UAB).
“We have setup systems that insist on measuring prescription opioid doses and incentivizing reduction, but which are not measuring the outcomes of that change in care. Hospitals and clinics are not even asked to check what happened to the patient.”
In one of the first efforts to find out, Kertesz and co-investigator Allyson Varley, PhD, are recruiting family members and close friends of pain patients who died by suicide for a study to see what happened to their loved ones after changes were made in their opioid medication.
“What we’re trying to do is marry what patients are telling us is needed with scientific rigor, so that the appropriate people will listen to us when we say there is a problem,” said Varley, who works in the UAB Center for Addiction and Pain Prevention and Intervention.
“We are very committed to this. As long as people are having unsuccessful tapers, we’re interested in studying what’s happening and how to make it better, by increasing access to the care that you need when you have chronic pain, whether that’s opioids or not.”
Reaching Out to Survivors
The dead can no longer speak for themselves, which is why the survey is focused on reaching surviving loved ones who witnessed the pain and despair of their deceased spouse, child, parent, partner or friend.
“We have to reach survivors who believe that is what they saw, and who can provide some preliminary information to hint that is really what happened,” Kertesz explained.
No one knows with any certainty how many pain patients have died by suicide in recent years, but it probably runs in the thousands. We’ve shared some of their stories on PNN, including that of Meredith Lawrence, who witnessed the suicide of her husband, Jay.
“I lost my husband in 2017 by suicide after his medications were taken away,” Lawrence said. “At that point, I wrote about our experience for the public, and it drew attention nationally. To see Dr. Kertesz and his colleagues take this seriously matters to me because nobody should lose a loved one over something treatable.”
Much of the groundwork for the UAB survey was laid by patient advocate Anne Fuqua, who began compiling information about patient suicides several years ago. Her list has grown to over 100 well-documented suicides.
“This is truly a dream come true that these deaths are being taken seriously. When a dear friend died of a heart attack in 2014, the only way I could cope was finding and memorializing these deaths,” said Fuqua. “I could never have imagined this would come to fruition.”
Suicides Rising
The suicide rate in the U.S. has risen by about a third since the turn of the century, but there is no easy explanation for the increase. Suicides usually involve multiple factors, such as inadequate healthcare, mental health issues, drug and alcohol abuse, social isolation and economic inequality – what has been called “deaths of despair.” Throw in poorly treated or untreated pain and you have a recipe for suicidal thoughts.
Kertesz and Varley are hoping to get at least 200 family members and friends to participate in their survey. More would be better, because it could lead to larger studies that will help them document what is happening in the pain community.
“If we can convince people that this is a tragedy that needs to stop and we are passionately committed to it, and some people come forward, maybe we can get external funding to allow us to do the research that’s really needed,” says Kertesz. “It’s very hard to make the case when you don’t have pilot data to show that these families are willing to come forward.
“If one outcome of starting the study is that policymakers begin to realize that there is a serious risk to having physicians flee their patients, that would be a helpful outcome. It might change the dialogue a bit.”
To participate in the online survey, click here. Or call 1-866-283-7223. The survey will take about 25 minutes. Respondents will be asked a series of questions about the loved one who died, their healthcare and life situation at the time of death.
