By Stefan G. Kertesz, MD
How can we understand and prevent the suicides of patients in the wake of nationwide reductions in opioid prescribing?
Answering that question is the passion and commitment of our research team at the University of Alabama at Birmingham School of Medicine. Our study’s name, “CSI: OPIOIDs,” stands for “Clinical Context of Suicide Following Opioid Transitions.” Let me tell you why we are doing this work, what we do, and how you can help.
Opioid prescribing in the US started falling in 2012, after a decade of steady increases. The original run-up in prescribing was far from careful and a judicious correction was needed. A judicious correction, however, is not what happened. Instead, opioid prescriptions fell, rapidly, to levels lower than those seen in 2000. It may require a book to understand how prescribers swung so easily from one extreme to another.
For the 5 to 9 million patients who were taking prescription opioids long-term, reductions and stoppages were often rapid, according studies in the US and Canada. In one Medicare study, 81% of long-term opioid discontinuations were abrupt, often leaving patients in withdrawal and uncontrolled pain.
Prescription opioid reductions are not always good, and not always bad. For some patients, modest reductions are achievable without evident harm, especially if a reduction is what the patient wants to achieve. For others, the outcomes appear to be harmful. Several who serve on our research team have witnessed friends, family, or patients deteriorate physically or emotionally following a reduction. Some attempted suicide and, tragically, others died by suicide.
Large database analyses tell a similar (and nuanced) story. In research derived from Kaiser Permanente, Veterans Health Administration, Oregon’s Medicaid program, and Canadian databases, patient outcomes were diverse. Some researchers found no safety problems after opioid reductions, but others describe suicides, mental health crises, medical deteriorations, and overdoses at frequencies that are too common to ignore. These are not acceptable outcomes.
The shocking nature of patient suicides led some experts to jump to conclusions, arguing that acute withdrawal from opioids explains all the bad outcomes, and that slow reductions or tapers prevent harm. But that’s not true. In two studies, mental health crises or overdoses occurred at elevated rates a full year after modest dose reductions, such as a 39% reduction in one national study.
Jumping to conclusions about why something bad happens is another way of saying, “We don’t want to investigate.”
After a suicide, we think the right step – the respectful step – is to ask questions: What happened here? Why did it happen? What were all the factors in a person’s life that might have played a role in their death? And where does an opioid reduction fit, or not fit, into explaining what happened?
Asking those questions is crucial. The decision to end one’s life through suicide is rarely simple, but understanding the person’s history and reasoning will spur better approaches to care. Approaching these questions through in-depth rigorous research, rather than pretending we already know why suicides happen, could also induce leaders to take them more seriously than they have to date.
Just like investigators examining a plane crash, we intend to collect the full story of what happened, carrying out detailed interviews and, where possible, reviewing medical records. Studying just one case can tell us a great deal. But our goal is to study over 100 patient suicides.
This approach is called a “psychological autopsy interview.” That phrase can sound a bit daunting. In reality, it’s an interview where we ask about the person’s life, their health, their care, and what happened before they died.
How You Can Help
We seek people who have lost somebody, such as a close family member or good friend, to suicide after a prescription opioid reduction. We are studying deaths in the US among veterans and civilians, and hope to interview more than one person for each suicide.
Interview topics range from health and social functioning, to care changes prior to death, to whether the person who died felt a sense of connection to others or perceived themselves to be a burden. To our knowledge, no other team is attempting to do this work.
We face a singular challenge: recruitment. That’s why we need your help. For the last 60 years, studies of suicides involved collaboration with medical examiners in a state or county. That option is not available to us, because medical examiners usually don’t know about health care changes that took place prior to a person’s death.
There is no master list of suicides that occurred following a reduction or stoppage in opioids. Yet those deaths are precisely the ones we need to learn about. The only way we can document those cases is to reach out to the public and ask if survivors are willing to come to us, either online or by phone (1-866-283-7223, select option #1).
If enough survivors are willing to participate in this initiative, then we can begin to describe, understand, and prevent future devastating tragedies.
For the people who are considering participation in the study and wondering what risks are involved, let me offer some reassurance. First, there is an online questionnaire housed on a very secure server. A person can start it and stop at any point if they choose, no questions asked.
Also, this study is protected by two federal “Certificates of Confidentiality.” These federal orders prohibit release of identifiable data under any circumstances, even a court order. We are aware that some families are pursuing legal action, and this was a major factor in our decision to take this extra step to protect participants.
When a person completes the survey, we will evaluate their answers to see how confident they were that the death was likely a suicide, and whether the death occurred after a prescription opioid dose reduction. If they meet these criteria, then we will reach out to discuss further participation in the research study.
What follows is a more detailed informed consent process. There is a modest incentive ($100) for being interviewed, and a smaller one if the person can work with our medical record team. It is not necessary for a survivor to have access to a loved one’s medical records.
So far, the interviews we’ve conducted have been serious, warm and thought-provoking. At the outset, we were concerned that these interviews could be upsetting. We learned from reading the literature on this type of interview, that the individuals who agree to participate usually have a desire to share their feelings about their loved one’s death and tend to perceive the interview as a positive experience.
In the long-run, we hope that after looking at 110 suicides, we can formulate recommendations and programs for care, without leaping to any conclusions. We want to help save lives.
A study like this is clearly not the only answer to an ongoing tragedy. Research is almost never a “quick answer” to anything. That’s why many members of our team have already engaged in direct advocacy with federal agencies. It was 4 years ago that several of us urged the CDC to issue a clarification regarding its 2016 Guideline on Prescribing Opioids for Pain. A revised CDC guideline was released last year, but we’ve noticed that the health care situation faced by countless patients with pain remains traumatic and unsettled.
These events are hidden and need exploration. We need to take this next step and learn more to prevent further tragedies and lost lives.
If you would like to enter the screening survey for this research, please click here.
If you would like to learn more general information about our study, click here.
If you know a group of patients or clinicians who would like a flyer, presentation, or a link to our study, please let us know by email at csiopioids@uabmc.edu or stefan.kertesz@va.gov
Stefan G. Kertesz, MD, a Professor of Medicine and Public Health at the University of Alabama at Birmingham School of Medicine, and a physician-investigator at the Birmingham Alabama Veterans Healthcare System. Stefan is Principal Investigator for the CSI: OPIOIDs study.
Views expressed in this column are those of Dr. Kertesz and do not represent official views of the United States Department of Veterans Affairs or any state agency.
For anyone thinking about suicide, please contact the 988 Suicide & Crisis Lifeline, available online, via chat, or by dialing “988.” A comprehensive set of resources can also be found at this link.
