Here’s a very brief video update about the CSI:OPIOIDs study, which aims to understand suicides occurring in chronic pain. A few important points:
We have changed details to mask identities
We know the situation some with chronic pain face now seems hopeless. Please know this: many of us on the team are working hard to try make the situation better
If you are aware of suicide loss survivors, please share word of this study!
For people in crisis, we want to make people aware of the resources we know about:
In the USA, the 988 Lifeline (text or phone)
Worldwide, the Reddit r/SuicideWatch “wiki” has a global directory of resources.
Please join us this Tuesday 9/24/24 12 noon EDT at the TAPS Institute for Hope and Healing Webinar: “Suicide Loss Survivor Experiences: Contributing to Suicide Prevention Opportunities”.
We are both presenting through the good will of an amazing organization: Tragedy Assistance Program for Survivors (TAPS) Institute for Hope and Healing, a leader in training and education for bereavement professionals, bereaved individuals, and grieving military, veteran and civilian families.
“For a better way of saying it, I give a sh*t. Because it’s about helping people”
Hello Mark, tell us about yourself!
I am Mark Flower. I work with the CSI:OPIOIDs study as an advisor who represents Veterans and people with addiction history.
What is your professional background or personal connection to this work. Why are you interested in this study?
I am a Veteran in recovery. I’ve unfortunately lost too many people I know to the journey of addiction and related issues. Also, suicide is a big part of it. I’ve known too many people in my life who have died by suicide and it shouldn’t have to be that way. Whenever I can work on a project to try to reduce that it’s always good.
What difference do you hope this work will make to others?
I’m hoping that the work we are doing will allow for more awareness in the community. Finding an alternative to the opioids might be very important. My hope is, out of this project, that we can instill that people will have to help with that process. And also, for family members… it’s a thing, that the more they are aware of it the more they can probably become helpful in the process of possibly preventing a suicide.
What has been the most interesting/surprising/meaningful thing about doing this work, so far?
For me, the cool thing was, and I guess surprising, is the conundrum of how we used to deal with pain through opioids. And it has finally come to a point where opioids aren’t necessarily the best way to deal with pain, even though in some cases it may be necessary. It’s not surprising that it was a problem, but that we are finally looking at that.
What ideas do you have that might help us think about suicide and how to prevent it? Is there a special resource or place to learn more about these ideas?
To me personally, I think a more whole-health approach to the suicide prevention is actually a good thing. Some of the folks that I have lost, it wasn’t really the mental health issue that triggered something. IT was more of an outside thing that triggered it. Like say they are in a financial crisis all of a sudden. Or say a divorce is starting to go down. And to me that’s part of the whole health part. And once we are in crisis, that also starts triggering the mental health side of that journey.
What do you think we need to know about Veterans and suicide risk?
Well I’m a Veteran and I want to share three things.
One is I’m trained to fix things, whatever that is, whatever the mission may be.
Two is I’m trained to be stubborn.
Three is I’m trained to think about everybody else and not myself. And in some ways that gets in the way of taking care of myself.
What do you think people in our society might need to learn at this time about pain and its care?
That’s a complicated question for me, because pain is real even if it may not be. When we kind of get used to the pain, it never really goes away, kind of like that phantom pain where it’s always hurting. I’m not saying to minimize that, but pain is still real. And if I was going to instill something in folks, pain is real in the individual. And even though opioids, in specific may be very appropriate, but as a solution it hurts people.
For a better way of saying it, I give a sh*t. That’s kind of why I do what I do. Because it’s really about helping people.
Suicide is public health challenge that affects Veterans, active members of the armed forces, and their families. Our team has now launched its first public advertising with the well-regarded Military Times family of publications. We are proud to share our message and our commitment to suicide prevention through a news service used by many who are actively serving the U.S. armed forces, others in retirement, and military families.
Our VA research study looks at one key context for suicide: pain with opioid reduction. It’s important to remember that suicide is a complex event, without a single cause. For people who are in crisis, please know that the phone number 988 will reach the National Suicide and Crisis Lifeline, as will texts to 838255, and chat with 988lifeline.org/chat
I am Allyson Varley. I work with the CSI:OPIOIDs study as co-investigator, qualitative interviewer and analyst.
What is your professional background or personal connection to this work. Why are you interested in this study?
I joined Dr. Kertesz’s lab to work on this study, specifically. I have always had an interest in chronic pain and opioid prescribing with a focus on implementation science. This was a unique way to study de-implementation or deprescribing of opioids from the patient perspective.
What has been the most interesting/surprising/meaningful thing about doing this work, so far?
Conducting psychological autopsy interviews is both challenging and rewarding. Many interviewees have their own lived experience with pain and share related insights with us. I have learned so much from our participants and am super grateful for their willingness to share their stories and the stories of their loved ones they lost.
What do you think people in our society might need to learn at this time about pain and its care?
One size does not fit all. For treatments, guidelines, implementation strategies, etc. Pain is a very complex health issue, and systems-level interventions must take this into consideration.
This week, lead investigator Dr. Stefan Kertesz was interviewed for the amazing “Hope Illuminated” podcast with the founder of United Suicide Survivors International (USSI),Dr. Sally Spencer-Thomas. Sally is a suicide loss survivor, a clinical psychologist, an advocate and a researcher, and the leader of a major organization focused on preventing suicide.
The podcast host describes the episode as delving “into the repercussions of removing individuals from opioid medications while they grapple with unmanageable, intractable pain, shedding light on the multifaceted challenges faced by both patients and healthcare professionals.”
Stefan was deeply moved by the podcast. In the podcast he says this: “The story of the opioid crisis involves leaping to conclusions that problems can be solved quickly without thinking too deeply. The situation of people with pain, with disability, with dependence, with addiction, is not one of those problems. And the best thing we can do is really pay close attention to the details of their life and ask that the health care system listen and (be) responsive.”
I’m the project coordinator for CSI:OPIOIDs – this means that I oversee all aspects of the study ranging from administrative tasks like ethical review with the Institutional Review Board (IRB) and contracting to data and analytical tasks like conducting interviews and taking part in qualitative analyses.
What is your professional background or personal connection to this work. Why are you interested in this study?
I’ve worked in Research at the VA for 7 years. The studies I’ve worked on have focused on several different topic areas such as homelessness, quality care experiences among Veterans with homeless experience, and care changes due to the COVID-19 pandemic. I’ve always loved working with Veterans, in college I worked with a local nonprofit called Three Hots and a Cot.
I would go to my nearest Three Hots and a Cot house each week to talk to the folks there and update their resource guide which provided contact information on local organizations that can assist with medical needs, job skills, and general resource connectors. Since that experience, I’ve known that I would like to build a career focused on supporting those who have served our country through military service.
There are 2 special things about CSI:OPIOIDs that drew me to it: 1. The opportunity to collect completely new data on a serious problem facing our country and 2. The opportunity to potentially inform change both within and outside of the VA. Though the purpose of the study is not to inform policy, I do believe collecting these narratives of individual’s pain and care journeys and noting the personal and systems-level factors present in these stories will finally elucidate the trends we’re seeing in quantitative research.
What has been the most interesting/surprising/meaningful thing about doing this work, so far?
Right off the bat, the most meaningful part of this work has been lending an ear to participants telling us about their loss.
Obviously the goal of the study is to build a narrative structure for pre-existing statistical work in this field and identify themes that surround these deaths, but I am proud to offer even a small amount of comfort to individuals who have lost loved ones this way.
This is a difficult topic to talk about – much less to complete a full interview on – and I have been so grateful to have the opportunity to talk with our participants and let them know that we care about these stories.
What do you think people in our society might need to learn at this time about pain and its care?
I am not a clinician, but my number one takeaway is that healthcare and medicine are truly individual and often times governmental oversight of medication and broad-strokes policies can be very harmful.
Doctors need to feel safe and secure in their provision of treatment and patients need to have shared decision making in regards to their personal care. Chronic pain is an incredibly complex issue and even at the individual-level a perfect answer probably won’t exist, but sweeping guidelines that fully restrict access to different lines of care are less likely to help patients find effective treatment.
Meet CSI:OPIOIDs team member, Dr. Adam Gordon at VA Salt Lake City and University of Utah!
Hello Adam, tell us about yourself!
I’m Adam Gordon. I’m a physician in internal medicine and addiction medicine. I’m also a health services investigator: I seek to improve the access and quality of care for patients who are vulnerable, including those with pain and/or addiction. I am also a gardener! I have worked with Dr. Kertesz for over 2 decades and we are passionate about reducing the harms associated with involuntary opioid tapering and tapering in general. Indeed, we have published many articles about this. I am passionate about the CSI:OPIOIDs study. I offer advice and my expertise to the research team, but more importantly I want to learn from patients, families, and significant others about lives lost.
What has been the most interesting/surprising/meaningful thing about doing this work, so far?
We have known from prior studies that health care providers have had difficulty in addressing pain and opioid prescribing for pain. Often times, the care may not be patient-centric. Many providers follow guidelines strictly, often not listening to patients or individualizing patient care. The work of CSI-OPIOIDS validates these thoughts. The narratives we have heard indicate that patients with chronic pain are very vulnerable. Rapport, patient-collaboration, and patient-driven health care choices are important. My hope is that CSI:OPIOIDS will change how health care providers perceive patients with chronic and acute pain and change how they address pain and opioid prescribing among these patients.
What ideas do you have that might help us think about suicide and how to prevent it?
Suicide is obviously not the most optimum outcome. Preventing suicide is incredibly important. CSI:OPIOIDS may be the critical research that can prevent suicide among patients with chronic pain. Changing health care provider perceptions and stigma regarding patients with chronic pain may be the first step to improve their interaction with these patients.
What do you think people in our society might need to learn at this time about pain and its care?
It is unfortunate that our health care training has not included more patient-centric approaches for acute and chronic pain. Thus, existing health care providers are often unclear how to address pain among their patients. With guidelines and health insurers may give a false mandate to “do this or that” with every patient, health care providers often cannot individualize care. I am concerned about patient abandonment and patient distrust in the health care system. Patients with pain need to trust their providers and not feel that they have to justify their pain or existing treatment to every provider. Health care providers need to trust their patients too. Patient and provider rapport is important in addressing acute and chronic pain. CSI:OPIOIDS will help build this rapport.
The CSI:OPIOIDs team includes many of us who are moved to this work by a strong sense of passion to prevent suicide and to improve the care of people with pain.
Dr. Kertesz began to speak out against harm to patients with pain in 2016. By 2019, he had published opinion pieces in journals across the country. While many people welcomed his voice, some were angry that he spoke out. Some even called his supervisors to complain about him, or spoke to the press.
Dr. Kertesz recently wrote about his experience as an advocate, where he had to confront some of his own fears. He described being “rattled” by criticism, but also finding the strength to persevere, based on a mission of fundamental fairness for everyone, regardless of disability or power.
In his latest article for the blog “Sensible Medicine” he writes: “there is something in me that has always recoiled against making the short end of the stick even shorter for whoever is already on that end.” The full story (and a recording of it by Dr. Kertesz) is online here
Dr. Thomas Joiner is a leading national expert on suicide. He is also a chaired professor at Florida State University. He has written several books and hundreds of scientific articles on suicide, and he is a key advisor to the CSI:OPIOIDs study. He also has developed an important theory that helps us begin to think about why people take their lives. Our principal investigator, Dr. Stefan Kertesz, recently spoke with Dr. Thomas Joiner. Read more below.
Q: Dr. Joiner, can you tell us where you grew up and why you became a psychologist?
A: I was born and raised in Atlanta. I was initially drawn to philosophy but grew frustrated with the abundance of questions and the lack of answers. I noticed the psychologists were asking the same kinds of questions and then empirically arbitrating them. I thought that was very appealing. As for why a clinical psychologist, I just thought and still think that psychopathology is inherently fascinating. It is also a major source of human suffering and so trying to contribute to the reduction of suffering is also appealing to me.
Q: What has led you to put your effort into suicide prevention?
A: Initially it was the intellectual interest in philosophical questions having to do with existence, the lack of it, meaning, and the lack of it as well. Then, it became deeply personal and urgent when my dad took his own life when I was in graduate school.
Q: Our team sought for advice when we were just getting started. Why did you decide to advise the CSI:OPIOIDs project?
A: I’m interested in virtually any effort that has suicide prevention potential as this effort plainly does.
Q: There’s a theory about why people sometimes take their own lives. It’s credited to you. In simple terms, the theory says that people are more likely die by suicide when a few different things happen together. Two of those things have to do with how they feel in relationship to others. One has to do with feeling alone, and the other with felling like a burden. Can you tell us more about what those mean?
A: I believe the two main pillars of human nature are autonomy/agency and inter-dependence/connection. These also account for things like meaning. If those are undermined–as they are when people feel that they do not belong and that they burden others–reasons for living, meaning, and purpose are reduced.
Q: People talk about a theories in different ways. Sometimes they mean “it’s proven reality” like Einstein’s “Theory of Relativity”. Sometimes they mean, “this is an idea we are still developing and trying to document”. Which kind of theory is this?
A: I’m with the philosopher of science Karl Popper that there generally is no “proven” category. The only categories are “false” and “not false…yet”. But a problem with Popper’s philosophy, one that he recognized, is that falsifications can be spurious, and so the judgment is difficult. As for my theory, I would use terms like “useful, including clinically “and “explanatory, at least partially.” There is a considerable empirical basis behind it, though it is unsurprisingly imperfect.
Q: Our study looks at a difficult event that happens in US health care where a person with pain loses access to pain medication. Some people do wind up taking their own lives and others don’t. What do you think are important questions for us to ask as we go forward?
A: I think an important point is that people can adapt to all sorts of things if they’re just given time and support. Exploring ways to disseminate that view seems like a potentially significant contribution to me.
Q: Many of us who work with the study know people who have lost someone to suicide, and we don’t always know what to say when we aren’t wearing our research hats. How can we be helpful to families and friends who have lost someone?
A: People can lose sight of the fact that the word “death” is of course an important part of the term “death by suicide.” It is a death, like a cardiac death or a car accident, and people should be guided in their reactions by remembering that.
UAB is an Equal Employment/Equal Educational Opportunity Institution dedicated to providing equal opportunities and equal access to all individuals regardless of race, color, religion, ethnic or national origin, sex (including pregnancy), genetic information, age, disability, religion, sexual orientation, gender identity, gender expression, and veteran’s status. As required by Title IX, UAB prohibits sex discrimination in any education program or activity that it operates. Individuals may report concerns or questions to UAB’s Assistant Vice President and Senior Title IX Coordinator. The Title IX notice of nondiscrimination is located at uab.edu/titleix.
