Hello, I'm Nitin Gokde, I'm Chief of Research and Deputy Medical Director at the American Psychiatric Association. It's my honor and privilege to welcome all of you to listen to Dr. Kathy Scheer for the Excellence in Research Award in Psychiatry. Dr. Kathryn Scheer is Marion E. Kenworthy Professor of Psychiatry at Columbia University School of Social Work. She graduated with honors from University of Chicago and attended medical school at Tufts University. After completing a residency in psychiatry at Payne Whitney Clinic, Cornell University, Department of Psychiatry, and a fellowship in psychosomatic medicine at Montefiore Hospital of Albert Einstein College of Medicine, she joined the faculty in the Department of Psychiatry at Cornell. At Cornell, she established the Department of Psychiatry's first clinical research program in anxiety disorders and obtained research grants to study panic disorder, obsessive compulsive disorder, and generalized anxiety disorder before moving to the University of Pittsburgh. There she served as Professor of Psychiatry until January 2006. She continued her research, and her research has been in anxiety disorders, including comorbid anxiety and depression, with a primary focus on psychotherapy studies. Her recent research is in the area of bereavement and grief. This work resulted in completion of the first randomized controlled treatment study targeting the condition of complicated grief, showing efficacy of a modified form of interpersonal psychotherapy. Dr. Scheer is an author, or co-author, of more than 200 publications and a frequent presenter at national and international meetings. She has served as co-chair of the American Psychiatric Association Treatment Guidelines for Panic Disorder, as chair of annual meeting of the Anxiety Disorders Association of America, and president of the Association for Clinical Psychosocial Research. She is a frequent consultant to the national and international groups that are interested in bereavement and grief. She has developed assessment instruments, including the Panic Disorder Severity Scale, the Generalized Anxiety Disorder Severity Scale, and several new grief assessment measures. It's my honor, again, to welcome Dr. Scheer. Again, thank you for your patience. Thank me for my patience, too. Okay, so I do have just one disclosure, which is a book contract for Guilford and True Confessions. That book contract has been in effect for, I think, about 15 years, so I hope it will get finished. And there are so many people, there are literally hundreds and hundreds of people who I've worked with over the course of this period. And this is just a small snapshot of them. I'm sure I left many, many out. But I wanted to say thank you to everyone. So I also want to start with a bit of a preview. I think we're here today because of this event, which is that on March 18, 2022, there was a public announcement. There was actually the release of DSM-5-TR, as you I'm sure all know. And that was followed one week later, which maybe many of you saw, but maybe not everyone, with an article in the New York Times, one could say a bully pulpit, which was pretty egregious. It not only was, it was written by someone I did personally speak to. She was absolutely lovely. She also did not fact check anything and got a lot of facts wrong. And also, the title, of course, of this article is completely off base. So I wanted to just start in case there are people who are still confused about this, because also I included a letter to the editor that followed. There were 1,300 or so, more than that, comments and or letters to the editor that followed the publication of that article, one of which came from Dr. Benjamin Sedak, who I think we all know and respect greatly. And he also said there's no need for this diagnosis. So I don't know how many people in this audience might feel that way, but I want to try to explain why I think there actually is. So I want to give just sort of a brief summary of how it got there and why it's not at all an answer to the question of how long it should take to grieve. That's not what PGD is all about. So the debate that took so long for it to get included, because the first time this condition was actually proposed for inclusion in DSM was in the 1990s by Marty Horowitz, who proposed addition of the condition complicated grief. And his criteria are very similar to the ones that we have right now. But, you know, he was told that there wasn't enough research, which at that time was kind of true. But after that, there was a huge amount of research. We actually submitted the proposal. We submitted a proposal in February of 2019 that was ultimately accepted as the PGD diagnosis. And what took so long was the careful review that it got. But I can tell you that our proposal included reference to some 500 papers in the literature. And many people who've been involved in DSM have said that it's one of the best supported diagnoses that have ever been included in the book. So it has a lot of empirical support behind it. What took so long is figuring out what the exact criteria should be. And the story of Marty Horowitz is kind of informative in that way, because we could have used his criteria. We could have used any of the criteria, which I just want to make that point. The problem, really, that we had, the two of us, two of the groups that submitted proposals, one was a community-based sort of survey research team led by Holly Priggerson, and the other was our team, which was entirely clinically-based. And that's kind of a problem, because neither really had sufficient representation. And we were having trouble, for one reason or another, working together. So the community-based research was limited also to the first year of bereavement. And that's not when we usually see people clinically. If any of you treat people with this condition, you know they generally come after two years or more. And there was no measure of clinical utility. And, of course, we don't have a gold standard other than that. So we had good clinical utility, but our work was not community-based. So that's a problem, too. So that's really what had to be worked out. And, actually, my colleague, Steve Koza, who did the first-ever military family bereavement survey, kind of made the — what he did was really, really important, because he took his — he had data, he had enough symptoms, and he had the data to show that we really are talking about the same thing in the different criteria sets that were proposed. That's what this shows, because — and what the difference is, is how rigorous, you know, how restrictive, really, the criteria need to be. And we needed to be somewhere around here, I guess, and a little bit bigger than — this was the most rigorous criteria. This was the second-most. The third-most in this outer part is the ICD, actually, criteria, which are the most flexible of all of them. So once we had that information, we could all relax a little, because it really didn't matter that much what those symptoms were. And we had a — there was a really very conscientious and hardworking and smart panel that was brought together, led by Dr. David Brent, and came up with these criteria, which you can find in DSM-5TR. So that's my preamble, except — oh, I'm going to say a few more things before I sort of talk to you about the main part of this talk. One is that we know a little bit about prevalence and risk factors, and because we're sort of behind, I'm not going to walk through these for you. But, you know, we're still — without criteria, there's no way to have prevalence, right? Because if you vary criteria by one or two, even by one item, you get — you can get vastly different prevalence rates. So that's just one of those things. So we really don't know, but our estimates are that, after natural death, somewhere between 3 and 5 — 3 and 10 percent of people will develop what we used to call complicated grief and now call prolonged grief disorder. And then there, as you can see, risk factors and some potentially mutable ones, which I'm not talking about today, but I think it's of great interest to think about them and think what we can do to take advantage of that. So I wanted to show you some — three people who had this condition so we can kind of bring it to life. Oops. Okay, so we — you can't hear it, right? What happened to our AV people? Thank you. Let's see if I can do anything. All right. You know what? I'm going to — while we're waiting for them, I'm also going to — well, so I'm also going to show you a video — excuse me — of Dr. Rebecca Shiner, who lost her 26-year-old son to suicide not even two years ago. And, of course, she's still grieving intensely, but — and you can hear — okay. You can hear that. I'm going to keep going until we get this. Okay. So and then we'll talk if you want. If anyone wants to say anything while we're doing this, please feel free to do that because this is what — yeah, it's just — it's playing here but not on the — oops. The main difference is — there are a couple of differences, and the two main ones, I would say, are that — and if you know them, please feel free or if anyone else does, but one of them is that it's a six-month time frame, and the other has to do with being able to use avoidance, I think, as a main symptom. Children do grieve very differently from adults, and they, of course, manage their emotions differently. That's part of it, but — yeah. Sure. Anybody else have anything? Yeah. You have to — please use the — yeah. That's such a great question. Did everyone hear it? So this is, you're asking about grief that occurs when a family member is very ill, especially with dementia, where you're essentially losing the family member, but they didn't die, so they're still there. And so the grief over the loss continues. I have not studied that myself. Our team hasn't studied it. People have been studying non-death grief, and actually we do have on our website a webinar by someone named Francisca Meissner, who was studying it. You can watch it for free if you want, so she has something to say about it, but basically I think that grief after non-death losses, which this would fall into, is very similar. I think the brain is parsimonious, and what we're going to talk about in a few minutes, if we can ever do it, is the idea that our work has centered around the idea that we can best understand grief from an attachment theory perspective, and if you look at it from that way, I think what it tells you is that close attachments are so important to everyone and to all of us, and so the brain has a way to deal with loss of close attachments. We make that basic assumption so that we adapt to those losses, and the way we do that basically is to learn to live with the fact of the reality, right? So that's where I think this could be relevant, because learning to live with the reality that your loved one is not the same, and then that's part of it, and the other part of it is being able to restore your own capacity for well-being, which is often very hard for caregivers, because there's a lot of sort of survivor guilt, and there's a lot of, we call it caregiver self-blame, that's part of this, okay, we did it, yay, oh, genius. Yeah, okay, so this is going back to what is prolonged grief disorder, this is what it looks like, even though we called it complicated grief, this is what it looks like, whatever we call it, whatever we call it, oh, I have to do this back again, yeah. My involvement in the treatment was around the death of my mother, however, my husband died about two or three years later, and I think that really exacerbated the situation, but my mom was almost 85 years old, had really only been ill for less than a month, and she passed away, we were very, very close, I could not imagine living without her. I never really recovered, because her death left this gaping hole inside of me, and although my husband was still alive, he wasn't my mom, so I sort of just kind of wandered around through life, I recall looking out my bedroom window, and being a little angry, because everybody else in the world seemed to just be going on their merry way, as though nothing has happened, I'm thinking, how can you do this, don't you know that the world has lost somebody, you know, wonderful. My 19-year-old daughter Jackie died in a car wreck on August 21st of the year 2000, she was out that evening, I was told to come home at midnight, she got home about a quarter to twelve, she was real excited, asked me if she could go out and say goodbye to one more friend, because she was, we were taking her to college on that Tuesday morning, and she left, and I went to bed, and we got a phone call at about 3.15 in the morning, asking us if our daughter was home, I jumped out of bed and went to her room, and she hadn't, she wasn't there, there wasn't, not a whole lot that I remember about that morning, other than sitting in total disbelief, and didn't want to eat, didn't want to do anything, spent most of the day crying, felt like somebody had torn my heart out, it was my little girl. You know, as time went on, I found that I wasn't progressing, or being able to focus myself on work, on anything that I'd like to do, all I could find myself doing is going to work, getting some work done, going in the back room crying a lot. The more I thought about it, I realized that I wasn't doing anything with my life. It's been twenty years, my husband died at a relatively young age, he was fifty-three, and I got stuck, I just couldn't move on from that, I just grieved and grieved and grieved, and I thought that somehow that it was my fault that I hadn't been able to diagnose his tumor, so then when he died there was just this giant hole that just seemed impossible to fill. For years I had horrible nightmares, you know, and I'd wake up in the morning and I'd think, no, this did not happen, he's still here. I didn't care whether I lived or died at that point, to be honest, but I had this child, so I would lay on the couch and cry every night, and then I would get up in the morning and I would go to work and do my job, and then I would come home and I would lay on the couch and cry, and I did that for years, that's all I could do, I was paralyzed. I think these are pretty powerful stories, and what always struck me is that, as you see, these are very different people, different kinds of losses, and if you, you know, the things that they're telling you are almost exactly the same, I mean, basically that grief has brought their life to a standstill, and in a similar kind of way. By contrast, though, as I said, I want to show you, I want to introduce you to Rebecca Shiner, who's a psychology professor at Colgate University, she asked me to tell you that, and her son died less than two years ago, and she recently was in touch with us, and we put her in touch with the Hospice Foundation of America, who made this video where she, so I want you to think about what you just saw, and then her story, and see what you think, I'm going to ask you at the end of this if you think she has prolonged grief disorder, you know, it's been more than a year, so she could, from that standpoint. I know that people often talk about having an experience of shock, where they don't believe it, and they sort of deny what they're experiencing, and I didn't have that experience at all, I knew it, and I understood it completely, I guess, from the moment that I heard, but I was in, yeah, just absolutely excruciating pain. My husband was the person who told me, and during that first conversation, I had enough wherewithal to say to my husband, okay, we have to promise we're not going to let this lead to divorce, and we have to promise that we're going to somehow eventually find our way through this, and try to make something meaningful out of the rest of our lives, but I had no idea, I had no idea how difficult that was going to be, because, yeah, just almost instantly, any sense of meaning was sapped from my life. It was, I had always had this very robust sense of the purpose and value of my life, and it was sort of gone instantaneously, and then physically, I was really, I had never grieved really before, I had not lost a parent at that point, I didn't realize how physical it would be, and I, so I couldn't eat, and I couldn't sleep, my brain appeared to completely stop working, yeah, it was just amazing how, just how profoundly physical, it felt almost like it was biologically programmed, you know, that there was just, yeah, that my body just responded in this complete kind of shutting down, we were almost instantly surrounded by a shocking amount of love and support, I mean, I know there should not be hierarchies or categories of grief, but I mean, let's just say it's among the, if not the greatest loss a person can experience, because it's out of order, you know, it's not something a parent ever imagines having to experience, there's the grief over the child's lost future, like, I cannot, one of the most surefire ways for me to start crying is to think about the future that Leo should have had, and so there's that loss, you know, there's the loss of the child's future, then there's just the loss of the parent's own future, right, I mean, I had looked forward to watching Leo grow through every phase of his adulthood, I had looked forward to him settling into a career and, you know, getting married, potentially having his own children, you know, so it's the loss both of the child's future and the parent's hoped for and expected future, so it's just disorienting in a way that it's just all, you know, sort of all-encompassing, I picture myself being an old lady, still grieving my child, but, you know, I guess my hope is that I'm going to continue to try to figure out ways that I can stay engaged in life while carrying that with me, I mean, I guess that's what I'm hoping for, I feel like I'm in this weird kind of in-between place where I feel like I need to be rebuilding my life at the time when most people my age are kind of consolidating, you know, like starting to have grandkids and starting to think about retiring and, you know, this kind of like closing in on the things they've already done in a way, and I think if I did that I would just be full of despair, so I'm trying to, yeah, I'm trying to figure out how to move forward in a way where I'm open to new things, and I'm trying to figure out what those are. I'm trying to figure out how to honor Leo. So what do you know that they're similar, some a little bit similar, right, but also different, very different, right? Everybody see that, how different this is, and yet she is grieving, you know, she's having prolonged grief, I mean, her grief is prolonged and it's going to be for the rest of her life, of course, and that's what Ellen Berry missed, and that's what a lot of people miss. This is not about grieving, it's about grieving a particular kind of grieving where it takes over your life. So now I want to talk a little about how do you, how to understand that, what is it that's happening? So as I mentioned earlier, attachment theory, I think, is a lens that is very helpful in looking at this, and of course we know that attachment is a natural bio-behavioral motivational system, and it's also linked, I think, importantly to caregiving and exploration, as I think, I hope everyone in the room is aware of that, and I think all of this is going to be important in understanding what happens when we lose a relationship, because these, the people that we're close to, there are either our attachment figures and or our caregiving recipients, and usually it goes together, are pretty pivotal in our lives. They play a huge role, of course, they do all the things, again, that are listed on this slide, and that everyone in the room, I'm sure, is aware of, and we also know that they work through some kind of heuristic we call mental representations or working models, and we don't quite understand that, because we don't quite understand memory from a neurobiological standpoint yet, but we're getting there, I think, but in any case, we do know that this, that our mental representations of our loved ones operate, and the things that they do operate both in and out of our awareness. We also know there are these characteristic individual differences in working models, which is usually how we talk about them, but they're actually there for all of us. They're the reason why we can sit here, I can talk here, without having our loved ones present, right? I mean, we feel perfectly comfortable, because we have them within us, and we don't worry about them unless there's some really good reason to. So, one of the things that I didn't know until I started reading about this about in the late 1990s is when this research started to be done, but there are now examples, and this, I think I updated this about five or ten years ago, I don't remember now, but each one of these, of these processes, psychological processes, and physiologic processes also have data behind them showing that the attachment working model has an effect on, a measurable effect on all of these different things. And that's obviously operating out of our awareness. We don't really know that. But when we lose someone, that's going to get disrupted along with the safe haven and secure base functions. And really what we know to be a separation loss response in the attachment system looks amazingly like grief. It really, it's practically the same symptoms. So that's what I meant before. So those symptoms come from the loss of an attachment relationship. So what happens then? So let's go back to talk, well this is why early on I started thinking, well actually grief is put this way. It was actually this, these observations along with C.S. Lewis who wrote a book called A Grief Observed. And he made this, he basically pointed this out. He learned it in his experience of grief which he documented in that little book. But basically grief really is a form of love. But it's not only that. It's well known, loss of someone close is well known to be one of the most severe stressors anybody ever has and that's partly because of the loss of this specific person and all the different roles they play. But also the effect that it has on us is stressful too. And the effect that it has on other people and the effect that it has on our relationships with other people add to the stress. And sometimes there are actual physical consequences of a death. There are things like people lose their home or they lose their income or things like that. But almost always there are a lot of very stressful external as well as internal things that make this a very stressful experience that we all know. And actually grief itself is very stressful and that's something that you learn from people when you see them. But because there's a lot of confusing and mixed feelings and thoughts that occur and these are just some examples of those. So we have a situation where we have a lot of separation stress, separation related stress or separation loss related stress. And also we are gonna have also some, just the event of itself, the death itself is stressful in a sort of traumatic stress way. Almost all people who experience the loss of a loved one describe it as a trauma. So we're debating in the DSM world, there's a debate about how to include people who are bereaved but in our data we've shown that everybody has PTSD symptoms, a lot of them. So what do we do? We cope with stress and there's a lot of research in the bereavement area about bereavement coping and mostly it was very, very influenced by a paper written in 1999 by a Dutch group, Maggie Strobie and Henk Schoot called the Dual Process Model of Coping with Bereavement. And basically what they said is and I've learned this too that we've been thinking of grief and loss as being the way you get kind of through it or whatever is you grieve the loss and then you move on. You grieve the loss and then you move on. But they said wait a minute, that doesn't make any sense, that's not what happens. You actually grieve the loss and restore your capacity to move forward or you deal with things in your life. So you cope with the loss itself and you also cope with the new things in your life, the changed world in your life at the same time, more or less at the same time. They said you oscillate between them and that's had a huge impact on the bereavement field and I think it's really true in many ways. So but Bowlby also said that in the short run, you need to, I mean this is what I really think is the most important point here is that in the short run, a grieving person really needs to kind of have what he called bouts and moratoria of that grief. That you can't, it's so intense and I think Rebecca Shiner just, what she described, her whole body and mind was taken over by this excruciating pain. You can't stay there, you just can't stay there and so your mind does actually naturally oscillate. Bowlby said it's merciful and the way it does that is these very typical kinds of psychological defensive exclusion coping mechanisms that are listed on this slide are very typical ones and they are very useful in early grief and they might be useful throughout but if they get too much of a foothold, then they can actually slow things down and even bring the process of adapting to a standstill. So in thinking about this, I think that coping, and we tend to use coping and adapting interchangeably and that's not exactly wrong but I've learned that there's a way to see adapting as more about how we respond to change that's more permanent and coping is more of a short term thing which can be ongoing short term but it's how we deal with a stress or a threat that's kind of in our face. So what we really need to do when someone close dies is adapt to all the changes that occur and anyone who's lost someone and maybe many of the people in the room have know that there are, the world just changes, it's not the same, it's never the same again. So and to adapt, we have to learn to live with that loss and that really means not only kind of coming to terms with it cognitively or emotionally but also to really, for our minds to accept it at a level where our automatic expectations, our automatic thoughts, our automatic feelings and behaviors are now different. So and the most obvious way that happens is that we no longer kind of expect the person to walk through the door which anyone who's recently lost someone will tell you they do, it's just something we do, we have to live, we have to learn experientially to not have that expectation anymore. We can't kind of talk ourselves into it very well. So we have to accept that reality, the finality of the loss, the changed relationship we have with the person who died even though they're still, they're internalized, we have that ongoing working model that doesn't go away and then whatever other changes that we have and also ongoing grief, that I'm gonna be an old lady and still grieving as Rebecca said. So we have to come to terms with that. So we have to accept all of those realities, there's sort of no getting around those and also restore our own capacity to thrive which is undermined in so many ways when someone close dies and we came to view this through the lens of what's called self-determination theory which you may or may not be familiar with it. It was developed by two social psychology researchers named Edward Deitchie and Richard Ryan and they actually were working primarily in the education field but they've kind of made their way into a psychology more so I think than psychiatry but basically they came to believe that in order to thrive in the world, a person has to have a sense of autonomy, competence and relatedness and autonomy, by that what they mean is that we have to do things that we are intrinsically interested in or value. We have to do some things in our life that are meaningful to us. That's another, we have to have purpose and meaning, we have to have a sense of competence and we have to have a sense of mattering and belonging in the world and we, for a variety of reasons also somewhat empirically founded, made the assumption that that's what we do naturally if it doesn't get derailed. So and as we do that, as we start to accept the reality and restore our capacity to thrive, our experience of the loss changes and that's really what changes grief. So grief is transformed as we adapt and just as I was saying before, this is not only a learning like coming here and listening to me talk or whatever I'm doing, it's not only that, it's also experiential and so if we're gonna help people, we're going to have to help people experientially as well as just talking. So this is the model that we now use in our treatment and so we have this initial acute response that evolves and changes and quiets down basically as we adapt to the loss and we move from feeling that it's love with nowhere to go to feeling like love is the form, grief is the form that love takes and there are ways to facilitate this and that are listed here that happen naturally is another thing Rebecca said of course is that they had that astounding amount of love from there and support from their community after her son died which often happens but doesn't always and that can be one of the things that can get people off track. But it can also and mostly people get off track through persistence of the experiential and behavioral avoidance and basically counterfactual thinking, imagining alternative scenarios which are generally speaking either, they often have to do with what we call caregiver self-blame and various forms of that and social distancing is also something that is very natural, the Bowlby quote up there sort of illustrates that and then what happens then is those attachment if you're not coming to terms, if you're not really accepting the reality of the loss and you're not able to see a future with some promise in it, then you're left with these intense grief feelings and then the intense grief feelings lead to more defensive exclusion and you're kind of in a vicious cycle which is how we understand prolonged grief disorder from a clinical standpoint, this is what it looks like that people talk about a lot of difficulty regulating their thinking, blaming themselves, imagining alternative scenarios just over and over and over again and or again being unable to control emotions and therefore that's part of why people wanna be socially isolated because they don't wanna just break down in front of everybody all the time which is always a risk when you're in this kind of state and then also over time, people start to reinforce that feeling because they start to get impatient and or just sort of get a little bit more pushy about control yourself now, this has been long enough and they don't understand for the most part and then again, so then people resort to the avoidance behaviors and that happens both experientially, internally and also behavioral avoidance. So this is our infographic of what I've just been talking about and so this is what PGD looks like, it looks like just acute grief that doesn't stop being acute for years and years sometimes and that in a lot of prominence of that defensive coping, other distractions basically that and you know, like the if only kind of thinking but we make the assumption that this part of the equation is still there so that tells us that what we're gonna do is we're gonna sort of look for these and kind of help resolve them and we're also going to try to facilitate the adaptive processing. So what I'm saying is that prolonged grief disorder is not a completely different way of grieving, again I think we saw that with Rebecca but it occurs when the process of adapting is derailed and why does it get derailed? It's kind of a perfect storm of personal vulnerability, relationship characteristics, the circumstances of the death, the social and environmental context of the death and of the bereavement period also. So all of that comes together and typically in a person, we don't see people who get prolonged grief disorder over and over when they have multiple losses, they get it after a particular loss. Sometimes they'll have more than one, we have looked at this in our data but a lot of people have had multiple losses and only one has really gotten them into this place. So this is another slide showing the differences between continuing grief and prolonged grief. I just think it's an important point but I won't belabor it, we've talked about it I think enough, the other thing is that as Benjamin Sadek said, I think mostly in our profession people have and maybe still are kind of confusing it with depression and there's good reason for that, they often co-occur actually but also they have a lot of similar symptoms, there's a lot of sadness, there's this sort of guilty feelings, there's rumination, there's a lot of similarity in that way, there's suicidality in both but what's very different is the kind of laser focus of prolonged grief disorder on the loss itself, on the loss and the person who died is kind of central in all that happened. So and the same thing with PTSD, lately I've heard a lot more people saying well but why isn't this just PTSD and the fact is that it's really not, the symptoms bear more resemblance to PTSD than depression actually in the sense that it's something that happens after an event and there are intrusions of a sort and there are avoidance behaviors and there's the dysregulation that occurs like hyper arousal type dysregulation but it's really dealing with the permanent, it's the beginning of something when someone dies, it's the beginning of loss whereas an event, you know a PTSD event generally speaking, it's an event that a trauma is an event, it happens and then it's over, it affects us psychologically in an ongoing way but it's a very different kind of way, it affects us primarily with the fact that it's much more fear and anxiety based as we know whereas the primary emotions in grief are yearning and longing and sadness but yearning and longing is kind of at the core of it and the avoidance is there but it's very different in PGD than it is, it's not fear based and it's not event based, it's more reminders of the person and the fact that they're no longer here. One of the interesting things is that nightmares, we studied this also in a couple of, in our first study we studied this and nightmares were in I think 1% of the people we saw whereas nightmares are almost universal in PTSD. So do you guys have any, before we go on to the treatment, does this model make sense to you and I know we don't have a lot of time so but does anyone have any questions? I just wanted to pause and see if anyone has any questions or if you. My thoughts are that that's exactly what I was taught when I was a resident at Payne Whitney some number of years ago. And it's what I believed when I started this work. And it's not what we saw. We do see occasionally people who are, have an ambivalent relationship, describe an ambivalent relationship. Much, much more common is the relationship as, again, as Rebecca has told me, and as all the people you saw on the videos had said, they were very, very close to the person who died. And it was a very special and even relationship, if anything. So, yeah. But I know people do, you're not the only one who says that. And so I think it occurs in, but it just wasn't what we saw over and over. We've done now three studies, probably seen thousands of people, and very few of them have had ambivalent relationships, at least not by any way that we could tell. Even bringing, we do, one of the things we do in our treatment is we bring in someone else they're close to, and they also tell us, they were just really, really close. Yeah. Anybody else have any thoughts, or? Cardiovascular disease in particular I mean cardiovascular deaths are increased in the first month there's a there's epidemiologic studies yeah sorry I'm sorry so the question was it was more of a statement I would say but about the importance of physical changes I'm sorry I should have done that but thank you for asking yeah the importance of all kinds of physiologic changes which which are you know increasingly being subjected one of the good things about the diagnosis is that a lot a lot more people are studying it now a lot of young people are getting interested it's really great right well actually some there there are some if we if I can show you George Bonanno's studies I mean he's one of the people who's looked some it's physiology but there there's a there are some maybe we can talk yeah but there are there are some there is some data on physiologic changes but you're right there still needs to be a lot more and infants and children are another whole story right okay so so I'm going to go on then just just with a show of hands how many people in the room think they either already do or could identify a person with prolonged grief disorder right now okay that's that's pretty good that's great and if you can't you can always get in touch with us which I'm hopefully that's the last part of this is when I'm going to show you what we're doing now but so we as I mentioned developed a treatment targeting the process of adapting to loss and what's interfering with it because you know we don't think that grief is a problem itself grief itself is kind of the manifestation but it isn't something we want to treat itself so this is what someone recently called our butterfly model but this is what we did is we operationalized the the process of adapting to be lost focused and or restoration focused and this is this is what how we do the treatment as we walk through the operationalized components of adaptation so so basically at the center is understanding and accepting grief as opposed to making it go away or expecting it to go away so one of our most successful patients who I happen to you know who's been in in touch some people stay in touch over long periods of time and has done really well but ended the treatment with an this is someone who lost their son to a 13 year old son to cancer and was really basically shut down entirely four years after that when I met when I met met her and she had been through almost continuous psychotherapy with really good therapists in the community there was no question about that they just didn't really know about grief or how to treat it which is what we saw over and over but in any case at the end of that treatment she drove by the the school that her son had been going to and saw a number of his classmates and had a her grief level went skyrocketing but it didn't stay there and she as she says it didn't go you know she didn't she didn't go home and go to bed which she would have done before and so we don't expect grief to to go away then we also want people to start to see so we well I'll talk about this in a minute but so we wanted to start to see a promising future we want to strengthen their relationships we want to help them be able to narrate a story of the death that's the trauma side of it most people have a trauma like reaction to to the death itself so that means that the story that they can tell themselves or anybody else is very fragmented and doesn't make a lot of sense to them so we we want to help them be able to tell that story which of course the you know death is for all of us one of the most salient parts of our lives I think arguably so if you're going to think about someone you love you're gonna you're gonna sooner or later you're gonna remember that you know you're gonna have to think about their death really so we want to help people do that similarly reminders are you know are often very present in their lives and so we want to help them learn to live with those reminders and lastly we we at the end of our treatment is when we come back and help them sort of restore their sense of connection to the person who died so we use active listening is absolutely the centerpiece of this treatment we know that listening can be transformative that's true of all therapies right I mean we have to be good active listeners so it goes without saying and and and also just being able to tell your story to someone who actually wants to listen to it that's something that grievers often can't do because people around them don't want to hear about it anymore or they didn't they never wanted to really hear about it makes other people uncomfortable often enough and and so so being able to be a good listener and to make that really that safe haven kind of connection is very very important we use a lot of validation and support and we're also going to do some guidance but so we we're really helping people because you know one of the things we know about grief is that everyone grieves in their own way right actually everyone grieves every loss in a very unique way and so there's no cookie cutter for this but we do we do feel like the processes are ones that we can identify and help with so these are the the activities that we can call them press procedures or activities that promote experiential live learning so we start with grief monitoring so they're going to monitor their grief every single day throughout the whole treatment in a particular way that we do that and then we do something derived from motivational interviewing called aspirational goals work where we try to help people get in touch with what they do really care about and this is not you know often people are not very in touch with that sometimes they are surprisingly even with prolonged grief disorder but we we help them with that and we help them try to think of something of some kind of project that's a long-term project that they can start to make you know small steps whatever but start to make some orient themselves to and make some progress in and then we we as I mentioned we have a session with a visitor and we then move into a process very much like prolonged exposure for PTSD if you're familiar with that which we call imaginal revisiting and we shortened it and we think it has we now know that it has different a different a different mechanism of action than it does in in PTSD habituation or whatever I think there are other ways of thinking about that but changing the the anxiety around the emotionality around the thinking about the event is one of the main things they're trying to accomplish or we try to accomplish with prolonged exposure but here it's really it's how people learn to accept the reality of the death so they tell the story and then we also it's also a very good way to find some of those derailers because they tell the story for 10 minutes only so it's not prolonged and then they and then we talk to them we reflect on the story they just told and very often as they do that they will they will start to talk about something that has been getting in the way that they've been ruminating over and that we have an opportunity to address that and it can be in that context it can often be addressed very very effectively and in a pretty short time and then we do something that looks like in vivo exposure that we call situational revisiting which is we we make a higher we get people to make a hierarchy of the things that they're avoiding and and then start to do them very much like in like what you do in behavior therapies for and but again it's a very different kind of experience because these things that people are avoiding they're not anxiety provoking so much they just they're afraid of their grief actually and they're afraid of like confronting the reality of the loss which we're already helping them to do in other ways and they also have almost always some very positive memories embedded in them so that they can be when they finally start to do them many of these things are very kind of bittersweet but gratifying and then the last thing we do is a series of memories questionnaires and then finally and we invite people to have an imaginal conversation with the person who died so they they basically it's a little bit similar to the met what we call imaginal revisiting of the time of the death but now they're going to imagine they go back to that time again but they they they close their eyes and they speak to the person and then they take the person's role and answer and that turns out to be a really powerful that's the second most powerful thing in this treatment but it all kind of works together we sequence each session in this way we start with a loss focus then we move to a restoration focus and then ending we learned that the hard way when a patient early on we didn't do this with and after that they'd been dealing with the loss they left the therapist's office and went down to the lobby of the of the building we were working in and just laid out on the floor and cried so we realized that I mean maybe we should have known before but it's good idea to to sequence that and then we sequence the milestones that I was just showing you and I just showed you how we see sequence them as we start with talking about grief and trying to accept grief and not try to push it away or not try to certainly not be self-critical or judgmental about their grief which many people are and and we start to help them manage their emotion the emotions we talked to them about how they're going to do that and give them some tools if needed and then we we start to build the support for we you know for restoring the capacity to thrive by helping them to we do that aspirational goals work at the end of the first the second session which is very early on but we just introduce it and just talking about it is often kind of like it's kind of like an awakening of sorts for people who have really totally forgotten about themselves and so we when we do this in a very you know very simple and and not pushy way and then we bring someone in to the third session if we can then we move into a series of sessions where we tell the story of the death and then start to do that sort of in vivo exposure type living with reminders and then we and this is a 16 session model and I know that here's that here are the the ways that it's sort of organized I'm not getting into it in great detail but I don't know what time is it okay okay I'll show you one of the this is these are the people we saw earlier and I'll show you the first one of this and then I think well oh this is sorry no this is not this is a different video that I'm not going to show you because okay so this is our this is our data this is we had 641 people in three studies who so we did do the first study but we also did two subsequent studies one was with older adults where we saw people meet the mean age was 67 and they they were we had people up to 90 years old in this study and they were they had in a way the best outcomes of any of the groups that we studied but they all had almost identical outcomes and this is what they were so we compared this treatment to IPT which has a grief focus and it's it's really a very it's a very powerful and wonderful I think treatment for depression and then you know, the fact that this was better was kind of a little bit of a surprise in the beginning, but we knew that IPT wasn't working very well. That's kind of how I got involved in all this, because I was doing anxiety disorder research, so they thought maybe that would help. And I think it kind of did, but in any case, this was in the third study, we compared citalopram to placebo in people who were also getting this treatment or not. And putting it all together, the results, as I said, for all three studies were almost exactly the same, and roughly 70% of the people who got CGT or PGT, we now call it prolonged grief treatment because we had to change the name, and 70% of them and around 40% of the they were not exactly controls, they were people who had treatment for depression. What we did find about citalopram, though, which, well, first thing we found was that there was no difference in those who didn't get, who did not get CGT, there was no difference in citalopram or placebo in the grief. These are grief symptoms. And similarly, the ones that did get it did not benefit. We had predicted that they would do better if they were also on citalopram, and that didn't happen. And they didn't have a lower dropout rate. That was another thing we predicted. However, what we did find was that depressive symptoms, and this is another way they separate from grief symptoms, in this group, in the group that also got the treatment that we just talked about, they did significantly, the depressive symptoms got significantly better compared to just the placebo if they were also getting the grief treatment. So there is a good reason to use antidepressant medication in people who have co-occurring, comorbid depression with prolonged grief disorder, which is, in our studies, it was more than half of the group. So it's common. No difference between violent versus illness-related deaths. No difference between older adults and younger adults. And we did see a big effect on, there's a lot of suicidal thinking in prolonged grief disorder, and what you see here is, again, no difference between whether there's citalopram or placebo, and a pretty big difference for CGT. And then without the psychotherapy, you see much less improvement in suicidal ideation. So now I'm going to show you just one of the people. It finally dawned on me that just because I have family members who have died doesn't mean that he has forsaken me. So now I can go to church and feel free and feel as though I have a relationship with him. And one of the ways I can establish the relationship and keep it going is to read the Bible, which is something that was real important to my mom. The therapist helped me do some reality testing to help me get past the guilt feelings, like I could have done something, I should have done something to prevent her death. And while I knew that intellectually, she helped me get to the emotional core of it. And we relived that experience, I guess, for maybe three weeks. And finally it dawned on me, I really did all I could do. While that infected all areas of my life, I stopped being so reclusive. I got in touch with people from my past in New Jersey. I started making some plans professionally, I changed jobs, I did a lot of things that I never would have dreamed of doing before. And it finally dawned on me. So I want to just end by telling you a little bit about what we're doing now in our center. And I will skip some. I had a few videos to show you, but I'm not going to show those, but just so you have some idea. So the center was established, as it says, in 2013. We had a launch, which was interesting, but I was going to show you something about George Bonanno, who's a colleague who we, these are the center today. People that are, we're pretty small, I mean this is our core, these are our full-time people and everyone else works with us, but mostly as trainers or in some other way. And we are mostly digital, that other slide showed you that, and we have information for clinicians as well as people who are grieving. These are some of the things that we have, these are some of the ways that you can learn this treatment if you want to learn it. I mean, I think you can use it, you can use the principles of it. I believe that pretty strongly, but you, but we know that these particular procedures also do what they're supposed to do for most people. And we also sponsor webinars. These webinars are, we hold them monthly and they're then available on our website. As you can see here, we have people, a lot of people in the grief field and related fields are, you know, present and it's a really nice resource for grief information if you're interested. We also have resources, these are resources for patients if you want, not everything, we didn't really talk about all of this, but these are some of the things that you can download from the site. And we also have a description of the treatment and how it's different from, you know, pretty much what I just, what I just talked to you about in a fairly brief way. This is another, a couple of more testimonials, this is just a nice testimonial, it's on our website also. This one is not on our website, this is someone who wrote to me maybe three or four years ago, more than 10 years after I treated her, and she's basically saying, you know, she tells a little story about having gone back to the, she's living out of town from where her baby died, this was a baby that died, and her children know about the baby and they're, you know, it's just a nice story and she's saying more than 10 years later the treatment did continue to empower her, is how she put it. This is, if you're interested, this is the history, we also have on our website this history of our center, and you can download papers directly from it if you want, each one of these, you know, where it says something like you can have more or something, anyway, if you do that, you can, there are PDFs that you can download if you're interested. And this is what we've done so far, we've trained, so I went to the School of Social Work, by the way, because Myrna Weissman had just published a paper showing that the huge majority of psychotherapy that's done in our country is done by social workers, and Columbia School of Social Work is a huge school of social work, we have, we now, at the time I went, I think we had 600 students in the school at one time, now we have 1,000, and so there's a lot of opportunity to influence people, I really at the time wanted to do that for all evidence-based treatments, but, and we've had some success in that, but anyway, so over 800 master's level students have taken a course in this treatment, we've done dozens of off-site workshops where we don't have the exact numbers, but we have done workshops in 28 other countries, and I know that there is, there's ongoing training going on in many of them, we don't have data, I'm gonna show you some data from one of the recent ones, which is interesting, we've sold over 3,000 treatment manuals, we have a video self-study with the patient that, going through the whole treatment of the patient, we've sold over 1,000 of those, and we just launched, about nine months ago, an asynchronous tutorial where you can, it's a tutorial, you can learn the treatment online if you want, and we now also have a full video role-play of a treatment, so you can learn it if you want. So Barney, Barney Dunn is a colleague in the UK, and they've just, so we've now started to work in the National Health Service in the UK, and this is some data that they've been collecting, they trained 14 therapists, we helped them train 14 therapists, and they've so far treated 91 clients who also had to score, they scored on the brief grief questionnaire, which is a very short questionnaire that you can use for screening and maybe for outcome, they've been using it for outcome, and it seems to be effective. They had to, these people couldn't get into the health service without scoring above a threshold on anxiety and or depression scales, so they had, so they were measuring that, and not all of them completed the brief grief questionnaire, but the ones that did showed very positive outcomes, so the clinical responses for depression and anxiety actually exceeded their cut, whatever their standards are, and then 79% of the ones that they treated that they had data on for grief, they were all treated with the treatment I just showed you. So I guess that's, and, okay, so, and then the other, we've been doing a lot of work in the Harlem community since, really since, well, for a long time, but since COVID especially, and Dr. Henry Willis is a newly minted PhD who now has a job at the University of Maryland, as you see here, and he's still working with us as our DEI curriculum development person, and we've been working, he's been working with a couple of other people to put this into group form in a really interesting clinic in Harlem, which is connected with the First Corinthian Baptist Church, and again, this is what they did, and these are, they also have promising findings and positive feedback from participants, so I'm going to stop here. If you want to learn more, I'll leave this up here, but you can go to our website, but I want to give you a chance to ask at least a few questions. So anybody have any questions, or, yeah? Thank you. I have a question about post-loss stress disorder as a term, and whether there's any momentum towards adopting it. So why, why post-loss stress disorder? Or whether there's any, I think some people have some issues with prolonged sleep. Yes. So I'm wondering, because I know you talked about that. Yeah, I mean, I was going to talk more about it than trying to cut myself short. Yes, so I personally, I think we should have named this post-loss stress disorder, which is a name that Naomi Simon proposed in, I think, 2004 or something, there's a paper that she wrote, and I think it is really a post-loss stress disorder. As I mentioned along the way, the symptoms bear a lot of resemblance to PTSD, but they are different. And I think it would make it clearer that we're not talking about Rebecca Shiner and people like her if we didn't call it prolonged grief disorder. Because it's very confusing, I think, and it doesn't do anybody any good, and it creates a lot of not great feelings and grievers sometimes that is not what we're trying to do at all. So yes, I think post-loss stress disorder, and I think we can still keep tweaking the criteria, too. I don't think we really have nailed the criteria, but we're close enough. I didn't think anyone was before me. Yeah, it's not good. Interesting. Well, how do you like post-loss stress disorder? It's not too bad, right? Okay, let me know. I kind of like it better than complicated grief because I think all grief is also complicated, so you know. Yeah, I see, so you might want to put that, yeah. Right, well, thanks and thanks for the... So, when we started this work, the kind of general agreement in the field was six months, and that is what the ICD-11 says, that you have to be bereaved for at least six months. They don't say a year. I mean, there's no data one way or the other for that particular part of it. And so, all of our studies included people that were six months or more out, and there was no difference in their outcome. So, yeah, and I've heard anecdotes when I give workshops occasionally. People will tell me that they had some kind of, they had a treatment that was informed by this approach at even as early as a couple of months out. So, I think it can be helpful. Yes, we do have comorbidities from lifetime comorbidity and lifetime mood and anxiety disorders are elevated in our sample, but also that's been found universally in the work that's been done here, as well as anxious attachment is a risk factor, you know, a history of early childhood abuse or difficulties is definitely a risk factor, but it isn't causative per se, but yes, that's what I was saying earlier on, I know I had to talk a little fast, but the idea of a perfect storm, it is partly person related, but I think it's important to realize that a lot of this is also, a lot of this syndrome is also influenced by the social environment, maybe especially, but maybe all of our, all the conditions that we treat are, so the social environment and the way that the event that happened, how it happened, who was there when it happened, you know, how they behaved and all kinds of things like that. I think everyone, lots of people agree with you about that, but as far as I know, there's never been a study of that. And the other thing that a lot of people thought or maybe think is that funerals can be very helpful, too. And there is a little bit of data about that from the Netherlands, again, and they actually, surprisingly, did not find an effect of funerals. So I don't know. I mean, I think, you know, and just anecdotally, I do think religious rituals and religious, any kind of clear expectation that with a lot of support around it makes a lot of sense and could be very helpful, but sometimes people are in a religious situation like that where they don't feel supported, where they don't really buy into it, or they feel a little estranged from it, and that, then it doesn't help. And one more just anecdote is that I treated a person of color who was quite religious and got lots of support from her religion who lost her son, and she told me that her spiritual side had no problem with her son's death. It was her fleshly side that was suffering. And so, you know, it didn't help, I mean, in that sense. And it's, again, Rebecca talks about it almost being biologically programmed. I mean, the body sort of reacts in this profound way. Absolutely, yes, and yeah, you know, Sid and I wrote that section, did you know that? Anyway, yeah, no, it's a great point, and what surprised me about the depression story was that, I mean, if you're, you know, they seemed to be happy with, what was it, three months before that, it was a three-month bereavement exclusion before that, and grief is not over in three months, so, I mean, if you're worried about it, you have to worry about it more broadly. So I think the decision that you made was an excellent one, and, you know, I think there's, it's complicated because there are trade issues in all of this, too, that come into play. And, you know, feel like they've been, you know, like they had, they have the grief field covered, but they really didn't because this, anyway. So thank you all. I think we are over time.

Kathy Scheer

Excellence in Research Award

anxiety disorders

depression

grief

Columbia University

clinical research

panic disorder

obsessive-compulsive disorder

prolonged grief disorder

DSM-5TR

interpersonal psychotherapy