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Take Note: Katie Kostohryz on prolonged grief disorder

Head shot of Katie Kostorhyz
Katie Kostorhyz is an associate teaching professor in counselor education and rehabilitation at Penn State.

Prolonged grief disorder, or PGD, is now a diagnosable medical condition. Is this a win for grieving people yearning to be taken seriously by practitioners and employers or is it a way to pathologize — and even profit from — a normal human experience? Katie Kostohryz, an associate teaching professor in counselor education and rehabilitation at Penn State, talked with WPSU’s Lindsey Whissel Fenton about what PGD is, about the pros and cons of this diagnosis, and about what this all means for grieving people.

Resources with information about prolonged grief disorder include WebMD: What Is Prolonged Grief Disorder? and American Psychological Association: Prolonged Grief Disorder: Diagnostic, Assessment, and Treatment Considerations.

Here’s the conversation with Katie Kostohryz:

Lindsey Whissel Fenton: Welcome to Take Note. For WPSU, from my home studio, I'm Lindsey Whissel Fenton. The Diagnostic and Statistical Manual of Mental Disorders, more commonly known as the DSM, is the handbook used by healthcare professionals as the authoritative guide on the diagnosis of mental disorders. In March 2022, a new disorder was added to the DSM: prolonged grief disorder, also known as PGD. PGD, is described as a longer lasting and more disruptive form of grief that extends beyond a year after a death or loss for adults and beyond six months for children. Dr. Katie Kostohryz is an associate teaching professor in Counselor Education and Rehabilitation at Penn State and is a licensed professional counselor. She also currently serves as the Herr clinic supervisor in the State College Area School District will talk with her about what exactly PGD is, about the controversy around this diagnosis, and about what this all means for grieving people. Katie, welcome to Take Note.

Katie Kostohryz: Thanks, thanks for having me here.

Lindsey Whissel Fenton: Let's first start with establishing what is grief, like “normal” —and I'm using air quotes here —like, “normal” grief.

Katie Kostohryz: Right? And I think that's the kind of million dollar question we're here today to talk about is there's a lot of different definitions of grief. I, particularly, really like one that I use from Counseling Strategies for Grief and Loss by Humphrey. So ,you gotta think, when you think of grief, you have to also think of loss, which is, you know, the real or perceived deprivation of something or someone deems meaningful. So, we're talking about here and prolonged grief disorder, they're defining that as the death loss of someone close to you. And then grief is a response or experience to a loss. And it's very multi-dimensional. It can be emotional, interpersonal, cognitive, physical, behavioral, social, cultural, spiritual, historical. So, that's how we respond to a loss. And so, it looks really differently and there's a lot of factors that go into play of how one grieves. And we know that grief is universal, but it's very unique in in our response, so it's, “Am I doing grief wrong? How long is too long? Is there something wrong with me?” You know, “What's pathological? What's this natural human response and experience versus not? When does it…” and I think this disorder tries to focus on the impairment of functioning. And so, then when is it helpful to get additional support? And then what type of support is that? But it's a great I mean, it's interesting conversations I've had with colleagues about this, what's normal grief, what's not? And then, even friends, family members are coming up and asking, you know, “Hey, I heard about this, and what does that mean about me and my grief?” And so, I think it's, it's, it's very complex.

Lindsey Whissel Fenton: As you've touched on, grief inherently is very complex and unique. And there's all of these factors. And then I think to, to further confuse us, now there is this new diagnosis in the DSM-5 of prolonged grief disorder or PGD. In a nutshell, what is prolonged grief disorder?

Katie Kostohryz: So, according to the DSM-5-TR, which is the text revision, in summary, and the APA talks about this is a form of grief that is persistent, pervasive and interferes with functioning. And, research is limited on this, right? So, it's a new diagnosis. Like, there's a history of, you know, it was as something to be considered, but not considered a mental disorder, right? Because the DSM classifies mental disorders, it's a range between four and 10%, they're saying, of people who are grieving, someone in their life could be diagnosed with prolonged grief disorder. And so, it's basically looking at functional impairment that exceeds their cultural, social religious norms that it is, so there's several criteria. Um, so does that mean that people feeling grief shouldn't be over their grief in a year, right? That's not what the diagnosis is or what people are trying to say. However, it's been interpreted these ways which I can understand how that might be. It's the impairment may be severe and that they need some additional support, to help them as they continue to grieve and also engage in every day, day to day kind of tasks and functions.

Lindsey Whissel Fenton: And, we are going to unpack some of those criteria a little bit more like the cultural norms, the impaired functioning, the pervasiveness, but first, why is the addition of this diagnosis of prolonged grief disorder as a recognized diagnosable condition controversial?

Katie Kostohryz: Yes, so, well, there's many different things. Well, the DSM is controversial in and of itself, right? Of like, who decides, right? Like, who's at the table deciding that these are mental disorders right and through the history? We have it… there's so the DSM is, you know, not just using the United States, but also worldwide. There's also the International Classification of Disease, which actually put in prolonged grief disorder in 2018. And so, the DSM is also paired with ICD-10, even though the eleventh version is out there now, for reimbursement purposes, as a way to tracking different diseases, mortality rates at the ICD level. So, it's controversial, the whole diagnosing of who decides this, right? What's reimbursable, what's not, the stigma that surrounds this. As it relates to prolonged grief disorder, even the title, right? Prolonged grief disorder, you know, my class was like, “It's called life, right?” Or grief, like, by saying it's like prolonged grief, it's saying you're not doing it right. And then people can say, “Well, what's wrong with me?” Which is part of the challenge, when you diagnosed is? How is the diagnosis being communicated to clients? How has it been trained to clinicians? And then how was that diagnosis used? And then also people self-diagnosed or Googling it? Right? So, some people, random people that have talked to me about it, you know, not, not clients, not students, not colleagues, friends are like, “Well, I read this about this, or I have this or I have this.” And that can be really damaging at times to say, “Well, I'm doing this wrong, or there's something wrong with me, it's pathological.”

Lindsey Whissel Fenton: I have a disorder.

Katie Kostohryz: I have a disorder, right? There's something wrong with me. And so that stigma of diagnosis sometimes can be even more harmful than the diagnosis itself. And so, these are just like general things, any type of diagnosis, when you look at the DSM, has these and then now especially with grief, it's really fired up some, I mean, in one of I would say the benefits of this is that we're having discussions about it. That's my hope for coming here today. And then also moving forward is to have these conversations and then make these shifts and, you know, influence or do the research, or also get to the tables where decisions are being made of how we're using these diagnosis, which is challenging, right? So, as the counseling profession we can diagnose with the DSM, but we're not part of the revision steering committee that decides what's in there, and what's not in there. And so that's problematic.

Lindsey Whissel Fenton: Before we get into kind of more of those arguments, and in talking more about the process, can you give us a little bit of history about how did we get to this place where ultimately prolonged grief disorder is now included as a as a condition?

Katie Kostohryz: Yeah, so, there was like, chronic complex grief, and there's all these different titles names. But in the DSM-4, which came out in 2013, there was an exclusion from major depression; if you had suffered a close death in two months. So, then that meant that you wouldn't be diagnosed with major depression. So, there was like trying to say, well, what, what's the relationship between depression and grief? So, there was debate about that there wasn't a lot of research about that. And it was also put in as a V code, which is conditions to be focused on clinical attention but weren't seen as mental disorders. And so ,bereavement was a V code. So, it was noted in the diagnosis, but that is where now it's shifted to actually being a diagnosis. And so it was voted in in 2020. And then it was added in in the March of 2022 to actually be its own distinct thing, not just as a piece of major depression.

Lindsey Whissel Fenton: So, you mentioned depression a couple of times; Is PGD just another way to say that a loss jolted someone into depression?

Katie Kostohryz: I think maybe when we talk about the details, it's easy to do that. It's not saying that there aren’t overlap. And it's saying that sadness is often a response to a loss. But there's they're showing some differences in terms of the criteria. So, there is some overlap there. Same with, like, PTSD. But then there are some distinctive features between those. And it's not related to the loss, like there are other impacts in depression, as it relates to mood and as it relates to thinking and feelings about self and others, that is not just focused on the loss. So, the criteria is really different when you look at them in detail.

Lindsey Whissel Fenton: Just to clarify, for prolonged grief disorder, does the loss have to be death related?

Katie Kostohryz: It does. So, it has to be death related. Yes. And someone who is close to the bereaved individual, right? So, the death is at least 12 months ago, of a person who was close to the bereaved individual. Now for children, adolescents, they have six months. Also, for the ICD International Classification diseases, they have six months. So, there's, again mixed research of how and why people have decided this right. And I think one of the benefits to that the DSM will say is, “Well, now we can do more research on it. Now we have the language we have the criteria, we can figure out what are best practices to support people.” And it's also how people can get reimbursed for services. But then my class was saying they were like, “Well, what about the first 12 months you need support then but it's not is not reimbursable then.” It's, you know, so that I can then… that's the flip side.

Lindsey Whissel Fenton: You've mentioned the timeframe of the criteria. And again, we'll just restate, it's saying that this impairing grief lasts more than a year and adults more than six months and children. But many grieving people share that what they experienced the first year after loss is actually more of a feeling of shock and that their grief doesn't even fully hit them until the second year after a loss. I've heard a lot of people say the second year was actually worse than the first. So where does that leave us with if that's being, you know, anecdotally communicated as part of the, you know, again, air quotes, “normal” grief experience, but now it is interwoven in this criteria for a disorder diagnosis?

Katie Kostohryz: Yes. And I think that timeline of grief is a big sticking point for many people of, you know, your two year three sometimes are the most challenging ones, right? You're trying to survive in that first year. You're just like, “What is going on?” Right? And, and so it does it. And there's other criteria that the DSM put in place to say, okay, it's not just that, right? And also, you know, it stated like, it doesn't mean you should stop grieving after a year, if the grief exceeds your cultural, societal religious norms, and is impacting you and met in multiple different domains. So, at home at work in your other roles, so those were their criteria have to saying that, but yeah, it is, it is, it's challenging to say that, and it's, you know, people are really struggling with that.

Lindsey Whissel Fenton: You mentioned, the cultural norms being a part of this diagnosis, too. And that's one of the other critiques that will come up around prolonged grief disorder is it is described as being, an I'm quoting, “the duration of a person's bereavement exceeds expected social, cultural or religious norms.” Our culture is pretty uncomfortable with grief. So, are our societal norms, really the best measure of whether or not someone's grief is considered healthy?

Katie Kostohryz: Right, and the DSM is a social, cultural creation. And it is saying, I read after a year, let's look at this. So, I mean, it's kind of in and of itself. And I think that is the challenge of this. And so, I don't know, well, the future versions of this change, will it say, three months after a person has died, right? Because then will research show that will there'll be enough backlash or enough people who are working in the field, you know, mostly the medical aspects or at the steering committees and task force to say, okay, so this isn't, this actually isn't accurate, from the data that they've gathered the last couple of years and moving forward.

Lindsey Whissel Fenton: If you're just joining us, this is Take Note on WPSU. I'm Lindsey Whissel Fenton and our guest is Dr. Katie Kostohryz, a licensed professional counselor, and an associate teaching professor and counselor education and rehabilitation at Penn State, we're talking about the addition of prolonged grief disorder to the DSM-5, and about what it means for grieving people. Let's shift gears a bit and talk about what some of the supporters have to say about the inclusion of PGD in the DSM, what are some of the cases that have been made to support its inclusion?

Katie Kostohryz: One of the one, you know, one of the main ones is to get more research out there? Like, how do we support people that are really rstruggling in a significant way? And so, once we have more of this criteria that that individuals can be diagnosed, now this is the pros to it, then we can do more research that says, okay, this person with these criteria that have met, this is working, not working, right? This is a way best practices or treatment or evidence base to help support people in their grief. So, that's a big one is like, what are interventions? what are best practices? How can we support people, right? It's a common language so professional, so we're having a conversation about it, we can talk to clients about it. This exists whether this diagnosis has been here or not. We are we as a society, we do pathologize or ignore grief, or what's what we think is normal versus not normal, healthy versus not we, we have this hierarchy of what we view as, you know, more important, less import. So, it exists without that. So, it's, it's already there. This is then saying, Well, we're calling it you know, XYand Z. So, it's just a microcosm of this the society that we live in. So, it's I mean, that's the ultimate goal is to save for best practices, treatment to support people that are struggling in these areas, you know, social, occupational, or other functioning at home, all of these things. So that's the ultimate goal of this diagnosis.

Lindsey Whissel Fenton: Right now, especially as it's just starting to evolve, how is PGD treated?

Katie Kostohryz: Yeah, so there are so what they have what the research has shown that has been helpful so far, with those that have met the criteria. Cognitive Behavioral Therapy is effective in reducing in symptoms, there's also a 16-week complicated grief treatment that came from Columbia University that uses some CBT also has some attachment pieces in their psychoeducational pieces. It also has this like dual like, loss restoration kind of adaptation model and there, and then how to kind of, like the sense of connection and satisfaction in the world. And kind of this continued this idea of continued bonds with those that have lost, right? So, living with reminders, connecting to memories, and then connecting to others through telling the story of the death, how to manage your emotions, pains. And so those are the two mostly and then bereavement support groups, we know groups are really impactful. But there's, I think, a lot of different types of groups that individuals will join. So sometimes research can be more challenging with that, depending, and there's no medication specifically for symptoms of grief, although oftentimes, you'll see people will be diagnosed with those that people diagnosed for depression or other, you know, variety of different ones.

Lindsey Whissel Fenton: Well, on that, that medication question is another point of controversy. Depending on how likely it is that there will be some sort of pharmaceutical intervention, on one hand, it could be a good thing to ensure that people who need the medication are able to get it or, you know, there is a way to classify that on the other, you know, there's arguments that it could lead to the risk of people who are grieving, but otherwise, you know, mentally healthy being prescribed an unnecessary medication. So, how is that challenge managed?

Katie Kostohryz: Yes, and I think that's where we are now is trying to figure out how to how to manage that. Because they do show and it's interesting, some research was showing like that, in a depression in combination with CBT can improve this depression symptoms with someone, but they have limited effects on grief specific symptoms. There is no medication, to make your loved one come back to make the grief go away, right, to make this. Now, it doesn't mean like we said, like some people who researchers said that they have diagnosed or say with PGD has had an existence before the deaths, some depression or mood disorders or anxiety, so forth. So, some of that that may be undiagnosed before could be helpful in some of these other aspects, right? But there is no like grief medication. You don't want to numb that part either, right? So, it's like, how do you grieve this loss, and then also, how do you stay connected to this individual and engage in life in a way that's meaningful and have times when you just can't; it's too much. And so, the medication is, has always been, you know, a pretty hot debate of like, who decides? What are the studies out there? Right? Are we over-medicating people? Right? And what are the side effects, long term impacts of that? And who's, who's pushing that agenda is part of this as well? And how do we cure grief? I mean, it sounds like a Black Mirror episode on Netflix, right? Like, they've got, you know, this sci-fi thing of like, what are we going to do moving forward with this, you know, and also not to minimize or undermine people that that medication could really help them with, you know, coexisting challenges or mental health, that are really been exasperated because of this death. And so that's important to consider too, right? And so, medication can be really stabilizing helpful for people. And so, and I think the fear is over diagnosing and using medication when it's not appropriate.

Lindsey Whissel Fenton: You teach counseling education; how much training on grief in general do counselors and therapists and mental health care providers typically receive?

Katie Kostohryz: Because it's not part of our curriculum, like core accreditation standards, like, I'm actually on this grief competencies taskforce within the American Counseling Association. So, there's a group of us that were trying to advocate and say, “We need to have grief competencies in our in our standards for the crediting process to make sure each of the program does that.” And we're trying to advocate for this to say it's important, because and research will show this on counselor education programs. It's taught only when there's a faculty member that's interested in the topic. And so, it's not a required class. And it's only an elective. So, I mean, I think our program here at Penn State, you know, we work really well together. And I was actually just talking to my colleague, Elizabeth Mercer who teaches the diagnosis class. And so, her and I were talking because she talked about this diagnosis in class. And, actually, most of the students had that class before they had my class. And so we do a good job talking about I also go into other classes and I'll do like an hour talk about, hey, I'm biased, but I think all of counseling is a form of grief and loss. Here's some death and non-death related counseling. Here's some things to think about. All these cultural identities, factors, marginalized populations disenfranchised grief, a variety of responses to Brief. And here's some different things to think about as you're moving forward. So, it's really dependent on the programs, but it's not a requirement. And so I think with this diagnosis, one of the benefits to me is that we're going to have to talk about it more, we need to have more of these discussions, people need to have more training about it, and to ask these detailed questions to see how is this impacting you and your life? And what are your strengths? What are some of the strengths? What are some things that how is your culture really enhancing your resiliency? Right? And I think that's the flip side, we're not really talking about is like, how is this diagnosis? And like, pathologizing it? And then also, what's the conversation of like, how are people like, you know, grieving and also, you know, able to engage and work through their grief and have these moments and re-engage and engage and do what they need to do to take care of themselves and, and still wish that their loved one was back? That's, that's natural. That's normal,

Lindsey Whissel Fenton: Once added to the DSM, is a condition pretty much there to stay? Or, is it possible that we could see PGD removed from future editions?

Katie Kostohryz: Yeah, so, it's not nothing's permanent in there. And as we've seen over time, like some of their diagnosis that they would have, we're not we're very, like, you know, homophobic, sexist, I mean, racist. I mean, they were not considered of these different factors. So, the DSM five came out in what 2013, and this came out and, you know, every 1015 years kind of depends, there are changes in it. And so yeah, I mean, that absolutely is always a possibility. So, it will be interesting to see how it will morph and evolve over the next 10, 15 years.

Lindsey Whissel Fenton: What if someone isn't sure where they fit in terms of prolonged grief disorder? Or on their kind of grief spectrum? How can they raise this question with their health care providers?

Katie Kostohryz: Yeah, and I think I think just having that conversation of saying, “What do you know about this,” right? “Here's what I'm, I'm reading an article on it, like, tell me, you know, what do you know,” and hopefully, with individuals who are going through loss and grief, they have a rapport with their clinician. And so, having that discussion, talking about it, hopefully with a provider who has an understanding of who they are, right, and knowing them kind of before the grief too, right? That's, that's part of it, too, is like, what was your life like? What is it now? And how do we combine these two of what it is now what it was? And what, what can we do? What do you want to do? You know, as you move forward in life, do you want to move forward in life? And what would that look like? And also, how do you stay connected with those memories of your loved one? And so I think it's also talking to your healthcare provider about where you're struggling? Where times when you're like, “Okay, I can do these times when it's really difficult.” And like I said, is it at work? Is it at home? Is that sleeping at night? Is it? I feel like I should be somewhere that I'm not right? And is that coming from our society? or social media? What are you seen on there? And you know, really, like taking, you know, asking the questions and being curious about yourself, and then also asking your healthcare provider, like, what do they know about it?

Lindsey Whissel Fenton: And, let's say someone is interested in either talking with a therapist, or just getting some support for their grief experience, but they don't have an official diagnosis of any kind, what avenues might be available to them?

Katie Kostohryz: Yeah, and I think knowing like in your community. Like so in State College here, too, right, there's a lot of like TIDES, the Jana Marie Foundation, Koch Funeral Home, they have a spiritual director there that does a lot of like, she does this walk in grief. And so, these programs in the community where you can walk in and talk about your grief, or they have support groups, for someone who just lost someone who's caregiving TIDES to support groups, you know, on Thursdays here in town, so it's really like knowing your community, I think, is really important. So, and asking your healthcare provider, or asking friends or family that you know, and trying to get plugged into that network where there are supports. And if there aren't supports, I think there's some online supports as well. And I think a lot of organizations have started because of what's not available, what's not there. And so how do you start and connecting to others who are grieving, we know that that's can be really helpful.

Lindsey Whissel Fenton: We started our conversation talking about some of the controversy around this one of which being that people who are grieving can now have an added layer of, “Oh, great, now I'm doing my grief wrong, or now I have a disorder.” So, to bring it full circle, what message would you give to someone listening who had that reaction? Who, you know, who's thinking, “Wonderful; another thing that now I have to feel bad about on top of my grief experience”?

Katie Kostohryz: Yeah, I would say let that go. Right? Like that's and that's easier said than done, right? And I think we to have the conversation about how grief is socially constructed, really helps us understand like, how did we view grief growing up, right? How was it modeled to us? Or how was it not? How did we learn first learn about what are our previous losses? Because we think about our response and our grief. It's like, we've had a lot of non-death related losses in our life that we don't necessarily See that we've been grieving. So it's impacted by our past. But I think it's being curious about it, and not being really hard on ourselves. And then there's also other factors going on people's lives that could make some of the grief more intense at different times, other transitions, maybe like going towards retirement yourself, aging parents kids transition out of the home, if other losses are going on, it might feel a little bit more challenging for you as well. And that makes sense. And there's nothing wrong with you, right? This is the natural response to losing someone. But I think too, like we look at like the criteria for the prolonged grief disorder, I think that there's really this, like, clinically significant degree is heard over and over again, and again, clinically significant by your clinician, like assessing that what that looks like. But it's important to see that, that that's a part of this diagnosis. It's not saying that you can't still grieve, it's not saying you're not going to feel these things, right? Yeah, you're gonna have disbelief that the person has died, you might have intense emotional pain, you might feel numb, some days, you might feel like life is meaningless. You might be lonely, and it's okay to feel those things. And there's nothing wrong with you, if you feel those and I think this diagnosis thing, but is it every day where I'm not able to work, I'm not able to socially connect with others myself, right? That it's really impacting my daily functioning, then that's where this diagnosis says, “Okay, then let's talk about this.” Like, “Let's look at some, let's really dive into this a little bit more.” So, I think it's like, if we can reframe it, like, “Welcome.” And let's welcome the conversation about grief. It's very, I mean, I have mixed feelings about it too, right? So, it's like, I'm trying to be the pros and cons. But, you know, let's talk about it. And then let's talk about times when, when it's not overwhelming you; you're not drowning in grief, what does that look like? What are those times? Who are you around? Right? What are you doing for yourself? How can, how are you staying well in your grief? I think all these things are really important for us to think about and, and also for people, when they're thinking about themselves in their own grief. It's okay to feel these things, you know, and it's okay to ask for help or to get a group or to go to a counselor, you know, I've gone to a counselor myself.

Lindsey Whissel Fenton: Thank you for normalizing that you've gone to a counselor. In the effort of normalizing that, I'll to say that I, you know, my therapist is very important in my life. So, I think lastly, I'll just say what I heard in that to kind of summarize is, we are dealing with our own grief experience, if someone is dealing with their own grief and struggling with the news of this new diagnosis is the two things I heard from you that really stood out were sort of self-compassion and curiosity.

Katie Kostohryz: Yeah, yes. Yeah. Absolutely. And taking care of ourselves and, and being kind to ourselves in a really difficult time. Right. And it is it is, and yeah, I would say those are two great key points to take away. And I'll remind myself of that, too.

Lindsey Whissel Fenton: Dr. Katie Kostohryz, thank you for talking with us.

Katie Kostohryz: Yes, anytime.

Lindsey Whissel Fenton: Dr. Katie Kostohryz is an associate teaching professor in Counselor Education and Rehabilitation at Penn State. To learn more about prolonged grief disorder, visit wpsu-dot-org-slash-take-note. From my home studio, I'm Lindsey Whissel Fenton, WPSU

Lindsey Whissel Fenton is an Emmy award-winning filmmaker, international speaker, outreach strategist, learning designer, and grief educator. In her current role as a senior producer and director at PBS/NPR affiliate WPSU, Fenton focuses on projects related to grief, trauma, and mental health. She is the creator of Speaking Grief and the producer and host of The Apologies Podcast. An international speaker on grief awareness and digital outreach and education, Fenton delivered a keynote at the 44th ADEC Conference and has presented to a variety of organizations, including the National Educational Telecommunications Association (NETA), American Public Television (APT), the PBS Annual Meeting, and Comic Con San Diego, among others. Fenton earned her bachelor’s degree in Cinema and Digital Arts from Point Park University and her master’s degree in Learning, Design, and Technology from Penn State. She is a dog-mom, an avid consumer of books and podcasts, and a rock climber.
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