In March 2022, a new grief-related disorder was officially adopted into mainstream mental health diagnosis nomenclature. Prolonged Grief Disorder (PGD) is a recent addition to the Diagnostic and Statistical Manual fifth edition text revision (DSM-5-TR). A PGD diagnosis is to be used when a person is grieving too long and too intensely.

In this interview, Kaori Wada, Psychologist, grief researcher, and Associate Professor and Director of Training at the University of Calgary, builds upon her recent paper on the Medicalization of Grief in conversation with MIA Science News Writer and Psychologist Zenobia Morrill. Wada articulates a history of institutional tensions and financial conflicts behind the creation of this new PGD diagnosis. She also discusses the ways PGD could shape how we collectively understand and respond to those grieving.

Wada’s work demonstrates that the creation of PGD was not based on scientific findings but appears to be entangled in long-standing arguments between camps of mental health professionals with different stakes in whether the diagnosis became legitimized. Further, PGD, as with other diagnoses, represents elements of mainstream psychological theory that tend to render deviations from Western cultural norms as “unhealthy.” Is diagnosis needed to provide support and care? If so, those most likely to experience marginalization, violence, and unjust loss are also most likely to be classified as having PGD, a mental illness.

At a time when the world is fraught with tragic loss—owing to causes ranging from political failures, state violence, and the COVID-19 pandemic—grieving has been transformed into a mental health disorder. But the complicated question of what a mental disorder is continues to be glossed over. The opportunity for psychiatric professionals to embrace humility seems to have reverted to the familiar “diagnose-and-treat” response. Will pharmacological intervention become the dominant “treat” response to a diagnosis of PGD?

A new grief disorder is a clear departure, however, from the way grief used to be described in the field as an example of something that is clearly not a mental health disorder, Wada shared. She exclaims: “To me, the medicalization of grief is controversial because it may fundamentally shake up the concept of a mental disorder, [how it has] been defined and understood.”

Wada and Morrill explore what this new PGD diagnosis may mean, reflecting on the ways the “diagnose-and-treat” logic seems to medicalize experiences formerly considered part of the experience of being human. The need to pathologize experiences in order to address them represents a paradox. A new ethical and moral quandary befalls professionals tasked with determining when grief is an illness and when expressions of grief are inappropriate.

Will the public embrace this new disorder? Will the medicalization of grief be resisted? Will a pandemic of PGD diagnoses follow a global pandemic? Wada speaks to the personal and professional influences that shaped these curiosities and her approach to researching how grief is being construed in the mental health field.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Zenobia Morrill: Your work drew my attention to the major and recent developments and changes in how grief is being defined in the mental health field. Could you tell us what led you to research the ways grief is being construed? Have you always been interested in this topic?

Kaori Wada: Thank you. I’m from Japan, and my interest in grief dates back to growing up in Japan and experiencing multiple losses. After high school, I came to Canada as an international student, and I got involved in grief support groups and grief camps for children, and around that time, I started to study psychology. In my psychology courses, what I was learning, some of the concepts that I was learning—things like self-esteem just didn’t quite fit well with me. And that was the same for grief as well. In Western models of the theory of grief, there’s this image that grief is a linear process, so people go through stages, perform certain tasks to complete, and eventually get over it and move on with their life.

I don’t want to paint a simplistic picture of western theories and models because each of them has some important nuances. But in general, I think those models reinforce this idea of grief as a very linear process, whether or not that is intended, right? Also, there’s this notion that continuing bonds—or internal conversation or relationships with the dead—is something that’s not healthy. As someone who grew up in Japan, I felt some dissonance with that way of thinking about death and grief. And that led me to write a term paper, in one of my graduate courses, on understanding grief from a Buddhist psychology perspective, and that was eventually published.

Around that time, I think, I heard that the DSM Task Force was considering adding a new diagnostic category related to grief into its fifth edition. I got really curious about how this diagnosis will come to be given that the predominant way of thinking about grief in English, in the literature, was very much based on this Western worldview. The knowledge generated by psychology and psychiatry, including the DSM, is very powerful in how it impacts people around the world. I became very curious about how this new disorder category could change how we grieve or relate to others who are grieving.

 

Morrill: Yeah, you had noticed that the available Western narratives or psychological theories about grief were skewed and didn’t fit your lived experience of grieving or the observations around you. But more than that, I’m hearing how it rendered any deviations from those theories—you mentioned experiencing continuing bonds with the deceased—as something that was unhealthy.

Wada: That’s right, yes.

 

Morrill: Could you say a bit more about what you mean when you say grief is being medicalized? What would be some of the recent developments or examples of medicalizing grief that we should be aware of?

Wada: Yes. The sociologist Peter Conrad has been writing about medicalization since the 1970s. But to me, his book Medicalization of Society has a nice subtitle that captures what medicalization is: “On the Transformation of Human Conditions Into Treatable Disorders.” Medicalization refers to the process where a human condition that was previously understood outside of medical language gets transformed into a treatable disorder. It’s important to say that it doesn’t mean that something is illegitimately medicalized or over-medicalized. It’s just that an experience or phenomenon has come to be subjected to this “diagnose and treat” logic.

My position here is that grief is one of those human conditions that have recently been medicalized, and that is most evident in the creation of a diagnostic category, now called Prolonged Grief Disorder, which officially got listed in the ICD-11, which is the International Classification of Diseases, and now the DSM-5 Text Revision that’s recently published.

Prolonged Grief Disorder basically what it does is it officializes that if you’re grieving too long or too intensely, then you have a mental disorder. In the DSM-5 Text Revision language, it says “abnormally excessive in duration and/or intensity.” This abnormally excessive duration in the DSM is currently defined as 12 months, and in the ICD, it’s six months.

 

Morrill: I like the way you explained that; a “diagnose and treat” logic. So medicalization, in this discussion, would be taking grieving, which is universally experienced in some way or another and then transforming it into a medical phenomenon, in this case, Prolonged Grief Disorder. Then once this is done, grief becomes amenable to being fixed or treated.

Wada: Exactly, yes. I would add that we, in grief counseling communities, have had terms to describe profound and difficult grief—“complicated grief” was one, “prolonged grief” was one, “disenfranchised grief,” “traumatic grief,” “ambiguous grief”—we have all these terms already. But this disorder category takes the difficult profound grief that we’ve been discussing and trying to support outside of a medical language and framework and transforms it into a mental disorder.

 

Morrill: Could you speak to how prolonged grief disorder has come into being?

Wada: It dates back over a decade. It goes back to when the DSM Task Force started preparing the fifth edition of DSM, which was eventually published in 2013. Some people might recall that there’s a lot of controversy around removing bereavement exclusion from Major Depressive Disorder (MDD) diagnosis. Bereavement exclusion was in place up to the DSM-4-TR. It required that health professionals practice watchful waiting for at least two months before giving a major depression diagnosis to someone who recently experienced the death of a loved one unless it was a severe case.

This removal of bereavement exclusion allowed people who have lost loved ones to receive an MDD diagnosis without waiting for those two months. The removal of the bereavement exclusion was very controversial. It was huge, right? But unfortunately, it overshadowed the other change made in DSM-5, which included Persistent Complex Bereavement Disorder (PCBD). This inclusion of PCBD didn’t receive as much attention as bereavement exclusion because it was not an official diagnosis yet. It went into the section on Conditions for Further Study. But to me, it was kind of a watershed moment because, basically, DSM declared that this was a sort of a next runner-up disorder, and it paved the way for the addition of a Prolonged Grief Disorder in the ICD-11 in 2019.

 

Morrill: In your work, you’ve discussed the institutional forces that may have had a stake in defining grief as a medical disorder and the financial interests involved in creating grief disorders.
Your work, I believe, has mentioned the ways that critiques of the DSM often are discussing what’s referred to as “pet diagnoses” in the revision process, which describes how prominent researchers become invested in their proposed diagnosis, wanting it to grow and be legitimized because their career and their professional success depend upon that. Do you think that this happened with Prolonged Grief Disorder?

Wada: I wasn’t part of the DSM Task Force. I don’t know what transpired. But I can claim from the literature that two camps of prominent researchers fiercely advocated having their version of the disorder name and a corresponding criterion adopted as an official disorder.

One camp was for “complicated grief disorder,” and the other was for “prolonged grief disorder.” In the end, the naming of Prolonged Grief Disorder was selected, but specific symptom criteria were drawn from the two criterion sets, and it all went through some negotiation. What I found interesting (almost kind of amusing) was that this decision about which category to be officially adopted was partly influenced by non-scientific factors, right? It’s interesting to me because it illuminates how scientific knowledge is constructed by combining scientific and non-scientific factors and human and non-human factors.

An example here is the naming of Persistent Complex Bereavement Disorder. It’s a transient unofficial disorder that momentarily entered the DSM-5 as a condition for further study and now completely perished. This was a result of a bad compromise—as if the DSM Task Force just couldn’t pick one over the other. The naming and that being a combination of symptoms from two proposed disorder names, so “persistent” instead of “prolonged,” “complex” instead of “complicated.” Yeah, these kinds of things come into play in a very interesting way.

The way “pet diagnosis” is discussed is tied with the researchers who proposed the diagnosis. But what’s not discussed much is that there are a lot of researchers around, not just that those who proposed it, who also have a stake in that diagnosis. Those are the ones who develop screeners or translate diagnostic criteria or screeners into another language and validate them in other countries. So a web of researchers and institutions are connected and have a stake in what diagnostic categories get adopted. We have yet to see how that transpired with the grief diagnosis.

 

Morrill: I know it is difficult to speculate. At the same time, noteworthy and unusual developments have transpired that don’t seem to be based on new evidence or scientific findings that led to changes as this diagnosis unfolded. Similarly, what about big pharma or pharmaceutical interests? I wonder if there’s more to say about that.

Wada: A lot has been written about the influence of pharmaceutical companies on the DSM. Nearly 70% of those who sat on the task force for the DSM-5 had financial ties to pharmaceuticals. That’s well documented. One of my favorite examples, and it’s a favorite but also very chilling story, is in the book called Crazy Like Us written by Ethan Watters. There’s this fascinating but chilling story of how American pharmaceutical companies led a campaign in Japan that promoted a biomedical narrative of depression and, of course, resulted in the blockbuster sale of SSRIs there. Now, I don’t have any information or facts like that about PGD, so that’s another thing that we have to see.

But what I found during the literature review is that this paradoxical rhetoric or claim-making was at play about pharmacological treatment. Initially, one of the major claims that was used to advocate for the medicalization of grief was, “Okay, we need a new diagnosis for grief disorder because grieving people are getting a major depression or PTSD diagnosis, so they’re getting prescribed SSRIs, which we know don’t work for grieving people. So to spare them from being wrongfully medicated, we need to give them a different diagnosis.” So that was an argument.

The logic was that we needed a new diagnosis so people won’t be medicated. But once PCBD entered into DSM-5 as a condition for further study, there was a shift in the rhetoric. So now the DSM-5 says we need more research; let’s see what medications work, including SSRIs, for people with this soon-to-be-an-official mental disorder. Then, of course, there’s an RCT that’s underway, which is a randomized controlled study on Naltrexone conducted by Holly G. Prigerson and her team. This is the team that advocated for Prolonged Grief Disorder to be adopted in the DSM.

Naltrexone is a medication that is used to treat addiction. The idea is that people who are grieving too much or too long are in a state of addiction to grieving or the reminiscence of people who died. Donna Schuurman, who’s from the Dougy Center in Oregon, recently wrote a powerful piece article for the Mad In America website, and it’s called The Grief Pill is Coming!

She critiqued the prospect of pharmaceutical companies extending their reach to people who are grieving. I did not write about the study of Naltrexone in my paper, but I was aware of that happening. I wrote that, at this point, we know we have a disorder category, and it will not be surprising that we will soon see medication for grief management or grief reduction pills on the market.

 

Morrill: The medicalization of grief potentially has the effect of changing the way we understand grieving—as a mental disorder. Could you speak more about that?

Wada: This is one of the most important points I wanted to make. To do that, I think I need first to establish that we don’t have a definitive, clear answer to the question of what a mental disorder is. This is an unresolved question that philosophers, sociologists, psychologists, and psychiatrists have grappled with for many decades. There’s no biological marker for mental disorders. Many genes, proteins, and neurons are connected to different disorders or groups of disorders. So it’s not one biological marker to one disorder. It’s more a many-to-many kind of relationship, and these biological blocks interact with social and cultural factors.

Also, what’s considered mental illness is socio-culturally, historically, and politically situated. We know this if we consider how “homosexuality” was once a DSM disorder. What’s fascinating about medicalizing grief is that it induces paradoxes in our understanding of what constitutes a mental disorder. The attempt to medicalize grief illustrates how difficult it is to define mental illness.

The most prominent example I use is the DSM definition of mental disorder. Each successive edition of the DSM contains the DSM’s version of the definition of mental disorder—right in the introduction chapter. In the past, bereavement has been used as a counterexample of mental disorder—so what mental disorder is not? In DSM-5 and the DSM-5 text revision, because it didn’t change, it says, “an expectable or culturally approved response to common stressor or loss, such as the death of a loved one, is not a mental disorder.”

To me, the medicalization of grief is controversial because it may fundamentally shake up the concept of mental disorders as they have been defined and understood, however provisional that may be.

 

Morrill: It’s so often overlooked that a mental disorder is a shaky concept and is not fully defined. The biological is always interacting with social, political, and relational contexts. One critique of medicalization is that when the mental health field demarcates “normal” and “abnormal,” what tends to get normalized are the experiences of Western, Educated, Industrialized, Rich, and Democratic samples, or what’s referred to as WEIRD samples.
There’s a way in which neocolonial and ableist forces almost collude to marginalize further, and render other experiences, other forms of grieving, as abnormal. I think that each time we do that, we risk upholding a status quo and supporting systems that, right now, aren’t serving people.

Wada: I discussed this in my paper using the notion of “concept creep.” Concept creep is proposed by Nick Haslam, who happened to be on this podcast a few months ago, and it refers to the expansion of a concept through stretching its boundaries, thresholds, and meanings. As a result, the concept comes to encompass a much broader range of phenomena than initially intended. I see this concept creep happening both in the evolution of PGD diagnostic criteria, as well as in the very definition of mental disorder being challenged right now.

A side note to this is that the DSM-5 definition has a reference to culture, where it says “culturally approved responses to a common stressor or loss.” The PGD diagnostic criteria also have something similar, “the norm deviation clause,” which says the duration and severity of bereavement reaction must exceed expected social, cultural, or religious norms for the diagnosis to be warranted. It’s an overriding clause. So there’s no diagnosis, even if you meet the number of symptoms if your grief reactions are within what’s expected in your social, cultural, and religious context. This is very important.

This is necessary to prevent us from misdiagnosing people from different cultures and religions. I almost wish that this was criterion A instead of criterion E. Then, if it’s within the social and cultural norms, you don’t have to go down the list of symptoms. But I have to say that this is imperfect because it is a very difficult criterion to implement.

First, it puts a lot of pressure on the clinician. It’s almost as if they are expected to have training in anthropology or religious studies to know the norms for each culture and religion, and that is without taking into consideration the person’s acculturation, bicultural identity, or intersectionality. It’s very complex to assess social-cultural norms. Also, we know most psychiatric diagnoses and prescriptions are given by primary care doctors who only see patients for 10 or 15 minutes per visit if you’re lucky. So I am quite skeptical about how well this normal deviation clause will function in practice.

 

Morrill: Some might say that adding grief disorders into mainstream diagnostic manuals is positive. Maybe it allows people suffering to access resources and provides for the rigorous scientific study of grief. What would you say or add in response to this view?

Wada: There’s a lot of unpacking to do with the notion of access to care. Robert Spitzer, who was the chair of the American Psychiatric Association’s Task Force that led to the publication of the DSM-3 in the 1980s, had this very short paper entitled “Diagnosis and Need for Treatment Are Not the Same.” It’s a very telling title. Robert Spitzer, who’s obviously an advocate of the DSM, explains why it is unscientific to use access to care or the need for treatment as an argument for diagnosis. Theorists of psychopathology also say that you can’t include the need for care as part of the definition of mental illness because it leads to diagnostic inflation to the point that it becomes absurd.

If you can think of examples, right? Do couples who don’t get along, couples who need parental skills, or young people who need guidance with their career decisions benefit from accessing professional health? Sure. But are they suffering from mental illness? I don’t think so. We can’t let access to care be a driving force for creating a new diagnosis.

There’s also a social justice piece here that is important to consider. The flip side of the question “Who needs care?” is the question of “Who is currently lacking access to care?” We know that it is poor people, the disempowered, marginalized, and historically colonized—they are the ones who are also subjected to traumatic death at a disproportionately higher rate as a result of political failures, systemic racism, state violence, those kinds of things. So access to care is important, but if you let it drive diagnostic inflation, you risk pathologizing these people at a higher rate.

Access to care is where the logic of “norm deviation” falls apart and, as a result, challenges the notion of what a mental disorder is. For example, for parents who lost a child in a school shooting or any other tragedy, what are the social norms regarding how much or how long they should grieve? Is one year enough? Probably not, right? The research actually shows that they grieve longer than one year.

We can say that it’s socially acceptable that these parents would be grieving intensely beyond a year, two years, three years, or even more for the death of their child. Then they would be disqualified for the PGD diagnosis, according to the norm deviation clause, right? But here’s a paradox, isn’t the point that we wanted to provide care to those who suffer such agonizing grief? This was one of the main justifications used to establish the diagnosis, but in this case, it puts clinicians in a conflict. Okay, what do I do? There is a moral question here inherent in this.

Access to care is a very powerful discursive tool. It’s a moral question. It’s almost like we are morally compelled to give access to care because we are helping professionals. But I think there are more difficult questions that we need to ask ourselves. For example, do we really need to give a diagnosis to give access to care? In the States, I know that diagnosis is tied with third-party reimbursement, but in Canada or Japan, I know that diagnosis does not dictate access to doctor’s care or psychologist care as much as it does in the US. Then it becomes a question of healthcare policy issues.

Over the years, we know more and more diagnoses have entered the DSM. Has it improved access to care? If it has, what kind of care? Psychotherapy? What type of therapy? Pharmaceutical treatment? DSM diagnosis has become what Charles Rosenberg called “bureaucratic imperatives.” He talks about that in his classic paper, the Tyranny of Diagnosis. It’s not science; it’s a bureaucratic imperative driving diagnostic inflation. Then to me, it is time to collectively envision other ways that we can provide mental health care.

 

Morrill: What can we expect now that Prolonged Grief Disorder has been accepted as an official disorder in the DSM?

Wada: I alluded to this when I talk about psychopharmacology and this surge of efficacy studies that look at CBT’s efficacy for grief, apps on smartphones, or those kinds of things. This is a new diagnostic category, so we don’t know what will happen, but we know that every time new diagnostic categories come into being, there are always unintended social consequences. So I’m very curious to see what comes as a result of medicalizing grief, but in general, based on previous studies on other disorders, we know that when something gets medicalized, it triggers interesting and sometimes opposing reactions among the public.

There are those who embrace the diagnosis and actively incorporate it into their self-understanding. It’s understandable because a diagnosis validates the challenge that they might have faced in their lives.

In grief research, Esther Kofod did an interesting study on mothers who lost a child. She talked about this kind of normative nature of grief. For example, some mothers take on diagnosis as something to live up to: “This shows how much I loved my child. The fact that I’m experiencing this disorder shows how much I loved my child.” It’s almost like diagnosis can take on its own life, which is fascinating.

Some people who embrace diagnosis might participate in a patient advocacy movement to get more access to care or disability benefits. In that process, they may end up becoming the agent of concept creep, promoting the expansion of a disorder category. I don’t know what’s going to transpire with grief, but they might say, for example, don’t make us wait for a year or six months, because it’s hard to go back to work after three days or seven days or, so that might be kind of a bottom-up voice that promotes medicalization as well.

But there are other possibilities. The public may resist or reject medicalization. The neurodiversity movement is one example that we see today. It’s also very fascinating so the notion that it’s not that neurodiverse people suffer from mental illness; what’s wrong is that society is structured around neurotypical people only. That’s more of a social model of disability. Something similar could also happen with grief, so people might resist and say, “Don’t call my grief a disorder. Don’t even put my grief into a category because it’s mine to make sense of and my story to tell.” Or people might start saying, “Let’s make workplaces more compassionate.” Why is it in the first place that we expect high productivity all the time and a quick return to normal functioning after major life events like death and illnesses?

We might see this kind of return to a more humanistic, systemic approach to grief or social change in a reaction against medicalization. This is sort of already happening.

 

Morrill: I want to add too that these changes about how grief has been defined are occurring within the context of the COVID-19 pandemic. There is something, I don’t know, disturbing to me about looking at the symptoms of grief during a time when our normal rituals have been thwarted so that grieving may be prolonged, but instead of recognizing the extenuating circumstances that are provoking our grief right now, including how the pandemic has exacerbated social inequality, we’re proposing how these extreme presentations are indicative of a medical problem and a mental health disorder.

Wada: Early in the COVID-19 pandemic, the American Psychiatric Association released a document on COVID-19-related death, and it’s called Considerations for Family and Other Personal Losses Due to COVID-19 Related Death. In there, it’s stated that the rate of PGD resulting from COVID-19-related death might be as high as 20%, so that’s interesting because, as of today, over six million people have died worldwide due to this virus. So for each of these six million people, several people who were close to them are left behind. I mean, imagine 20% of them have this disorder.

If the APA’s estimate is accurate, that’s a pandemic of this new mental disorder diagnosis. But again, here is where paradoxes exist in this norm deviation clause. If it’s socially expectable worldwide that as high as 20% of people will have suffered from prolonged grief, then does the norm deviation clause apply or not? So there is a contradiction there.

 

Morrill: It also makes me think about other ways of understanding this. What if we were to recognize that grieving isn’t always the problem, but the circumstances provoking prolonged grief or interrupting our ability to grieve are what is harmful? From this view, perhaps we even need more grieving if grieving is connected with how we connect with the community and rituals.

Wada: Your comment reminds me of something that this French philosopher Simone Weil said—evil or bad things coexist in good and beautiful things, and our attempts to get rid of the evil or bad things sometimes end up destroying the beautiful as well.

I wonder sometimes if grief is one of those things that is so painful, and maybe we want to take a pill to get rid of it, but at the same time, there’s something humane and beautiful in that experience.

 

Morrill: What is next for you and your research? Recently you’ve been involved in community-engaged research with Indigenous communities.

Wada: Yeah, I’ve been involved in Indigenous research with my colleague, Dr. Karlee Fellner, who is a Cree/Métis researcher. It’s still too early for me to say much about Indigenous ways of grieving. To do Indigenous research and as a non-Indigenous researcher, I first have to make my entry into the community in a good way. I’m still learning by staying in the community, living together, eating together with people in the community, and being part of ceremonies and sweat lodges in the community.

You need to be very careful of speaking for them because misrepresentation and appropriation of their knowledge and traditions have been part of their colonial history. It will take me more time to learn, reflect, and decolonize my thinking process, and that involves, to a certain degree, unlearning my mainstream psychology training. But one thing I can say—and I can say this because this is what Indigenous scholars have been writing and talking about already—is that their grief is tied with the ongoing colonial history and power. There’s collective grief over children who did not return from residential schools, the sixties scopes, missing and murdered girls and women, suicide, and substance overdose deaths resulting from the despair implanted by colonialism. At the same time, it’s important to acknowledge that there’s also collectiveness and resiliency. A resiliency that is not an individual kind of trait, but it’s more of a collective survivance— I know that’s what it is called.

Also, the Indigenous way of grieving is very much connected with their spirituality. It’s through their connection with the land, spirits, and the Creator. I’m starting to understand that the conceptualization of grief from the DSM or Western psychology is a very individualistic, non-spiritual, pathology-based framework. Providing care and treatment based on that framework will be yet another form of colonial violence. What gets pathologized is socially and historically embedded. Often, it’s the dominant power that decides it.

 

Morrill: Thank you for speaking with me today. Really edifying to discuss these major changes around grief with you.

Wada: Oh, thank you so much. It’s a fascinating topic, and I think we are in a key moment in history when we think about grief, which is very much a human experience. Thank you very much for giving me the opportunity to talk about this.

 

 

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MIA Reports are supported, in part, by a grant from the Open Society Foundations



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