Should grief be considered a medical disorder?

 

One Year to Mourn

Should grief be considered a medical disorder?

Paul Lauritzen, Mathew A. Crawford

August 1, 2024

Charles Cottet, Mourning in Ouessant, 1903 (Peter Horree/Alamy Stock Photo)

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In March 2022, the American Psychiatric Association (APA) announced a revision to its widely influential Diagnostic and Statistical Manual of Mental Disorders. The revised manual, known as DSM-5-TR, included a new diagnostic category: prolonged grief disorder (PGD). The announcement ignited a firestorm of controversy.

“Pathologising grief is an insult to the dignity of loving relationships—it proclaims grievers as mentally ill and will too often result in the careless prescription of antidepressants or other drugs to treat enduring symptoms, without consideration of the context.” So wrote the authors of a short and scathing article in the medical journal The Lancet Psychiatry, published not long after the DSM-5-TR was released.

The outrage and debate were not confined to psychiatrists and psychologists. The controversy over recognizing PGD as a mental disorder took many forms. Studies followed that questioned whether the empirical evidence justified introducing a new diagnostic category. An essay documenting the convoluted history and the competing research teams that argued over naming the new disorder appeared. Newspaper opinion columnists weighed in, countless podcasts were launched, and, in a tabloid-worthy moment, Prince Harry’s memoir was analyzed to show he was suffering from PGD.

As scholars collaborating on a volume about grief that brings together theoretical reflections on grief with the actual experiences of grieving individuals, we think it is useful to ask whether grief should be conceptualized as a mental disorder and what the likely consequences of treating it this way will be.

But our interest in how to conceptualize grief is not merely academic. We have both experienced intense and long-lasting grief. Lisa, Paul’s wife of more than three decades, died six years ago; Mathew’s eldest son, Isaiah, died fifteen years ago after a three-year journey with pediatric cancer. And for both of us, the loss changed the trajectory of our lives. We would both say that we have moved forward but not that we have moved on. We both continue to experience a profound sense of loss; we both continue to mourn our loss. So, the debate about whether grief should be considered a medical disorder feels personal. 

The controversy also offered the opportunity to review the literature on prolonged grief against the backdrop of our own experiences. That review began by asking Warren Kinghorn—Esther Colliflower Associate Research Professor of Pastoral and Moral Theology at Duke Divinity School and associate professor of psychiatry at Duke University Medical Center—about the controversy. Kinghorn has written critically about how the DSM can be misused and urged psychiatrists to embrace an “epistemological humility” in diagnosing disorders using the DSM. But he believes the negative response to categorizing prolonged grief as a disorder has generally been too simplistic. It misses the fact that grief can be debilitating, can induce suicidal ideation, and may require specialized intervention.

Kinghorn has written about the “hegemony of the symptom” that can lead psychiatrists or primary-care physicians to diagnose a disorder without sufficient attention to the context in which the symptoms are present. This does not mean, however, that the indices for diagnosis offered by the DSM are mistaken or unhelpful. The criteria for categorizing PGD, for example, are very clear. For an adult who has had someone close to them die, PGD can be diagnosed if, after a year, they exhibit intense yearning and/or longing for the deceased or a preoccupation with thoughts or memories of the deceased. In addition, diagnosis requires that at least three of the following symptoms be frequently present since the death of the deceased and every day for the month prior to diagnosis: identity disruption, a sense of disbelief about the death, avoidance of reminders of the death, intense emotional pain, difficulty reintegrating into everyday life, emotional numbness, a feeling that life is meaningless, and intense loneliness.

While these symptoms are used for diagnostic purposes, the DSM makes clear that many more symptoms may be experienced by those suffering from PGD, including guilt, decreased self-care, loss of appetite, hallucinations, bitterness, anger, sleep disruptions, and suicidal ideation. Kinghorn’s caution about too quickly dismissing prolonged grief as a disorder is clearly important. As he told us, no clinician views grief itself as an abnormal human response to loss. Labeling some kinds of grief as a disorder is simply a recognition that grief can take on an unhealthy form that may require psychiatric intervention. The DSM revision does not designate all grief as a disorder; rather, it sets the criteria for disordered grief.

It is arbitrary to set a time limit on appropriate grief has been borne out by the fact that the time limit was controversial when the APA considered recognizing PGD as a disorder.

We do not have the medical or scientific background to assess all the criteria set out in the DSM, but one criterion stood out to both of us—namely, that PGD is only appropriately diagnosed if symptoms persist for longer than a year after the death of a loved one. Our sense that it is arbitrary to set a time limit on appropriate grief has been borne out by the fact that the time limit was controversial when the APA considered recognizing PGD as a disorder. The original proposal was that the time limit would be set at six months, but there was strong opposition to such a short time limit for acceptable grief. The one-year time frame was arrived at not solely on the basis of clinical data, but in recognition of expected public opposition to a shorter threshold. As Holly Prigerson, the leader of one of the two research groups that pushed for the recognition of PGD as a mental disorder, put it, the APA “begged and pleaded” to define the syndrome more conservatively—with a one-year threshold—to avoid a public backlash.

The fact that an important criterion for this new medical disorder was partly based on public opinion is one reason that we are not as sanguine as Kinghorn about designating prolonged grief as a disorder. Another is that even when identifying criteria is more of a science than an art, there remains disagreement about both the facts that diagnostic categories seek to capture and what the consequences of introducing new disorders will be.

For example, there is notable debate in the supporting literature about the prevalence of prolonged grief. It is estimated that between four and ten percent of those who experience the loss of a loved one will suffer from PGD. It may well be that popular magazines rely too heavily on a caricature of the DSM when critiquing PGD, but criticisms come from within the field of psychiatry and other scholarly disciplines as well. Allen Frances, who was chair of the taskforce that put together the DSM-4, has complained that the DSM-5 has dramatically expanded diagnostic categories without due caution or warnings, led to overdiagnosis, and directly facilitated the marketing of psychotropic drugs to patients with these newly diagnosed disorders.

The numbers Frances cites in his book Saving Normal (2013) are stunning, and the rates of prescription-drug use show no sign of waning. According to the 2020 National Health Interview Survey used by the CDC, 16.5 percent (one in six) Americans have taken prescription medication for their mental health within a year of the survey. And that was a survey from before the Covid pandemic. By all accounts, the use of prescription medication for mental-health issues skyrocketed in the wake of the pandemic.

Peter Conrad, author of the book The Medicalization of Society (2007), notes the proliferation of disorders over the past thirty years. There’s a veritable alphabet soup of new diagnostic categories: ADD, ADHD, BED, CFS, DMDD, MAD, MDD, MND, PTSD, and many others. Clearly, the number of psychiatric illnesses has increased dramatically, but as Conrad notes, this increase can be understood in very different ways. “Does this [increase],” he asks, “mean that there is a new epidemic of medical problems or that medicine is better able to identify and treat already existing problems? Or does it mean that a whole range of life’s problems have [sic] now received medical diagnoses and are subject to medical treatment, despite dubious evidence of their medical nature?”

 

Classifications affect the people classified and over time those who are labeled often work to change the characteristics assigned to those classifications, creating a kind of feedback loop.

There is value in asking whether the increase in diagnostic categories comes from an epidemic of new medical problems—perhaps occasioned by modern social structures that erode communal support for basic human flourishing—or from a misguided effort to pathologize normal human behavior, but that is not our task. We find it more useful to ask what the consequences are likely to be of defining prolonged grief as a medical disorder.

To answer that question, it is important to understand the dynamic by which an experience like grief gets labeled as a medical problem, defined in medical terms (as a disorder with symptoms), and treated with medication or other kinds of therapy. Sociological studies like Conrad’s are helpful for understanding this process, but we want instead to draw upon the work of the late distinguished Canadian philosopher of science, Ian Hacking. In a series of books and journal articles spanning decades, Hacking systematically explored what, with apologies to Kant, might be called science’s categorical imperative. That is, scientists appear almost unconditionally obligated to impose categories on phenomena to control the world. Nowhere is this truer, says Hacking, than in medicine. Hacking’s work is helpful in thinking about grief because he shows how the classifications we assign to people are not neutral labels. Classifications affect the people classified and over time those who are labeled often work to change the characteristics assigned to those classifications, creating a kind of feedback loop. He gives a provocative name to the process: “Making up people.” 

In his book, Rewriting the Soul, Hacking sets out the basic dynamics of how “kinds” of people are “made.” His case study is multiple-personality disorder. First, people who are unhappy in certain ways get classified medically, in this case as suffering from multiple personality disorders (MPD). A certain type of person that was not previously recognized thus comes into existence, and then psychiatrists, journalists, talk-show hosts, and others begin to identify common features of those suffering from the disorder.

One way to understand the claim that diagnostic categories can create people is in relation to MPD. Hacking writes, “In 1955 this [being someone with MPD] was not a way to be a person, people did not experience themselves in this way, they did not interact with their friends, their families, their employers, their counselors, in this way; but in 1985 this was a way to be a person, to experience oneself, to live in society.”

For our purposes, the idea that a diagnostic category can lead “patients” to see themselves in novel ways, just as it leads friends, families, coworkers, and others to see them in new ways, helps us understand that a new diagnosis like PGD is unlikely to be applied simply to those experiencing extreme and debilitating grief. Once such a disorder enters the zeitgeist as a way of being in the world, it will often be discussed in the popular press, debated in social media, displayed in characters on television and in movies, etc. We can then expect individuals to experience their own grief accordingly and diagnose themselves as suffering from a grief disorder.

Consider two problems that are likely to follow, reshaping how many will grieve: the pathologizing of loving bonds at the heart of grief and, in turn, a medicalized goal of weakening or severing these bonds instead of integrating them into a better future for those grieving. The first has to do with the fact that one important strand of thinking about grief embedded in the APA diagnosis is that grief is a kind of post-traumatic stress disorder related to an unhealthy attachment to a deceased loved one. The emphasis on the symptom of “yearning,” for example, highlights the conceptualization of grief as a disordered attachment. The difficulty with this way of thinking about grief can be seen in how Prigerson explained the condition in a podcast created for health-care professionals. When asked whether grief is an expression of love, Prigerson downplayed the connection. She noted that a lot of people think of grief as a manifestation of love because it “just feels right,” but she thinks it is best to conceive of grief as wanting or craving something that one cannot have.

Our own sense is that most people rightly think of grief as a form of love and that categorizing grief as a kind of attachment disorder will erode that connection. Carl Elliott has written extensively about the relationship between psychiatry and identity. We asked Elliott whether he thought diagnosing grief as a medical disorder would transform the understanding of grief in a way that affects identity.

In response, he drew on a thought experiment that Gilbert Meilaender once made to answer this question. Meilaender wondered what we would say about someone who had lost his spouse of twenty-five years, buried her, and went back to work the following week—not out of duty, nor as a distraction from the pain, nor out of numbness, but as someone who was “positively buoyant.” Elliott was so struck by the phrase “positively buoyant” that he remembered it decades after Meilaender first posed the case. It seemed to Elliott, as it did to Meilaender, that if the widower felt that way, most of us would find this unsettling and question his love for his wife. The thought experiment has an important point: there can be goodness in the sorrow of grief, in all its obvious and not-so-obvious expressions, as fitting for a life of shared love that has come to an end. Medicating that sorrow away, instead of integrating the reality of the loss into one’s life (perhaps through psychotherapy, community support, etc.), misses the way grief flows from, and can be partly constitutive of, one’s identity.

 

One problem with medicalizing even prolonged grief in this way is that what passes for common knowledge about grief may harden into a set of facts that are thought to be invariably true for all or most who grieve.

The second problem with a new diagnostic category coming to shape identity is what Hacking referred to as a “looping effect.” In addition to the way individuals come to see themselves as suffering from a condition that must be treated, physicians begin to search for treatments to address new disorders. Elliott has noted how this happens when pharmaceutical companies develop drugs to treat new conditions and then work to persuade patients and physicians of the need for the newly developed “treatments.” Elliott writes, “People diagnosed as sufferers of the condition in question begin to think of themselves differently, interpreting problems such as shyness or distractibility as symptoms of an illness that can be treated by the drug being marketed. In turn, the behavior and self-image of those patients is studied by pharmaceutical marketers, who use that knowledge to reinforce their marketing messages. In this way, a new medical condition takes shape and grows.” The United States is nearly unique in allowing direct-to-consumer pharmaceutical marketing, and such marketing exacerbates the looping effect.

That we are likely to see the dynamic Elliott describes take hold in relation to grief is suggested by the fact that, monthsbefore PGD was recognized in the DSM-5-TR, a drug study was already underway to test the use of naltrexone in PGD patients. If naltrexone proves to be effective in ameliorating some of the “symptoms” of prolonged grief, it is a near certainty that it will be marketed directly to those who have lost a loved one.

In fact, the two problems we just identified are joined in this study. Naltrexone is an anti-addiction medication with a clear rationale for the clinical trial in the study protocol, which reads: “PGD can be conceptualized as a disorder of addiction and therefore could benefit from being treated with medications that are currently used to treat such disorders. One such medication is naltrexone, which is currently used to treat alcohol and opioid dependence.” In other words, the hope is that naltrexone will block an attachment to the deceased in the way that it blocks an addict’s yearning for alcohol or drugs.

It is worth noting here that conceptualizing common experiences in medical terms that open the door to treatment is not intrinsically negative. Before alcohol abuse was categorized as an addiction that might be helped through medication, it was conceived as a moral failing and a source of shame and humiliation. Or consider the shift in conceptualizing suicide as frequently the result of mental illness, which led to better suicide-prevention measures and eased the burdens on the family and friends who survived a loved one’s suicide. Categorizing alcohol abuse and suicidal ideation as mental-health issues is arguably a moral as well as a medical advance.

Still, it is hard to see how defining prolonged grief as a kind of addiction is an improvement over understanding it as an expression of love that may sometimes be unhealthy and call for psychiatric intervention. One problem with medicalizing even prolonged grief in this way is that what passes for common knowledge about grief may harden into a set of facts that are thought to be invariably true for all or most who grieve. We “know,” for example, that alcoholics must not take even a single drink if they don’t want to relapse. When applied to alcohol abuse, this perspective might lead to a positive identity marker within the sober community, but applied to grief the implications are more troubling. Will those who grieve come to be told that they must never think of their loved one, lest a powerful pining for the beloved return?

That this is not merely a theoretical concern was confirmed to us by Patrick O’Malley, author of Getting Grief Right. O’Malley is a psychotherapist in Fort Worth, Texas, who specializes in grief counseling and has counseled individuals, couples, and families in his private practice for more than forty years. When we spoke to O’Malley, he noted that Elisabeth Kübler-Ross’s five-stage model of grief had been the prevailing psychological model of grief for many years and that patients would routinely self-diagnose themselves as in need of therapy because they couldn’t seem to manifest one of the five stages. As he memorably put it, “Patients would come to me and say ‘Doc, I’m just not angry, can you help me be angry?’”

Indeed, O’Malley confirmed that the kind of effects discussed by Hacking are already very much in evidence in response to recent efforts to conceptualize grief as a mental disorder. Even before the APA recognized prolonged grief as a disorder, patients were pushing back against the whole idea. Without mentioning Hacking, O’Malley described exactly the looping dynamic that medicalizing normal behavior would bring. On the one hand, he said he would not be surprised if patients began seeking treatment thirteen months after a loved one died because the criteria for diagnosing PGD require a year of ongoing intense grief. On the other hand, some grieving individuals may not seek help because they resist being labeled as having a mental disorder.

 

A neurobiological view of grief that understands it as an attachment disorder may leave little room for the existential engagement with the meaning of life, death, and loss that grief work requires.

In the end, there are both benefits and harms of conceptualizing grief as a medical problem. Thinking of grief as a psychiatric disorder will almost certainly promote a view of bereavement as an individual problem, not a communal one. But not recognizing debilitating long-term grief as a disorder may place obstacles in the path of those who do indeed need medical help. Our judgment, however, is that there is more harm than benefit in thinking of even prolonged grief as a mental disorder. The gravitational force exerted by a medical model of prolonged grief is likely to pull other forms of grief into its orbit, where pharmaceutical treatment and brain chemistry are emphasized. But such reductionist thinking may impede a richer understanding of a profound human experience. Medicalizing grief is likely to decontextualize bereavement and isolate the individual in his or her pain. Communal resources, including cultural and religious rituals and practices, may well be eroded. In short, a neurobiological view of grief that understands it as an attachment disorder may leave little room for the existential engagement with the meaning of life, death, and loss that grief work requires.

This point has been made passionately by Alan Wolfelt, author of Companioning the Bereaved: A Soulful Guide for Caregivers. We do not endorse his use of the language of “contamination” to describe how the medical model has come to shape the experience of grief for many, but he is insightful about how contemporary models of grief seek to curtail mourning as quickly as possible and leave little room for religious or cultural rituals in caring for the bereaved. As Wolfelt puts it, “Death and grief are spiritual journeys of the heart and soul,” not just chemical imbalances of the brain.

We asked Fr. Richard Rutherford, CSC, a liturgical theologian whose book The Death of a Christian: The Order of Christian Funerals has long been taught in Catholic seminaries, whether he shared Wolfelt’s concern that treating grief as a medical disorder will leave little room for religious responses to the loss of a loved one. His response was both balanced and perceptive. “There is nothing intrinsically problematic about thinking of grief in medical terms,” he said. “Responding to grief requires a holistic approach. Medicine offers one set of tools; spiritual practices another.” Nevertheless, Rutherford cautioned that a medical approach is easily “monetized,” and that a medical approach to grief may tempt one to think of loss as something to get over. “We do not get over the loss of someone we love. We just get used to it.”

Rutherford believes that grieving Christians may find the Biblical tradition of lament helpful. They, too, can cry out, “My God, my God, why have you forsaken me?” and know that neither the existence nor the intensity of their grief will be judged. They can be confident that the ecclesial community will be with them in their loss, just as those who support the bereaved know that they will be comforted when their time of grief inevitably comes.

We know from direct experience the pain of losing someone we loved intensely. We also know that the pain and grief to which such a loss gives rise can be debilitating. But we have also experienced the way in which intense grief can be the occasion for growth. Grief invites—and sometimes requires—those who mourn to take stock of their lives. When grief is conceptualized as only loosely related to love, the experience is unlikely to lead the bereaved to ask whether he or she has lived or loved well. It is unlikely to lead those in mourning to examine the trajectory of their lives. Properly understood, grief can be a gift. This is not to say that anyone would or should choose the kind of loss that occasions grief, but dealing with the loss of a loved one is potentially a transformative human experience and one that, in our view, should not be short-circuited by treating grief as a mental disorder.

Paul Lauritzen is emeritus professor of theology and religious studies at John Carroll University. 

Mathew A. Crawford is a faculty member in the Pre-Health Professions Institute and Burnett School of Medicine at Texas Christian University. They are currently collaborating on an edited volume of essays on the medicalization of grief.