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The new edition of a psychiatric manual called DSM-5 tackles what to do when mourning becomes complicated or leads to depression
By Virginia Hughes | June 7, 2011 SciAm M&BSooner or later most of us suffer deep grief over the death of someone we love. The experience often causes people to question their sanity—as when they momentarily think they have caught sight of their loved one on a crowded street. Many mourners ponder, even if only abstractedly, their reason for living. But when are these disturbing thoughts and emotions normal—that is to say, they become less consuming and intense with the passage of time—and when do they cross the line to pathology, requiring ongoing treatment with powerful antidepressants or psychotherapy, or both?
Two proposed changes in the “bible” of psychiatric disorders—the Diagnostic and Statistical Manual of Mental Disorders (DSM)—aim to answer that question when the book’s fifth edition comes out in 2013. One change expected to appear in the DSM-5 reflects a growing consensus in the mental health field; the other has provoked great controversy.
In the less controversial change, the manual would add a new category: Complicated Grief Disorder, also known as traumatic or prolonged grief. The new diagnosis refers to a situation in which many of grief’s common symptoms—such as powerful pining for the deceased, great difficulty moving on, a sense that life is meaningless, and bitterness or anger about the loss—last longer than six months. The controversial change focuses on the other end of the time spectrum: it allows medical treatment for depression in the first few weeks after a death. Currently the DSM specifically bars a bereaved person from being diagnosed with full-blown depression until at least two months have elapsed from the start of mourning.
Those changes matter to patients and mental health professionals because the manual’s definitions of mental illness determine how people are treated and, in many cases, whether the therapy is paid for by insurance. The logic behind the proposed revisions, therefore, merits a further look.
The concept of pathological mourning has been around since Sigmund Freud, but it began receiving formal attention more recently. In several studies of widows with severe, long-lasting grief in the 1980s and 1990s, researchers noticed that antidepressant medications relieved such depressive feelings as sadness and worthlessness but did nothing for other aspects of grief, such as pining and intrusive thoughts about the deceased. The finding suggested that complicated grief and depression arise from different circuits in the brain, but the work was not far enough along to make it into the current, fourth edition of the DSM, published in 1994. In the 886-page book, bereavement is relegated to just one paragraph and is described as a symptom that “may be a focus of clinical attention.” Complicated grief is not mentioned.
Over the next few years other studies revealed that persistent, consuming grief may, in and of itself, increase the risk of other illnesses, such as heart problems, high blood pressure and cancer. Holly G. Prigerson, one of the pioneers of grief research, organized a meeting of loss experts in Pittsburgh in 1997 to hash out preliminary criteria for what she and her colleagues saw as an emerging condition, which they termed traumatic grief. Their view of its defining features: an intense daily yearning and preoccupation with the deceased. In essence, it is the inability to adjust to life without that person, notes Mardi J. Horowitz, professor of psychiatry at the University of California, San Francisco, and another early researcher of the condition. Prigerson, then an assistant professor at the Western Psychiatric Institute and Clinic in Pittsburgh, hoped the meeting would begin the process of finding enough evidence to support changing the DSM. “We knew that grief predicted a lot of bad outcomes—over and above depression and anxiety—and thought it was worthy of clinical attention in its own right,” says Prigerson, now a professor of psychiatry at Harvard Medical School.
A spate of studies since then—not only of widows but of parents who had lost a child, tsunami survivors and others—has further confirmed and refined that initial description. In 2008 researchers got their first hint of what complicated grief disorder looks like at the neurological level. Mary-Frances O’Connor of U.C.L.A. scanned the brains of women who had lost their mother or a sister to cancer within the past five years. She compared the results of women who had displayed typical grief with those suffering from prolonged, unabated mourning. When, while inside the scanner, the study participants looked at images of the deceased or words associated with the death, both groups showed a burst of activity in neurological circuits known to be involved in pain. The women with prolonged grief, however, also showed a unique neural signature: increased activity in a nub of tissue called the nucleus accumbens. This area, part of the brain’s reward center, also lights up on imaging scans when addicts look at photographs of drug paraphernalia and when mothers see pictures of their newborn infant. That does not mean that the women were addicted to their feelings of grief but rather that they still felt actively attached to the deceased. Meanwhile clinical studies have shown that a combination of cognitive therapy approaches used to treat major depression and post-traumatic stress may help some people with complicated grief work through it.
As these and other studies began to pile up, a few researchers turned to complex statistical analysis to validate more precisely the exact combination of features that define the condition. In 2009, more than 10 years after the Pittsburgh panel, Prigerson published data collected from nearly 300 grievers she had followed for more than two years. By analyzing which of some two dozen psychological symptoms tend to cluster together in these participants, she devised the criteria for complicated grief: the mandatory presence of daily yearning plus five out of nine other symptoms for longer than six months after a death [see box at right]. This is exactly the type of rigorous, quantitative study that is needed before a condition makes it into the DSM. “People who meet the criteria for complicated grief do not necessarily meet criteria for either depression or post-traumatic stress disorder,” says Katherine Shear, a professor of psychiatry at Columbia University. “If you didn’t have this disorder [in the DSM], then those people would not get treatment at all.”
The case for diagnosing people as depressed and treating them accordingly when they are still newly bereaved is more contentious. Although some symptoms of grief and depression overlap (sadness, insomnia), the two conditions are thought to be distinct. Grief is tied to a particular event, for example, whereas the origins of a bout of clinical depression are often more obscure. Antidepressants do not ease the longing for the deceased that grievers feel. So in most cases, treating grieving people for depression is ineffective.
A few studies, however, have suggested that mourning may trigger depression in the same way that other major stresses—such as being raped or losing one’s job—can bring about the condition. If so, some people who grieve may also be clinically depressed. It seems unfair, advocates of changing the DSM argue, to make mourners wait so long for medical help when anyone else can be treated for depression after just two weeks of consistent depression. “On the basis of scientific evidence, they’re just like anybody else with depression,” says Kenneth S. Kendler, a member of the DSM-5 Mood Disorder Work Group, which reviews all proposed changes to the manual related to anxiety, depression and bipolar disorder (a condition characterized by extreme mood swings). It is for this reason that the group recently suggested deleting the clause that specifies a two-month wait before mourners can receive a diagnosis of, and therefore treatment for, depression.
Critics of the move counter that it will lead to unwarranted diagnoses and overtreatment. “It’s a disastrous and foolish idea,” says Allen Frances, who chaired the task force that produced the fourth edition of the DSM. He worries about how the DSM-5 may be used by sales representatives from pharmaceutical companies to urge doctors to write more prescriptions. Indeed, Frances believes that changes in the edition that he oversaw inadvertently sparked an unwarranted explosion of diagnoses for bipolar disorder in children. Prigerson, for her part, predicts a general backlash against the idea that mourners might ever need psychiatric treatment. “There will be vitriolic debates when the public fully appreciates the fact that the DSM is pathologizing the death of a loved one within two weeks,” she says.
In many ways, parsing the differences between normal grief, complicated grief and depression reflects the fundamental dilemma of psychiatry: mental disorders are diagnosed using subjective criteria and are usually an extension of a normal state. So any definition of where normal ends and abnormal begins will be the object of strongly held opinions. As Frances says, “There is no bright line—it is always going to be a matter of judgment.”
Is there a way we all grieve? Claudia Hammond interviews Ruth Davies Konigsberg All in the Mind, Radio 4, 14.06.11
Is there a way we all grieve? The five stages of grief - denial, anger, bargaining, depression and acceptance were proposed more than forty years ago by the psychiatrist Elizabeth Kubler-Ross and are now taught across the world. But with little evidence that these stages are what people really experience when they are bereaved - how did they become so popular and what research has been done into the process of grief?
Text of interview
Claudia Hammond (CH): When a person’s bereaved we’re told they will go through a grief process that consists of five stages: Denial, Anger, Bargaining, Depression and then finally Acceptance. These stages were proposed more than 40 years ago by psychiatrist Elizabeth Kubler-Ross. The stages have become so well-known that they’re now taught across the world and have even made it into popular culture with appearances in the Simpsons and The Office. Damien Hurst even did a series of paintings called DABDA named after the acronym for the stages. But despite 40 years of fame, there’s surprisingly little evidence that these are the experiences people really have when they’re grieving. Ruth Davies Konigsberg has looked in depth at this subject and is the author of The Truth About Grief. I asked her what the concept behind the stages is.
Ruth Davies Konigsberg (RDK): The sort of overarching idea behind the stages, of course, is that you need to go through them in order to come out the other side: as painful as it might be it’s beneficial in the end to have that whole experience. And you need to take your time to go through them. They were always conceived of as being sequential, so that one always has to follow the other – you can’t just skip them and go straight to depression for example or acceptance; they are all necessary steps along the, quote/ unquote, ‘journey’ of grief.
CH: And how did the idea of these stages of grief come about?
RDK: Well, Elizabeth Kubler-Ross popularised the notion of the five stages, although they’d been brewing in the social sciences a little bit. What Kubler-Ross did, she applied them to one’s own death and that was how they were originally conceived in her own book, On Death and Dying, that was published in 1969. She was very interested in ‘end of life issues’ and to her credit she brought a lot of attention to these issues and she was doing revolutionary interviews with dying patients at the University of Chicago which she then turned into her theory about how one goes through these stages when one is facing one’s own death.
CH: What evidence is there to support the idea that you do go from denial to anger to bargaining to depression and finally get to this acceptance stage?
RDK: Very little. In fact what the evidence shows, and there’s some very interesting studies being done where people who were bereaved were actually interviewed on a daily basis, and the fluctuations are very vast on a day to day basis. And they are probably vast even hour to hour. So the experiences are very up and down. You may experience some of the emotions that are described in some of those stages but they certainly don’t go in any kind of progression, and moreover you don’t have to experience them in order to grieve successfully.
CH: So I suppose with something like anger, you might feel angry if you blame someone else for the death, but if an older relative dies at the end of their life, anger might not be something you feel.
RDK: Absolutely. You might feel angry, you might feel depression, you might feel a whole bunch of different things – the checklist of grief symptoms is very long. And moreover you might feel angry one minute and have happy memories the next. So it’s very up and down and it’s much less predictable than the Stages might have you believe.
CH: So why do you think this idea has taken hold and has persisted for so many decades if it doesn’t actually fit in with what people’s real experiences are?
RDK: It’s very sort of appealing in a way – it’s very neat and tidy and again it helps practitioners because it gives them a sense of something they can tell their clients or tell people who are bereaved. And the other thing is that there’s always confirmation bias: once those stages were out there, people would remember, of course, or take into account when they are experiencing one of the so-called stages, but disregard when they’re not. So it shows the power of theories and how once a theory gets popularised they become self-perpetuating.
CH: Does it matter if it’s not quite what happens if it still gives people some idea of the huge, overwhelming range of emotions that people can feel?
RDK: Well, it matters only for those who don’t experience it. It’s very reassuring for people who do maybe experience some of the emotions, but it’s also very stigmatising for people who don’t. So that’s where it becomes harmful, I think: if it doesn’t line up with what you’re actually experiencing you might feel you are grieving incorrectly or there’s something wrong with you or you’re in denial and you need help. So that’s where it becomes problematic.
CH: So what research has been done into how people do actually grieve? What can we tell people for how they do it – is there an average length for grieving and then moving on?
RDK: One thing you always hear is that everyone’s grief is unique and there is no timeline for grief. But there actually have been quantitative studies where some patterns have emerged. George Bonanno up at Columbia University has been doing some work looking at widows and widowers and what he found was that for people whose spouses died of natural causes that for the most part, the majority of people, their most intense symptoms seemed to abate by about six months. And that it’s really a small minority, probably about 10 to 15 percent of people, who have really prolonged difficulties. And that’s probably past a year where, if you’re still having a hard time and really unable to function, where you still haven’t got back on your feet. Those people are now what physicians consider to be suffering from ‘complicated grief’.
CH: That sounds like quite a low percentage who actually have real, long-lasting difficulty with it. You talk in your book about the extent of grief counselling that’s on offer in the United States. Would you say that we are pathologising grief, when for many people it’s just a very normal process?
RDK: Yes, I think there is that tendency. The idea that everyone should see a counsellor certainly I think is an overreach. What the research has shown is that the small percentage who are having the hardest time are obviously the ones who really can be helped by bereavement interventions. So for everybody else, grief more or less gets better with time on its own. When you compare people who had interventions, whether it’s support groups or individual counselling, with the group of people who didn’t have interventions, both get better in the same amount of time. So what that means is that counselling for the majority of people doesn’t measurably benefit the recipients.
And I think another thing that the Stages did was that they actually lengthened our expectations of grief, of how long it’s supposed to last. And so now certainly I think, although there are double standards in this in terms of gender, one thing that the Stages have done is lengthened our expectations. Grief can be very hard on some people and on others it isn’t so hard. It’s definitely something that we seem to have a natural resilience to be able to handle.
The other thing is that when I say that symptoms of grief alleviate by a certain time or what have you, I certainly don’t mean that those bereaved people still don’t miss their lost loved one – it doesn’t mean you’re a cold person if you’re back on your feet and able to smile or laugh. People still think and feel about their lost loved one for years and years and years. But that’s not grief. Loss is for ever, but thankfully, grief is not.
CH: Ruth Davies Konigsberg.
Two Big Myths about Grief People are not always devastated by a death and should be allowed to recover in their way By Hal Arkowitz and Scott O. Lilienfeld | January 5, 2012
Virtually all of us experience the loss of a loved one at some point in our life. So it is surprising that the serious study of grief is not much more than 30 years old. Yet in that time, we have made significant discoveries that have deepened our understanding of this phenomenon—and challenged widely held assumptions.
In this column, we confront two common misconceptions about grief. The first is that the bereaved inevitably experience intense symptoms of distress and depression. The second is that unless those who have experienced the death of a loved one “work through” their feelings about the loss, they will surely experience delayed grief reactions, in which strong emotions may be triggered by events unrelated to the loss, even long after it occurred. As we will show, neither belief holds up well to scientific scrutiny.
Most people believe that distress and depression almost always follow the death of someone close, according to psychologists Camille B. Wortman of Stony Brook University and Kathrin Boerner of Mount Sinai School of Medicine. Symptoms of distress include yearning for the deceased, feeling that life has lost its meaning, having anxiety about the future and experiencing shock at the loss. Depression involves feeling sad and self-critical, having suicidal thoughts, lacking energy, and undergoing disturbed appetite and sleep.
To examine this belief, several groups of investigators tracked bereaved people, mostly widows and widowers, for up to five years. Results revealed that between 26 and 65 percent had no significant symptoms in the initial years after their loss; only 9 to 41 percent did. (The variability results partly from differences in how the symptoms were measured.) And the depression of some may be chronic rather than a reaction to the death.
Psychologist George A. Bonanno of Columbia University and his colleagues examined this possibility and other questions in a prospective study published in 2002. They followed about 1,500 elderly married individuals over several years. During that time 205 subjects lost a spouse, after which the investigators continued to track them for 18 months. Surprisingly, about half of the bereaved spouses experienced no significant depression either before or after the loss. Nor did they display serious distress, although some did feel sad for a short time. Eight percent of the participants were depressed before losing his or her partner—and stayed that way. For about 10 percent—individuals who had reported being very unhappy in their marriage—the death actually brought relief from preexisting depression.
The spouse’s death did precipitate depression in 27 percent. Of these individuals, a substantial proportion (about 11 percent of the total) started improving after six months and became symptom-free within 18 months. The rest of that subgroup did not get better—but even so, more than 70 percent of the study’s participants neither developed depression nor became more depressed as a result of their spouse’s demise. (The small number of remaining subjects fit various other patterns.) These results tell a clear story, at least where an elderly partner is concerned: most people are resilient and do not become seriously depressed or distressed when someone close to them dies.
Working It Out
In her 1980 book The Courage to Grieve, social worker Judy Tatelbaum wrote that after the death of a loved one “we must thoroughly experience all the feelings evoked by our loss,” and if we don’t “problems and symptoms of unsuccessful grief” will occur. The idea that people need to work through grief originated with Sigmund Freud and is still pervasive. It usually includes expressing feelings about the loss, reviewing memories about the deceased and finding meaning in the loss. According to this view, those who do not explore their emotions will suffer the consequences later.
Yet grief work may be unnecessary for the large proportion of people who do not become significantly distraught after a loss. And when researchers have tested the common grief-work techniques of writing or talking about the death, some have found small benefits for the procedures, but most have not. In addition, the jury is still out on grief counseling, in which professionals or peers try to facilitate the working-through process. Results from two quantitative reviews of the efficacy of such therapy found no significant gains from it, and a third found just a modest positive effect. One caveat: the benefits might be slightly greater than these studies indicate because most of the subjects were recruited by the researchers, and these individuals may be less in need of counseling than those who seek help.
Finally, two teams of researchers followed bereaved persons, including spouses, adult children and parents, for up to five years after their loss and found little or no evidence of a delayed grief reaction. When such reactions have been found, they occur only in a very small percentage of the bereaved. Thus, the overall risk of reexperiencing a flood of negative emotions appears to be quite minimal.
Given that most people who have experienced the death of a loved one show few signs of distress or depression, many bereaved individuals may need no particular advice or help. The few who experience intense and lasting despair may benefit from interventions, although traditional grief counseling may not be the best choice. Instead people might consider seeking empirically supported psychotherapies for depression [see “The Best Medicine?” by Hal Arkowitz and Scott O. Lilienfeld; Scientific American Mind, October/November 2007].
That said, our conclusions are based largely on studies of Caucasian American widows and widowers. We cannot say for sure that they extend to people of all ages, ethnicities and genders. In addition, reactions to a loss may depend on a person’s relationship to the deceased—be it a parent, sibling or child—as well as whether the death was sudden, violent or drawn out. The consequences of these varying perspectives and circumstances have yet to be carefully explored.
Nevertheless, we can confidently say that just as people live their lives in vastly different ways, they cope with the death of others in disparate ways, too. Despite what some pop-psychology gurus tell us, grief is not a one-size-fits-all experience
True sufferers are often troubled—and yet time and treatment can often improve their lives
This past June renowned clinical psychologist Marsha M. Linehan of the University of Washington made a striking admission. Known for her pioneering work on borderline personality disorder (BPD), a severe and intractable psychiatric condition, 68-year-old Linehan announced that as an adolescent, she had been hospitalized for BPD. Suicidal and self-destructive, the teenage Linehan had slashed her limbs repeatedly with knives and other sharp objects and banged her head violently against the hospital walls. The hospital’s discharge summary in 1963 described her as “one of the most disturbed patients in the hospital.” Yet despite a second hospitalization, Linehan eventually improved and earned a Ph.D. from Chicago’s Loyola University in 1971.
Many psychologists and psychiatrists were taken aback by Linehan’s courageous admission, which received high-profile coverage in the New York Times. Part of their surprise almost surely stemmed from an uncomfortable truth: people with BPD are often regarded as hopeless individuals, destined to a life of emotional misery. They are also frequently viewed as so disturbed that they cannot possibly achieve success in everyday life. As a consequence, highly accomplished individuals such as Linehan do not fit the stereotypical mold of a former BPD sufferer. But as Linehan’s case suggests, much of the intense pessimism and stigma surrounding this disorder are unjustified. Indeed, few psychological disorders are more mischaracterized or misunderstood.
New York psychoanalyst Adolf Stern coined the term “borderline” in 1938, believing this condition to lie on the murky “border” between neurosis and psychosis. The term was a misnomer because BPD bears little relation to most psychotic disorders. The name may have perpetuated a widespread misimpression that the disorder applies to people on the edge of psychosis, who have at best a tenuous grasp of reality. Not surprisingly, the popular conception of BPD, shaped by such films as the 1987 movie Fatal Attraction (featuring actress Glenn Close as a woman with the condition), is that of individuals who often act in bizarre and violent ways.
An error committed by some clinicians is presuming that patients who do not respond well to treatment or who are resistant to therapists’ suggestions are frequently “borderlines.” Some mental health workers even seem to habitually attach the label “borderline” to virtually any client who is extremely difficult to deal with. As Harvard University psychiatrist George Valliant observed in a 1992 article, the BPD diagnosis often reflects clinicians’ frustrated responses to challenging patients.
In reality, BPD is meant to apply to a specific subgroup of individuals who are emotionally and interpersonally unstable. Indeed, Linehan has argued that a better name for the condition is “emotion dysregulation disorder.” Much of the everyday life of individuals with BPD is an emotional roller coaster. Their moods often careen wildly from normal to sad or hostile at the slightest provocation. As Linehan pointed out in a 2009 interview with Time magazine, “Borderline individuals are the psychological equivalent of third-degree-burn patients. They simply have, so to speak, no emotional skin.” Their perceptions of other people are inconsistent, and they often vacillate between worshipping their romantic partners one day and detesting them the next. Their identity is similarly unstable; patients may lack a clear sense of who they are. And their impulse control is poor; they are prone to explosive displays of anger toward others—and themselves. [For more on the symptoms, causes and treatment of BPD, see “When Passion Is the Enemy,” by Molly Knight Raskin; Scientific American Mind, July/August 2010.]
Further fuelling the stigma attached to BPD is the assumption that nearly all individuals who engage in self-cutting, such as wrist slashing, are so-called borderlines. In fact, in a 2006 study of 89 hospitalized adolescents who engaged in cutting and related forms of nonsuicidal self-injury, Harvard psychologist Matthew Nock and his colleagues found that 48 percent did not meet criteria for BPD. The lion’s share of these individuals exhibited other personality disorders, such as avoidant personality disorder, which is associated with a pronounced fear of rejection.
Once Borderline Always Borderline?
Two allied myths about BPD are that patients virtually never improve over time and are essentially untreatable. Yet a number of recent studies indicate that many patients with BPD shed their diagnoses after several years. In a 2006 investigation, for example, psychologists C. Emily Durbin and Daniel N. Klein, both then at Stony Brook University, found that although 16 percent of 142 psychiatrically disturbed adults initially met criteria for BPD, only 7 percent did after a decade. Moreover, the average levels of BPD symptoms in the sample declined significantly over time. Work by psychologist Timothy J. Trull and his colleagues at the University of Missouri–Columbia similarly suggests that many young adults who display some features of BPD do not exhibit these features after only a two-year period, indicating that early signs of BPD often abate.
BPD is not easy to treat. Yet Linehan has shown that an intervention she calls “dialectical behavior therapy” (DBT) is modestly helpful to many sufferers of the condition. DBT encourages clients to accept their painful emotions while acknowledging that they are unhealthy and need help. It teaches patients specific coping skills, such as mindfulness (observing their own thoughts and feelings nonjudgmentally), tolerating distress and mastering negative emotions. Controlled studies, reviewed by Duke University psychologist Thomas R. Lynch and his colleagues in 2007, indicate that DBT somewhat reduces the suicidal and self-destructive behaviors of patients. Lynch and his collaborators also found that DBT may lessen feelings of hopelessness and other symptoms of depression. Still, DBT is not a panacea, and no clear evidence exists that DBT can stabilize patients’ identity or relationships. Preliminary but promising data suggest that certain medications, including such mood stabilizers as Valproate, can alleviate the interpersonal and emotional volatility that characterize BPD, according to a 2010 review by psychiatrist Klaus Lieb of University Medical Center in Mainz, Germany, and his colleagues.
A Continuing Challenge
Not all BPD patients improve on their own or with treatment, and even those who do typically continue to battle the demons of emotional and interpersonal volatility. Nevertheless, the extreme negative views of this condition are undeserved, as is the mislabeling of a wide swath of the psychiatric population as borderline. It is also undeniable that many clinicians must become more judicious in their use of the BPD label and avoid attaching it to virtually any patient who is oppositional or unresponsive to treatment.
Fortunately, there is room for cautious optimism. As psychiatrist Len Sperry of Barry University noted in a 2003 review, BPD is the most researched of all personality disorders, a fact that remains true today. The fruits of that work promise to yield an improved understanding of BPD, which may reduce the stigma surrounding this widely misunderstood diagnosis. If so, perhaps the day will soon come when successful people who once struggled with BPD, such as Marsha Linehan, are no longer perceived as exceptions that prove the rule.