Wednesday, August 04, 2010

NPR - Is Emotional Pain Necessary? by Alix Spiegel

This story from NPR's Morning Edition poses some issues for me. I think grief is a good and necessary emotion - and I think that how grief expresses itself is unique to each person and each circumstance - not to mention each culture.

The move in the DSM-5 to put so many things on a spectrum is being pushed bu Big Pharma to loosen the diagnoses for various mental illness so that more of them can be treated with their magic pills (they want to remove "bereavement exclusion" from the major depression diagnosis so that they can medicate perfectly normal grief). This is rather than add the more needed complex grief diagnosis to the DSM-5 (see below).

In the winter of 1992, Theresa Smith took her 14-month-old daughter, Scarlett, to Arizona for an extended visit with family. One night, as they headed to bed, Theresa's mother made a declaration: She would watch the baby the next morning. Theresa should take the day for herself.

We know relatively little about whether the pain that follows a loss is necessary.

We know relatively little about whether the pain that follows a loss is, in a health sense, necessary.

The following morning, Theresa kissed her mother and child goodbye and headed off for a rare day of leisure. This was the era before cell phones, and Theresa wasn't able to call home. So it wasn't until later that afternoon when Theresa learned that her baby daughter had died — she had fallen into the pool in her mother's backyard and drowned shortly after Theresa pulled out of her mother's driveway.

Scarlett was Theresa's only child, the center of her life, and so the months that followed were close to unbearable. Theresa cried every day. She considered suicide. She could not sleep. And, though she went back to graduate school, she found it hard to focus.

The nights were the worst. Theresa would go to the cemetery and sit, banging her head against Scarlett's headstone until her face was covered with blood. Eventually, the husband of a good friend started coming to retrieve her after he closed his restaurant for the night. He would take her back to her apartment, a place no safer from pain.

"At one point," Theresa says, "I wanted to smell Scarlett. And I looked and I went around the apartment, and I looked for her fingerprints, little spots where she had spit up milk. I just looked for her everywhere. She was all I wanted."

Today, Theresa is doing well. And she looks on this period of her life, the months of incredible pain and suffering, with a kind of distant pragmatism.

"It's a normal process of letting go of your child," she says. "You've got to go through all of this."

More On Grieving

But is what Theresa went through a normal part of grieving, or did the death of her child bring on a mental disorder — major depression — that could have been, perhaps should have been, aggressively treated?

Change In Guidelines

Earlier this year, the American Psychiatric Association released a rough draft of its new Diagnostic and Statistical Manual of Mental Disorders, or DSM. It's a big book that lists all the mental disorders doctors can use to diagnose mental illness. One of the changes they're proposing is causing controversy.

Traditionally, the manual has warned doctors away from diagnosing major depression in people who have just lost a loved one in what's called "bereavement exclusion." The idea was that feelings of intense pain were normal, so they shouldn't be labeled as a mental disorder.

But the new DSM changes this. Buried in the pages is a small but potentially potent alteration that has implications not only for people like Theresa, but ultimately for the way that we think about and understand the emotion of pain.

The DSM committee removed the bereavement exclusion — a small, almost footnote at the bottom of the section that describes the symptoms of major depression — from the manual.

The Difference

Dr. Kenneth Kendler, who is on the committee that decided to make this change, says it's not that the committee feels everyone who has a loss should immediately be diagnosed with depression. For Kendler, there is a clear, bright line between normal grief and clinical depression. Grief is OK — depression is not. Depression, by definition, is dangerous and should be treated. Grief is normal and should not.

So how, exactly, does Kendler define grief?

"Typically, modest amounts of upset are fairly common — sometimes difficulty sleeping, crying over memories of the loved one," Kendler says.

According to Kendler, people in grief also often lack concentration. They frequently lose sleep, lose appetite, lose energy.

The Diagnostic and Statistical Manual of Mental Disorders
Ellen Webber/NPR

The Diagnostic and Statistical Manual of Mental Disorders, or DSM, is the book that lists all the mental disorders doctors can use to diagnose mental illness.

Now technically, these are also symptoms of depression. So what's the difference between grief and depression in Kendler's view? Kendler says that in grief, the symptoms are less severe, and also, the acute pain doesn't last as long.

"Usually for days at a time. Not for weeks," Kendler says. There are "a few days of acute upset and then a much longer period of the longing, the tearfulness. But typically sleep, appetite, energy, concentration come back to normal more quickly than that."

In fact, in the new manual, if symptoms like these persist for more than two weeks, the bereaved person will be considered to have a mental disorder: major depression. And treatment, either therapy or medication, is recommended.

Now according to Kendler, this change will affect a small number of people — less than 30 percent of the bereaved. But Holly Prigerson, a researcher at Harvard University who studies bereavement, says that while there's no good research on what percentage of people will meet the criteria for depression after a loss, it's clear that most experience depressive symptoms far beyond two weeks.

What underlies a lot of this discussion is: Is it harmful to interrupt a normal grief process by medicating?

"What we found," Prigerson says, "is that when you follow people — for example, between zero and six months post-loss — their depression symptom levels actually increase over time and peak at about six months post-loss."

Because grief and depression look so much alike, Prigerson says, she worries that people who are suffering from normal grief will be told that they are sick when they are not, and encouraged to treat their symptoms when they don't need to.

That is potentially a problem, Prigerson says, because we don't know whether the pain of normal grief actually helps people to process their loss.

What We Don't Know

In some ways, it is shocking what we don't know about grief. Every day in America people die, leaving loved ones behind to struggle with the consequences. Yet we know relatively little about whether the pain that follows a loss is, in a health sense, necessary.

As Prigerson says, "What underlies a lot of this discussion is: Is it harmful to interrupt a normal grief process by medicating?"

I'd rather make the mistake of calling someone depressed who may not be depressed than missing the diagnosis of depression, not treating it, and having that person kill themselves.

That is, does going through intense emotional pain make you emotionally healthier later by allowing you to emotionally process your loss?

Kendler says no.

"Early on, there used to be the thought that there was this grief work, and that if you did not demonstrate lots of upset acutely after someone died, that later on there would be more distress," Kendler says. "But research has shown clearly that that concept is false."

Kendler points to research showing that people who are doing well two weeks after a loss also seem to be doing well one year later.

But Prigerson and several other researchers don't agree that the research is clear. They argue that at this point, we just don't know whether emotional pain in the wake of death allows you to come to terms with your loss, or if you can be just fine without it.

While Normal, Grief Is Treatable

But to Dr. Sid Zisook, one of the psychiatrists who has argued for removal of the bereavement exclusion, this academic question doesn't matter. The dangers of depression, he says, are perfectly clear.

"I'd rather make the mistake of calling someone depressed who may not be depressed, than missing the diagnosis of depression, not treating it, and having that person kill themselves," Zisook says.

And just because pain after loss is normal, Zisook says, doesn't mean you shouldn't treat it.

"I mean, [pain] is a normal consequence of breaking a bone. But that doesn't mean that we don't treat the pain. We treat the pain vigorously," Zisook says.

Medicalizing Our Experiences

But for some people, the real issue raised by the bereavement exclusion is philosophical — or maybe the better word is existential. Dr. Allen Frances, the famous psychiatrist and a former editor of the DSM, says that more and more, psychiatry is medicalizing our experiences. That is, it is turning emotions that are perfectly normal into something pathological.

Over the course of time, we've become looser in applying the term 'mental disorder' to the expectable aches and pains and sufferings of everyday life.

"Over the course of time, we've become looser in applying the term 'mental disorder' to the expectable aches and pains and sufferings of everyday life," Frances says. "And always, we think about a medication treatment for each and every problem."

From Frances' perspective, if you can't feel intense emotional pain in the wake of the death of your child without it being categorized as a mental disorder, then when in the course of human experience are you allowed to feel intense emotional pain for more than two weeks?

This perspective is also shared by Theresa Smith, the woman who lost her daughter 20 years ago.

"I grieved her just as hard as I loved her," Smith says. "I had to. It wouldn't have meant anything if I hadn't."

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OK, then, since 1997 (at least, probably longer) there has been and effort to get a new category called complex grief into the DSM - then it was the DSM-IV-TR. But surprise, surprise, it has not made it into the DSM, and it won't make it into the DSM-5, despite another paper in 2009 - see below.

Diagnostic criteria for complicated grief disorder

MJ Horowitz, B Siegel, A Holen, GA Bonanno, C Milbrath and CH Stinson
Langley Porter Psychiatric Institute, University of California, San Francisco 94143-0984, USA.
Am J Psychiatry 1997; 154:904-910

OBJECTIVE: Some prolonged and turbulent grief reactions include symptoms that differ from the DSM-IV criteria for major depressive disorder. The authors investigated a new diagnosis that would include these symptoms. METHOD: They developed observer-based definitions of 30 symptoms noted clinically in previous longitudinal interviews of bereaved persons and then designed a plan to investigate whether any combination of these would serve as criteria for a possible new diagnosis of complicated grief disorder. Using a structured diagnostic interview, they assessed 70 subjects whose spouses had died. Latent class model analyses and signal detection procedures were used to calibrate the data against global clinical ratings and self-report measures of grief-specific distress. RESULTS: Complicated grief disorder was found to be characterized by a smaller set of the assessed symptoms. Subjects elected by an algorithm for these symptoms patterns did not significantly overlap with subjects who received a diagnosis of major depressive disorder. CONCLUSIONS: A new diagnosis of complicated grief disorder may be indicated. Its criteria would include the current experience (more than a year after a loss) of intense intrusive thoughts, pangs of severe emotion, distressing yearnings, feeling excessively alone and empty, excessively avoiding tasks reminiscent of the deceased, unusual sleep disturbances, and maladaptive levels of loss of interest in personal activities.

Emphasis added.

Here is the most recent article I can find in Google - from last year, that defines some of the diagnostic criteria for complex grief. In reality, many therapists already treat this disorder - and not being psychiatrists, they do it without drugs (since they don't seem to help anyway).

Zisook, S & Shear, K. (2009). Grief and bereavement: what psychiatrists need to know. World Psychiatry. June; 8(2): 67–74.

Complicated grief, a syndrome that occurs in about 10% of bereaved people, results from the failure to transition from acute to integrated grief. As a result, acute grief is prolonged, perhaps indefinitely. Symptoms include separation distress (recurrent pangs of painful emotions, with intense yearning and longing for the deceased, and preoccupation with thoughts of the loved one) and traumatic distress (sense of disbelief regarding the death, anger and bitterness, distressing, intrusive thoughts related to the death, and pronounced avoidance of reminders of the painful loss) 10. Characteristically, individuals experiencing complicated grief have difficulty accepting the death, and the intense separation and traumatic distress may last well beyond six months 1, 4. Bereaved individuals with complicated grief find themselves in a repetitive loop of intense yearning and longing that becomes the major focus of their lives, albeit accompanied by inevitable sadness, frustration, and anxiety. Complicated grievers may perceive their grief as frightening, shameful, and strange. They may believe that their life is over and that the intense pain they constantly endure will never cease. Alternatively, there are grievers who do not want the grief to end, as they feel it is all that is left of the relationship with their loved one. Sometimes, people think that, by enjoying their life, they are betraying their lost loved one. Maladaptive behaviors consist of over-involvement in activities related to the deceased, on the one hand, and excessive avoidance on the other. Preoccupation with the deceased may include daydreaming, sitting at the cemetery, or rearranging belongings. At the same time, the bereaved person may avoid activities and situations that remind them that the loved one is gone, or of the good times they spent with the deceased. Frequently, people with complicated grief feel estranged from others, including people that used to be close.

Risk factors for complicated grief have not been well studied. However, individuals who have a history of difficult early relationships and lose a person with whom they had a deeply satisfying relationship seem to be at risk. Additionally, those with a history of mood or anxiety disorders, those who have experienced multiple important losses, have a history of adverse life events and whose poor health, lack of social supports, or concurrent life stresses have overwhelmed their capacity to cope, may be at risk for complicated grief 8, 10. An interesting unanswered question is why one person develops complicated grief, while another suffers from major depression or post-traumatic stress disorder in the wake of a loss.
Complicated grief can be reliably identified using the Inventory of Complicated Grief (ICG, 14). It is indicated by a score ≥ 30 on the ICG at least six months after the death. It is associated with significant distress, impairment, and negative health consequences 14, 15. Studies have documented chronic sleep disturbance 16, 17 and disruption in daily routine 18. People with complicated grief have been found to be at increased risk for cancer, cardiac disease, hypertension, substance abuse, and suicidality 19. Among bereaved spouses over the age of 50, 57% of those with complicated grief had suicidal ideation compared to the remaining 24% who did not endorse. Among adolescent friends of adolescent suicides, young adults with complicated grief were 4.12 times more likely to endorse suicidal thoughts, controlling for syndromal depression, than subjects who did not have syndromal level complicated grief 20. In studies of clinical populations, complicated grief was associated with a high rate of suicidal ideation, a history of suicide attempts and indirect suicidal behavior, not explained by co-occurring major depression 19, and with elevated rates of lifetime suicide attempts in bipolar patients 21. Once established, complicated grief tends to be chronic and unremitting. Clearly, complicated grief must be taken seriously and treated appropriately.

Psychotropic medications and standard grief-focused supportive psychotherapies appear to have little impact on this syndrome. By contrast, a targeted intervention, complicated grief treatment (CGT), has demonstrated significantly better outcomes than standard psychotherapy in treating this syndrome 21. CGT combines cognitive behavioral techniques with aspects of interpersonal psycho-therapy and motivational interviewing. The treatment includes a dual focus on coming to terms with the loss and on finding a pathway to restoration. It includes a structured exercise focused on repeatedly revisiting the time of the death as well as gradual re-engagement in activities and situations that have been avoided. Personal goals are addressed and discussed. A randomized controlled trial comparing CGT to standard interpersonal psychotherapy showed that the former performed better 22. Participants were permitted to enter the trial on medication that had been prescribed for more than 3 months if they still met criteria for complicated grief. Compared to those not already taking medication, previously treated individuals appeared to derive modest benefits from the addition of psychotherapy and proved to be more likely to complete a full course of CGT. Given these findings and the frequent occurrence of lifetime mood and anxiety disorders in individuals with complicated grief, it appears likely that combination treatment, including antidepressant medication and targeted psychotherapy, may be the most effective treatment approach 23. Prospective randomized controlled trials examining the role of pharmacotherapy for the treatment of complicated grief with and without concomitant psychotherapy are indicated.

After completing their education and formal training, psychiatrists may not be fully prepared to handle some of the most common clinical challenges they will face in practice. Diagnosing and treating complicated grief and bereavement related major depression will undoubtedly rank high on the list of such challenges. Both conditions overlap with symptoms found in ordinary, uncomplicated grief, and often are written off as “normal” with the assumption that time, strength of character and the natural support system will heal.

It is important to realize that, while each individual grief process is unique, there is a form of grief that is disabling, interfering with function and quality of life. This prolonged, complicated grief response tends to be chronic and persistent in the absence of targeted interventions, and may be life threatening. Complicated grief usually responds well to a specific psychotherapy, perhaps best when administered in combination with antidepressant medication. In addition, with patient suicides being a commonplace occupational risk for psychiatrists, it is essential for them to recognize their own vulnerabilities to the personal assaults that often accompany such losses, not only for their own mental health and well-being, but also to provide the most sensitive and enlightened care to their patients.
Emphasis added.

Work has been done to verify this diagnosis as well, so there is a metric for identifying it in those 10% who are likely to experience this form of grief.

Prigerson HG, Horowitz MJ, Jacobs SC, Parkes CM, Aslan M, et al. (2009) Prolonged Grief Disorder: Psychometric Validation of Criteria Proposed for DSM-V and ICD-11. PLoS Med 6(8): e1000121. doi:10.1371/journal.pmed.1000121

Assessment of Symptoms of PGD

Symptoms of PGD were assessed with the rater version of the Inventory of Complicated Grief—Revised (ICG-R) [34][36],[40],[41],[45],[59], a structured interview designed to assess a wide variety of potential PGD symptoms, using five-point scales to represent increasing levels of symptom severity. The ICG-R is a modification of the Inventory of Complicated Grief (ICG) [15] that includes all the symptoms proposed by the consensus panel [23] and additional symptoms enabling the testing of alternative diagnostic algorithms [22]. The ICG-R and the original ICG have both proven highly reliable (e.g., [15],[25],[36],[41]) (e.g., Cronbach's α>0.90; test-retest reliability coefficient = 0.80 [15]) and to possess criterion validity [15],[21],[24],[25],[45]. Based on prior work [23],[59], a symptom was considered present if rated 4 or 5, and absent if rated 1, 2, or 3, on its five-point scale. Interviewers were trained by project investigators (HGP, SJC) to provide a separate evaluation of whether or not the participant represented a current “case” of PGD.

And their proposed diagnostic criteria based on several rounds of refinement:

The ultimate consensus criteria set for PGD proposed for DSM-V and ICD-11 appears in Table 3. Diagnoses of PDG based on these criteria demonstrated convergent validity with respect to the diagnostic algorithm proposed by Horowitz et al. [22] (κ = 0.69) and the rater diagnosis of PGD (κ = 0.52), and discriminant validity with respect to other mood and anxiety disorders (Φ with MDD = 0.48; PTSD = 0.23; GAD = 0.21).

You can view Table 3 because it's too small to read it I post it here. This last bit comes from the discussion:

Our results indicate that PGD meets DSM criteria for inclusion as a distinct mental disorder on the grounds that it is a clinically significant form of psychological distress associated with substantial disability. Findings from this field trial of consensus criteria for PGD confirm prior work demonstrating the distinctiveness of the symptoms of PGD (e.g., [15],[18][20],[22],[26],[27],[29][31]). The proposed diagnostic algorithm for PGD has quite incomplete overlap with established mental disorders commonly occurring among recently bereaved individuals (MDD, PTSD). Further, our results indicate that in the absence of mental disorders found in DSM-IV (e.g., MDD), the proposed algorithm for PGD predicts substantial dysfunction—impairment missed by the current psychiatric diagnostic system. Because standard treatments for depression have not always proven effective for the reduction of PGD [49][52], whereas psychotherapies designed specifically to ameliorate symptoms of PGD have demonstrated efficacy [53],[54], there exists a need for the accurate detection and specialized treatment of PGD.

Although the YBS data may appear unrepresentative of the general US population, a comparison with US Census 2005 [48],[69],[70] data reveals similarities with the US widowed population. For example, the YBS sample was 73.7% female compared with 80.7% of the US widowed population and 95.3% white compared with 80.2% of the US widowed population. Like the population of US widowed individuals, the YBS sample is disproportionately female, white, and elderly. Compared with the US widowed population, however, the study participants were somewhat younger, more likely to be male, and a higher proportion was white and better educated. Future research should replicate the analyses in older, nonwhite, less-educated widowed samples.

Although there is a need to confirm the results in nonwidowed bereaved persons, we consider widowhood following an older spouse's death from natural causes to be the prototypical case of bereavement. In the US, 84% of all deaths occur among individuals who are 65 y and over [71], and less than 7% of deaths are from unnatural causes (e.g., unintentional injuries, assault, suicide) [72]. Given that in later life one's spouse/partner is the person most likely to be adversely affected by the death, a sample of older widowed persons surviving the death of a spouse from natural causes provides an important sample in which to develop and test criteria for a bereavement-related mental disorder. In addition, the symptoms retained were only those proven to be invariant across gender, time from loss, and kinship groups (e.g., IRT DIF analysis removed items that performed differently based on whether or not the deceased was a spouse) and a distinct advantage of IRT is that it produces generalizable results regardless of sample characteristics [66]. Thus, the results are expected to be generalizable to most bereaved individuals. The generalizability of the results reported here is not intended to deny the value in further confirmation of the findings in nonwidowed, more traumatically bereaved, younger, less-educated, more male, and ethnically and geographically diverse samples, and the need to examine longer-term bereavement outcomes (e.g., 3, 5, and 10 y post-loss).

Although the sample size may appear modest, the study was designed and appropriately powered to evaluate a wide range of potential diagnostic criteria (i.e., the first phases of the analyses used the full sample [n = 291]). The YBS PGD prevalence rate was obtained in a resilient community sample in which rates of mental illness were lower than those that have been reported in other bereavement studies (e.g., 9% for MDD compared with 22% in the first year of widowhood) [73]. The only analyses limited by statistical power would have been the predictive validity analyses. Here, we found large, statistically significant effects suggesting the conservative nature of our estimates of functional impairment associated with PGD.

You can read the whole article at PubMed.

In my opinion, we would do much better to be correct as possible and accurate as science will allow in our diagnostic criteria, and not be influenced by Big Pharma to make all grief treatable with an antidepressant - that is stupid and criminal in my opinion.

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