Sunday, April 1, 2012

Grief versus Depression: The American Psychiatric Association Responds

Grief versus Depression: The American Psychiatric Association Responds

In response to my open letter to the APA, Dr. John Oldham returned a polite but topical response to my concerns, assuring me of our "mutual goals" to best serve grieving individuals. 

This response was sent today. Yes, you may share (no need to email and ask), and yes we will continue to encourage open dialogue about this issue.


American Psychiatric Association
Attention John Oldham, M.D.
1000 Wilson Boulevard
Arlington, VA 22209

April 1, 2012
Via email

Dear Dr. Oldham,

Thank you for your letter. We appreciate you taking the time to respond on behalf of the APA. However, your response raises additional questions regarding the proposal to remove the bereavement exclusion from the Major Depressive Disorder (MDD) diagnosis in DSM-5.

Bereavement, as you know, is a unique life event that occurs in the context of individual experiences such as the relationship to the deceased and whether the death was expected or not. Among bereaved parents, for example, there are many variables that affect the intensity and duration of grief, such as the degree and quality of attachment (Kreicbergs, Valdimarsdottir, Onelov, Henter, & Steineck, 2004), manner of death (Arnold, Gemma, & Cushman, 2005), religious affiliation (Wijngaards-de Meij et al., 2005), ethnicity (Laurie & Neimeyer, 2008), prior history of mental disorder (Hensley, 2006), concordant partner responses (Dyregrov & Dyregrov, 1999), and perceived level of social support (Mann, McKeown, Bacon, Vesselinov, & Bush, 2008; Cacciatore, Schnebly, & Froen, 2009). The current edition of the DSM fails to take many of these factors into consideration, and instead relies on an arbitrary two-month cutoff point before symptoms of grief contribute toward a diagnosis of MDD. However, it is well accepted that grief often lasts well beyond two months (i.e. Shuchter & Zisook, 1993), even under the best of circumstances, and that there is a significant overlap with depressive symptoms, such as sleep problems, fatigue, anhedonia, changes in appetite, and enduring emotional distress. In addition, it is not uncommon for bereaved parents to report suicidal ideation (Murphy, Tapper, Johnson, & Lohan, 2003; DeFrain, 1986; Qin & Mortenson, 2003).

Though studies have yielded various results, research suggests there may be important differences between what is currently classified as bereavement-related depression and non-bereavement-related depression. For instance, in one study (Gilman et al., 2011) bereavement-related depression was associated with fewer previous psychiatric problems, lower psychosocial impairment and service utilization, fewer depressive episodes, and a lower rate of subsequent psychiatric disorders than non-bereavement-related depression. There is also evidence to suggest that removing the bereavement exclusion will increase the rate of false positives for the MDD diagnoses among the bereaved, a trend that began with the change in criteria from DSM-III-R to IV (Wakefield, Schmitz, & Baer, 2011). Thus, removing the bereavement exclusion does not seem warranted, given the state of the current research. We believe that to do so would likely further obscure the differences in bereavement-related symptoms and increase the likelihood that bereaved individuals will be given a diagnosis of depression both prematurely and inappropriately.

In addition, there are gender disparities in the diagnosis of MDD which concern us. This proposed change stands to affect more women than men. Women report higher levels of distress and tend to be more emotionally expressive following a loss, typically the focus of grief measures (Dyregrov & Dyregrov, 1999). Previous research has also found that beginning in adolescence women are diagnosed with depression at a higher rate than men (Kessler, 2003; Nolen-Hoeksema & Girgus, 1994). We have serious concerns that the DSM already pathologizes characteristics more common in women and that the DSM-5 will exacerbate this trend.

Your response to our open letter states that the goal of the DSM-5 developers is to ensure that individuals diagnosed with bereavement-related depression receive treatment, but it is not clear what this treatment would entail. For example, studies have documented that psychotropic medication is the most frequent, and increasingly the sole, mode of treatment offered for various mental disorders (Mojtabai & Olfson, 2008; Olfson & Marcus, 2010), despite a growing body of research questioning the efficacy and safety of this approach (Kirsch & Sapirstein, 1998; Healy, 2003). Importantly, there is no sound empirical data supporting the effectiveness of such medications for grief, and in particular traumatic grief (Hensley, 2006). Preliminary research suggests that bereaved parents are often prescribed psychiatric medications shortly after the death of a child, sometimes even the same day, before criteria for a mental disorder could possibly have been met (Cacciatore & Thieleman, in press). We are very concerned that the DSM-5 will legitimize this trend despite the fact that this practice is not evidence-based.

For most people, no other loss is as painful and agonizing as the death of a child. Reactions to such a loss are typically intense, with evidence that symptoms of traumatic grief persist for a year or longer (Dyregrov & Matthiesen, 1991). In one study, 41% of parents, none of whom had a history of any mental disorder, showed significant levels of grief-related separation distress an average of 4.5 years following the death of their child (McCarthy et al., 2010). Another study found it took about nine years following the death of a child for loss-related symptoms to fully abate (Kreicbergs et al., 2004). Regardless of symptom levels, it is not unusual for grief following the death of a child to last a lifetime and to change in intensity over time. In one study (Arnold et al., 2005), 63.5% of parents reported that their grief continued an average of 24 years following the death of a child. Importantly, there were no differences in overall life satisfaction between these parents and those who felt their grieving process had ended. For the majority of the bereaved parents, intense grief does not indicate pathology; instead continued grieving represents a way to maintain a connection to the deceased child (Arnold et al., 2005). The experiences of bereaved parents provide an example of how the resolution of intense symptoms within two months, not to mention two weeks, is an unreasonable expectation. These types of arbitrary conjectures challenge what it means to be human and to love deeply.

The DSM-III-R allowed one year for the bereavement exclusion. Overall, DSM-III-R criteria have been shown to yield a lower rate of false positives and to do a better job of distinguishing complicated from uncomplicated bereavement than does DSM-IV (Wakefield et al., 2011). The removal of the bereavement exclusion entirely is likely to increase the trend toward including lower levels of bereavement-related distress under the MDD diagnosis, result in a high rate of false positives, and contribute to the pathologizing of normal grief reactions. With this in mind, rather than removing the bereavement exclusion, a more appropriate move may be to return to the DSM-III criteria, in which it is implied that a full year following a loss should be allowed before a diagnosis of MDD is made. Based on the available research outcomes, we would not oppose such a move.

We want to address your assertion that some grieving individuals do need treatment. We agree that sensitive and compassionate support and professional help should be available to anyone who needs and desires it. However, we are not comfortable assigning a label of a mental disorder simply to allow someone to obtain insurance reimbursement for such help. The DSM fails to recognize that there are legitimate forms of suffering that are not caused by a mental disorder and instead seems intent on labeling normal, if intense and enduring, distress as pathological. 

If the committee for DSM-5 decides to remove the bereavement exclusion, we expect such a move will indeed be based on the most rigorous available science, as mentioned in your letter. We would expect this to include sound empirical evidence and thorough field-testing to justify this change and predict its likely effect on the individuals it is intended to help. We join other voices in asking for both transparency and an external review of the process. An evidence-based process such as this will also help allay concerns that the close ties between DSM-5 committee members and the pharmaceutical industry are not exerting an undue influence on decisions.

We remain steadfast in the commitment to care for our families affected by a traumatic death. We will continue to rally support against the removal of the bereavement exclusion and will boycott the use of the DSM in this population if needed. We hope the DSM-5 committee will see fit to join us in doing what is right, even if it means standing up to insurance providers. We are open to joining with the APA and other organizations to lobby against exclusive policies which make it difficult to bill for grief counseling in the absence of a diagnosis of mental illness. We hope that DSM-5 will proceed with an open and transparent process, with the opportunity to appeal any decision made by the DSM-5 committee.

Very Sincerely Yours,

Joanne Cacciatore, PhD
MISS Foundation

Kara Thieleman, LMSW
MISS Foundation


Arnold, J., Gemma, B.P., & Cushman, L.F. (2005). Exploring parental grief: Combining quantitative and qualitative measures. Archives of Psychiatric Nursing, 19(6), 245-255. doi:10.1016/j.apnu.2005.07.008

Cacciatore, J., Schnebly, S., & Froen, J.F. (2009). The effects of social support on maternal anxiety and depression after stillbirth. Health and Social Care in the Community, 17(2), 167-176. doi:10.1111/j.1365-2524.2008.00814.x

Cacciatore, J., & Thieleman, K. (In press). Pharmacological treatment following traumatic bereavement: A case series. Journal of Loss and Trauma.

DeFrain, J.D. (1986). Stillborn: The Invisible Death. Lexington, MA: Rowman & Littlefield.

Dyregrov, A., & Dyregrov, K. (1999). Long-term impact of sudden infant death: A 12- to 15-year follow-up. Death Studies, 23(7), 635-661. doi:10.1080/074811899200812

Dyregrov, A., & Matthiesen, S.B. (1991). Parental grief following the death of an infant – A follow-up over one year. Scandinavian Journal of Psychology, 32(3), 193-207. doi:10.1111/j.1467-9450.1991.tb00869.x
Gilman, S.E., Breslau, J., Trinh, N., Fava, M., Murphy, J.M., & Smoller, J.W. (2011). Bereavement and the diagnosis of major depressive episode in the National Epidemiologic Survey on Alcohol and Related Conditions. Journal of Clinical Psychiatry, 73(2), 208-215. doi:10.4088/JCP.10m06080.
Healy, D. (2003). Lines of evidence on the risks of suicide with selective serotonin reuptake inhibitors. Psychotherapy and Psychosomatics, 72(2), 71-79. doi:10.1159/000068691

Hensley, P. (2006). Treatment of bereavement-related depression and traumatic grief. Journal of Affective Disorders, 92(1), 117-124. doi: 1.1016/j.jad.2005.12.041

Kessler, R.C. (2003). Epidemiology of women and depression. Journal of Affective Disorders, 74(1), 5-13. doi:10.1016/S0165-0327(02)00426-3

Kirsch, I., & Sapirstein, G. (1998). Listening to Prozac but hearing placebo: A meta-analysis of antidepressant medication. Prevention & Treatment, 1(2). doi:10.1037/1522-3736.1.1.12a

Kreicbergs, U., Valdimarsdottir, U., Onelov, E., Henter, J.I., & Steineck, G. (2004). Anxiety and depression in parents 4-9 years after the loss of a child owing to a malignancy: A population-based follow-up. Psychological Medicine, 34(8), 1431-1441. doi:10.1017/S0033291704002740

Laurie, A., & Neimeyer, R.A. (2008). African Americans in bereavement: Grief as a function of ethnicity. OMEGA, 57(2), 173-193. doi:10.2190/OM.57.2.d

Mann, J.R., McKeown, R.E., Bacon, J., Vesselinov, R., & Bush, F. (2008). Predicting depressive symptoms and grief after pregnancy loss. Journal of Psychosomatic Obstetrics & Gynecology, 29(4), 274-279. doi:10.1080/01674820802015366

McCarthy, M.C., Clarke, N.E., Ting, C.L., Conroy, R., Anderson, V.A., & Heath, J.A. (2010). Prevalence and predictors of parental grief and depression after the death of a child from cancer. Journal of Palliative Medicine, 13(11), 1321-1326. doi:10.1089/jpm.2010.0037

Mojtabai, R., & Olfson, M. (2008). National trends in psychotherapy by office-based psychiatrists. Archives of General Psychiatry, 65(8), 962-970. doi:10.1001/archpsyc.65.8.962

Murphy, S.A., Tapper, V.J., Johnson, L.C., & Lohan, J. (2003). Suicide ideation among parents bereaved by the violent deaths of their children. Issues in Mental Health Nursing, 24(1), 5- 25. doi:10.1080/01612840305307. 

Nolen-Hoeksema, S. & Girgus, J.S. (1994). The emergence of gender differences in depression during adolescence. Psychological Bulletin, 115(3), 424-443. doi:10.1037/0033-2909.115.3.424

Olfson, M., & Marcus, S.C. (2010). National trends in outpatient psychotherapy. American Journal of Psychiatry, 167(2), 1456-1463. doi:10.1176/appi.ajp.2010.10040570

Qin, P., & Mortensen, P.B. (2003). The impact of parental status on the risk of completed suicide. Archives of General Psychiatry, 60(8), 797-802. doi:10.1001/archpsyc.60.8.797

Shuchter, S.R., & Zisook, S. (1993). The course of normal grief. In M. Stroebe, W. Stroebe, & R. O. Hansson (Eds.), Handbook of bereavement: Theory, research, and intervention (pp. 23-43). New York: Cambridge University Press.

Wakefield, J.C., Schmitz, M.F., & Baer, J.C. (2011). Did narrowing the major depression bereavement exclusion from DSM-III-R to DSM-I increase validity? Journal of Nervous and Mental Disease, 199(2), 66-73. doi:10.1097/NMD.0b013e31820840c5

Wijngaards-de Meij, L., Stroebe, M., Schut, H., Stroebe, W., van den Bout, J., van der Heijden, P., & Dijkstra, I. (2005). Couples at risk following the death of their child: Predictors of grief versus depression. Journal of Consulting and Clinical Psychology, 73(4), 617-623. doi:10.1037/0022-006X.73.4.617

Related blogs: 

A personal story of loss and depression

Ethics and the DSM 5


Bug Family said...

Dear Joanne,

When I shared your initial post about the proposed change to DSM V, some responses were that of what if someone truly wants/needs that type of assistance, what's wrong?

My refutation was same as yours. First, the label shouldn't be there to obtain insurance approval/reimbursement among many many other reasons. Completely inappropriate and destructive. The second refutation was look at the research that you've done and what's been done before. While yes, maybe it helps others and that's fine, it's clear to me that in the majority of cases, it does way more harm than good and just masks and delays the pain.

Thank you always for your words and wisdom.

Marie said...

I have endured the harm one can endure being thrown into the mental health arena during bereavement of one year's duration following caregiving of my husband's complex medical issues ! Totally inappropriate diagnoses given to me, on disability where then what is suffered is loss of credibility with family and loss of career, relationships with former co-workers, financial downward spiral. If I feel ---- and I DO --- that being thrust into the mental health system after one year of losing my spouse was inappropriate and harmful, those who would be labeled MDD after two weeks into bereavement adjustments would suffer even more harm. It is totally bizarre ! I lost a very close girlfriend when I was 14, also, and because of Girl Scout leaders and all those in a small village, I gained from LOVE around me while grieving. They did not drug me up as they are doing to children now !! What is taking place pertaining to loss and natural, human feelings being called other-than-what-they-are MUST be stopped !! MCW

Loraine Ritchey said...

I have linked your thoughts to mine on my blog - I am appalled by the lack of human compassion APA are demonstrating by trying to pigeon hole those that have lost. I may be lost in grief but I haven't lost my mind

LW said...

Beautifully written. Eloquent and powerful. I especially appreciate the excellent citations and will continue to read and research material exploring the authentic expression of parental grief, particularly the more current studies regarding child death from cancer and lifelong traumatic grief. A deeper understanding, recognition, and acceptance (cultural and medical) of the truth about parental grief would effectively render any attempts to pathologize what is essentially the measure of the deepest love possible, moot.

I also feel strongly that this attempt to categorize grief as a mental illness/disorder is a way to manufacture and dispense medication. The so-called "treatment" for anything that is bracketed by a professional medical diagnosis (to optomize payment for services, aka drug therapy, rendered)opens the door for the drug companies to make billions. The "discussion" on the part of the "experts" has little to do with the emotional/psychological experiential reality of grieving, (or more importantly, any kind of verifiable science )and absolutely everything to do with profit, greed, and exploitation. This is purely an economic issue that benefits entire industries within the medical community.

Again, I am grateful for your sustained efforts in this area. Thank you for sharing such fine work.

Best, Lisa Wendell

Dr. Joanne Cacciatore said...

Thank you all for reading and for the many private messages. I continue to experience shared and profound sadness in hearing all the stories of loss and heartache...


The soul still sings in the darkness telling of the beauty she found there; and daring us not to think that because she passed through such tortures of anguish, doubt, dread, and horror, as has been said, she ran any the more danger of being lost in the night. Nay, in the darkness did she, rather, find herself.

--St. John, Dark Night of the Soul

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