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
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
Kara Thieleman, LMSW
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A personal story of loss and depression
Ethics and the DSM 5
A personal story of loss and depression
Ethics and the DSM 5