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
References
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Related blogs:
A personal story of loss and depression
Ethics and the DSM 5
