Wednesday, October 31, 2012

Revolution on Standby: Bereavement and the DSM-5

“Do not close your eyes before suffering. Find ways to be with those who are suffering by all means... awaken yourself and others to the reality of suffering in the world.”
—Guatama Buddha

As the presidential election approaches, there is a quiet revolution on standby... 

We will not remain silent on behalf of the suffering. 

American Psychiatric Association
Dilip Jeste, M.D.
1000 Wilson Blvd
Arlington, Va 22209

Dear Dr. Jeste,

On behalf of the MISS Foundation's 75 worldwide chapters and our many constituents, our board of directors, and our advisory board, we write to publicly and emphatically oppose the proposed removal of the bereavement exclusion in the Diagnostic and Statistical Manual version 5 (DSM-5). 

After lengthy evaluation by many on our clinical team and by the experts, our bereaved parent members, we have concluded that there is no empirical standing for the change, and this proposal not only contradicts good common sense but also rests on weak scientific evidence. In addition, we feel that bereaved parents are at an increased risk of being misdiagnosed with Major Depressive Disorder.  The literature is clear: long-term psychological distress is common in this population and other populations suffering traumatic deaths. The psychological distress in the bereaved parent population endures for much longer and is much more intense that other types of bereavement, yet this is congruent and appropriate in anachronistic loss (see Sanders, 1979; DeFrain, 1986; Qin & Mortenson, 2012; Cacciatore, Lacasse, Lietz, & McPherson, in press). Thus, we oppose its pathologization. As an advocacy organization, we feel that the DSM 5 proposal is radical, unnecessary, challenges what it means to be human, and is a dangerous move for our families who are already vulnerable to inappropriate and misguided psychiatric care. 

The DSM-5 would require a distinction between normal grief and depression shortly after the death of a loved one. This is often impossible to discern for even the most experienced clinicians.  This then increases the likelihood of false positives- and may cause further harm to an already vulnerable population. The proposed footnote will never satisfy our concerns nor provide enough assurance for the protection of our very vulnerable grieving families.

Should the DSM-5 stubbornly ignore the evidence and the mounting professional and public opposition, our only alternative will be to call for more direct action. We will join a concerted boycott against the use of the DSM-5 in treating bereaved families facing the death of a child.  We will make our outcry very public and warn our families and clinicians worldwide of these dangers. 

On behalf of hundreds of thousands of bereaved people around the world, we implore you to reverse this poorly conceived and unnecessary decision.  We await your response.

Barry Kluger, Chief Executive Officer                                      
Joanne Cacciatore, PhD, Chairman
Kelli Montgomery, Executive Director


If you'd like to understand more about this history of this open letter, please follow the links below in order:






6.  We also have some agreement from within the circle of psychiatry:

A letter from my colleagues at GRI to the APA:

The Grief Recovery Institute Educational Foundation, Inc.
P.O. Box 6061-382 - Sherman Oaks, CA 91413
Phone: 818-907-9600 Ext 12 - Fax: 818-907-9329

November 2, 2012

American Psychiatric Association
Dilip Jeste, M.D.
1000 Wilson Blvd.
Arlington, VA 22209
And via email:

Dear Dr. Jeste,

We write to you as the principals of The Grief Recovery Institute Educational Foundation and on behalf of its extended family of 5000 trained Grief Recovery Specialists in the United States and around the world; and, as the keepers of a sacred trust with 500,000 people connected to our organization. We are aghast at the proposed deletion of the Bereavement Exclusion from the DSM5. We also write to you on behalf of the many millions of “grievers-to-be” who will be incorrectly diagnosed and buried under an avalanche of inappropriate pharmaceutical intervention.

Grievers have a difficult enough time in our society which consistently tells them not to feel bad or sad when those feelings are the primary and logical emotions attached to the death of someone meaningful to them. It gets worse when medical and mental health professionals are encouraged to pathologize normal grief as MDE. If that is allowed to happen, a perilous line will have been crossed. [Note: We believe that any good practitioner will already have identified “at risk” patients whose reaction to a death might plunge them into an pre-existing depressive condition, and react appropriately.]

Three critical points:
  1. We understand that the field trials used to justify many of the proposed changes in DSM5 are deficient. That not only represents “bad science” but also weakens the APA’s increasingly shaky foundation. Credibility being what it is, you jeopardize the legacy of the prior DSMs and threaten to commit unintentional organizational suicide. Once you lose your cred, you’ll never get it back. And with it will go millions of dollars from non-sales of the book no one will wantor need.
  2. The proposed footnote, while noble, does nothing to ameliorate our fears of misuse and misdiagnosis by untrained and unskilled doctors with nothing more than your criteria for a time-based schema to distinguish between normal grief and MDE.
  3. We don’t know the level or degree to which those who have authored the Bereavement Exclusion deletion have had direct interactive experience with grieving people, but without being mean-spirited we can only guess it is minimal at best, and academic—not reality-based—at worst.

With 35 years in the field with many thousands of real grievers, we are the ones in the trenches. We are co-authors of The Grief Recovery Handbook and When Children Grieve [both from HarperCollins].

This letter is not a threat, but it does contain a promise.  If you insist on pressing forward on this collision course with catastrophe regarding the Bereavement Exclusion, we  will spare no effort to make it known that you have breeched your pledge to “do no harm.”


Russell Friedman
Executive Director

and for

John W. James


Karla Helbert said...

Of course, as a bereaved mother, a licensed clinician, and a long-time member of the MISS Foundation, I stand firmly behind our stance. We must continue to oppose this insensitive, dangerous attempt to pathologize grief. Our grief is a normal and natural reaction to the death of a deeply loved one. What we need is for grieving people to be witnessed in their journey, supported, loved, shown compassion, care and empathy. Not diagnosed with a mental illness that they do not have and given medication.
Thank you, thank you.

Bug Family said...

Echoing Karla...Thank you. Thank you. For giving us bereaved a voice.

We are NOT mentally ill.

We are sad, yes. Beyond words and explanation.

We do BEAUTIFUL things in memory of our beloved children, but we want them back. Every moment of every hour of every day, year, decade. We want them back!

And it is really just that simple.

Please not only HEAR us, but LISTEN. Listen with your heart.


Dr. Joanne Cacciatore said...

Thank you dear Karla and MOJ for your heartfelt thoughts... We all wish your children were here and that you never had to know the collective "us."


Amelia's Mom said...

Thank you so much for taking a stand for us, with us.

Grief is a normal reaction to a profound loss of a loved one and should be accepted as such by those who are lucky enough not to know it first hand.

Dr. Joanne Cacciatore said...

Indeed, Amelia's mom. We will always do what is right and always have, in our hearts, the best interests of our families above all else... Thank you for reading!

Webmaster "M" said...

Dr. Jo, Your Stand will always be my Stand, Being part of the "collective us" has been one of the most rewarding even with the sorrowful experiences that brought us all together.Please except the Publisher, The world needs to know YOU also...This is a favorite quote I have found

Grief is not a disorder, a disease or a sign of weakness. It is an emotional, physical and spiritual necessity, the price you pay for love. The only cure for grief is to grieve. - Earl Grollman

Saying Thank to You is Never seems Enough...But THANK YOU

Dr. Joanne Cacciatore said...

Thank you Mr S. thank you.

Unknown said...

There are no words to tell you how I feel after reading your post. I full of life and very happy until my firstborn son was suddenly stillborn fullterm in 1975. The day after his stillbirth, my husband's mother told me to never speak of my son again. No one wanted to hear about it. My family lived out of town. My husband was told the same thing. Since his mom was an RN, he listened to her. As an elementary school teacher, my principal told me the same thing. They would be looking for signs of mental illness. I was so taken off guard by these comments as my grieving process had hardly begun. I grieved in silence at home. I don't know how I managed. Years later, when my two sons born alive, were in middle school, the Oklahoma City bombing happened. As I watched on TV the mothers grieving over their babies, I lost it. I had a breakdown. I suddenly let all of my grief out. Was this PTS I was suffering from? I went to seek mental health and was put on Zoloft for depression. I am still taking it along with Klonopin for anxiety...I couldn't drive over bridges and had panic attacks after my breakdown. I have grandchildren now and i am retired from teaching. I am angry for not being allowed to grieve. Both our parents have long passed away. I suffered a second stillbirth in 1982 also.

Dr. Joanne Cacciatore said...

Gale- I am profoundly sorry about the loss of both your precious babies and the way that your grief was treated by others. I'm just so sorry.


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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