Tuesday, March 20, 2012

An Open Letter Regarding the DSM 5

Open Letter to the Board of Trustees of the American Psychiatric Association and to the DSM 5 Task Force

Two weeks ago, I wrote a blog opposing the DSM 5's proposal to reduce the DSM IV bereavement exclusion.

This blog has since gone viral in the most incredible way- 100,000 readers within its first few weeks. It seems that this proposal is experienced as an outrageous insult by the very people it is intended to help. 

I have more than sixteen years experience dealing with tens of thousands of grieving people whose children die or are dying at any age and from any cause.  To my knowledge, there is no empirical standing for the arbitrary two-week time frame, and thus this proposal not only contradicts good common sense but also rests on weak scientific evidence. 

One thing in which the literature is clear: long-term psychological distress is common in this population and other populations suffering traumatic deaths. In my experience both as a researcher and clinician in the field and also as a bereaved parent, the DSM 5 proposal is radical, unnecessary, challenges what it means to be human, and for some may be dangerous.

Those with severe depressive symptoms distinguishable from normal grief can already be diagnosed as soon as is needed using the DSM IV criteria. In contrast, DSM 5 would require a distinction between normal grief and mild depression shortly after the death of a loved one that is often impossible to discern for even the most experienced clinicians.  The DSM 5 may well create problematic false positives- and thus cause further harm, to an already vulnerable population. There are many more reasons we oppose these changes, many of which are outlined in my blog

Our international organization (MISS Foundation) has 77 chapters around the world and has helped countless grieving families and the professionals who serve them. All our services are free and we are a volunteer-based organization.  Our website gets more than one million hits per month and we have 27 online support groups.  We oppose this change with our minds, with our hearts, and with our numbers. 

I speak on behalf of the MISS Foundation's grieving families: Should the DSM 5 stubbornly ignore the evidence and the mounting professional and public opposition, our last alternative will be to call for more direct action- in the short term, our organization will rally the support of Congressional leaders; in the longer term, we will have no choice but to join a concerted boycott against the use of the DSM 5 in treating bereaved families facing the death of a child.  

Process transparency is also important. Please respond promptly with an indication of the next steps and timetable in the APA review process; what is the organizational table for making this decision; on what grounds will it be made; when will it be announced; and, is there an appeal process? 

On behalf of hundreds of thousands of bereaved people around the world, I implore you to reverse this poorly conceived and unnecessary decision.  My more than 100,000 readers and I hope to hear from you soon.

Joanne Cacciatore, PhD
For the MISS Foundation

Organizations which currently support our opposition:

Elisabeth Kubler-Ross Foundation
The Ronan Thompson Foundation
Good Therapy
International Society for the Study and Prevention of Perinatal and Infant Death  
Hospice and Healthcare Solutions
Finley’s Footprints
Babies Remembered
Loss Doulas International
Dolores Ann LeGault Foundation  
Swedish National Infant Foundation  
Grieving Dad’s Foundation 
Fundacion Esperanza, Mexico
EMMA, Romania
Ciao Lapo, Italy
The Grief Recovery Institute

Read some of the currently 89 comments from the original blog below, deeply intimate and compelling stories, because the assent of the relevant community is of the utmost importance in this matter.


Anonymous said...

Dear Dr. Cacciatore,

Please add Fundación Esperanza, México, to the list of associations against the DSM 5 grief exclusion.


Carla Roel de Hoffmann
President and Founder.

Anonymous said...


Fran Dorfman, MA, MSW

Anonymous said...


Fran Dorfman, MA, MSW

Barry Kluger said...

As a grieving father, bereavement is a natural process, a lifecycle that requires time,patience and a healing regimen that does its best to return those who grieve to a 'new' kind of normalcy.

There is no acceptable calendar of 'cures,' and there is no scientific evidence that supports the DSM newest 'findings' and proposed changes. Diagnosis of mental illness only adds a stigma and drives people back into their corners, with an added burden of pain and confusion.

Science has its place in the treatment of many diseases but a condition such as grief requires people to adjust and adapt to new feelings as they continue their journey.Putting time constraints on those conditions only impedes the road to healing.

Barry Kluger
The Farley-Kluger Amendment to the FMLA

pam bradley said...

I'm a bereaved Mom (ex mom) looking for a job and this will affect me! NO.

Lois Holzman said...

I'm thrilled to hear your blog on the DSM-5 went viral! We need more of that. I'm tryng the same although with the broader issue of diagnosis. If you're interested, my recent blogs posts are on this topic at loisholzman.org

PSACHNO said...

A very impressive and powerful letter! I applaud your efforts.

When we say we are healing from grief, this seems to imply sickness. But we can also heal from wounds, that have nothing to do with "illness".

I am shocked at the poor revision of the DSM V. It seems clients are not a priority--money and power are.

Anonymous said...

The politics behind the DMS is thick -- it took years to get homosexuality off the list -- The coding allows the shrinks to get paid. It will be a long fight, but well worth it, especially with Medicare/Medicaid involved. Give 'em hell!


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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