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


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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.