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

Friday, October 19, 2012

"I'm having a baby girl" and a helicopter

It's been a week filled with the unexplainable.

Interestingly, just last week, I had a long discussion with some students about all things noetic, spiritual, and ineffable. We talked about how, in this material world, we sometimes have extraordinary experiences for which there is little or no scientific data to understand the how or why something happened. And why it is so important, as aspiring mindful clinicians, to accept those experiences as real for people. Because.they.are.real.

You know those little things, right? Seeing a butterfly at just the right moment or some kind of sign or symbol of your Beloved?

I've experienced many of these, and I usually, scientist-wanna-ninja that I am, try to explain them away empirically.

This time, like several other times, I couldn't.

I've sat with it now for more than 24 hours, and I am still in awe of the experience.

It all started here with a client of the MISS Foundation whose little boy died almost 1-1/2 years ago. She has two surviving sons and is currently in her second trimester of a subsequent pregnancy.  I haven't actually seen her in person for several weeks because she's been traveling.

Here is the email I sent her, and I'd like to note the time:

From: Joanne Cacciatore
Subject: WTH?
Date: October 18, 2012 6:45:09 AM MST
To: Dr. Jo's client who will remain unnamed

                 ...I dreamed we were getting into a helicopter.  You, me, your two living boys, and a little girl (who I had never seen). The little girl was very cute.  She looked like your son who died.  Then we all got into the helicopter... and we took off in the helicopter to go see your son who died... Then I woke up.  Wow.  

At 10:30 am, just a few hours later, I got a phone call from this beautiful mama, and she was crying. Really crying. She had received my email. 

"I'm having a girl, I'm having a girl!" she said sobbingly.

"Wait, what?" I said in disbelief.

"I'm having a baby girl!" she repeated.

What I did not know when I awoke from that strangely-placed dream was that she was getting ready, at that very moment, for an appointment with her doctor and within an hour or so, would find out that she was having a baby girl.

We were both... well, frankly, speechless.  I sat with it all day. 

Late last night I sent another email:

"At any point, did you tell me about the doctor's appointment today? I mean, did you mention it and maybe it was in my unconscious?"

Her immediate reply:

"I didn't tell you about the doctor's appointment. I just made it last minute..."

I don't know how to explain this but I know it happened. 

What is the nature of reality? Why do these things happen? What does it mean about non-materiality? 

I have no idea.

But for centuries, mystics have understood the meaningful power of synchronicity.  From near death experiences to to meaningful coincidences to just plain unexplainable phenomena, scientists and theologians have grappled to understand how and why these things happen.

I'm remembering the night Elisabeth, my best friend and mentor, died in 2004. Just before her death, she told me when she died, she'd send me a sign that she was "dancing in the stars". 

This is an excerpt I wrote from the book about her, Tea with Elisabeth:

On July 24, 2004, exactly one month before her death, I had a dream that Elisabeth died. In my dream, I was sobbing and mourning, feeling desperate to have my friend back. She appeared to me, surprised by my sadness. She told me to stop crying and assured me that she was fine. Then she told me not to worry, well-aware of my enduring tug-of-war with faith- she said reassuringly, “I’ll see you again one day”...

I came home the night of Elisabeth’s funeral services exhausted and aching. I already missed her so much and felt grief’s grip around my chest.  Around 11 p.m., I went onto my front patio and sat in my rocking chair. I leaned my head back and began to sob, talking to Elisabeth in my mind. With tears rolling down my cheeks, I asked her for a sign- for a very clear sign- I asked her for something like a shooting star, not really expecting anything miraculous. A few minutes later, I opened my eyes with my head leaned back and immediately saw a bright shooting star traveling from the east to the west sky... I realized that Elisabeth is, indeed, doing what she said she would be doing... dancing in the stars.

I still don't understand that experience either.

The connections we have with whatever is beyond this world may not be comprehensible within the context of our present minds. That's okay with me. 

But what I do know is that I don't have to understand these experiences. All I need to do is accept them for the beautifully mysterious. 
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _

And, I can't wait to meet this special little sister. She is already adored and loved by all three of her brothers. And, I feel like, in some unexplainable way, I already know and love her.

Monday, October 15, 2012

The Story of Benjamin: The fullness of love comes full circle

In my "being with Death" work, I meet the most amazing and beautiful and open-hearted people in the world. The stories I hear change my life and expand my heart. Oh yes, I cry - a lot - every day at some point, I end up crying. But, that's okay. I'm not attached to stoicism.

While I work mostly with bereaved parents and siblings, what I know is that every person on Earth is or will be bereaved at some point.

That includes students.

I meet a student or two every once-in-awhile who really gets it.  I don't always know why he or she gets it in such a big way- at least at first. But nearly always, what I later learn is that there is a story of deep loss behind the curtain of his or her life.

I'd like to share a truly profound story from a former student who opened her heart to me in a big way, and both she and her father Benjamin, gave me a tremendous gift of shared sadness, compassion, and gratitude.

This student's grandmother lost three of her six children, one was the student's father, Benjamin.

But, the grieving mother/grandmother did not speak of her children who died. No one spoke of them. It was forbidden, kept "secret", in "hiding... or lying through omission". These were secrets for which the student said the entire family now "pays the price".

So, for her own 28th birthday, the student generously asked for donations to the MISS Foundation in lieu of gifts in honor of her father, Benjamin, his two siblings who died, and their grieving mother, her grandmother.

She wrote her story and sent it to me in word-pictures:

In the words of that grieving little girl who became my student many years later:

"I do miss my dad, and I wish that I'd had a chance to know him... his family misses him. 
I wish that somebody in my family had been brave enough to talk about what happened to him and made it okay to talk about him with me. 
My cousin said that she was putting me to bed after my dad died 
and I asked why we didn't go to the hospital anymore 
(which is when my cousin realized that nobody told me what had happened - at least in a way that a four year old would understand). 
When she did, she said my response was immediately, 
"It's all my fault." 
I have no memory of this at all, but what a conversation to have to have. 
My cousin had no idea until last night that I already knew he died from AIDS; 
she was told by multiple members of the family that she was not to discuss it with me. 

The work of the MISS Foundation opened up my own family's hearts 
and reminded them to have a bit more compassion for others, 
maybe even to reach back into the past and understand a little more of our own history. 
And that it is okay to take out those emotions and stories and sit with them awhile. 

So in sum, I'd also like to say thank you, because I think it's a gift to feel truly connected to your past and to your loved ones, even the ones you think you lost... It was thru my work with MISS Foundation that I more completely understood how my grandmother must have suffered."

I cried with her when I read her email. I cried for the little girl who lost her father. I cried for the woman who lost her son. And I cried for Benjamin, a man who would never get to see his little girl grow up to be the beautiful and breathtaking human being she has become. The fullness of love is abundant in her.

Thank you student-teacher. You know who you are. Thank you.  I bow to your beauty and your pain.

A Part of Us... yesterday, today, into eternity

A Part of Us from Jimmy Carrauthers on Vimeo.

For more information on this event and to view pictures visit our site.

While all of October is Awareness Month, today is Infant and Child Death Awareness Day.  Please, share with grieving parents, grandparents, siblings, and friends around the world and light a candle in your time zone at 7pm in honor of all the children gone too soon and the families who mourn in their absence. We honor, remember, and MISS them together.


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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