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More Than 65,000 Grievers Must Be Heard—and Should Be Heeded

By Allen Frances, MD | March 6, 2012

Of all the misconceived DSM-5 suggestions, the one touching the rawest public nerve is the proposed medicalization of normal grief into a mental disorder. Fierce opposition has provoked 2 editorials in The Lancet, a front-page New York Times story, and incredulous articles in more than 100 journals around the world.

And now, in just the past 4 days, there has been the kind of online miracle that is possible only on the Internet. Joanne Cacciatore wrote a moving blog that rapidly made its viral way across the world and into the hearts of the bereaved. An astounding 65,000 people have already viewed her piece and then passed it on to friends and families. You can join them at http://drjoanne.blogspot.com.

Dr Cacciatore is a researcher at Arizona State University and the founder of the MISS Foundation—a nonprofit organization that provides services to grieving families whose children have died or are dying. The MISS Foundation has 77 chapters around the world and a Web site that gets more than 1 million hits per month.

Dr Cacciatore writes:

“Across all cultures, the death of children is a particularly traumatic blow. Most people quaver at the thought of losing a child—for millions around the world this feared tragedy is reality.

“I have long opposed the DSM-5 suggestion to remove the bereavement exclusion, but chose to remain silent because I simply could not believe it had any chance of making it into the final version of the manual. It made no sense that DSM-5 would allow providers to diagnose a serious mental disease—Major Depressive Disorder—when people are having nothing more than the perfectly normal symptoms of grief.

“I decided to speak now because it appears almost certain that DSM-5 will actually go forward with this poorly conceived proposal to pathologize the authentic human experience of sorrow. After just 2 weeks, a grieving person may be categorized as 'mentally ill' at the casual discretion of a psychiatrist, social worker, or psychologist. The arbitrary, rapid-fire absurdity of this ‘14-days post-loss-becomes-depression’ travesty has ignited a fire against the DSM machine in the pit of my being.

“We cannot expect that a family should be functioning as if nothing has happened 2 weeks after the death of a child. I wonder how many people on that DSM-5 committee have buried or cremated their own child? Shouldn’t the relevant community—those affected by these insulting changes—have some input?

“I cannot stand silently by and allow this diagnostic charade to find a place in DSM-5. To do so would be unethical and would violate what I know to be real and true and human. Big love means big suffering. And few, if any, relationships are as meaningful and filled with love as that between a parent and child. It badly misses the point and minimizes the experience to treat the death of a child as if the prescription of a pill can cure the normal heartache. As The Lancet pointed out, the doctor having a compassionate and open heart is much more helpful than jumping to a premature diagnosis.”

The 65,000-person (and counting) endorsement of Dr Cacciatore’s cri-du-coeur is simply staggering and sends the clearest possible message to the American Psychiatric Association (APA). Previously, DSM-5 has brushed off the many thoughtful and spirited criticisms mounted by experts in the field disputing its interpretation of the scientific literature as it relates to the diagnostic issues involved in grief. DSM-5 has equally shrugged off the criticisms coming from the broader field of medicine—as expressed in The Lancet. And DSM-5 has responded testily and ineffectually to the unanimous ridicule it has received in the world press.

Long ago, the APA should have realized that this suggestion needs a quick and decisive rejection—instead it turned a blind eye to all previous warnings. Now the APA faces a far more serious and undeniable opposition—a spontaneous revolt by the large community of the bereaved. They soundly reject the DSM-5 proposal and refuse to allow themselves to be misdiagnosed by it. It has now come down to DSM-5 against the world. How long can the APA depart from common sense and continue in the folly of medicalizing normal grief? I hope that APA will finally hear Dr Cacciatore’s plea and act swiftly on it.

Grief deserves dignity, not diagnosis.

 

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by Ronald Pies | April 16, 2012 3:26 PM EDT

This new study may be of interest to readers following the debate:

Depress Anxiety. 2012 Apr 11. doi: 10.1002/da.21927. [Epub ahead of print]
THE BEREAVEMENT EXCLUSION AND DSM-5.
Zisook S, Corruble E, Duan N, Iglewicz A, Karam EG, Lanuoette N, Lebowitz B, Pies R, Reynolds C, Seay K, Katherine Shear M, Simon N, Young IT.
Source

Department of Psychiatry, University of California, San Diego, California; Veterans Affairs San Diego Healthcare System and Veterans Medical and Research Foundation, La Jolla, California.
Abstract
BACKGROUND:

Pre-DSM-III (where DSM is Diagnostic and Statistical Manual), a series of studies demonstrated that major depressive syndromes were common after bereavement and that these syndromes often were transient, not requiring treatment. Largely on the basis of these studies, a decision was made to exclude the diagnosis of a major depressive episode (MDE) if symptoms could be "better accounted for by bereavement than by MDE"unless symptoms were severe and very impairing. Thus, since the publication of DSM-III in 1980, the official position of American Psychiatry has been that recent bereavement may be an exclusion criterion for the diagnosis of an MDE. This review article attempts to answer the question, "Does the best available research favor continuing the 'bereavement exclusion' (BE) in DSM-5?" We have previously discussed the proposal by the DSM-5 Mood Disorders Work Group to remove the BE from DSM-5.
METHODS:

Prior reviews have evaluated the validity of the BE based on studies published through 2006. The current review adds research studies published since 2006 and critically examines arguments for and against retaining the BE in DSM-5.
RESULTS:

The preponderance of data suggests that bereavement-related depression is not different from MDE that presents in any other context; it is equally genetically influenced, most likely to occur in individuals with past personal and family histories of MDE, has similar personality characteristics and patterns of comorbidity, is as likely to be chronic and/or recurrent, and responds to antidepressant medications.

CONCLUSIONS: We conclude that the BE should not be retained in DSM-5.

by Ronald Pies | March 22, 2012 5:55 PM EDT

My colleague Dr. Moffic expresses appropriate "confusion"about this topic! It is confusing for many reasons,
including some of the diagnostic issues surrounding "normal" grief; complicated (traumatic) grief (CG); and post-bereavement major depression (PBMD). A good article from a more existential-psychodynamic perspective is by Christine Bruce, and may be viewed at:

http://www.jaoa.org/content/107/suppl_7/ES33.long

I agree with Dr. Moffic that PCPs and perhaps Ob-Gyns are more likely to be involved in the early weeks after bereavement, particularly with postnatal bereavement (e.g., stillborn). Some data indicate that these doctors often endorse use of benzodiazepines for complaints of post-bereavement insomnia or distress, though there appears to be little evidence to support this position [see, e.g., Cook, J.M., T. Biyanova, and R. Marshall. Medicating grief with benzodiazepines: physician and patient perspectives.
Arch Intern Med, 2007. 167(18): 2006-7.].

I understand that Dr. Cacciatore has data showing that many recently-bereaved mothers are started on antidepressants, shortly after postnatal death (stillborn), presumably by their Ob-Gyns. This
could well be an unwarranted practice in many cases, depending on the clinical picture, duration of
symptoms, presence of suicidality, melancholic features, etc. (I have not seen the actual data).

On the other hand, antidepressants for post-bereavement major depressive symptoms may sometimes be
helpful, and there are no signals from the few available studies that antidepressants "interfere with" or
"short circuit" grief work. For example, Hensley et al (J Affect Disord. 2009 Feb;113(1-2):142-9. Epub 2008 )
found that escitalopram was helpful in PBMD, and this was true in patients with both complicated and
uncomplicated grief.

To reply to Dr. Moffic's question about the role of psychiatrists: it seems to me our role will be mainly that of consultants to the PCPs, unless the bereaved patient develops a psychotic depression or suicidality, shortly after bereavement. It would be very rare for a psychiatrist to see a bereaved person within the first 2-4 weeks after the loss, unless the grieving process had gone badly off-track. I believe our role as consultants should be
to emphasize that:

(1) Grief is "normal" and not a "disorder", and does not usually need any treatment if
features of CG or PBMD are absent. The person's ethnic and cultural values and rituals should also be
considered in evaluating the quality and progress of their grieving.
(2) Nonetheless, bereavement does not "immunize" a person from developing a major depressive episode, and in fact is a frequent precipitant of major depression;
(3) If a bereaved patient presents with symptoms of major depression within the first 2-8 weeks after bereavement, a diagnosis of MDD (major depressive disorder) should not be ruled out simply because it occurs in the context of loss. However--and this is critical--the 2-week minimum for MDD now in DSM-IV (and likely to stay in DSM-5) is often too short a time to discern the "trajectory" of the person's condition, and even MDD symptoms should not lead reflexively to the prescription of antidepressants.
(4) For apparent PBMD, I believe it's often best to schedule a return evaluation, a week or so after the initial visit, and to re-assess the patient's symptoms and course. Those patients with mild-to-moderate PBMD/MDD may do fine with psychotherapy alone. Those with severe MDD, particularly with melancholic features or
suicidality, may benefit from combined treatment (antidepressant and psychotherapy).
(5) Those who fit the criteria for complicated grief (CG) appear to benefit from specific CG therapy, as described by Kathy Shear [see Shear MK, Bereave Care. 2010 Jan 1;29(3):10-14.]. It is not yet clear how helpful antidepressant medication is in CG, though there is, as yet, no evidence that it interferes with "grief work."

The bottom line, Steve, in my view, is that we really need much more research in this area, and a great deal more education of both PCPs and psychiatrists, in the area of grief, CG, and PBMD!

Best regards,
Ron Pies

by Steve Moffic | March 15, 2012 10:39 AM EDT

I don't know if I am the only psychiatrist, but I'm sure getting confused about this discussion. More important to me is what we are supposed to do to help when we are contacted shortly after a major loss. Actually, I think PCPs are contacted much more often than psychiatrists right after a major loss, and often give some sort of sleeping pill. Is that appropriate or not? What do they think about distinguishing grief or depression? How do we educate them, or how do they educate us? What about clergy? What has been their experience and when do they decide to refer to us? How do we educate them, or how do they educate us? What do we try to say about this to the public when - and if - the diagnostic dust settles? Would sure be interesting to have a discussion that includes representatives from all these different perspectives.

by Ronald Pies | March 13, 2012 1:29 PM EDT

Bereavement and the Loss of a Child: The Need for Compassion and Careful Judgment
A Response to Dr. Cacciatore

[Posted on the Psychology Today website]

by Ronald Pies MD

I'd like to respond to Dr. Cacciatore's concerns and comments, as well as to some points raised by other readers. I also want to acknowledge the deep pain of those who have lost loved ones, and who have written in to this website. Your grief is not something to be judged or criticized or covered over-and nobody in my profession would argue otherwise.

Furthermore, I want to acknowledge the excellent work being done by Dr. Cacciatore and the MISS Foundation, which provides support and counseling to families who are grieving the death of a child. We can all agree on the importance of helping such families through what is undoubtedly one of life's most painful and anguishing experiences. As one useful website puts it,

"There is no more devastating loss than the death of a child. Losing a child is a disruption in the natural law and order of life. It is heartbreak like no other. Parental grief is different from other grief-it lasts longer and is more intense."
http://www.sidscenter.org/documents/SIDRC/LifetimeJourney.pdf

Most of the research on bereavement has been done in the context of the death of a spouse, which is also an experience of tremendous pain and anguish. Accordingly, most of what my colleagues and I have written re: bereavement is based on studies of widows and widowers. These studies generally show that while many widows and widowers do show several symptoms of major depression shortly after bereavement, the majority do not meet full DSM criteria (1). For example, Zisook and Shuchter studied spousal bereavement in late life, and found that about 24% of subjects met DSM-III-R criteria for major depression, 2 months after bereavement. The percentages declined to about 14% at 25 months.

As Dr. Karrie C. Hendrickson of the Yale School of Nursing has noted, parental grief after the death of a child is not nearly as well-researched as spousal bereavement, and the existing literature provides conflicting data (2). I'm not aware of any studies of parental grief after the death of a child, using DSM criteria, within the first 2 months after the child's death. But it would not surprise me if many or most recently-bereaved parents met current DSM criteria for a major depressive disorder (MDD), within the first few weeks of the child's death. The question is, what would this mean? Would a high percentage of MDD necessarily indicate that there is no cause for clinical concern, or no need for treatment? Would it not be "real"major depression?
It is often said that symptoms of major depression after bereavement (death of a loved one) are "perfectly normal"-but what does "normal" mean? Does it mean "frequent" or "occurs most of the time"? Does it mean, "healthy", "adaptive", "not clinically important"-or what? For example, Dr. Hendrickson's review found evidence that bereaved parents are at higher risk for completed suicide than are members of the general population, particularly if the child is younger than age 6 at the time of death. Cases of parental suicide have been reported, within days after the death of a child, even after the parent denied suicidal feelings or intentions to the doctor. (3).

Yes, to be sure: it is sometimes hard to tell severe grief from symptoms of major depression, in the first few weeks after bereavement. But this does not justify the notion that MDD should be "excluded" as a diagnosis during the first few weeks after a family member's death. Dr. Cacciatore is quite right in raising a red flag over the 2-week duration issue. My colleagues and I have argued that two weeks is often too little time to make a confident diagnosis after any major loss-whether the death of a spouse, a divorce, or even a job loss (4).

And, yes: when the death of a child is involved-a tragedy that is almost unfathomable--I would expect even greater difficulty predicting the "trajectory" or course of the bereaved parent's depressive symptoms, only 2 weeks after the death. These are all reasons to change the 2 week criterion for MDD- but none of this justifies keeping the bereavement exclusion in DSM-5.We must also greatly increase the training of all physicians and mental health clinicians, so that they can better distinguish grief from MDD.

To be clear: nobody wants to see doctors prescribe antidepressant medication when it isn't needed, or to "medicalize" ordinary grief. Unfortunately, the definitive controlled studies have not been done, and virtually no studies have looked at bereaved individuals within 2 weeks of the death. But most of the available studies find no major differences in course, outcome, risk or response to treatment, when MDD symptoms occur in the context of bereavement; after another type of loss; or in the absence of any loss at all (5).

Dr. Kay Jamison, who lost her husband to cancer, eloquently describes the differences between major depression and the grief of bereavement. I recommend watching her video interview at the link http://bigthink.com/ideas/16713. In her book, Nothing Was the Same, Dr. Jamison comments that, "The capacity to be consoled is a consequential distinction between grief and depression." Indeed, this is one of the distinguishing features of ordinary grief that is not even mentioned in the DSMs.

It is one reason we need to move beyond symptom check lists, in trying to understand the difference between grief and major depression. My colleagues and I have started to develop a questionnaire (the PBPI) aimed at helping clinicians tell the difference. Readers can link to it by going to
http://psychcentral.com/blog/archives/2012/02/28/how-the-public-is-being...
and clicking on the word "here", right after the term "PBPI". It can also be found on the Psychiatric Times website.

I hope Dr. Cacciatore will join me and my colleagues in investigating the utility of the PBPI, in her bereaved clientele. We certainly share the goal of respecting the need to grieve, and supporting families and loved ones through the stages of bereavement. I believe all of us in the helping professions want to honor what Thomas a Kempis called, "the proper sorrows of the soul."

Sincerely,
Ronald Pies MD

References:
1. Zisook S, Shuchter SR, Am J Geriatric Psychiatry 1993; 1:316-326.
2. Hendrickson KC: Palliative and Supportive Care (2009), 7, 109-119
3. Davies DE: BMJ. 2006 March 18; 332(7542): 647-648
4. Lamb K, Pies R, Zisook S: Psychiatry (Edgmont). 2010 Jul;7(7):19-25.
5. Kendler et al, Am J Psychiatry. 2008 Nov;165(11):1449-55. Epub 2008 Aug 15.

by Ronald Pies | March 06, 2012 8:58 PM EST

Alas, there has been so much misunderstanding on this issue, I have almost despaired of writing about it! Unfortunately, the issue of the bereavement exclusion has become a kind of "proxy"for many gripes and grievances directed against psychiatry over the years, and the debate has devolved into passionate demagoguery and repeated incitement of "interest groups", rather than careful examination of the scientific and clinical issues. Specifically, there are no credible, controlled, clinical studies of depressed patients that support the concept of a "bereavement exclusion". [For complete references and discussion, please see
http://psychcentral.com/blog/archives/2012/02/28/how-the-public-is-being-misinformed-about-grief/2/].

Unfortunately, some experts in mood disorders who have pointed this out are tarred with the brush of
failing to give grief "dignity." Dignity comes from being careful, honest and respectful when working with
our patients, not from jiggering our diagnostic criteria to appease public outcries, or because the New York Times has misrepresented the issue. Moreover, when we push the DSM-5 work groups to make decisions based on popular sentiment (and sentimentality), we merely reinforce the old canard that "Psychiatric diagnoses are just a matter of taking a vote--it's all political!" The DSM work groups need to consult the best available research, not "which way the wind blows."

Much of the confusion in this debate focuses on the 2-week duration for a Major Depressive Episode, which many of us believe is often too short to make a confident diagnosis, after any type of serious loss-divorce, job loss, death, etc. But this is a separate issue from that of the bereavement exclusion (BE), which needs to be addressed on its own merits. (Several of us have urged the DSM-5 work group to reconsider the 2-week period; e.g., see Lamb et al, Psychiatry (Edgmont). 2010 Jul;7(7):19-25.)

The problem with the 2-week rule will continue in DSM-5, unless it is changed, whether or not the BE is dropped. (By the way, based on my nearly 30 years in the mood disorders arena, it is extraordinarily rare for a bereaved person to consult a psychiatrist within 2 weeks of bereavement, unless he or she senses that something in the grieving process has gone terribly wrong; e.g., the grieving person develops suicidal ideation, psychosis, severe inability to function, etc., in which case the BE becomes moot and is not applicable anyway).

As for the arbitrary 2-month "limit" on bereavement now in DSM-IV, that certainly should be eliminated or amended in DSM-5, in my best professional judgment. Ordinary grief per se may persist for months or even years, and by itself, is not a "disorder." Clinical concern arises when either "complicated grief" or major depression supervenes and disrupts the adaptive functions of ordinary grief.

Indeed, nobody is doubting that ordinary grief associated with bereavement has an adaptive value, and is part of our innate human heritage-the "price we pay" for having deep emotional bonds with our fellow creatures! Grief, to quote Thomas a Kempis, is one of "the proper sorrows of the soul."

The question is, what to do when grief is associated with the full symptom and duration criteria for major depression, shortly after bereavement (anytime within 2 months)? Contrary to what is sometimes implied, most recently-bereaved persons do not meet full DSM-IV criteria for MDE, and the 1970s studies of Dr. Paula Clayton (using pre-DSM-III criteria) do not show otherwise.

The other persistent confusion regards "treatment", which is almost always interpreted to mean "medication." Nobody who is arguing in favor of eliminating the BE is urging that all post-bereavement major depression be "medicated"! Psychotherapy alone should suffice for most mild-to-moderate cases of post-bereavement major depression. And ordinary, "adaptive" grief does not need "treatment" at all. Unfortunately, many clinicians have not been taught to distinguish grief from major depression. Recently, my colleagues and I have developed a prototype questionnaire, the PBPI, that may someday help clarify the diagnosis, once it has been field-tested [posted on Psychiatric Times]

But rather than listen to a mood disorder specialist, I would urge readers to listen to Ms. Willa Goodfellow.
She has written movingly of her own struggles with depression and grief--and explained how the two differ. She has supported removal of the bereavement exclusion, on her website, where I have also commented [see http://prozacmonologues.blogspot.com/2012/02/griefdepression-iii-telling-difference.html]. She also voices caution about over-use of medication, and I support her on that. I urge you to read her comments.

Ms. Goodfellow writes astutely of the two different reactions--"little d" depression (essentially, grief after bereavement), and "Big-D" depression--shortly after her mother's death. Her final sentence is absolutely critical in understanding this controversy. The psychosocial "context" of depression is very important in conducting psychotherapy; it should not be a criterion for deciding whether or not a clinical disorder is present:

"A month after [ my mother's] death, well within the two month Bereavement Exclusion, the wall gave way. The [little d] depression became Depression, global, all-consuming, falling into the hole that has no bottom. In true Depression fashion, the feeling of falling with no bottom led to the thought that I was doomed. There are no meds. There is no way out... [ ] It never goes away. It will never go away. This is the rest of my life, until I can no longer live it...There is the difference between grief and Big-D Depression. It's just not in the DSM. The proximate cause of the symptoms is not sufficient to tell the difference. Neither is two weeks. Neither is two months. The point is, it is perfectly possible to have both. People who have life-threatening depression can lose a loved one, just as easily as people who do not have a life-threatening depression. Bereavement is not a protective factor. In fact, it is a risk factor. People who have Big D- depression need treatment, regardless of whether their depressed mood makes sense in their context."

I hope you will read Ms. Goodfellow's full blog, and consider it carefully. We do not want to "medicalize" grief; but neither can we afford to "normalize" major depression.

Ronald Pies MD






 
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