Monday, December 3, 2012

The Death of Grief, the Birth of Mental Illness





For immediate release December 4, 2012

Dear MISS Foundation families, providers, and supporters,

We are saddened and disappointed by the recent announcement that the DSM-5 task force has finalized the decision to eliminate the bereavement exclusion from the Major Depressive Disorder diagnosis in the upcoming edition of the manual. This move will allow clinicians, including counselors, general physicians, social workers, and psychiatrists, to diagnose a major mental disorder in bereaved parents and other grieving individuals as early as two weeks following the death of a loved one should they meet the DSM-5’s criteria for depression. Importantly, many of you will recognize these criteria which include sadness, feelings of emptiness, crying, sleep and weight changes, guilt and regrets, and loss of interest or energy. Yet, all of these symptoms are quite common in grief, and particularly after the death of a baby or child which evokes enduring and intense reactions in parents.

This move has personal implications for the MISS Foundation. The DSM-5 change increases the likelihood that grief will be misdiagnosed as Major Depressive Disorder in the most vulnerable of all populations.1 The possibility exists that bereaved parents and other grievers will be mistakenly treated for a misdiagnosed mental disorder. Recent trends suggest that the most common form of treatment offered for this disorder is psychotropic medication.2-3 While some medications may be effective for some forms of depression,4 there is no sound evidence that they are effective for grief. Research shows that bereaved parents are already medicated earlier than can be justified by current evidence.5-6 We fear the DSM-5 change will exacerbate this trend and cause even more grieving individuals to be prescribed medication for symptoms which are actually a normative response, despite the lack of evidence to support this practice and a lack of information on how such medications may interfere with the grieving process.

The MISS Foundation has actively opposed this proposed change in DSM-5 and will continue to do so. You can read Dr. Joanne Cacciatore’s initial blog post which went viral in March of 2012 on this topic here.  The first open letter outlining our concerns sent to the American Psychiatric Association in March can be read here and another letter sent in April can be found here. Finally, in October the MISS Foundation issued a formal letter on behalf of the organization and can be viewed here. Finally, many links to research and articles about this issue can be found in this blog entry at the end.

We issue a caution to our families: We urge bereaved individuals to be informed about what this change could mean when seeking help from medical and mental health providers using DSM-5, scheduled to be published next year. Should you have concerns about the quality of medical/mental/emotional care you are being provided, please speak with experts who can help guide you. Get help somewhere, indeed.

Please be assured that many other parents are experiencing the same immense suffering and that you are not alone. Seek solace through skilled and highly trained providers who truly care for you and are willing to walk with you through your darkest times: providers who understand the death of a child as life’s worst tragedy and who will be truly present with and available to you. Seek solace through like others in support groups, online support, and through your community.  Seek solace in spirituality and nature and books that help you to cope as you travel this overwhelming road. Seek solace through self-care and compassion. Seek solace through others who are unconditionally loving whether that be your partner, family, children, animals, or your faith based community. Seek solace through contemplative practice such as prayer, meditation, and quiet time and also through action in service and kindness toward others.

We issue an ardent appeal to providers: The bereaved are a vulnerable population. Please, be mindful and conservative in the issuance of diagnoses and medication, and educate yourselves in evidence-based practices as well as culturally influenced interventions. Take personal responsibility to learn what is truly normal, not pathological, after a traumatic death. The DSM-5 gives you much power and influence over the life of another. Please do not take this responsibility to “do no harm” lightly.


Dr. Joanne Cacciatore, Founder                                           Kara Thieleman, MSW, PhD Student         
Karla Helbert, LPC, Facilitator                                              Dr. Melissa Flint, Clinical Psychologist                    
Jennifer Soos, MFT, Facilitator                                             Dr. Trish Wonch Hill, Policy Analyst
Barry Kluger, CEO                                                                 Kelli Montgomery, Executive Director
Yasaman Parsi, Grief Counselor                                          Rebecca Ong, MSW, Grief Counselor


References

1. Wakefield, J. C., & First, M. B. (2012). Validity of the bereavement exclusion to major depression: Does the empirical evidence support the proposal to eliminate the exclusion in DSM-5? World Psychiatry, 11(1), 3-10. doi:10.1016/j.wpsyc.2012.01.002
2. Mojtabai, R., & Olfson, M. (2008). National trends in psychotherapy by office-based psychiatrists. Archives of General Psychiatry, 65(8), 962-970. doi:10.1001/archpsyc.65.8.962
3. Olfson, M., & Marcus, S. C. (2010). National trends in outpatient psychotherapy. American Journal of Psychiatry, 167(2), 1456-1463. doi:10.1176/appi.ajp.2010.10040570
4. Kirsch I., Moore, T. J., Scoboria, A., & Nicholls, S. S. (2002). The emperor’s new drugs: An analysis of antidepressant medication data submitted to the U.S. Food and Drug Administration. Prevention & Treatment, 5(1), 23a. doi:10.1037/1522-3736.5.1.523a
5. Cacciatore, J., Lacasse, J. R., Lietz, C., & McPherson, J. (In press). A parent’s TEARS: Primary results from the Traumatic Experiences and Resiliency Study. OMEGA.
6. Cacciatore, J., & Thieleman, K. (2012). Pharmacological treatment following traumatic bereavement: A case series. Journal of Loss and Trauma, 17(6), 557-579. doi:10.1080/15325024.2012.688699

Link to this article here. Please share far and wide with others.

45 comments:

Lori said...

Dear Dr JoRo,

I am so glad that Maya found you, you seem to be an AMAZING individual.

Dr. Joanne Cacciatore said...

Dear Anonymous,
40 years without your child is a long time. I'm profoundly sorry to hear about the death of your baby boy.

Thank you for sharing your story here.

Indeed, our inner processes influence our experiences of grief. So do our external experiences such as the way others treat, perceive, and interact with us.

Medications have changed substantially over the past few decades. I'd encourage informed consent for anyone on any type of medication.

Dr. Joanne Cacciatore said...

@Lori, thank you. I don't believe it was an accident.

Bug Family said...

This is so very disappointing and I'm so sorry to hear this sad news.
The fight continues...and my thoughts and heart are with us all bereaved and our precious babes.

MOJ

Ronald Pies MD said...

As Dr. Cacciatore and I have discussed in previous exchanges, the death of a loved one--particularly, the death of a child--is an unfathomable human tragedy. Nobody should put an artificial time-table on the ordinary and very human process of grieving that follows such a tremendous loss. Nor should grief itself be "medicalized" or turned into a "disorder."

That said, the matter of dropping the bereavement exclusion (BE) from DSM-5 is a much more complex issue. The BE was dropped mainly because, in effect, it disqualified persons meeting all symptom and duration criteria for major depressive disorder, simply because their depression occurred in the context of a recent death.
This ran the risk of shutting them out of mental health treatment--which by no means implies just "medication." It also ran the risk of pushing the seriously depressed, bereaved person out of psychotherapy.

Yet we know that the ability to grieve in a healthy and adaptive way is actually impeded when major depression intervenes and
goes untreated.

That said, I agree with Dr. Cacciatore that clinicians must be careful and conservative in applying the new DSM-5 criteria, in the context of recent bereavement.

We must not "medicalize" normal grief; but we must also avoid "normalizing" major depression, simply because it occurs in the context of recent loss.

For more on the differences between ordinary grief and major depression, please see my comments at:

http://www.wbur.org/npr/166682774/psychiatrists-to-take-new-approach-in-bereavement

and at:

http://www.geripal.org/2012/12/bereavement-does-not-immunize-grieving_4.html

Respectfully,
Ronald Pies MD

Kara Chipoletti Jones said...

I saw it happen during the death of our son. I saw it happen again just this summer with people I love. Within days of the death of a child, the ob/gyn or GP prescribe depression medication to the bereaved parent.

In a way, it almost doesn't matter that they are now removing what existed previously, because what existed previously ALREADY has led to medicalization of grief -- no suggestion or mindful thought on the part of practioners to even offer therapy or other options.

While Dr. Pies, doesn't want people in need shut out of psychotherapy or other alternative, the APA has just put the last nail in the coffin for any of us to get reasonable care instead of being numbed by medication. It was already happening with the two month exclusion. With the two weeks, it now just assures that we'll all be numbed into zombie-hood so that we can all get back to work.

I will continue to advocate -- in the name of my sons and goddaughter who died -- that bereaved parents seek any and all alternatives before admitting anything to medical professionals or working with anyone who adheres to DSM in order to get the insurance companies to pay for services. Coaches, therapist who reject DSM, energy workers, chaplains, anyone who simply can't and won't prescribe meds. At least those folks understand the concept of DO NO HARM.

The DSM decision is a business decision, pure and simple. It actually has nothing to do with the PEOPLE who end up sitting in front of the medicalization folks who call themselves "caregivers." Follow the money. It's not difficult to see the reality, if only we'd all WAKE UP.

Thank you to Dr. Jo and the MISS Foundation for continuing to be solid advocates of DO NO HARM. I know you saved my life more than once.

Dr. Joanne Cacciatore said...

Dr Pies,
Thank you for reading and for sharing your opinion on this matter that is so close to our hearts.

While I adamantly disagree with you, I respect your voice and your willingness to engage in open dialogue.

I've worked with bereaved parents for 16 years. If only you could see what I see: Mothers, particularly, heavily medicated on the day their baby dies; Providers who ignore, avoid, run from, and detach from their patients who have suffered the trauma of a dying or dead baby/child; A misuse, sometimes abuse, of power in relationship to bereaved parents; Mothers petitioned for hospitalization in the weeks after a child's death, against their will, strapped to beds and sedated so they are unable to fight.

These are not exaggerations. These are actual cases of families now in our care, and there are many more stories like this.

This "treatment" of which you speak varies wildly in terms of compassion and appropriateness and even, yes, even whether or no an intervention evidence-based. The stories I could tell you, which are not rare, would shock any person.

So aside from my concerns about the efficacy of "treatment" for bereaved parents, this will never, ever make sense to me in any way. It's a wide net cast upon grieving and vulnerable people which will likely catch, in itself, many unknowing victims in its snare.

And fundamentally this change alters what it means to be human and to love.

We are likely to never agree on this.

But I do thank you for reading.

As an aside, I'd again refer readers to the NPR segment with Dr. Jerome Wakefield, speaking about his own research about this topic:

http://www.npr.org/2012/12/06/166682774/psychiatrists-to-take-new-approach-in-bereavement

Finally, there is nothing "ordinary" about the death of a child or the relentless pain that follows. You speak, often, about "ordinary" grief being acceptable and anything beyond being pathological. The "pathological" symptoms of which you speak, purportedly as a mechanism to distinguish between psychiatric illness and normal grief, are symptoms I see each and every day in my population.

I will never be convinced that these thousands of parents are abnormal, mentally ill, or somehow not responding in a natural way, according to tenets of evolutionary and humanistic psychology as well as good common sense, when they react with prolonged and enduring suffering in the aftermath of child death.

Respectfully,
Joanne Cacciatore, PhD

Anonymous said...

I was medicated within 2 months of my son's full term stillbirth. I sought this 'relief', thinking it would help me. I felt I was not functioning, and because I fully bought into this idea that there was something wrong with me, I wanted medication to help me function. I just wanted help.

Within 8 months of constant psychiatric medication I was suicidal and hospitalized.

Today I believe it was because instead of working through my grief, I relied on medication. No one told me that grief was normal. I thought the feelings and dysfunction I was experiencing were abnormal. I was 'diagnosed' as manic depressive/bipolar, and went through a host of medications. It wasn't until I finally refused all of them that I was able to work through the profound loss of my son.

Just to put it in a timeline; I started psychiatric medication two months after my son died; four months later (six months from my son's death), I had highly intrusive/destructive thoughts of harming myself. Six months from medication onset, I had an attempt. I was hospitalized for three days in the Affective disorders unit. The entire time I was on medication (xanax, lithium, seroquel, and that is all I honestly remember although I 'tried' three times those, but they make you forget so I can't say for sure what all I tried now).

I remained on medication after my first hospitalization and three months later (10 months out) I was hospitalized again in the affective disorder unit for mania. That is two hospitalizations within a year of my son's death.

At that point, it was 12 months since the loss of my son. I decided to forgo all medication against all doctors order. I was 'bipolar' so refusing my meds was indicative of mania. I fought against it, had support from my psychologist, luckily, although she was highly suspicious.

It took 2-4 months off of the meds to simply FEEL again. And then I started to really deal with the grief. I got separated from my spouse in the meantime, got a divorce, went through a bankruptcy and foreclosure; all in the second year after the loss with no medication. The year after that, I got a new house and went on to complete my PhD. All of that I did without medication.

Today, five years later, I am not 'bipolar'. I don't take any medication. I was highly medicated, and I believe it lead to my thoughts of self harm and mania.

Had I been given only psychological (no psychiatric care) I do not believe I would've went through the hell I went through. I thought something was wrong with my brain. Turns out, it was grief. A very normal human emotion. If the Hippocratic oath still counts for something, then NOT medicating NORMAL grief is paramount. I do not think I would've went down such a dark and destructive path had I not been highly medicated with major psychiatric drugs. I do not think I would've had the very intrusive and disturbing thoughts of self harm. I do not think I would've had such complicated grief. What I needed was ONLY compassionate care from a health professional. I wish, in hindsight, that I had NOT been diagnosed and medicated. It was a huge impediment to my grief process, and honestly, it almost killed me.

I'm glad to be here now. A single parent, a healthy adult, a functioning member of society. I've been through hell and back, but I am not psychotic. I should have never accepted medication as a cure. It made my journey ten times harder and almost cost me my life and my living child her mother.

I am happy and grounded but I am still bereaved. I still experience symptoms of depression, particularly around my son's birthday (Thanksgiving) and his due date (Christmas). But I know what I've overcome. My journey would not have been so perilous if I had not been treated as mentally deranged.

I was a normal grieving parent. If someone had said this to me, I would not have accepted medication. I was vulnerable, and I deserved better care.

Dr. Joanne Cacciatore said...

Dear Anonymous-
Yes, you did deserve better care, indeed. Thank you for the courage to share your story.

I am so very sorry about your precious baby.

Yasaman Parsi said...

As a counselor whose worked with the bereaved, I know that it is quantitatively impossible to distinguish major depressive disorder from grief. There is too much symptom overlap.

Here are some of my concerns: How does one distinguish major depressive disorder from grief and vice versa? How would we know we are treating major depressive disorder vs. grief and which came first? Do we know how different treatments, such as medication, affect grief if actually prescribed for major depressive disorder?

The "symptoms" which are claimed to distinguish MDD from normal grief are actually symptoms I see all the time in bereaved parents. Does this mean all these bereaved parents are not grieving but rather are depressed? My clients would have a very hard time accepting this assertion.

They are fully aware of their grief for their child and everything they feel is traced back to the loss of their beloved child. In fact, there is nothing that they feel which is not related to their loved one. It would be so hard to tell them, "You have Major Depressive Disorder. You are not sad because of the loss of your child. You are sad because you are depressed." I can't imagine anyone who has gone through a loss would agree with this statement, much less to accept it only 2 weeks after their loss. And to say, "You are depressed because of your loss...," would bring us full circle as to what it would be that we are treating: MDD or grief?

Most Respectfully,
Yasaman Parsi

Dr. Joanne Cacciatore said...

Thank you for your comment Kara. I know that you and Kota were not treated with the dignity you so deserved and I know that has affected your journey.

I still remember those early days when even you weren't sure how you'd survive. You do those boys proud. And I'm proud to know you.

Joni Kabacinski said...

My greatest desire is to give a face to the world of grief I was thrown into by the death of my precious grandson.
After the funeral and upon returning home, I was desperate to not only understand grief myself, but didn't know how to help my own child. I wasn't depressed. I was overwhelmed by the fact that this baby I so dearly loved was no longer here with his family who missed him beyond mere words could express, while trying to learn how to cope with feeling helpless of no knowledge of how to function with such pain and sadness.While others around me tried to understand, they didn't. My physician was extremely compassionate and luckily didn't choose to "fix" me with medication.
We knew what depression looked like for me and this wasn't that.
After searching for an outlet to understand this grief thing that was foreign to me, I found a safe, compassionate, understanding place where I was allowed to understand what I was feeling was "normal".
It has helped me work through my grief. And I honestly don't know what kind of shape I would be in today if others, also grieving had not reached their hands out to mine and given me a voice.
There is no grief like the grief unspoken. I will forever be thankful for this organization that has helped me realize I'm not crazy or alone in this long, heart breaking journey. And for those who believe that grieving is a mental disorder do a grave disservice to those who just need to know it's a part of the loss.
I no longer fight through every breath. My fight now will be to bring knowledge and understanding to a grieving world who deserves to be heard.
Thank you for giving us a voice~Crazy in love with a baby no longer here~A Grandma

Sue Wintz MDiv BCC said...

As a professional chaplain and counselor with 30 years of experience in working with bereavement issues I am in agreement that the changes to the DSM-V are not in the best interest of those who are grieving. Grief is an intense emotional and spiritual experience that challenges everything that one has ever known and believed. These are issues that cannot be cured simply by potentially labeling them as depression and then sending the grieving person down the road of psychotropic treatment.

I appreciate the concern of the DSM-V committee to ensure that persons living with major depression get appropriate treatment. However by removing the bereavement exclusion they have done a disservice to those who are grieving. What the DSM-V committee has failed to recognize, despite its good intentions, is that for many health practitioners it is routine practice to prescribe medication rather than take the time to listen to and assess for spiritual and emotional needs and refer to the appropriate professional for non-medical treatment.

My experience with grief is not only as a professional, but as a parent. In 2003 our 17 year old daughter was killed by an adult who sped through a red light.

I remember clearly the morning after hear death when our family physician called with condolences and the offer to prescribe anti-anxiety and antidepressant medication. Despite urgings from friends to accept "so you can sleep", we declined. The pressure to be prescribed medication continued for several months.

Fortunately as a grief professional I knew that grief should not be medicated, that its emotions and spiritual distress are normal, and that there were other more appropriate ways to find the support and care. That is my hope for all bereaved persons, and particularly for bereaved parents whose pain and grief is the most difficult of all.

Joni Kabacinski said...

At the death of my grandson, I was thrown into the unrelenting nightmare known as grief.Not only did I not know how to cope with the most painful event of my life, but had to watch my own child suffer.
As time went on without really understanding how grief works, I sought an outlet. I found an organization that allowed me to bring a voice to my sorrow, with compassion and understanding I never imagined was possible.
I learned that I wasn't "crazy", but that grief has many faces and layers that I learned through the support of many caring others grieving themselves.
There is no grief like the grief unspoken.
My physician showed the professional and caring manner in which he always had, trusting me to tell him what I needed if anything other than a kind and gentle ear to hear my sadness.
Grieving is not a mental disorder.
It's a natural order of a loss so great you have to work through it to understand with others who understand and care.
For this I will forever be grateful. I don't believe I would have made it through this unrelenting nightmare without the forums that brought such hope and insight to my grieving heart. I took the hands so readily available to walk with me. And now I am able to extend a hand to others.
The only crazy I know I am is "Crazy" in love with a baby no longer here, whose birth brought more joy then I ever imagined possible, and his death bringing the greatest pain I've ever had.
A very thankful Grandma~

gwizard43 said...

In order to be taken seriously, Dr Pies' argument would need to satisfy a number of conditions, none of which in fact have been satisfied. In science, as Dr Pies surely knows, there is a dictum called 'Sagan's Law' named after the late, great Carl Sagan, which asserts that extraordinary claims demand extraordinary evidence. What has become glaringly obvious as this debate has proceeded over the last several months is that not only have Dr Pies and his cohorts not provided the 'extraordinary' level of evidence demanded, but have provided very little in the way of evidence at all to support their extraordinary claims!

The first condition he and his allies would need to satisfy is to demonstrate that the harm done by failing to medicate bereaved parents who also have MDD is greater than the harm done by inadvertent medication of those who do not.

There are several components to this condition that Pies and allies must, as a consequence, show:

1. That there is a large population of (bereaved + MDD) compared to the population of bereaved at risk for being accidentally medicated.
2. That the medications which Pies and allies which to administer to the (bereaved + MDD) population are efficacious - that is, do they work?
3. That the consequences of accidentally medicating bereaved parents who do NOT have MDD are negligible.

What immediately strikes one when considering these arguments is that each has a rather high wall of improbability to climb!

For example, while the debate continues over whether antidepressants are more effective than a placebo (while imposing vastly more costly side effects such as suicide and degradation in long term mental health), what is not in debate is that there IS a debate - i.e. that depression medication proponents have NOT convinced the medical or scientific community that these things even do what they are supposed to do! In fact, recent meta-analyses of well designed and conducted studies indicate that if you DO have MDD, you'd do just as well to take a sugar pill as an antidepressant! The kindest think we could say here is "we really do not know if those drugs work yet".

Also, to even advance such an extraordinary claim that risks medicating normal grief, one would think the proponents of such a scheme would have advanced rock solid evidenced that there are a large number of bereaved parents suffering from MDD and going untreated, vs a small risk of "accidentally" medicating bereaved parents who do NOT have MDD. And yet, they've provided NO unequivocal data showing this is the consensus view among those who study such things, and in fact what evidence does exist supports the opposite view! Yet for some reason, Pies and allies seem determined to NOT accept data from folks like Dr Cacciatore - one of the top researchers in the field of bereavement!

Again, the kindest thing one can say here is: we just don't know if there is some huge heretofore unacknowledged population of (bereaved + MDD) going unserved by drugs that may or may not work.

This is what passes these days for scientific rigor?

How can one explain this paradox? How can one explain this, for lack of a better term, bull headed reckless insistence on administering drugs of suspicious efficacy to a population that has not been shown to exist while ignoring the multitude of anecdotal data that clearly show the risks to the very population these people pay lipservice to wanting to serve? Science dispassionately takes in data, and disgorges analysis and recommendations. That is not what is happening here, so whatever process this is, it cannot be held forth as science. A suspicious person might even conclude that it has more to do with economics and generating dollars for pharmaceutical companies that it does with science.

(cont'd below)

gwizard43 said...

continued:

The last component is also the most heartbreaking one. We have on this very page testimony about the horrors of being medicated for normal grief - a position Pies and allies profess to not desire, but which their proposal will inarguably exacerbate. To put it simply:

We don't need to theoretically wonder about what suffering might be caused by medicating grief - we're swimming in it, particularly in the community of the bereaved. It is epidemic, and the suffering it causes, as described in this comment section, is immense - and, sadly, totally unrecognized (a few token words notwithstanding) by Pies and his allies. The plain fact is: the bereavement exclusion that currently applies under the DSM-IV is insufficient to prevent the pathologization of grief - this has already, IS already happening! The bereaved ARE being medicated, to their great harm, even as we speak, and their stories are not being heard by these elitists.

These men and women are setting themselves up as experts with the authority to dictate - and yet they are refusing to listen to the REAL experts - the BEREAVED! This is paternalistic, and it is not scientific, and it will prove both ruinously harmful, whileonly moderately profitable foe the pharmaceutical industry they serve.

And that brings us to the last condition which Pies argument fails to satisfy - the notion implicit in his argument, but never explicitly supported by data or logic of any sort (primarily because it's laughable on its face) that clinicians including physicians, psychiatrists, psychologists and other mental health caregivers to whom bereaved families might turn are uniformly highly trained, highly skilled and exquisitely attuned to all of the psychological nuances flowing from a child death event - and are in fact willing to undergo the process in alliance with the bereaved families (rather than, say, using the power to diagnose and prescribe as a way of distancing themselves from the profoundly painful feelings that regularly arise in caregivers in this situation). In fact, all we need to do is to reflect on comments already posted - with more to come I'm sure - to realize just how far from such an ideal circumstance we are.

In short, Dr Pies proposes a solution for a world in which the above conditions are true - but that's not the world we live in. In our world, psychiatrists routinely medicate patients because they're uncomfortable dealing with issues of dearth and loss. In our world, there is no data showing a multitude of bereaved parents also suffering from MDD and thus going unserved. In our world, antidepressants are increasingly understood to not only provide no better short term outcomes than placebos, but to quite plausibly do long term harm to the mental health of those who ingest them.

It makes me wonder what world these men and women who set themselves up as arbiters of the public mental health live in, 'cuz it sure ain't the one I'm livin' in.

Dr. Joanne Cacciatore said...

@GWizard,
Wow, thanks for your very intelligent and thoughtful comment. There is much I'd like to say to this, but time is lacking today for an appropriate response.

I will say this: You had me at Carl Sagan.

Brenda Fitzpatrick said...

Six years ago our lives changed dramatically. We got the knock on the door at 1:00 am telling us that our precious 23 year old daughter was dead. I couldn't believe it, at first. It happened to others, but surely wasn't happening to us. Our daughter, who had grown into a beautiful young woman was gone in an instant. I had been with her the day before and she was fine, except for the nagging back pain that she had lived with for a year with not much relief. The coroner ruled her death an accidental overdose of her prescription meds. Her husband found her on their bedroom floor when he came in from work that night late. Erin was our world. She grew from a beautiful little blonde haired, blue eyed angel into our best friend. As we aged she began to advise us on the latest trends. In an instant she was gone and our hearts were broken. Our family had this huge hole in it that nothing could fill. We had buried her baby sister just two years before she was born. She brought back some of the joy we lost when we lost her sister. Now she was gone. It has been six years and we are living for her brother and two step brothers. We grieve still for the hole in our existence where Erin lived. She lives in our hearts still. We still cry. We still long for her to be with us as we waken each morning. We were never medicated or received counseling.
How can anyone think that a parent who has lost their treasure, their precious child, will ever get over that loss? If we were medicated to numb the pain, the pain would still be there. A shattered life doesn't necessarily mean that a person's mental capacities have been diminished.
We will never get over losing Erin or Heather. We loved them more than ourselves. And love never dies!

Fred Ernst, PhD said...

Yasaman Parsi has identified the real source of the problem. The cause of the pain expressed in grief is loss, losing the target of our most tender loving emotions, as is the cause of the pain so often expressed in depression. I challenge any physician or neuroscientist in the world to describe precisely what is different in brain functioning that would reveal an underlying biological difference between grief related to the loss of a husband or so-called depression related to the abandonment by a husband.
Applying the concept of disease to these natural reactions to life’s unfortunate and often grave disappointments is an idea that should have seen its day but everyone should remind themselves that this concept generates huge revenue for an industry that has practiced corrupt science to support the widespread use of dangerous medications, as evidenced by the recent successful lawsuit against the manufacturers of Paxil. Despite this problem, these drugs continue to be used for depression and for grief and, especially in grief, they are doing far more harm than good.
The extraordinarily complex phenomena of grief and what is argued to be the “disease” of depression will never be distinguishable at a biological or biochemical level. They will always be distinguishable by the complexity of the relationships the person has with the lost loved-one. In many cases of losing a spouse there may be vast complexity based on the unique history of the relationship of the grieving person to the person who was lost. And, in light of overwhelming scientific evidence, it is inarguable that the source or cause of the reaction is directly tied to the complexities of that history and not an invented imbalance of a neurotransmitter system.
As a mental health practitioner, if you believe in the neurotransmitter idea, you will need only 15-minutes to decide and to intervene. If you respect the complexity and uniqueness of every human life, you will need dozens of hours to identify the complexities of the person’s life that explains the uniqueness of his or her reaction to it. Support will provide the person with an opportunity to understand his own complex situation and how to live with it. There is no drug and there never will be, a drug that will produce the same effect, ever!
The case of a parent losing a child is very special because the most deep-seated protective and nurturant emotions are brutalized. Because this “injury” is so severe to such primitive emotional processes, the grieving parent is likely to feel and express the pain associated with it for the rest of his or her life. In an oversimplified analogy, severe damage to a leg might very well create a distinctive life-long limp. But a leg-injured person usually finds a way to keep ambulating through life as most parents find a way to live on after losing a child, but frequently with perhaps an occasional or even frequent emotional limp.
I believe this is how we should view these issues. Understand that the medical analogies are nothing but metaphor. They are not meant to dictate and justify dangerous medical treatment. They are meant to teach about life’s complexities and help people to find ways to live with their pain as best they can.

Dr. Joanne Cacciatore said...

Brenda, Thank you so much for sharing your story here... We share in your sorrow.

@Dr Ernst, thank you for your response here. I know your words will resonate with and touch the hearts of many of our parents:

"The case of a parent losing a child is very special because the most deep-seated protective and nurturant emotions are brutalized. Because this “injury” is so severe to such primitive emotional processes, the grieving parent is likely to feel and express the pain associated with it for the rest of his or her life."

Indeed.

Dr. Joanne Cacciatore said...

Thank you Chaplain Sue and Yasaman for sharing your personal and professional expertise. Profound wisdom of the heart.

Joni- your grandbaby is never forgotten here, nor is your pain. Bowing to your heart...

Carla Hoffmann said...

My heart breaks when I think of all the bereaved that *will* be drugged after just two weeks after the death of a loved one just because the DMS-5 says that fourteen days is enough to diagnose a major depression disorder.

My children died 15 and 14 years ago. I still cannot recall what happened during the first month after their deaths. Was I presenting symptoms of major depressive disorder? I am certain that I did: I couldn't sleep, I could not concentrate, I was sad and crying most of the time, my eating habits changed and surly enough I wanted to die.

Was I depressed? NO. I was grieving!

I wish the APA had not lost compassion and bowed to the pharmaceutical companies.

I feel sorry for the future of humanity if sadness and grief are considered a mental illness... There will not be any room for compassion and care and love and human connection...

Ashley said...

In the 4 years since my daughters death I have not once been on medication. There were times in the beginning when I really considered being put on something and was actually encouraged the person I trusted the most at the time. Something inside me told me that, that wasn't the answer. My grief was slowly killing me and I figured medication wasn't going to bring my daughter back so I sought help in a different way. I learned to carry my grief in the best way that I could, by talking. I went to support group, got counseling and was heard. I was no longer alone in my grief. I was lucky enough to find a therapist who was willing to sit with me, hear my pain,walk with me on my grief journey. My therapist was gentle and compassionate and allowed me to work through my grief and not numb it away with medication.

I am so grateful that I did not decide to take medication to "take away" my pain. Nothing can take my pain away, but there are so many better alternatives to learning to carry the pain and medication is not the answer. People need to be given the chance to grieve their loved one especially those who have lost a child. Being given a diagnosis of major depressive disorder just 2 weeks after a death is simply not fair or right.

Grief is love.

Thank you,
Ashley,
Mckenna Jodell's mommy

Anonymous said...

Revised Dec 7, 2012
I am a bereaved mother and a health professional.

When working on the frontline and are faced with a newly bereaved patient whose child has died two weeks ago, there is a reasonable chance, based on clinical judgment that a seasoned health care professionals will be uncomfortable with making the diagnosis of depression.

In fact, I have colleagues in the field with whom I have shared the APA’s views. Their responses include “that’s ridiculous,” “that’s crazy,“ and, my favorite, “we’ll just ignore it.” Thankfully, these frontline professionals will have their own life experience and matured clinical judgment to practice otherwise. Unfortunately, though, when it comes to interacting with bureaucracy, they will be handcuffed to the DSM-5.

I fear for the students/trainees who will be introduced to the DSM-V. As we know, students/trainees study guidelines and try to impress their teachers with their use. A whole new generation of practitioners will now label bereavement as depression. This will not only affect their patients, but also their own inevitable experiences with grief and loss.

The removal of the BE will undoubtedly compromise the clinician-patient relationship. Imagine, for example, a clinician saying to the newly-bereaved patient: “You are depressed” rather than “what you are experiencing is a normal part of grief.” Thankfully, I, myself, was not labeled as depressed by my provider after the traumatic loss of my baby.

Furthermore, the management of depression is not the same as bereavement care—and most definitely not in the two weeks after a child’s death. Having managed depression myself, it does not compare to the type of bereavement care like that provided by Dr. Cacciatore and the MISS Foundation. More importantly, medications would have prevented me from addressing the grief.

You can see the potential consequences on patient outcomes, clinical practice, and our culture.

Dr. Pies, as a health practitioner:
Rather than moving towards the cookie-cutter practice of Psychiatry and lumping bereavement in with depression, I urge you to ensure and advocate for the practice of evidenced-based bereavement care.

Dr. Pies, as a bereaved mother:
Evidenced-based and compassionate bereavement care, like that practiced by Dr. Cacciatore, works. I am not depressed. I am not on medications. I am on the path to integrating my grief for the death of my child, not only into my life, but also in my practice. If I was labeled as depressed at the outset, this may not have been my path.

Anonymous said...

I would also like to thank Dr. Pies for engaging in this very important conversation. I would like to mention an issue that seems to be overlooked in this debate: providers can and often do override the bereavement exclusion and diagnose Major Depressive Disorder in the context of bereavement. I do not know of any evidence showing that people are prevented from obtaining treatment, either in the form of medication or psychotherapy, because of the bereavement exclusion.

At any rate, I think the question of access to treatment and reimbursement is a separate issue that requires a larger discussion about the meaning and role of the DSM. Desiring to serve the needs of individuals who are suffering is a compassionate and noble goal. However, as long as the DSM considers all of its included categories to constitute biological, brain-based mental diseases, it seems highly problematic to create or expand categories simply to improve access to services. Doing so does inadvertently medicalize psychosocial problems by relabeling them as biological deficiencies. I should also note that there are no known biological causes of any mental disorders, and yet this is the paradigm to which the DSM adheres.

Perhaps we need to revisit the very concept of what the categories included in DSM actually represent? If we were to abandon the poorly supported medical model and simply include different constellations of psychosocial suffering, I do not think there would be much objection to including grief-related problems in such a system. We certainly do know that bereavement, especially when the loss is traumatic, such as the death of a child, calls for compassionate and empathetic support from professionals and the entire community.

Sincerely,
Kara Thieleman, MSW, Grief Counselor

Amelia Flores Barrios said...

My name is Amelia Flores. On Dec 6 2008 we were victims of a very violent attack. I was going through a divorce and my ex-husband was in disagreement. We had been separated for a couple of months and he wanted to stop the court appointments. I refused because I no longer wished to be married to him. He was verbally abusive. Long story short, I had 2 beautiful little boys from a previous marriage and one with him. My boys were 8, 6 and 2. My mother took care of them while I attended school.That fateful saturday, I attended a substitute certification class all day and a honor society induction ceremony at night. When I got home, he was waiting for me and attacked me in the darkness of my parent's kitchen. I had moved in with them. He beat me and shot me twice. I could hear my baby crying in my room while he was attacking me and thought he was crying because he had been left alone in the darkness. My son had been with him the the day before. My thoughts were that he had gone to drop him off and that my parents and older children were not home. After he shot me the second time, I could no longer continue to fight him so I collapsed and pretended to be dead so that he could stop beating me. After a while I heard my fathers truck and saw him point the riffle at the door my father was supposed to come in through. My father gratefully came in through another door and was able to fight him, take the gun away from him, and rush me to the hospital. He went back to the house with the police after they took me in for medical care. I was in a coma for a couple of days. When I woke up, I woke up to a much worse nightmare. On thursday, I was informed that they were burying my mother and children. I walked out of that hospital against my doctor's orders that next saturday because I was so angry at everyone for telling me such a spiteful lie. I was in denial for a couple of months. It wasn't until my baby's 3rd birthday on April 13 that I realized they were not coming back. I had the realization that my baby was crying that day because he had been shot multiple times and was scared and dying.I was sad before because I missed them, but realizing I was never going to see them again pushed me into a great sadness that I probably will never be able to explain. It has been one of the hardest things I've ever had to deal with.

I want to make something clear, I never stopped doing anything I was doing before because I had great people around me that supported me through that difficult time. I went back to school in January and was offered a job to keep me busy. Two of my professors were my biggest supporters, Dr. Ernst and Dr. Richardson. They were, and continue to be, the father figures that I needed because my father was dealing with his grief in his own way and I couldn't rely on him for a very long time. He and my brother are still dealing with our loss. We all are.

Cont'd below

Amelia Flores Barrios said...

I had many health issues and to this day continue to have doctor visits related to the physical damage I received. I also saw a psychologist for a long time. Every doctor I have seen has prescribed medication for my sadness. It made me very angry at first because they expected me to be happy and not cry! How could I restrain myself from crying? I miss them terribly. They are the love of my life. I complied for a couple of weeks and took the medication they prescribed and it only made me feel worse! I could not concentrate and felt like a lifeless zombie. They said I had to take it for a couple of weeks so that I could get used to it. I never did so I stopped taking all the antidepressants.

Four years later, I still cry for them once in a while, but I have learned how to cope with it. I strongly believe I would not be doing as well as I am if I would have not been allowed to cry and grieve over their loss. I have cried my eyes out many times and somehow it makes me feel better after. I am a daughter who lost her mother and a mother who lost her children. I have the right to cry over them. I am a human being that has feelings NOT a tearless robot.

I strongly disagree with the decision to make grief a mental illness. Grief is a normal part of a human's life. Having people labeled and medicating them may prevent them from ever having a normal life. Of course they will be extremely sad after such a great loss, maybe even feel a little depression, but having the opportunity to learn how to cope with it without being medicated and labeled will be better for their future in the long run.

I do not support the decision to add grief as a mental illness in the new version of the DSM.

Ronald Pies MD said...

I'd like to thank those who have commented on this very emotional topic, and I appreciate Dr. Cacciatore's willingness to consider the "other side" of this debate.

The DSM-5 is now a settled document, and all of us will need to find a way to live either with it, or without it. However, I do want to emphasize that the DSM-5 does not "turn grief into a mental disorder," nor does it advocate inappropriate medication for the grief of bereavement.

Of course, it is possible to point to instances of bad medical management of grieving persons, but this is not an argument against removing the bereavement exclusion (BE). Rather, it is an argument for better education of both the public and health care professionals, regarding the substantial differences between grief--yes, even very intense and prolonged grief--and major depressive disorder (MDD).

For those who would like to delve, and understand more fully
the differences between grief and
MDD, I have provided some additional references that are easily available on line.

This will conclude my participation in this exchange, at least in the short term, and I thank readers for their sincere contributions to the discussion.

Respectfully,
Ronald Pies MD



1. There is an excellent video with Dr. Kay R. Jamison, who explains some of the key differences between grief and major depression:
http://bigthink.com/ideas/16707

http://psychcentral.com/blog/archives/2011/02/23/the-two-worlds-of-grief-and-
depression/

http://psychcentral.com/blog/archives/2012/02/28/how-the-public-is-being-misinformed-about-grief/all/1/




Anonymous said...

I lost my infant son 6 years ago. He was a preterm baby and passed away from complications from surgery. I was immediately loaded up on benzos and antidepressants. I was numbed up for a good three months during that time all I hoped for was death. i thought it was wrong to openly grieve. i thought it wasnt allowed because of all the meds i was put on, i thought anything i felt i wasnt supposed to. i still feel as if people will judge me if i grieve now, six years larer. I decided to taper myself off all meds the next year and have another baby. I have a a healthy happy son but I cannot even touch on the subject of my first born without breaking down completely, due to my never grieving properly at all. I feel if I had been given or had given myself the opportunity to properly grieve the healthy way I wouldn't be the way I am. A lot of death has occurred around me and I can't even attend family members funerals because I'm afraid it will open up the ticking time bomb of grief I have inside my head and heart.

Anonymous said...

In my early twenties, I visited a couple of different therapists at my mom's request because she thought I was depressed. Neither one told me they thought I was depressed, even when I flat out asked them. The second doctor did attempt to medicate me however.

In another move to appease my mom, I agreed to go on meds. I settled for the first dosage of the first medicine he prescribed. Probably so I could say I was on medicine, just so my mom would leave me alone. I was always so distressed by the idea that there was something wrong with me that I was completely unaware of and unable to recognize. I was truly worried because my mom seemed very concerned and genuinely tried to help.

Since the death of my first son Henry, I know what sadness feels like. I know what emptiness, loneliness, longing, isolation, fear, panic, guilt, self doubt, jealousy, and total lack of motivation feel like. The important difference however, is that I am able to recognize these feelings. I know they are a part of grief.

When I'm not sure if I'm reacting to a situation "normally" I check in with people who are also grieving. I usually hear something to the effect of "I remember when I did..." I also check in with my mom and best friend. Both generally seem impressed with how I am doing and regard my missteps as unimportant and forgivable. I also talk to my therapist. One I see regularly, by choice, who has really helped me through a lot. She is also a bereaved mother. I truly feel that either of the therapists I had before would have put me on meds by now, just based on their lack of experience with grief.

Much of what doctors and therapists initially know about a patient is reported by that patient. A follow up question of "did you have any of these feelings before the death of you child?" Could help determine if the patient may have underlying depression. Before Henry, I still had a lack of motivation.

Two weeks is not nearly enough time to recognize which patients are grieving and which patients are depressed. It took me longer than that to reach out for help. The help I sought was the MISS forum, where I could be with people who were like me, who could understand me, and not shy away from the pain of being around me. I also found a therapist about a month later. I have read posts and talked to people and though to myself that what they said didn't seem particularly "healthy". I felt that a couple of them would really benefit from seeing a therapist- but not if that therapist is just going to medicate them.

My real concern is that grief is not really understood until it is experienced. Grief is uncomfortable for others, it is messy, and it can make you a person who doesn't function well in society some days. I am very worried that now, people experiencing grief will have to advocate for themselves at a point when they are most vulnerable and unable to do so.

Early in grief, I did not know what was normal. I didn't know if I would ever feel happy again. I didn't know why I would go to a store and feel anxious. I didn't know when I would stop absolutely hating the less than perfect parents of the world. I was alarmed at many of the feeling I was having, and I didn't feel like myself.

Two weeks after a major life changing event is an inappropriate time to evaluate whether or not someone is depressed.

Christine Grothe said...

Eleven years ago I was pregnant with my third child. I was 37 weeks pregnant and on June 3, 2001 I woke up and she didn't kick. The doctor told me I was probably in preterm labor and that I should come up immediately. It wasn't what I expected. The nurse told me that she couldn't find the heartbeat. The doctor came in, confirmed Nora had died and I was induced.

What happened next was a nightmare. As I delivered my perfect little girl, I had a uterine rupture that put me into a coma. I woke eight days later only to be reminded that my baby had died and that I too had almost died. I was devastated and was in shock. My own recovery came first, so for the next week I was focused on learning to walk again and to get my health back on track. The night before I was released from the hospital, my husband showed me pictures of my little girl. I have never met her because I went into the coma before I saw her. I thought my world was ending. I had a very difficult time understanding that I had to meet my daughter through a photograph. I couldn't comprehend. I cried until there were no tears left. The doctor came in, first to tell me I would never carry another child and secondly to assure me she could take care of this pain and prescribed 3 anti-depressants. Three. I was so drugged when I arrived home. I found out that I was to meet my daughter in the funeral home so I stopped taking everything so I would have some memory.

I met my daughter and held her and the tears didn't stop. After the funeral, the doctor advised me to continue taking the pills to help this unimaginable grief. I did because I didn't understand what to do. No one sat down with me. I was a zombie, I didn't cry, nor did I feel or laugh. I didn't do anything.

It wasn't until I found others that had lost a child that I understood that what I had been feeling was normal. It was okay to cry, to not sleep, to not feel like eating. It was okay to feel the pain of losing Nora. I stopped taking the medicines and I walked through the grief. I had the MISS Foundation to hold my hand in the darkness, I found friends who were there for me. But I felt something and I was able to mourn my daughter.

I have never gone back to medications. I have found that grief comes and goes but you do find light. You have to grieve, you have to cry, you cannot shut down the pain you are feeling. I am so upset that now parents will be made to feel that after two weeks it is not okay to cry, to think that it is not normal to be in moments where your heart is breaking because your child died. Doctors will prescribe medications to ease their suffering, to block their pain after only two weeks.

Toren's mom said...

Our son Toren was stillborn due to an umbilical cord accident in January. Grief has been very confusing and I've had to figure it out through a combination of talking to other bereaved parents, reading, finding a compassionate therapist who gets it, and thanks to organizations like the MISS Foundation. I am sad, I am angry, I am frustrated, I cry, I scream, I have moments of gratitude and compassion, I feel crazy, I think about dying, I just want to be DONE with all this grief shit. It's a mix of totally unpredictable, confusing emotions, sometimes one on top of another. I can't imagine drugs helping me figure it out. Or a clueless therapist. When our son was first born, I thought I could stop the grief. No one at the hospital was able to shed any light on it whatsoever. Now, almost a year later, I know I need to be in it. In the grief. I'm *supposed to* feel sad, angry, crazy, etc. It was harder to try to stop it. The thing that has helped me the most is connecting with other grieving parents. I am wary of medical people because they seem to not know anything about grief. I don't really need anything but understanding and if that's not possible, acknowledgement. I worry about newly bereaved parents not being properly understood. It doesn't sound like this change to the DSM is going to help with that.

J.S. said...

October 30, my beautiful son, a police officer, took his sidearm, placed it to his temple and pulled the trigger. He was twenty five. Over a girl, a silly, manipulative, little girl. I was right here when he did this. Right here.

My world has spiraled out of control. I feel as if I am on a slow walk to insanity. I do not eat, nor sleep. I avoid people at all costs. I work, but am fairly ineffective at it. I cry all the time. I do not ask why, I know why. I ask how.

There is much I no longer understand nor do I try. I am void of all caring and motivation. I exist. I go through the motions and I exist. I am in shock, I am numb, I am despondent, I am a hundred things which I cannot describe.

After a month of not sleeping, I decided I would try a doctor for some help. All he wanted to do was discuss at great length if I was going to hurt myself. I told him “no” repeatedly, but he kept at it. Can you imagine how painful this was for me? Considering my situation, to be strongly grilled on my “intentions” was awful. He repeatedly suggested a mental health referral. I kept telling him no. I wasn’t ready. I was in a support group of people just like me. They were helping. I had a place to talk, to cry, to be supported. I was surrounded by people who know exactly how I feel, for they too lost their child. He didn’t care, he wanted me to see a therapist. In my mind, why would I pay a stranger, who probably has never lost a child, let alone have their child shoot themselves in their home, in their presence; why would I pay a stranger to help me? This seems illogical to me. Yet he insisted.

He finally gave up, provided me with 15 ambien knockoffs and sent me home. Now, I sit here, wide awake on ambien writing you.

My experience is horrific. I would not wish this on my worst enemy. I am grieving. In the worst way possible, I am grieving. I have all of the symptoms of grief. I don’t want an anti-depressant. A pill will not make this go away. A pill will not make this less painful. A pill will inhibit the flow of my grief and prolong what is already an indescribable experience. Why am I not normal because I understand this about myself? Why can I only grieve if I am with a “licensed therapist” on some pill.

I have suffered the worst, most unimaginable horror, my child killed himself in front of me and I was powerless to prevent this. I would not wish this on my worst enemy. My experience makes me many things. It does not make me mentally ill and it is important to not label me as such. I have already endured, am enduring the most painful experience of my life. Please do not compound this by telling me that I have a mental disorder, that I am sick, that my brain no longer functions correctly.

I am not sick. I am not mentally ill. I am grieving. I am grieving.

Dr. Joanne Cacciatore said...

The sorrow, anguish, courage, despair, and profound love that has been shared here truly humbles me. Thank you for entrusting me- the world- with your story, with your Beloved.

I am so very, very sorry. Beyond all words, so sorry.

Karla Helbert, LPC said...

As a mental health care practitioner and a bereaved mother, I feel I must add my comments here. In concert with Dr. Cacciatore I also appreciate Dr. Pies’s willingness to engage in a dialogue on the topic of the removal of the bereavement exclusion from the DSM5. However, I must say that Dr. Pies’s comments leave much to be desired in the way of resolving this problem for thousands of providers and multitudes of bereaved. The plain truth is that the symptoms of grief and the symptoms of depression, including Major Depressive Disorder, are virtually indistinguishable. The difference is that the symptoms of the bereaved have very specific causation. What exactly are the numbers of individuals who may be experiencing onset of MDD 2 weeks post death of a loved one who might run the risk of remaining undiagnosed? These unrecognized sufferers for whom the DSM 5 will provide such caring protection, ensuring that they will not be disqualified from a rightful diagnosis of MDD “simply because their depression occurred in the context of a recent death.” What are the numbers of people who have gone undiagnosed, who have not received proper care and treatment, medical and non-medical because of this sort of error? Where is the research on the risk of “shutting them out of mental health treatment”? I find it difficult to believe that Dr. Pies actually believes this is a good reason for removal of the bereavement exclusion. Also, his statement that treatment does not imply just “medication” is astonishing to me. To say that part of the goal was to ensure that potentially depressed people not be shut out of psychotherapy is equally astonishing. There are far more people taking medication alone to treat symptoms of mental health disorders (without engaging in psychotherapy) than there are those who are utilizing a combination of meds and therapy, or engaging in therapy alone without medication. The number of professionals, OB/Gyns, primary care practitioners who hear their patients discuss symptoms of depression (within or without the context of a recent death) and recommend psychotherapy in the absence of discussion, suggestion or prescription for some type of pharmacological relief of symptoms is incredibly rare (if it exists at all).

Continued below

Karla Helbert, LPC said...

Yes, there are many caring practitioners who will offer the name of a therapist, but many don’t. But most will certainly scribble out a script for Wellbutrin or Zoloft or and maybe some ambien and certainly a benzo to “help” with sleep and anxiety). In the presence of a recent death, particularly a traumatic one such as the death of a child, most practitioners, even those with the absolute best of intentions, are ill-equipped to deal with their own uncomfortable feelings and typically want to get away from the upsetting situation, at the same time feeling they are helping their patient by doing their best to ameliorate the symptoms. Once the patient gets to a psychiatrist, then it’s highly likely the medication regimen will be expanded to include the addition of an anti-psychotic to help with the “efficacy” of the anti-depressant. Dr.Pies surely must know that the evidence that these medications actually work to effectively treat depression long term is scant. Even those who actually do have MDD are not guaranteed remission of their symptoms with medication and often they are exacerbated. The truth is that bereaved people are medicated frequently and many of them are in such a state of emotional shock, numbness, and/or pain that in the moment they simply want to feel better or simply do what their doctor is telling them in good faith. Considering the lack of willingness in our society to tolerate the deep pain of others in bereavement, they often have no idea that what they are feeling is absolutely normal. Excruciating, but normal. More bereaved are harmed daily simply by the lack of the world at large (medical professionals, family, friends, co-workers, neighbors) to engage with them, to be with them, to see them, to recognize that they are in unfathomable pain, than are those with MDD by the existence of a bereavement exclusion in the DSV-IV.
And as others here have mentioned, what of the next generations of practitioners who will be brought up on this new DSM? How are we to ensure that they will be applying diagnoses as carefully and conservatively as Dr. Pies seems to envision? Without training on what bereavement is, what it looks like, how it presents, how it walks, talks, feels, and in particular for cases where traumatic death has occurred, including child death, how in the world are we to imagine that these clinicians, who are not specializing in grief and bereavement, are to judiciously pick the two apart (MDD and bereavement)?
As a bereaved mother who, nearly 7 years after the death of my son, still grieves daily, and can still can be laid low by the agonizing pain of the recognition that my entire life continues to stretch out before me, with his absence a daily reminder of the pain, I fear for the many bereaved who will come after me. I fear for those who will not receive the appropriate treatment and care they need and deserve, and who will be much more likely to be given medication to ameliorate their “depressive” symptoms as well as labeled with a diagnosis of a mental illness they do not have. It is difficult not to feel righteous about this. How can such blind eyes and deaf ears continue to be turned on this community of the bereaved by those who say they seek to help, to heal and to do no harm? Where are the real, solid answers that can make sense to us?

Shauna said...

I am a bereaved mother. I have never been an advocate of medicating normal human emotions; however, I probably would not have had the presence of mind to refuse a prescription in the days following my son's death. For me, the right people were there at the right time.

When I was 22 weeks pregnant with Weston, I had already been on bed rest for ten weeks and in the hospital for two weeks. I had an ultrasound, and I could tell that the results were very bad, but my physician would not be there to discuss the results with me until the next day. I hardly slept. The next morning, my physician entered my room and told me there was essentially no hope for my baby's survival. He did not make eye contact with me during that conversation and ended it by saying, "I'll write you a prescription for a sedative and a sleep aid. It's perfectly acceptable to take them as you wait out this uncomfortable situation." Then he left the room without a good-bye or backward glance.

This whole exchange was quite paternalistic, among other things. As long as I was a hospital patient, the staff was going to have to "deal with" me, the crazy emotional pregnant lady. Never mind that I was essentially waiting for my baby to die. I was a problem, a headache they didn't want to deal with.

My nurses, on the other hand, were wonderful. They sat down and talked to me. When I expressed hope and intuition that my baby was OK, they affirmed and encouraged me. I would have never made it through without them.

But after I got the news from my physician, I was hysterical and could not let my young daughter see me in that condition, so I took the sedative. As time went on and I remained pregnant, I did not touch another pill. I just talked to the nurses.

Weston defied the odds (for a while) and was born alive at 24 weeks. He never left the NICU. He died three weeks later in the same hospital where he was born.

The hysteria I felt when I thought I was losing Weston during pregnancy is nothing compared to when he ACTUALLY died. That goes without saying. However, when he died, I was not a hospital patient any longer, so no one offered me a pill. As I stated earlier, I would have blindly accepted what anyone offered me in those days, so I think it is merely a stroke of luck that no one offered me a pill.

Instead, the hospital social worker gave me a stack of resources for parental grief, including a pamphlet for the MISS Foundation. I started attending support groups and other activities immediately, where people, including some of the previous commenters, LISTEN to me. No one here thinks I am crazy, and they are walking through my grief with me. I am allowed to feel the pain of losing Weston without shame or self-consciousness. We grieve because we love. Why would I want a pill that would make me stop loving? How would that help anything?

I had a c-section with Weston, so I had a post-operative follow-up appointment a few weeks after Weston died with a new obstetrician. I got lucky then, too; she did not prescribe, or even offer, medication. Instead, she gave me a list of counselors to call.

No pill will take my pain away. No person will take my pain away, either. But I would much rather be kept company on this lonely, isolating journey of grief by people with kind, listening, and non-judgmental ears than a bottle of pills.

Dr. Joanne Cacciatore said...

(((Shauna))))

I'm *just* so sorry...


Sarah said...

Our son was born still 10 days before my due date. A full term beautiful baby boy. It was at a routine visit for a growth ultrasound and to further discuss my delivery plan that we were told " I am sorry, there is no heartbeat". From there life spun out of control. I was admitted to the hospital, induced, and after a very long labor (2 days), I had a C-section because the umbilical cord was wrapped too tightly around my son's neck to deliver him naturally. Due to medical challenges and extreme blood loss, I was not cleared by my medical team to fly East, where our son was being buried, for almost 2 weeks after his birth. Two weeks after Noah died, we buried him. We were in shock, raw, crying, angry, numb, hysterical, not sleeping, in disbelief, eating sporadically, barely existing. Mother’s day was the week following Noah’s funeral. We didn’t get out of bed. His death certificate arrived in the mail. Many days during those first few weeks we didn’t get out of bed. We didn’t check email, read cards, open bills, return phone calls, respond to text messages, or leave the house. Some family members encouraged me to take medication. I boldly informed them that I was not medicating my grief and that nothing could cure this pain.

At my six- week post-partum follow-up visit, we walked into the office of my OB/GYN. We sat in the waiting room, the same waiting room we had sat my entire pregnancy. My heart raced, my blood pressure went through the roof. I looked at all of the pregnant women and newborn babies that surrounded us. Our life had become a nightmare. When I went to check-in at that appointment, I was handed a clipboard with the Edenburgh Postnatal Depression Scale. The instructions read: “As you have recently had a baby, we would like to know how you are feeling. Please UNDERLINE the answer which comes closest to how you have felt in the past 7 days, not just how you feel today”. I did not fair well on this depression scale. I was appalled that there was such insensitivity in the paperwork that I received, I wrote all over it reminding my doctors that my child was dead. When I met with my OB/GYN, she informed me that I was severely depressed but that my responses were aligned with my grief and the traumatic death of my son. She spent a lot of time with us. She was compassionate. She answered some of our questions but did not have the answer I most needed. WHY??? She didn’t offer medication but did make sure that we were getting support.

It has been 32 months. Early in our journey, we stood barefoot, on top of a mountain, overlooking a big horizon. We stood with strangers, strangers who have become friends. The most compassionate and heartbroken parents who are also grieving. I was told “one day I will become larger than my grief.” With tears streaming down my cheeks, I fully believed that this was possible. One day I will be larger than my grief. It is this community that has allowed me the freedom to grieve without limits and without judgment.

Two weeks, after a major life event, is certainly not enough time to determine if a person is depressed. I do not support the bereavement exclusion in the DSM-5 and labeling grief a mental illness.

Tresa Crowley said...

I would really like someone to define "normal" grief for a parent who has lost a child. I am a CNA in an Alzheimers unit and I deal with "normal" grief of a loved parent, grandparent, or spouse. I am also a bereaved parent and have a sister who has also lost a child. I can tell you from personal experience that "normal" grief does not apply to those who have lost a child. It is a different form of grief. It is more intense, and the symptoms last much much longer. We lose our grandmother, and we are sad, maybe for a while. And then life moves on. We lose a child, and we fall apart. Life stops and the sadness NEVER goes away. That does not mean I am depressed. Or that I do not function in the world and live my life. I am less than a year into this journey of grief. My sister is 10 years into her journey. Neither of us needs medication, but our grief looks roughly the same from the outside. Even with 9 years of time seperating our loss, our lives and our grief are amazingly similar. Which just proves to me that this is what "normal" grief for a parent who has lost a child looks like. And to be medicated, or labeled as depressed would have serious long-lasting effects on our lives. My sister and I would most likely lose our jobs and perhaps our living children would be taken away because of their "mentally ill" parents. Because of this lack of respect for the grief process unique to our situation, we no longer feel safe to pursue mental health services.

Anonymous said...

This comment is primarily for Dr. Pies and those who share his opinion. I am a bereaved mother. I lost my son almost five years ago now. I still miss him everyday. I still have his pictures up on my walls. I still write about him, think about him, celebrate him and mourn him. When I first heard about the DSM-5 adding grief I honestly thought it was a great idea. I thought just as you posted that it would allow women or men like myself the ability to receive medication (which I never took) if they chose to in a much easier way. This sounds like a kind, compassionate thing to do. It seems diagnosis these days are less about what things really are and more about drug companies, pre-existing conditions, workman's comp and the like so why not play the game in the favor of the bereaved? But something felt off with it and I couldn't understand what I must be missing. Then I read much of what Dr. Cacciatore wrote and simply thought about it from the other side...oh dear...we would be making grief pathological....hmmmm....that doesn't sound good or right. Even if it does have the potential to make it easier for some to receive medications it makes it doubly hard to make it out of loosing a child still labeled as "normal" and harder to go through grief without being recommended medication which may really not be ideal for some. For those who have not lost a child, I don't dream that you can come even close to imagining what it can, and usually does, feel like. I personally was very very very depressed, suicidal, cutting, endlessly crying for ages. I don't know how long, months, years, the days rolled by without my notice, but why would anyone expect less of a reaction to loosing everything. Isn't that worthy of all of our feelings and being allowed to feel them and still be a "normal" human being? Why can't we feel anything anymore except on a very narrow spectrum without it being labeled as pathological? I think that if someone needs and desires medication, then it should be made available to them. However, I would easily imagine that the death of a child would push most people "over the edge" and should we be thinking about medicating all of them lest they be crying for more than six weeks? Really? Really? I am now so afraid of what this new DSM-5 will mean to bereaved mothers like me, to mothers who miss their child with unfathomable longing and feel beyond horrible only to be additionally insulted by being labeled as something is wrong with them and that the experts say they actually shouldn't be feeling the unfathomable longing outside of six weeks or so. It is my belief that most practitioners are very kind and compassionate to their patients especially regarding the death of a child, but this word, this label, this entry isn't personal and the the least vocal among us are at potentially greatest risk of being railroaded by a system (not a person) into being labeled as crazy. I lost my mind losing my son, but I think that was supposed to happen. He deserved to have the old me die with him. The new person I became through my tears is far deeper, more compassionate, more empathetic, and a better mother to the little girl who came after him. I cannot help but fear that had I been labeled as this new DSM-5 would have me so that I would have had a different, darker, scarier path and perhaps even held away from my precious daughter. Could a court in some foreseeable future ever think me not good for her had I been labeled as mentally ill? I truly shudder to think.

This saddens me beyond belief. No anger towards any one person, but a deep fear of what it means for my grief-sisters and brothers. I daresay, I won't be recommending any newly bereaved to the profession that has, arguably, the greatest potential to help them as a result of this...such a loss to so many....

Anonymous said...

I lost my 20 month old daughter in 2001... I just now a year ago got on Zoloft it was a life saver for me I really wish I hadn't waited so long to get medication.. Dr. Told me I would be on it for the rest of my life!

Anonymous said...

A week after my son died at one day old, I asked my OB for something that could bring my appetite back. She said there were things she would give for a "normal" patient, but that I should go to a psychiatrist, instead.
A week later a psychiatrist put me on Remeron. My weight shot up, which is very problematic because I was overweight + postpartum to begin with, and I told my doctor it was very important to me to be in good physical health to conceive my next child, and at age 39 I don't have time to wait.
I stayed on it for three months and I gained 30 pounds before I decided to go off the medication. I told my psychiatrist what my decision was, and he said it was fine for me to just go off of it, as my rapid response to it was an indication that I was just getting a placebo effect from it. Huh! Placebo effect, or the normal change in intensity of grief following a traumatic death?
I believe that if my OB had just listened to my initial concern that I needed some help getting to eat again - like maybe "try some ice cream, Kate, or a protein bar," - I could have saved myself many months of struggle with the effects of unnecessary psychotropic medication.

Anastasia said...

I am profoundly moved by the things written here. I too have known profound grief over the loss of a child - a loss I grieve still, even though it has been many years.

I am appalled and horrified that grief will be conflated with mental illness and depression. Through the long years of my grief, I refused medications, though I was going on intuition rather than knowledge at that point. I would never deny help or comfort to those who need it, but after reading the comments on this page, I feel my intuition was right - that sometimes the only way out is through and that numbing "difficult" emotions only serves to prolong them in a way that IS pathological.

Anyone, everyone, who has grieved and grown needs to educate those around us about the true nature of grief - that it is the nature of life and love and that it ultimately deepens life's meaning. We must also support the bereaved as they come to us in life because this is meant to make others more comfortable, not help the bereaved.

Thank you Dr. C for fighting the good fight - even with the DSM V in place, we must all continue to do so.

Love and condolences to all here and all who are grieving.

Brettina Mendoza said...

I really enjoyed reading your blog. My birth trauma lawyer who has been so serious about life paused for a while and read your blog. He enjoyed it. Thanks for sharing!

Becoming...

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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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