Relativity applies to physics not ethics.
-Albert Einstein
Preface:
If you're not sure this is relevant to you, skip down to the P.S. at the bottom. It may change your mind. Then, read and share.
For more than a year, I've been struggling, both professionally and personally, with the proposed changes for the
Diagnostic and Statistical Manual 5 (DSM), even writing letters and expressing deep concern to colleagues in the 'mental health' field. Despite an urging from others to speak out, before today, I've remained silent in the hope that reason might find its way into the discussion about grief and the DSM.
The change that most concerns me has to do with the "bereavement exclusion"(BE). In the current manual, the DSM IV, this exclusion means that a person who has
suffered the death of a loved one may be diagnosed with Major Depressive Disorder (MDD) no less than two months following the loss. Prior iterations, the DSM III, stated one year.
The new DSM 5, with a planned release date in early 2013, however, has again reduced that prescribed time frame from two months to
two weeks, further pathologizing the authentic human experience of
sorrow. So, a person may, at the discretion of a psychiatrist, social worker, or psychologist, be categorized as "mentally ill" as soon as two weeks following the death of a loved one. While I don't like or agree with
either 'time limit', the arbitrary absurdity of "14-days post-loss-then-becomes-depression-label" has ignited a fire in the pits of my being against the DSM machine.
And I'm not the sole adversary.
This change occurs against a
historical DSM backdrop of salient criticism relative to the
medicalization of normal human emotion, clinical hubris, cultural incompetence and insensitivity, questionable relationships with
pharmaceutical companies, and ethical misuse of such
nosological systems.
Supporters of this draconian change tout the logic: Mourners will be able to get mental health care for grief. Grief can turn to depression, and the depressed need mental health care. Insurance providers will cover services for depression.
Critics are vast and outspoken and profoundly credible. Allen Frances, M.D., professor emeritus and former chairman of Duke's psychiatry department says this move "
reduces the normalcy and dignity of the pain" of loss, and that the DSM 5 will "
take psychiatry off a cliff." An editorial published in
The Lancet on February 18, 2012 called this move "
dangerously simplistic" and "
flawed." They direct physicians to offer "
time, compassion, remembrance, and empathy, not pills."
Ah, of course.
Pills. The contentions of the supporters of the DSM 5 are neither convincing nor compelling for me given both my personal and professional experiences; unless, of course, it's about elastic ethics. That is, having a document- what is known euphemistically as the
Bible of Psychiatry- which sanctions the use of
psychopharmaceuticals as a first line of treatment for bereavement. Though their qualities are often
indistinguishable, grief is not depression. There is a difference between endogenous melancholia and reactive sadness.
Stephen Diamond's list distinguishing normal grief from
Depression (capital "D") is most certainly a Venn diagram. There is so much symptom overlap, however, that
most clinicians would encounter great difficulty distinguishing one from the other. Truly, we have become an increasingly intolerant society that is transforming "
normal sadness into depressive disorder" (
Horwitz & Wakefield, 2007).
The healing from the pain is in the pain.
-Rumi
And for either state- grief
or depression- a pill is a
poor substitute (and according to
Kirsch et al (2008) not any more efficacious than a well-placed
placebo) for human connection, caring, and compassion. Quite poor actually. We can never derive what we need during suffering from
a pill or a bottle. What we desperately need in our world is a willing
witness to our suffering, someone who will join us with full presence and mindfulness. The Lancet editorial captured, beautifully, what it means to be a consummate psychiatrist for the bereaved: time, compassion, remembrance, and empathy.
In fact the word
psychiatry comes from two Greek (
ψυχιατρική) words:
psykhe meaning mind and
iatreia meaning healing and caring. In French, the literal translation of
psychiatry is a "
healing of the soul." A pill will never heal the soul of a person in mourning. Brief, laconic treatments, as the great psychiatrist,
Irvin Yalom says, are not best practice for patients. Rather, they are best practice for managed care systems and the psychotropic medication industry which insist on rapid cures for the incurable and place more value on profits than people and relationships.
I don't heal people. I help them be with what is true.
The healing comes from that.
-Robert Hall, M.D.
Being with what is true hurts. It hurts a great deal. And it takes time to unfold into its own change. Yet, psychiatrists have capitulated to an antithetical system of caring which Yalom calls "
inexpensive and perforce, brief, superficial, and insubstantial" and "
rather, specializing in psychopharmacological based laconic interventions". Similarly, Sigmund Freud warned against
furor sanandi, the rage to cure.
Modern psychiatrists have, more recently, sounded that same alarm only to fall on intransigent ears and hearts.
Sadly, other mental health professionals who are, in fact, helpers to those suffering but who remain silent become co-conspirators in this social and ethical blunder.
Washing one's hands of the conflict between
the powerful and the powerless
means to side with the powerful,
not to be be neutral.
-Paulo Freire
As a bereaved parent myself, I have one foot in the world of practice, one foot in the world of
nonprofits who serve bereaved parents (
MISS Foundation,
Parents of Murdered Children,
Ronan Sean Thompson Foundation,
Compassionate Friends, and others), and the other, third foot, in the empirical world of academic research. I've been working with the traumatically bereaved for 16 years. I've been researching them for nine. I receive an average of 150 emails a day from bereaved parents around the world. Stories of love and loss, sadness and suffering, questioning and longing. People who come to me and ask me to bear witness to their pain. Some of those emails are also expressions of profound gratitude for "
helping me through the darkest time of my life" and "the comfort we received from you saved our family and our lives."
What do I do to help those suffering traumatic death? I have no magic wand, or pill, or words. I am, however, willing to join a person in the abyss and sit with the suffering non judgmentally, without urging him or her toward healing before healing's time has come. I radically accept whatever emotional state presents, even if it means we spend two hours on the floor in silence except for the visceral moaning or sobbing, the primal longing for a person's beloved dead.
It has become appallingly clear that
our technology has surpassed our humanity.
-Albert Einstein
We should not, ethically or morally, medicalize grief. To do so is to medicalize love. We rarely mourn for that which we do not love. I can only begin to imagine what the sages, and mystics, and shamans of the past might think of a society which does so. Seems hardly human at all.
And what about the untimely death of a spouse or parent? Or soldiers who have witnessed unspeakable losses in the threshold of violence and atrocity we cannot imagine? There are no exceptions in the DSM for that? Or what about the death of a baby or child? Of all losses, this one is, time and time again in the literature, clearly distinguishable from so many other losses.
I know from many years of experience that anachronistic, traumatic bereavement is unique. And there remain many misconceptions and overgeneralizations about the bereaved resulting in rather reductionist views:
They say that depressed individuals think of suicide but that the bereaved don't. Actually, the risk of suicide in bereaved parents is up to 30 times greater than the general population (
Qin & Mortenson, 2003). Qin and Mortenson note in their study (n=18,611 and n=372,220) that "
losing a child may contribute more than other factors to provoke parents to want to die" (p. 802).
DeFrain and colleagues (1985, 1988) found that between 70-80% of bereaved mothers experienced thoughts of suicide. Both anecdotally and empirically, I know this to be true.
But if the
Gaussian curve shows a normal distribution of thoughts, emotions, and behaviors for a certain population that is in stark contradiction with the hegemony of the majority, those outside the relevant population, then what becomes normalized? Reality of the people or the agenda of those with such hegemonic power? In addition, one important
study found that only one-half of those with suicidal ideation have a mental disorder (thus buttressing my aforementioned point). The same study also found that, after controlling for psychiatric morbidity, only disorders originating from poor impulse control and anxiety regulation predicted the act of suicide (Nock, Hwang, Sampson, et al, 2009).
Some also assert that the ability to receive consolation is one of the markers between depression and grief. I have some questions about this purported consoling: What is the quality of the consolation? Who is consoling and how? How do we ensure a bereaved person gets before a "
skilled clinician"? What about shame? Guilt? Anger? Trust? Platitudes? Insensitive others? Community? How do those play a role? Far too many variables to operationalize this process, in my opinion.
Just as despair can come only from one human being to another,
hope, too, can be given to one only by another.
-Elie Wiesel
The word compassion comes from the roots
com meaning "together" and
pati meaning "to suffer". Roshi
Joan Halifax says that "
compassion is a tenderness of heart in response to suffering". With compassion in my heart, let me introduce you to some families who have given their permission to share their stories for the purposes of this statement. They are a part of our very sad and grieving-without-bounds community which puts no time limits on an interminable grief, and in my commitment to caring for them, I continue to suffer with them and beside them. These are the people I see everyday, all day long for 16 years, and this is their insufferable reality:
Meet precious Zachary.
His mother, Shawn, nearly died during his traumatic birth. Tragically, Zachary did die during birth. His big brother was waiting patiently for his arrival. His father endured indescribable stress and trauma after Zach's death and almost losing his wife. Physical recovery has taken more than a year for Shawn. But, the physical recovery is the easy part. Life has changed forever for this family who miss their beloved Zach. Words cannot express their pain and their suffering at this profoundly excruciating loss of a baby who is unspeakably loved. His place in their family is, simply, irreplaceable.
Meet beautiful Ronan.
Ronan was a gorgeous and "spicy" little boy with a passion for Star Wars and fierce love for his family. He has two big brothers, twins, and parents who love and adore him. When he was just three years old, Ronan was diagnosed with neuroblastoma. His mother and father and brothers were catapulted into a world of suffering beyond any comprehension, enduring treatment after treatment, hospital after hospital, clinging to hope that he would survive. He was enrolled in a clinical trial at one of the "best" hospitals in the nation. When his treatment was not successful and death was imminent, "
we were put out into the streets like trash," his mother, Maya, said. Ronan would die soon after with his family by his side, and the excruciating pain, etched into his mother's sad, emerald eyes, is palpable. There are no words in the English language that can adequately describe the daily struggle of Ro's family. But his mother writes to him in a blog called
Rockstar Ronan, and their love is inspiring millions.
Meet darling J.
J. was kinship placed at birth with A., a relative who adopted him and who is full of endless love for him. Sadly, J. was born substance addicted. For three years A. loved and nurtured and adored J. He was so happy, always smiling, joyful, affectionate, and gentle. J. is A.'s only child. At the behest of his biological parents, he was sent back to live with them despite A.'s vociferous protestations. She begged the state not to further traumatize him by taking him from the only home and mother he had ever known. Her pleas went unheard and J. was returned to his parents. Two years later, J. was brutally beaten to death resulting in a highly publicized media frenzy. A. misses her little boy every single day and must deal with the grief and rage and injustice surrounding the circumstances of his death. J. is never far from her mind or her heart.
Meet sweet Mckenna "MBug".
Mckenna's smile lit up even the darkest room. Her giggle was contagious. She knew, unquestioningly, how much she was loved. She is Ashley's only child. And Mckenna was showered with adoration her entire nine months. Ashley was young and going through a difficult divorce. She was moving out of her apartment when she was trying to move the television on her own. The weight of the television was too much and it slipped through arms. She dropped it not realizing that Mckenna was there in the room with her. Tragically, the television fell onto Mckenna and she died after being transported to the hospital. Ashley struggles with regret and pain that not many can imagine. Mckenna was her entire world. You can see the love between them in photos and videos. The way they look into each other's eyes is magical. Now, every moment of Ashley's life is filled with longing for and missing MBug.
Meet the two perfect kids, Katie and Zack.
Katie and Zack Eide are part of a beautiful family of five: Sandie and Mark, their parents, and an older brother. Katie and Zack were driving on the freeway when a sudden dust storm, a haboob, hit the valley.
Katie and Zack were rear-ended by a large truck. They both died in the crash. Their parents are beyond heartbroken, desperately missing two of their three children. Katie was a vegetarian tree-hugger who loved cheesecake and hiked barefoot. Zack was a surfer and charmer whose nickname, Sunshine, fit him perfectly. Sandie dreams of her children often, and Mark has an ennobling way of being with his grief.
Nothing in their lives is the same except for the love they hold deep in their hearts for their "kids". Sandie and Mark suffer through each day in the absence of their two beautiful children.
Everyone is an 'expert' in grief until it is he who has it.
-William Shakespeare
Do you -
any of you - have the answers these families seek? Can you cure them? Surely, I cannot. And I will not participate in any ruse to do so. What manual tells you what to do to "console" Shawn, Maya, Katie, Amy, Ashley, Sandie and Mark? Are you, Dr. DSM, prepared to sit before one of these parents two weeks after their unspeakable horrors and tell them they are depressed? And do you actually
believe that?
It's relatively easy to entertain multiple possibilities of truth
and right action if one remains
a spectator on the sidelines.
-Helen Merrell Lynd
Or what about other parents with whom I've worked? One whose three children and husband died in a fire? Or one whose 17-year-old daughter was raped and murdered? Or the woman whose two young children were murdered by their father?
Shall I send them off to a psychiatrist to diagnose them with a disease?
There's only
one disease expressed in that equation and it isn't on the part of the bereaved. The entire system is a mirror image- a projection, of its own illness and intolerance, denial and
delusion. Truly, we live in an insane world when spouses and children and parents, like those above, and other grievers around the world can be diagnosed with Major Depressive Disorder- a mental illness- two weeks following a traumatic death at the behest of someone who has no notion of the reality of their experiences. This feels like the apogee of hubris, exorbitant arrogance. Too much knowledge and absolutely no wisdom. Too much death avoidance and not enough willingness to approach the ineffable. I see this played out often when I speak of my work and watch others recoil. But - of all the helping professionals- shouldn't a provider of mental health "care" be
highly trained and well-prepared to deal with trauma and death?
And, tell me
why is it that mourners cannot get help at
any time they need it?
If it is because insurance companies refuse to pay for grief counseling then our obligation is to oppose the establishment and
not acquiesce to a caustic and fallacious taxonomy which further harms the most vulnerable.
If we are going to
cure anything, let's remedy the systemic apathy in an institutional pedagogy unfit to cultivate mindful healers and the insurance providers whose myopic understanding of the human condition, tempered against economic avarice, limits their ability for circumspect.
And why
is our ability or willingness to help, as a society, based on
time? What makes us think that the two-week bereavement exclusion will allow someone to seek help and that
not having such an exclusion will preclude such help? Grief counseling or therapy with a competent provider
may help some. But also, what about the role of faith
communities?
Indigenous healers? Friends? Colleagues? Nonprofits and self-help groups? Neighbors? Even strangers? We are enabling an environment of human apathy - abdicating our responsibilities to one another and foisting it onto a system -a machinistic system- asking this system to care deeply when it cannot. Instead of abnegating our moral duty to fellow human beings, we should be fostering a society of individuals who care about and for one another. Person-to-person, as in
Buber's (1932) concept of
I and Thou, Ich and Du.
I am done with great things and great institutions and great success.
I am for those tiny, molecular moral forces that work
from individual to individual, creeping through
the crannies of the world, like so many rootlets,
or like the capillary oozing of water which, if given time,
will rend the hardest monuments of pride.
-William James
There are
many who can help those who are grieving whether the help is sought weeks, months, or even years following a death. I once saw a woman whose newborn died in 1967 and she had, in her own words, "
tried to bury the pain and the truth" with her baby. More than thirty years later, she wanted to be able to "
die in peace" and so she sought help in confronting the pain that she had deflected for so many years.
Healing communities offer opportunity for deep and meaningful human connection and solidarity. And, thus, for this woman the
MISS Foundation was there for her, and provided a place of comfort and solace.
We need not feign mental illness and disease for mourners to seek and receive the kind of help which
truly helps.
Never apologize for your feelings.
When you do so, you apologize for the truth.
-Benjamin Disraeli
I can have no part in this diagnostic
charade. Rather, I will go on, in the spirit of compassion, suffering with the other, in the best way that I can. Ethically, I cannot and will not violate what I know to be real and true and sane and human.
This implacable grief is a result of unyielding love. If we wish, as a society, to truly help those suffering in the aftermath of loss, then we must make the move toward collective compassionate and open hearts. Systems of "care", HMOs, hospitals, and evidence-based practice manuals will not help heal others.
You cannot rush your way through grief.
Grief unfolds with the same exquisite timing as the rose,
left to blossom on its own time,
until the colors slowly fade
and the petals fall away
of their own accord.
-Margaret Brownley
I posit a universal axiom based on reason, and truth, and the wisdom of the ages, not based on ethical relativism:
Only people and relationships and moments of deep connection will help heal the hearts of the bereaved.
So, to the DSM committee, should you have chosen to read this missive, what these families experience, hundreds of thousands every year, is
not ordinary grief, nor is it Major Depressive Disorder. This is
extraordinary grief as a result of
extraordinary circumstances. Contrary to your postulations about grief being like many other losses, in general, I can assure you that this is, actually, quite different from
other conditions of the human experience. Please, see clearly the truth that lies before you.
The mere title of 'doctor' is no criterion; a real doctor is one who is a true servant.
-Gandhi
As for me, I will continue to reassure the families with whom I work that their beloved child is worthy of each and every tear.
Hold the Kleenex. And the
relativity.
P.S.
Why is this a big deal?
For many reasons: 1) Imagine the person you love most in all the world. Picture his or her face, laugh, touch. Now, imagine that you will never see that person again because he, or she, has died. And then imagine that a two-week time limit has been imposed on your sadness, grief, anger, fear, confusion. If you experience such profound distress longer than two weeks, you may be diagnosed with a mental disease. Reason number one why this matters to you? Because someday, you will feel deep and profound grief that will bring you to your knees. You are not exempt. No one is. Grief, as Anne Morrow Lindbergh says, is "
the great leveler"; 2) Because, even if it's morally wrong, a person can be denied private health and life insurance if he or she has been diagnosed with a
mental disorder; 3) Because parents who have been diagnosed with a mental disorder can lose
custody of their children, and yes, it's happened; 4) Because, whether or not you agree with employer's rights to do so, individuals diagnosed with mental disorders can lose opportunities for jobs and often suffer the effects of global
discrimination; 5) Because a diagnosis of a mental disorder stays in your
records, despite the fact that many clinicians may not disclose this; 6) Because categorizing normal grief as a mental disorder is a lie and thus is unethical; 7) Because this lie further perpetuates the myths around 'normal' grief and obscures societal understanding, further marginalizing the traumatically bereaved; 8) because such lies harm people and relationships, and 9) many other risks, some known and some yet to be discovered.
________________________________________________________________
What you can do to help? Dr
David Elkins emailed me today with a call to action. To my colleagues in the mental health field, please, use your voices:
Dear Joanne,
I read your post earlier this morning on bereavement. Brent Robbins, who is on my committee, sent it to me. It is wonderful. So touching and so human... I'm so glad our paths have crossed.
Thanks for your article and for referencing our effort. Our petition website http://www.ipetitions.com/petition/dsm5/ has now collected more than 12,000 signatures, plus more than 40 "mental health" organizations have endorsed it, including the British Psychological Society, nearly 50K members, and 14 Divisions of the American Psychological Association. The DSM-5 Reform effort will be the cornerstone of the Division 32, Society for Humanistic Psychology, program at the annual APA conference in Orlando, Florida, this coming August. We have three program events focused on these concerns.
I don't know whether we will have any influence in bringing about substantive changes or not -- but we are doing our best. If you care to give out our petition website link and encourage professionals to read our "open letter" and sign the petition if they agree with it, we would be soooo appreciative. The hot link is: http://www.ipetitions.com/petition/dsm5/
Dave
P.S. Here's a brief you/tube video we did on what we consider to be the "social justice" dimension of the DSM-5 controversy.
http://www.youtube.com/watch?v=rwRwqhhWh3o
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 two editorials in
Lancet, a front page
New York Times story, and incredulous articles in more than 100 journals around the world. And now, during just the past few 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 providing services to grieving families whose children have died or are dying. The MISS Foundation has 77 chapters around the world and website that gets more than one 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 two 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 two 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 will cure normal heartache. As 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 (all within 4 days) is simply staggering and sends the clearest possible message to the American Psychiatric Association. Previously, DSM-5 has brushed off the thoughtful and spirited criticisms, mounted by experts in the field, disputing its interpretation of the 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 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 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.
___________________________________________________________
There is an
Occupy APA movement on May 5th, Saturday, in Philadelphia.
