DSM-5 Controversy Rages On in the Bereavement Community

How a diagnosis can help the bereaved person who struggles to cope

Posted Mar 22, 2012

If you've ever experienced a significant loss, you are no stranger to grief. Losses due to divorce, unemployment, theft, assault, displacement due to fire or natural disaster, permanent injury, diagnosis of chronic or terminal illness, or the death of a loved one can rock your world and leave you stunned, disoriented, hurt, frightened, uncertain-- and bereft.

With uncomplicated grief, you may crawl into a cave at first, overcome with shock, sorrow, and despair. But as the shock subsides, you can muster your coping skills and still function when necessary. Over time, you adjust to a "new normal", shed the pain, reengage with your life and the people around you, and even find peace. In short, you can grow and even experience personal transformation due to reordered priorities and new opportunities.

But what happens if you crawl into the cave of grief, and lose sight of the light at its entrance? What if you find yourself giving up in despair, stuck in the cave and perhaps falling deeper and deeper into the abyss?

This kind of debilitating grief is considered "complicated", and the American Psychiatric Association is proposing changes to the way grief is categorized and diagnosed, particularly after the death of a loved one. Two basic modifications will appear in the upcoming 5th edition of the Diagnostic and Statistical Manual of Mental Disorders, or as it's commonly referred to, the DSM-5.

1.     A new diagnostic category will be added: Prolonged (Complicated) Grief Disorder. This diagnosis would apply to bereaved persons who experience significant impairment and distress that persists over an extended period of time. (e.g. some propose longer than 6 months, others 14 months) after the death of a loved one.

2.     The "bereavement exclusion" will be eliminated from the diagnosis of Major Depression, so that this diagnosis can be given to bereaved persons experiencing significant and pervasive symptoms of clincial depression after the death of a loved one, even during the first couple of months following the death.

These changes are being applauded by many, but there is a cadre of bereavement clinicians and advocates, backed by a following of bereaved persons, who are voicing fervent opposition.  They fear that mental health practitioners will revert to the olden days, when emotional displays were frowned upon and pathologized. They're concerned that grief will be routinely misdiagnosed and mistreated as "mental disorder" if sadness lasts longer than 2 weeks. They assert that it's normal to be depressed, especially during the early months after the death of a loved one, and this depression is not worthy of being labeled as a disorder. They posit that receiving such a diagnosis is also an unnecessary smudge on one's record. The most catastrophic thinkers are concerned that "being labeled with mental illness" will prevent grieving persons from keeping their jobs and retaining custody of their children.  Others are worried that such a diagnosis will be a green light to treat grief with medication, which they believe will only serve to dull the pain and interfere with the patient's coping and adjustment. In fact, many resent the very idea of grief being medicated with anti-depressants. Bereaved persons can be heard shouting, "Don't take my grief away!" Along these lines, several participants in last week's Talk of the Nation on NPR expressed this normal desire to experience the depth and breadth of their grief after the death of a loved one. It's a way to honor the memory of the deceased, and mark this loss as significant. It's only fitting to fall apart for a while.
As a longtime advocate for bereaved parents, I have built a career on exploring and normalizing the emotions of grief and the grieving process. I understand these objections. However, I embrace the proposed changes to the DSM-5. Here's why:

1)     Far from being harmful or disrespectful, a diagnosis of Prolonged (Complicated) Grief Disorder or Major Depression  can benefit the bereaved who suffer from these very real conditions. Whenever a diagnosis is created, it gives a name to that particular kind of suffering. A diagnosis offers acknowledgement and validation to the sufferer. Receiving a diagnosis is often the first step in understanding and coping with what ails us. A diagnosis also leads to research and the development of evidence-based treatments. A diagnosis leads to appropriate treatment and insurance companies covering the cost. And a diagnosis leads to increased awareness and social support. In other words, depression and complicated grief aren't just normal grief that time will heal. And those who suffer deserve the respect of being recognized and treated for their particular wounds.

2)     These diagnostic revisions are not being cooked up in some Ivory Tower, by a clutch of theorizing intellectuals who are uncomfortable with emotional displays of grief. Nor are these revisions up for popular vote by the lay public. Rather, they reflect and accommodate new research findings and modern medicine's increased understanding of the effects of emotional trauma on the brain and the relationships between normal grief, prolonged or complicated grief, major depression, and PTSD.

3)     The proposed revisions neither direct nor imply that normal grief shall be pathologized from here on out. Clear distinctions remain between normal grief and complicated grief or major depression.  Normal grief is a bewildering mixture and wide range of painful feelings that rise and fall in waves, like a rollercoaster. Over time, the ups become more frequent and long-lasting, and the downs (or pangs of grief) become less pronounced and fewer and farther between. In contrast, complicated grief is characterized by debilitating or prolonged denial, avoidance, anxiety, intrusive thoughts, suicidal ideation, and isolation. Major depression is characterized by a pervasive, dull sadness, numbness, bitterness, and/or excessive anger. Unlike the ups and downs of normal grief, complicated grief and depression confer a feeling of being stuck, as if trapped in a hollow of the rollercoaster or even in a continued downward spiral. With normal grief, you fall apart but there is respite-periods of time when you can engage with life, get stuff done, or even smile at a joke or appreciate beauty. With complicated grief, you fall apart and remain broken. There is little to no respite.  Because of the clear distinctions between normal grief and complicated grief or major depression, rest assured, just because you are grieving the death of a loved one, you won't be automatically diagnosed as suffering from a "mental disorder". (Continued on page 2.)

4)     In the current DSM-4, a person can be diagnosed with depression within 2 months after any other significant loss or stressful life event besides the death of a loved one. But new research has found that any of these traumas, including death, can exacerbate or increase the risk of depression. In addition, if someone is assaulted or displaced by a house fire, and 5 weeks later is still emotionally debilitated, we would applaud his or her efforts to seek help. Why not offer the same permission, support, and assistance to the widower or grieving parent? Indeed,  if you are bereft and become clinically depressed in short order, such that you can't function or reengage with life even when necessary, you should be able to get the help and support you need to get back on track.

5)     To those who are squawking about not wanting to be labeled as "mentally ill", I encourage you to adopt a more enlightened view of what is meant by "mental illness." Just as we no longer consider physical illness a sign of "the devil's work", modern medicine doesn't consider mental illness an invasion of evil, a moral failing, or a character flaw. As we learn more and more about the brain, we're recognizing that it's an organ that sometimes faces physiological challenges, just as do other organs in the human body. Even the treatment of addiction is shifting to a medical model. So, just as you are unwilling to consider the person with emphysema, diabetes, or heart disease to be corrupt, don't consider the person with depression or prolonged grief corrupt. Any identifiable imbalance in the brain can-- and should-- be treated appropriately with compassion, therapy, and/or medication. In fact, I encourage everyone to openly share their struggles, and the therapies and medications that help, in order to erase the stigma.

6)     I believe we can continue to rely on the professionalism and compassion of mental health practitioners. The fear that upon publication of the DSM-5, practitioners will start misdiagnosing prolonged/complicated grief, treating normal grief as clinical depression, or pushing medication is based on patently erroneous assumptions of looming incompetence. I assume quite the opposite:

a.     With the DSM-5 in hand, practitioners won't throw away years of clinical training and judgment, and start confusing normal grief with major depression or prolonged grief.

b.    The DSM is not a set of laws that lumps all people together, but a set of guidelines that are to be applied  judiciously to each person as a unique individual. In other words, the DSM-5 will suggest-- not require--  any diagnosis.

c.     Likewise, effective practitioners will continue to tailor therapies and medications to the individual. And they will continue to offer unbiased information and guidance, and support their patients' treatment choices.

d.     Even without these diagnositic revisions, clinicians will continue to offer compassion and state-of-the-art treatment to those who struggle to cope and feel whole again.

7)     Even if you are diagnosed with major depression, no one can force you to take medication, much less fill a prescription.  (Anti-depressants have been shown to be ineffective for prolonged/ complicated grief.) However, bereaved persons who've taken medication for depression report that it can help-- without taking away their grief. Medication doesn't lessen the pain, but it does provide a floor to the abyss. So instead of feeling stuck or continuing on a downward spiral, medication can offer you the comfort of a good foothold , renewing your ability  to climb up and out.

Case in point: The final caller on last week's Talk of the Nation was a bereaved mother whose baby died a year ago when she was 8 months pregnant. Like many parents, she wanted to feel the depth of her grief, be mindful and present with her mourning, and acknowledge her beloved baby. But after a while, life became a struggle, "really, really hard." And finally a month ago, she started taking an anti-depressant, as she realized that she just couldn't function, her support system was burning out, and her counselor really thought it could help. She agreed to a six-month trial, and in hindsight, she now wonders if maybe she'd had some undiagnosed depression even before her baby died. She adds, "I don't know. It certainly runs in my family."  In any case, the DSM-5 revision will reflect this mother's experience of bereavement triggering depression, and her path shows the benefits of diagnosis and treatment. She says now, "I think I'm on a better course these days."