July/August 2012 Issue

Complicated Grief — Does It Belong in DSM-5?
By Lindsey Getz
Social Work Today
Vol. 12 No. 4 P. 8

Prolonged grieving exists, but some argue that classifying it as a separate disorder in DSM-5 is unwarranted and may inadvertently encourage unnecessary treatment with medication. Others contend it may get people the additional help they need to heal.

After losing her husband of nearly 40 years, Rosalie can’t find the motivation to get out of bed in the morning. She’s lost interest in her daily activities, and she has cut off communication with many of her friends. She claims her thoughts are in no way suicidal, yet she’s clearly expressed that she doesn’t feel she has much to live for either.

It’s been eight months since Rosalie’s husband passed. Is it still “normal” for her to have these feelings? That’s part of the debate that is rising as the American Psychiatric Association works on revamping its Diagnostic and Statistical Manual of Mental Disorders (DSM) for a fifth edition due in 2013. There is a push by some to include “complicated” or “prolonged” grief as a disorder, but it’s being met with some objection.

Clinicians work with many patients like Rosalie who are struggling to overcome the grief associated with a loss. Grief is one of the most common human emotions, as it’s rare to find someone who has never experienced the loss of a close family member or friend.

While it’s something we all must go through, many patients still describe grief as incredibly isolating. That feeling is a common reaction to a loss. Other common symptoms include sadness, numbness, guilt, and even anger. But when those feelings continue for long periods of time without easing in any way, grief can become debilitating. This has come to be known as complicated grief, a condition characterized by the patient’s inability to move on with his or her life.

The ‘Medicalization’ of Grief?
Many symptoms of complicated grief overlap with what has been called—for lack of a better term—“uncomplicated grief.” That automatically opens the door for some disagreement over diagnosing. Most of the controversy involves time frame: At what point does uncomplicated grief cross into the realm of complicated grief? While most clinicians certainly believe complicated grief exists, there is contention over the idea of including it in DSM-5.

“The idea that including complicated grief in DSM-5 will ‘medicalize’ grief is one of the biggest criticisms,” says Mila Ruiz Tecala, LICSW, founder of the Center for Loss and Grief in Washington, DC, and coauthor of Grief and Loss: Identifying and Proving Damages in Wrongful Death Cases. “Medicalizing this condition means patients will be more likely to receive medication to treat it, and medicine is not the first answer to this problem. Medication may be appropriate at certain times to control symptoms interfering with functioning so to allow the bereaved to process their grief. The real treatment is in talk therapy. It’s very important for the patient to work through their feelings. Patients need to process the loss, come to terms with the loss, and find meaning and purpose in life again. Many are concerned that if DSM-5 were to include complicated grief that medicine would be the first treatment and talk therapy would be pushed aside.”

“You can’t fix grief with a pill,” says Deborah E. Bowen, undergraduate program coordinator and interim associate director of the School of Social Work at the University of North Carolina, Wilmington who authored A Good Friend for Bad Times: Helping Others Through Grief. “That’s a short-term fix. I don’t see grief as a medical condition. Would most women be comfortable if PMS was listed under mental illnesses? It’s the same notion.”

But M. Katherine Shear, MD, a professor of psychiatry at Columbia University School of Social Work who has been studying complicated grief and has developed a form of therapy for its treatment, says clinicians should not ignore the fact that antidepressants may be helpful in some cases. Shear developed a psychotherapy for complicated grief and confirmed its efficacy with a National Institute of Mental Health (NIMH)-funded grant. In her treatment study, one-half of the participants were already taking antidepressants and still had complicated grief. Interestingly, these same people did better once the psychotherapy was added than those not taking antidepressants. So Shear and her colleagues believe medication may be a helpful addition to psychotherapy for some people and are now testing this hypothesis in another large four-site NIMH-funded study.

A Loop of Suffering
Other opponents of complicated grief being listed in DSM-5 argue that it should not be classified as a separate entity, that complicated grief is actually a subset of another disorder such as adjustment disorder, depression, or posttraumatic stress. But Shear says there is plenty of evidence that complicated grief should be defined as a separate condition. She calls complicated grief a “loop of suffering” where individuals are essentially “stuck” in their grief and can’t find a way out. People have a natural healing process after a loss, but sometimes this process is blocked or derailed. The resulting condition includes acute grief symptoms, such as yearning and longing, and other intense emotions and complicating problems, such as rumination or avoidance or ineffective emotion regulation.

“With complicated grief, there is something that impedes the healing process,” Shear says. “Think of loss like a physical injury. If we have a bad physical injury, our bodies begin a natural healing reaction. But if something interferes, we call that a wound complication. A complicating process is standing in the way of natural healing.”

Shear says her group has identified thoughts, feelings, and behaviors commonly seen in complicated grief. “‘If only’ scenarios, such as ‘If only we’d diagnosed the tumor earlier,’ ‘If only I’d told my husband to stay home that day,’ or ‘If only we hadn’t chosen that treatment,’ are a few of the countless thoughts a patient with complicated grief may express,” Shear explains. “This is counterfactual thinking, and it keeps the person from grappling with the fact that the deceased person is no longer here. But grief can also be complicated by excessive avoidance or by persistent inability to regulate the intense emotions that naturally occur during acute grief.”

With her treatment process, Shear aims to find and resolve the complications to help facilitate the natural healing process. The treatment includes components from several different treatment approaches, including an exercise that Shear calls “revisiting.”

“It’s similar to what we might do for posttraumatic stress disorder [PTSD] except that when we do it for PTSD, we’re trying to habituate the fear,” Shear explains. “People that are grieving are not afraid, just incredibly sad.”

Dealing with sadness is different from dealing with fear. “Trauma is something that’s very difficult, but you can find a way to put it behind you. Loss is forever, and you have to learn to live with loss,” Shear says.

Duration of Symptoms
Tecala, who regularly sees patients with complicated grief, agrees with the severity of the problem. In fact, she says the conflict that comes with the inability to “move on” after a death may actually lead to death. “Some people do die from broken hearts,” she says. “That would never be ruled a cause of death and nobody likes to talk about it, but the truth is that the incidence of death is high if you are 55 or older and have lost your spouse.”

But it’s the duration of symptoms being defined in the DSM that Tecala finds unrealistic. In DSM-III it was considered normal to grieve for up to one year. In DSM-IV, it was shortened to two months. “I’ve never seen anyone who does well after two months,” Tecala says.

For DSM-5, the proposal aims at a diagnosis of complicated grief as soon as six months after a loss, but many argue that this is still shortsighted.

Bowen works with a model of 13 months. “Even though [Elisabeth] Kübler-Ross describes a 12-month process, I find that most patients tend to move on around the time of that 13th month,” she says. “It’s as though they’re holding on with all of their strength for that first year, but once they get past that first anniversary date of the death, there is a shift. They begin to experience what [Granger E.] Westberg describes as ‘reentry.’”

Shear says the controversy surrounding this time frame is understandable since grief progresses differently based on the circumstances of the loss. However, she believes there is a misconception that proponents of a DSM classification, such as herself, are suggesting there is a time frame to complete grief. She says grief is never completed.

“What we are saying is that, over time, there should be some progress in grief,” Shear says. “It’s true that grief is forever in the sense that the person who has died is never coming back, and the patient has experienced a significant and permanent loss in their life—and in that way there is no time frame to grieving. But we have to learn to live with the loss. What needs to start to happen is that the person needs to show some sign that they’re making peace with the loss.”

That’s not something that happens quickly, Shear says, noting that it’s a process. “When a bereaved person has made no progress and feels the same way they did that first week of the loss, they may need help,” Shear explains. “The only evidence we have suggests that complicated grief can occur as early as six months. Yes, many people are very much still grappling with the loss at that point. We’re not saying we expect people to be over their grief. But those that are stuck and not moving forward at all may be experiencing complicated grief.”

Time to Heal
Clinicians who don’t believe that complicated grief has a place in the DSM argue that being stuck in the grieving process is still not reason for inclusion. “Yes, people do emotionally freeze and aren’t able to move on, but that doesn’t mean they have a mental illness,” Bowen says. “It just means they need a professional to help them talk through the emotions. They need more time to work through it.”

Bowen says part of the problem is that Americans as a whole simply aren’t comfortable with death. Many try to ignore the fact that it happens. Therefore, when an individual experiences a loss, he or she is often rushed through the grieving process.

“For example, in most corporations, you’re expected to be over the loss and back to work in a very short amount of time,” Bowen says. “Our legal and financial system also make grieving much harder on the individual. In the midst of a death, you have to immediately deal with the Social Security Administration and the Register of Deeds and all sorts of other responsibilities. When you have all of these matters to take care of, you end up putting your emotions in a box and tucking them away instead of dealing with that grief right away. But grief will wait. It doesn’t just go away because you are too busy to attend to it.”

Other cultures, Bowen says, handle grieving much more effectively. They understand the power behind memorializing their loved ones and the fact that grieving is a process. Many Americans typically devote only two or three days to focus on their grieving—maybe a viewing one day and a funeral the next.

“Other cultures and traditions don’t rush things,” Bowen explains. “In the Jewish tradition, there is no headstone placed on the grave until a year later when it’s unveiled in a special ceremony. And at all major holidays, there’s a special candle lit in memorial of the person who has passed. In the Lakota tradition, a year after someone has died, they have a Wiping of the Tears ceremony in which the deceased person is honored. But in the U.S., we don’t do a good job of memorializing. I suggest to clients that a way of grieving without pills is to work on creating a ritual. I’ve had people plant trees or donate money to a playground. It’s a new step in the process, and it often helps.”

Still, those pushing for the DSM inclusion continue to come back to the idea that it may allow the patient to get more of the help they need to move on.

“I think it’s analogous to a toxic organism,” Shear says. “If you have the Streptococcus infection and other complications arise, you end up getting very sick. But we’d never think of saying to the person who was exposed to a toxic microorganism that it’s a normal thing for them to get sick and not to do anything about it. So why shouldn’t we try to do all we can for those that are suffering from complicated grief? If someone has good supports and wants to manage it on his or her own and they are able to work through it, that’s great. But if they get stuck and could use additional help, I think it’s important that we’re doing what we can to provide that help.”

— Lindsey Getz is a Royersford, PA-based freelance writer and a frequent contributor to Social Work Today.