After a Death, the Pain That Doesn’t Go Away New York Times September 29, 2009

After a Death, the Pain That Doesn’t Go Away

Each of the 2.5 million annual deaths in the United States directly affects four other people, on average. For most of these people, the suffering is finite — painful and lasting, of course, but not so disabling that 2 or 20 years later the person can barely get out of bed in the morning.

Yana Paskova for The New York Times
MENTAL HEALTH Dr. M. Katherine Shear, a professor of psychiatry at Columbia University, said the suffering from extreme grief “takes a person away from humanity.”

For some people, however — an estimated 15 percent of the bereaved population, or more than a million people a year — grieving becomes what Dr. M. Katherine Shear, a professor of psychiatry at Columbia, calls “a loop of suffering.” And these people, Dr. Shear added, can barely function. “It takes a person away from humanity,” she said of their suffering, “and has no redemptive value.”

This extreme form of grieving, called complicated grief or prolonged grief disorder, has attracted so much attention in recent years that it is one of only a handful of disorders under consideration for being added to the DSM-V, the American Psychiatric Association’s handbook for diagnosing mental disorders, due out in 2012.

Some experts argue that complicated grief should not be considered a separate condition, merely an aspect of existing disorders, like depression or post-traumatic stress. But others say the evidence is convincing.

“Of all the disorders I’ve heard proposed, they have better data for this than almost any of the other possible topics,” said Dr. Michael B. First, a professor of clinical psychiatry at Columbia and an editor of the current manual, DSM-IV. “It would be crazy of them not to take it seriously.”

There is no formal definition of complicated grief, but researchers describe it as an acute form persisting more than six months, at least six months after a death. Its chief symptom is a yearning for the loved one so intense that it strips a person of other desires. Life has no meaning; joy is out of bounds. Other symptoms include intrusive thoughts about death; uncontrollable bouts of sadness, guilt and other negative emotions; and a preoccupation with, or avoidance of, anything associated with the loss. Complicated grief has been linked to higher incidences of drinking, cancer and suicide attempts.

“Simply put,” Dr. Shear said, “complicated grief can wreck a person’s life.”

In 2004, Stephanie Muldberg of Short Hills, N.J., lost her son Eric, 13, to Ewing’s sarcoma, a bone cancer. Four years after Eric’s death, Ms. Muldberg, now 48, walked around like a zombie. “I felt guilty all the time, guilty about living,” she said. “I couldn’t walk into the deli because Eric couldn’t go there any longer. I couldn’t play golf because Eric couldn’t play golf. My life was a mess.

“And I couldn’t talk to my friends about it, because after a while they didn’t want to hear about it. ‘Stephanie, you need to get your life back,’ they’d say. But how could I? On birthdays, I’d shut the door and take the phone off the hook. Eric couldn’t have any more birthdays; why should I?”

Hours of therapy and support groups later, Ms. Muldberg was referred to a clinical trial at Columbia. After 16 weeks of a treatment developed by Dr. Shear, she was able to resume a more normal life. She learned to play bridge, went on a family vacation and read a book about something other than dying.

A crucial phase of the treatment, borrowed from the cognitive behavioral therapy used to treat victims of post-traumatic stress disorder, requires the patient to recall the death in detail while the therapist records the session. The patient must replay the tape at home, daily. The goal is to show that grief, like the tape, can be picked up or put away.

“I’d never been able to do that before, to put it away,” Ms. Muldberg said. “I was afraid I’d lose the memories, lose Eric.”

For some, the recounting is the hardest part of recovering. “That was just brutal and I had to relive it,” said Virginia Eskridge, 66, who began treatment 20 years after the death of her husband, Fred Adelman, a college professor in Pittsburgh. “I nearly dropped out, but I knew this was my last hope of getting any kind of functional life back.”

At the same time patients learn to handle their grief, they are encouraged to set new goals. For Ms. Eskridge, a retired law school librarian, that meant returning to the campus where her husband had taught.

“Everywhere I went there were reminders of him, because we had been everywhere,” she said. “It was like I was getting stabbed in the heart every time I went somewhere.”

That feeling finally went away, and Ms. Eskridge was even able to visit her husband’s old office. “It really gave me my life back,” she said of the treatment. “It sounds extreme, but it’s true.”

In a 2005 study in The Journal of the American Medical Association, Dr. Shear presented evidence that the treatment was twice as effective as the traditional interpersonal therapy used to treat depression or bereavement, and that it worked faster. The study supported earlier suggestions that complicated grief might actually be different not only from normal grief but also from other disorders like post-traumatic stress and major depression.

Then, in 2008, NeuroImage published a study of the brain activity of people with complicated grief. Using functional magnetic resonance imaging, Mary-Frances O’Connor, an assistant professor of psychiatry at the University of California, Los Angeles, showed that when patients with complicated grief looked at pictures of their loved ones, the nucleus accumbens — the part of the brain associated with rewards or longing — lighted up. It showed significantly less activity in people who experienced more normal patterns of grieving.

“It’s as if the brain were saying, ‘Yes I’m anticipating seeing this person’ and yet ‘I am not getting to see this person,’ ” Dr. O’Connor said. “The mismatch is very painful.”

The nucleus accumbens is associated with other kinds of longing — for alcohol and drugs — and is more dense in the neurotransmitter dopamine than in serotonin. That raises two interesting questions: Could memories of a loved one have addictive qualities in some people? And might there be a more effective treatment for this kind of suffering than the usual antidepressants, whose target is serotonin?

Experts who question whether complicated grief is a distinct disorder argue that more research is needed. “You can safely say that complicated grief is a disorder, a collection of symptoms that causes distress, which is the beginning of the definition of a disease,” said Dr. Paula J. Clayton, medical director of the American Foundation for Suicide Prevention. “However, other validators are needed: family history and studies that follow the course of a disorder. For example, once it’s cured, does it go away or show up years later as something else, like depression?”

George A. Bonanno, a professor of clinical psychology at Columbia known for his work on resilience (the reaction of the 85 percent of the population that does adapt to loss), was skeptical at first. But, Dr. Bonanno said, “I ran those tests and, lo and behold, extra grief symptoms were very important in predicting what was going on with these people, over and above depression and P.T.S.D.”

Regardless of how complicated grief is classified, the discussion highlights a larger issue: the need for a more nuanced look at bereavement. The DSM-IV devotes only one paragraph to the topic.

Studies suggest that therapy for bereavement in general is not very effective. But Dr. Bonanno called the published data “embarrassingly bad” and noted they tended to lump in results from “a lot of people who don’t need treatment” but sought it at the insistence of “loved ones or misguided professionals.”

Even if clinicians did identify people with complicated grief, there would not be enough therapists to treat them. Despite Dr. Shear’s “terrific research” on the therapy she pioneered, said Dr. Sidney Zisook, a professor of psychiatry at the University of California, San Diego, “there aren’t a lot of people out there who are trained to do it, and there aren’t a lot of patients with complicated grief who are benefiting from this treatment breakthrough.”

The issue is pressing given the links between complicated grief and a higher incidence of suicide, social problems and serious illness. “Do the symptoms of prolonged grief predict suicidality, a higher level of substance abuse, cigarette and alcohol consumption?” said Holly G. Prigerson, associate professor of psychiatry at Harvard Medical School and director of the Center for Psycho-oncology and Palliative Care Research at the Dana-Farber Cancer Institute in Boston. “Yes, yes and yes, over and above depression; they’re better predictors of those things.”

In an age when activities like compulsive shopping are viewed as disorders, the subject of grief is especially sensitive. Deeply bereaved people are often reluctant to talk about their sorrow, and when they do, they are insulted by the use of terms like disorder or addiction. Grief, after all, is noble — emblematic of the deep love between parents and children, spouses and even friends. Our sorrows, the poets tell us, make us human; would proper therapy have denied us Tennyson’s “In Memoriam”?

Diagnosing a deeper form of grief, however, is not about taking away anyone’s sorrow. “We don’t get rid of suffering in our treatment,” Dr. Shear said. “We just help people come to terms with it more quickly.”

“Personally, if it were me,” she added, “I would want that help.”

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