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.
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.”
BUCKHANNON, W.Va., Jan. 8 - West Virginians
began burying their fallen miners on Sunday, mourning their losses but
celebrating the lives and legacies of men who prided themselves on making a
living by harvesting coal from deep within the earth.
In the mountain hamlets surrounding the Sago Mine, hundreds of mourners turned
out for the funerals of 6 of the 12 men who died there last week. But the grief,
sympathy and prayers extended well beyond the funerals, most of them private
services from which reporters were banned.
White ribbons and bows adorned utility poles in Buckhannon, and dozens of
roadside signs conveyed the somber mood. "Healing hurts," one sign said outside
a doughnut shop here. One just north of town read, "God just got 12 new angels."
At the service for Jesse L. Jones, a 44-year-old miner from Pickens, the Rev.
Donald Butcher, pastor of Sand Run Baptist Church, spoke the names of each of
the 12 men killed at the mine and spoke of their way of making a living and
making a life.
"You see, coal miners are a different breed of men; they don't have any fear,"
Mr. Butcher said to about 200 mourners at a funeral chapel just north of the
mine. Miners, he said, give us electricity for lights as well as powerful
lessons on working tirelessly, no matter the circumstances.
"God gives us people who are heroes, and we don't even realize it," he said. "We
got lots of coal miners here with us today. America is great because of this
profession and because of men like Jesse, who put their lives on the line."
The pastor spoke of one of Mr. Jones's grandfathers, who was killed in a mine
explosion, and of members of his own family, one of whom lost his sight and
others who lost their fingers mining.
The other miners buried Sunday were Alva Martin Bennett, 51; Jerry Groves, 56;
David Lewis, 28; Martin Toler, 51; and Jack Weaver, 52.
At Sago Baptist Church, where inaccurate first reports of the survival of 12
miners brought euphoria that later turned to grief, the Rev. Wease Day stood in
front of a huge picture of the Last Supper during regular Sunday morning
services and tried to make sense of it all.
Wearing a blue tie with the face of Jesus on it, Mr. Day told the congregation,
"The other night when we received what we all believed to be good news, we all
shouted and rejoiced, but you know when the other news came it broke our hearts
as well."
But, he said, God would never forsake his people and was with them throughout
the heartbreaking ordeal even if they could not understand or answer the
unanswerable questions.
"Many times people think, 'Well, it was God's fault,' " Mr. Day said, "but God
has a master plan, and everything comes together in that master plan. He was in
control every minute.
"We were in this building the other night and it came to mind that the spirit
was so great here and it was so great outside and God had just covered these old
hilltops with his holy spirit, his holy power."
After the service, the church bells rang 12 times, echoing through the
mountains. Just down the road near the entrance to the Sago Mine, 12 black
ribbons hung from a fence.
Even as the towns mourned their dead, people kept praying for the recovery of
the sole survivor of the mine disaster, Randal McCloy Jr., 26. Doctors at West
Virginia University Hospitals, where Mr. McCloy is being treated, said that he
remained in critical condition Sunday night but that his heart, lung and muscle
functions had improved.
Mr. McCloy was breathing on his own, and doctors had stopped sedating him.
At First United Methodist Church, the pastor, the Rev. Mark Flynn, told
congregants that he had been with the families of the miners almost nonstop for
three days.
"I went to Sago to minister to those families, and they ministered to me," Mr.
Flynn said. "I was touched by the strength, the love and the wisdom. In those
dark days and nights at the Sago Baptist Church, I saw some light. I saw light
in the faith and love of the family members with whom I talked.
"Their faith was not just a vague notion that somehow everything would turn out
as they wished. These people believe that they and their loved ones were in the
hands of God, no matter what happened in that mine."
