Harimedia Forum

N.Y.Times

A Final Round of Therapy, Fulfilling the Needs of 2
By Henty Grunebaum, M.D. Published: Oct. 5, 2009





Some years ago I was consulted by a psychologist, a man in his 60s who wanted help with relationships and in thinking about his life, which was threatened by heart disease. At the time I was in my 70s, and his condition had special resonance for me: my father had died of congestive heart failure, and I have feared I will die in the same way.

“Do I want to work with a man who may die, and who may be closer to death than I am?” I reflected. If we have a good relationship, I will have to experience grief. If I do not come to care about him, the therapy will not be helpful. On the other hand, I might not outlive him, and losing a therapist is painful. Should he be subjected to that loss too?

But I liked the new patient and thought that in his situation, I would want someone to have the courage to be with me. So we began meeting from time to time. Over the next few years, he continued to see his clients, teach and write. We talked about how to improve his relationships, but mainly we talked about how to live when life seems likely to be short. I shared my own thoughts and experiences, and without identifying the patient, I discussed the situation with my wife (who is also a therapist, and a helpful editor), as I do when confronted by an ethical or otherwise challenging clinical problem.

As the patient’s heart failure worsened, I worried about him often and called if I had not heard from him for a few weeks. At the time, I was facing my own aging — cataract surgery and a knee replacement — and while I felt fine, I also felt keenly that time was passing too rapidly. I felt fortunate to be alive and well, enjoying my wife, my family, my friends and my work — but not a day went by that I did not think about my own death.

Then my patient took a sudden turn for the worse. I should not have been surprised: my father’s terminal hospitalization had seemed sudden, too, and to my lasting regret I had put off going to see him, not thinking it could be the last time. Determined not to make the same mistake this time, I called my patient and asked whether he might want me to come see him. He said he would. So I began a series of visits over a number of months to nursing homes and hospitals. He talked about his writing, his regrets about botching a prior marriage and his shame at being in a nursing home.

I was improvising a kind of therapy I had never done before with a dying patient. While he did talk about death, he focused on how difficult his life was now. Knowing his love of writing, I suggested that he borrow a laptop and put his thoughts and feelings into words. He smiled and seemed pleased at the idea.

Then a colleague who heard me talking about this intense emotional work lent me “Momma and the Meaning of Life: Tales of Psychotherapy” (Piatkus, 1999), by Irvin D. Yalom, a psychiatrist and author. In particular, Dr. Yalom writes about a patient of his who had metastatic breast cancer and who taught him what living with and dying of cancer was like. When we next met, my patient had begun needing oxygen and was besieged with paperwork. He needed to transfer to the Medicaid rolls to pay the costs of his nursing home, and he complained that someone so sick should not have to put up with such a burden. I agreed that it was Kafkaesque; even when you are dying, I thought, there is no respite from bureaucratic hassles.

After a bit I said: “You have always been a teacher and consultant, and you are going through something I will soon face. What can you teach me about it?” His face lighted up. “The first thing you need is a sense of humor,” he said, as I recall. “And then you need something like my writing, which gives your life some meaning. And finally you need to be able to put up with a lot. You have to deal with lots of people who cannot do simple things right, such as putting in an IV or bringing you edible food.”

I replied with a favorite Woody Allen line: “It’s not that I’m afraid to die. I just don’t want to be there when it happens.” And he fired back: “Woody Allen also said: ‘We know there is an afterlife. The question is what times is it open and is it close to Midtown?’ ”

He was soon transferred to another hospital, where I found him looking very weak. I stayed for a few minutes, held his hand and told him and his wife they could call me anytime, day or night. Three days later his wife called to say visits were now limited to his immediate family, adding, “I know you mean a lot to him.” I then learned that he had been withdrawn from medications and was being “kept comfortable,” which meant that the end was near. I became very sad, preoccupied with the thought that we had not had a chance to say goodbye. I also knew that I needed this farewell more than he did.

At his memorial service, where there were many heartfelt tributes, his wife approached me and said she had asked him, “Why does Henry see you, since you are not paying him?” His answer, as she recounted it, made clear that though on the verge of death, he had felt affirmed as a teacher, a person and a fellow professional — that dying need not be merely a matter of letting go, of disengaging from those most dear to us, but of giving meaning, hope and a vital part of oneself to those whose lives we have touched and have touched us. “He comes,” my patient had told his wife, “because he is learning from me.”
_____
- Henry Grunebaum is a psychiatrist and clinical professor at Harvard Medical School. Judith Grunebaum contributed to this essay.

N.Y.Times

After a Death, the Pain That Doesn’t Go Away
By Fran Schumer, Published: September 28, 2009


-


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, Neuro Image 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.”