Bereavement – how one responds and adjusts to the death of a loved one – is a very individual matter. It is natural to experience a host of negative reactions in the weeks and months after the loss of a loved one: sadness, difficulty sleeping, painful reminders of the person, difficulty enjoying activities once shared, even anger.
Grief is a normal human reaction, not a disease, and there is no one right way to get through it. Most often, within six months of a death, survivors adjust and are more or less able to resume usual activities, experience joy and remember their loved ones without intense pain.
But sometimes, even when the loss is neither sudden nor unexpected, as is true in the majority of deaths in the United States, survivors close to the deceased can experience extremely disruptive grief reactions that persist far longer.
In a report last month in the New England Journal of Medicine, Dr. M. Katherine Shear presents a composite portrait of what is known as complicated grief, an extreme, unrelenting reaction to loss that persists for more than six months and can result in a serious risk to health.
Shear describes a 68-year-old widow who continued to be seriously impaired by grief four years after her husband died. The woman slept on the couch because she could not bear to sleep in the bed she had shared with him. She found it too painful to engage in activities they used to do together. She no longer ate regular meals because preparing them was a too-distressing reminder of her loss. And she remained alternately angry with the medical staff that cared for him and with herself for not recognizing his illness earlier.
Symptoms of complicated grief commonly include intense yearning, longing or emotional pain; frequent preoccupying, intrusive thoughts and memories of the person lost; a feeling of disbelief or inability to accept the loss; and difficulty imagining a meaningful life without that person.
“People with complicated grief often feel shocked, stunned or emotionally numb, and they may become estranged from others because of the belief that happiness is inextricably tied to the person who died,” wrote Shear, of the Columbia University School of Social Work and College of Physicians and Surgeons.
“Complicated grief is like a wound that doesn’t heal and can follow the loss of any close relationship,” she said. The risk of complicated grief is greatest – 10 percent to 20 percent – among those who lose a romantic partner and even higher among those who lose a child. It is more common after a sudden or violent death and most common among women older than 60, she reported.
Among the factors that increase the risk is the failure of the deceased to have done advanced care planning, which can result in close family members having to make painful decisions about end-of-life care with no guidance from the dying person.
Should treatment for the underlying disease be continued until death? Should the person be attached to a ventilator or feeding tube when there is no hope for recovery? Should CPR be attempted if the heart stops? Such choices are best made when the person is mentally competent and able to discuss choices with next of kin and one’s physicians.
“The more awful the circumstances surrounding the death, the greater the risk of complicated grief,” Shear said in an interview. Thus, survivors of those who died in the horrific car-train crash in Valhalla, N.Y., on Feb. 3, like the parents of children who died in the Sandy Hook Elementary School shooting in December 2012, are more likely to have complicated grief than, say, I was after the expected death of my husband from cancer five years ago. He had made it clear that no extraordinary measures be taken to extend his life.
Holly G. Prigerson and Paul K. Maciejewski of Weill Cornell Medical College in New York have developed a Grief Intensity Scale – it can be found at endoflife.weill.cornell.edu – that can help individuals determine if their reactions to a loss are severe and prolonged enough to warrant treatment from a mental health professional.
Some 30,000 survivors have completed this scale, “but very few people – 7 percent to 10 percent – screened positive” for complicated grief, Prigerson said in an interview. At greatest risk, she said, are people who have lost “the love of their life” or who were strongly attached to or dependent upon the person who died, as was the author Joan Didion, who recounted her intense, almost paralyzing grief after her husband died in “The Year of Magical Thinking.”
Complicated grief is more than a life-disrupting emotional response. It has been shown to result in neuropsychological abnormalities, including changes in brain activity that can impair memory and the ability to regulate emotions. Untreated, it can result in prolonged sleep disturbance, substance abuse, suicidal thoughts and behaviors, immunologic abnormalities, and an increased risk of heart disease and cancer.
People with intense grief reactions are commonly prescribed antidepressants. Although sometimes helpful, drugs are not the most effective treatment, Shear said. Rather, an approach called complicated grief treatment, which relies heavily on strategies used in cognitive behavioral therapy, is most likely to achieve results in the shortest amount of time, she said.
In 16 weekly sessions, it helps those with prolonged grief find ways to think about the death without experiencing “intense feelings of anger, guilt or anxiety” and function more effectively “by generating enthusiasm and creating plans for the future,” she wrote.
Unlike interpersonal psychotherapy, complicated grief treatment is highly structured. Each week, patients monitor their grief reactions and are assigned specific homework activities to help them adapt to and accept the reality of their loss.
In effect, people “reinvent their lives by revising goals and making plans” that do not include their lost loved ones, Shear said.