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Incurable ALS Doesn't Doom Sufferers to Despair

Most patients near end of life not in state of emotional collapse, studies find

FRIDAY, July 15, 2005 (HealthDay News) -- Patients in the final stages of Lou Gehrig's disease would have every right to become clinically depressed.

But two new studies suggest that most do not face their last days in a state of emotional collapse.

Of course, these non-depressed patients aren't happy to have the incurable disease, formally known as amyotrophic lateral sclerosis (ALS). "They would have liked to live more years without it," said study co-author Steven M. Albert, an associate professor at Columbia University. "But are they depressed, have they lost interest in things that have always appealed to them, do they feel blue and down, do they feel like they're moving slowly and can't think straight? No, [most] don't have those sorts of symptoms."

The studies, which appear in the July 12 issue of Neurology, are unusual because researchers haven't spent much time examining the emotions of people as they face impending death, Albert said. "With most diseases, you never know when someone's going to die."

In contrast, ALS follows a predictable course. The disease destroys the brain's ability to control muscles through neurons, causing a gradual physical decline. At the end, the patient is unable to breathe.

According to the ALS Association, 5,600 Americans are diagnosed with the disease each year, and about 30,000 are living with it at any one time.

The disease was first diagnosed in the 19th century, but became well-known after it took the life of baseball player Lou Gehrig. Noted physicist Stephen Hawking is among a minority of patients who have lived for a long time with the illness, although he is severely disabled.

In the new studies, researchers surveyed the same group of 80 people with advanced ALS disease. All had severe trouble breathing, indicating they would die or need ventilators within six months.

During the study period, which lasted until the patients died or went on ventilators, 57 percent of the patients never became clinically depressed. In other words, they didn't cease to be able to function emotionally.

Some patients did become clinically depressed, and 8 percent were always depressed. By contrast, an estimated 4 percent to 5 percent of the general population suffers from depression over a 12-month period.

Still, clinical depression was "still the rare phenomenon, when some people might have thought (it would affect) four out of five," Albert said. "The broader message is that even when people are dying, they can have satisfying lives and appreciate a lot of things."

Death was on the minds of many of the patients, however. Of the 53 who died during the study period, 23 reported thinking about ending their lives. Three asked caregivers for relief from pain even if it hastened their deaths.

"For those people who are able to exercise this control over dying and report very high levels of suffering, their mood improves when they realize they could work out an arrangement and control the time of death," Albert said.

Dr. Catherine Lomen-Hoerth, director of the University of California at San Francisco's ALS Center, said the findings reflect what she sees on the job. "Most patients are quite comfortable with death," said Lomen-Hoerth, who wrote a commentary accompanying the two new studies. "It comes with having a lot of time to prepare, and from clinics and hospice professionals addressing the issue with patients and families."

More information

Learn more about ALS from the ALS Association.

SOURCES: Steven M. Albert, Ph.D., M.Sc., associate professor, clinical sociomedical science, Columbia University, New York City; Catherine Lomen-Hoerth, M.D., Ph.D., director, ALS Center, University of California at San Francisco; July 12, 2005, Neurology
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