Despite their many challenges, patients with advanced amyotrophic lateral sclerosis (ALS) are not likely to experience major depression, according to two prospective studies in the July 12th issue of Neurology. The frequent wish to die expressed by some dying patients seems to reflect an existential “end-of-life despair,” rather than depression per se, the investigators report.

“It’s hard to study mood and decision-making as people approach the end of life,” said study co-author Dr. Steven M. Albert. “ALS is an excellent model for the psychosocial study of dying, because we can accurately predict the last 6 months of life based on pulmonary function. And because they know that they have a terminal condition, patients have a long time to think about and prepare for it.”

In the first study, led by Dr. Judith G. Rabkin at Columbia University in New York, the investigators conducted extensive semistructured monthly interviews with 80 patients with ALS with an anticipated life expectancy of 6 months or less.

Based on responses to the Patient Health Questionnaire, 9% had symptoms consistent with major depression at baseline, and 10% had minor depression. Responses to the Beck Depression Inventory showed that 24% had moderate or severe symptoms of depression. Fifty-seven percent never had a depression diagnosis during a total of 369 assessments. The authors observed no trend toward increasing depression over time.

“The prevalence of persistent depression that you might want to treat with an antidepressant was very low,” Dr. Albert pointed out. “When you ask if they have lost interest in things that used to be important to them, and if they feel blue and down, most do not feel that way; they still have plenty to live for.”

The investigators also examined factors that might affect risk of depression - spiritual beliefs, spouse as caregiver, financial status, caregiver mood, and hospice participation - and found that none could distinguish patients who experienced depression and those who did not.

“People do live while they’re dying,” Dr. Albert said. “I am continually impressed with how many travel, how many decide to renew magazine subscriptions, or even help run businesses.”

In the second study, Dr. Albert and his associates documented the wish to die expressed by the 53 patients in the same cohort who died during the study. Twenty-three (43.4%) reported that they had thought about ending their life, and 10 (18.9%) expressed that wish to others. Three patients (5.7%) actually hastened their death.

Even in the absence of clinical depression, Dr. Albert said, “there is a subset of people who find the level of disability completely intolerable. It’s a kind of existential suffering, where they feel they’re losing control over their bodies and their lives and they want control over the dying process.”

He added that families of patients who hastened death reported that deaths were “good,” in the sense that they didn’t report bitterness or anxiety about what happened, and that patients seemed at ease.

“And once patients were aware that they had some control over their death, their mood improved,” he said. “One take home lesson from this is that clinicians should be concerned with fostering control and autonomy as part of our interest in the dignity of the dying person.”

Neurology 2005;65:62-74.