Rabkin J, Goetz R, Murphy JM, Factor-Litvak P, Mitsumoto H; ALS COSMOS Study
Group. Cognitive impairment, behavioral impairment, depression, and wish to die
in an ALS cohort. Neurology. 2016 Aug 5. pii: 10.1212/WNL.0000000000003035. [Epub
ahead of print]
To evaluate relationships among cognitive, behavioral, and psychiatric/psychosocial measures assessed in a multicenter cohort of patients with amyotrophic lateral sclerosis (ALS).
Recently diagnosed patients with definite or probable ALS diagnosis were administered 7 standardized psychiatric/psychosocial measures, including the Patient Health Questionnaire for diagnosis of depression and elicitation of wish to die. The Cognitive Behavioral Screen was used to classify both cognitive and behavioral impairment (emotional-interpersonal function). An ALS version of the Frontal Behavioral Inventory and Mini-Mental State Examination were also administered.
Of 247 patients included, 79 patients (32%) had neither cognitive nor behavioral impairment, 100 (40%) had cognitive impairment, 23 (9%) had behavioral impairment, and 45 (18%) had comorbid cognitive and behavioral decline. Cognitive impairment, when present, was in the mild range for 90% and severe for 10%. Thirty-one patients (12%) had a major or minor depressive disorder (DSM-IV criteria). Cognitive impairment was unrelated to all psychiatric/psychosocial measures. In contrast, patients with behavioral impairment reported more depressive symptoms, greater hopelessness, negative mood, and more negative feedback from spouse or caregiver. A wish to die was unrelated to either cognitive or behavioral impairment.
While we found no association between cognitive impairment and depression or any measure of distress, behavioral impairment was strongly associated with depressive symptoms and diagnoses although seldom addressed by clinicians. Thoughts about ending life were unrelated to either cognitive or behavioral changes, a finding useful to consider in the context of policy debate about physician-assisted death.
In August, a 41-year-old artist with amyotrophic lateral sclerosis (ALS) generated headlines in the mainstream press when she held a two-day gathering of friends and family before taking a fatal combination of medications. She became one of California's first residents to use the state's new law allowing physicians to help terminally ill people end their lives…
In the latest study, known as the the Cohort Study of Oxidative Stress (COSMOS), researchers at multiple institutions sought to determine if there were possible associations between cognitive, behavioral, and psychiatric/psychosocial impairments in ALS patients, and the wish to die…
“Being depressed was not related to having a wish to die,” said the principal study author Hiroshi Mitsumoto, MD, FAAN, the Wesley J. Howe professor of neurology at Columbia University at the Neurological Institute of New York and New York-Presbyterian Hospital/Columbia University Medical Center. Of the 62 patients who expressed a wish to die, only 23 were determined to be clinically depressed…
Still, he noted, the study did find that patients with behavioral impairment showed “considerable and consistent” associations between disease characteristics, and were more likely to have depressive symptoms, lower quality of life and higher stress levels. Patients with behavioral impairment were more likely to to have depressive symptoms, lower levels of positive affect and higher levels of negative affect, and higher mean scores of hopelessness, lower quality of life, and higher stress levels…
In the study, the researchers looked at 247 recently diagnosed ALS patients, 32 percent of whom had neither cognitive nor behavioral impairment. Of those who had cognitive impairment, 90 percent were in the mild to moderate range, and 10 percent had severe cognitive impairment. Twelve percent had a major or minor depressive disorder…
“That way if there are cognitive, behavioral, and psychological issues noted, the patient can be properly treated and appropriate counseling should be given,” he said. “The goal is to take care of the patient and the family, and be aware of these issues, because the wish to die and physician-assisted death issue will come up more and more in the future, so we simply cannot ignore them.”…
Linda Ganzini, MD, MPH, professor of psychiatry and medicine at Oregon Health and Science University in Portland, agreed that loss of autonomy is a primary concern. ALS patients are 30 times more likely to die with physician-assisted death in Oregon, compared to all other deaths, and about 3 percent of ALS patients choose that option…
“For me and people in the field working with ALS patients, this study is reassuring that depression isn't much of a worry as part of their decision-making capacity as much as we have feared,” said Dr. Ganzini.“It's still very important to test patients for their understanding of their options, whether it's about the disease or treatment, and whether they understand the options of palliative measures that might improve their quality of life and make them want to live longer.”
Dr. Katz did not feel that the study findings would necessarily help neurologists respond to requests for physician-assisted death. Patients who were demented and who had severe depression would not be allowed to be part of physician-assisted suicide, he said, because they don't have decision-making capacity, adding that the laws specifically address the role of depression.
“Those who feel strongly that physician-assisted death is a bad idea will find reasons to either refute what the data provide in this article or will say it's irrelevant because physician participation in death is never justifiable within the purview of professional responsibility,” said Dr. Russell, chairman of the Ethics, Law and Humanities, a joint committee of the AAN, American Neurological Association and the Child Neurology Society. “For the physicians who endorse participation in hastened death when lawful and when terminally ill patients request it, it will perhaps make them feel slightly better about their participation because there has been an unanswered question about whether depression interferes with a person's decision-making capacity.”