According to a study published in the scientific journal Neurology, ALS patients are able to make decisions about their everyday life and their medical care, even with moderate cognitive or behavioral impairment.
“A request for surrogate decision-making in patients with ALS with mild cognitive impairment might not be justified,” wrote first author of the study Dr. Sarah Böhm and co-authors of the study “Medical decisions are independent of cognitive impairment in amyotrophic lateral sclerosis.”
The team of researchers led by Dr. Dorothée Lulé of the University of Ulm in Germany, analyzed 169 patients with ALS from a specialized German outpatient clinic. The patients completed a standardized questionnaire regarding their decision about PEG feeding (tube feeding directly into the stomach), non-invasive and invasive ventilation to support breathing, and the hypothetical situation of whether to discontinue those interventions in case of medical decline. The questionnaire also measured the patients’ attitudes about accelerating death.
More than half of the patients (55%) had deficits in at least one cognitive domain. As reported by the caregivers, 21 patients (15%) displayed behavioral changes described mostly as apathy (lack of feeling, emotion, interest, and concern). Among the 21 patients, 15 also showed other cognitive impairments.
The results indicated that those behavioral symptoms were mostly independent of cognitive deficits. Language impairments were associated with behavioral changes.
Further analysis showed that cognitive impairment and behavioral changes were not associated with the decisions made by patients about the use of PEG feeding, help with ventilation, using the interventions in case of medical decline, and the patients’ wish for accelerated death.
Previous research had shown that up to 40 percent of ALS patients may have cognitive impairment and alterations in their social behavior, such as apathy or reduced empathy. That led to the idea that patients with ALS may not be able to make appropriate decisions about their medical care.
The new study suggests that despite their cognitive and behavioral impairment, ALS patients can still make self-determined decisions and that requests by some doctors for surrogate decision-making may not be justified.