Factors affecting do-not-resuscitate decisions among patients with amyotrophic lateral sclerosis in Taiwan

by Mei-Hsing Chuang, Jiunn-Rong Hsu, Chia-Wei Hung, Yu Long Hwang, Chih-Ching Lee, Hsiu-Yi Shen, Fu-Kang Chang, Li-Lin Kuo, Saint Shiou-Sheng Chen, Sheng-Jean Huang

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease. Usually, patients survive for approximately 2–4 years after the onset of the disease, and they often die of respiratory failure. This study examined the factors associated with signing a “do not resuscitate” (DNR) form in patients with ALS. This cross-sectional study included patients diagnosed with ALS between January 2015 and December 2019 in a Taipei City hospital. We recorded patients’ age at disease onset; sex; presence of diabetes mellitus, hypertension, cancer, or depression; use of invasive positive pressure ventilator (IPPV) or non-IPPV (NIPPV); use of nasogastric tube (NG) or percutaneous endoscopic gastrostomy (PEG) tube; follow-up years; and number of hospitalizations. Data from 162 patients were recorded (99 men). Fifty-six (34.6%) signed a DNR. Multivariate logistic regression analyses revealed that the factors associated with DNR included NIPPV (OR = 6.95, 95% CI = 2.21–21.84), PEG tube feeding (OR = 2.86, 95% CI = 1.13–7.24), NG tube feeding (OR = 5.75, 95% CI = 1.77–18.65), follow-up years (OR = 1.13, 95% CI = 1.02–1.26), and number of hospital admissions (OR = 1.26, 95% CI = 1.02–1.57). The findings suggest that end-of-life decision making among patients with ALS may often be delayed. DNR decisions should be discussed with patients and their families during the early stages of disease progression. Physicians are advised to discuss DNR with patients when they can speak and to offer palliative care options.