Amy Nolen, Noah Zweig, Debbie Selby, Michael J Bonares
In patients with ALS receiving specialist palliative care, use of NIV was associated with a lower likelihood of requesting a MAiD referral, while rural residence was associated with higher odds of referral. These findings suggest that decisions regarding MAiD may be influenced less by disease severity than by preferences regarding life-prolonging interventions and warrant further investigation.
BACKGROUND: Patients with amyotrophic lateral sclerosis (ALS) have among the highest rates of medical assistance in dying (MAiD), yet factors associated with requesting MAiD remain poorly understood. We examined sociodemographic and clinical characteristics associated with MAiD referral and receipt among patients with ALS receiving specialist palliative care.
METHODS: We conducted a retrospective sequentially matched cohort study of patients attending a multidisciplinary ALS clinic at a Canadian tertiary care center. Patients who requested a MAiD referral were matched with the next consecutive patient without a MAiD request. Multivariable logistic regression identified factors associated with MAiD referral and, among referred patients, receipt of MAiD.
RESULTS: The cohort included 272 patients (130 MAiD referrals; 142 no referral). Rural residence was independently associated with higher odds of requesting a MAiD referral (adjusted odds ratio [aOR] 2.38, 95% confidence interval [CI] 1.02-5.58), whereas non-invasive ventilation (NIV) was associated with lower odds (aOR 0.56, 95% CI 0.32-0.90). Gastrostomy tube use demonstrated a non-significant trend toward lower odds of MAiD referral (aOR 0.59, 95%CI 0.33-1.07). Age, sex, and limb and bulbar symptom severity were not associated with MAiD referral. Among patients referred for MAiD, no factors were independently associated with receipt of MAiD.
CONCLUSION: In patients with ALS receiving specialist palliative care, use of NIV was associated with a lower likelihood of requesting a MAiD referral, while rural residence was associated with higher odds of referral. These findings suggest that decisions regarding MAiD may be influenced less by disease severity than by preferences regarding life-prolonging interventions and warrant further investigation.