MEDICATIONS ALS PATIENTS TAKE IN THE LAST SIX MONTHS OF LIFE

摘要

Amyotrophic lateral sclerosis (ALS), an incurable neuromuscular disease, causes progressive paralysis resulting in respiratory failure and ultimately death. Although there are only 30,000 people nationwide living with ALS, this population is of significant public health concern as those afflicted with ALS suffer from progressive symptoms of disability, making them a particularly vulnerable population in need of public health advocacy for improved access to medications and care. As the symptoms of disability become increasing acute in the final months of life, achieving the best quality of life possible is of paramount importance. To achieve this, a number of medications exist to both treat the direct and indirect symptoms of ALS.The purpose of this thesis is to examine barriers terminal ALS patients experience in accessing medications, medication trends as ALS patients near death, and the effect of medications on quality of life for ALS patients in the terminal phase of the disease. Literature pertaining to the terminal phase of ALS was reviewed and an analysis of secondary data was performed. The data analyzed for this thesis was from the National Institute of Mental Health grant funded Living with ALS study, which collected medication data in the preceding months before death from terminal ALS patients. For the purposes of this analysis, patient medications were categorized into four domains: ALS treatment medications, palliative medications, mood medications, and other medications. The correlation between the medication domains and sociodemographic and quality of life indicators were investigated. Changes in medications over time were also investigated.Results of the analysis revealed that those with higher incomes and educational attainment were taking significantly fewer palliative medications. Additionally, those on Medicaid were on significantly fewer other medications. Finally, across all medication domains, medication use declined significantly as patients approached imminent death. These findings suggest that the medications used to treat the symptoms of ALS do little to improve symptoms and even less to improve quality of life. Future research recommendations include exploring patients' motivations for discontinuing medications, improving symptom management medications, and improving ALS patients' access to both pharmacological and non-pharmacological interventions to improve overall quality of life.