Daniel Karlin, Joanna Smolenski, Daniel Edward Callies, Joseph A Raho
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Assessing Capacity and Exploring Goals of Care in Locked-In Syndrome: A Clinician's Guide.
Patients with locked-in syndrome (LIS) pose unique ethical challenges for decision making, given the complexities of communication. However, some of these patients may retain the ability to participate in decisions regarding their care, including whether to continue life-sustaining treatment or pursue comfort care only. Following a deidentified case, this article has 2 central aims. First, it examines the ethical foundations of decision making and the complexities of capacity assessments for this patient population. Second, it offers a practical guide for neurologists to use when making such evaluations. This guide facilitates a way of communicating with patients with LIS so that clinicians may more systematically assess the patient's capacity to make their own consequential medical decisions.
期刊介绍:
Neurology® Genetics is an online open access journal publishing peer-reviewed reports in the field of neurogenetics. The journal publishes original articles in all areas of neurogenetics including rare and common genetic variations, genotype-phenotype correlations, outlier phenotypes as a result of mutations in known disease genes, and genetic variations with a putative link to diseases. Articles include studies reporting on genetic disease risk, pharmacogenomics, and results of gene-based clinical trials (viral, ASO, etc.). Genetically engineered model systems are not a primary focus of Neurology® Genetics, but studies using model systems for treatment trials, including well-powered studies reporting negative results, are welcome.