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Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care
Published on: February 16, 2011
Supporting Patients with Autism Spectrum Disorder and Neurodivergence in Serious Illness Decision-Making
Ryanne Lehenaff1, Ronnye C Rutledge2, Priscilla Kim3
1Department of Medicine, Emory University School of Medicine, Atlanta, GA, USA. rlehena@emory.edu.
Abstract:
Neurodivergence and developmental disorders can influence how a patient interacts with their health, medical team, and the healthcare system overall. We present the case of a man with autism spectrum disorder (ASD) who was referred to palliative care clinic for assistance in determining his decision-making capacity to defer treatment for his progressive prostate cancer. Though many validated tools exist to assist providers in discussions of serious illness, none is validated in populations with neurodivergence, who have specific needs and challenges. As this population of adults living with ASD ages, it will be essential to support their decision-making surrounding diagnostic tests and medical treatments. Through this case, we highlight key components to engage patients with neurodivergence in health-related decisions. These strategies include using visual aids, avoiding abstractions, maintaining a low-stimulation sensory environment, and involving key stakeholders (e.g., family members and/or caregivers) to support decision-making. We also highlight the complex impact of multiple comorbid neuropsychiatric conditions on healthcare decision-making, and the resultant need for careful thought and innovative communication strategies this necessitates.
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