Center for Medical Ethics and Health Policy

Family and Clinician Perceptions in Disorders of Consciousness

Master
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Project Description

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This is a research project studying disorders of consciousness (DOC) patients’ family members’ and clinical care team members’ views on consciousness and its moral significance. This research is investigating the following questions by interviewing family members and clinicians:

  • What are the perceptions of consciousness regarding vegetative state (VS) and minimally conscious state (MCS) patients, as perceived by those patients' family members and clinicians. How do family members think about consciousness?
  • How do VS/MCS patients' family members and clinicians perceive the significance of this consciousness. Is it better to be minimally conscious or not conscious at all? How does degree of consciousness factor into decision making about life support?
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Supported by: TIRR Memorial Herman

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Project Personnel

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Principal Investigators

Jennifer Blumenthal-Barby, Ph.D., Principal Investigator

Sunil Kothari, M.D., Principal Investigator, Medical Director TIRR Disorders of Consciousness Program

Project Personnel

Katherine O'Brien, Ph.D., Clinical Neuropsychologist at TIRR

Center Project Personnel

Kristin Kostick, Ph.D., Qualitative Researcher

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Publications

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Peterson A, Kostick K, O’Brien K, Blumenthal-Barby JS. Seeing Minds in Disorders of Consciousness Patients. Brain Injury. 2019;1-9.

Kostick K, Kothari S, O’Brien K, Halm A, Blumenthal-Barby JS. Conceptualizations of Consciousness and Continuation of Care Among Family Members and Health Professionals Caring for Patients in a Minimally Conscious State. Disability and Rehabilitation. 2019.

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Presentations

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Seeing Minds in Disorders of Consciousness Patients” (lead: Andrew Peterson, w/ JBB and Kostick) American Society for Bioethics and Humanities Annual Meeting. Pittsburgh, October 2019

“Consciousness and Its Moral Significance: Perspectives of Family Members and Health Professionals Caring for Patients in a Minimally Conscious State” (KK and JBB) Neuroethics Network. Paris, France, June 2019

JBB “Consciousness and Its Moral Significance—Perspectives from Caregivers of Patients in a Minimally Conscious State” American Society for Bioethics and Humanities Annual Meeting. Kansas City, October 2017

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