Relevant Degree Programs
Affiliations to Research Centres, Institutes & Clusters
I am open to inspiring and supporting research in any area at the intersection of biomedicine, neuroscience, and ethics.
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Graduate Student Supervision
Doctoral Student Supervision (Jan 2008 - Nov 2019)
Each year four million adults in North America require a surrogate to make decisions for them after being admitted to an intensive care unit (ICU). These decisions frequently involve the limitation of life-sustaining treatments. The current paradigm for making these decisions requires surrogates to rely first on any advance directives from the patient, then on the surrogate’s substituted judgment, and finally on best interests as judged by a reasonable person. Since this paradigm emerged 40 years ago, hundreds of research studies have revealed conceptual and operational deficiencies with it and have documented the harms it may cause to patients, surrogates, and medical professionals. The accumulated weight of these studies motivates the central research question of my dissertation: What shifts to the current paradigm for surrogate decision-making might alleviate its clinical and ethical deficiencies?I address this question as an interdisciplinary neuroethics scholar relying on the research methods of interpretive description and qualitative metasynthesis to organize the accumulated evidence into pragmatic recommendations. This work required three separate but linked studies. In Study #1 I mined research on surrogates’ experiences to identify factors that influence their decision-making. In Study #2 I synthesized research on surrogate-professional relationships to identify gaps and conflicts between the decision factors from Study #1 and surrogate-professional interactions. In Study #3 I analyzed all seven editions of Beauchamp and Childress’ Principles of Biomedical Ethics (1979 to 2013), charting the evolution of bioethical thought regarding incompetent patients, and linking these changes to the results of studies #1 and #2.The findings from these studies informed three changes I propose to the paradigm and practice of surrogate decision-making in ICU. My proposal integrates the decision standard of individual best interests, a standardized values portrait capturing the critical values underlying each patient’s individual best interests, and an interest-specific/time-limited decision protocol. Future work will be needed to test the validity and effectiveness of these changes individually and as an integrated solution. Ultimately, the changes I propose are designed to enhance the consistency, continuity, and coordination of care for decisionally incapacitated ICU patients and to yield substantial benefits to surrogate decision-makers and medical professionals.
The translation of novel brain technologies from the bench to the bedside has been characterized by a tension between priorities to promote rapid access to experimental interventions and the utilitarian pursuit of their evaluation with rigorous and time-intensive research. Through three studies conducted within the scope of this dissertation, I focus on a central research question: What are the perspectives of stakeholders about the translation of novel biotechnologies for neurodegenerative disease?Harnessing the strength of pragmatic neuroethics, I address this research question using both qualitative and quantitative analyses. In the first study, I explore the perspectives of patients with multiple sclerosis (MS) about the unproven but highly publicized chronic cerebrospinal venous insufficiency (CCSVI) intervention and the impact of its controversial trajectory on stem cell research. I find that patients are disappointed about the divestment of funds from other areas of research to support CCSVI trials, but maintain enduring hopes for future neurotechnological advancements, including stem cell research. In the second study, I examine how the news media represent timeframes for research and development of stem cell interventions for MS and other neurodegenerative diseases. I find that news articles celebrate the benefits of stem cell research with little context of its caveats. In contrast to prior studies, however, I discover that they also conscientiously convey caution about stem cell tourism and describe a lengthy trajectory between research and clinical availability of therapeutics. In the third study, I explore the perspectives of patients with MS and clinicians responsible for their care about the pace of research and development for stem cell interventions. Here I describe the urgency that patients feel to access stem cell interventions and their desire to learn more about the research process. Clinicians suggest strategies for dialogue with their patients that can clarify translational timeframes and inform hopes. Overall, the findings bring together the voices of key stakeholders and support a commitment to socially minded translation of novel neurotechnologies for neurodegenerative disease.
No abstract available.
No abstract available.