Judy Illes

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.

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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.

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Pain is one of the main reasons that adults seek health care, yet the management of chronic nonmalignant pain (CNMP) is framed by epistemological, ontological, ethical, and clinical uncertainties. As a subjective experience, CNMP presents challenges for both patients and health care providers. Opioid analgesics are commonly prescribed for CNMP. However, recent research questioning the long-term benefits of opioids for CNMP and the rapid rise in public health harms from prescription opioid abuse have led to concerns about iatrogenic addiction, drug-seeking behaviour, and medication diversion. Such concerns pose risks to the patient, to the health care provider, and to society, and may threaten the trust that provides the moral foundation of the therapeutic relationship. Drawing upon an interdisciplinary literature and methods from both bioethics and empirical neuroethics, this in-depth, multi-component single study focused on adults living in an urban setting in the Lower Mainland of British Columbia, Canada. Semi-structured interviews (N=27) were conducted with participants with chronic low back pain to explore their experiences of trust and trustworthiness in CNMP management. Grounded theory analysis of the data yielded four major themes: (1) fidelity and iatrogenic suffering; (2) communicating the invisible and subjective condition of chronic pain; (3) motive, honesty, and testimony; and (4) stigmatized identities. The findings were response-validated by two feedback groups comprising re-contacted interview participants (N=4) and physician specialists drawn from the same setting who care for patients living with CNMP and addiction (N=6).Qualitative analysis suggests that trust in CNMP management is challenged when patients perceive that their accounts of pain and suffering are considered by health care providers to lack credibility, feel unfairly accused of being deceptive, or sense a combination of both lack of credibility and deception.The dissertation concludes with a discussion of the practical implications of these findings in the context of the broader health care system, and with a proposal for how a trust- centred ethics of CNMP management can involve greater epistemic humility toward improved patient care.

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This program of work examines the effects of policy, ethics, and economics on the emerging field of stem cell research. The research seeks to understand how these factors influence the actions of stem cell scientists working in the United States and other jurisdictions, and collectively, these how these actions change the trajectory of a new biomedical field. In this work, I ask three fundamental questions: 1) In the United States, what are the political, social, and historical contexts that affect the deliberations of stem cell scientists? 2) How do stem cell scientists and other stakeholders describe their social worlds and their decisions as they grapple with policy, ethics, law, and economics in a rapidly evolving and controversial area of bioscience? And, 3) How do these individual and collective actions change the trajectory of stem cell research and experimental treatments for disability and disease?An approach using mixed methods is used to qualitatively and quantitatively examine these questions in four studies. Results of the first study describe the history of stem cell research in the United States, showing how the field is defined through its ethical, social, scientific and political discourse. The second, quantitative, project probes how embryonic stem cell scientists obtain and use essential research tools to do their work, and how policy can impact international trends in productivity. How stakeholders such as patients, scientists, and government officials communicate the results of stem cell research through the popular media forms the basis of the third quantitative effort. The final study is devoted to an in-depth ethical analysis of the world's first clinical trial using human embryonic stem cells. Overall, the results from this research provide new evidence that policy makers, patients, scientists, and stakeholders can use for navigating what is arguably called science's most promising frontier.

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