Designing with (Political) Complexity: Understanding Stakeholders, Emotion, Time, and Technology in the Case of Medical Aid-in-Dying

Abstract

In today’s increasingly technological society, human activity cannot be properly understood without referencing computing artifacts. As we interact with and through these artifacts in everyday life, they affect our emotions and sensibilities, our thinking and decisions, and how we act individually and collectively. Designers of artifacts, on reflection, inevitably take part in shaping the sociopolitical fabric our society. With this dissertation my overarching goal is to support, or rather cultivate and transform, the ways people understand, communicate, and act upon sociopolitical issues through design. I conducted investigations on stakeholders, emotion, time, and technology in the case of medical aid-in-dying. Medical aid-in-dying invokes diverse (and often conflicting) perspectives among stakeholders, providing a rich context for investigating how to design technology vis-à-vis a complex, multi-faceted process of social change. Specifically, I conducted semi-structured and task-based interviews with 27 professionals (15 health care workers and 12 NGO volunteers), who worked with patients considering medical aid-in-dying. I examined communication media and challenges, sensitive keywords and terminology, and stakeholders. Entangled in the web of complex social dynamics, my work raises methodological and ethical challenges, and calls for new design methods and frameworks. Methodologically, my dissertation contributes two new design methods—Stakeholder Tokens for eliciting diverse stakeholders and their interaction dynamics, and Meanings and Emotions for addressing participants’ emotions and sensibilities around controversial topics. Theoretically, the findings from this dissertation broaden human-computer interaction (HCI)’s understanding of publics by conceptualizing publics as a sociopolitical process of evolving public consciousness rather than as embodied persons who are somehow parallel to the concept of users. In addition, the findings extend value sensitive design’s conceptualization of stakeholders to include frameworks for excluded stakeholders, core and peripheral stakeholders, and difficult stakeholders. The findings also extend multi-lifepsan design by introducing a new category of multi-lifespan problem—which I call “slowly evolving public consciousness.” At the broadest level, my dissertation contributes to a fuller understanding of and richer discussion around what it means to design with publics in complex sociopolitical contexts.