Agency, uncertainty and power: Why people consider assisted dying at the end of life

Abstract

Assisted dying is a significant issue in Aotearoa New Zealand given the continued controversy over the End of Life Choice Bill (2017), Act (2019) and forthcoming referendum. However, the views of people approaching the end of life are largely missing from the public debate and New Zealand research. My PhD research is an open enquiry into the perspectives of people with approximately one year’s life expectancy who would have considered an assisted death (if it were available). Fourteen participants and six family members were interviewed.

My thesis focuses on the socio-cultural values that dying people used to explain their views on assisted dying. The conceptual framework incorporates both the sociology of death and dying and the ‘wish to hasten death’ literatures. The discursive and assemblage methodological approaches were chosen because of their analytic power to illuminate the dynamism, the contextual and relational elements of the wish to hasten death, overlooked by much of the literature.

Identifying an assemblage of medicalised dying demonstrated that participants were not passive recipients of medicalisation; rather they rejected, co-opted and embraced it. I illustrate how participants strategically re-medicalised dying by framing their dying, death and suffering as activities that require medical intervention to achieve the good death that ‘medicine’ had promised them.

Assisted dying appealed because it offered individual control and mitigated the risk of dying badly. Yet any regime of assisted dying reinforces health professionals as in control of dying and increasingly controls freedom. Within this paradox of control, I argue there is still scope for choice, activism and an ethical making of the self, although limited by the biopolitical regime, that equates to a degree of freedom for participants.

Participants contested normative discourses about life, dying and death. I show how participants sought to expand the boundaries of acceptable dying and to normalise assisted dying. Foucault’s principles of exclusion, rarefaction and games of truth shed light on the power structures that privilege some discourses, ideologies and groups over dying persons’ experiences.

Participants described being disenfranchised by medicine’s rejection of assisted dying as a legitimate option at the end of life. In the face of this perceived epistemic injustice and uncertainty, assisted dying offered a technique of certainty against the risk that dying badly posed for their ontological security. My research suggests participants exercise agency through their attempts to ‘strategically negotiate’ and re-medicalise dying, and contest normative discourses of dying and longevity for their own aims. These three concepts—strategic negotiators, contesting normative dying, and freedom within the paradox of control—constitute the original contributions of this research.

If the debate in Aotearoa New Zealand on assisted dying is to be moved forward, attention must be paid to the contextual reasons people would consider choosing assisted dying. The wish to have the option of assisted dying is a manifestation of a new paradigm of dying that reflects changing individual, societal and ideological concepts about: what is a good life, what is a good death and importantly in between, what is undesirable dying.