Patient choice as illusion: autonomy and choice in end-of-life care in the United Kingdom and New Zealand

Abstract

Death is a reality of life as we will all die. Despite this inevitability, death in the twenty-first century remains unwelcome and has been sequestered into the enclaves of medical practice as a means of quelling the rising tide of fear it provokes. Using a narrative analysis approach to examine online social media commentary of personal experiences, this research explores the reality of patient choice at end-of-life in the United Kingdom (UK) and New Zealand. Specifically it examines the barriers encountered when individuals seek control of the dying trajectory and how this unfolds for the patient compliant with the medicalised ‘good death’ and for those seeking the right-to-die; contextualising these issues within the human rights framework. This research explores the means through which medical practice maintains power over the dying individual, actualised through the use of specialist knowledge and the medical vernacular. It compares the use of specialist palliative models of care with euthanasia and assisted suicide, and examines the selective collaboration between medicine and law as a means of subverting the individual who attempts to disrupt the contemporary accepted norms when dying. My research suggests that patient choice when dying is an illusion in practice, despite individual choice being considered an essential component in clinical decision making. I highlight that those seeking the right-to-die disrupt the normative compliance expected in the doctor/patient relationship, thus, positioning them as deviant and other. I suggest that there is a potential weakness in the construct of medical power and is evidenced in the selective reliance upon law when clinical decisions are challenged by the deviant individual. Finally, I suggest that although the equity in the doctor/patient relationship remains unbalanced at present the right to choice at end-of-life remains a potent prospect; with the re-invigoration and re-presentation of the Ars Moriendi having the potential to reflect the self-centricity of the contemporary Western individual to access the ‘good death’ of choice.