Dissertation Sophie Gloeckler

Abstract

Treatment decision-making in contemporary clinical practice has tended to tie beneficence and nonmaleficence to respect for patient autonomy. The present thesis aims to highlight that deference to autonomy has masked some of the underlying challenges and more confronting questions when it comes to providing care for those with severe illness or injury in contemporary clinical settings. The thesis consists of six papers divided across three sections, each of which draws attention to the fact that upholding patient autonomy is not a straightforward solution to the challenge of determining how to care for those who are seriously ill , injured, or facing end-of-life. The first section examines questions regarding the care of those with severe, persistent mental illness, exploring attitudes and beliefs around the possibility of making assisted suicide and palliative care available to these populations. The second section explores questions of methodology regarding how to measure whether incapacitated patients have received their preferred care, specifically when it comes to evaluating advance care planning efforts. Determining whether someone’s received care matched his or her preferred care is elusive to measure in practice. The last section explores the challenges of determining preferences in the event of incapacitating illness and injury, considering both the difficulty that someone faces trying to identify and declare his or her preferences in advance and the difficulty clinicians and loved ones face when tasked with making treatment decisions that reflect the will of another. This third section gives attention to the potential role and ethical implications of involving digital technology in such decision-making. The conclusion offers a reflection on the conceptualization of autonomy in contemporary care settings and can be read either at the end or before the main body to inform the reading of the included published papers.

Sophie Gloeckler