About time: how time influences and facilitates patient autonomy in the clinical encounter

In this article I discuss the little examined relationship between time and patient autonomy. Using the findings from a study on the experience of premenopausal cancer patients making fertility preservation decisions during their treatment, I focus on how the patients in the study understood time, and how this understanding interacted with and influenced their decision-making. I then analyse in more depth the importance of time in patient decision-making, and the relationship of time to concepts of patient autonomy and decision-making in the field of bioethics more generally. Focusing on the relational conception of autonomy, I conclude that time is an integral part of patient autonomy which warrants further research, such that it can be better integrated into concepts of patient autonomy, and the policy and guidelines that they inform and influence

The fundamental role of storytelling and practical wisdom in facilitating the ethics education of junior doctors

Practical wisdom is a key concept in the field of virtue ethics, and it has played a significant role in the thinking of those who make use of virtue when theorising medical practice and ethics. In this article, we examine how storytelling and practical wisdom play integral roles in the medical ethics education of junior doctors. Using a qualitative approach, we conducted 46 interviews with a cohort of junior doctors to explore the role doctors feel phronesis has in their medical ethics practice and how they acquire practical wisdom through storytelling as an essential part of their medical ethics education. Through thematic analysis of the interviews, we discuss the key role storytelling about moral exemplars and role models plays in developing medical ethics education, and how telling stories about role models is considered to be one of the most useful ways to learn medical ethics. We finish by developing an argument for why practical wisdom should be an important part of medical ethics training, focusing on the important role that phronesis narratives should have in teaching medical ethics

Issues of autonomy and agency in oncofertility: a socio-bioethical exploration of British adult female cancer patients making oncofertility decisions

PhD ThesisThis thesis examines from a socio-bioethical perspective British premenopausal cancer patients’ experiences with making oncofertility decisions. It uses original empirical research into the experiences of a small group of patients to address social, clinical and ethical concerns about how patients make decisions in the medical context. Several North American studies have noted that the ways in which cancer and fertility concerns are addressed in the medical context may affect patient decision-making. This thesis focuses specifically on how these experiences are influenced by the medical encounters in the UK, by exploring how female cancer patients make decisions about their future fertility. The thesis also examines whether social and bioethical theories of autonomy and agency adequately capture how decisions are made in practice, using empirical data to interrogate existing theory. To address these questions, semi-structured interviews were conducted with premenopausal cancer patients. Data from the interviews were analysed using sociological and bioethical theories in order to improve understandings of how this patient group makes decisions, and how they feel this experience could be improved. This research therefore contributes to the growing body of literature seeking to identify how patients make decisions within the medical context and what types of support are necessary to address the needs identified by patients. Furthermore, the thesis demonstrates how sociology as a discipline can be seen as a constitutive part of bioethics, with this project serving as an example of one way that bioethical research can be conducted through a sociological lens.Susan Channon Breast Cancer Trust for my fieldwor

Submission of evidence on the disproportionate impact of COVID 19, and the UK government response, on ethnic minorities and women in the UK

In this submission, we discuss why women and people from ethnic backgrounds (BAME) are, and will be, negatively affected by the COVID-19 virus and the government response. We describe how COVID-19 exacerbates underlying health inequalities. We highlight how existing medical guidance compound these inequalities by failing to take them into account. We discuss the negative effects that pandemic measures have had on women, in particular women asylum- seekers and women seeking reproductive health services. Finally, we present recommendations for short and long-term change to the pandemic response to avoid further harm and discrimination of people with these protected characteristics

Medical versus social egg freezing: the importance of future choice for women's decision-making

While the literature on oncofertility decision-making was central to the bioethics debate on social egg freezing when the practice emerged in the late 2000s, there has been little discussion juxtaposing the two forms of egg freezing since. This article offers a new perspective on this debate by comparing empirical qualitative data of two previously conducted studies on medical and social egg freezing. We re-analysed the interview data of the two studies and did a thematic analysis combined with interdisciplinary collaborative auditing for empirical ethics projects. Despite their different contexts, major similarities in women's decision-making and reasoning were found. We developed two main common themes. Firstly, women felt a clear need to plan for future options. Secondly, they manipulated decision-times by postponing definitive decisions and making micro-decisions. The comparison highlights that the passage of time and the preservation of future choice seems to permeate all aspects of the patient experiences in both studies. As a result of considering real-world lived experiences, we suggest that there are many overlaps in women's reasoning about egg freezing regardless of why they are making a decision to freeze. These overlaps are morally relevant and thus need to be further integrated into the existing arguments that have been canvassed in the flourishing egg freezing and fertility preservation debates across the field, and in policy and practice globally

Organising work in neonatal transfer: Optimising place of care for babies born moderately preterm

The organisation of neonatal units into geographically‐based networks that offer different levels of care is intended to ensure babies receive the care they need via transfers between different units. In this article, we explore the significant organisational work required in practice to accomplish such transfers. Conducted within a wider study of optimal place of care for babies born between 27 and 31 weeks’ gestation, we draw on ethnographic work exploring the accomplishment of transfers in this complex care context. We undertook fieldwork in six neonatal units across two networks in England, representing 280 hours of observation and formal interviews with 15 health‐care professionals. Drawing on Strauss et al.’s concept of the social organisation of medicine and Allen’s concept of ‘organising work’, we identify three distinct forms of such work central to the successful accomplishment of a neonatal transfer: (1) ‘matchmaking’, to identify a suitable transfer location; (2) ‘transfer articulation’, to successfully effect the planned transfer; and (3) ‘parent engagement’, to support parents through the transfer process. Our findings build on and extend Strauss et al. and Allen’s work by both highlighting the different forms of ‘organising work’ undertaken in this clinical context and the distribution of such work across different professional groups

Parents’ decision-making following diagnosis of a severe congenital anomaly in pregnancy:Practical, theoretical and ethical tensions

Patient involvement, in the form of shared decision-making, is advocated within healthcare. This is informed by the principlist account of patient autonomy that prioritises informed understanding, and decision-making free from coercion. This arguably over-simplifies the role of the social, whilst overlooking the role of culture and context in medical decision-making. Clinicians encourage patients to demonstrably make decisions in the principlist ‘style’ that fit with their understandings of ethically ‘correct’ ways to support patient decision-making. However, this expected ‘style’ is often not achieved in practice. In this article, we use empirical data from a qualitative study exploring parental decision-making following diagnosis or suspicion of a severe congenital anomaly in pregnancy. Our study was based in four fetal medicine clinics in England, comprising semi-structured interviews with 38 parents whose pregnancy was affected by a severe congenital anomaly, 18 interviews with fetal medicine clinicians, and audio-recordings of 48 consultations. Examination of the dynamics at play within different approaches to decision-making highlights how the idealised concepts proposed in theory fail to capture real-life experiences of medical decision-making. The influence of the patient-clinician relationship on decisions is brought to the fore, highlighting the influence of power dynamics in implicitly and explicitly influencing patient decisions, and the need to better address this in policy and practice

Fairness, Ethnicity, and COVID-19 Ethics:A Discussion of How the Focus on Fairness in Ethical Guidance During the Pandemic Discriminates Against People From Ethnic Minority Backgrounds

Recent weeks have seen an increased focus on the ethical response to the COVID-19 pandemic. Ethics guidance has proliferated across Britain, with ethicists and those with a keen interest in ethics in their professions working to produce advice and support for the National Health Service. The guiding principles of the pandemic have emerged, in one form or another, to favour fairness, especially with regard to allocating resources and prioritizing care. However, fairness is not equivalent to equity when it comes to healthcare, and the focus on fairness means that existing guidance inadvertently discriminates against people from ethnic minority backgrounds. Drawing on early criticisms of existing clinical guidance (for example, the frailty decision tool) and ethical guidance in Britain, this essay will discuss the importance of including sociology, specifically the relationship between ethnicity and health, in any ethical and clinical guidance for care during the pandemic in the United Kingdom. To do otherwise, I will argue, would be actively choosing to allow a proportion of the British population to die for no other reason than their ethnic background. Finally, I will end by arguing why sociology must be a key component in any guidance, outlining how sociology was incorporated into the cross-college guidance produced by the Royal College of Physicians