Medical versus social egg freezing: the importance of future choice for women's decision-making
Monash Bioethics ReviewMichiel De Proost, Alexis Paton
2022
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.
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Managerial thinking in neonatal care: a qualitative study of place of care decision-making for preterm babies born at 27–31 weeks gestation in England
BMJ OpenCaroline Cupit*, Alexis Paton, Elaine Boyle, Thillagavathie Pillay, Natalie Armstrong, Victor L Banda, Vasiliki Bountziouka, Kelvin Dawson, Elizabeth S Draper, Abdul Qader T Ismail, Bradley Manktelow, Neena Modi, Oliver Rivero-Arias, Sarah E Seaton, Miaoqing Yang,
2022
Objectives: Preterm babies born between 27 and 31 weeks of gestation in England are usually born and cared for in either a neonatal intensive care unit or a local neonatal unit—with such units forming part of Operational Delivery Networks. As part of a national project seeking to optimise service delivery for this group of babies (OPTI-PREM), we undertook qualitative research to better understand how decisions about place of birth and care are made and operationalised. Design: Qualitative analysis of ethnographic observation data in neonatal units and semi-structured interviews with neonatal staff. Setting: Six neonatal units across two neonatal networks in England. Two were neonatal intensive care units and four were local neonatal units. Participants: Clinical staff (n=15) working in neonatal units, and people present in neonatal units during periods of observation. Results: In the context of real-world neonatal practice, with multiple (and rapidly-evolving) uncertainties relating to mothers, babies and unit/network capacity, ‘best place of care’ protocols were only one element of much more complex decision-making processes. Staff often made judgements from a less-than-ideal starting point, and were forced to respond to evolving clinical and organisational factors. In particular, we report that managerial considerations relating to demand and capacity organised decision-making; demand and capacity management was time-consuming and generated various pressures on families, and tensions between staff. Conclusions: Researchers and policymakers should take account of the organisational context within which place of care decisions are made. The dominance of demand and capacity management considerations is likely to limit the impact of other improvement interventions, such as initiatives to integrate families into the neonatal care provision. Demand and capacity management is an important element of neonatal care that may be overlooked, but significantly organises how care is delivered.
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The Surveillance of Pregnant Bodies in the Age of Digital Health: Ethical Dilemmas
The Routledge Handbook of Feminist BioethicsAlexia Paton
2022
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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
Journal of Bioethical InquiryAlexis Paton
2020
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.
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Parents’ decision-making following diagnosis of a severe congenital anomaly in pregnancy: Practical, theoretical and ethical tensions
Social Science and MedicineAlexis Paton*, Natalie Armstrong, Lucy Smith, Robyn Lotto
2020
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.
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Seven features of safety in maternity units: a framework based on multisite ethnography and stakeholder consultation
BMJ Quality and SafetyElisa Giulia Liberati, Carolyn Tarrant, Janet Willars, Tim Draycott, Cathy Winter, Karolina Kuberska, Alexis Paton, Sonja Marjanovic, Brandi Leach, Catherine Lichten, Lucy Hocking, Sarah Ball, Mary Dixon-Woods*, the SCALING Authorship Group, Cathy Bevens, Lia Brigante, Kate Brintworth, Jenni Burt, Carol Carlile, Denise ChafferShow et al.
2020
Background: Reducing avoidable harm in maternity services is a priority globally. As well as learning from mistakes, it is important to produce rigorous descriptions of ‘what good looks like’. Objective: We aimed to characterise features of safety in maternity units and to generate a plain language framework that could be used to guide learning and improvement. Methods: We conducted a multisite ethnography involving 401 hours of non-participant observations 33 semistructured interviews with staff across six maternity units, and a stakeholder consultation involving 65 semistructured telephone interviews and one focus group. Results: We identified seven features of safety in maternity units and summarised them into a framework, named For Us (For Unit Safety). The features include: (1) commitment to safety and improvement at all levels, with everyone involved; (2) technical competence, supported by formal training and informal learning; (3) teamwork, cooperation and positive working relationships; (4) constant reinforcing of safe, ethical and respectful behaviours; (5) multiple problem-sensing systems, used as basis of action; (6) systems and processes designed for safety, and regularly reviewed and optimised; (7) effective coordination and ability to mobilise quickly. These features appear to have a synergistic character, such that each feature is necessary but not sufficient on its own: the features operate in concert through multiple forms of feedback and amplification. Conclusions: This large qualitative study has enabled the generation of a new plain language framework—For Us—that identifies the behaviours and practices that appear to be features of safe care in hospital-based maternity units.
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Ethical road map through the covid-19 pandemic
BMJZoe Fritz, Richard Huxtable, Jonathan Ives, Alexis Paton, Anne Marie Slowther, Dominic Wilkinson
2020
The covid-19 pandemic has created profound ethical challenges in health and social care, not only for current decisions about individuals but also for longer term and population level policy decisions. Already covid-19 has generated ethical questions about the prioritisation of treatment, protective equipment, and testing; the impact of covid-19 strategies on patients with other health conditions; the approaches taken to advance care planning and resuscitation decisions1; and the crisis in care homes.
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The fundamental role of storytelling and practical wisdom in facilitating the ethics education of junior doctors
HealthAlexis Paton, Ben Kotzee
2019
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.
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Optimising neonatal service provision for preterm babies born between 27 and 31 weeks gestation in England (OPTI-PREM), using national data, qualitative research and economic analysis
BMJ OpenThillagavathie Pillay, Neena Modi, Oliver Rivero-Arias, Brad Manktelow, Sarah E Seaton, Natalie Armstrong, Elizabeth S Draper, Kelvin Dawson, Alexis Paton, Abdul Qader Tahir Ismail, Miaoqing Yang, Elaine M Boyle
2019
Introduction In England, for babies born at 23–26 weeks gestation, care in a neonatal intensive care unit (NICU) as opposed to a local neonatal unit (LNU) improves survival to discharge. This evidence is shaping neonatal health services. In contrast, there is no evidence to guide location of care for the next most vulnerable group (born at 27–31 weeks gestation) whose care is currently spread between 45 NICU and 84 LNU in England. This group represents 12% of preterm births in England and over onr-third of all neonatal unit care days. Compared with those born at 23–26 weeks gestation, they account for four times more admissions and twice as many National Health Service bed days/year.
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“Being Guided”: What Oncofertility Patients’ Decisions Can Teach Us about the Efficacy of Autonomy, Agency, and Decision- Making Theory in the Contemporary Clinical Encounter
IJFAB: International Journal of Feminist Approaches to BioethicsAlexis Paton
2019
Recent research on patient decision-making reveals a disconnect between theories of autonomy, agency, and decision-making and their practice in contemporary clinical encounters. This study examines these concepts in the context of female patients making oncofertility decisions in the United Kingdom in light of the phenomenon of “being guided.” Patients experience being guided as a way to cope with, understand, and defer difficult treatment decisions. Previous discussions condemn guided decision-making, but this research suggests that patients make an informed, autonomous decision to be guided by doctors. Thus, bioethicists must consider the multifaceted ways that patients enact their autonomy in medical encounters.
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About time: how time infuences and facilitates patient autonomy in the clinical encounter
Monash Bioethics ReviewAlexis Paton
2019
n this article I discuss the little examined relationship between time and patient autonomy. Using the fndings 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 infuenced 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 feld 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 infuence
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