Ethical, Psychological and Social Un/certainties in the Face of Deemed Consent for Organ Donation in England.

Deemed consent legislation for deceased organ donation was introduced in England in 2020, and is considered a vital part of the new UK NHS Blood and Transplant's 10-year strategy to increase consent for organ donation. Despite the legislation containing safeguards to protect the public, the introduction of deemed consent creates ethical, psychological and social un/certainties for healthcare professionals in their practice. In this paper, we offer insights into healthcare professionals' perspectives on deemed consent, drawn from interview data with 24 healthcare professionals in an NHS Trust in England, prior to the introduction of the legislation. Whilst participants supported deemed consent in principle, they were concerned that it would present a threat to the nature of donation as a 'gift'; the notion of informed consent (or non-consent); and the autonomy of donors, their relatives, and their own roles as health professionals, posing dilemmas for practice. We argue that healthcare professionals present themselves as guardians of potential (non)donors and thus as having ethics and integrity in their own practice. We draw conclusions around the values and principles that matter to healthcare professionals when contemplating consent in deceased donation which will be useful for organ donation committees and ethics forums.

Engaging Tomorrow's Doctors in Clinical Ethics: Implications for Healthcare Organisations.

Clinical ethics can be viewed as a practical discipline that provides a structured approach to assist healthcare practitioners in identifying, analysing and resolving ethical issues that arise in practice. Clinical ethics can therefore promote ethically sound clinical and organisational practices and decision-making, thereby contributing to health organisation and system quality improvement. In order to develop students' decision-making skills, as well as prepare them for practice, we decided to introduce a clinical ethics strand within an undergraduate medical curriculum. We designed a programme of clinical ethics activities for teaching and assessment purposes that involved using ethical frameworks to analyse hypothetical and real-life cases in uni- and inter- professional groups. In this paper, we draw on medical student feedback collected over 6 years to illustrate the appeal to students of learning clinical ethics. We also outline the range of benefits for students, healthcare organisations, and the field of clinical ethics arising from tomorrow's doctors experiencing clinical ethics early in their training. We conclude by briefly reflecting on how including clinical ethics within tomorrow's doctors curricular can secure and continue future engagement in clinical ethics support services in the UK, alongside the dangers of preparing students for organisational cultures that might not (yet) exist. We anticipate the findings presented in the paper will contribute to wider debates examining the impact of ethics teaching, and its ability to inform future doctors' practice.

An Alternative View of Self-Discharge Against Medical Advice: An Opportunity to Demonstrate Empathy, Empowerment, and Care.

In this article, we present the experiences of discharging against medical advice from the perspectives of 17 hospital and community-based health care practitioners, and 16 patients, and relatives from a range of medical and surgical wards. Semistructured, in-depth interviews were conducted and thematically analyzed. We identified that practitioners, patients, and relatives frequently expressed empathy for each other during the interviews, and discharge against medical advice was presented as a way for patients to have control over their health. Contrary to predominantly negative framings that highlight increased mortality and morbidity, and portray people who discharge against medical advice as poor decision makers, we conclude discharge against medical advice can be framed positively. It can be an opportunity to empathize, empower, and care. We recommend that the vocabulary used in hospital discharge against medical advice policies and documents should be updated to reflect a culture of medicine that values patient autonomy, patient centeredness, and shared decision making.

Interprofessional spanning and building boundaries when supporting potential embryo donors to stem cell research.

When patients undergo fertility treatment, it is likely that a surplus of embryos will be created. The existence of these surplus embryos creates responsibilities for the clinics where they are stored and for the people who own them. Since 2001, the owners of the surplus embryos in the UK have the option to donate them to be used in stem cell research (SCR). This development has generated a new population-potential embryo donors to SCR-who have unique support needs as they are neither fertility patients nor donors. However, little is known how lay and professional stakeholders associated with fertility treatment and SCR have conceptualised the support needs of potential embryo donors to SCR or have responded to the additional task once the option became available. In this article, we draw on Gieryn's concept of boundary-work to explore how the emergence of donating embryos to SCR has provided opportunities for embryologists, counsellors, and scientists to shift, adapt, or confirm their roles, knowledge base, and areas of expertise. We present a thematic analysis of 21 in-depth, semi-structured interviews conducted with UK lay and professional stakeholders associated with fertility treatment and SCR. We conclude with reflections on the implications this boundary-work has for those contemplating donating embryos to SCR and the care they receive when making their decision. Such insights are pertinent given the current policy and practice discussions led by the National Donation Strategy Group to improve the care of donors in the UK.

Building reflective spaces for junior doctors to promote ethical, legal and professional learning relating to clinical practice.

BACKGROUND: Concerns have been raised surrounding the training of Foundation Doctors on the ethical, legal and professionalism (ELP) aspects of clinical practice, leading to some to claim a degree of educational neglect. Foundation Doctors are junior doctors in the United Kingdom within the first 2 years of their medical career since graduating from medical school. APPROACH: Lancaster University and Health Education England North West (HEE NW) introduced a series of training materials specially created to meet the ELP training needs of Foundation Doctors, which were piloted by Foundation Schools. EVALUATION: The training was delivered to Foundation Doctors in first and second year of their training either online or in person. The facilitators were clinical senior doctors and did not have an academic qualification in ELP. Some large Foundation Schools used two training packs to provide an optional ELP day for their Foundation Doctors, while individual hospitals within a Foundation School used the training packs to provide training as part of their mandatory weekly training for Foundation Doctors. Feedback was gathered from Foundation Doctors and training facilitators when a training pack was piloted. IMPLICATIONS: Foundation Doctors were able to make links between the messages delivered in the training to their own clinical practice. Foundation Schools have incorporated the training packs into the 2-year Foundation Programme, which creates the possibility for ELP training to become standardised across Foundation Schools.

Rethinking gamete donor care: A satisfaction survey of egg and sperm donors in the UK.

OBJECTIVE: Despite poor clinic communication and staff treatment being reported by donors, high rates of overall satisfaction are still reported in surveys. This study will evaluate the importance of communication and interaction between donors and fertility clinic staff in gamete donor care. METHODS: We report on 120 egg and sperm donors' responses to a UK-wide online satisfaction survey. The survey focused on donors' interactions with fertility clinic staff pre-, during, and post- donation. Basic cross-tabulation was performed on the data using online survey software. Textual data was read and extracts identified, which illustrated and expanded on the findings from the numerical data. Diagrammatic modeling was also utilised to analyse the textual data, with particular focus to relationships between the donors and clinic staff, the main activities within the gamete donation process, and how these activities may affect donor satisfaction with the gamete donation process. RESULTS: Donors expressed concern for the infertile couple and the resulting child; conveyed frustration at not receiving information on the expenses they could claim; felt lost in the system regarding the ease of making clinic appointments, and once made they were routinely not seen on time for these appointments. Donors also negatively commented on aftercare, the location and condition of the donation room, and information on contraception. In addition, Ovarian Hyperstimulation Syndrome was frequently reported, with these egg donors believing that clinic staff were not concerned with their physical or emotional well-being, but were instead disproportionately focused on extracting the eggs. CONCLUSIONS: The multifaceted notion of donors highlights the complexity inherent to the gamete donation process, which comprises various aspects of uncertainty in the donation system, and ambiguity in the donation process. Categorising donors as Altruist, Customer, and Patient, conveys the particular importance of staff communication and treatment in donor care. These categories are not mutually exclusive however, in that an individual donor may experience more than one of these perspectives during the course of their gamete donation journey. Finally, there were a number of exemplar cases, where donors reported high satisfaction throughout, and these correlated with them being given a single point of contact at the clinic. Subject to resource constraints, we suggest that this practice should be implemented throughout clinics in the UK, so that donors have access to dedicated clinic staff who not only support them emotionally and physically throughout the gamete donation process, but also ensure that communication is open, clear, timely, and consistent.

Giving to receive? The right to donate in umbilical cord blood banking for stem cell therapies.

OBJECTIVES: To explore the views of lay and professional stakeholders about the donation of cord blood to public banks in England and the policies surrounding it. METHODS: Qualitative in-depth interviews were undertaken between April 2009 and August 2010 with 62 participants based in England who play a key role in cord blood banking and therapy. All interviews were recorded, transcribed in full, and coded and analysed thematically. RESULTS: Participants claimed pregnant women had a right to know of the value of cord blood. This highlighted the flaws of the existing donation infrastructure, which was portrayed as playing a significant role in determining public health. Participants called for a right to donate cord blood to readdress the inequity in healthcare services for pregnant women and transplant recipients. Donors maintained a sense of right over their donation when they discussed cord blood donation as potentially benefiting their family as well as society. CONCLUSION: In order to keep receiving donated body parts, tissue and blood, there is a need to take into account the way in which donation operates within a prevalent 'rights' discourse.

'Two's company--Three's a crowd': the collection of umbilical cord blood for commercial stem cell banks in England and the midwifery profession.

OBJECTIVE: to explore how lay and professional stakeholders within umbilical cord blood banking discussed midwives' and privately employed phlebotomists' roles in light of commercial UCB collection, and what insights this offers of midwifery authority and power. DESIGN: qualitative study using face-to-face, semi-structured interviews that were digitally recorded, transcribed and coded according to themes relating to the research aims. SETTING: across England. PARTICIPANTS: 61 interviews were conducted between April 2009 and August 2010 with lay and professional stakeholders within umbilical cord blood banking. FINDINGS: the space and access requirements for privately employed phlebotomists to conduct their work were discussed and highlighted the discursive and spatial boundary-work conducted by, or on behalf of, midwives to retain their authority over the umbilical cord blood and labour rooms. KEY CONCLUSIONS: midwives were portrayed as accommodating privately employed phlebotomists to some extent. It was implied that midwives did so because phlebotomists conformed to implicit boundaries, which required respecting midwives' authority over the labour ward, room and the umbilical cord blood. In turn, midwives' power was protected. IMPLICATIONS FOR PRACTICE: the findings highlight the important role of spatial boundaries and the significance of the organisation of spaces when implementing new services within health care.