Living bioethics, theories and children's consent to heart surgery.

Background: This analysis is about practical living bioethics and how law, ethics and sociology understand and respect children's consent to, or refusal of, elective heart surgery. Analysis of underlying theories and influences will contrast legalistic bioethics with living bioethics. In-depth philosophical analysis compares social science traditions of positivism, interpretivism, critical theory and functionalism and applies them to bioethics and childhood, to examine how living bioethics may be encouraged or discouraged. Illustrative examples are drawn from research interviews and observations in two London paediatric cardiac units. This paper is one of a series on how the multidisciplinary cardiac team members all contribute to the complex mosaic of care when preparing and supporting families' informed consent to surgery. Results: The living bioethics of justice, care and respect for children and their consent depends on theories and practices, contexts and relationships. These can all be undermined by unseen influences: the history of adult-centric ethics; developmental psychology theories; legal and financial pressures that require consent to be defined as an adult contract; management systems and daily routines in healthcare that can intimidate families and staff; social inequalities. Mainstream theories in the clinical ethics literature markedly differ from the living bioethics in clinical practices. Conclusion: We aim to contribute to raising standards of respectful paediatric bioethics and to showing the relevance of virtue and feminist ethics, childhood studies and children's rights.

Children's understanding and consent to heart surgery: Multidisciplinary teamwork and moral experiences.

Mainstream law and ethics literature on consent to children's surgery contrasts with moral experiences of children and adults observed in two heart surgery centres. Research interviews were conducted with 45 practitioners and related experts, and with 16 families of children aged 6 to 15, admitted for non-urgent surgery, as well as an online survey. Thematic data analysis was informed by critical realism and childhood studies.Impersonal adult-centric mainstream literature assumes young children cannot consent. It is based on dichotomies: adult/child, competent/incompetent, respect or protect children, inform or distract them, use time swiftly or flexibly, verbal/non-verbal communication, respect or control children and reason/emotion.Through their moral experiences, adults and children resolve these seeming dichotomies. Through understanding young children's reasoning and emotions about complex distressing decisions related to heart surgery, adults share knowledge, control, trust and respect with them. They see children's consent or refusal before non-urgent surgery as a shared personal moral experience within the child's life course, beyond mere legal compliance. Adults help children to understand and 'want' the surgery that offers things they value: better health or to 'be more like their friends'. If children are not convinced, sometimes surgery is postponed or occasionally cancelled.

Living bioethics, clinical ethics committees and children's consent to heart surgery.

This discussion paper considers how seldom recognised theories influence clinical ethics committees. A companion paper examined four major theories in social science: positivism, interpretivism, critical theory and functionalism, which can encourage legalistic ethics theories or practical living bioethics, which aims for theory-practice congruence. This paper develops the legalistic or living bioethics themes by relating the four theories to clinical ethics committee members' reported aims and practices and approaches towards efficiency, power, intimidation, justice, equality and children's interests and rights. Different approaches to framing ethical questions are also considered. Being aware of the four theories' influence can help when seeking to understand and possibly change clinical ethics committee routines. The paper is not a research report but is informed by a recent study in two London paediatric cardiac units. Forty-five practitioners and related experts were interviewed, including eight members of ethics committees, about the work of informing, preparing and supporting families during the extended process of consent to children's elective heart surgery. The mosaic of multidisciplinary teamwork is reported in a series of papers about each profession, including this one on bioethics and law and clinical ethics committees' influence on clinical practice. The qualitative social research was funded by the British Heart Foundation, in order that more may be known about the perioperative views and needs of all concerned. Questions included how disputes can be avoided, how high ethical standards and respectful cooperation between staff and families can be encouraged, and how minors' consent or refusal may be respected, with the support of clinical ethics committees.

The involvement and autonomy of young children undergoing elective paediatric cardiac surgery: a qualitative study.

BACKGROUND: Standards generally reported in the literature about informing children and respecting their consent or refusal before elective heart surgery may differ from actual practice. This research aims to summarize the main themes in the literature about paediatric anaesthesia and compare these with research findings on how health professionals counsel young children before elective heart surgery, respect their consent or refusal, and maintain patient-centred care. METHODS: This qualitative research involved: literature reviews about children's consent to surgery and major interventions; observations of wards, clinics and medical meetings in two paediatric cardiology departments, October 2019 to February 2020; audio-recorded semi-structured interviews with 45 hospital staff, including 5 anaesthetists, and related experts, November 2019 to April 2021; interviews with 16 families, with children aged 6- to 15-years and their parents shortly after elective heart surgery, and some months later (reported in other papers); thematic data analysis; and research reports on how different professions contribute to children's informed decisions for heart surgery. RESULTS: The medical, ethics and English legal literature tend to assume legal minors cannot refuse major recommended treatment, and cannot consent until they are 12 years or older. Little is said about informing pre-competent children. If children resist, some anaesthetists rely on sedation and distraction, and avoid much informed discussion, aiming to reduce peri-operative anxiety. However, interviewees reported informing young children, and respecting their consent or refusal before elective surgery. They may delay elective surgery and provide further information and support, aiming to reduce fear and promote trust. Six years of age was commonly cited as the threshold for respecting consent to heart transplantation. CONCLUSION: Differing views about younger children's competence, anxiety and best interests support different reactions to children's consent and refusal before elective heart surgery. This paper reports the zero-restraint policy followed for over a decade in at least one leading surgery centre. The related law and literature need to be updated, to take more account of evidence of actual practice.

Children's informed signified and voluntary consent to heart surgery: Professionals' practical perspectives.

BACKGROUND: The law and literature about children's consent generally assume that patients aged under-18 cannot consent until around 12 years, and cannot refuse recommended surgery. Children deemed pre-competent do not have automatic rights to information or to protection from unwanted interventions. However, the observed practitioners tend to inform young children s, respect their consent or refusal, and help them to "want" to have the surgery. Refusal of heart transplantation by 6-year-olds is accepted. RESEARCH QUESTION: What are possible reasons to explain the differences between theories and practices about the ages when children begin to be informed about elective heart surgery, and when their consent or refusal begins to be respected? RESEARCH DESIGN, PARTICIPANTS AND CONTEXT: Research methods included reviews of related healthcare, law and ethics literature; observations and conversations with staff and families in two London hospitals; audio-recorded semi-structured interviews with a purposive sample of 45 healthcare professionals and related experts; interviews and a survey with parents and children aged 6- to 15-years having elective surgery (not reported in this paper); meetings with an interdisciplinary advisory group; thematic analysis of qualitative data and co-authorship of papers with participants. ETHICAL CONSIDERATIONS: Approval was granted by four research ethics committees/authorities. All interviewees gave their informed written consent. FINDINGS: Interviewees explained their views and experiences about children's ages of competence to understand and consent or refuse, analysed by their differing emphases on informed, signified or voluntary consent. DISCUSSION: Differing views about children's competence to understand and consent are associated with emphases on consent as an intellectual, practical and/or emotional process. Conclusion: Greater respect for children's practical signified, emotional voluntary and intellectual informed consent can increase respectful understanding of children's consent. Nurses play a vital part in children's practitioner-patient relationships and physical care and therefore in all three elements of consent.

Competent children? Minors' consent to health care treatment and research.

This paper concentrates on controversies about children's consent, and reviews how children's changing status as competent decision makers about healthcare and research has gradually gained greater respect. Criteria for competence have moved from age towards individual children's experience and understanding. Uncertain and shifting concepts of competence and its identification with adulthood and childhood are examined, together with levels of decision-making and models for assessing children's competence. Risks and uncertainties, methods of calculating the frequency and severity of risks, the concept of 'therapeutic research' and problems of expanding consent beyond its remit are considered. The paper ends by considering how strengths and limitations in children's status and capacities to consent can be mirrored in researchers' and practitioners' own status and capacities. Examples are drawn from empirical research studies about decision-making in healthcare and research involving children in the UK.

Parents' experiences of sharing neonatal information and decisions: consent, cost and risk.

This paper is about the care of babies with confirmed or potential neurological problems in neonatal intensive care units. Drawing on recent ethnographic research, the paper considers parents' experiences of sharing information and decisions with neonatal staff, and approaches that support or restrict parents' involvement. There are growing medico-legal pressures on practitioners to inform parents and involve them in their babies' care. Data are drawn from observations in four neonatal units in southern England, and interviews with the parents of 80 babies and with 40 senior staff. The paper compares standards set by recent guidance, with parents' views about their share in decision-making, their first meetings with their babies, 'minor' decision-making, the different neonatal units, being a helpless observer and missed opportunities. Parents' standards for informed decisions are summarised, with their reported views about two-way decision-making, and their practical need to know. Whereas doctors emphasise distancing aspects of the consent process, parents tend to value 'drawing together' aspects.

Children's competence to consent to medical treatment.

As a study involving diabetes care demonstrates, children sometimes have a much more sophisticated capacity for taking charge of their own health care decisions than is usually recognized in bioethics. Protecting these children from their disease means involving them in their treatment as much as possible, helping them to understand it and take responsibility for it so that they can navigate the multitude of daily decisions that become part of the diabetes medical regimen.

Complications within consent.

The consent process is intended to protect patients, prevent complaint and litigation, and help practitioners to be accountable, to justify their decisions, and to inform and involve patients/parents in their health care. Medico-legal guidance poses uncertainties and dilemmas that can undermine these aims and deter some practitioners from informing and involving patients/parents in decision making. Greater recognition of contradictions and limitations in the guidance on consent could assist practitioners and patients/parents in their shared decision making.

The new genetics: promise or threat to children?

What will treating children as consumer artefacts, to be changed genetically at parental or medical whim, do to our understanding of human existence, of human identity, or of intergenerational obligations? These issues are explored in a paper based on a lecture given recently at a New Zealand conference.

What constitutes 'balanced' information in the practitioners' portrayals of Down's syndrome?

OBJECTIVE: to explore the information that practitioners perceive they give to pregnant women about the condition of Down's syndrome, and to look at some influences on the construction of this information. DESIGN: qualitative study incorporating semi-structured interviews with practitioners followed by multidisciplinary discussion groups led by a health-care ethicist. SETTING: inner-city teaching hospital and district general hospital situated in South East England. PARTICIPANTS: seventy practitioners whose work relates directly or indirectly to perinatal care. FINDINGS: although women were seen to vary in their knowledge about Down's syndrome, practitioners felt that many did not understand the basic features of the condition. Practitioners themselves rarely had any practical experience or knowledge of people with Down's syndrome. This led to a reliance on 'medical textbook' information, which tends to focus primarily on the potential problems of the condition. Due to lack of time, practitioners also relied on the use of information leaflets. However, much more space in these was devoted to explaining the actual screening process rather than the condition, and the very brief descriptions of Down's syndrome lacked any positive statements. IMPLICATIONS FOR PRACTICE: informed choice in antenatal screening must be based on balanced information about 'screened for' conditions. Education about conditions set within a broader context of disability awareness could help to avoid the 'checklist' type approach used by many respondents. Practitioners and maternity units as a whole should reflect critically on the origins of the information they are conveying to prospective parents about what it means to live with Down's syndrome. Midwives and others involved in prenatal screening need to be aware of their own feelings about screening and disability. Midwives should also be involved in the planning of any future antenatal screening developments within their workplaces, and it is essential that they prospectively highlight factors such as lack of time and knowledge, which they feel inhibits their ability to facilitate informed choice. Research is needed which explores the consequences of allocating substantial resources into ensuring that women are fully informed about an increasingly complex antenatal screening process.

Examining ethics in practice: health service professionals' evaluations of in-hospital ethics seminars.

This article reviews practitioners' evaluations of in-hospital ethics seminars. A qualitative study included 11 innovative in-hospital ethics seminars, preceded and followed by interviews with most participants. The settings were obstetric, neonatal and haematology units in a teaching hospital and a district general hospital in England. Fifty-six health service staff in obstetric, neonatal, haematology, and related community and management services participated; 12 attended two seminars, giving a total of 68 attendances and 59 follow-up evaluation interviews. The 11 seminars facilitated by an ethicist addressed the key local concerns of staff about the social and ethical consequences of advances in genetics and their impact on professional policies and practice. Seminar agendas were drawn from prior interviews with 70 staff members. During evaluation interviews, participants commented on general aspects that they had enjoyed, how the sessions could be improved, timing, the mix of participants, the quality of the facilitation, whether sessions should be more challenging, after-effects of sessions, and interest in attending seminars and contacting the ethicist in future. Participants valued the increased interprofessional understanding and coherent discussion of many pressing issues that addressed important though seldom discussed ethical questions. The seminars worked well in the different hospitals and specialties.

Too many choices? Hospital and community staff reflect on the future of prenatal screening.

Promoting informed choice is commonly recognised as the chief purpose and benefit of prenatal screening, its very presence being viewed as a key way in which the process can be distanced from eugenics. As the number of conditions and features which can potentially be screened for rises, dilemmas about how to achieve informed choice can only increase. Seventy hospital and community staff working in or attached to two English hospitals were interviewed individually on topics which included their views on genetic developments and moral beliefs and values, and how these affected their daily work. The majority then took part in small discussion groups led by an ethicist. The research identified a paradox. On the one hand, participants recognised the centrality of informed choice to prenatal screening, although they had many doubts about whether it could be achieved. On the other hand, most saw the expansion of screening, which might further compromise informed choice, as an inevitable and inexorable process over which they had little, if any, control. This was despite the fact that many of them decided, managed or implemented prenatal screening policies within their hospitals. The paper explores the factors which staff themselves identified as responsible for this perceived inevitable expansion. It then discusses more generally how the expansion of medical technologies can appear as inexorable to those involved. Finally, the paper calls for more inclusive, integrated and collaborative debate and research around the whole area of prenatal screening. This is to ensure that as far as possible, the wider consequences and implications of any proposed expansion to prenatal screening-both the promises and the potential side-effects-are debated ahead of their implementation, and also to help ensure that public policy represents and serves contemporary society.

Dilemmas encountered by health practitioners offering nuchal translucency screening: a qualitative case study.

OBJECTIVE: To explore dilemmas experienced by practitioners involved in routine prenatal nuchal translucency (NT) screening. DESIGN: Qualitative study incorporating multidisciplinary practitioner discussion groups led by a health care ethicist. SETTING: Inner-city teaching hospital with fetal medicine unit. PARTICIPANTS: Thirty-two practitioners whose work relates directly or indirectly to perinatal care. RESULTS: Practitioners identified a number of dilemmas, many of which centred on the tension between pregnancy being seen as a normal or a 'risky' time. Practitioners and women were perceived to have contrasting reasons for screening, with women welcoming the opportunity to 'see' their baby on the ultrasound scan, whilst practitioners were screening for abnormalities. These differing agendas led to various dilemmas particularly in relation to information giving, performing scans incorporating NT screening and promoting individual client choice. CONCLUSIONS: Plans to introduce routine NT screening need careful prospective consideration of the potential implications for both providers and users of the service. The discussion groups also identified the need for training in the complex communication skills required and an awareness of the related ethical dilemmas, plus the need for increased time and resources to enable practitioners to promote informed choice.

Is nondirectiveness possible within the context of antenatal screening and testing?

Partly in order to dissociate itself from eugenics, genetic counselling values the principle of nondirectiveness as a key feature. Recent reports have upheld the importance of this approach, treating it unproblematically. However, doubts have been expressed about whether nondirective counselling is possible or indeed, desirable. Changes in organisational aspects of antenatal screening delivery in the UK have meant that genetic counselling is now being carried out by a variety of practitioners other than counsellors and specialists. These are often practitioners such as obstetricians and midwives who, in many other aspects of their work do not practise in a nondirective way. This paper explores some of the difficulties health practitioners encountered when attempting to work nondirectively. Reasons given by practitioners for not following this approach fell into categories, which in turn formed a continuum. Categories along the continuum ranged from acting directively at the request of women, through to deciding for women, either covertly or overtly, in their "best interests". It appears that for practitioners, the boundary between choice and coercion is not a clearcut one, and visualising it instead as a continuum may make it easier to see how slippage between choice and coercion can occur. The paper highlights the dilemmas which a variety of practitioners are dealing with in their daily work, in the hope of encouraging debate about these complex clinical and ethical issues.