The Patients Changing Things Together (PATCHATT) programme supports individuals with a life-limiting illness to lead a change that matters to them. Individuals join a facilitated online peer support group to identify an issue they feel strongly about, plan for change and take action to bring that change about. The programme is developed and guided by a Programme Advisory Group with clinical and lay membership. This article charts the trialling of the patients changing thing together ethics pack, designed to support all (...) members of the Programme Advisory Group in taking an equal role in ethical decision-making as they guide the programme's ongoing development. As a trial of its efficacy, the pack was used by the author to consider an ethical dilemma at the heart of the development of the Patients Changing Things Together programme, that is, is it ethical to offer a community palliative care programme which has the potential to bring participants harm as well as good? The author reports a strong ethical argument for offering this programme, while concluding the need for the Programme Advisory Group to make the final decision, using the Patients Changing Things Together ethics pack to consider the results of the evaluation of the programme's pilot. The article concludes that this pack provides an effective tool to guide ethical novices through the ethical complexities of developing a community-based palliative care intervention programme. It raises the issue that such inclusivity is achieved through a normative decision-making process which denies the fluidity and creativity which may inform the best ethical decision-making practice. (shrink)

What is good bioethics? Addressing this question is key for reinforcing and developing the field. In particular, a discussion of potential quality criteria can heighten awareness and contribute to the quality of bioethics publications. Accordingly, the objective of this article is threefold: first, we want to identify a set of criteria for quality in bioethics. Second, we want to illustrate the added value of a novel method: in-depth analysis of a single article with the aim of deriving quality criteria. The (...) third and ultimate goal is to stimulate a broad and vivid debate on goodness in bioethics. An initial literature search reveals a range of diverse quality criteria. In order to expand on the realm of such quality criteria, we perform an in-depth analysis of an article that is acclaimed for being exemplary. The analysis results in eleven specific quality criteria for good bioethics in three categories: argumentative, empirical, and dialectic. Although we do not claim that the identified criteria are universal or absolute, we argue that they are fruitful for fueling a continuous constitutive debate on what is “good bioethics.” Identifying, debating, refining, and applying such criteria is an important part of defining and improving bioethics. (shrink)

Given that biases can distort bioethics work, it has received surprisingly little and fragmented attention compared to in other fields of research. This article provides an overview of potentially relevant biases in bioethics, such as cognitive biases, affective biases, imperatives, and moral biases. Special attention is given to moral biases, which are discussed in terms of (1) Framings, (2) Moral theory bias, (3) Analysis bias, (4) Argumentation bias, and (5) Decision bias. While the overview is not exhaustive and the taxonomy (...) by no means is absolute, it provides initial guidance with respect to assessing the relevance of various biases for specific kinds of bioethics work. One reason why we should identify and address biases in bioethics is that it can help us assess and improve the quality of bioethics work. (shrink)

This paper investigates the medical law and ethics learning needs of Foundation doctors by means of a national survey developed in association with key stakeholders including the General Medical Council and Health Education England. Four hundred sevnty-nine doctors completed the survey. The average self-reported level of preparation in MEL was 63%. When asked to rate how confident they felt in approaching three cases of increasing ethical complexity, more FYs were fully confident in the more complex cases than in the more (...) standard case. There was no apparent relationship with confidence and reported teaching at medical school. The less confident doctors were no more likely to ask for further teaching on the topic than the confident doctors. This suggests that FYs can be vulnerable when facing ethical decisions by being underprepared, not recognising their lack of ability to make a reasoned decision or by being overconfident. Educators need to be aware of this and provide practical MEL training based on trainee experiences and real-world ethics and challenge learners’ views. Given the complexities of many ethical decisions, preparedness should not be seen as the ability to make a difficult decision but rather a recognition that such cases are difficult, that doubt is permissible and the solution may well be beyond the relatively inexperienced doctor. Educators and supervisors should therefore be ensuring that this is clear to their trainees. This necessitates an environment in which questions can be asked and uncertainty raised with the expectation of a supportive response. (shrink)

Trust is frequently discussed with reference to the professional–patient relationship. However, trust is less explored in relation to the ways in which understanding of, and responses to, questions of ethics are discussed by both the “public” and “experts.” Public engagement activity in healthcare ethics may invoke “trust” in analysing a moral question or problem but less frequently conceives of trust as integral to “public engagement” itself. This paper explores the relationship between trust and the ways in which questions of healthcare (...) ethics are identified and negotiated by both “experts” and the public. Drawing on two examples from the author’s “public engagement” work—a radio programme for the British Broadcasting Corporation and work with a playwright and theatre—the paper interrogates the ways in which “public engagement” is often characterized. The author argues that the common approach to public engagement in questions of ethics is unhelpfully constrained by a systemic disposition which continues to privilege the professional or expert voice at the expense of meaningful exchange and dialogue. By creating space for novel interactions between the “expert” and the “public,” authentic engagement is achieved that enables not only the participants to flourish but also contributes to trust itself. (shrink)

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. (shrink)