Theorizing ethical questioning for applied theatre practice

Ethical Considerations Regarding Pregnancy in Chronic Kidney Disease

We are our own subjects. How our subjectivity becomes entangled in the lives of others is and has always been our topic. (Denzin 27)This article reflects on the process of disclosing the ethnographic self, particularly in relation to the use of e-mails and social networking sites, such as Facebook. Previous work has examined virtual ethnography as the main research method or its place within a mixed method approach (Orgad; Hine, Virtual Ethnography; Fay; Greschke). My focus lies on the voluntary and involuntary intertwining of physical ethnographic work (i.e. going to a specific location to immerse oneself in a culture) and the virtual relations formed with informants in the course of such fieldwork. Connecting with informants on Facebook has brought a new dimension to the active approach of impression management that is encouraged in traditional texts on ethnography and participant observation (Hammersley and Atkinson; Taylor and Bogdan; Ellen). Examples are drawn from my experience of three phases of geographically located fieldwork for my thesis on Spanish- and English-language media and the Cuban-American community in Miami, Florida, and from online “repercussions” of my physical presence in the field.In an ideal (research) world, the process of immersing oneself in a culture, studying and understanding its values, dynamics and symbolism is paired with professional and personal distance and reflexivity. Most of the time, the reality of fieldwork does not adhere to this ideal (Kleinman and Copp). Data collection does not take place in a void. On the contrary, it is a personal, emotional, embodied and challenging experience in which the researcher’s persona is highly involved: “If informants are people and have rights that affect ethical practice, ethnographers are also human and have identities that affect research practice” (Brewer 99).The researcher’s identity has a strong influence on the research process, but the same holds true the other way around. Ethnographic encounters have an effect on the ethnographer’s sense of identity or sense of self. The researcher’s identity, just like the informant’s, is ever-changing and in a constant process of negotiation that continues throughout the ethnographic experience. As Sarah Pink (47) points out, individuals not only position themselves and their identity in relation to others, but also in relation to objects and discourses (see also: Miller).Therefore the process of relating to the field does not end with physically removing oneself from it (Coffey). Dealing, relating and “coming to terms” with the field and those we encounter is much more complex. The assumption made that the researcher would not be influenced by this, meaning that the field has no impact whatsoever on the one collecting data, has been challenged severely, often by feminist scholars among others, over the past decades (Hey; Roberts; Berger).Establishing and positioning oneself and one’s role in the field can be a daunting process (Lindner). It can be informed by fears of acceptance, uncertainties about conventions not (fully) understood yet and the underlying dynamics one still hopes to uncover. The process of role(s) and identity negotiation of the researcher in the field goes on when writing the field, going through field notes and making sense of what we have experienced (Okely). So even though strict temporal and spatial boundaries might never have existed to the extent ethnography textbooks would have us believe, the use of e-mails and social networking sites have brought the field even closer to home. I have structured the following reflections on disclosing the ethnographic self in face-to-face conversations, that is, exposures made while being physically present in the field, and those taking place online. However, it is worth remembering that this is an artificial distinction as they are clearly interlinked and can overlap in time. Disclosure in Face-to-Face ConversationsWith establishing and negotiating one’s identity in the field and fieldwork relations comes the question of how much to disclose of oneself. How much should informants know about me? There are obvious ethical requirements: Every researcher should be clear about scope and aim of the research project, institutional affiliations, the way data will be stored and used (Mauthner et al.). But beyond that, how much of myself do I have to expose? What stands in the way of a straight-forward answer is the undefined nature of relationships of those we meet in the field: “Fieldwork relationships are at once professional and personal, yet not necessarily readily characterized as either”(Coffey 39).Arguably, there is not one right way to proceed, as it depends on the kind of field the researcher is finding herself in, her personality, role, identity and the type of relationship she wishes to establish with informants. The process of relationship-building to the field as a whole as constructed in the ethnographer’s mind and to individuals in the field is of course ongoing and very likely to evolve and change over time. This applies not only to the relationships built but also to the researcher’s sense of self and how he or she relates to those encountered in the field. It is partly in and through these encounters that the researcher’s understanding of self is influenced, shaped and negotiated on a continual basis. During three phases of fieldwork in 2006, 2007 and 2008 I interviewed over 40 Hispanic journalists, media executives and active members of the Cuban-American community in Miami, Florida. How much was I willing to disclose of myself during these encounters and subsequent e-mail exchanges? Should I correct informants when they wrongly assumed I was British because I was based at a British institution? Do they need to know why I have chosen to research this particular topic and them as a group, why I was based at a Scottish university and what brought me to the U.K. in the first place? The answers were no secrets, but neither was I comfortable to share them with all informants I met in the field. Gender and age-related dynamics came into play here with the majority of interviewees being male and significantly older than me (Easterday). At times, I was uneasy when it came to talking about myself. While I defined the majority of my initial relations as mostly, though not entirely, professional, some interviewees did have a different take on this. In particular, I felt that one interviewee who after the interview started asking me personal questions about my move to Scotland, clearly overstepped an invisible line, although it would have been perfectly alright from my perspective to ask him questions similar, though different in tone, within the context of an interview. A further aspect of disclosure within the context of ethnographic work is the open discussion of the research process with informants. Although this can be very fruitful, it can also be source of scorn and end in closed doors, especially in the highly polarised field I was researching: Once interviews were finished, some interviewees would ask whom I had interviewed previously—maybe just out of interest, maybe to go on and suggest future interviewees. I had never considered in detail what kind of reactions interviewees might have by my naming of previous contacts because for one, reactions had so far been positive and secondly, all interviewees had some understanding of what research entails and that I would naturally want to speak to as many people and as many “sides” as possible. In one particular case, though, the interviewee showed clear disapproval of my talking to a journalist at a well-known Miami-based newspaper. At the time, I did not take this minor condemnation very seriously, but in retrospect it turned out that this interviewee could have been a valuable source for further information and contacts. It taught me that it is wise to hold my cards closer to my chest in such a sensitive environment. This does not mean, however, that secrecy and constant striving towards a neutral position is always the best way to proceed, nor a believable position to hold as Kloos (511) found out: “One of the clergymen in Eastern Flevoland asked me once: ‘Do you have any opinions of your own?’”Virtual Exposure and DisclosurePrevious studies underlined that relationships forged and maintained online mirror offline everyday-life contacts, interests, concerns and vice versa. (Castells; Miller and Slater) For ethnographers whose informants have ready Internet access, this can bring significant advantages as well as challenges. Contacting informants whom I had heard about but not yet met in person by e-mail proved an extremely useful approach. An e-mail allowed me to say a few words about myself and introduce my research project. If there was no response to the e-mail, I was much more comfortable to call the person at this stage—rather than before an e-mail had been sent. E-mails proved a very successful way in contacting informants, thanking people after the interview and exchanging further information that had been touched upon in conversation. What surprised me, however, was that e-mails were also used by interviewees to contact me months after I had been in touch with them and had physically left the field. On a couple of occasions, interviewees sent me information that they thought was essential for my research or, in fact, asked me to fill out a questionnaire and comment on matters relating to my research topic. My role in the field and my relation to informants had turned from researcher to research participant, or interviewee in this case.While e-mails offer a rather controlled environment when approaching informants, other information about the researcher might be more unpredictable and harder to control or manage. I sometimes found myself wondering what information about me informants would find when they Googled my name. How would they combine and make

Technological breakthroughs have fundamentally altered intellectual property (IP) research processes, introducing new tools and ways for assessing, protecting, and utilizing intellectual assets. This paper examines the multiple effects of emerging technologies such as artificial intelligence (AI), big data analytics, blockchain, and augmented reality (AR) on established intellectual property research paradigms. AI and machine learning techniques make it easier and more accurate for academics to locate relevant patents by automating procedures like patent analysis and classification. Big data analytics use massive databases to extract insights and patterns, allowing for text mining and natural language processing approaches in IP research. Blockchain technology enables secure and immutable ledgers for tracking and validating IP ownership, hence improving IP protection and enforcement. Furthermore, AR and VR technologies provide unique methods to view and simulate intellectual assets, promoting collaborative research environments. Despite its advantages, technology improvements provide issues such as data privacy concerns, algorithm bias, and ethical questions in IP rights enforcement. Looking ahead, authorities must address these issues to guarantee that technology is used responsibly and fairly in intellectual property research. Collaboration across academic, industrial, and government players will be critical in realizing the full potential of technology to foster innovation in the digital age

Professional competence is a necessary but insufficient representation of how an individual health-care professional should properly behave in relation to a patient. Medical ethics addresses the further question of the basis on which actions taken by professionals in the context of that relationship are morally right. Children are distinct from adults in ethically relevant ways. They lack autonomy, both in practice and in principle, and their interests are easily ignored or annexed to others. In practice, ethical questions in children are currently addressed using the ‘four-principles’ or by appealing to rights-based arguments. Behind both are ethical theories (particularly deontology, utilitarian consequentialism, and virtue ethics) that are important, but problematic, in children. This chapter reviews existing ways of looking at ethics in end-of-life care for children, considering three specific contemporary debates in medical ethics in children’s palliative care: the principle of double effect, euthanasia, and withholding or withdrawal of life-sustaining treatment.

How decisions are made and communication is handled are essential to ensuring a good outcome.In the case of Scardoni v Hawryluck,1 Mrs H was an 81-year-old woman with advanced Alzheimer disease, cardiovascular illness, and septic shock whose family and physician could not agree on goals for care, requiring that a legal decision be made regarding the level of care to be provided. Over time and after much discussion, the multidisciplinary team on the intensive care unit (ICU) reached a consensus that intensive care for Mrs H would not improve her condition. So it was decided that after Mrs H was stepped down to a general medical unit, should an infection or respiratory distress develop, she would not be returned to the ICU. The attending ICU physician informed the family that instead of ICU care, “the hospital would offer her palliative care: painkillers and sedatives to keep her comfortable while her afflictions took their course.”2 In this particular case, the patient’s family challenged the health care team’s recommendations and insisted that their mother be readmitted to the ICU so that aggressive life-sustaining treatment would continue.This case, although Canadian, is relevant to ICU settings throughout North America. The purpose of this discussion is not to provide an in-depth ethical analysis, but rather to use the case of Mrs H to characterize one type of health care situation that clinical ethicists could help facilitate. Medical recommendations such as those involved in the care of Mrs H are made to prevent the “revolving door” patient, who according to ICU teams will receive no medical benefit if returned to the ICU. Decisions not to readmit are euphemistically referred to by some ICU staff as the “one-way ticket out of ICU” or “celestial transfer.” Such language shared between colleagues reflects a coping strategy, a “gallows humor,” intended to manage difficult feelings like sadness, anger, grief, sympathy, or moral distress. Cases like that of Mrs H are of particular concern to critical care nursing. Research has indicated that moral distress, a significant contributing factor to burnout, is encountered by ICU nurses when the care they are providing to a patient is regarded as futile.3It is not uncommon for hospital-based clinical ethicists to receive a request for consultation when disputes regarding similar recommendations for care arise between substitute decision makers and the ICU treatment team. These cases can lead to moral distress because of commonly held opinions among team members that futile treatment is being provided. Although staff can provide many life-sustaining treatments to such a patient, ethical questions often arise during the patient’s stay in the ICU. What ought to happen when an ICU team decides that a patient should be transferred to a general medical unit to receive comfort measures only, with no readmission to the ICU? Although teams discuss the practical questions about what can be done, the ethical questions about what ought to be done are sometimes not as clear. The following discussion explores how clinical ethicists can provide valuable assistance with the kinds of ethical challenges these situations customarily present. Particular emphasis will be placed on working within a process-driven, interdisciplinary framework that maintains a communication-oriented approach to ethical decision making.Clinical ethics is a relatively new field, and the role and purpose of clinical ethicists can vary somewhat according to the particular health care setting. For the purpose of this discussion, the authors describe the knowledge, skills, and activities of clinical ethicists through their review of relevant literature as well as their own training and experiences as staff clinical ethicists at 2 acute care settings in Ontario, Canada.Greater legal clarity or legislative measures to specifically address conflicts that arise over withdrawal or withholding of treatment for terminally ill patients are required, according to at least one legal expert. Current Canadian law, according to this same scholar, leaves doctors, patients and their families in a “grey zone” as to who should have ultimate authority on such decisions.4 The daily reality in most North American ICUs is that this gray zone persists—for better or worse. Although hospitals attempt to provide guidelines for addressing conflicts such as the one involving Mrs H, it is the quality of communication and relationship within the interdisciplinary team and between the treating team and the patient’s family that has a marked influence on decision making.5–7 In most cases similar to this one, consensus about level of care is first achieved by the interdisciplinary team, and a subsequent agreement is reached between the treatment team and the patient’s substitute decision maker and family. However, when agreement cannot be reached because of irreconcilable notions pertaining to what constitutes benefit to the patient and what constitutes harm, the results can be uncertain, stressful, and most unsatisfactory for both the health professionals involved and the patient’s family. This combination of an unfortunate turn of events for the patient, sharing of bad news with family members, and the recommendation for care outside of the ICU is a juncture of decision making at which conflict can occur and ethical challenges are most apparent to members of the interdisciplinary team.8,9Much has been written about the difficulties in communication within the ICU and how this affects patient care. Considerable evidence indicates that communication between the ICU team, patients, and patients’ families can be inadequate, leading to conflict and a possible long-term effect on the patient’s family.6,8,10,11 In one study,8 46% of families who had a loved one die in the ICU reported conflict over decisions to withdraw or withhold life-support measures. These family members also reported conflict over the manner in which staff communicated with or behaved toward them. The authors of that study8 cited family members who felt pressured by staff to “hasten their loved one’s death because they placed a burden on valued resources.” The importance of communication between treatment teams and patients and patients’ families cannot be overstated. In addressing the difficulties and deficiencies that have been identified, 2 experts concluded, “communication with caregivers is consistently identified as the most important and least achieved factor in patient/family satisfaction surveys.”12Intensive care is primarily intended to provide maximum benefit to those patients who are likely to recover from their infirmity or trauma.13 When the interdisciplinary team is not clearly communicating ethical considerations as well as the criteria they are using to determine the effectiveness or success of the treatment plan, patients’ families may develop erroneous expectations that life-sustaining interventions will continue to be offered.6 At the same time as a loved one is receiving ICU care with a grim prognosis, families are struggling to come to terms with impending loss. Family functioning or experience in coping with loss,14 unrealistic expectations regarding health outcome, within a societal context of diverse religious or cultural beliefs, can markedly influence families’ decision making about end-of-life care. Such formidable contributing factors further emphasize that effective communication strategies, as well as an appropriate level of sensitivity, ought to be used in ICUs when dealing with patients’ families.11Team communication, in particular communication between disciplines, also has proven problematic in decisions about end-of-life care in the ICU. Critical care nurses have cited difficulties in communication and decision making within interdisciplinary ICU teams. Ferrand et al15 reported that 75% of the nursing staff who participated believed that “collaboration was inadequate during decision making” despite general agreement that such team collaboration is necessary and desired. In another study,16 about one-third of the ICU nurses who participated felt “excluded by physicians from patient care decisions and felt their exclusion to be a detriment to patient care.”In terms of the burdens carried in making decisions about end-of-life care, some evidence suggests that physicians and nurses experience equal burdens. Physicians experience the burdens associated with having to make these decisions, and nurses feel the burden of having to carry out care decisions made by someone else.17 Given the shared burdens that members of the interdisciplinary team face, as well as the reported difficulties in end-of-life care decision making in the ICU, ensuring effective communication is a key feature of high-quality patient care.7 The following discussion is intended to demonstrate how clinical ethicists can be supportive of such strategies for effective communication and decision making.Medical recommendations like those pertaining to the care of patients such as Mrs H are based on best-practice standards of care and are informed by ethical principles like beneficence, nonmaleficence, and autonomy. Continued life-sustaining support in situations where benefit is in question can be regarded as futile, a concept with inherent ethical challenges. As Weijer et al18 point out, the values inherent in medical futility arguments often confuse treatment considered ineffective and treatment that will be effective but will ultimately result in a controversial outcome such as permanent unconsciousness. A team’s decision to not readmit a patient for ICU care can be an attempt to address futility based on controversial outcomes that the team may perceive as causing more harm for the patient than good. Poignantly stated, “if the welfare of the patient is the whole purpose of providing treatment and if that treatment brings needless suffering, then the whole purpose of medicine is defeated.”19 Although the concept of futility in ICU care is a subject worthy of ethical debate, it will not be the focus of this discussion. Rather, the subject of this discussion is the role of clinical ethicists in helping decision makers address ethical considerations such as futility.The results of inadequate communication, misunderstandings, or disagreements arising from divergent views about what is beneficent and the institutional realities surrounding resource allocation can be seen in the moral distress and subsequent moral residue experienced by both the patient’s family members and the health care staff involved. Moral distress occurs when a person can identify the ethically appropriate course of action, but does not feel able to carry this action forward because of barriers that may include lack of resources, legal limits, institutional obstacles, or imbalances in power, for example. Effects of moral distress on an individual can include feelings of anger, frustration, anxiety, or depression.20 Moral residue can be encountered when “deeply held beliefs, values and principles” are set aside at the expense of one’s personal sense of integrity.21 For families of patients, moral residue can manifest in lifelong memories about difficult health care experiences.The experience of moral distress and moral residue are of particular importance to critical care nursing. Some evidence indicates a relationship between an ICU care nurse’s perception of providing futile care, inadequate communication about the care plan within the interdisciplinary team, and the incidence of moral distress, emotional exhaustion, and burnout.3,16,22 Cases like that of Mrs H can present these kinds of challenges to nurses providing care at the bedside. The discussion also highlights how clinical ethicists can assist interdisciplinary teams in addressing ethical challenges that can lead to moral distress.Finally, the ethical climate within our health care settings is shaped by the organizational values inherent in hospital policies, approaches to handling conflict, allocation of human and material resources, the daily-lived experience of staff providing care, and those to whom care is provided.23,24 Economic constraints, resource allocation difficulties, and staffing shortages contribute to the moral climate of health settings, the moral distress of staff, and burnout among health care providers.25,26In cases such as that of Mrs H, the ethical challenges are not just about treatment requests considered inadvisable but also about scarce resources like ventilator-equipped beds in ICU settings. In the minds of some families, the need for an ICU bed is the primary reason that palliative measures are now being recommended. When conflict surrounds decisions about level of care, it is the bedside ICU nurse who fields the questions, concerns, and emotions expressed by patients’ families.It is through such challenging decision making, in which no agreement is reached, that the moral climate is regrettably defined for all persons with a stake in the decision. However oppressive these disagreements feel to both health care professionals and patients’ family members, most often the disagreements, ironically, do not result from a lack of good intentions on either side of the debate. Rather, these circumstances reflect the complex ethical challenges that are inherent in contemporary health care settings. Clinical ethicists can be an important resource to health care teams, patients, and patients’ families in addressing these difficult challenges.Clinical ethicists who provide consultative services may be requested by the ICU team when conflicts such as the one surrounding the planning of Mrs H’s level of care arise. What are the characteristics, skills, and knowledge that make clinical ethicists a useful resource in helping to address conflict over decisions about level of care for stable but critically ill ICU patients?Clinical ethicists come from a diverse background of training: clinical and academic experiences that include but are not limited to medicine, nursing, social work, theology, philosophy, and anthropology. Most clinical ethicists have advanced academic degrees and/or training in clinical ethics. Despite this diversity in background, clinical ethicists engage in common functions: consultative services, research, education and the development of policies pertaining to patient care and organizational ethics.27–29Clinical ethicists are trained to view ethical problems within an interdisciplinary health care environment whose primary commitment should always be to provide the best patient care possible. Patient care and goals for care are best understood through the wishes, beliefs, and values of the patient and the patient’s family. The approach taken by clinical ethicists in providing consultation is to model interdisciplinary collaboration and effective communication with patients and their families, with the objective of enhancing ethical decision making.28–30In effect, clinical ethicists in cases such as the one involving Mrs H act as facilitators of communication and decision making about goals for care, while directing attention to the ethical considerations underlying such decisions. Generally, clinical ethicists can help clarify differences in the way ethical considerations such as sanctity or quality of life are valued on the basis of religious, personal, or cultural values. Some evidence suggests that ethics consultation generally has been useful in preventing or resolving conflicts, and in reducing the incidence of prolonged controversial treatment.31,32 Current trends in the training and education of clinical ethicists have emphasized skills, knowledge, and expertise better suited to provide ethics support in real time as dilemmas and conflict around decisions related to patient care unfold.28What is particularly important about the approach used by most clinical ethicists is the emphasis placed on fair and just processes for decisions of such importance and consequence in an ICU environment.In cases such as the one involving Mrs H, it is not just what decision ought to be made that is of interest to clinical ethicists, but if and why a particular decision is ethically defensible. If so, to whom is it ethically defensible? How ought discussions and conflicts be managed? These questions raise ethical concerns about justice, fairness, and a reasoned approach to decisions of such consequence. Ethical consideration must also be given to the moral climate, how people feel treated, and the concerns and opinions of key persons with a stake in the decision making, with overarching consideration given to trust in the process used to make such important decisions. Therefore clinical ethicists are as concerned with procedural fairness as they are with outcome when assisting with ethically challenging situations in health care settings.Principal aspects of procedural fairness are as follows: that the process for decision making be as transparent as possible to all involved; that concerns of key persons with a stake in the decision making be considered; that the reasons or rationale behind decisions can be understood and defended; that people responsible for decisions be held accountable; and that in the event disagreement occurs, decisions can be reviewed, taking into account the concerns of those who disagree.33 Process-driven approaches to decision making or to resolving conflict used by clinical ethicists are dependent on using frameworks to guide communication. Such frameworks for communication are not just ethically defensible; they have been shown empirically to be part of good practice standards in ICU settings.6,11,34 Lilly et al35(pS398) found that using a standardized framework for communication resulted in health care providers seeing decision making as a “process rather than as an event”—an attribute consistent with principles for ethical decision making.An example of such a framework to guide communication is described by Lautrette et al,34 who identify such attributes as timeliness, opportunities for the patient’s family to speak, use of appropriate and sensitive language, and ensuring that the setting is private and comfortable. In addition to these attributes, clinical ethicists would include discussion of the values in conflict and ethical obligations that underscore decision making.Frameworks for communication appear well supported in the literature anyway, so what makes the involvement of clinical ethicists of added benefit?Despite advances in implementing communication strategies in many settings, improvement in general is needed in managing communication, enhancing understanding, and meeting needs of ICU patients and their families.6,8,10,11 Furthermore, Sherwin36 believes that communication frameworks and hospital policies can be used coercively, to enforce a particular outcome, if those who lead these discussions or who adhere to policies are not reflecting on personal biases, institutional pressures, and ethical considerations.Clinical ethicists act as facilitators, helping to raise important ethical questions, model effective communication, and model ethical decision making by using teachable moments to heighten the awareness and understanding of the ethical considerations in each case. Within most health care settings, necessary and unavoidable imbalances in power are present between various persons who have a stake in the decision making. Clinical ethicists assist in discussing the values that underlie decisions of such importance, making these transparent to and understood by key involved parties. They model the principles of procedural fairness. Inherently challenging decisions about level of care, as in the case of Mrs H, are often met with challenging feelings and opinions, making fairness and ethical reflection more important than less to involved parties.Clinical ethicists advocate for policies and practices that reduce coercive consequences that can arise when members of the ICU treatment team, patients, or patients’ family members feel overruled or dismissed. In conducting an ethics consultation, the clinical ethicist leads discussions with the interdisciplinary team members about ethical considerations that contribute to moral distress, for example, the conflict in the way benefit and harm associated with a particular therapy or level of care are understood. In most instances, the clinical ethicist must ensure that concerns raised by members of the interdisciplinary team and concerns expressed by patients’ family members are shared and considered. This process is handled in an open and transparent manner. In creating an opportunity through the consultative process for the interdisciplinary team to address concerns, related to both areas of conflict and moral distress, clinical ethicists are also capitalizing on valuable teachable moments in which knowledge about ethics and decision making can be enhanced. As Kälvemark Sporrong et al37(p835) concluded, “Ethical competence is a key factor in preventing or reducing moral distress.”We have found that consultation on an individual case often helps treatment teams identify preventative strategies to reduce or avoid conflict and to engage in more timely discussion about ethics the next time a complex care situation arises. Such measures are necessary in creating a moral climate in which discussion about ethics in daily practice can be supported and thus reducing the effects or incidence of moral distress. The potential exists for all members of the interdisciplinary ICU team, including the most responsible physician, to be so engaged in ethical reflection and decision making on challenging cases. Clinical ethicists model skills of effective communication, ethical reflection, and decision making as well as principles of procedural fairness within the consultative process that they facilitate.We are not suggesting that effective communication, procedural fairness, ethical reflection, and decision making are deficient whenever clinical ethicists are not involved in such cases. In reality, complex and ethically challenging cases occur routinely in ICU settings, most often without the involvement of clinical ethicists. What is being proposed is that clinical ethicists should be seen as a valuable resource for addressing challenging cases in the ICU. Better understanding is needed about the role of clinical ethicists and the kinds of assistance they can provide.In most cases, the ICU team and patient’s family agree on recommendations that comfort measures be provided on a medical intermediate care unit or a palliative care unit for a stable but critically ill patient. However, as in the case of Mrs H, these decisions may be met with considerable emotion from the patient’s family and with differences of opinion about benefit and the appropriate level of care. We think that clinical ethicists can be a valuable resource when challenging cases arise. By providing consultation, clinical ethicists can model effective communication, ethical reflection, and decision making, while following principles of procedural fairness, all of which are key elements to upholding ethics in daily practice and are of particular importance when conflict occurs about level of care in the ICU.The following are practical considerations for critical care nurses:

Climate change requires urgent action. Aggressive actions toward carbon emissions reduction must remain the primary strategy for reversing and addressing climate change. However, increasingly the world is considering technology-based climate intervention approaches—often called climate engineering. There are major practical and ethical questions about the significant risks and potential trade-offs some of these approaches would bring and how they would be measured against the risks of our warming world. Recognizing the need for guiding principles in this fast-moving, dynamic space and building on AGU’s longstanding history of advancing and advocating for strong scientific ethics, AGU is facilitating the development of a draft Ethical Framework for Climate Intervention Research, Experimentation, and Deployment. The ethical framework will be released in 2024 and will serve as a resource to help governments, researchers, NGOs, and the private sector make responsible decisions when engaging in climate intervention research or policy. In 2023, the draft framework completed a rigorous three-month public comment period and consultation process to include more holistic input from other scientists and ethicists, as well as community voices, youth advocates, and many more. This presentation will highlight the ethical principles and how the science community can incorporate and advocate for ethics in climate intervention research.

A body of work has emerged in political philosophy which can be termed ‘the ethics of migration’. Within that literature, there has been an increased focus on issues of displacement and protection which reflects practical concerns in the wider world. However, that focus has been predominantly upon refugees and asylum seekers and the ethical questions and challenges raised by their needs for protection. In this paper I argue that this leaves out many other issues, such as disaster-related and development-related displacements. However, addressing this absence cannot be an act of ‘gap-filling’. Rather, political philosophers who wish to address this wider understanding of displacement in their work need to draw upon and learn from other fields, disciplines and perspectives in ways that may radically disrupt and reform how the ethics of protection should be approached. In this paper I take some preliminary steps in exploring what an ethical framework for displacement might look like, by providing some of the elements of a groundwork for this project.

Background and aimPatient and public involvement (PPI) has potential to enhance health‐care research and is increasingly an expectation, particularly for many funding bodies. However, PPI can be tokenistic, which may limit this potential. Furthermore, few studies report PPI processes and impact, particularly in doctoral research studies, which are seldom reported in peer‐reviewed papers. The aim of this paper was to explore the impact of PPI on two health‐related doctoral research studies and identify how PPI could be used meaningfully at this level.MethodThe PPI processes included (a) involvement of two ‘Research Buddies’ who informed the research design and ensured implementation of a booklet intervention was feasible for family carers, (b) data analysis workshops with ‘Research Buddies’ to identify emerging themes from practitioner interviews, (c) public and stakeholder involvement who informed data collection tool design, and the design of an intervention to help people with obesity who attend weight loss groups.FindingsThe application of PPI enhanced both doctoral studies by assisting data analysis; problem solving and improving recruitment rates; improving the usability and appeal of data collection tools and interventions; and developing implementation strategies. Patient and public involvement was considered a rewarding experience for both researchers and PPI contributors.ConclusionThis paper demonstrates the value of PPI in doctoral research in relation to its impact on research processes, researchers and contributors. We also present recommendations on how PPI could be incorporated into future doctoral research, including resources required, planning PPI processes and involving PPI contributors in all stages of research.

Two familiar features of Ronald Dworkin's theory of adjudication generate a strange predicament. On the one hand, Dworkin maintains that most cases, including most hard cases, have answers. On the other hand, Dworkin argues that to discover that right answer, judges must avail themselves of moral considerations and moral argument: a party's rights follow from the principle which explains some significant portion of the prior institutional history and provides the best justification for that institutional history as a matter of political morality. But if moral considerations figure decisively in determining the answer to a legal dispute, then there can only be a single right answer as a matter of law if there is a single right answer to the question of political morality. Yet if morality is, as many seem to think, subjective in some sense, then there may be as many right answers as a matter of morality as there are judges and thus, consequently, no single right answer as a matter of law. Dworkin's response to this attack on the of morality asks us to distinguish between sensible, but defeasible, internal attacks on the objectivity of morality, from unintelligible, and irrelevant, external attacks on the objectivity of morality. The attacks, Dworkin argues, depend on the latter external perspective and, thus, reflect a misunderstanding about what is at stake in worrying about the objectivity of morality and, thus, in worrying about the objectivity of law. For the only type of objectivity that matters--namely, an internal objectivity--Dworkin's theory faces no predicament. Many have found Dworkin's internal/external distinction implausible or unclear. It may be usefully recast, I argue, as involving two competing paradigms of objectivity. On what I will call the Conception, objectivity in any domain must be understood on the model of the natural sciences, whose objects of study are objective in the sense of being mind-independent and causally efficacious (i.e., in making a causal difference to the course of experience). The Conception, by contrast, denies that the type of objectivity found in the natural sciences is the relevant type of objectivity to aspire to in all domains. We shall see, I think, that the grain of truth in what Dworkin is getting at in his external/internal distinction is really best understood as the difference between a Naturalistic versus a Non-Naturalistic Conception of Objectivity. Dworkin would have us, then, embrace the latter as the only type of objectivity at stake in assessing his theory of adjudication. Dworkin's version of Non-Naturalism bears a striking similarity to John McDowell's. I conclude by arguing, however, that neither version provides an adequate account of objectivity: they fail to explain basic intuitions about objectivity (even in ethics), as well as leaving us with a picture of the of ethics that would, in fact, be quite congenial to the non-cognitivism that both McDowell and Dworkin purport to have left behind. If that is right, then the original predicament remains a live one for Dworkin's theory.

In this thesis I analyse Felix Guattari's notion of schizoanalytic cartography in its theoretical and pragmatic development in Brazil. Cartographic practices have been developed extensively in Brazil since the 1980's, stemming from the theories and practice of Guattari and from French and Italian institutional analysis. Schizoanalytic cartographies are broadly developed as a tool to work through collective processes, as a device to analyse the collective agency of desire. Cartographies both map and create: they are realised by those who want to produce their own lives, while resisting oppression, and modes of capitalist subjectivation subsuming desire, affect and creativity itself. This thesis therefore traces schizoanalytic cartographies that devise new research processes and new propositions of organisation, subjectivation and institutionalization in Brazil. It explores key Guattarian terms ‘transversality’ and ‘micropolitics’, to analyse the practices of research processes in academia, such as Contemporary Subjectivity Research Group, and theatre groups working in transversal with mental health care, such as Ueinzz Theatre Company. I focus on how these processes work across institutions, theatre practices, the clinic and the social field. The thesis traces their work on “processual subjectivation” and “processual creativity”, proposing the “processual” as the core form of assemblage between subjects, modes of expression and institutions. This thesis argues against reductive notions of politically engaged art that pose oppositions between aesthetics and political practice, and against institutionally circumscribed definitions of practice-based research. Instead, the thesis proposes new frameworks and different genealogies of practice that transversalise and radicalise aesthetic production, connecting it in new ways to political grounds, outside of the agenda of larger cultural institutions, art worlds and markets. Through the examples of practices analysed, it argues that schizoanalytic cartographies bring “processual creativity” and the “production of subjectivity” into relation, and allow us to reassemble the fields of politics, aesthetics and knowledge production.

Technology research, design, and development is confronted with rapidly advancing digitalization in two respects: (1) digitally supported or enabled technologies need to be designed and developed, and (2) the respective R&D processes themselves will happen in a much more digitalized environment. Technology design generally must take into account the values involved and possible consequences of the development and use of the resulting products, services, and systems. In a digitalizing environment, the issue of values gains even more significance because more and more close and intimate interfaces between humans and technology have to be shaped. Designing human-machine interfaces is not only a functional issue but touches upon ethical questions such as the distribution of responsibility, but also upon anthropological issues related to the human self-image and ideas about future society as well. In the respective research, design, and development processes, value-laden issues such as control, privacy, empathy, responsibility, and accountability must be taken into account beyond technical issues of efficiency and reliability. The need for designing and shaping digital future technologies involving ethics and technology assessment will be demonstrated by three examples: future industrial production and the fields of self-driving cars and care robots. Value sensitive design and responsible research and innovation will be introduced as approaches to deal with these challenges.

At times decisions are made in the field of genetics that are presented as if the ethical debates have been adequately treated and so all moral considerations have been addressed, when the truth is very different. Nor is it always easy or desirable to separate the ethical, legal and social questions posed by new developments. The impact of developments in genetic science upon communities is one field of enquiry that envelops each of these areas. This paper explores the impact of genetics upon communities through focusing, in particular, upon certain developments in reproductive science. After introducing core issues and technologies, it discusses particular ethical concerns in relation to the ‘shadow’ of eugenics over such developments, before exploring the role of legislative debates and procedures in transforming social attitudes, values and hence norms. It then turns to consider debates concerning the ‘quality of life ethic’ now prevalent in healthcare, and moves on to discuss the issue of genetic discrimination – focusing, in particular, upon discrimination against disabled persons as a representative instance of the actual ethical and social/communitarian implications of the foregoing. It ends by highlighting the need to discern the ways in which the ethics of genetics is presently shaped and practised in order to discern better the particular social and communitarian implications of certain technological advances.

A Cautionary Tale of Performance Ethnography Brian Rusted (bio) Magdalena Kazubowski-Houston Staging Strife: Lessons from Performing Ethnography with Polish Roma Women Montreal and Kingston: McGill-Queen’s UP, 2010 Click for larger view View full resolution Book cover of Magdalena Kazubowski-Houston’s Staging Strife: Lessons from Performing Ethnography with Polish Roma Women (McGill-Queen’s University Press, 2010). Cover design by David LeBlanc Over the last decade, books such as Denzin’s Performance Ethnography, Madison’s Critical Ethnography, collections charting the performance studies field (Davis; Madison and Hamera), and those demonstrating its contributions to community, voice, and change (Kuppers; Pollock Remembering) have done much to facilitate the travel of engaged performance scholarship across qualitatively informed disciplines. Such endeavours have helped make links connecting ethnography, performance, and critical praxis more evident, and have demonstrated what Dwight Conquergood characterized as the shift in ethnography from a textual enterprise of reading cultural performances to a sensory and dialogical one where performance is embodied as epistemology and representational practice (190). Magdalena Kazubowski-Houston’s Staging Strife builds on this legacy with a case study of the challenges and accomplishments of collaborative, [End Page 91] performance scholarship. The International Congress of Qualitative Inquiry has recognized these accomplishments with its 2011 Qualitative Book Award, as did the Canadian Association of Theatre Research naming it as one of the recipients of the 2011 Ann Saddlemyer Award. Staging Strife is based on doctoral research conducted among Roma women in northern Poland starting in 2001. Kazubowski-Houston’s project was shaped by several objectives: she wanted to focus on ethnic and gendered violence experienced by Roma women in Poland; in addition to a dissertation, the research process was to produce a collaborative work of theatre derived, she hoped, “to break new ground” in ethnographic theatre “by employing physical movement as well as text as a mode of expression” (14); and given the engaged, critical perspective of performance ethnography, the project was “to effect change in the lives of Roma women” (Kazubowski-Houston 24). Kazubowski-Houston developed her sense of ethnographic theatre during her MFA. This approach, influenced by Johannes Fabian’s work in Zaire, allows the researcher to explore questions “by collaboratively developing a theatre performance with research participants” (Kazubowski-Houston 31). One of the project’s distinctive qualities, then, is that it encompasses the process of performance creation: the performance is not solely a representational work crafted after the fact from the research. Although Kazubowski-Houston identifies as an anthropologist, she brought extensive experience as a working theatre professional to the project. Her Polish background and longstanding interest in Poland’s modernist, theatrical avant-garde was complemented by her partner Shawn’s training in Grotowski’s acting methods at the University of Winnipeg. Together they formed Teatr Korzenie and derived their own brand of avant-garde practice, “Illustrative Performing Technique” (Kazubowski-Houston 34). Without such creative experience, it is unlikely that this project could have been proposed, completed, or turned into a theatre work or monograph. Staging Strife is accessible and engaging: it carries the reader effortlessly into the unfolding research process. This quality is due in part to a fluid movement between distinct verbal registers: a personal register that articulates both theoretical and experiential engagements shaping Kazubowski-Houston’s perspective; a more evocative, sensory register aimed at bringing the details of her subjects’ lives vividly before the reader; and a scripted, dramatic register representing particular moments of interaction that demonstrate central issues or turning points as the project unfolds. Kazubowski-Houston deploys these registers carefully making each methodological step clear to the reader while preserving the vitality of the temporal experience of doing the research. The writing enacts precepts of reflexive, interpretive autoethnographies that “reveal the presence of their authors, their personal and cultural background, their interactions with the research participants, and their thoughts and feelings during the research process” (Kazubowski-Houston 15). The book balances its major components through such reflexivity: Kazubowski-Houston’s roles as ex-patriot, doctoral researcher, and theatre professional; the Roma’s socially marginal experiences as they coped with day-to-day concerns about health, violence, income, and discrimination; and the art world politics of the local cultural centre and...

Using user-generated content from open-access platforms such as Reddit for research raises ethical questions and challenges. Research projects involving publicly available data can qualify for an exemption from human research ethics review. However, when the exemption is granted, some scholars move to the data collection phase without attending further to ethical considerations. This does not always result from negligence but can be driven by the lack of coherent guidelines or limitations of procedural ethics. Despite receiving an exemption from ethics review, researchers can still engage with ethical concerns throughout the project. This article argues that a “situated ethics approach” to researching publicly available online data, which pays attention to flexibility, reflexivity, and complexity of research ethics, should be applied to projects working with data from user-led platforms—Reddit or others. Using a reflexive process and drawing iteratively on learnings, this article describes and analyses a situated ethics framework applied to a case study of doctoral research about youth health discussions on Reddit. Through a focus on three key areas: digital context, users’ views, and project specificity, the framework inspired a set of ethical questions that can assist with applying situated ethics to other studies. This paper advocates that a “situated ethics approach” to researching publicly available online data can usefully advance debates and practice in research on user-led platforms with public data, such as Reddit.

‘In the midst of life, we are in death’from The Book of Common PrayerThe Palliative Care, or comfort care, movement in the USA is on the rise. Currently, palliative services are not integrated in an organized way throughout healthcare. If we accept the argument that palliative care is ethically desirable and that all patients are entitled to palliative services regardless of a terminal diagnosis, it follows that it needs to be integrated across a wide range of healthcare services. Ethical questions regarding palliative care and well-known ethical frameworks are discussed and an argument is made for integrating palliative healthcare services throughout the healthcare system and not simply at the end of life. Complementary and alternative medicine (CAM) therapies are discussed as useful and necessary components of palliative care. If we as a society look beyond separating cures and palliation, we will come closer to incorporating compassionate care throughout the disease process.