This chapter contains sections titled: Introduction Conceptual Issues Decision Issues Conclusion References Further reading.

Despite increased calls for hospital ethics committees to serve as default decision-makers about life-sustaining treatment for unrepresented patients who lack decision-making capacity or a surrogate decision-maker and whose wishes regarding medical care are not known, little is known about how committees currently function in these cases. This was a retrospective cohort study of all ethics committee consultations involving decision-making about LST for unrepresented patients at a large academic hospital from 2007 to 2013. There were 310 ethics committee consultations, twenty-five of (...) which involved unrepresented patients. In thirteen cases, the ethics consultants evaluated a possible substitute decision-maker identified by social workers and/or case managers. In the remaining cases, the ethics consultants worked with the medical team to contact previous healthcare professionals to provide substituted judgement, found prior advance care planning documents, or identified the patient’s best interest as the decision-making standard. In the majority of cases, the final decision was to limit or withdraw LST or to change code status to Do Not Resuscitate/Do Not Intubate. Substitute decision-makers who had been evaluated through the ethics consultation process and who made the final decision alone were more likely to continue LST than cases in which physicians made the final decision. In our centre, the primary role of ethics consultants in decision-making for unrepresented patients is to identify appropriate decision-making standards. In the absence of other data suggesting that ethics committees, as currently constituted, are ready to serve as substitute decision-makers for unrepresented patients, caution is necessary before designating these committees as default decision-makers. (shrink)

Background: Pediatric guidelines recommend that children and adolescents participate in a developmentally appropriate way in end-of-life decision making. Shared decision making in pediatrics is unique because of the triadic relationship of patient, parents, and physician. The involvement of the patient may vary on a continuum from no involvement to being the sole decision maker. However, the effects of child participation have not been thoroughly studied. The aims of this literature review are to identify studies on end-of-life decision making in (...) pediatrics, to explore patient participation, and to assess the effects of such participation. Methods: Five databases—PubMed, PsycInfo, Medline, CINAHL, and Sociological Abstract—were searched for empirical studies on end-of-life decision making in pediatrics. Selected articles fulfilling the criteria were assessed for type of decision, participants’ characteristics, reports on participation of the minor patient, and outcome. Results: Fifty-seven articles on end-of-life decision making in pediatrics were identified. The majority of papers (n = 43, 75%) investigated parents’ and clinicians’ perspectives, while only 14 articles (25%) included perspectives of children and adolescents. Twenty-two articles (39%) reported some details on various forms of children's participation (e.g., receive information, plan care details, consulted before or after a decision was made). Positive (e.g., respect for patient's preferences) and negative (e.g., conflict due to diverging opinions) effects of children's participation in end-of-life decision making were reported. Conclusions: This systematic review highlights the need for research to identify factors that contribute to a favorable participation of minors in decision-making processes, as well as strategies to solve possible conflicts. More research should take into account the dynamics in the triadic process of decision making and emphasize children and adolescents’ perspectives. A better understanding of how to meaningfully involve children and adolescents in end-of-life decision making could facilitate the practice of patient participation in pediatrics. (shrink)

The best interest standard is the threshold most frequently employed by physicians and ethics consultants in challenging a parent’s refusal to provide consent for a child’s medical care. In this article, I will argue that the best interest standard has evolved to serve two different functions, and that these functions differ sufficiently that they require separate standards. While the best interest standard is appropriate for choosing among alternative treatment options for children, making recommendations to parents, and making decisions (...) on behalf of a child when the legal decision makers are either unable to make a decision or are in dispute, a different standard is required for deciding when to seek state interference with parental decision-making authority. I will suggest that the harm principle provides a more appropriate threshold for determining when to seek state intervention than the best interest standard. (shrink)

BackgroundDespite consensus about the importance of implementing shared decision-making (SDM) in clinical practice, this ideal is inconsistently enacted today. Evidence shows that SDM practices differ in the degree of involvement of patients or family members, or in the amount of medical information disclosed to patients in order to “share” meaningfully in treatment decisions. Little is known on which representations and moral justifications physicians hold when realizing SDM. This study explored physicians’ experiences of SDM in the management of paediatric (...) patients with prolonged disorders of consciousness (PDOC). Specifically, we focused on physicians’ SDM approaches, representations, and ethical justifications for engaging in SDM.MethodsWe used a qualitative approach to explore the SDM experiences of 13 ICU physicians, paediatricians, and neurologists based in Switzerland who have been or were involved in the care of paediatric patients living with PDOC. A semi-structured interview format was used and interviews were audio-recorded and transcribed. Data were analysed through thematic analysis.ResultsWe found that participants followed three main decision-making approaches: the “brakes” approach, characterized by maximized family’s decisional freedom, though conditional to physician’s judgment regarding the medical appropriateness of a treatment; the “orchestra director” approach, characterized by a multi-step decision-making process led by the main physician aimed at eliciting the voices of the care team members and of the family; and the “sunbeams” approach, characterized by a process oriented to reach consensus with family members through dialogue, where the virtues of the physician are key to guide the process. We also found that participants differed in the moral justifications sustaining each approach, citing the duty to respect parental autonomy, to invest in an ethics of care, and to employ physicians’ virtues to guide the decision-making process.ConclusionOur results show that physicians come to perform SDM in different ways, with several representations, and distinct ethical justifications. SDM training among health care providers should clarify the ductility of SDM and the several ethical motivations underpinning it, rather than insisting on the principle of respect for patient’s autonomy as its only moral foundation. (shrink)

BackgroundRelatives have no formal position in the practice of euthanasia and physician-assisted suicide (EAS) according to Dutch legislation. However, research shows that physicians often involve relatives in EAS decision-making. It remains unclear why physicians do (not) want to involve relatives. Therefore, we examined how many physicians in the Netherlands involve relatives in EAS decision-making and explored reasons for (not) involving relatives and what involvement entails.MethodsIn a mixed-methods study, 746 physicians (33% response rate) completed a questionnaire, and (...) 20 were interviewed. The questionnaire included two statements on relatives’ involvement in EAS decision-making. Descriptive statistics were used, and multivariable logistic regression analyses to explore characteristics associated with involving relatives. In subsequent interviews, we explored physicians’ views on involving relatives in EAS decision-making. Interviews were thematically analysed.ResultsThe majority of physicians want to know relatives’ opinions about an EAS request (80%); a smaller group also takes these opinions into account in EAS decision-making (35%). Physicians who had ever received an explicit EAS request were more likely to want to know opinions and clinical specialists and elderly care physicians were more likely to take these opinions into account. In interviews, physicians mentioned several reasons for involving relatives: e.g. to give relatives space and help them in their acceptance, to tailor support, to be able to perform EAS in harmony, and to mediate in case of conflicting views. Furthermore, physicians explained that relatives’ opinions can influence the decision-making process but cannot be a decisive factor. If relatives oppose the EAS request, physicians find the process more difficult and try to mediate between patients and relatives by investigating relatives’ objections and providing appropriate information. Reasons for not taking relatives’ opinions into account include not wanting to undermine patient autonomy and protecting relatives from a potential burdensome decision.ConclusionsAlthough physicians know that relatives have no formal role, involving relatives in EAS decision-making is common practice in the Netherlands. Physicians consider this important as relatives need to continue with their lives and may need bereavement support. Additionally, physicians want to perform EAS in harmony with everyone involved. However, relatives’ opinions are not decisive. (shrink)

This paper explores the relationship between teaching and consulting in clinical ethics teaching and the role of the ethics teacher in clinical decision-making. Three roles of the clinical ethics teacher are discussed and illustrated with examples from the authors' experience. Two models of the ethics consultant are contrasted, with an argument presented for the ethics consultant as decision facilitator. A concluding section points to some of the challenges of clinical ethics teaching.

Mr. M is an eighty-five-year-old who presented to the hospital with congestive heart failure exacerbation, pneumonia, altered mental status, and sepsis. A physician determines that he lacks capacity, and the team in the intensive care unit looks to the patient's daughter, Celia, as his surrogate decision-maker because she is named as an agent in his medical power of attorney form. While in the ICU, Mr. M suffers acute respiratory distress secondary to pneumonia and thus requires intubation. Celia accepts several (...) life-sustaining interventions, but she sporadically refuses other medically indicated therapies. Although providers explain the importance of the ICU insulin regimen for glucose control, she either refuses the insulin or requests a lower dose. The health care team believes that it is providing substandard care and that Celia's medical decisions are not in the patient's best interests, so they request an ethics consultation. When the clinical ethicist attempts to talk with Celia, she refuses to speak with him, saying flatly, “I am not interested in talking with you.” The clinical ethicist meets with Celia on a couple of occasions, but she consistently refuses to have a conversation with him. He wonders if the patient's surrogate decision-maker can refuse a clinical ethics consultation and is unsure what his next steps should be. (shrink)

For many children with complex medical conditions, decisions regarding their goals of care lie in the zone of parental discretion. That is, clinicians appropriately recognize that in many cases whether to prioritize quantity of life or quality of life is a deeply personal, values-laden decision best made by those who are most deeply invested in the outcome. Once a family has committed to a goal, however, there may be new or ongoing conflict between parents and clinicians regarding the specific (...) interventions provided or not provided in support of that goal. To what extent is it ethically permissible for a seriously ill child’s surrogate decision makers to reject individual interventions that support their desired goal of care? This question might be best described thus: is pediatric healthcare “prix fixe,” in which clinicians help parents decide the best of one or more set combinations (“menus”) of interventions, or is it “à la carte,” in which parents are free to accept or reject each individual intervention? We argue that the concept of a “prix fixe” approach should be discussed with families early in the development of the clinical relationship, as an essential facet of shared decision making. (shrink)

This article focuses on patients' participation in decision‐making in meetings with healthcare professionals in a healthcare system, based on neoliberal regulations and ideas. Drawing on two constructed empirical cases, primarily from the perspective of patients, this article analyses and discusses the clinical practice around decision‐making meetings within a Foucauldian perspective. Patients' participation in decision‐making can be seen as an offshoot of respect for patient autonomy. A treatment must be chosen, when patients consult physicians. From the perspective of patients, (...) there is a tendency for healthcare professionals to supply the patients with the information that they think are necessary for them to make their own decision. But patients do not always want to be a ‘customer’ in the healthcare system; they want to be a patient, consulting an expert for help and advice, which creates resistance to some parts of the decision‐making process. Both professionals and patients are subject to the structural frame of the medical field, formed of both neoliberal framework and medical logic. The decision‐making competence in relation to the choice of treatment is placed away from the professionals and seen as belonging to the patient. A ‘projectification’ of the patient occurs, whereby the patient becomes responsible for his/her choices in treatment and care and the professionals support him/her with knowledge, preferences, and alternative views, out of which he/she must make his/her own choices, and the responsibility for those choices now and in the future. At the same time, there is a tendency towards de‐professionalization. In that light, participation of patients in decision‐making can be regarded as a tacit governmentality strategy that shapes the location of responsibility between individual and society, and independent patients and healthcare professionals, despite the basically desirable, appropriate, and necessary idea of involving patients in their own situations from a humanistic perspective. (shrink)

Unrepresented patients are some of the most vulnerable patients encountered in the healthcare system today. One of the challenges associated with healthcare for unrepresented patients is the lack of a standardized legal approach to decision making for this highly vulnerable population. Current statutory approaches vary widely without best practices or consensus guidelines. In 2016, Colorado passed a medical proxy law that established a process for the appointment of an independent physician to serve as a temporary proxy decision maker for (...) an unrepresented patient. Although this approach helps to identify a decision maker when no proxy is available, the appropriate standards for decision making remain uncertain. A peer-to-peer session at the Clinical Ethics Unconference in 2022 approached this conundrum with a focus on the best interests standard and the appropriate use of patients’ context in decision making. (shrink)

This book provides a multidisciplinary analysis of the potential conflict between a government’s duty to protect children and a parent’ right to raise children in a manner they see fit. Using philosophical, bioethical, and legal analysis, the author engages with key scholars in pediatric decision-making and individual and religious rights theory. Going beyond the parent-child dyad, the author is deeply concerned both with the inteests of the broader society and with the appropriate limits of government interference (...) in the private sphere. The text offers a balance of individual and population interests, maximizing liberty but safeguarding against harm. Bioethics and law professors will therefore be able to use this text for both a foundational overview as well as specific, subject-level analysis. Clinicians such as pediatricians and gynecologists, as well as policy-makers can use this text to achieve balance between these often competing claims. The book is written by a physician with practical and theoretical knowledge of the subject, and deep sympathy for the parental and family perspectives. As such, the book proposes a new way of evaluating parental and state interventions in children's’ healthcare: a refreshing approach and a useful addition to the literature. (shrink)

ObjectivesThe end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care.DesignWe conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis.SettingAcademic teaching hospitals in the United States and United Kingdom.ParticipantsWe interviewed 30 physician trainees. We purposefully sampled across three domains we expected to (...) be associated with individual ethics in order to elicit a diversity of ethical and experiential perspectives.ResultsSome trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient’s goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker.ConclusionsThis study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians’ ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care. (shrink)

The case of Twin B involves the decision to send a newborn to a less intensive Level 2 special care nursery (SCN) than to the Level 3 neonatal intensive care unit (NICU) that is considered optimal by the physician. The physician’s acceptance of the transfer is against the child’s best interest and is due to parental convenience. In analyzing the case, we reject the best interest standard. Our rejection is partly supported by the views of Douglas Diekema, John Hardwig, and (...) Lannie Ross. Instead of the best interest standard, we offer and defend an approach we base on a microeconomic analysis of externalities, such as those involved with automobile emissions. This extends our previously presented general microeconomic approach to patient decision-making. It provides a clearer way to evaluate situations, like those of Twin B, in which burdens faced by family members may be used to determine the appropriate level of treatment for a decisionally incapable patient. (shrink)

Background: Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. Methods: This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 (...) sites in Canada (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research. Results: Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01). Conclusions: AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials. (shrink)

Next SectionBackground: Physicians face ethical difficulties daily, yet they seek ethics consultation infrequently. To date, no systematic data have been collected on the strategies they use to resolve such difficulties when they do so without the help of ethics consultation. Thus, our understanding of ethical decision making in day to day medical practice is poor. We report findings from the qualitative analysis of 310 ethically difficult situations described to us by physicians who encountered them in their (...) practice. When facing such situations, the physicians sought to avoid conflict, obtain assistance, and protect the integrity of their conscience and reputation, as well as the integrity of the group of people who participated in the decisions. These goals could conflict with each other, or with ethical goals, in problematic ways. Being aware of these potentially conflicting goals may help physicians to resolve ethical difficulties more effectively. This awareness should also contribute to informing the practice of ethics consultation. Objective: To identify strategies used by physicians in dealing with ethical difficulties in their practice. Design, setting, and participants: National survey of internists, oncologists, and intensive care specialists by computer assisted telephone interviews (n = 344, response rate = 64%). As part of this survey, we asked physicians to tell us about a recent ethical dilemma they had encountered in their medical practice. Transcripts of their open-ended responses were analysed using coding and analytical elements of the grounded theory approach. Main measurements: Strategies and approaches reported by respondents as part of their account of a recent ethical difficulty they had encountered in their practice. Results: When faced with ethical difficulties, the physicians avoided conflict and looked for assistance, which contributed to protecting, or attempting to protect, the integrity of their conscience and reputation, as well as the integrity of the group of people who participated in the decisions. These efforts sometimes reinforced ethical goals, such as following patients’ wishes or their best interests, but they sometimes competed with them. The goals of avoiding conflict, obtaining assistance, and protecting the respondent’s integrity and that of the group of decision makers could also compete with each other. Conclusion: In resolving ethical difficulties in medical practice, internists entertained competing goals that they did not always successfully achieve. Additionally, the means employed were not always the most likely to achieve those aims. Understanding these aspects of ethical decision making in medical practice is important both for physicians themselves as they struggle with ethical difficulties and for the ethics consultants who wish to help them in this process. (shrink)

Background: Little is known about what factors may contribute to the growth of a consultation service or how a practice may change or evolve across time. Methods: This study examines data collected from a busy ethics consultation service over a period of more than two decades. Results: We report a number of longitudinal findings that represent significant growth in the volume of ethics consultation requests from 19 in 1990 to 551 in 2013, as well as important changes (...) in the patient population for which ethics help is requested. The findings include (1) a steady growth in requests from primary care providers (e.g., physicians and nurses), as well as increases in ancillary services (e.g., social workers); (2) a decrease in length of stay (days) before ethics help is requested; (3) an increase in the reasons that individuals ask for help from ethics; (4) an upsurge in consults requests from areas outside the intensive care unit (ICU); (5) a decrease in patients that died during hospitalization (e.g., live discharges); and (6) growth in the numbers of patients lacking decision-making capacity. Conclusions: We believe the increases in consult requests reflect appropriate and necessary growth because recent consultations have also been associated with consultations requiring (7) additional interventions and (8) reasonably high time intensity scores. (shrink)

The question I investigate concerns the ethics of clinical ethics consultation. To begin, I reconstruct and critically assess a widespread understanding of clinical medical ethics, one most prominently advanced by Mark Siegler. That examination reveals an overtly political strategy designed to reinforce physician authority. Next, John La Puma's work is discussed. Arguably the most prominent of Siegler's students, and certainly the most prolific, La Puma appears attentive to the problems in Siegler's view regarding clinical judgment. I conclude, however, that (...) La Puma assumes a relatively flexible system of formal rules and more extensive informal codes which define the concepts and procedures of medical consultation and which he simply transcribes for ethics consultation. ;Albert Jonsen and Stephen Toulmin have apparently endorsed this medicalized strategy. They contend that the view of ethics advocated by these physicians represents a "new" casuistry consistent if not identical to their own theory. I show that the casuist method of clinical ethical decision making simply appropriates features of the diagnostic apparatus embedded in the political economy of the enterprise of medicine and makes the role of ethicist parasitic on that of the physician as expert. Their casuistry, I argue, merely serves as a means to reinforce the standardized apparatus of professional authority exercised in medical procedures and concepts. ;Finally, I sketch an alternative way to think about how experience with other persons informs ethical decision making. On the basis of an extensive and nuanced account of an ethics consultation, I argue that to consult as a clinical philosopher in any situation is, necessarily, to be focused on that individual situation for its own sake. Clinical philosophy, as a result, must be done by attending strictly to what appears as it appears: the issues, concerns, and questions expressed, in their own terms, by those individuals whose situation it is. (shrink)

Introduction: The Dutch Euthanasia Act states that euthanasia is not punishable if the attending physician acts in accordance with the statutory due care criteria. These criteria hold that: there should be a voluntary and well-considered request, the patient’s suffering should be unbearable and hopeless, the patient should be informed about their situation, there are no reasonable alternatives, an independent physician should be consulted, and the method should be medically and technically appropriate. This study investigates whether physicians experience (...) problems with these criteria in medical practice.Methods: In 2006, questionnaires were sent to a random, stratified sample of 2100 Dutch physicians . Physicians were asked about problems in their decision-making related to requests for euthanasia or assisted suicide after enforcement of the 2002 Euthanasia Act.Results: Of all physicians who had received a request for euthanasia or assisted suicide , 25% had experienced problems in the decision-making with regard to at least one of the criteria of due care. Physicians who had experienced problems mostly indicated to have had problems related to evaluating whether or not the patient’s suffering was unbearable and hopeless and whether or not the patient’s request was voluntary or well considered .Discussion: Physicians in The Netherlands most frequently reported problems related to aspects in which they have to evaluate the patient’s subjective perspective. However, it can be questioned whether placing emphasis on these subjective aspects is an adequate fulfilment of the duties imposed on physicians, as laid down in the Dutch Euthanasia Act. (shrink)

Since 2008 I have been closely following the conceptual/performance/video work of Daniel Peltz. Gently rendered through media installation, ethnographic, and performance strategies, Peltz’s work reverently and warmly engages the inner workings of social systems, leaving elegant rips and tears in any given socio/cultural quilt. He engages readymades (of social and media constructions) and uses what are identified as interruptionist/interventionist strategies to disrupt parts of an existing social system, thus allowing for something other to emerge. Like the stereoscope that requires two (...) identical images to create an illusion of a three-dimensional image, Peltz sometimes visualizes two separate elements to create an object or moment that requires space and depth to focus on its varied layers. They say your brain has to process and make meaningful sense out of all that visual information before it can accept the illusion. I say your brain has to do a similar thing when looking and seeing the divine, magical, and faithful (social) art making of Daniel Peltz. Daniel Peltz is Associate Professor of Film/Animation/Video at RISD. He divides his time between Rhode Island and Sweden and is currently at work on an exhibition at Botkyrka Konsthall, Stockholm opening February 2013 and a new project to be included in the IASKA: Spaced Biennial (Australia) in 2014. This interview took place on Skype and is part one of a two-part interview. Feliz Lucia Molina: Are you in Providence, RI? Daniel Peltz: I’m at my house in Providence. I’ve been back for six days teaching winter session at RISD and doing this workshop series—these investors’ drum circles with a group of wealth managers. a client of the firm, 2013, photo Shirin Adhami FLM: The wealth managers were all drumming together? DP: They were all drumming in response to the performance of their retirement portfolios. FLM: Is this part of the “Unrealized Gain/Loss” piece? DP: Yes, it’s part of a show I’m working on in Sweden. I can show you because it was just today. I’ll show you some of this. Lets see—share screen [click, click, click]. This is the room. I’ve been using the camera system that’s already installed in the conference rooms to record them. So the video is being recorded directly by the wealth management office’s tech staff. These are the people I worked with in the last workshop. This conference table is less wondrous. They’ve been learning to drum in response to their retirement portfolios. I started by bringing in my little bit of wealth for them to propose a management strategy, I came to the follow-up meeting with a counter proposal, which was this workshop. So they agreed to do this series of workshops instead of managing my wealth. FLM: Does everybody in the room manage your wealth? That’s kind of a lot of people. DP: That woman in the back there and Craig —they handle new client business. So when you come there with your wealth, they sit down with you and suggest to you how they would manage it. They’re very nice, responsible people. FLM: And where is this? DP: This is in Providence and the one I was showing you is in Waltham, where I was today. Then I’m going to Newport for the last one on Friday. So I will have done four of them. This is the group in Waltham that I just played with today. I played directly with the two groups in Providence and I’m working with an ethnomusicologist at Brown, Asha Tamarisa, who is facilitating the last two. She’s helped develop the workshop in terms of figuring out how to train a group to do this and thinking about the compositional challenges of working in response to retirement portfolio data. FLM: Screensharing helps me to figure out tiny bits here and there about the project. DP: I might even be able to play you a little of the audio I’ve also been working with a group of professional percussionists on what will become a quarterly public investors’ drum circle event. Their stuff was really nice, but I want you to hear what we sounded like in the workshops. They’ve all been recorded by the a/v system in the offices. We use a simple structure where the drummer investors interpret the sensation of gain or loss as embellishments to a base heartbeat rhythm. The group holds the heartbeat and, as each person experiences gain or loss, they embellish that rhythm. "Screensharing helps me to figure out tiny bits here and there about the project" FLM: Is the process all very spontaneous? DP: Its actually quite structured. We produce a custom stock ticker that shows the performance of their collective portfolios. In advance of the workshop each participant submits assets in their retirement portfolio. Then we make a stock ticker that shows the real-time performance of their assets so that they can respond to almost live data. FLM: Are they reading the stock ticker projected up on the screen in the room? Do people drum in correspondence to the visual live data of the performance of their assets? DP: Exactly. They’re looking at the stock ticker as opposed to each other, so it’s a slightly shifted drum circle. They’re looking at the ticker but they’re listening to each other—that’s what we’re practicing. For example, NVO—the price is 172.08 but it’s down -1.16 and as that moves across the screen, the person who’s retirement is invested in that asset starts to embellish when that arrow first appears, based on their experience of loss. They stop when it exits the screen and return to the heartbeat. You could have one ticker for each retirement portfolio, but the way the workshop is constructed is that we just isolate one asset from each person’s portfolio so that everyone in the group is represented in a single ticker. So they’re drumming and looking at the ticker, but they’re hearing each other experience gain and loss. We’ve removed direct visual engagement from the social structure of a drum circle but the oral engagement is still there. FLM: So they had their own sound interpretation of gain and loss? DP: Yeah and that part is quite spontaneous as you were saying. In some of the preparatory exercises we’ve been working to give the participants more strategies for interpreting the sensations of gain and loss. We’re trying to develop their capacity to embellish a heartbeat or base rhythm but I’m not invested in having a melodious result. I’m quite curious about what this kind of structure will result in without any desire for a particular result. FLM: For context, can you talk about the project you did a couple years ago in Bali, “Unrealized Gain/Loss” in relation to this current wealth management project? DP: The workshops I’ve been doing use a similar strategy to the other components in this project. It started in Indonesia on my sabbatical and I was really trying to understand where I was physically and where I was being on sabbatical—this kind of strange jubilee structure where every seventh year you’re supposed to renew your self. And it was around the time of the global financial crisis. I was on sabbatical for the global financial crisis. I remember watching my father, in particular, respond to the financial crisis by monitoring his retirement portfolio and trying to make sense of it. I realized on a visit to their home that he checked his retirement portfolio every single day and I was really struck by that because in some way our parents are mysteries to us as children, especially their moods. We know how important their moods are but we don’t know what governs them. And somehow it was like I’d figured it out, it’s the performance of the DOW! So I think there was something in that. Then I was in Indonesia and I had been drawn there by an interest in their highly ritualized Hindu culture, where so much of life is driven by a ceremonial calendar. I was interested in Bali as this predominantly Hindu pocket within a predominantly Islamic country and life there being organized by this ritual calendar functioning as a kind of resistance to the dominant global religion of free-market capitalism. So I started to explore that correlation between the ways in which this culture that I was living in was sort of “living for the afterlife” and this idea within certain segments of American society of “living for the afterwork life”. The idea that your wellbeing in the “afterwork life” is tied to forces that are unseen and largely beyond your control has strong similarities to many religious understandings of the universe. So I started to explore that and the crafts and materials that were around me were primarily Batik and percussion. Percussion is a huge part of daily life in Bali. These gamelan troupes were everywhere. And I also happened to be there for Nyepi, the day of silence, which is preceded by a very elaborate procession and construction of demonic statues. These were the things that were around me and I started studying Batik with one of the Batik artists there and also started a conversation with two master Batik artists, one who is American and her Indonesian husband. I developed these patterns that were based on symbols from the performance of my retirement portfolio and worked with the batik artists to produce two sarongs. d. peltz - 2012 In producing the designs, I treated the performance of my retirement portfolio since my arrival at RISD [7 years] as a significant interval and then I looked at the ways in which decisions are made within retirement portfolios as having an extension outwards from the individual assets that underlie the retirement portfolio, which are kind of like the base elements of the retirement world. Then there’s the allocation of your assets, which is a global way of understanding an individual according to typologies, which are often referred to in terms of risk—this notion of a ‘risk profile’. What type of ‘person’ you are is determined by your attitude towards risk, or potentiality, and I found that to be a really fascinating way of understanding the universe. I remember looking at the tabs in my retirement portfolio and finding this one for viewing ‘Unrealized Gain/Loss’ and that’s often how I work—is just going through the Cambridge Parking Code, for example, and finding this section of the code that was called ‘Crossing Non-Signalized Locations’ and just feeling “I can’t do any better than that,” you know? That’s what I was talking about in terms of ready-mades that exist in the social sphere. So I found that tab, actually, a long time ago, and I pulled it out of a journal when I was there [in Bali] working on these pieces and I wound up making these two sarongs and later on a series of porcelain vessels for holding one’s unrealized gains and losses. At the time, I knew that I wanted a performance to come out of them, but I wasn’t sure what it was. I was inspired very much by this sort of thing: Pulls out a TIAA-CREF brochure with a man in a suit seated at a table. This guy is probably an actor, and [the brochure] says “TIAA-Cref announces “Individual counseling sessions at the Rhode Island School of Design. Individual counseling sessions at no additional cost to you. You can discuss your personal financial situation with an experienced TIAA consultant on a confidential basis. We are available to help you discuss how to achieve your financial goals by investing in financial solutions such as mutual funds, brokerage, life insurance, and annuities...etc....What retirement benefits best fits your situation?” Often I encounter this and I think O.K., this is one way to prepare for the after-work life and it seems inadequate to me. But, I also find it really inspiring. I really like the visual language of it. I kind of want to be that man. I’d like to see if I could maybe buy his clothes. FLM: What it is about the man on the brochure that interests you? DP: He’s offering personalized objective advice and a detailed evaluation of everything you need to know and do. Who wouldn’t want that? But he’s also something of a contemporary priest or priestess, mediating between the unseen all-powerful universe of global capitalism and the common worker. So I started off developing Unrealized Gain/Loss directly from the charts that represent the performance of my retirement portfolio. Then I came home and I wanted to use those. I had this word in my journal “unrealized gain/loss vessel.” I had this notion of vessels that would contain unrealized gains and losses. That felt really important to me that they would have somewhere to go. I had been thinking a lot about altars and making offerings—that somehow this really fickle, massive, difficult-to-comprehend-universe of the financial world—that somehow it might be nice if you could making an offering to it. [In Bali] they made such beautiful elaborate offerings. So I studied offering making as well with one of the women there and she taught me some of the standard forms created by folding leaves and the significance of the floral arrangements. I started working in clay and then moved to porcelain and I made these unrealized gain/loss vessels. I made a few of them, they have holes on either side that you can’t get your fingers in. But something can go in there and something can go out of there. It’s a nice size for putting on an altar. Then I got this commission from Artists in Context who was interested in my doing something for this project “Artists Perspectives for the Nation” project. I proposed initiating these investors’ drum circles as a new public performance form. I’m interested in bringing together those two symbols—the symbol of the djembe and the drum circle. unrealized gain/loss vessel - d.peltz - 2012 FLM: I can imagine the public digital stock ticker performing like a soft fleeting stream of information, a kind of (meaningless) illusory comfort blanket. DP: In some way you have to understand its relevance outside of the obvious, right? Because the obvious is illogical. Nobody is actually using that data to day trade, for example. People aren’t sitting there with their computers watching the market data in Times Square or setting up an outdoor office and being like “OK it’s up 3 points or it’s up 1.56, trade! Ok now buy, Ok now sell!” That would be a kind of a nice performance, actually. But actual day traders would want more up to date data than that. To understand what that data is doing is really important. And that’s something I’ve realized—that I’m interested in a particular kind of data visualization, which is not about what data can tell people, but what data can tell people who are visualizing it. For example, in the Cambridge Project “Crossing Non-Signalized Locations” I was interested in the 10,000 excuses archive of data recording five years worth of excuses for why people thought they shouldn’t have received their parking ticket. I was not interested in making that excuse wall so that the public could see and understand this data. Inevitably the data will be seen by others but I was really interested in what the action of visualizing the data told those who were visualizing it. The parking attendants themselves were writing those excuses on the wall—I was interested in what that kind action of writing the excuses on the wall told them about the data. Similarly, I’m interested in designing a way to allow people to pass this data from the unseen universe of the market, through their own bodies, which happens through the merging of the drum and the stock ticker. I’m interested in those two also as symbols; the drum as this symbol of the earth, the body and a pagan counterculture, and the stock ticker referring to the ethereal world of global markets—bringing those two together and making them dependent. I’m often drawn to conceptual propositions that I become invested in testing in a sincere way—at first they often they sound humorous to others, but I have to remember that there is humor in them. I don’t sit around and laugh about these things. I stop finding them funny at all. I’m interested in the proposition that we could know something about the after-work life by drumming in response to our retirement portfolio. So then I become really interested in how to craft that into a viable performance form for myself and others. FLM: The aspect of using sound in “Unrealized Gain/Loss” as a way of embodying the information to the asset holder is really intriguing—using sound as a means of embodying the asset data. Was sound a medium that made sense to use immediately or were you considering other means of attempting to embody it? DP: Well I do use other mediums within the project like textile, ceramic, and batik patterns. I was first drawn to the history of Batik patterns as a socio-economic stratification system and the vessels as a way of embodying or manifesting this data of unrealized gain and loss. My first approach was to work with meditation actually—a meditation workshop with my colleagues. I was going to offer this “Unrealized Gain/Loss” workshop where you would explore the sensations of gain and loss by adapting the way yogi-nidra brings you into contact with your physical surroundings and stretches your perception. FLM: At Naropa University there are/were business & compassion workshops—a sort of mash-up of business and compassion and how compassion could be incorporated into a business model. This process and engagement of “embodying data” also has to do with “Participatory Democracy and the Future of Karaoke” you created at the DNC in Denver in 2008. DP: That kind of appropriation and instrumentalization of spiritual practice could be disturbing and thus compelling as a strategy. For various reasons, I’ve come to be drawn to both the form of a quarterly public performance and the established performance form of a drum circle. Its something I’ve seen myself do before, that is to mess up a really good functional social system like a drum circle or karaoke. I remember I was developing language for the karaoke project and started calling it “Participatory Democracy and the Future of Karaoke” and one of my assistants on the project, who’s an incredible artist, said, “but don’t you think the future of karaoke is guitar hero?” and I realized that maybe he thought I was trying to improve the form. I’m just trying to get people to have this shifted embodied experience, I need to craft the performance context so that they can do that. In the case of the karaoke project, for example, what did I need in order to be able to do this [a person to stand up in front of a bar and deliver a karaoke speech]? I realized that the body is very vulnerable so I built a podium so that the speaker can feel secure enough to do this, otherwise you couldn’t get to this state achieved by passing these speeches through the body. Then I was, like, well you need to be able to practice the lyrics because you don’t know all the “songs” by heart, which became an insert to the massive track books carried by most karaoke VJs. And then sometimes the crowd in the bar isn’t there with me, so I needed to extract the voice of the crowd cheering from the original venue and I needed the local audience to cheer if they wanted to. I’m interested in both where the form succeeds and fails. In particular, one of the most interesting things is this auditory gap between the space where you are, the reduced scale of applause in your own little bar, and this grand scale of applause at the convention center where the speech was originally delivered. FLM: How did the concept of “Participatory Democracy Karaoke” come about and why did you use karaoke as a means of engaging what was happening at the DNC in 2008? DP: I was looking at a lot of different readymade media infrastructures within the city at the time. I was interested in the emergency broadcast systems and I developed a proposal to repurpose that system and karaoke became an important symbol because it was this populist form that was already engaged in exploring the sensation of celebrity but also visualizing the gap between ourselves and those with more power and influence. So it had this readymade capacity to play with power and celebrity and I felt like the Obama presidential campaign, the first one in particular, had some very curious overlaps with this culture of celebrity. Obama of course rose to power partly based on his oratory abilities and I was interested in how karaoke as a vehicle was so adept at offering people all that was left of authentic expression in a political speech. Managing a politician and constructing their identity is such a developed practice that it becomes, kind of automatically, a metaphor for the way that our own identities are constructed. Of course the Obama campaign was very hip and savvy and deploying this notion of grassroots. It was really pioneering in its use of social media and this deployment of notions of populism. I was interested at that time in the capacity of karaoke to track speech patterns, precise tempos of anyone’s delivery, and that to me was a way of thinking about what might be left of the authentic self. I was interested in karaoke’s capacity to extract that authentic component and offer it to others. So not just to stand up and be them, but to [literally] pass their speech patterns through your own body. A long time ago, it started to strike me as odd that one would make media at all. It struck me as a kind of un-contemporary way of going about making art in an age of media overflow. That logic extended into my thinking on delivery devices and installation as well. Why would one buy a screen or even set one up when there are so many out there? And the way in which these media displays function in karaoke bars and bars in general is very interesting to me. I’m drawn to this passive consumption of media where your primary social interaction is with the bartender or a few other individuals but these screens are around you and your attention is shifting back and forth between these spaces. So much political rhetoric is spoken to a half-listening audience. I was interested in what was happening in the slippage and that karaoke was a kind of slippage amplifier. So if you put people in a bar and they are delivering a Kucinich speech and Kucinich comes up on a screen then your getting a sound bite of Kucinich and an image of Kucinich and your friend is talking to you— FLM: A kind of magic takes place in that incongruency between sound and image and the karaoke participant who’s relaying the speech-text at the same time. DP: Exactly and there’s some kind of truth in that experience of reality. FLM: Yeah, there’s something uncanny about seeing the body close-up like that as though it can’t lie to you in that moment or context. It’s a weird moment of luminous clarity. The work you’ve done and all of what you’re saying about karaoke is so very interesting to me. Growing up, my dad and uncles sang karaoke a lot (and still do) and being first-generation Filipino American is a different cultural subtext entirely. I’m also seeing it from the position of witnessing family members who are carriers of these stories and songs. And seeing them cherish these Tony Bennett, Frank Sinatra, Elvis Presley songs so much, I also see how their bodies are literal vessels of popular music that signifies something greater—it signifies their cultural and socioeconomic place in the world. The way that they cherish these American 1950s and 1960s pop songs is similar to having a certain kind of reverence for their spiritual faith or Catholicism. It’s a similar kind of care, focus, and attention exerted in karaoke and Catholicism—that these two structures and systems give something to focus on. Setsuko, Seiji and Hitoshi in Obama, Japan as Obama in Indiana — d. peltz — 2008 DP: Sure there something about the relationship we have to our candidate or the way we go about choosing a candidate, which is very similar to a deity or idol. I learned a lot about karaoke culture through this project. I’d never done karaoke. I’d never been interested in it as a form and then I travelled to Japan as part of the project when I made “Setsuko, Seiji and Hitoshi in Obama, Japan as Barack Obama in Indiana” and it was quite fascinating because my image of karaoke had always been this very public forum in a karaoke bar and then I discovered there’s this whole other world of karaoke where people even go on their own, they go and rent a room or cubicle and sing, or they go on a date—just the two of them go and sit in a room and do karaoke together. FLM: I’m interested in issues that take place within or as a result of specific karaoke culture(s). In the Philippines within the last several years there’s been occurring the “My Way Killings” phenomenon. Apparently baklas or gay men are employed by karaoke establishments to help “smooth over conflicts over karaoke singing”—these social forms of conduct, or lack thereof that arise out of the infrastructures of this social sport. In this one rural part of the Philippines there’s a village karaoke machine that the whole village shares—the Aeta indigenous people have an appointed “keeper” of the karaoke machine. I also see karaoke as a proxy to the confessional box in Catholicism where one goes to pour out their sins (minus the penance and redemption). The karaoke machine enables one to literally sing out whatever’s going on internally, but through highly saturated popular song lyrics. While karaoke is a public and social sport, it can also be a private one. Karaoke is a means of communion with each other. DP: Right, this preference for this kind of mediated communication. In Japan I was trying to organize people to work on this project and I was talking about throwing a party and they were like, well, we have to rent a karaoke machine because what else are we going to do? And I think its kind of serving that function of surrogacy—emotional surrogacy. FLM: And karaoke tools can be read as ritual tools—the magic mic that holds everything. There’s got to be some overlap at some point—between religious ceremony and devotion to the karaoke machine. DP: The way I designed the piece was so that it could slip right on top of the ready-made karaoke infrastructure. There was a flat-packed podium and it was made of a single sheet of plywood with no fasteners that slotted into itself. Those were sent out to a network of karaoke bars that I invited to become “karaoke convention centers.” The local VJs downloaded our custom-made, speech-extracted tracks that were designed to play on their existing equipment. In this sense the piece is a permanent installation. If you go to Denver today, some of the VJs still have the tracks in their library of offerings, the Ramones and Romney. It was this notion of re-purposing readymade infrastructure to create a distributable populist form. Obama was coming and the convention was in the Pepsi Center and 30,000 people were coming including 10,000 journalists. The impetus behind the larger art project that commissioned international artists to make works in Denver, was that local people weren’t going to have much access to this convention. It was like an invasion, the city was being descended upon, but if you lived a block away from the site, you had the same access as people in Zimbabwe&mash;30 second media bits excerpted from the speeches. So it seemed to me that the fundamental gesture was how do I take that signal, which was travelling out of the convention center, and create a local interruption? FLM: Is that what you mean by ‘intervention’? The term is frequently used to help describe your work. DP: It depends on the day. Around that karaoke project I had a conversation with Krzysztof Wodiczko and he was proposing that maybe rather than intervention, we should consider the word interruption. Because intervention is kind of an overused term in the field of art and it has militaristic and therapeutic associations outside of the art context. Fundamentally, the idea of intervening speaks to the readymade social world as your primary material. So it’s basically suggesting a kind of subtractive process, which gets back to this question: what is the role of the contemporary media artist in a world that’s so saturated with media? You can’t work additively in a saturated field. If you want to make a visible mark you have to work subtractively. That’s what intervention is about to me, just another way of saying “to work subtractively.” FLM: So the interventions or interruptions aren’t necessarily adding or subtracting, but are they putting orange cones there? What are they doing exactly? DP: I think you’re right about that, they’re not really subtracting. They’re adding to the scope of possibility. I’ve been thinking (with this exhibition I’m mounting next month) about the work as explorations and expansions of social possibility. Maybe it’s more insertion. I started calling the pieces ‘insertions’ that I was making in Rejmyre—a small town in Sweden where I’ve been working for six years now. My favorite site to install there is the tourist bureau. I started calling the video pieces that I made for the tourist bureau, video insertions. This idea that you’re inserting something into the readymade media infrastructure of the world resonates with me. Insertion leverages a context, creating a possibility that the inserted object might be naturalized in the process — that someone can encounter my video in Rejmyre as tourist information. And then all of a sudden tourist information can include some American guy prostrating through town and it can include really bad relationship advice. Maybe insertion is a better word. tourist information – d. peltz 2009-present  . (shrink)

BackgroundContemporary medical practice is complicated by many dilemmas requiring ethical sensitivity and moral reasoning.ObjectiveTo investigate physicians’ experience in ethical decision-making and their attitude towards ethics consultation.MethodsIn a cross-sectional survey 126 physicians representing the main clinics of Pleven University hospital were investigated by a self-administered questionnaire. The following variables were measured: occurrence, nature and ways of resolving ethical problems; physicians’ attitudes towards ethics consultation; physicians’ opinions on qualities and skills of an ethics consultant, and socio-demographic (...) characteristics. Data analysis included descriptive statistics, χ2 and t-test.ResultsResponse rate was 88.9% (n = 112). Men and women were equally represented (48.2%–51.8%). The sample consisted of experienced physicians: 42.9% had 11–20 years experience, and 33% had 21–30 years. According to 84.8% of respondents, ethical problems have been discussed in their specialty. Predominant dilemmas included relationships with patients and relatives (76.8%) and team work (67.6%). Over ¾ of physicians needed an advice in solving ethical problems. Ninety six percent responded positively to ethics consultation. They would mainly request it for resolving conflicts (72.5%), and in case of concern for the rightness of their decisions (52.7%). The image of an ethics consultant was built of clinical competence (70.9%), ability to deal with conflicts (59.1%), communication skills (58.2%), tolerance for different views (55.4%), and a special qualification in ethics (52.7%).ConclusionsThe study underlined that Pleven University hospital physicians face similar ethical dilemmas as their colleagues in other countries do. The expressed positive attitudes to ethics consultation should serve as a basis for further research and development of ethics consultation services. (shrink)

A patient-physician relationship provides a milieu for a patient to achieve healing, solace, and reintegration of personhood. A patient's primary physician assumes a leadership role in that regard, coordinating and facilitating a regimen of analysis and therapy. The quality, quantity, and rapidity of technological advancements in the delivery of medical care, render any individual physician incomplete in terms of his ability to provide total care. Consequently, a succession of professional and paraprofessional personnel must be involved to maximize the care rendered. (...) Nevertheless, a patient's primary physician must fulfill a leadership role as he coordinates consultations and interprets the data they provide, placing it in the appropriate situational context for his patient as part of a collective and mutual decision-making process. A patient's primary physician must be acknowledged to possess the power and authority to effect the care provided, as he must also accept the accountability, duty, obligation, and responsibility for the result of that care. By these means ambiguity and uncertainty are mitigated. (shrink)

Shared decision-making is a well-recognized model to guide decision-making in medical care. However, the shared decision-making concept can become exceedingly complex in adolescent patients with varying degrees of autonomy who have most of their medical decisions made by their parents or legal guardians. The complexity increases further in ethically difficult situations such as terminal illness. In contrast to the typical patient-physician dyad, shared decision-making in adolescents requires a decision-making triad that also includes the parents or guardians. The multifactorial nature (...) of these cases can overwhelm treatment teams, with minimal guidance on how to best approach the patient–parents–physician dynamic in an ethically appropriate manner. Estimated time left to live is the paramount ethical consideration for such cases with respect to shared decision-making. This paper offers a sliding scale to serve as a grounding reference for clinicians who care for terminally ill adolescents and hospital ethics committee members for initiating and guiding the ethical discussion for these patients. This paper also elucidates several other ethically salient features inherent to many of these cases, including quality of life, treatability of disease, cultural influences, among others. Yet how each of these variables is weighed is dependent upon the specific circumstances of each individual case. Ultimately, shared decision-making in adolescent patients with terminal illnesses must be a collaborative and ongoing process that thoughtfully weighs the values and ethical responsibilities of the patient, parents, and physician to ideally reconcile differences and come to a consensus on the best management option for each individual patient. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Bioethics ConsultationPat Milmoe McCarrick (bio)(John La Puma, M.D., from the Department of Medicine at Lutheran General Hospital in Chicago, contacted the National Reference Center for Bioethics Literature and suggested bioethics consultation as a topic for the Scope Note Series. He provided an extensive list of citations about ethics consultations collected by him and by David Schiedermayer, M.D., for their new book Ethics Consultation: A Practical Guide.)In Ethics (...) Consultation in Health Care, editors John Fletcher, Norman Quist, and Albert R. Jonsen (I, 1989) define ethics consultation as "the provision of specialized help in identifying, analyzing, and resolving ethical problems that arise in clinical care. In medical ethics the area of consultation has grown rapidly since 1978 when Edmund D. Pellegrino (II, 1978) noted, "we cannot separate technical-moral decisions from the philosophic principles we use to justify them. Medicine and ethics must be engaged with each other at every level."In 1980 Albert Jonsen raised the question of whether an ethicist could be a consultant and said that the ethicist as consultant is a casuist, one whose moral reasoning is based on a system of reasoning that is applied to particular cases. He describes historical casuistry in Western culture, comparing it to modern moral philosophy, and suggests that a "new casuistry seems timely" for ethics consultation (II, Jonsen 1980). By 1984 ethicist Ruth Purtilo recorded her thoughts following an ethics consultation. She raised questions about the ethicist's place on a hospital staff and how to make that role appropriate and beneficial to all concerned, saying that "the ethicist retreats after the consultation; under no circumstances would the outcome of an ethics consultation be that the ethicist became the primary care giver or assumed ongoing responsibility for the clinical management of a case" (II, Purtilo 1984). Nevertheless, in 1992 two physician-ethicists who had been called as ethics consultants for a patient who had requested that he be removed from his ventilator reported that they became the persons who turned off the ventilator and administered the drugs that eased his dying (II, Edwards and Tolle 1992).In recognition of the growing number of persons identifying themselves as [End Page 433] consultants, the Society for Bioethics Consultation was founded in October 1985 as a professional society of persons engaged in bioethics consultation. It encourages and supports consultation, assists in establishing clinical education programs, and raises funds for consultation education. Although the Society has no permanent office, the president (currently, George Kanoti in the Cleveland Clinic Foundation's Bioethics Department) conducts its work and plans an annual meeting.The Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) established new criteria concerning ethics in its 1992 Manual (III, JCAHO 1992) and in a special issue of QRB devoted to ethics consultation (I, Defining Quality 1992). These publications undoubtedly have contributed to the increased use of experts in medical ethics. The Manual notes that all organizations seeking accreditation should have some sort of "mechanism for the consideration of ethical issues arising in the care of patients and to provide education to care givers and patients on ethical issues in health care." A health care institution's eligibility for JCAHO accreditation, which is required for federal reimbursement, requires adherence to this specification (III, JCAHO 1992).The new International Directory of Bioethics Organizations provides an index of 129 different groups that indicated to the authors that they offer bioethics consultations. Of these, 83 are in the United States and 46 are in other countries. The ethics consultants included in the directory encompass a broad group of professionals who will assist patients, families, and primary care medical staff in finding solutions to ethical dilemmas resulting from use of new technologies or new treatments in health care. Consultants often come from the health fields: physicians, nurses, and other health personnel, but other professionals are also active as ethics consultants. Lawyers, pastoral counselors, philosophers, and social workers also offer bioethics consultation services (III, Nolen and Coutts 1993).Drs. Siegler, Pellegrino, and Singer wrote in 1990 that "Physician-ethicists and professional ethicists will continue to work side by side in the future. One is not likely to replace the other, nor is this desirable, because... (shrink)

BackgroundCaregivers may play a fundamental role in the clinical pathway of cancer patients. They provide emotional, informational, and functional support as well as practical assistance, and they might help mediate the interaction and communication with the oncologists when care options are discussed, or decisions are made. Little is known about the impact of dyadic dynamics on patient-doctor communication, patient's satisfaction, or adherence to the therapies. This study protocol aims to evaluate the efficacy of a psychological support intervention on patients-caregivers (...) relationship and their alignment in the treatment decision-making process and estimate related improvement in patient' compliance/adherence to treatments.MethodsA total of 102 patients-caregivers' dyads will be involved, among breast and prostate cancer patients. The study entails a pre- post- evaluation through psychological questionnaires, with a randomization of participants in two conditions, the experimental one in which subjects participate in a psychological support consultation, and the control one, where dyads do not receive any intervention. A follow up after 6 months from the enrollment is planned.DiscussionA positive impact of the psychological support intervention on patients' anxiety, depression, distress, and perceived social support is expected. Such improvements can directly affect patients' satisfaction and adherence to treatments. Data gathered from this study may inform health care providers, policy makers, and public health managers about the importance of caregiver's involvement in the cancer care pathway, and the best way to manage it. A further impact is to develop a specific intervention protocol to support caregivers' involvement in cancer care pathway, improve patient's wellbeing, the interaction with physicians and the compliance with the cancer treatment. (shrink)

Background: Families and clinicians must often weigh competing priorities when making medical decisions for a pediatric patient at the end of life. Few empirical data exist regarding the importance that clinicians place on varying priorities and whether clinical practice conforms to decision-making standards discussed in the literature. Methods: We administered a discrete choice experiment to understand the relative importance of nine pediatric end-of-life decision-making priorities using responses from 364 nurses and physicians from three intensive care units (ICUs) (pediatric ICU, (...) pediatric cardiothoracic ICU, neonatal ICU) in a large children's hospital, with a 54% response rate. We used latent class analysis to characterize subgroups of health professionals based on their patterns of importance for the nine attributes and examined differences in class membership using multinomial logistic regression. Results: Eighty-two percent of respondents were nurses, consistent with the proportion of nurse and physician staff in the units. Latent class analysis separated our sample of health professionals into five distinct classes. All five groups rated the child's comfort and the best interests as most important but differed regarding how they valued other considerations: Group 1 rated highly consideration of the entire family and medical judgment; Group 2, the entire family's interests, parents’ preferences, and religious beliefs; Group 3, maintaining harmony between parents and medical team; Group 4, responsible use of medical resources; and Group 5, medical evidence and prolonging the child's life. Those with more years of experience were less likely to fall in Group 5 (medical evidence/life-prolonging). Profession was not associated with group membership. Conclusions: Nurses and physicians who care for dying children prioritize foremost the child's best interests and comfort but then possess varying secondary priorities about what is most important when making medical decisions. Pediatric palliative care and ethics consultative services should be aware of and prepared to address these differing concerns. (shrink)

Group decisions raise a number of substantial philosophical and methodological issues. We focus on the goal of the group decision exercise itself. We ask: What should be counted as a good group decision-making result? The right decision might not be accessible to, or please, any of the group members. Conversely, a popular decision can fail to be the correct decision. In this paper we discuss what it means for a decision to be "right" and what components are required in a (...) decision process to produce happy decision-makers. Importantly, we discuss how "right" decisions can produce happy decision-makers, or rather, the conditions under which happy decision-makers and right decisions coincide. In a large range of contexts, we argue for the adoption of formal consensus models to assist in the group decision-making process. In particular, we advocate the formal consensus convergence model of Lehrer and Wagner (1981), because a strong case can be made as to why the underlying algorithm produces a result that should make each of the experts in a group happy. Arguably, this model facilitates true consensus, where the group choice is effectively each person's individual choice. We analyse Lehrer and Wagner's algorithm for reaching consensus on group probabilities/utilities in the context of complex decision-making for conservation biology. While many conservation decisions are driven by a search for objective utility/probability distributions (regarding extinction risks of species and the like), other components of conservation management primarily concern the interests of stakeholders. We conclude with cautionary notes on mandating consensus in decision scenarios for which no fact of the matter exists. For such decision settings alternative types of social choice methods are more appropriate. (shrink)

A first principle in ethics consultation is that reasoning is essential. A second principle is that the religious and cultural views of patients and their surrogates are usually respected. What can be done when these principles collide—when patients or surrogates have religious or cultural views and beliefs that clinicians find unreasonable or even offensive? Mediation may provide some approaches to assist us in providing the most ethically appropriate assistance.

As medical technology continues to improve, more people will live longer lives with multiple chronic illnesses with increasing cumulative debilitation, including cognitive dysfunction. Combined with the aging of society in most developed countries, an ever-growing number of patients will require surrogate decision-makers. While advance care planning by patients still capable of expressing their preferences about medical interventions and end-of-life care can improve the quality and accuracy of surrogate decisions, this is often not the case, not infrequently leading (...) to demands for ineffective, inappropriate and prolonged interventions. In 1980 LaFollette called for the licensing of prospective parents, basing his argument on the harm they can do to vulnerable people. In this paper, I apply his arguments to surrogate decision-makers for cognitively incapacitated patients, rhetorically suggesting that we require potential surrogates to qualify for this position by demonstrating their ability to make reasonable and rational decisions for others. I employ this theoretical approach to argue that the loose criteria by which we authorize surrogates’ generally unchallenged power should be reconsidered. (shrink)

“Moral hazard” is a term familiar in economics and business ethics that illuminates why rational parties sometimes choose decisions with bad moral outcomes without necessarily intending to behave selfishly or immorally. The term is not generally used in medical ethics. Decision makers such as parents and physicians generally do not use the concept or the word in evaluating ethical dilemmas. They may not even be aware of the precise nature of the moral hazard problem they are experiencing, beyond (...) a general concern for the patient's seemingly excessive burden. This article brings the language and logic of moral hazard to pediatrics. The concept reminds us that decision makers in this context are often not the primary party affected by their decisions. It appraises the full scope of risk at issue when decision makers decide on behalf of others and leads us to separate, respect, and prioritize the interests of affected parties. (shrink)

Berger (2019) argues effectively that “representativeness is more aptly understood as a variable that is multidimensional and continuous based on relational moral authority,” and also makes some useful suggestions about how taking this observation seriously might require changes in current patterns of practice regarding surrogates. But the essay raises additional important questions about how the Best Interest Standard (BIS) should be used among unrepresented patients and other patients as well because many surrogates besides those who “have no actionable knowledge of (...) a patient’s preferences” find themselves in positions in which they need to determine, with the physician, what is in the patient’s best interests. In this commentary, we therefore provide support for the ethical superiority of BIS judgments made by a multi-stakeholder process (rather than solo decision-makers), and sketch a process by which such judgments might be made. (shrink)

The family is the exemplar community of Chinese society. This essay explores how Chinese communitarian norms, expressed in thick commitments to the authority and autonomy of the family, are central to contemporary Chinese bioethics. In particular, it focuses on the issue of surrogate decision making to illustrate the Confucian family-grounded communitarian bioethics. The essay first describes the way in which the family, in Chinese bioethics, functions as a whole to provide consent for significant medical and surgical interventions when a patient (...) has lost decision-making capacity. It is argued that the practice of not having an established order for surrogate decision makers (e.g., spouse, children, and then parents), as it is done in the United States, reflects the acknowledgment that the family as a social reality cannot be reduced to a stereotype of the appropriate order of default decision makers. This description of the family as being in authority to make surrogate decisions for an incompetent family member is enriched by an elaboration of the differences among the concepts of patient autonomy, family autonomy, and moral autonomy. The Chinese model, as well as the Confucian communitarian life of families, engages a family autonomy that is supported by a Confucian understanding of moral autonomy, rather than individual autonomy. Finally, the issue of possible conflicts between patient and family interests in relation to a patient’s past wishes in the Chinese model is addressed in light of the role of the physician. (shrink)

Over the last century, and especially since the publication of the Belmont Report in 1978, respect for persons, as exemplified by respect for autonomous decision-making, has become a central tenet in the practice of medicine. The authority of cognitively competent adults to make their own healthcare decisions is enshrined in both law and practice in most advanced industrialized nations. The right to consent to or to refuse medical interventions is virtually absolute, but is contingent on the provision of materially relevant (...) information about the benefits and burdens or risks of the proposed treatment as well as the freedom from coercion by others, especially healthcare personnel. This power also extends to the kinds, amounts and details of the proposed intervention, including the option to decline to hear anything, if one so chooses, assuming that this is a rational choice. This respect transfers to other competent individuals who are authorized as surrogates to decide for those who have temporarily or permanently lost the capacity to make their own healthcare decisions. (shrink)

Ethical reasoning is an integral part of the work of a clinical ethics consultant. Ethical reasoning has a close relationship with an individual’s beliefs and values, which, for religious adherents, are likely to be tightly connected with their spiritual perspectives. As a result, for individuals who identify with a religious tradition, the process of thinking through ethical questions is likely to be influenced by their religious worldview. The connection between ethical reasoning and one’s spiritual perspective raises questions (...) about the role that CECs’ personal religious worldviews should play in their professional lives and their consultative work. This paper offers numerous arguments critiquing the inclusion of a consultant’s own spiritual perspective in her work and has identified only limited circumstances under which such inclusion might be permissible. In particular, these arguments lead to the conclusion that a CEC’s personal beliefs should never influence her ethical analysis or development of a recommendation. Further, religious appeals should not be used in communication during decision-making conversations other than to describe the patient or surrogate’s stated perspective. There may be limited cases in which a CEC may share her spiritual worldview with a patient with the intent of building a collaborative relationship, but such situations should be approached with extreme caution. (shrink)

BackgroundEvaluation of decision-making capacity to consent to medical treatment has proved to be difficult in patients with dementia. Studies showed that physicians are often insufficiently trained in the evaluation of decision-making capacity. In this study, we present findings from a secondary analysis of a qualitative interviews with physicians. These interviews were initially used to assess usability of an instrument for the evaluation of decision-making capacity. By looking at difficult cases of decision-making capacity evaluation in patients (...) class='Hi'>with dementia, we provide recommendations for such evaluations in clinical practice.MethodsWe used thematic coding to analyse physicians’ narratives of problematic decision-making capacity evaluations in patients with dementia to uncover challenging issues of decision-making capacity evaluation.ResultsIn this study, decision-making capacity evaluations in patients with dementia were mainly perceived as challenging when they pertained to treatment refusals and treatment unrelated circumstances, such as psychiatric consultation, advance directives, and new living arrangements. Furthermore, the physicians reported training needs regarding situation-independent challenges with decision-making capacity evaluation.ConclusionsUpon further examining self-reported training needs and challenging cases, we have developed recommendations to improve decision-making capacity evaluations in clinical practice. In these recommendations, we argue that being able to evaluate decision-making capacity is an integral part of the informed consent process. (shrink)

In my career as a primary care physician and as a palliative care consultant, I have assisted many patients to die with their full consent. None of them wanted to die, and all would have chosen other paths had their disease not been so severe and irreversible. To a person, none of these patients thought of themselves as “suicidal,” and they would have found that label preposterous and demeaning. In fact, the kind of personal disintegration that the label implies (...) is just what is trying to be prevented by those choosing this possibility. So on behalf of patients who have chosen this option, I reject the title of this debate as it unnecessarily tars the discussion with the suggestion of mental illness. In my primary care practice, I have also met many patients who were “suicidal” in the mental health sense of the word, and rest assured I have assisted none of them to die. In fact, I have at times had them involuntarily hospitalized to prevent them from carrying out their wishes. (shrink)

The goal is to present how shared decision-making in paediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Pediatric Oncology Group centres participated in this prospective study. The sample comprised a parent and physician of the minor patient. Surveys were statistically analysed by comparing physicians’ and parents’ perspectives and by evaluating factors associated with children’s actual involvement. Perspectives of ninety-one parents and twenty physicians were obtained for 151 children. Results indicate that for six (...) aspects of information provision examined, parents’ and physicians’ perceptions differed. Moreover, parents felt that the children were more competent to understand diagnosis and prognosis, assessed the disease of the children as worse, and reported higher satisfaction with decision-making on the part of the children. A patient’s age and gender predicted involvement. Older children and girls were more likely to be involved. In the decision-making process, parents held a less active role than they actually wanted. Physicians should take measures to ensure that provided information is understood correctly. Furthermore, they should work towards creating awareness for systematic differences between parents and physicians with respect to the perception of the child, the disease, and shared decision-making. (shrink)

Since Oregon implemented its Death with Dignity Act, many additional states have followed suit demonstrating a growing understanding and acceptance of aid in dying processes. Traditionally, the patient has been the one to request and seek this option out. However, as Death with Dignity acts continue to expand, it will impact the role of physicians and bring up questions over whether physicians have the ethical obligation to facilitate a conversation about AID with patients during end (...) of life discussions. Patients have the right to make informed decisions about their health, which implies that physicians have an obligation to discuss with and inform patients of the options that will accomplish the patients’ goals of care. We will argue that physicians have an ethical obligation to inform certain patients about AID during end of life care discussions. We will also address what this obligation encompasses and explore guidelines of when and how these conversations should occur and proceed. Earlier guidelines, presented by various palliative care and ethics experts, for proceeding with such conversations have mostly agreed that the discussion of hospice and end of life care with patients should be initiated early and that the individual goals of a patient during the remaining duration of life should be thoroughly examined before discussion of appropriate options. In discussing AID, physicians should never recommend but inform patients about the basics so that they can make an informed decision. If patients express further interest in AID, the physician should open up the dialogue to address the reasoning behind this decision versus other possible treatments to ensure that patients clearly comprehend the process and implications of their decision. Ultimately, any end of life choice should be made by patients with the full capacity to express what they envision for the remaining duration of life and to comprehend the advantages and disadvantages of all the possible options. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Ethics Committees in HospitalsPat Milmoe McCarrick (bio)(Literature about hospital ethics committees has grown enormously since Scope Note 3 first appeared. This update provides new information about resources and documents now available while continuing to include important earlier sources.)Hospital ethics committees increasingly have taken hold in the United States since 1983, when the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research encouraged their (...) creation in its report, Deciding to Forego Life-Sustaining Treatment (III, 1983, p. 5).The President's Commission report (pp. 160-64) suggested the following roles for ethics committees: 1) review of treatment decisions made on behalf of incompetent, terminally ill patients; 2) review of medical decisions having ethical implications with the option, in cases of disagreement, to refer cases to a court with proper jurisdiction; 3) provision of social, psychological, spiritual, or other counseling for patients, family members, physicians, or other hospital staff; 4) establishing guidelines regarding treatment or other medical decisions; and 5) sponsoring or conducting educational programs to inform all concerned, including the public, about ethical problems in medicine.No exact count of these committees is available. According to estimates cited by Donald F. Phillips, managing editor of Hospital Ethics, about two-thirds to three-fourths of hospitals with more than 200 beds have ethics committees, as do about one-third of hospitals under 200 beds. He thinks that about half of the 6,000 hospitals in the United States now have working ethics committees.Several journal articles and a court decision in the late 1970s influenced their formation. A 1975 journal article by pediatrician Karen Teel (VII A) urged the use of hospital ethics committees to provide for dialogue in individual care situations as an appropriate sharing of responsibility. Another early article suggested that beyond parents and treating physicians, a "disinterested," mixed lay and medical committee could consider cases about defective newborns to improve the ethical decisionmaking process (VII A, Robertson and Fost, 1976). Three 1977 discussions in the Hastings Center Report highlighted this new concept (VII A, Levine; Shannon; Veatch).Produced at the National Reference Center for Bioethics Literature, Kennedy Institute of Ethics, Georgetown University, Washington, DC 20057. It is supported by funds provided under grant number LM04492 from the National Library of Medicine, National Institutes of Health. Literature available through June 1992 is represented in this Scope Note. [End Page 285]The court decision was the March 31, 1976 ruling by the New Jersey Supreme Court in the Karen Quinlan case. The parents of a young woman in a persistent vegetative state had requested that she be taken off a respirator. The court designated a "prognosis" role for the hospital ethics committee and stipulated that the committee must concur that the patient will never return to a "cognitive, sapient state" before the life-support system can be withdrawn (In the Matter of Karen Quinlan, 70 N.J. 10, 355 A.2d 647, cert. denied sub nom. Garger v. New Jersey, 429 U.S. 922 (1976)). Shortly after the Quinlan decision, Massachusetts General Hospital's Clinical Care Committee created an ad hoc subcommittee (a psychiatrist, a legal counsel, an ICU nurse, an oncologist/internist, a surgeon, and a lay person who had recovered from serious cancer disease) which looked at 15 cases. Based on the subcommittee's success, establishment of a permanent committee to review treatment of the terminally ill was recommended by the critical care committee (VII A, Clinical Care Committee 1976).In its 1984 Baby Doe rules, the federal government recommended establishment of infant care review committees, which promoted the growth of hospital ethics committees (VII C, Povar 1991). In July 1987 Maryland became the first state to require by law that hospitals establish patient care advisory committees to offer advice about choices available in the care of life-threatening illnesses; this requirement was extended to nursing homes in 1990 [codified as amended at Md. Health-Gen. Code Ann. Sections 19-370 to -374 (1990)] (VII C, Hollinger 1991).Recently the role for these committees has been noted in the Accreditation Manual for Hospitals, 1992 Supplement (p. 10, Patient Rights, Section RI. 1.1.6.1) of the Joint Commission... (shrink)

Due to improvements in medicine, the figures of patients with disorders of consciousness (DoC) are increasing. Diagnostics of DoC and prognostication of rehabilitation outcome is challenging but necessary to evaluate recovery potential and to decide on treatment options. Such decisions should be made by doctors and patients’ surrogates based on medico-ethical principles. Meeting information needs and communicating effectively with caregivers as the patients´ most common surrogate-decision makers is crucial, and challenging when novel tech-nologies are introduced. This qualitative study (...) aims to explore information needs of informal DoC caregivers, how they manage the obtained information and their perceptions and experiences with caregiver-physician communication in facilities that implemented innovative neurodiagnostics studies. In 2021, we conducted semi-structured interviews with nine caregivers of clinically stable DoC patients in two rehabilitation centers in Italy and Germany. Participants were selected based on consecutive purposeful sampling. Caregivers were recruited at the facilities after written informed consent. All interviews were recorded, transcribed verbatim and translated. For analysis, we used reflexive thematic analysis according to Braun & Clarke (2006). Caregivers experienced the conversations emotionally, generally based on the value of the information provided. They reported to seek positive information, comfort and empathy with-in the communication of results of examinations. They needed detailed information to gain a deep understanding and a clear picture of their loved-one’s condition. The results suggest a mismatch between the perspectives of caregivers and the perspectives of medical profession-als, and stress the need for more elaborate approaches to the communication of results of neu-rodiagnostics studies. (shrink)

As an incapacitated patient is unable to make decisions regarding their care, physicians turn to next-of-kin when appointing a surrogate decision-maker in the absence of an advanced directive. With the increasing complexity of modern families, physicians are facing new ethical dilemmas when choosing the individual to make end-of-life decisions for their patients. Legal definitions and hierarchies are no longer adhering to the purpose of a surrogate-decision maker, which is to maintain a patient’s autonomy. Moral criteria for surrogates, (...) which emphasize the importance of making decisions that align with the patient’s desires and wishes and negate biological relationships over emotional connections, are becoming much more important. This paper explores a case study in which physicians must appoint a surrogate decision-maker for an incapacitated patient, forced to choose between a biological relationship and a strong emotional connection. (shrink)

Background Following passage of the Patient Self Determination Act in 1990, health care institutions that receive Medicare and Medicaid funding are required to inform patients of their right to make their health care preferences known through execution of a living will and/or to appoint a surrogate-decision maker. We evaluated the impact of external factors and perceived patient preferences on physicians’ decisions to honor or forgo previously established advance directives (ADs). In addition, physician views regarding legal risk, patients’ ability to (...) comprehend complexities involved with their care, and impact of medical costs related to end-of-life care decisions were explored. Methods Attendees of two Mayo Clinic continuing medical education courses were surveyed. Three scenarios based in part on previously court-litigated matters assessed impact of external factors and perceived patient preferences on physician compliance with patient-articulated wishes regarding resuscitation. General questions measured respondents’ perception of legal risk, concerns over patient knowledge of idiosyncrasies involved with their care, and impact medical costs may have on compliance with patient preferences. Responses indicating strength of agreement or disagreement with statements were treated as ordinal data and analyzed using the Cochran Armitage trend test. Results Three hundred eighty-eight of 951 surveys were completed (41% response rate). Eighty percent reported they were likely to honor a patient’s AD despite its 5 year age. Fewer than half (41%) would honor the AD of a patient in ventricular fibrillation who had expressed a desire to “pass away in peace.” Few (17%) would forgo an AD following a family’s request for continued resuscitative treatment. A majority (52%) considered risk of liability to be lower when maintaining someone alive against their wishes than mistakenly failing to provide resuscitative efforts. A large percentage (74%) disagreed that patients could not appreciate complexities surrounding their care while 69% agreed that costs should never impact a physician’s decision as to whether to comply with a patient’s AD. Conclusions Our findings highlight the impact, albeit small, external factors have on physician AD compliance. Most respondents based their decision on the clinical situation at hand and interpretation of the patient’s initial wishes and preferences expressed by the AD. (shrink)

Traditionally, physicians and parents made decisions about children’s health care based on western practices. More recently, with legal and ethical development of informed consent and recognition for decision making, children are becoming active participants in their care. The extent to which this is happening is however blurred by lack of clarity about what children — of diverse levels of cognitive development — are capable of understanding. Moreover, when there are multiple surrogate decision makers, parental and professional conflict can (...) arise concerning children’s ‘best interest’. Giving children a voice and offering choice promotes their dignity and quality of life. Nevertheless, it also presents with many challenges. Case studies using pseudonyms and changed situational identities are used in this article to illuminate the complexity of ethical challenges facing nurses in end-of-life care with children and families. (shrink)

Increasing complexities facing physicians negotiating the bedside decision continue to fuel the debate over who is the appropriate party to offer ethics consults, should one be needed, during the decision-making process. Some very good arguments have been put forth on behalf of clinical ethicists as being the proper and best party to engage in ethics consultations. However, serious questions remain about the role of the clinical ethicist and his ability to provide the necessary level of objectivity called for (...) in an ethics consult.I argue that the clinician's professional psyche, or mode of thinking as a professional, leaves him little room to maneuver as an objective and detached third party ethics consultant. Several factors are cited and discussed that greatly influence the analyses applied to a case problem by physicians. The most formidable of these factors are habits and the practice of defensive medicine. I conclude that clinical ethicists are less suited for the overall tasks required of an objective consultant in medical cases that appear to involve insurmountable ethical issues. (shrink)

Background: Issues concerning legislation and regulation with respect to the role of nurses in euthanasia and physician-assisted suicide gave the Minister for Health reason to commission a study of the role of nurses in medical end-of-life decisions in hospitals, home care and nursing homes.Aim: This paper reports the findings of a study of the role of nurses in euthanasia and physician-assisted suicide, conducted as part of a study of the role of nurses in medical end-of-life decisions. The findings for (...) hospitals, home care and nursing homes are described and compared.Method: A questionnaire was sent to 1509 nurses, employed in 73 hospitals, 55 home care organisations and 63 nursing homes. 1179 responses were suitable for analysis. The questionnaire was pilot-tested among 106 nurses, with a response rate of 85%.Results: In 37.0% of cases, the nurse was the first person with whom patients discussed their request for euthanasia or physician-assisted suicide. Consultation between physicians and nurses during the decision-making process took place quite often in hospitals and nursing homes and less frequently in home care situations . In some cases , nurses administered the euthanatics.Conclusions: The results show substantial differences between the intramural sector and the extramural sector , which are probably linked to the organisational structure of the institutions. Consultation between physicians and nurses during the decision-making process needs improvement, particularly in home care. Some nurses had administered euthanatics, although this task is by law exclusively reserved to physicians. (shrink)

ABSTRACT Objectives: To investigate whether Chinese adolescents in Hong Kong share similar perceptions with their Western counterparts regarding their capacity for autonomous decision‐making, and secondarily whether Chinese parents underestimate their adolescent children's desire and capacity for autonomous decision‐making. Method:‘Healthy Adolescents’ and their parents were recruited from four local secondary schools, and ‘Sick Adolescents’ and their parents from the pediatric wards and outpatient clinics. Their perceptions of adolescents' understanding of illnesses and treatments, maturity in judgment, risk‐taking, openness to divergent opinions, (...) pressure from parents and doctors, submission to parental authority and preference for autonomy in medical decision‐making are surveyed by a 50‐item questionnaire on a five‐point Likert scale. Results: Findings indicate that Chinese adolescents aged 14–16 perceive themselves to possess the necessary cognitive abilities and maturity in judgment to be autonomous decision‐makers like their Western counterparts. Paradoxically, although they hesitate to assert their autonomy, they are also unwilling to surrender that autonomy to their parents even under coercion or intimidation. Parents tend to underestimate their adolescents' preferences for making autonomous decisions and overestimate the importance of parental authority in decision‐making. Conclusion:‘14‐and‐above’ Chinese adolescents in Hong Kong perceive themselves as capable of autonomous decision‐making in medically‐related matters, but hesitate to assert their autonomy, probably because of the Confucian values of parental authority and filial piety that are deeply embedded in the local culture. (shrink)

Clinical ethics consultants often confront the most difficult clinical encounters, typically in the setting of chronically critically ill patients and surrogate decision makers. These encounters require not only analytical skills but interpersonal skills as well. In this article, I focus on an interpersonal skill absent from the American Society for Bioethics and the Humanities Task Force’s Core Competencies for Healthcare Ethics Consultation. I introduce the psychoanalytic concept of transference and argue that knowledge and use of transference phenomena are sometimes (...) indispensable for ethics consultation with surrogate decision makers. For solicitation of moral views, disclosure of relevant beliefs and values, and identification of the central ethical question—essential to assessment and analysis—cannot at times begin without recognition and working through of transference. (shrink)

Objectives: To investigate whether Chinese adolescents in Hong Kong share similar perceptions with their Western counterparts regarding their capacity for autonomous decision-making, and secondarily whether Chinese parents underestimate their adolescent children's desire and capacity for autonomous decision-making.Method:‘Healthy Adolescents’ and their parents were recruited from four local secondary schools, and ‘Sick Adolescents’ and their parents from the pediatric wards and outpatient clinics. Their perceptions of adolescents' understanding of illnesses and treatments, maturity in judgment, risk-taking, openness to divergent opinions, pressure from (...) parents and doctors, submission to parental authority and preference for autonomy in medical decision-making are surveyed by a 50-item questionnaire on a five-point Likert scale.Results: Findings indicate that Chinese adolescents aged 14–16 perceive themselves to possess the necessary cognitive abilities and maturity in judgment to be autonomous decision-makers like their Western counterparts. Paradoxically, although they hesitate to assert their autonomy, they are also unwilling to surrender that autonomy to their parents even under coercion or intimidation. Parents tend to underestimate their adolescents' preferences for making autonomous decisions and overestimate the importance of parental authority in decision-making.Conclusion:‘14-and-above’ Chinese adolescents in Hong Kong perceive themselves as capable of autonomous decision-making in medically-related matters, but hesitate to assert their autonomy, probably because of the Confucian values of parental authority and filial piety that are deeply embedded in the local culture. (shrink)

Most bioethicists and professional medical societies condemn the practice of ?slow codes.? The American College of Physicians ethics manual states, ?Because it is deceptive, physicians or nurses should not perform half-hearted resuscitation efforts (?slow codes?).? A leading textbook calls slow codes ?dishonest, crass dissimulation, and unethical.? A medical sociologist describes them as ?deplorable, dishonest and inconsistent with established ethical principles.? Nevertheless, we believe that slow codes may be appropriate and ethically defensible in situations in which cardiopulmonary (...) resuscitation (CPR) is likely to be ineffective, the family decision makers understand and accept that death is inevitable, and those family members cannot bring themselves to consent or even assent to a do-not-resuscitate (DNR) order. In such cases, we argue, physicians may best serve both the patient and the family by having a carefully ambiguous discussion about end-of-life options and then providing resuscitation efforts that are less vigorous or prolonged than usual. (shrink)

Background: The Albanian medical system and Albanian health legislation have adopted a paternalistic position with regard to individual decision making. This reflects the practices of a not-so-remote past when state-run facilities and a totalitarian philosophy of medical care were politically imposed. Because of this history, advance directives concerning treatment refusal and do-not-resuscitate decisions are still extremely uncommon in Albania. Medical teams cannot abstain from intervening even when the patient explicitly and repeatedly solicits therapeutic abstinence. The Albanian law on health (...) care has no provisions regarding limits or withdrawal of treatment. This restricts the individual's healthcare choices.DiscussionThe question of 'medically futile' interventions and pointless life-prolonging treatment has been discussed by several authors. Dutch physicians call such interventions 'medisch zinloos' (senseless), and the Netherlands, as one of the first states to legislate on end-of-life situations, actually regulates such issues through appropriate laws. In contrast, leaving an 'advance directive' is not a viable option for Albanian ailing individuals of advanced age. Verbal requests are provided during periods of mental competence, but unfortunately such instructions are rarely taken seriously, and none of them has ever been upheld in a legal or other official forum.SummaryEnd-of-life decisions, treatment refusal and do-not-resuscitate policies are hazardous options in Albania, from the legal point of view. Complying with them involves significant risk on the part of the physician. Culturally, the application of such instructions is influenced from a mixture of religious beliefs, death coping-behaviors and an immense confusion concerning the role of proxies as decision-makers. Nevertheless, Albanian tradition is familiar with the notion of 'amanet', a sort of living will that mainly deals the property and inheritance issues. Such living wills, verbally transmitted, may in certain cases include advance directives regarding end-of-life decisions of the patient including refusal or termination of futile medical treatments. Since these living wills are never formally and legally validated, their application is impossible and treatment refusal remains still non practicable. Tricks to avoid institutional treatment under desperate conditions are used, aiming to provide legal coverage for medical teams and relatives that in extreme situations comply with the advice of withholding senseless treatment. (shrink)