The facilitation of tight regulatory frameworks necessary to ensure that new drugs are safe and effective have yet to be effectively applied within the paediatric population. Utilization of unlicensed and off-label drugs in children results in a variety of problems ranging from inefficacy, adverse reactions and in some cases death. This ethically questionable behaviour has led the European government to legally force pharmaceutical companies to propose paediatric applications and carry out clinical studies at early stages of drug development. (...) The new European Paediatric Regulation implemented in 2007 opens a new era of paediatric drug development and will offer the opportunity to vastly improve children's health. However, this brighter outlook for the paediatric community might encourage potentially unethical behaviour in a pharmaceutical industry that finds itself in economically unstable times. The article records the gradual evolution of the US Paediatric Exclusivity Plan and the underlying principle of the newly introduced European Paediatric Regulation. It discusses some of the potential drawbacks and detrimental consequences of implementing the new European regulation, and the prospects of avoiding these by critically evaluating the difficulties experienced by the US. (shrink)

Background: Paediatric nurses often face complex situations requiring decisions that sometimes clash with their own values and beliefs, or with the needs of the children they care for and their families. Paediatric nurses often use new technology that changes the way they provide care, but also reduces their direct interaction with the child. This may generate ethical issues, which nurses should be able to address in the full respect of the child. Research question and objectives: The purpose of (...) this review is to describe the main ethical dimensions of paediatric nursing. Our research question was, ‘What are the most common ethical dimensions and competences related to paediatric nursing?’ Research design: A rapid evidence assessment. Method: According to the principles of the rapid evidence assessment, we searched the PubMed, SCOPUS and CINAHL databases for papers published between January 2001 and March 2015. These papers were then independently read by two researchers and analysed according to the inclusion criteria. Ethical considerations: Since this was a rapid evidence assessment, no approval from the ethics committee was required. Findings: Ten papers met our inclusion criteria. Ethical issues in paediatric nursing were grouped into three areas: (a) ethical issues in paediatric care, (b) social responsibility and (c) decision-making process. Conclusion: Few studies investigate the ethical dimensions and aspects of paediatric nursing, and they are mainly qualitative studies conducted in critical care settings based on nurses’ perceptions and experiences. Paediatric nurses require specific educational interventions to help them resolve ethical issues, contribute to the decision-making process and fulfil their role as advocates of a vulnerable population (i.e. sick children and their families). Further research is needed to investigate how paediatric nurses can improve the involvement of children and their families in decision-making processes related to their care plan. (shrink)

Background Paediatric clinical research faces unique challenges that compromise optimal recruitment of children into clinical trials. A main barrier to enrolment of children is parental misconceptions about the research process. In developing countries, there is a knowledge gap regarding parental perceptions of and attitudes towards their children's participation in clinical trials. Objective To explore such perceptions and attitudes in Lebanese parents. Study design 33 in-depth interviews were conducted with parents with and without previous research experience. Interviews were tape-recorded, transcribed (...) in colloquial Arabic, and later subjected to thematic analysis. Results Benefit/risk ratio assessment was a major determinant of parental consent. Fear of adverse events or painful procedures in research was a recurring theme in most interviews. Whereas perception of direct benefit to the child, trust in the physician or institution, financial gains or having a positive previous experience in research facilitated consent, a complex informed consent form and misunderstanding of the term ‘randomisation’ hindered parental approval of participation. Conclusion Lebanese parents have perceptions of and attitudes towards children's participation in clinical trials that are similar to those reported from the industrialised world. Improving communication with parents and building trust between researchers and parents is important for successful recruitment. Investigators planning to conduct paediatric trials in developing countries need to simplify consent forms and devise new ways to explain randomisation. (shrink)

Background Pediatric critical care physician attitudes about withdrawal of ventricular assist devices (VAD) and extracorporeal membrane oxygenation (ECMO) in cases of medical futility are poorly defined. Our aim was to define current attitudes regarding the withdrawal of these devices. Methods IRB-approved, cross-sectional observational survey conducted among pediatric critical care attending physicians and fellow physicians in the United States between 2016 and 2017. Data was collected anonymously and statistically analyzed. Results A total of 158 physicians responded with 67% being attending physicians. (...) Compared to a VAD, a higher percentage had taken care of a patient on ECMO where the device was turned off because care was believed to be futile (99% vs. 84%), including currently (95% vs. 57%). Nearly all reported that it can be ethically permissible to withdraw support from a patient with a VAD and on ECMO (97% vs. 99%), but varied opinions existed as to who should ultimately make this decision if the patient/their family disagrees. More respondents agreed that a patient/their family should agree to withdrawal of VAD or ECMO support prior to initiation if futility is later determined (60% vs. 58%) and that protocols should be created for VAD and ECMO withdrawal (77% vs. 76%). Conclusion Most pediatric critical care physicians felt that it can be ethically permissible to withdraw VAD and ECMO support. Our study indicates that pediatric VAD and ECMO withdrawal protocols are desired, but further investigation is needed to determine how to best design protocols that would incorporate multiple stakeholders. (shrink)

Background: Pediatric nursing care involves many significant ethical challenges. Although nurses are broadly recognized as professionals with relevant knowledge about children and families, little is known about how nurses experience ethical concerns in their everyday practice. Objective: The objective of this study was to better understand the moral experiences and related moral distress experiences of nurses working in pediatric settings in Brazil. Design: Interpretative phenomenological study conducted through narrative interviews. Participants and research context: Nine nurses working in three pediatric settings (...) of a teaching hospital in a city of Southern Brazil. Ethical considerations: The study was approved by the Research Ethics Committee of the research site, and research ethics principles were respected throughout the study. Findings: This investigation illuminated a broader dimension of nurses’ moral distress, which was recognized as moral experience. In advancing our understanding of nurses’ moral experiences, engagement was identified as a central phenomenon that is present in the understandings and actions of nurses within their relationships in their daily practice and lived experiences. Three themes were described with regard to nurses’ relationships and their moral experiences: (a) relationship with the healthcare team; (b) relationship with the family; and (c) relationship with the child. Discussion: The findings of this study are congruent with emerging health literature that demonstrated the focus on moral distress as limiting for bioethical inquiry. Moreover, it is important to better understand and recognize nurses’ relational environment and engagements to advance understandings of the ethical dimensions of pediatric nursing practice. Conclusion: This study provides a better understanding on how engagement affects moral experiences, demonstrating how nurses can experience distress but also satisfaction, gratification, rewarding feelings, and a sense of responsibility for the care they provide. (shrink)

Smajdor addresses the problem of inferior clinical outcomes among adults with impairments of capacity to give informed consent (AWIC). She notes that AWIC are generally excluded from clinical trials to protect them against harms and avoid exploitation and claims there is a causal link between involvement in clinical trials and favourable outcomes. She argues, given this link, that we should increase AWIC representation in clinical trials and can justifiably do so by recognising the capacity of AWIC to assent. AWIC form (...) a diverse group, with multiple aetiologies, including, for example, Down syndrome, traumatic brain injury and dementia. In some cases, the inability to consent may fluctuate so that the same person could be AWIC only at certain times. Yet despite these differences, the group has a shared unmet need. We agree with Smajdor that AWIC outcomes should be improved, but question whether simply increasing representation in clinical trials is sufficient to achieve this. We identify the following points: 1. AWIC are under-represented in clinical trials. There is evidence of widespread exclusion of AWIC in clinical trials within the UK and abroad and it is often a specific exclusion criterion.1 2. AWIC have worse clinical outcomes and a lower life expectancy. The life expectancy …. (shrink)

Background In neonatal intensive care, a child's death is often preceded by a medical decision. Nurses, social workers and pastors, however, are often excluded from ethical case deliberation. If multiprofessional ethical case deliberations do take place, participants may not always know how to perform to the fullest. Setting A level-IIID neonatal intensive care unit of a paediatric teaching hospital in the Netherlands. Methods Structured multiprofessional medical ethical decision-making (MEDM) was implemented to help overcome problems experienced. Important features were: all (...) professionals who are directly involved with the patient contribute to MEDM; a five-step procedure is used: exploration, agreement on the ethical dilemma/investigation of solutions, analysis of solutions, decision-making, planning actions; meetings are chaired by an impartial ethicist. A 15-item questionnaire to survey staff perceptions on this intervention just before and 8 months after implementation was developed. Results Before and after response rates were 91/105 (87%) and 85/113 (75%). Factor analysis on the questionnaire suggested a four-factor structure: participants' role; structure of MEDM; content of ethical deliberation; and documentation of decisions/conclusions. Effect sizes were 1.67 (p<0.001), 0.69 (p<0.001) and 0.40 (p<0.01) for the first three factors respectively, but only 0.07 (p=0.65) for the fourth factor. Nurses' perceptions of improvement did not significantly exceed those of physicians. Conclusion Professionals involved in ethical case deliberation perceived that the process of decision-making had improved; they were more positive about the structure of meetings, their own role and, to some extent, the content of ethical deliberation. Documentation of decisions/conclusions requires further improvement. (shrink)

The Food and Drug Administration and the European Medicines Agency have launched a recent initiative to enhance collaboration in research, with the intent to “ensure that clinical trials submitted in drug marketing applications in the United States and European Union are conducted uniformly, appropriately, and ethically.” This initiative recalls efforts from two decades ago when the United States, the European Union and Japan formed the International Conference on Harmonization of Technical Requirements for Registration of Pharmaceuticals for Human Use as a (...) mechanism for harmonizing clinical research regulations. The intent of harmonization was to improve patients’ “access to new drugs, to prevent unnecessary global development delays and to avoid animal and human study duplications” through policy reconciliation.FDA/EMA efforts at collaboration call for a reassessment of past harmonization efforts: to what extent are ICH member policies already synchronized and to what extent can they be harmonized in the future? This paper will focus on these questions through the lens of pediatric investigation. (shrink)

The primary objective was to review pediatric ethics consultations at a large academic health center over a nine year period, assessing demographics, ethical issues, and consultant intervention. The secondary objective was to describe the evolution of PECs at our institution. This was a retrospective review of Consultation Summary Sheets compiled for PECs at our Academic Health Center between January 2008 and April 2017. There were 165 PECs reviewed during the study period. Most consult requests came from the inpatient setting, with (...) the Pediatric and Neonatal Intensive Care Units being the highest utilizers. Consultation utilization increased over the study period. The most common patient age was less than one year. Physicians were most likely to request consultation. Patient Best Interest, Withholding/Withdrawing of Life Sustaining Therapy, and Provider Moral Distress were ethical issues most commonly identified by the consultants. Making recommendations was the most common consultant intervention. The ethics consultation process evolved over time from informal provider discussions, to a hospital infant care review committee, to a pediatric only consultation service, to a combined adult/pediatric consultation service, with variable levels of salary support for consultants. Ethics consultation requests are growing at our institution. Similarities in identified ethical issues exist between our findings and existing literature, however meaningful comparisons remains elusive secondary to variability in approaches to investigation and reporting. A combined paid/volunteer/trainee ethics consultation service model appears sustainable and real time ethics consultation is feasible using this approach. (shrink)

Background: There is limited research on brain lesions in children with cerebral visual impairment of heterogeneous etiologies and according to associated subtyping and vision dysfunctions. This study was part of a larger project establishing data-driven subtypes of childhood CVI according to visual dysfunctions. Currently there is no consensus in relation to assessment, diagnosis and classification of CVI and more information about brain lesions may be of potential diagnostic value.Aim: This study aimed to investigate overall patterns of brain lesions and associations (...) with level of visual dysfunction and to compare the patterns between the classification subgroups in children with CVI.Methods: School-aged children with CVI received ophthalmological and neuro-psychological/developmental assessments to establish CVI-related subtyping. Other pediatric information was collected from medical records. MRI scans were coded according to a semi-quantitative template including brain regions and summed for total scores. Non-parametric analyses were conducted.Results: 28 children had clinical brain MRI scans available [44% of total sample, Group A n = 16, Group B n = 12]. Total brain scores ranged between 0 and 18 and were widespread across regions. 71 per cent had post-geniculate visual pathway damage. The median total brain and hemisphere scores of Group B were higher than subgroup A but differences did not reach statistical significance. No statistically significant associations were found between brain scores and vision variables.Conclusion: This study found a spread of lesions across all regions on the brain scans in children with congenital CVI. The majority had damage in the postgeniculate visual pathways and visual cortex region suggesting this is an area of interest and potentially informative for diagnosis. However the subtyping classification did not show differences in number or region of lesions though the trend was higher toward Group B. This study confirms the complex diffuse and variable nature of brain lesions in children with congenital CVI, many of whom have other neurological impairments. (shrink)

Clinicians at quaternary centers see part of their mission as providing hope when others cannot. They tend to see sicker patients with more complex disease processes. Part of this mission is offering longshot treatment modalities that are unlikely to achieve their stated goal, but conceivably could. When patients embark on such a treatment plan, it may fail. Often treatment toward an initial goal continues beyond the point at which such a goal is feasible. We explore the progression of care (...) from longshot to fantasy using two pediatric cases. This progression may be differentiated into four distinct stages of care related to the potential of achieving the initial goals of care. Physicians are often ill prepared for the progression of treatments from a longshot hope to an unfeasible and, therefore, typically unjustified intervention. We present a structured approach to guide clinicians at referral institutions where these situations may be common. The transition of care from “longshot” to “fantasy” is an inherent part of quaternary care for the sickest of patients that has been underexplored. Physicians are often poorly equipped to approach that transition. We advocate this approach to the shift from longshot to fantasy with the belief that such a structured method will have multiple benefits, including: reduced suffering for the patient; decreased emotional burden on patient and family; decreased provider moral distress; increased likelihood of seeking high quality palliative care earlier; and provision of honest and straightforward information to patients and their families. (shrink)

Objectives: The objective of this study is to investigate the relationship between a physician’s subjective mortality prediction and the level of confidence with which that mortality prediction is made.Design and participants: The study is a prospective cohort of patients less than 18 years of age admitted to a tertiary Paediatric Intensive Care Unit at a University Children’s Hospital with a minimum length of ICU stay of 10 h. Paediatric ICU attending physicians and fellows provided mortality risk predictions and (...) the level of confidence associated with these predictions on consecutive patients at the time of multidisciplinary rounds within 24 hours of admission to the paediatric ICU. Median confidence levels were compared across different ranges of mortality risk predictions.Results: Data were collected on 642 of 713 eligible patients . Mortality predictions greater than 5% and less than 95% were made with significantly less confidence than those predictions 95%. Experience was associated with greater confidence in prognostication.Conclusions: We conclude that a physician’s subjective mortality prediction may be dependent on the level of confidence in the prognosis; that is, a physician less confident in his or her prognosis is more likely to state an intermediate survival prediction. Measuring the level of confidence associated with mortality risk predictions may therefore be important because different levels of confidence may translate into differences in a physician’s therapeutic plans and their assessment of the patient’s future. (shrink)

Background: Pediatric COVID-19 vaccine hesitancy hinders the establishment of immune barrier in children. Psychological flexibility may be a key contributing factor to pediatric COVID-19 vaccine hesitancy, and self-efficacy and coping style play an important role in the relationship, but the underlying mechanisms remain unknown.Methods: A cross-sectional study was conducted on parents from June 2021 to July 2021. A total of 382 parents were recruited for an online-investigation. Serial mediation models were used to examine whether self-efficacy and coping style mediated (...) in the psychological flexibility-pediatric COVID-19 vaccine hesitancy linkage.Result: Psychological flexibility was negatively related to pediatric COVID-19 vaccine hesitancy. Coping styles rather than self-efficacy played a mediating role independently. Serial mediation analyses indicated that self-efficacy and coping style co-play a serial mediating role in the association of psychological flexibility and pediatric COVID-19 vaccine hesitancy.Conclusion: The present study showed that high psychological flexibility, high self-efficacy, and positive coping style were conducive to the lower pediatric COVID-19 vaccine hesitancy. (shrink)

Background Nurses provide care to meet the complex needs of patients in the increasing workload in the health system and are at risk of compassion fatigue. The concept of compassion fatigue has begun drawing attention in the last decade, as it negatively affects nurses' physical and mental health, job performance and satisfaction, and therefore patient care quality. Objectives This study was to examine compassion fatigue and predictive factors in paediatric surgery nurses. Participants and research context The study was cross-sectional, (...) predictive and quantitative. It was conducted with the 135 paediatric surgery nurses. The data were sent to the email addresses of the members via Google Survey. Research data were collected with the Nurse Information Form, Compassion Fatigue Scale, Life Satisfaction Scale and Multidimensional Perceived Social Support Scale. Ethical considerations After obtaining the approval of the University’s ethics committee, the study was carried out after obtaining participants’ informed written and verbal consent. Results There was a difference between the level of compassion fatigue according to the paediatric surgery unit that worked the longest and the thought of changing their profession. Burn unit nurses and nurses who were considering changing professions have higher compassion fatigue scores. When the predictors of compassion fatigue were examined, the thought of changing the nursing profession and life satisfaction were significant predictors of compassion fatigue. The thought of changing the nursing profession and life satisfaction explained 22% of compassion fatigue. The same variables and the longest working period of the paediatric surgery unit were the estimators of the level of occupational burnout; explaining 29% of occupational burnout. Conclusions Compassion fatigue, life satisfaction and perceived social support of paediatric surgery nurses are moderate. Compassion fatigue is affected by working time, the thought of changing the profession, life satisfaction and perceived social support. (shrink)

Even though hesitations (e.g.,um/uh) were historically perceived as involuntary non-linguistic items (e.g.,Maclay & Osgood 1959), more recently, a number of scholars have suggested that hesitations can behave like (a) lexical items (e.g.,Clark & Fox Tree 2002), and (b) at least in some contexts and with some functions as grammatical items like suffixes/clitics (Kirjavainen, Crible & Beeching 2022;Tottie 2017). The current study contributes to this body of work and presents two spoken language corpus analyses (frequency analysis; network analysis) investigating the nature (...) of the Finnish planning particletota.Our results suggest thattotais more similar to grammatical items than lexical items. (shrink)

Background: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. Objective: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. Design and methods: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both (...) explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child’s serious illness. Ethical considerations: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author’s IRB approved study at the Children’s Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors’ clinical experiences. Findings: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child’s illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society. Discussion: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness. Conclusion: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue. (shrink)

The process of territorial planning is complicated, because there are different and even opposite interest of persons related with particular territory. Administrative legal regulation of territorial planning in Lithuania underlies emergence of a legal conflict, namely the administrative litigation. Investigation of the administrative dispute applying the pre-litigation procedure allows the parties thereof to save both money and time. This article presents the problematic aspects of the pre-trial investigation of the administrative disputes arising in the area of territorial planning. (...) The article is composed of an introduction, three parts and conclusions. In the first part the characteristics of the disputes arising in the area of territorial planning, the preconditions of origin, and the demand for the pre-trial investigation thereof are analyzed. Legal regulation of pre-trial investigation out-of-court of the disputes arising in the area of territorial planning is revealed in the second part. In the third part key provisions of the reform of the pre-trial investigation out-of-court of the disputes arising in the area of territorial planning are discussed. (shrink)

The philosophy of family‐centered care (FCC) promotes partnerships between families and staff to plan, deliver, and evaluate services for children and has been officially adopted by a majority of pediatric hospitals throughout North America. However, studies indicated that many parents have continued to be dissatisfied with their decision‐making roles in their child's care. This is particularly salient for parents of children with chronic ongoing complex health problems. These children are dependent upon medical technology and require frequent hospitalizations during which (...) parents must contribute to difficult decisions regarding their child's care. Given this clinical issue, an alternative theoretical perspective was explored to redress this problem. Pierre Bourdieu's theoretical concepts of field, capital, and habitus were used to analyze the hierarchical relationships in pediatric acute care hospitals and to design a briefing intervention aimed at improving parents' satisfaction with decision making in that health care setting. (shrink)

The current study examined youths’ and their parents’ perceptions concerning participation in an investigation of spontaneous and induced pain during recovery from laparoscopic appendectomy. Youth and their parents independently completed surveys about their study participation. On a scale from 0 to 10, both parents and youth rated their experience as positive. Among youth, experience ratings did not differ by pain severity and survey responses did not differ by age. Most youth reported that they would tell another youth to participate. (...) Ethical issues regarding instigation of pain in youth for research purposes are examined. (shrink)

Brain tumors are a common form of solid tumors in children and, unfortunately, they are characterized by a very uncertain prognosis. The treatment of this pathology often includes one or more very invasive surgical procedures, quite often in the very first steps of the treatment. Cases of brain tumors in children represent one of the greatest challenges for health care professionals in the domain of pediatric neurosurgery. This is clearly due to the complexity of the therapeutic plan, but also (...) to the nature of the bond that is established between the child, the parents, and the members of the staff during the often-dramatic initial phase of the illness. In this phenomenological-hermeneutic study, we explore both the emotional and organizational needs, as well as the available professional and personal resources of the staff in the Neurosurgery ward of the Meyer Children’s Hospital in Florence. The ward staff, composed of 7 surgeons, a pediatric neuro-oncologist, 12 nurses, and 4 auxiliary health care professionals, underwent in-depth interviews that were recorded. The recordings were then transcribed and submitted to content analysis according to COREQ standards. A complex picture of emotional as well as organizational demands emerged from the data. Shared experiences were pointed out, together with more specific and idiosyncratic contents characteristic of different professional roles. The focus of the present paper was twofold, first, we considered the needs that are overtly expressed by the staff, and then we discussed the main sources of their motivational drives. We found that the latter is mainly found in the quality of the therapeutic bond that is established with the children and the family members, together with the deep interest in one’s own professional activity and the effective complementarity and integration of the personal and professional qualities of the staff members within the multidisciplinary caring group. (shrink)

The aim of this study was to test whether an online video game can be used to investigate planning ability and whether fluid intelligence, objective numeracy, and subjective numeracy are predictive of game performance. Our results demonstrate that fluid intelligence is particularly important, which is in line with previous non-game-based studies that show a relationship between classical planning tests and fluid intelligence. Video games have been previously used for research into cognitive processes and taking them online facilitates data collection on (...) a larger scale. Online video games also afford data collection without the expense and stress of a laboratory environment. For these reasons, using online video games to investigate human cognition is a promising alternative to the classic cognitive paradigms used in laboratories. (shrink)

The clinical relevance of whole-exome sequencing is unquestionable. In the prenatal setting, the standard testing process of reflexing from karyotype to microarray to single-gene disorders may take several weeks, leaving a family in prolonged turmoil and often without answers in time to make a decision about the pregnancy. WES provides a powerful amount of data more quickly and with a higher yield of diagnostic results, allowing a timelier plan for medical management and decision-making. However, while results that pertain specifically (...) to the testing indication can be isolated, the potential for incidental findings or results that are unrelated to the original testing indication is significant. In 2013, ACMG published recommendations for reporting incidental or secondary findings, providing a list of 57 clinically actionable genes for which reporting should be obligatory. These recommendations were updated in 2015 to include the option to opt out of receiving all secondary findings. The list includes childhood-onset conditions, for which medical management would be immediately impacted. However, the list also includes adult-onset conditions such as hereditary breast and ovarian cancer and Lynch syndrome. Historically, decisions regarding genetic testing for these conditions have been left up to the individual until they reach the age of consent. While the 2015 recommendations are an improvement over the 2013 recommendations insofar as they allow an option to opt out of receiving secondary findings, the recommendations continue to have potentially troubling ethical consequences. (shrink)

Paediatric Intensive Care Units (PICU) are complex interdisciplinary environments where challenging, high stakes decisions are frequently encountered. We assert that appropriate decisions are more likely to be made if the decision-making process is comprehensive, reasoned, and grounded in thoughtful deliberation. Strategies to overcome barriers to high quality decision-making including, cognitive and implicit bias, group think, inadequate information gathering, and poor quality deliberation should be incorporated. Several general frameworks for decision-making exist, but specific guidance is scarce. In this paper, we (...) provide specific guidance on collaborative complex decision-making for PICUs. The proposed approach is on principles of procedural justice and pragmatic hermeneutics. The process encompasses set-up/planning, information gathering, question formulation, analysis (perspectives, values, and principles), action plan development, decision documentation, and a review and appeal mechanism. The process can be adapted to suit other clinical contexts. Research evaluating the process, exploring how best to develop education for clinicians, and how to build a culture that values high quality deliberation, is worthwhile. (shrink)

Background: It is stated that the communication and disease experiences of paediatric patients, especially paediatric oncology patients, with healthcare professionals are completely different from those of adults. Objective: The aim of this study was to determine the definitions of a good physician and good nurse provided by elementary school-age oncology patients. Research design: In this qualitative research, data were collected through semi-structured individual interviews. The data were evaluated thorough thematic analysis. Participants and research context: Eighteen children hospitalised due (...) to cancer in paediatric oncology and haematology clinics of a university hospital in Turkey. Ethical considerations: Permission to conduct the study was obtained from the Institution’s Ethics Committee. The objectives of this study were explained to the participants and families, and written consent was obtained from them. Also, participants were assured that necessary measures would be taken to protect their anonymity and confidentiality. Findings: The definitions of children were based on five main themes: interpersonal relationships, virtues, professional responsibility, security and individual characteristics. Conclusion: Children conveyed important messages to health professionals. They emphasised that a good physician and good nurse should communicate well, not only with themselves but also with their family. In addition, children were sensitive about health professionals who played with them and actively participated in the treatment by informing them about the disease. Meeting the expectations of children can be possible by improving the communication skills of physicians and nurses and by adding games and activities to the treatment and care plan. (shrink)

OBJECTIVES: To investigate the need for hospital clinical ethics committees by studying the frequency with which ethical dilemmas arose, the perceived adequacy of the process of their resolution, and the teaching and training of staff in medical ethics. DESIGN: Interviews with individuals and three multidisciplinary teams; questionnaire to randomly selected individuals. SETTING: Two major London children's hospitals. RESULTS: Ethical dilemmas arose frequently but were resolved in a relatively unstructured fashion. Ethical concerns included: the validity of consent for investigations and treatment; (...) lack of children's involvement in consent; initiation of heroic or futile treatments; resource allocation. Staff expressed the need for a forum which would provide consultation on ethical issues, develop guidelines for good ethical practice, undertake teaching and training, and provide ethical reflection outside the acute clinical setting. CONCLUSION: Multidisciplinary, accountable and audited clinical ethics committees with predominantly advisory, practice development and educational roles could provide a valuable contribution to UK clinical practice and perhaps in other countries that have not developed hospital clinical ethics committees. (shrink)

This chapter is concerned with the Cambrian explosion. It considers only one particular kind of explanation for the Cambrian radiation: that major innovations in animal body plan were produced from relatively few genetic changes of large phenotypic effect. It investigates the developmental genetic hypothesis of the origin and maintenance of body plans. This chapter suggests that the genetic architecture underlying body plans was not set during the Cambrian and has been immutable since. It shows that the link between body (...) plan and phylum can become blurry when the minor phyla are considered. (shrink)

In this paper, we investigate the use of event models for automated planning. Event models are the action defining structures used to define a semantics for dynamic epistemic logic. Using event models, two issues in planning can be addressed: Partial observability of the environment and knowledge. In planning, partial observability gives rise to an uncertainty about the world. For single-agent domains, this uncertainty can come from incomplete knowledge of the starting situation and from the nondeterminism of actions. In multi-agent domains, (...) an additional uncertainty arises from the fact that other agents can act in the world, causing changes that are not instigated by the agent itself. For an agent to successfully construct and execute plans in an uncertain environment, the most widely used formalism in the literature on automated planning is “belief states”: sets of different alternatives for the current state of the world. Epistemic logic is a significantly more expressive and theoretically better founded method for representing knowledge and ignorance about the world. Further, epistemic logic allows for planning according to the knowledge (and iterated knowledge) of other agents, allowing the specification of a more complex class of planning domains, than those simply concerned with simple facts about the world. We show how to model multi-agent planning problems using Kripke-models for representing world states, and event models for representing actions. Our mechanism makes use of slight modifications to these concepts, in order to model the internal view of agents, rather than that of an external observer. We define a type of planning domain called epistemic planning domains, a generalisation of classical planning domains, and show how epistemic planning can successfully deal with partial observability, nondeterminism, knowledge and multiple agents. Finally, we show epistemic planning to be decidable in the single-agent case, but only semi-decidable in the multi-agent case. (shrink)

Many children in the USA are prescribed psychotropic drugs that have not been fully investigated in paediatric clinical trials. The common practice of prescribing psychotropic drugs off-label poses unknown and potentially serious short- and long-term consequences for these children. This paper briefly reviews the factors associated with the lack of paediatric clinical trials. We advocate a shift toward increasing paediatric trials with psychotropic drugs through a combination of adequate safety controls, additional reimbursement/compensation, a more organised and large-scale (...) effort to collate results and outcomes across researchers and studies and additional public education about the importance of this research. In addition, we encourage the re-examination of the ethical standards for children's participation in phase 1 clinical trials as well as argue for longitudinal developmental studies on children who are prescribed off-label psychotropic drugs. (shrink)

Background: Ethical climate and moral distress have been shown to affect nurses’ ethical behaviour. Despite the many ethical issues in paediatric oncology nursing, research is still lacking in the field. Research aim: To investigate paediatric oncology nurses’ perceptions of ethical climate and moral distress. Research design: In this cross-sectional study, data were collected using Finnish translations of the Swedish Hospital Ethical Climate Survey–Shortened and the Swedish Moral Distress Scale–Revised. Data analysis includes descriptive statistics and non-parametric analyses. Respondents and (...) research context: Ninety-three nurses, working at paediatric oncology centres in Finland, completed the survey. Ethical considerations: According to Finnish legislation, no ethical review was needed for this type of questionnaire study. Formal research approvals were obtained from all five hospitals. Return of the questionnaire was interpreted as consent to participate. Results: Ethical climate was perceived as positive. Although morally distressing situations were assessed as highly disturbing, in general they occurred quite rarely. The situations that did appear often reflected performing procedures on school-aged children who resist such treatment, inadequate staffing and lack of time. Perceptions of ethical climate and frequencies of morally distressing situations were inversely correlated. Discussion: Although the results echo the recurrent testimonies of busy work shifts, nurses could most often practise nursing the way they perceived as right. One possible explanation could be the competent and supportive co-workers, as peer support has been described as helpful in mitigating moral distress. Conclusion: Nurturing good collegial relationships and developing manageable workloads could reduce moral distress among nurses. (shrink)

People with dementia have commonly been excluded from research. The adverse impacts of this exclusion are now being recognized and research literature, position statements, and ethics guidelines increasingly call for inclusion of people with dementia in research. However, few published studies investigate the views of potential participants on taking part in research should they experience dementia-related cognitive impairment. This cross-sectional survey examined the views of people aged sixty and older attending hospital outpatient clinics about clinical research participation if they had (...) dementia and impaired decision-making ability. Over 90 percent of respondents were agreeable to participating in a wide range of research activities, such as cognitive testing, physical measurements, imaging procedures, and blood draws. For drug studies, however, agreement dropped to 60 percent. Altruism was a strong motivator for research participation. In regard to who should be involved in decisions about their participation in research during periods of incapacity, respondents mostly preferred the person they appoint as their substitute decision-maker for healthcare matters or a doctor or health professional on the research team. Over three-quarters expressed interest in making an advance research directive. The study findings are discussed in relation to law reforms in Australia that aim to strengthen respect and inclusion for people with impaired decision-making capacity, especially by providing frameworks for advance planning for research participation. (shrink)

We investigate the timing of pre-answer inbreaths in order to shed light on the time course of response planning and execution in conversational turn-taking. Using acoustic and inductive plethysmography recordings of seven dyadic conversations in Dutch, we show that pre-answer inbreaths in conversation typically begin briefly after the end of questions. We also show that the presence of a pre-answer inbreath usually co-occurs with substantially delayed answers, with a modal latency of 576 vs. 100 ms for answers not preceded by (...) an inbreath. Based on previously reported minimal latencies for internal intercostal activation and the production of speech sounds, we propose that vocal responses, either in the form of a pre-utterance inbreath or of speech proper when an inbreath is not produced, are typically launched in reaction to information present in the last portion of the interlocutor's turn. We also show that short responses are usually made on residual breath, while longer responses are more often preceded by an inbreath. This relation of inbreaths to answer length suggests that by the time an inbreath is launched, typically during the last few hundred milliseconds of the question, the length of the answer is often prepared to some extent. Together, our findings are consistent with a two-stage model of response planning in conversational turn-taking: early planning of content often carried out in overlap with the incoming turn, and late launching of articulation based on the identification of turn-final cues. (shrink)

BackgroundIn paediatric oncology, healthcare professionals face moral challenges. Clinical ethics support services, such as moral case deliberation, aim to assist them in dealing with these challenges. Yet, healthcare professionals can have different expectations and goals related to clinical ethics support services.MethodsIn this study, the perceptions held by healthcare professionals regarding the importance of possible outcomes of MCDs, prior to implementation of MCDs, were investigated. A multisite, cross-sectional, quantitative study was performed at all six Paediatric Oncology Centres in Sweden. (...) Healthcare professionals answered the Euro-MCD instrument with 26 potential MCD outcomes using a scale from Not important to Very important. Descriptive and comparative statistical analyses were carried out.ResultsAll outcomes were rated high, i.e., between 3.12 and 3.78. More open communication, developing skills to analyse ethically difficult situations, better mutual understanding, and deciding on concrete actions were rated as most important. Understanding of ethical theories and critical examination of policies were rated less important. Most often nursing assistants rated higher and physicians lower than the other professions did. Women and participants without previous experience of MCDs perceived outcomes as more important. There were differences between centres as one centre had significantly higher, and one centre had significantly lower ratings compared to the others.ConclusionIt is clear that healthcare professionals want MCDs to improve teamwork and skills in order to analyse and manage ethically difficult situations. When comparing to previous research about important MCD outcomes, there were similarities in what healthcare professionals consider to be important when handling moral challenges regardless of country and potential differences in healthcare settings and systems, such as paediatric vs. adult care. (shrink)

In this paper, planning models developed in artificial intelligence are applied to the kind of planning that must be carried out by participants in a conversation. A planning mechanism is defined, and a short fragment of a free‐flowing videotaped conversation is described. The bulk of the paper is then devoted to an attempt to understand the conversation in terms of the planning mechanism. This microanalysis suggests ways in which the planning mechanism must be augmented, and reveals several important conversational phenomena (...) that deserve further investigation. (shrink)

BackgroundObtaining consent has become a standard way of respecting the patient’s rights and autonomy in clinical research. Ethical guidelines recommend that the child’s parent/s or authorised legal guardian provides informed consent for their child’s participation. However, obtaining informed consent in paediatric research is challenging. Parents become vulnerable because of stress related to their child’s illness. Understanding the views held by guardians and researchers about the consent process in Malawi, where there are limitations in health care access and research literacy (...) will assist in developing appropriate consent guidelines.MethodsWe conducted 20 in-depth interviews with guardians of children and research staff who had participated in paediatric clinical trial and observational studies in acute and non-acute settings in the Southern Region of Malawi. Interviews were audio-recorded, transcribed verbatim, and thematically analysed. Interviews were compared across studies and settings to identify differences and similarities in participants’ views about informed consent processes. Data analysis was facilitated by NVIVO 11 software.ResultsAll participants across study types and settings reported that they associated participating in research with therapeutic benefits. Substantial differences were noted in the decision-making process across study settings. Guardians from acute studies felt that the role of their spouses was neglected during consenting, while staff reported that they had problems obtaining consent from guardians when their partners were not present. Across all study types and settings, research staff reported that they emphasised the benefits more than the risks of the study to participants, due to pressure to recruit. Participants from non-acute settings were more likely to recall information shared during the consent process than participants in the acute setting.ConclusionThe health care context, culture and research process influenced participants’ understanding of study information across study types and settings. We advise research managers or principal investigators to define minimum requirements that would not compromise the consent process and conduct study specific training for staff. The use of one size fits all consent process may not be ideal. More guidance is needed on how these differences can be incorporated during the consent process to improve understanding and delivery of consent.Trial registration Not applicable. (shrink)

This exploratory study investigates the ways in which secondary U.S. history teachers who attended two iterations of a teacher professional development workshop, focusing on the history of school desegregation in Virginia, planned to teach the history of school desegregation through historical inquiry. Conceptualizing the history of school desegregation as difficult history, the authors conducted the content analysis of 23 written lesson plans generated by workshop participants. The historiography of school desegregation, and research on four dimensions of historical inquiry such as (...) Change and Continuity, Causation, Multiple Perspectives and Historical Sources, guided the data analysis. The findings suggest that teachers in this study were most likely to design their inquiry around Causation, framing the history of school desegregation within the classical timeline of the Civil Rights Movement, which begins with the Brown v. Board of Education decision (1954) and ends with the Civil Rights Act of 1968. What was often absent in these inquiries was Massive Resistance, the backlash against the Brown v. Board of Education decision, collective and political actions of African American communities to implement the Brown decision, and varying perspectives within African American communities as well as Whites who opposed the Brown decision. Implications for theory and practice are discussed. (shrink)

As workforce aging continues through the next decade, the number of persons who will retire from long-held jobs and careers will increase. In recent years, researchers across disciplines of psychology have focused attention on the impact of the retirement process on post-retirement adjustment and well-being. One area that has received attention from investigators in both psychology and economics pertains to the impact of retirement planning on the retirement decision and post-retirement adjustment. The objective of the current review is twohreefold. The (...) first goal is to review the literature on retirement planning with attention to past conceptualizations and current theoretical specifications. Second, empirical work investigating the psychological antecedents of retirement planning is reviewed. The primary conclusion reached from this review is that, conceptually, retirement planning continues to be poorly delineated and, thereby, narrowly investigated. Empirically, cognitive antecedents of retirement planning continue to figure prominently in both workplace and retirement researches. The boundary conditions of retirement planning, as well as alternative mechanisms for adult wellbeing, are discussed. Specifically, retirement planning’s meaning amidst increasing job mobility and longer life expectancies are identified as two complementary areas for future empirical integration of work - retirement research domains. (shrink)

This study is part of a comprehensive investigation of ethical thinking among male and female physicians and nurses. Nine women physicians with different levels of expertise, working in various wards in paediatric clinics at two of the university hospitals in Norway, narrated 37 stories about their experience of being in ethically difficult care situations. All of the interviewees’ narrations were concerned with problems relating to both action ethics and relation ethics. The main focus was on problems in a (...) relation ethics perspective. The most common themes in an action ethics perspective were overtreatment and withholding treatment. The more experienced physicians reasoned differently from the group of less experienced physicians and they coped with pressure in different ways. The less experienced physicians disclosed their professional experience yet seemed uncertain, while putting on an air of certainty, but the more experienced physicians disclosed both their professional and personal experience of caregiving and they seemed to allow themselves to feel uncertain in their certainty. Both groups emphasized a need for deep discussion between colleagues about their being in ethically difficult care situations. (shrink)

Alderson critiques our recent book on the basis that it overlooks children’s own views about their medical treatment. In this response, we discuss the complexity of the paediatric clinical context and the value of diverse approaches to investigating paediatric ethics. Our book focuses on a specific problem: entrenched disagreements between doctors and parents about a child’s medical treatment in the context of a paediatric hospital. As clinical ethicists, our research question arose from clinicians’ concerns in practice: What (...) should a clinician do when he or she thinks that parents are choosing a treatment pathway that does not serve the child’s best interests? Alderson’s work, in contrast, focuses on the much broader issue of children’s role in decision-making about treatment and research. We argue that these different types of work are zooming in on different aspects of paediatric ethics, with its complex mix of agents, issues and relationships. Paediatric ethics overall needs a rich mix of approaches,... (shrink)

In the western healthcare, shared decision making has become the orthodox approach to making healthcare choices as a way of promoting patient autonomy. Despite the fact that the autonomy paradigm is poorly suited to paediatric decision making, such an approach is enshrined in English common law. When reaching moral decisions, for instance when it is unclear whether treatment or non-treatment will serve a child’s best interests, shared decision making is particularly questionable because agreement does not ensure moral validity. With (...) reference to current common law and focusing on intensive care practice, this paper investigates what claims shared decision making may have to legitimacy in a paediatric intensive care setting. Drawing on key texts, I suggest these identify advantages to parents and clinicians but not to the child who is the subject of the decision. Without evidence that shared decision making increases the quality of the decision that is being made, it appears that a focus on the shared nature of a decision does not cohere with the principle that the best interests of the child should remain paramount. In the face of significant pressures toward the displacement of the child’s interests in a shared decision, advantages of a shared decision to decisional quality require elucidation. Although a number of arguments of this nature may have potential, should no such advantages be demonstrable we have cause to revise our commitment to either shared decision making or the paramountcy of the child in these circumstances. (shrink)

Genetic cancer predisposition testing in the paediatric population poses unique ethical dilemmas. Using the hypothetical example of a teenager with cancer with a high probability of having an underlying cancer predisposition syndrome, we discuss the ethical considerations that affect the decision-making process. Because legally these decisions are made by parents, genetic testing in paediatrics can remove a child’s autonomy to preserve his or her own ‘open future’. However, knowledge of results confirming a predisposition syndrome can potentially be beneficial in (...) modifying treatment and surveillance plans and enabling at-risk family members to obtain cascade testing for themselves. Considering virtue ethics to envision the best characters of the patient, parents and healthcare providers can guide them to the better choice to test or not to test, with the ultimate goal of achieving the best outcome for survival andeudaimonia, human flourishing reliably sought out. (shrink)

A challenge of performing research in the paediatric emergency and acute care setting is obtaining valid prospective informed consent from parents. The ethical issues are complex, and it is important to consider the perspective of participants, health care workers and researchers on research without prospective informed consent while planning this type of research. We performed a systematic review according to PRISMA guidelines, of empirical evidence relating to the process, experiences and acceptability of alternatives to prospective informed consent, in the (...) paediatric emergency or acute care setting. Major medical databases and grey sources were searched and results were screened and assessed against eligibility criteria by 2 authors, and full text articles of relevant studies obtained. Data were extracted onto data collection forms and imported into data management software for analysis. Thirteen studies were included in the review consisting of nine full text articles and four abstracts. Given the heterogeneity of the methods, results could not be quantitatively combined for meta-analysis, and qualitative results are presented in narrative form, according to themes identified from the data. Major themes include capacity of parents to provide informed consent, feasibility of informed consent, support for alternatives to informed consent, process issues, modified consent process, child death, and community consultation. Our review demonstrated that children, their families, and health care staff recognise the requirement for research without prior consent, and are generally supportive of enrolling children in such research with the provisions of limiting risk, and informing parents as soon as possible. Australian data and perspectives of children are lacking and represent important knowledge gaps. (shrink)

continent. 1.2 (2011): 70-75. cartography of ghosts . . . And as a way to talk . . . of temporality the topography of imagination, this body whose dirty entry into the articulation of history as rapturous becoming & unbecoming, greeted with violence, i take permission to extend this grace —Akilah Oliver from “An Arriving Guard of Angels Thusly Coming To Greet” Our disappearance is already here. —Jacques Derrida, 117 I wrestled with death as a threshold, an aporia, a bandit, (...) a part of life. —Akilah Oliver Moraine in geological lingo is that which is left behind. Moraine- a euphemism for the de-stabilizing referent of the writer-ly body as a “troubled and troubling landscape marked by cultural and historical signifiers, the body as flesh memory [...] the body as transitory” (Oliver, Author Statement). Moraine— a geological metaphor of the poet as a holder of memory, as an accumulation of rocks and debris carried along the edge, terminal, dropped at the foot of language (in language). “Flesh Memory” according to Akilah Oliver is "that which my body recalls [...] everything has to do with the task of remembrance and its narrative reinvention [...] I was always translating an idea of the world as it presented itself at any given time. To write was a choice about how to be seen, how to enter the world as translator, actor, participant, in the dialogues that apparently made the real 'real'" (Levitsky). Flesh. Memory. The stuff some poems are made from. The stuff that gets abandoned, gleaned, and picked up by more flesh and memory. "My body, my life has always felt like a kaleidoscopic rip in the dominant fabric [...] has always been a dialogue with the impossible and the apparent” (Levitsky). The impossible-body or poet's body anticipates and performs (through language) an irretrievable death. IN APORIA I realized everything I must have been doing must have been Death. It was Christmas or Labor Day—a holiday—and every time you turned on the radio they said something like ‘four million’ or ‘going to die’.” — Andy Warhol I’m trying on egos, [a justification for the planet’s continuance]. Oh hello transgressor, you’ve come to collect utilitarian debts, humbling narrative space. Give me condition and wheatgrass, I his body disintegrating. I his body is ossification. Death my habit radius, yeah yeah. I his body can’t refuse this summons. I can’t get out this fucking room. Tell me something different about torture dear Trickster. Tell me about the lightness my mother told me to pick the one i love the best how it signals everything I ever wish to believe true just holy on my ship. I jump all over this house. this is it [what I thought is thought only, nothing more deceptive than]: I his body keeps thinking someone will come along, touch me. As like human or lima bean. I’m cradling you to my breast, you are looking out. A little wooden lion you & Peter carve on Bluff Street is quieting across your cheekbone. Not at all like the kind of terror found in sleep, on trembling grounds. It is yesterday now. I have not had a chance to dance in this century. Tonight I shall kill someone, a condition to remember Sunday morning. To think of lives as repetitions [rather than singular serial incarnations]. To understand your death is as exacerbating as trying to figure out why as schoolchildren in mid-nineteen-sixties Southern California we performed reflexive motions: cutting out lace snowflakes, reading Dick and Jane search for their missing mittens, imagining snow. Disintegrat ing . The -ing gerund catapults from the non-finite verb into past, present, future. The -ing as a tail pinned to death, a dog spinning to bite and never fully reaching itself, always shy of the end, circumreferential; a double copulative: deathing. Possessively AO calls it “habit radius” (a virtual fetish attribute) or an inescapable death presence that “confronts us with the paradox of an unattainable object [...] through it’s being unattainable” (Agamben, 27). A flirtation or dialogue with an unknowable thing and aporia utilized as investigative instrument to engage (death) while (in Southern California) we “perform reflexive motions,” cut lace snowflakes, imagine snow, and pay rent like “yeah, yeah” what else is new. And this too, fiction. The book I wish to right. The restored fallen, heroic. Did you expect a different grace from the world? Or upon exit? I’m working on “tough.” They think I am already. All ready. Who is the dead person? Is "I'm sorry" real to a dead person? Browning grass. My hands on this table. A contentious century. A place to pay rent. Redemptive moments. Am I now the dead person? Dead person, dead person, will you partake in my persimmon feast? The body inside the body astounds, confesses sins of the funhouse. I too have admired the people of this planet. Their frilly, orderly intellects. The use they’ve made of cardamom, radiation as well. How they’ve pasteurized milk, loaned surnames to stars, captured tribes, diseases, streets, and ideas too. The living-body as archive: is it possible to experience the living-body as archive without a (kind of) death? Sifting the rubble, rummaging through hoarded debris, skin sheds, memory-napping, and re-awoken (in flesh and) on terrain. “An investigative poetics seeks to unravel staid communities of thought and grasp at what might always be just beyond reach; a poetics of inquiry that lies between language as meaning, and language as rapturous entry into the world of posited ideas and idealism”( Levitsky). Something snaps. Lights blow out prior to embarking upon an investigative poetics. It begins with a question (often a sexy aporia) that leads to openings. "Every politics of memory [...] implies an intervention of the state. It's a state that legislates and acts with regard to the nonfinite mass of materials to be stored, materials which must be collected, preserved” (Derrida & Stiegler, 62). It seems poetic investigation already contains the potentiality of an (invisible) archive if the writer is “always writing” especially when not. Here’s my stupid digital romantic inclination: the living-body (of a poet) is a self-sustaining archive of non-finite memories. But not even I really believe that. AO innovated and sculpted an investigative poetic praxis. In a conversation with poet Rachel Levitsky, poetic-voice is viewed not as a precious identifier, but as a means to think through/about form, concluding that form is linked to framing. While poetic-voice may have tendency to precede form, it also erupts as a result of framing techniques. “They are frames that hold the shape of thinking (which is also to say of imagining) [...].”7 This reminds me of my rabbit who symmetrically chewed the corners of his hutch, which makes me wonder if it’s an expression of the shape of some animal anxiety tick I won’t ever have access to. Beyond the form/frame, death is an unoriginal yet unique limit; death is a damn deathless thing. It functions as a source of poetic investigation; that thing always “just beyond reach.” And how is death not a fetish (in this case an obsessive reverence for something non-material)? “Insofar as it [death] is a presence, a fetish [...] it is in fact something concrete and tangible; but insofar as it is the presence of an absence, it is, at the same time, immaterial and intangible, because it alludes continuously beyond itself to something that can never really be possessed [...] The fetish is [...] a sign of an absence, it is not an unrepeatable unique object; on the contrary, it is something infinitely capable of substitution, without any successive incarnations ever succeeding in exhausting the nullity of which it is the symbol” (Agamben, 33). AO utilized absence (the absent body [catapulted by the death of a beloved]) as an apparatus to investigate. In the process of conversing with absence or that which is absent, the absent body is affectionately objectified, incessantly summonsed back to a place of recognition, of objects, a desire for the absent body to remain intact while exiting the structural limits of grammar and syntax by moving into chant forms “to say what cannot be said” (Levitsky). from AN ARRIVING GUARD OF ANGELS THUSLY COMING TO GREET dear oluchi- the light is blinking rapidly on the black boxy machine. your room seems bigger than before and i am still planning to read some of those robert jordan books of yours. yesterday at the used bookstore where i was browsing the mysteries to “stall reality” (they are really not mysteries at all, they just employ death as the plot mistress but are unable to grasp its mystery at all)—well the point is, things were calm down here for a while and the world was little. i want to be big like you. or i want you not vast, not dead, not gone, but human small and here. i am so selfish. that is what i really want. to see you again. to oil your scalp. to hear you walk in the door, say ma i’m home . give me a chance to say welcome home son. or when leaving, don’t forget your hat . what do you wear out there? i wish you could have taken your new shoes with you. i’m so proud of you. i’m sorry for the way you died. i miss you all the time. even before, i missed you. out there, one time, some different men said: “shake for me girl, i wanna be your backdoor man.” who dat you love. 5/18/03 A letter-poem in sixteen lines “dear oluchi-” is safe-housed in epistolary form. Poetic voice is rendered as internal thought meanderings, a not-so-much confession, private/(pillow?) talk in the desire to be heard/witnessed by the referent and reader with an intent to absolve. The diminutive “i” bears a relation to poet Fanny Howe’s “little g God” in that “One of the (many) things I like about little g God is that you can have a vodka tonic while you talk to little g God, sing along to Bowie’s “I’m Afraid Of Americans,” and hum Coltrane’s “A Love Supreme,” though maybe not all at the same time” (Oliver, 2009). Towards the middle of the poem AO is at a used bookstore and remarks on the funny employment of death as a ‘plot mistress’ that ‘they’ (the dubious employed mystery authors) are ‘unable to grasp’, thereby giving death a mouthpiece, a modeling job, something to do to pass the time. from THE VISIBLE UNSEEN When I first saw graffiti, I recognized in it an ugly aesthetic, a dialectics of violence, a distortion of limbs, a hieroglyph. It was only later when I read the names of the dead that I then saw the path of ghosts charted there; its narrative of loss for the visible unseen whose place in history has been fictionalized and rendered unseen under the totalizing glare of history. Inscriptions, traces, specters. Graffiti begs a public face just as ghosts require non-ghosts (humans) to sense them. The “visible unseen” is a game of hide-and-seek between public viewer and graffiti-inscriber, an ephemeral-violent aesthetic on an ephemeral-policed canvas. Graffiti-inscribers already submit to being forgotten, expect to be washed away; perhaps it’s a holy urban mandala created by gangster-type monks without Buddhism. [...] in its refusal to disappear it forces a discourse in the public imagination we are forced to see what we would rather not, to make sense of an encoded language that we cannot read on the level of meaning. it irritates, forces its agency on us, speaks outside and beyond semiotic reach. An epic font-size pervading the public’s imagination, illegible, I could just close my eyes, remain passive, drive past, abandon it beyond reach, push it further away beyond death walls. In Barcelona I watched a clean up crew wash walls with an awesome water hose but I was more intrigued by their bodies; not a distortion of limbs, not hieroglyph but also not entirely legible; the laboring body permanently erasing specters of the city, and of course they knew it was also an invitation for the ghosts to return. Graffiti is death’s little sister, is also an aporia. [...] Graffiti (fr GK -graph(os), something drawn or written, to diagram or chart) attempts to stage the impossible: to erase the essence of its own subjectivity. Graffiti is a cartography of ghosts, a mapping of elegiac rapture (the transporting of a person from one place to another, as in heaven) and rupture (the state of being broken open.) Dwelling is a fiction stasis. [...] The notion of the past as being something done with, a look-back event, inhibits the possibility of reading graffiti as rapture, as rupture. If graffiti posits history as always in the process of becoming undone. [...] Because what is the body, if not also a complex temple, an unstable site through which to negotiate subjects, materiality, economies, gods, and modes of representations? The site where we are all already belated. Graphein meaning “to write.” “Derrida says every archive makes a law, and the law of genre is its own rupture” (Bloch, 39). However, graffiti is an (non/anti)-archive of erasure due to (the politics of) washing out its subjectivity, which only adds onto (or is symptomatic of) its character. The inhibition of “reading graffiti as rapture, as rupture” is partly due to it being a “look-back” event in that it’s process involves scratching through layers to reveal previous specters underneath. Graffiti (as an ancient genre) has always been a thing of ‘becoming undone’, and therefore ‘belated and always in arrival’ (Levitsky). It’s a Dionysian activity done at night with it’s back turned toward us. "The specter [...] is of the visible, but of the invisible visible, it is the visibility of a body which is not present in flesh and blood [...] appearing for vision, to the brightness of day [...] something becomes almost visible which is visible only insofar as it is not visible in flesh and blood. It is a night visibility. As soon as there is a technology of the image, visibility brings night. It incarnates in a night body, it radiates in a night light" (Derrida & Stiegler, 115). (shrink)

Planning organizes our actions and conditions our effective-ness. To understand this philosophical hint better, the author investigates and juxtaposes two important accounts in action theory. He discusses the concept of a plan proposed by Tadeusz Kotarbiński in his praxiology (theory of efcient action), and the so called “planning theory of intention” by Michael E. Bratman. The conceptual meeting of these two proposals helps to remove aws in Kotarbiński’s action theory, it also shows the way, in which we can enrich (...) the idea of plans in the frame-work of intentions. Generally, praxiology occurs to be still an important perspective in action theory, which particularly shows how we can improve our understanding of planning when confronted with infuentialcontemporary accounts. (shrink)