Maximus the Confessor distinguishes three stages in the spiritual becoming of man: vita passibilis i.e. the way of life in that man is living under the reign of the bodily passions, apatheia as state of liberation from the reign of the lower passions, and vita passiva as modus vivendi in which the human makes the personal experience of the revelation and the presence of God. Thereby being man means according to Maximus suffering under the rule of someone - divine or (...) demonic - or something. The human condition is especially passive. Even contemplation (theōria) becomes in this approach a kind of passion: the passive experience of the presence of God. Although there is an old tradition in the classical Greek culture concerning the equivalency mathein-pathein (from Aeschylus to Aristotle and until Neo-Platonist thinkers like Proclus) which is received in the Christian tradition first of all by Denys the Areopagite, Maximus the Confessor is one of the first Christian theologians who tries to reconstruct the classical conception concerning the typology of the human ways of life (vita activa-vita contemplativa) as being based on passion: passion of lower impulses, passion of the demonic temptations and sins, but also passion of the overwhelming divine presence. Man can only lead a passionate life as slave of the lower passions (pathēmata) and as such of the devil or as slave of God in the Holy Spirit. (shrink)

1988, as the TV cycle ‘Decalogue’ was finished by Krzysztof Kieslowski, one of the most intriguing appearances throughout its episodes was the character of the silent witness, a young man played by Arthur Barciś. He is the first character who appears at the beginning of Decalogue I and therefore of the whole series and who returns in eight from the ten films of the cycle in very different hypostases: as nomadic camper, surveyor, nurse, bus driver, or rowboat driver, traveler on (...) foot or by bike etc. The film critics were intrigued by this character and interpreted him in different ways, especially in key either religious or ethical. They all and Kieslowski himself agreed that the silent witness is a strange and symbolic appearance that comes out from the frames of everyday life. It is as if a curtain would break or be torn and from beyond it something foreign and strange would appear, difficult to integrate into our categories, but which is surprisingly so eloquent for us. The phenomenology, that Kieslowski describes, is broken in this manner, but, paradoxically, also consolidated by this presence, that gives it meaning and content. (shrink)

Through a focus on one child’s extended stay in a Pediatric Intensive Care Unit, I raise four general questions about pediatric medicine: How should physicians communicate with parents of very sick children? How should physicians involve parents of very sick children in treatment decisions? How should care be coordinated when a child is being treated by different medical teams with rotating personnel? Should the guidelines for making judgments of medical futility and discontinuation of treatment differ when the patient is a (...) child rather than an adult? (shrink)

The Internet has vastly expanded the opportunity for patients and families to share their medical narratives with the general public. Yet blogs and social media posts can also prove a source of con...

This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers’ moral distress and decrease length of stay for patients with life-threatening illnesses. We evaluated the innovation using a pre/post intervention design measuring provider moral distress and comparing patient outcomes using retrospective historical controls. Physicians and nurses on staff in our pediatric intensive care unit in a quaternary care children's hospital participated in the evaluation. There were 60 patients (...) in the interventional group and 66 patients in the historical control group. We evaluated the impact of weekly meetings to establish goals of care for patients with longer than 10 days length of stay in the ICU for a year. Moral distress was measured intermittently and reported moral distress thermometer scores fluctuated. "Clinical situations" represented the most frequent contributing factor to moral distress. Post intervention, overall moral distress scores, measured on the moral distress scale revised, were lower for respondents in all categories, and on three specific items. Patient outcomes before and after PEACE intervention showed a statistically significant decrease in PRISM indexed LOS, a statistically significant increase in both code status changes DNR, and in-hospital death, with no change in patient 30 or 365 day mortality. The addition of a clinical ethicist and senior intensivist to weekly inter-professional team meetings facilitated difficult conversations regarding realistic goals of care. The study demonstrated that the PEACE intervention had a positive impact on some factors that contribute to moral distress and can shorten PICU length of stay for some patients. (shrink)

Moral distress is an experience of profound moral compromise with deeply impactful and potentially long‐term consequences to the individual. Critical care areas are fraught with ethical issues, and end‐of‐life care has been associated with numerous incidences of moral distress among nurses. One such area where the dichotomy of life and death seems to be at its sharpest is in the pediatric intensive care unit. The purpose of this study was to understand the moral distress experiences of pediatric intensive care nurses (...) when caring for pediatric patients at the end of life. A secondary analysis was undertaken of seven transcripts from registered nurses across six Canadian pediatric intensive care units and produced three themes: under prioritization of child patient dignity, burden of insider knowledge, and environmental constraints on nursing roles and responsibilities. When caring for patients at the end of life, nurses experienced moral distress when a dignified death was not realized. Furthermore, despite interprofessional collaboration efforts in Canada, the concept of silo mentality persists and contributes to moral distress. Organizational involvement is needed to address moral distress in pediatric intensive care nurses both to achieve a dignified death for child patients and in addressing silo mentality. (shrink)

Volume 19, Issue 10, October 2019, Page 114-115.

One can find numerous examples of how health care providers have breached the Health Insurance Portability and Accountability Act by posting video recordings, photos, or identifying...

This article reports the findings of a qualitative study that explored the organizational influences on moral distress for health professionals working in pediatric intensive care units across Canada. Participants were recruited to the study from PICUs across Canada. The PICU is a high-tech, fast-paced, high-pressure environment where caregivers frequently face conflict and ethical tension in the care of critically ill children. A number of themes including relationships with management, organizational structure and processes, workload and resources, and team dynamics were (...) identified. This study provides a rare and important multi-disciplinary perspective on this topic and the findings have implications for administrators and leaders who seek to improve the moral climate of healthcare delivery. (shrink)

In most children’s hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that many of these mechanisms are closer in spirit to the goals of the pioneers of clinical ethics than is the mechanism of a formal ethics consultation. To show how this is true, we first review the history of collaboration between philosophers and physicians (...) about clinical dilemmas. Then, as a case-study, we describe the different venues that have developed at one children’s hospital to address ethical issues. At our hospital, there are nine different venues in which ethical issues are regularly and explicitly addressed. They are ethics committee meetings, Nursing Ethics Forum, ethics Brown Bag workshops, PICU ethics rounds, Grand Rounds, NICU Comprehensive Care Rounds, Palliative Care Team case conferences, multidisciplinary consults in Fetal Health Center, and ethics consultations. In our hospital, ethics consults account for only a tiny percentage of ethics discussions. We suspect that most hospitals have multiple and varied venues for ethics discussions. We hope this case study will stimulate research in other hospitals analyzing the various ways in which ethicists and ethics committees can build an ethical environment in hospitals. Such research might suggest that ethicists need to develop a different set of “core competencies” than the ones that are needed to do ethics consultations. Instead, they should focus on their skills in creating multiple “moral spaces” in which regular and ongoing discussion of ethical issues would take place. A successful ethicist would empower everyone in the hospital to speak up about the values that they believe are central to respectful, collaborative practice and patient care. Such a role is closer to what the first hospital philosophers set out to do than in the role of the typical hospital ethics consultant today. (shrink)

The paediatric intensive care unit is a high-stress environment for parents, families and health care professionals alike. Family members experiencing stress or grief related to the admission of their sick child may at times exhibit challenging behaviours; these exist on a continuum from those that are anticipated in context, through to unacceptable aggression. Rare, extreme behaviours include threats, verbal or even physical abuse. Both extreme and recurrent ‘subthreshold’ behaviours can cause significant staff distress, impede optimal clinical care and compromise patient (...) outcomes. The unique PICU environment and model of care may magnify stressors for both families and staff and the family-centred approach to care central to paediatric practice, may also contribute to contextual challenges. Pervasive conflict in paediatric healthcare is harmful for patients, families, PICU staff and the institution more broadly. We propose that caring for children and caring for staff are inseparable goals and the latter has been inadvertently but detrimentally deprioritised as FCC has become a primary focus. A transparent and graded hierarchy of responses to variable levels of challenging behaviour is necessary to ensure that families are supported, while HCPs remain protected in the workplace. This requires establishing firm limits supported by all teams and levels of the institution. As such, we aim to identify and clarify the context and impact of challenging parent and family behaviour in the PICU and to offer potential, proactive mitigation strategies, based on reflections and stakeholder discussion following recent clinical challenges and experiences in our unit. (shrink)

A summary of the existing literature related to moral distress (MD) and the paediatric intensive care unit (PICU) reveals a high-tech, high-pressure environment in which effective teamwork can be compromised by MD arising from different situations related to: consent for treatment, futile care, end-of-life decision making, formal decision-making structures, training and experience by discipline, individual values and attitudes, and power and authority issues. Attempts to resolve MD in PICUs have included the use of administrative tools such as shift worksheets, (...) the implementation of continuing education, and encouragement to report. The literature does not yet show these approaches to be effective in the resolution of MD. The need to acknowledge MD among PICU teams is discussed and an argument made that, to facilitate understanding among team members, practice stories need to be shared. (shrink)

Background There is considerable variation in the functionality of bioethical services in different institutions and countries for children in hospital, despite new challenges due to increasing technology supports for children with serious illness and medical complexity. We aimed to understand how bioethics services address bioethical concerns that are increasingly encountered in paediatric intensive care. Methods A qualitative descriptive design was used to describe clinician’s perspectives on the functionality of clinical bioethics services for paediatric intensive care units. Clinicians who were members (...) of formal or informal clinical bioethics groups, or who were closely involved with the process of working through ethically challenging decisions, were interviewed. Interviews took place online. Resulting transcripts were analysed using thematic analysis. Results From 33 interviews, we identified four themes that described the functionality of bioethics services when a child requires technology to sustain life: striving for consensus; the importance of guidelines; a structure that facilitates a time-sensitive and relevant response; and strong leadership and teamwork. Conclusions Clinical bioethics services have the potential to expand their role due to the challenges brought by advancing medical technology and the increasing options it brings for treatment. Further work is needed to identify where and how bioethics services can evolve and adapt to fully address the needs of the decision-makers in PICU. (shrink)

Pediatric critical careCritical care refers to the health care of children with life-threatening illness or following major surgery or severe injury. This care is offered in different contexts across the globe. In well-resourced environments, critical careCritical care may be provided in pediatric intensive care units, which provide highly complex medical care with advanced, potentially expensive technological devices aimed primarily at sustaining life; whereas in poorly resourced regions, only primary care may be available for critically ill or injured childrenInjured children. Even (...) where PICU facilities are available, they are a scarce and expensive resource. The knowledge and ability to sustain a critically ill or injured child’sInjured children life, potentially with effects on the child and family’s quality of lifeQuality of life and at the expense of other children’s health care, leads to frequent ethical challenges. Ethical issues related to how best to ensure optimal quality of lifeQuality of life and the fair distribution of scarce resources are common. In-depth knowledge and understanding of the individual patient’s medical, scientific and psychosocial context, through interdisciplinary discussion and collaboration; as well as familiarity with the overriding, relevant ethico-legal policiesPolicy and principles is essential for appropriate decision-makingDecision-making. Truthful communicationCommunication with the family is essential, using a shared decision-makingDecision-making process, and the child’s best interestBest interest must be central to every decision. This chapter presents an overview of the recommended approach to, and important considerations for, ethical decision-makingDecision-making in the PICU, using a hypothetical case example. (shrink)

Objective: To evaluate feasibility of the guidelines of the Groupe Francophone de Réanimation et Urgence Pédiatriques for limitation of treatments in the paediatric intensive care unit .Design: A 2-year prospective survey.Setting: A 12-bed PICU at the Hôpital Jeanne de Flandre, Lille, France.Patients: Were included when limitation of treatments was expected.Results: Of 967 children admitted, 55 were included with a 2-day median delay. They were younger than others , had a higher paediatric risk of mortality score , and a higher (...) paediatric overall performance category score at admission ; all p<0.002. 34 children died. A limitation decision was made without meeting for 7 children who died: 6 received do-not-resuscitate orders and 1 received withholding decision. Decision-making meetings were organised for 31 children, and the following decisions were made: 12 DNROs , 4 withholding , with 14 withdrawing and 1 continuing treatment . After limitation, 21 children died and 10 survived . 13 procedures were interrupted because of death and 11 because of clinical improvement . Parents’ opinions were obtained after 4 family conferences , 3 days after inclusion. The first meeting was planned for 6 days after inclusion and held on the 7th day after inclusion; 80% of parents were immediately informed of the decision, which was implemented after half a day.Conclusions: GFRUPs procedure was applicable in most cases. The main difficulties were anticipating the correct date for the meeting and involving nurses in the procedure. Children for whom the procedure was interrupted because of clinical improvement and who survived in poor condition without a formal decision pointed out the need for medical criteria for questioning, which should systematically lead to a formal decision-making process. (shrink)

I had heard rumblings of the possibility of consult on this patient. As a pediatric intensivist conducting consults for my institution's clinical bioethics service, I had come to appreciate that many low‐ to moderate‐level ethical dilemmas are present in the pediatric intensive care unit (PICU) every single day. Despite this, or maybe because of it, it takes quite a morally complicated situation to trigger a consult for the service.Sam was a three‐month‐old who had been born full‐term without complications. In (...) the weeks prior to admission, his parents found that he was not feeding well and at times struggled to catch his breath. At our institution's PICU, it was determined that his decline was secondary to dilated cardiomyopathy, for which he would require cardiac transplantation for survival. Sam's parents were unsure if putting him through a heart transplant was the right thing to do, but they were unable to tolerate the thought of losing him. After an extensive consent process, they decided to pursue cardiac transplantation. (shrink)

IntroductionIntensive care units are places where technologically advanced and aggressive treatment is the norm. End-of-life decision making for children in pediatric intensive care units is a complex process both medically and ethically. The author examined providers’ decision-making processes that influence both the technique of conversations and the recommendations given to parents regarding limitation or withdrawal of life sustaining treatments.MethodsA qualitative study was conducted in a large PICU. Interview data were analyzed by coding all transcripts and identifying concepts and themes (...) that were then used in the formation of a conceptual framework. This analysis was validated with peer review sessions.ResultsThe author identified four major themes regarding decision-making. They are: Expectations and Perspectives, Communication Enhancers and Inhibitors, Decision Enablers and Barriers, and Conversation Mechanics.DiscussionAdditional research is needed to fully understand the complex decisi... (shrink)

Advance care planning (ACP) is a process that seeks to elicit patients’ goals, values, and preferences for future medical care. While most commonly employed in adult patients, pediatric ACP is becoming a standard of practice for adolescent and young adult patients with potentially life-limiting illnesses. The majority of research has focused on patients and their families; little attention has been paid to the perspectives of healthcare providers (HCPs) regarding their perspectives on the process and its potential benefits and limitations. Focus (...) groups were conducted with 15 physicians as part of a larger study of adolescent and young adult ACP in hematopoietic stem cell transplant (HSCT) patients. This study identified two categories important to the utility of ACP in pediatric HSCT patients; (1) the temporal context of ACP and decision making and (2) the limitations of pediatric ACP, with subcategories identified as (a) embodied and witnessed knowing, (b) the impact of clinical cascades—when the treatment of one organ system creates complications in another system that needs to be treated—and a creation of a “new normal” following complications of illness and its treatment in the pediatric intensive care unit (PICU), (c) the balancing of adolescents’ autonomy with their capacity to make informed medical decisions, and (d) the epistemological frames that differ between HCP and patients and their families. These findings support ACP in adolescent and young adult HSCT patients, with a number of implications for practice as this process becomes more common. (shrink)

BackgroundPublished data and practice recommendations on end-of-life care generally reflect Western practice frameworks; there are limited data on withdrawal of treatment for children in China.MethodsWithdrawal of treatment for children in the pediatric intensive care unit of a regional children’s hospital in eastern China from 2006 to 2017 was studied retrospectively. Withdrawal of treatment was categorized as medical withdrawal or premature withdrawal. The guardian’s self-reported reasons for abandoning the child’s treatment were recorded from 2011.ResultsThe incidence of withdrawal of treatment for children (...) in the PICU decreased significantly; for premature withdrawal the 3-year average of 15.1% in 2006–2008 decreased to 1.9% in 2015–2017. The overall incidence of withdrawal of care reduced over the time period, and withdrawal of therapy by guardians was the main contributor to the overall reduction. The median age of children for whom treatment was withdrawn increased from 14.5 months in 2006 to 40.5 months in 2017. Among the reasons given by guardians of children whose treatment was withdrawn in 2011–2017, “illness is too severe” ranked first, accounting for 66.3%, followed by “condition has been improved”. Only a few guardians ascribed treatment withdrawal to economic reasons.ConclusionsThe frequency of withdrawal of medical therapy has changed over time in this children’s hospital PICU, and parental decision-making has been a large part of the change. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Whisper Before You GoJohn K PettyDavid came with a bang.1A momentary prelude from a dysphonic chorus of pagers announce “Level 1 Pediatric Trauma—MVC ejected” before the abrupt crescendo of the trauma bay doors opening. He is maybe two. Maybe three–years–old. It is hard to tell when a child is strapped in, strapped down, nonverbal, intubated, and alone.The flight team speaks for him, “Four–year–old boy improperly restrained in a single–vehicle (...) crash into a ditch. He was partially ejected. He was unresponsive and pulseless at the scene. He got CPR and code drugs, and they got a pulse back. Emergency medical service (EMS) took him to the nearest hospital where they needled his chest, called for air transport, and scanned him up. He has been shocky for us since we picked him up. Glasgow Coma Scale (GCS) has been three the whole time. They said his head scan showed subarachnoid hemorrhage.”With the words of the flight team as background narrative, we get about doing our thing—hopefully more method and less madness. Bang, bang, bang! Check the tube. Vital signs. IV fluids. Place a chest tube. Hang the blood. Quick X–ray. Neuro exam—nothing. Get him off the board. Warm him up. Place the orogastric (OG) tube. Bang, bang, bang!The neurosurgery resident opens the CT scans from the other hospital. The brain and cervical spine scans show a disaster: some swelling and bleeding in the higher brain, but the worst damage is in the lower brain, brainstem, and top of the spinal cord. I have heard a neurosurgeon describe this pattern before as “internal decapitation.” Such language never makes it into the patient’s chart. For David the last two words of the neurosurgery consult note will eventually read, “Prognosis grim.”He remains unstable in the trauma bay. Inaction is death. We ultrasound his heart, abdomen, and pelvis. He has fluid that shouldn’t be around his heart. He is dying of the neuro injury we cannot control, but the pericardial fluid might be giving him shock, and we can control that. We can’t ignore the fluid. Shouldn’t ignore it. At least, wouldn’t ignore it. So, we bang up to the operating room. Squeezing blood. Spiking fluid. Oxygen tank and crash cart. Up we go.In the operating room, we do much and we do well. We release the fluid around the heart and find it was CPR, not heart injury that put it there. In the pericardial flash we get a view of the cardiac athlete, pounding like the 26th mile of the marathon. We explore the abdomen and find it swollen but innocent of an injury that would take his life. We place our lines and tubes as the neurosurgeons place theirs. If nothing else, we will be able to measure what lies ahead.“Good work, team,” and we bump the door on the way to the pediatric intensive care unit (PICU).The care in the PICU is more Apache brave than Gaelic knight—more bottles, fewer scissors. The curtains and carpets mute the tones. Our efforts continue, but I get a word that David’s father has arrived. He is sitting in a small, private waiting room off of the main PICU waiting room. The PICU staff colloquially refer to this as “the bad news room.” I take a seat next to a solitary man who is having the worst day of his life. His worst day so far.“I am Dr. Petty, and I am one of the doctors who is taking care of your son. I am very sorry about what has happened. Maybe you can tell me a little bit about what you understand is going on, and I’ll tell you what I know.” [End Page 17]He tells me that his wife was driving David back from her sister’s house, just the two of them. He doesn’t know what happened, but he got a call from the other hospital about the crash. His wife was badly hurt. He heard that David had died, but they got him back. Both were transferred up to the... (shrink)

The HIV/AIDS epidemic has placed increasing demands on limited paediatric intensive care services in developing countries. The decision to admit HIV infected children with Pneumocystis carinii pneumonia into the paediatric intensive care unit has to be made on the best available evidence of outcome and the ethical principles guiding appropriate use of scarce resources. The difficulty in confirming the diagnosis of HIV infection and PCP in infancy, issues around HIV counselling, and the variance in the outcome of HIV infected children (...) with PCP admitted to the PICU in African studies compound this process. Pragmatic decision making will require evaluation of at least three ethical questions: are there clinical and moral reasons for admitting HIV positive children with PCP to the PICU, should more resources be committed to caring for HIV children who require the PICU, and how can we morally choose candidates for the PICU? Those working in the PICU in HIV endemic regions need to make difficult personal decisions on effective triage of admissions of HIV infected children with PCP based on individual case presentation, availability of resources, and applicable ethical principles. (shrink)

The Health (Regulation of Termination of Pregnancy) Act 2018 was commenced on 01/01/2019 in Ireland. The Act provides for legal termination of pregnancy under defined circumstances including for any reason at < 12 weeks gestation; and where two doctors agree there is ‘a condition affecting the foetus that is likely to lead to the death of the foetus either before, or within 28 days of, birth’. As such, abortion for congenital anomaly (CA) can occur at a number of time points, (...) depending on the adjudged severity. Infants born with CAs frequently require significant medical intervention and account for a high proportion of admissions to paediatric intensive care units (PICUs). The purpose of this paper was to evaluate the number of infants with CAs admitted to an Irish PICU in the period before and after the implementation of the Act. All PICU admissions < 1 month of age to a single Irish paediatric hospital between 2012 and 2021 were analysed. CAs were recorded, and the periods before and after the commencement of the Act compared. We found a difference in admissions involving CAs, particularly those related to congenital heart disease involving single ventricle anatomy. It is plausible that this difference was as a result of improved access to abortion services following the implementation of the Act. This article explores the legal conditions related to the abortion of a foetus with a CA in Ireland, and the possible impact of the Independent Review of the Operation of the Health ( Regulation of Termination of Pregnancy) Act 2018. (shrink)