The ethics of clinically assisted nutrition and hydration in adults and the role of the advanced clinical practitioner.

Clinically assisted nutrition and hydration (CANH) decision-making in adult patients presents complex ethical dilemmas that require careful consideration and navigation. This clinical review addresses the multifaceted aspects of CANH, emphasising the importance of ethical frameworks and the role of advanced clinical practitioners (ACPs) in guiding decision-making processes. The pivotal role of ACPs is highlighted, from their responsibilities and challenges in decision-making to the collaborative approach they facilitate involving patients, families and multidisciplinary teams. The article also explores ethical principles such as autonomy, beneficence, non-maleficence, and justice, elucidating their application in CANH decision-making. Legal and ethical frameworks covering CANH are examined, alongside case studies illustrating ethical dilemmas and resolutions. Patient-centred approaches to CANH decision-making are discussed, emphasising effective communication and consideration of cultural and religious beliefs. End-of-life considerations and palliative care in CANH are also examined, including the transition to palliative care and ethical considerations in withdrawal or withholding of CANH. Future directions for research and implications for clinical practice are outlined, highlighting the need for ongoing ethical reflection and the integration of ACPs in CANH decision-making.

End-of-Life Care for Newborn Infants: A Multicenter Real-Life Prospective Study.

INTRODUCTION: Most neonatal deaths in industrialized countries follow a process of redirection of care. The objectives of this study were to describe how neonates die in a middle-income country, whether there was redirection of care, and the reason for this decision. METHODS: This was a prospective, multicenter, cross-sectional study. Neonates who died in the delivery room or in the neonatal intensive care unit in 97 hospitals over a 6-month period were included. After each neonatal death, one investigator interviewed a member of the healthcare team who had been involved in the end-of-life care process. Perinatal data, conditions that led to death, whether there was redirection of care, and details of the end-of-life process were recorded. RESULTS: Data from 697 neonatal deaths were analyzed, which represent 80% of the total deaths occurring in Argentina in that period. The main causes of death were complications of prematurity (47%) and congenital anomalies (27%). Overall, 32% of neonates died after a process of redirection of care, and this was less frequent in the neonatal intensive care unit (28%) than in the delivery room (70%, p < 0.001). The reasons for withholding/withdrawing care were inevitable death (75%) and severe compromise of expected quality of life (25%). Redirection of care consisted in withholding therapies in 66% and withdrawal in 34%. A diagnosis of a major congenital anomaly increased the odds of redirection of care (OR 5.45; 95% CI: 3.59-8.27). CONCLUSION: Most neonates who die in Argentina do so while receiving full support. Redirection of care mainly follows a condition of inevitable death.

Attitudes, beliefs, and practices toward end-of-life care among physicians in sub-Saharan Africa.

Introduction: as the opportunity to receive life-sustaining treatments expands in sub-Saharan Africa (SSA), so do potential ethical dilemmas. Little is known regarding the attitudes, beliefs, and practices of physicians in SSA regarding end-of-life care ethics. Methods: we used validated survey items addressing physician end-of-life care views and added SSA-context specific items. We identified a convenience sample using the authors' existing African professional contacts and snowball recruitment. Participants were invited via email to an anonymous online survey. Results: we contacted 78 physicians who practice critical care in Africa, and 68% (n=53) completed the survey. Of those, 66% were male, 55% were aged 36-45, 75% were Christian. They were from Kenya (30%), Zambia (28%), Rwanda (25%), Botswana (11%), and other countries (6%). Most (75%) agreed that competent patients can refuse even life-saving care. Only 32% agreed that their hospital had clear policies regarding withdrawing and withholding care, 11% agreed that their country had legal precedent for end-of-life care, and 43% believed that doctors could face legal or financial consequences for allowing patients to die by forgoing treatment. Pain control at the end of life, even if it may hasten death, was supported by 83%. However, 75% felt that clinicians undertreat pain due to fear of hastening death. Conclusion: participants strongly supported patient autonomy and end-of-life pain control but expressed concern that inadequate policy and legal frameworks exist to guide care and that pain is undertreated. Humane and actionable end-of-life care frameworks are needed to guide decisions in SSA.

Confronted With Death: Factors Affecting End of Life Decisions in the Intensive Care Unit.

To determine how often care is limited at the end of life and the factors that are associated with this decision, we reviewed the medical records of all patients that passed away in the intensive care units (ICU) of Aga Khan University. We found that a majority of patients had Do-Not-Resuscitate orders in place at the time of death. Our analysis yielded 6 variables that were associated with the decision to limit care. These are patient age, sex, duration of mechanical ventilation, Glasgow Coma Scale (GCS) ≤8 at any point during ICU stay, GCS ≤8 in the first 24 hours following ICU admission, and mean arterial pressure <65 mm of Hg while on vasopressors in the first 24 hours following ICU admission. These variables require further study and should be carefully considered during end of life discussions to allow for optimal management at the end of life.

Brain-Computer Interfaces, Completely Locked-In State in Neurodegenerative Diseases, and End-of-Life Decisions.

In the future, policies surrounding end-of-life decisions will be faced with the question of whether competent people in a completely locked-in state should be enabled to make end-of-life decisions via brain-computer interfaces (BCI). This article raises ethical issues with acting through BCIs in the context of these decisions, specifically self-administration requirements within assisted suicide policies. We argue that enabling patients to end their life even once they have entered completely locked-in state might, paradoxically, prolong and uphold their quality of life.

How do hospitalised children die? The context of death and end-of-life decision-making.

AIM: The decrease in childhood mortality, the growing clinical complexity and the greater technification of intensive care units have changed the circumstances of death of paediatric patients. The aim of this study is to describe the context of death and end-of-life decision-making. METHODS: Single-centre, retrospective, observational study of deaths in inpatients or home hospitalised children under 18 years old between 2011 and 2021. Demographic data, pathological history and circumstances of death were obtained from the medical record. The whole study period was divided into two halves for the analysis of the temporal trends. RESULTS: A total of 358 patients died, 63.2% under the age of 1 year old; 86.9% had underlying life-limiting illnesses and 73.2% died in the intensive care unit, with no differences between the two time periods. Death at home was significantly higher in the second study period (3.8% vs. 9%). A total of 20.1% died during advanced cardiopulmonary resuscitation. Life-sustaining treatment was withheld or withdrawn in 53.6%, with no differences between the time courses. Life-sustaining treatment was withheld mainly in patients with neurological, metabolic and oncological conditions, and less frequently in patients with cardiovascular or respiratory diseases or who were previously healthy. Most patients coded as palliative care (PC) or followed up by PC teams had an advance care plan (ACP) recorded, while in the others it was infrequent. PC coding, following by PC teams and ACP recording increased in the last years of the study. CONCLUSIONS: Death of children in our setting usually occurs in relation to complex underlying pathology and after the decision of withdrawing or withholding life-sustaining treatment. In this context, PC and ACP acquire greater importance. In our study, PC involvement resulted in better documentation of ACP and PC coding.

On the Ethics of Withholding and Withdrawing Unwarranted Diagnoses.

The number of diagnoses and the number of persons having diagnoses have increased substantially, and studies indicate that diagnoses are given or upheld even if they are unwarranted, that is, that they do not satisfy professionally accepted diagnostic criteria. In this article, the authors investigate the ethics of withholding and withdrawing unwarranted diagnoses. First, they investigate ethical aspects that make it difficult to withhold and to withdraw such diagnoses. Second, they scrutinize whether there are psychological factors, both in persons/patients and healthcare professionals, making it difficult to withdraw and withhold unwarranted diagnoses. Lastly, they use recent elements of the withholding-versus-withdrawing treatment debate in medical ethics to investigate whether there are any differences between withholding and withdrawing treatment and withdrawing and withholding unwarranted diagnoses. The authors conclude that it is crucial to acknowledge and address all these issues to reduce and avoid unwarranted diagnoses.

Natural language processing and network analysis in patients withdrawing from life-sustaining treatments: a retrospective cohort study.

BACKGROUND: Providing palliative care to patients who withdraw from life-sustaining treatments is crucial; however, delays or the absence of such services are prevalent. This study used natural language processing and network analysis to identify the role of medications as early palliative care referral triggers. METHODS: We conducted a retrospective observational study of 119 adult patients receiving specialized palliative care after endotracheal tube withdrawal in intensive care units of a Taiwan-based medical center between July 2016 and June 2018. Patients were categorized into early integration and late referral groups based on the median survival time. Using natural language processing, we analyzed free texts from electronic health records. The Palliative trigger index was also calculated for comparison, and network analysis was performed to determine the co-occurrence of terms between the two groups. RESULTS: Broad-spectrum antibiotics, antifungal agents, diuretics, and opioids had high Palliative trigger index. The most common co-occurrences in the early integration group were micafungin and voriconazole (co-correlation = 0.75). However, in the late referral group, piperacillin and penicillin were the most common co-occurrences (co-correlation = 0.843). CONCLUSION: Treatments for severe infections, chronic illnesses, and analgesics are possible triggers for specialized palliative care consultations. The Palliative trigger index and network analysis indicated the need for palliative care in patients withdrawing from life-sustaining treatments. This study recommends establishing a therapeutic control system based on computerized order entry and integrating it into a shared-decision model.

Muslim Jurisprudence on Withdrawing Treatment from Incurable Patients: A Directed Content Analysis of the Papers of the Islamic Fiqh Council of the Muslim World League.

This study investigates the views of contemporary Muslim jurists about withdrawing treatment of the terminally ill. Its aim is threefold. Firstly, it analyses jurists' views concerning core themes within the process of withdrawing treatment. Secondly, it provides insight into fatwas about withdrawing treatment. Thirdly, it compares these views with current medical standards in Europe and the Atlantic world on withdrawing treatment. The data consisted of six papers by Muslim jurists presented at the conference of the Islamic Fiqh Council in 2015. We conducted a directed content analysis (DCA) through a predetermined framework and compiled an overview of all previous fatwas referred to in the papers, which are also analysed. The results show that the general consensus is that if health cannot be restored, treatment may be withdrawn at the request of the patient and/or his family or on the initiative of the doctor. The accompanying fatwa emphasizes the importance of life-prolonging treatment if this does not harm the patient. It becomes apparent in the fatwa that the doctor has the monopoly in decision-making, which is inconsistent with current medical standards in Europe. Managing disclosure in view of the importance of maintaining the hope of Muslim patients may challenge the doctor's obligation to share a diagnosis with them.

Nurses' involvement in end-of-life decisions in neonatal intensive care units.

BACKGROUND: End-of-life decision-making for terminally ill neonates raises important legal and ethical issues. In Greece, no recent data on nurses' attitudes and involvement in end-of-life decisions are available. RESEARCH QUESTION/AIM: To investigate neonatal nurses' attitudes and involvement in end-of-life decisions and the relation to their socio-demographic and work-related background data. RESEARCH DESIGN: A survey was carried out in 28 neonatal intensive care units between September 2018 and January 2019. A structured questionnaire was distributed by post. PARTICIPANTS AND RESEARCH CONTEXT: The questionnaire was answered anonymously by 312 nurses (response rate, 71.1%) and returned to the investigators. ETHICAL CONSIDERATIONS: The study was approved by the Bioethics and Research Committee of Aretaieio Hospital in accordance with the Helsinki Declaration. FINDINGS: Nurses more often reported involvement in various end-of-life decisions, such as continuation of treatment without adding further therapeutic interventions for terminally ill neonates, while less reported were mechanical ventilation withdrawal and drug administration to end life. Nurses with a high attitude score, reflecting a more quality-of-life approach, were more likely to be involved in setting limits to intensive care. α low score was consistent with life preservation. Nurses' religiousness (p = 0.097), parenthood (p = 0.093), involvement in daily practice (p = 0.03), and position on the existing legal framework (p < 0.002) influenced their attitude score. DISCUSSION: The likelihood of nurses to support interventions in neonates with poor prognosis in neonatal intensive care units was related to their attitudes. After adjusting for potential confounders, the most important predictors for nurses' attitudes were parenthood, involvement in daily practice, and position supporting current legislation reform. CONCLUSION: Variability in involvement in end-of-life decisions among nurses exists on a national level.

"We Absolutely Had the Impression That It Was Our Decision"-A Qualitative Study with Parents of Critically Ill Infants Who Participated in End-of-Life Decision Making.

BACKGROUND: Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents at a German Level-III Neonatal Intensive Care Unit performed SDM to a variable but overall small extent. However, we do not know whether parents in Germany prefer an extent of more or sharing. METHODS: We performed a qualitative interview study with parents who participated in our first study. We analyzed the semi-structured interviews with qualitative content analysis according to Kuckartz. RESULTS: The participation in medical decision making (MDM) varied across cases. Overall, neonatologists and parents conducted SDM in most cases only to a small extent. All parents appreciated their experience independent of how much they were involved in MDM. The parents who experienced a small extent of sharing were glad that they were protected by neonatologists from having to decide, shielding them from a conflict of interest. The parents who experienced a large extent of sharing especially valued that they were able to fulfil their parental duties even if that meant partaking in a decision to forgo LST. DISCUSSION: Other studies have also found a variety of possibilities for parents to partake in end-of-life decision making (EOL-DM). Our results suggest that parents do not have a uniform preference for one specific decision-making approach, but rather different parents appreciate their individual experience regardless of the model for DM. CONCLUSION: SDM is apparently not a one-size-fits-all approach. Instead, neonatologists and parents have to adapt the decision-making process to the parents' individual needs and preferences for autonomy and protection. Therefore, SDM should not be prescribed as a uniform standard in medico-ethical guidelines, but rather as a flexible guidance for DM for critically ill patients in neonatology.

Frequency of Withdrawal of Life-Sustaining Therapy for Perceived Poor Neurologic Prognosis.

To measure the frequency of withdrawal of life-sustaining therapy for perceived poor neurologic prognosis among decedents in hospitals of different sizes and teaching statuses. DESIGN: We performed a multicenter, retrospective cohort study. SETTING: Four large teaching hospitals, four affiliated small teaching hospitals, and nine affiliated nonteaching hospitals in the United States. PATIENTS: We included a sample of all adult inpatient decedents between August 2017 and August 2019. MEASUREMENTS AND MAIN RESULTS: We reviewed inpatient notes and categorized the immediately preceding circumstances as withdrawal of life-sustaining therapy for perceived poor neurologic prognosis, withdrawal of life-sustaining therapy for nonneurologic reasons, limitations or withholding of life support or resuscitation, cardiac death despite full treatment, or brain death. Of 2,100 patients, median age was 71 years (interquartile range, 60-81 yr), median hospital length of stay was 5 days (interquartile range, 2-11 d), and 1,326 (63%) were treated at four large teaching hospitals. Withdrawal of life-sustaining therapy for perceived poor neurologic prognosis occurred in 516 patients (25%) and was the sole contributing factor to death in 331 (15%). Withdrawal of life-sustaining therapy for perceived poor neurologic prognosis was common in all hospitals: 30% of deaths at large teaching hospitals, 19% of deaths in small teaching hospitals, and 15% of deaths at nonteaching hospitals. Withdrawal of life-sustaining therapy for perceived poor neurologic prognosis happened frequently across all hospital units. Withdrawal of life-sustaining therapy for perceived poor neurologic prognosis contributed to one in 12 deaths in patients without a primary neurologic diagnosis. After accounting for patient and hospital characteristics, significant between-hospital variability in the odds of withdrawal of life-sustaining therapy for perceived poor neurologic prognosis persisted. CONCLUSIONS: A quarter of inpatient deaths in this cohort occurred after withdrawal of life-sustaining therapy for perceived poor neurologic prognosis. The rate of withdrawal of life-sustaining therapy for perceived poor neurologic prognosis occurred commonly in all type of hospital settings. We observed significant unexplained variation in the odds of withdrawal of life-sustaining therapy for perceived poor neurologic prognosis across participating hospitals.

Clinical Factors Influencing End-of-Life Care in a Chinese Pediatric Intensive Care Unit: A Retrospective, post-hoc Study.

Objective: End-of-life(EOL) care decision-making for infants and children is a painful experience. The study aimed to explore the clinical factors influencing the EOL care to withhold/withdraw life-sustaining treatment (WLST) in Chinese pediatric intensive care unit (PICU). Methods: A 14-year retrospective study (2006-2019) for pediatric patients who died in PICU was conducted. Based on the mode of death, patients were classified into WLST group (death after WLST) and fCPR group (death after full intervention, including cardiopulmonary resuscitation). Intergroup differences in the epidemiological and clinical factors were determined. Results: There were 715 patients enrolled in this study. Of these patients, 442 (61.8%) died after WLST and 273 (38.2%) died after fCPR. Patients with previous hospitalizations or those who had been transferred from other hospitals more frequently chose WLST than fCPR (both P < 0.01), and the mean PICU stay duration was significantly longer in the WLST group (P < 0.05). WLST patients were more frequently complicated with chronic underlying disease, especially tumor (P < 0.01). Sepsis, diarrhea, and cardiac attack (all P < 0.05) were more frequent causes of death in the fCPR group, whereas tumor as a direct cause of death was more frequently seen in the WLST group. Logistic regression analysis demonstrated that previous hospitalization and underlying diseases diagnosed before admission were strongly associated with EOL care with WLST decision (OR: 1.6; P < 0.05 and OR: 1.6; P < 0.01, respectively). Conclusions: Pediatric patients with previous hospitalization and underlying diseases diagnosed before admission were associated with the EOL care to WLST.

Perceptions of Medical Providers on Morality and Decision-Making Capacity in Withholding and Withdrawing Life-Sustaining Treatment and Suicide.

BACKGROUND: This study attempts to understand if medical providers beliefs about the moral permissibility of honoring patient-directed refusals of life-sustaining treatment (LST) are tied to their beliefs about the patient's decision-making capacity. The study aims to answer: 1) does concern about a patient's treatment decision-making capacity relate to beliefs about whether it is morally acceptable to honor a refusal of LST, 2) are there differences between provider types in assessments of decision-making capacity and the moral permissibility to refuse LST, and 3) do provider demographics impact beliefs about decision-making capacity and the moral permissibility to refuse LST. Methods: A mixed-methods survey using Likert assessment and vignette-based questions was administered to medical providers within a single health system in the upper Midwest (N = 714) to assess their perspectives on the moral acceptance and decision-making capacity in cases of withholding and withdrawing treatment and suicide. Results: Behavioral health providers report accepting of the moral permissibility of suicide (91.2%) more than either medical providers (77.2%) or surgeons (74.4%) (n = 283). Decision-making capacity was questioned more in the vignettes of the patients refusing life-saving surgery (36%) and voluntarily starvation (40.8%) than in the vignette of the patient requesting to deactivate a pacemaker (13%) (n = 283). Behavioral health providers were more concerned about the capacity to refuse life-saving surgery (55.9%) than medical providers (33.8%) or surgeons (23.1%) (n = 283). Conclusions: Respondents endorse the moral permissibility of persons to withhold or withdraw from treatment regardless of motive. Clinical concerns about a patient's treatment decision-making capacity do not strongly correlate to views about the moral permissibility of honoring refusals of LST. Different provider types appear to have different thresholds for when to question treatment decision-making capacity. Behavioral health providers tend to question treatment decision-making capacity to refuse LST more than non-behavioral health providers.

Moral distress in end-of-life decisions: A qualitative study of intensive care physicians.

PURPOSE: The purpose is to explore triggers for moral distress, constraints preventing physicians from doing the right thing and ensuing consequences in making decisions for patients approaching end of life in intensive care. MATERIALS AND METHODS: The qualitative study was undertaken in a tertiary referral intensive care unit in Northern Ireland in the United Kingdom. Drawing upon patient case studies of decisions about non escalation and/or withdrawal of life support, we undertook indepth interviews with senior and junior physicians. Interviews were transcribed verbatim and narratively analysed. RESULTS: Eighteen senior and junior physicians involved in 21 patient case studies were interviewed. Analysis determined two predominant themes: key moral distress triggers; and strategies and consequences. Junior residents reported most instances of moral distress, triggered by perceived futility, lack of continuity, protracted decisions and failure to ensure 'good death'. Senior physicians' triggers included constraint of clinical autonomy. Moral distress was far reaching, affecting personal life, working relationships and career choice. CONCLUSION: This study is the first to explore physicians' moral distress in end-of-life decisions in intensive care via a narrative inquiry approach using case studies. Results have implications for the education, recruitment and retention of physicians, relevant in the Covid 19 pandemic.

Periviable birth: A review of ethical considerations.

BACKGROUND: Advances in perinatology and medical technology have pushed the limits of viability to unprecedented extremes, leading to a growing population of NICU "graduates" with a wide range of health issues. Although survival rates from 22 weeks of gestation onwards have improved over the last 30 years, the incidence of disabilities remains the same. Providing intensive care to a high-risk population with significant mortality and morbidity raises the fundamental conflict between sanctity and quality of life. Potential severe handicap and need for frequent tertiary care inevitably impact the whole family unit and may outweigh the benefit of survival. The aim of this study is to explore and summarize the ethical considerations in neonatal care concerning perivable birth. METHODS: Eligible studies published on PubMed were included after a systematic search using the PICO methodology. RESULTS: Forty-eight studies were systematically reviewed regarding guidelines, withholding or withdrawing treatment, parental involvement, and principles applied in marginal viability. As periviable birth raises an array of complex ethical and legal concerns, strict guidelines are challenging to implement. CONCLUSIONS: Active life-sustaining interventions in neonatology should be balanced against the risk of putting infants through painful and futile procedures and survival with severe sequelae. More evidence is needed on better prediction of long-term outcomes in situations of imminent preterm delivery, while good collaboration between the therapeutic team and the parents for life-and-death decision-making is of utmost importance. HIPPOKRATIA 2021, 25 (1):1-7.

Physicians' attitudes in relation to end-of-life decisions in Neonatal Intensive Care Units: a national multicenter survey.

BACKGROUND: End-of-life decisions for neonates with adverse prognosis are controversial and raise ethical and legal issues. In Greece, data on physicians' profiles, motivation, values and attitudes underlying such decisions and the correlation with their background are scarce. The aim was to investigate neonatologists' attitudes in Neonatal Intensive Care Units and correlate them with self-reported practices of end-of-life decisions and with their background data. METHODS: A structured questionnaire was distributed to all 28 Neonatal Intensive Care Units in Greece. One hundred and sixty two out of 260 eligible physicians answered anonymously the questionnaire (response rate 66%). Demographic and professional characteristics, self-reported practices and opinions were included in the questionnaire, along with a questionnaire of 12 items measuring physicians' attitude and views ranging from value of life to quality of life approach (scale 1-5). RESULTS: Continuation of treatment in neonates with adverse prognosis without adding further therapeutic interventions was the most commonly reported EoL practice, when compared to withdrawal of mechanical ventilation. Physicians with a high attitude score (indicative of value of quality-of-life) were more likely to limit, while those with a low score (indicative of value of sanctity-of-life) were more likely for continuation of intensive care. Physicians' educational level (p:0.097), involvement in research (p:0.093), religion (p:0.024) and position on the existing legal framework (p < 0.001) were factors that affected the attitude score. CONCLUSIONS: Physicians presented with varying end-of-life practices. Limiting interventions in neonates with poor prognosis was strongly related to their attitudes. The most important predictors for physicians' attitudes were religiousness and belief for Greek legal system reform.

One last round of chemo? Insights from conversations between oncologists and lung cancer patients about prognosis and treatment decisions.

One more chemo or one too many? The increasing use of expensive cancer treatments close to the patient's death is often explained by oncologists' failure to communicate to patients how close to dying they are, implying that patients are often both ill-prepared and over-treated when they die. This article aims at interrogating the politically charged task of prognosticating. Drawing on an ethnographic study of conversations between oncologists and patients with metastatic lung cancer in a Danish oncology clinic, I show that oncologists utilize, rather than avoid, prognostication in their negotiations with patients about treatment withdrawal. The study informs the emerging sociology of prognosis in three ways: First, prognostication is not only about foreseeing and foretelling, but also about shaping the patient's process of dying. Second, oncologists prognosticate differently depending on the level of certainty about the patient's trajectory. To unfold these differences, the article provides a terminology that distinguishes between four 'modes of prognostication', namely hinting, informing, calibrating and organizing. Third, prognosticating can unfold over time through multiple consultations, emphasizing the relevance of adopting methodologies enabling the study of prognosticating over time.

Withdrawal of treatment in a pediatric intensive care unit at a Children's Hospital in China: a 10-year retrospective study.

BACKGROUND: Published 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. METHODS: Withdrawal of treatment for children in the pediatric intensive care unit (PICU) 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. RESULTS: The 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 (87.4% reduction). 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 (interquartile range: 4.0-72.0) in 2006 to 40.5 months (interquartile range: 8.0-99.0) 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" (20.9%). Only a few guardians ascribed treatment withdrawal to economic reasons. CONCLUSIONS: The 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.

What we talk about when we talk about pediatric suffering.

In this paper I aim to show why pediatric suffering must be understood as a judgment or evaluation, rather than a mental state. To accomplish this task, first I analyze the various ways that the label of suffering is used in pediatric practice. Out of this analysis emerge what I call the twin poles of pediatric suffering. At one pole sits the belief that infants and children with severe cognitive impairment cannot suffer because they are nonverbal or lack subjective life experience. At the other pole exists the idea that once child suffering reaches some threshold it is ethical to eliminate the sufferer. Concerningly, at both poles, any particular child vanishes from view. Second, in an attempt to identify a theory of suffering inclusive of children, I examine two prominent so-called experiential accounts of suffering. I find them both wanting on account of their absurd entailments and their flawed assumptions regarding the subjective experiences of people who cannot communicate expressively. Finally, I extend arguments found in Alastair MacIntyre's Dependent Rational Animals to argue that child suffering can be understood only as a set of absences-absences of conditions such as love, warmth, and freedom from pain. An evaluation of these absences reveals the exquisite dependency of children. It also discloses why pediatric suffering is necessarily a social and political event. Unlike adults, children will never be either the authors or the mitigators of their own suffering. Rather, children must rely wholly on others in order to resist suffering, grow, and flourish.