Parents' experiences of palliative care decision-making in neonatal intensive care units: An interpretative phenomenological analysis.

AIM: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn. METHODS: Audio-recorded face-to-face interviews were led and analysed using interpretative phenomenological analysis. Eight families (seven mothers and five fathers) whose baby underwent withholding and/or withdrawing of life-sustaining treatment in three neonatal intensive care units from two regions in France were included. RESULTS: The findings reveal two paradoxes within the meaning-making process of parents: role ambivalence and choice ambiguity. We contend that these paradoxes, along with the need to mitigate uncertainty, form protective psychological mechanisms that enable parents to cope with the decision, maintain their parental identity and prevent decisional regret. CONCLUSION: Role ambivalence and choice ambiguity should be considered when shared decision-making in the neonatal intensive care unit. Recognising and addressing these paradoxical beliefs is essential for informing parent support practices and professional recommendations, as well as add to ethical discussions pertaining to parental autonomy and physicians' rapport to uncertainty.

Care of the Patient Nearing the End of Life in the Neurointensive Care Unit.

BACKGROUND: Neurologically critically ill patients present with unique disease trajectories, prognostic uncertainties, and challenges to end-of-life (EOL) care. Acute brain injuries place these patients at risk for underrecognized symptoms and unmet EOL management needs, which can negatively affect their quality of care and lead to complicated grief in surviving loved ones. To care for patients nearing the EOL in the neurointensive care unit, health care clinicians must consider neuroanatomic localization, barriers to symptom assessment and management, unique aspects of the dying process, and EOL management needs. AIM: We aim to define current best practices, barriers, and future directions for EOL care of the neurologically critically ill patient.

[Withdrawal of Life-Sustaining Treatment in the PICU From the Nursing Staff's Perspective: Integrative Review]. / Beendigung lebenserhaltender Maßnahmen auf der Kinderintensivstation aus Perspektive der Pflegefachpersonen.

Withdrawal of Life-Sustaining Treatment in the PICU From the Nursing Staff's Perspective: Integrative Review Abstract: Background: Withdrawal of life sustaining measures is a common mode of treatment prior to the death of a critically ill child and has implications for all involved. The perspective of nurses has not yet been considered in this context. Aim: How do nurses experience the termination of life-sustaining measures in the paediatric intensive care unit? What is their role in this process? Methods: An integrative review was conducted to answer the research question. The literature search was performed in October 2022 in the CINAHL, Medline and PsycINFO databases. Results: Three qualitative and five quantitative studies were included. The confrontation with emotions, uncertainties in the decision-making process, challenges and conflicts in collaboration, in interacting with those involved and in the provision of care determine the experience of nurses during treatment withdrawal. The nurses as involved in the decision-making process and representative of interests are influenced by intrarole conflicts. Conclusion: Nursing professionals need support to cope with their experiences in the context of treatment withdrawal in children. In addition to surveying the type and scope of support measures, interprofessional guidelines must be developed when life-sustaining measures are withdrawn. This includes future research to specify the role of nurses in treatment withdrawal and includes, for example, the description of specific tasks, necessary skills or the extent of involvement in decision-making.

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.

Effects of life-sustaining treatment plans on healthcare expenditure and healthcare utilization.

PURPOSE: To develop an ethical and cultural infrastructure for Life-Sustaining Treatment (LST) plan, it is crucial to carefully analyze its impact and ensure that healthcare utilization is maintained at an appropriate level, avoiding excessive medical interventions. This study aims to investigate the effects of LST decisions on both healthcare expenditure and utilization. METHODS: This cohort study utilized claims data from the National Health Insurance Service, encompassing all medical claims in South Korea. We included individuals who had planned to withdraw or withhold their LST between January and December 2018, identified by claim code IA71, IA72, IA73. We followed a total of 28,295 participants with documented LST plan who were deceased by June 2020. Participants were categorized into LST withdrawal / withholding and LST continuation groups. The dependent variables were healthcare expenditure and utilization. We construct a generalized linear model to analyze the association between these variables. RESULTS: Out of the 28,295 participants, 24,436 (86.4%) chose to withdraw or withhold LST, while the rest opted for its continuation. Compared to the LST continuation group, those who chose to withdraw or withhold LST had 0.91 times lower odds for total cost. Additionally, they experienced 0.91 times fewer hospitalization days and 0.92 times fewer outpatient visits than those in the LST continuation group. CONCLUSION: Healthcare expenditure and utilization deceased among those choosing to withdraw or withhold LST compared to those continuing it. These findings underscore the significance of patients actively participating in decision regarding their treatment to ensure appropriate levels of medical intervention for LST. Furthermore, they emphasize the critical role of proper education and the establishment of a cultural framework for LST plans.

Comparison of the end-of-life decisions of patients with hospital-acquired pneumonia after the enforcement of the life-sustaining treatment decision act in Korea.

BACKGROUND: Although the Life-Sustaining Treatment (LST) Decision Act was enforced in 2018 in Korea, data on whether it is well established in actual clinical settings are limited. Hospital-acquired pneumonia (HAP) is a common nosocomial infection with high mortality. However, there are limited data on the end-of-life (EOL) decision of patients with HAP. Therefore, we aimed to examine clinical characteristics and outcomes according to the EOL decision for patients with HAP. METHODS: This multicenter study enrolled patients with HAP at 16 referral hospitals retrospectively from January to December 2019. EOL decisions included do-not-resuscitate (DNR), withholding of LST, and withdrawal of LST. Descriptive and Kaplan-Meier curve analyses for survival were performed. RESULTS: Of 1,131 patients with HAP, 283 deceased patients with EOL decisions (105 cases of DNR, 108 cases of withholding of LST, and 70 cases of withdrawal of LST) were analyzed. The median age was 74 (IQR 63-81) years. The prevalence of solid malignant tumors was high (32.4% vs. 46.3% vs. 54.3%, P = 0.011), and the ICU admission rate was lower (42.9% vs. 35.2% vs. 24.3%, P = 0.042) in the withdrawal group. The prevalence of multidrug-resistant pathogens, impaired consciousness, and cough was significantly lower in the withdrawal group. Kaplan-Meier curve analysis revealed that 30-day and 60-day survival rates were higher in the withdrawal group than in the DNR and withholding groups (log-rank P = 0.021 and 0.018). The survival of the withdrawal group was markedly decreased after 40 days; thus, the withdrawal decision was made around this time. Among patients aged below 80 years, the rates of EOL decisions were not different (P = 0.430); however, mong patients aged over 80 years, the rate of withdrawal was significantly lower than that of DNR and withholding (P = 0.001). CONCLUSIONS: After the LST Decision Act was enforced in Korea, a DNR order was still common in EOL decisions. Baseline characteristics and outcomes were similar between the DNR and withholding groups; however, differences were observed in the withdrawal group. Withdrawal decisions seemed to be made at the late stage of dying. Therefore, advance care planning for patients with HAP is needed.

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.

The Mapping of Influencing Factors in the Decision-Making of End-of-Life Care Patients: A Systematic Scoping Review.

Decisions in end-of-life care are influenced by several factors, many of which are not identified by the decision maker. These influencing factors modify important decisions in this scenario, such as in decisions to adapt to therapeutic support. This presented scoping review aims to map the factors that influence end-of-life care decisions for adult and older adult patients, by a scoping review. The review was carried out in 19 databases, with the keyword 'clinical decision-making' AND 'terminal care' OR 'end-of-life care' and its analogues, including publications from 2017 to 2022. The study was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews. The search resulted in 3474 publications, where the presence of influencing factors in end-of-life decision-making for adults and the elderly was applied as a selection criterion. Fifty-four (54) of them were selected, which means 1.5% of all the results. Among the selected publications, 89 influencing factors were found, distributed in 54 (60.6%) factors related to the health team, 18 (20.2%) to patients, 10 (11.2%) related to family or surrogates and 7 (7.8%) factors related to the decision environment. In conclusion, we note that the decision-making in end-of-life care is complex, mainly because there is an interaction of different characters (health team, patient, family, or surrogates) with a plurality of influencing factors, associated with an environment of uncertainty and that result in a critical outcome, with a great repercussion for the end of life, making it imperative the recognition of these factors for more competent and safe decision-making.

Turkish imams and their role in decision-making in palliative care: A Directed Content and Narrative analysis.

BACKGROUND: Muslims are the largest religious minority in Europe. When confronted with life-threatening illness, they turn to their local imams for religious guidance. AIM: To gain knowledge about how imams shape their roles in decision-making in palliative care. DESIGN: Direct Content Analysis through a typology of imam roles. To explore motives, this was complemented by Narrative Analysis. SETTING/PARTICIPANTS: Ten Turkish imams working in the Netherlands, with experience in guiding congregants in palliative care. RESULTS: The roles of Jurist, Exegete, Missionary, Advisor and Ritual Guide were identified. Three narratives emerged: Hope can work miracles, Responsibility needs to be shared, and Mask your grief. Participants urged patients not to consent to withholding or terminating treatment but to search for a cure, since this might be rewarded with miraculous healing. When giving consent seemed unavoidable, the fear of being held responsible by God for wrongful death was often managed by requesting fatwa from committees of religious experts. Relatives were urged to hide their grief from dying patients so they would not lose hope in God. CONCLUSION: Imams urge patients' relatives to show faith in God by seeking maximum treatment. This attitude is motivated by the fear that all Muslims involved will be held accountable by God for questioning His omnipotence to heal. Therefore, doctors may be urged to offer treatment that contradicts medical standards for good palliative care. To bridge this gap, tailor-made palliative care should be developed in collaboration with imams. Future research might include imams of other Muslim organizations.

Evaluation of flare rate and reduction strategies for bDMARDs in juvenile idiopathic arthritis: real world data from a single-centre cohort.

This study aimed to determine the flare rate (FR) in a cohort of Juvenile Idiopathic Arthritis (JIA) patients with tapered or abruptly discontinued biologic disease-modifying anti-rheumatic drugs (bDMARDs) and to identify predictors of flare. This retrospective observational study included 191 bDMARD dose-reduction events in patients with JIA followed-up at a referral hospital during the period 2000-2019. FR was analysed according to reduction strategies. To identify predictors of flare, Kaplan-Meier and Cox-regression models were plotted at 6 months (6 m), 12 months (12 m) and 24 months (24 m) following tapering (TP) or withdrawal (WD). 165 episodes of TP and 71 episodes of WD were included; 45 episodes where treatment was withdrawn after TP were included in both strategies. FR after TP was 13.4% at 6 m and increased up to 26.6% at 12 m and 51.4% at 24 m. After WD, FR was higher, 52.1% of events had a flare at 6 m and 67.6% at 12 m. Previous TP did not increase time in remission after WD of bDMARDs in the Kaplan-Meier analysis. Factors associated with flares were identified after TP at 6 m: female sex, higher number of previous bDMARDs and longer time on bDMARD treatment were positively associated with flares. Polyarticular subtype and younger age at diagnosis were associated with flares at 12 and 24 m after TP. No factors were identified in multivariable analysis after WD. TP is a successful strategy to maintain remission with lower bDMARD doses. Previous TP of bDMARDs does not seem to increase time in remission after WD.

Ethical issues in neurocritical care.

Medicine has always tried to push the limits of life. The technological and scientific progress made in resuscitation now makes it possible to keep patients who are more and more severely affected alive, by compensating for organ failure. The management of the brain-damaged patient poses specific ethical problems in intensive care. Most in-hospital deaths of patients with severe acute brain injury occur after a decision to withhold or withdraw life-sustaining treatments. In these patients, a problem is the difficulty in predicting outcome at an early stage. Our reasoning in the management of brain-damaged patients in the intensive care is based on the four main principles of medical ethics: autonomy, beneficence, non-maleficence and distributive justice. In the case of a patient suffering from cerebral palsy, consent is most often impossible to obtain. The respect of this autonomy, can be done by means of advance directives or testimonies of the support person and family. Non-malficence in the resuscitated brain-damaged patient consists of avoiding unreasonable obstinacy. Medical futility means that the proposed therapy should not be performed because available data show that it will not improve the patient's medical condition. A determination of medical futility can be made either in the presence of a vanishingly small probability of physiological effect or an exceedingly poor quality of outcome. However, a distinction must be made between loss of autonomy and unreasonable obstinacy. French law specifies that the physician must use collegial procedure in situations that may concern a brain-damaged patient. In terms of ethical decision-making, the concept of "window of opportunity" is often mentioned. The temporal approach taken is the guarantee of an absence of "a rush". It is important for the health care team and the family to share the progress of the treatment so that everyone understands the evolution of what is happening and the risks taken for the patient. The resuscitation of the brain-damaged patient poses specific and difficult ethical problems. One of the challenges is to be able to assume our decisions, understand them and defend them. It is also to maintain the coherence of our actions and the cohesion of our teams necessary for the good care of our patients.

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.

Prognosis of French COVID-19 patients with chronic liver disease: A national retrospective cohort study for 2020.

BACKGROUND & AIMS: The impact of chronic liver disease on outcomes in patients with COVID-19 is uncertain. Hence, we aimed to explore this association. METHODS: We explored the outcomes of all adult inpatients with COVID-19 in France, in 2020. We computed adjusted odds ratios to measure the associations between chronic liver disease, alcohol use disorders, mechanical ventilation and day-30 in-hospital mortality. RESULTS: The sample comprised 259,110 patients (median [IQR] age 70 (54-83) years; 52% men), including 15,476 (6.0%) and 10,006 (3.9%) patients with chronic liver disease and alcohol use disorders, respectively. Death occurred in 38,203 (15%) patients, including 7,475 (28%) after mechanical ventilation, and 2,941 (19%) with chronic liver disease. The adjusted odds ratios for mechanical ventilation and day-30 mortality were 1.54 (95% CI 1.44-1.64, p <0.001) and 1.79 (1.71-1.87, p <0.001) for chronic liver disease; 0.55 (0.47-0.64, p <0.001) and 0.54 (0.48-0.61, p <0.001) for mild liver disease; 0.64 (0.53-0.76; p <0.001) and 0.71 (0.63-0.80, p <0.001) for compensated cirrhosis; 0.65 (0.52-0.81, p <0.001) and 2.21 (1.94-2.51, p <0.001) for decompensated cirrhosis; 0.34 (0.24-0.50; p <0.001) and 1.38 (1.17-1.62, p <0.001) for primary liver cancer; and 0.82 (0.76-0.89; p <0.001) and 1.11 (1.05-1.17; p <0.001) for alcohol use disorders. Chronic viral hepatitis; non-viral, non-alcoholic chronic hepatitis; organ, including liver, transplantation, and acquired immunodeficiency syndrome were not associated with COVID-19-related death. CONCLUSION: Chronic liver disease increased the risk of COVID-19-related death in France in 2020. Therapeutic effort limitation may have contributed to COVID-19-related death in French residents with a liver-related complication or an alcohol use disorder. LAY SUMMARY: We studied the outcomes, including mechanical ventilation and day-30 mortality, of all adults with COVID-19 who were discharged from acute and post-acute care in France in 2020 (N = 259,110). Patients with mild liver disease; compensated cirrhosis; organ, including liver, transplantation; or acquired immunodepression syndrome were not at increased risk of COVID-19-related mortality. Patients with alcohol use disorders, decompensated cirrhosis, or primary liver cancer were at increased risk of COVID-19-related mortality but were less likely to receive mechanical ventilation. Our results suggest that therapeutic effort limitation may have contributed to the excess mortality in French residents with a liver-related complication or an alcohol use disorder.

Advance care planning and end-of-life care in patients with an implantable cardioverter defibrillator: The perspective of relatives.

BACKGROUND: Little is known about the last phase of life of patients with implantable cardioverter defibrillators and the practice of advance care planning in this population. AIM: To describe the last phase of life and advance care planning process of patients with an implantable cardioverter defibrillator, and to assess relatives' satisfaction with treatment and care. DESIGN: Mixed-methods study, including a survey and focus group study. SETTING/PARTICIPANTS: A survey among 170 relatives (response rate 59%) reporting about 154 deceased patients, and 5 subsequent focus groups with 23 relatives. RESULTS: Relatives reported that 38% of patients had a conversation with a healthcare professional about implantable cardioverter defibrillator deactivation. Patients' and relatives' lack of knowledge about device functioning and the perceived lack of time of healthcare professionals were frequently mentioned barriers to advance care planning. Twenty-four percent of patients experienced a shock in the last month of life, which were, according to relatives, distressing for 74% of patients and 73% of relatives. Forty-two to sixty-one percent of relatives reported to be satisfied with different aspects of end-of-life care, such as the way in which wishes of the patient were respected. Quality of death was scored higher for patients with a deactivated device than those with an active device (6.74 vs 5.67 on a 10-point scale, p = 0.012). CONCLUSIONS: Implantable cardioverter defibrillator deactivation was discussed with a minority of patients. Device shocks were reported to be distressing to patients and relatives. Relatives of patients with a deactivated device reported a higher quality of death compared to relatives of patients with an active device.

The ethics of grandfather clauses in healthcare resource allocation.

A grandfather clause is a provision whereby an old rule continues to apply to some existing situation while a new rule applies to all future cases. This paper focuses on the use of grandfather clauses in health technology appraisals (HTAs) issued by the National Institute for Health and Care Excellence (NICE) in the United Kingdom. NICE provides evidence-based guidance on healthcare technologies and public health interventions that influence resource allocation decisions in the National Health Service (NHS) and the broader public sector in England and Wales. In this context, a grandfather clause is included when NICE does not recommend treatment with a given technology. The grandfather clause provides an exemption from the general recommendation for patients who have already started treatment with the technology in question, before the publication of the NICE guidance. In this paper we first lay out the contexts in which grandfather clauses occur in NICE guidance, and then consider ethical arguments against and in support of grandfather clauses and the continuation of treatment. We argue that NICE's current practice of automatic inclusion of a grandfather clause is ethically problematic and unfair. While the inclusion of a grandfather clause may be appropriate and justified in specific cases, we argue that inclusion of such a clause should be considered as part and parcel of the decision making process on a case by case basis, rather than adopted as the default.

Continuing, Withdrawing, and Withholding Medical Treatment at the End of Life and Associated Characteristics: a Mortality Follow-back Study.

BACKGROUND: Studies on forgoing treatment often ignore treatments that are continued until death. OBJECTIVE: To investigate how often specific treatments are withdrawn or withheld before death and to describe the associated patient, physician, and care characteristics. DESIGN: National mortality follow-back study in Switzerland in 2013/2014 using a standardized survey to collect information on the patient's end of life and demographics on the physician. PARTICIPANTS: A random sample of adults who died non-suddenly without an external cause and who had met the physician completing the survey (N = 3051). MAIN MEASURES: Any of nine specific treatments was continued until death, withdrawn, or withheld. KEY RESULTS: In 2242 cases (84%), at least one treatment was either continued until death or withheld or withdrawn. The most common treatment was artificial hydration, which was continued in 23%, withdrawn in 4%, and withheld in 22% of all cases. The other eight treatments were withdrawn or withheld in 70-94% of applicable cases. The impact of physician characteristics was limited, but artificial hydration, antibiotics, artificial nutrition, and ventilator therapy were more likely to be withheld at home and in nursing homes than in the hospitals. CONCLUSIONS: Large differences exist between care settings in whether treatments are continued, withdrawn, or withheld, indicating the different availability of treatment options or different philosophies of care. While certain patient groups are more likely to have treatment withheld rather than attempted, neither patient nor physician characteristics impact the decision to continue or withdraw treatment.

End-of-life care in a pediatric intensive care unit: the impact of the development of a palliative care unit.

BACKGROUND: The purpose of this paper is to describe how end-of-life care is managed when life-support limitation is decided in a Pediatric Intensive Care Unit and to analyze the influence of the further development of the Palliative Care Unit. METHODS: A 15-year retrospective study of children who died after life-support limitation was initiated in a pediatric intensive care unit. Patients were divided into two groups, pre- and post-palliative care unit development. Epidemiological and clinical data, the decision-making process, and the approach were analyzed. Data was obtained from patient medical records. RESULTS: One hundred seventy-five patients were included. The main reason for admission was respiratory failure (86/175). A previous pathology was present in 152 patients (61/152 were neurological issues). The medical team and family participated together in the decision-making in 145 cases (82.8%). The family made the request in 10 cases (9 vs. 1, p = 0.019). Withdrawal was the main life-support limitation (113/175), followed by withholding life-sustaining treatments (37/175). Withdrawal was more frequent in the post-palliative group (57.4% vs. 74.3%, p = 0.031). In absolute numbers, respiratory support was the main type of support withdrawn. CONCLUSIONS: The main cause of life-support limitation was the unfavourable evolution of the underlying pathology. Families were involved in the decision-making process in a high percentage of the cases. The development of the Palliative Care Unit changed life-support limitation in our unit, with differences detected in the type of patient and in the strategy used. Increased confidence among intensivists when providing end-of-life care, and the availability of a Palliative Care Unit may contribute to improvements in the quality of end-of-life care.

What passive euthanasia is.

BACKGROUND: Euthanasia can be thought of as being either active or passive; but the precise definition of "passive euthanasia" is not always clear. Though all passive euthanasia involves the withholding of life-sustaining treatment, there would appear to be some disagreement about whether all such withholding should be seen as passive euthanasia. MAIN TEXT: At the core of the disagreement is the question of the importance of an intention to bring about death: must one intend to bring about the death of the patient in order for withholding treatment to count as passive euthanasia, as some sources would indicate, or does withholding in which death is merely foreseen belong to that category? We may expect that this unclarity would be important in medical practice, in law, and in policy. The idea that withholding life-sustaining treatment is passive euthanasia is traced to James Rachels's arguments, which lend themselves to the claim that passive euthanasia does not require intention to end life. Yet the argument here is that Rachels's arguments are flawed, and we have good reasons to think that intention is important in understanding the moral nature of actions. As such, we should reject any understanding of passive euthanasia that does not pay attention to intent. SHORT CONCLUSION: James Rachels's work on active and passive euthanasia has been immensely influential; but this is an influence that we ought to resist.

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.

Implantable cardioverter defibrillators at the end of life: future perspectives on clinical practice.

The implantable cardioverter defibrillator (ICD) is effective in terminating life-threatening arrhythmias. However, in the last phase of life, ICD shocks may no longer be appropriate. Guidelines recommend timely discussion with the patient regarding deactivation of the shock function of the ICD. However, research shows that such conversations are scarce, and some patients experience avoidable and distressful shocks in the final days of life. Barriers such as physicians' lack of time, difficulties in finding the right time to discuss ICD deactivation, patients' reluctance to discuss the topic, and the fragmentation of care, which obscures responsibilities, prevent healthcare professionals from discussing this topic with the patient. In this point-of-view article, we argue that healthcare professionals who are involved in the care for ICD patients should be better educated on how to communicate with patients about ICD deactivation and the end of life. Optimal communication is needed to reduce the number of patients experiencing inappropriate and painful shocks in the terminal stage of their lives.