Search

Children using home invasive mechanical ventilation (HIMV), a valuable therapeutic option for chronic respiratory failure, constitute a growing population. Transitioning children using HIMV from hospital to home care is a complex process that requires a multidisciplinary approach involving healthcare professionals, caregivers, and community resources. Medical stability, caregiver competence, and home environment suitability are essential factors in determining discharge readiness. Caregiver education and training play a pivotal role in ensuring safe and effective home care. Simulation training and staged education progression are effective strategies for equipping caregivers with necessary skills. Resource limitations, inadequate home nursing support, and disparities in available community resources are common obstacles to successful HIMV discharge. International perspectives shed light on diverse healthcare systems and challenges faced by caregivers worldwide. While standardizing guidelines for HIMV discharge may be complex, collaboration among healthcare providers and the development of evidence-based regional guidelines can improve outcomes for children using HIMV and their caregivers. This review seeks to synthesize literature, provide expert guidance based on experience, and highlight components to safely discharge children using HIMV. It further assesses disparities and divergences within regional and international healthcare systems while addressing relevant ethical considerations., (© 2024 Wiley Periodicals LLC.)

Coronavirus disease 2019 (COVID-19) pandemic has struck many countries and caused a great number of infected cases and death. Healthcare system across all countries is dealing with the increasing medical, social, and legal issues caused by the COVID-19 pandemic, and the standards of care are being altered. Admittedly, neurology units have been influenced greatly since the first days, as aggressive policies adopted by many hospitals caused eventual shut down of numerous neurologic wards. Considering these drastic alterations, traditional ethical principles have to be integrated with state-of-the-art ethical considerations. This review will consider different ethical aspects of care in neurologic patients during COVID-19 and how this challenging situation has affected standards of care in these patients.

Background: The coronavirus disease 2019 pandemic has or threatens to overwhelm health care systems. Many institutions are developing ventilator triage policies., Objective: To characterize the development of ventilator triage policies and compare policy content., Design: Survey and mixed-methods content analysis., Setting: North American hospitals associated with members of the Association of Bioethics Program Directors., Participants: Program directors., Measurements: Characteristics of institutions and policies, including triage criteria and triage committee membership., Results: Sixty-seven program directors responded (response rate, 91.8%); 36 (53.7%) hospitals did not yet have a policy, and 7 (10.4%) hospitals' policies could not be shared. The 29 institutions providing policies were relatively evenly distributed among the 4 U.S. geographic regions (range, 5 to 9 policies per region). Among the 26 unique policies analyzed, 3 (11.3%) were produced by state health departments. The most frequently cited triage criteria were benefit (25 policies [96.2%]), need (14 [53.8%]), age (13 [50.0%]), conservation of resources (10 [38.5%]), and lottery (9 [34.6%]). Twenty-one (80.8%) policies use scoring systems, and 20 of these (95.2%) use a version of the Sequential Organ Failure Assessment score. Among the policies that specify the triage team's composition (23 [88.5%]), all require or recommend a physician member, 20 (87.0%) a nurse, 16 (69.6%) an ethicist, 8 (34.8%) a chaplain, and 8 (34.8%) a respiratory therapist. Thirteen (50.0% of all policies) require or recommend that those making triage decisions not be involved in direct patient care, but only 2 (7.7%) require that their decisions be blinded to ethically irrelevant considerations., Limitation: The results may not be generalizable to institutions without academic bioethics programs., Conclusion: Over one half of respondents did not have ventilator triage policies. Policies have substantial heterogeneity, and many omit guidance on fair implementation., Primary Funding Source: None.

In all of medicine, there is perhaps nothing so distressing as bearing witness to a patient's suffering, especially if that patient is a child. We want to do everything that we can to avoid or alleviate a child's suffering, yet what do clinicians, ethicists, lawyers, or family members mean when they use the term "suffering," and how should these claims of suffering factor into pediatric decision-making? This question of suffering and what to do about it has played a key role in several prominent pediatric cases over the past decade, including the cases of Charlie Gard, Alfie Evans, and Baby Joseph. These cases have become seminal cases precisely because there is no clear resolution, and the "suffering child" continues to challenge our moral ideals of what it means to live a good life. In this article, I explore the various ways in which the concept of suffering is used in these cases, and I offer new ways in which parents, providers, and all those who work with sick children can approach the suffering child., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The author has indicated she has no potential conflicts of interest to disclose., (Copyright © 2020 by the American Academy of Pediatrics.)

Charlie Gard (August 4, 2016, to July 28, 2017) was an infant in the United Kingdom who was diagnosed with an encephalopathic form of mitochondrial DNA depletion syndrome caused by a mutation in the RRM2B gene. Charlie's parents raised £1.3 million (∼$1.6 million US) on a crowdfunding platform to travel to New York to pursue experimental nucleoside bypass treatment, which was being used to treat a myopathic form of mitochondrial DNA depletion syndrome caused by mutations in a different gene (TK2). The case made international headlines about what was in Charlie's best interest. In the medical ethics community, it raised the question of whether best interest serves as a guidance principle (a principle that provides substantive directions as to how decisions are to be made), an intervention principle (a principle specifying the conditions under which third parties are to intervene), both guidance and intervention, or neither. I show that the United Kingdom uses best interest as both guidance and intervention, and the United States uses best interest for neither. This explains why the decision to withdraw the ventilator without attempting nucleoside bypass treatment was the correct decision in the United Kingdom and why the opposite conclusion would have been reached in the United States., Competing Interests: POTENTIAL CONFLICTS OF INTEREST: The author has indicated she has no potential conflicts of interest to disclose., (Copyright © 2020 by the American Academy of Pediatrics.)

In a crisis, societal needs take precedence over a patient's best interests. Triage guidelines, however, differ on whether limited resources should focus on maximizing lives or life-years. Choosing between these two approaches has implications for neonatology. Neonatal units have ventilators, some adaptable for adults. This raises the question of whether, in crisis conditions, guidelines for treating extremely premature babies should be altered to free-up ventilators. Some adults who need ventilators will have a survival rate higher than some extremely premature babies. But surviving babies will likely live longer, maximizing life-years. Empiric evidence demonstrates that these babies can derive significant survival benefits from ventilation when compared to adults. When "triaging" or choosing between patients, justice demands fair guidelines. Premature babies do not deserve special consideration; they deserve equal consideration. Solidarity is crucial but must consider needs specific to patient populations and avoid biases against people with disabilities and extremely premature babies.

Except for such rare situations where it might be determined absence of physician's imputability, physicians cannot ̳save the most lives while respecting the legal rights of the patient' without violating the overarching principle ̳every human life has equal value'. Arguing to the contrary is a conscious hypocritical attitude, or in other words, a fiction. Medical law and ethics long since carry with its various fictions. Furthermore, in a public health emergency such as the current COVID-19 crisis, medical law and ethics change and shift the focus from the patient-centered model towards the public health-centered model. Under these particular circumstances, this fiction becomes striking, and it can no longer be swept under the rug. As health emergencies can happen anywhere, anytime, the patient prioritization in circumstances of limited resources should be accepted. Medical law and ethics should back away from strict commitment to placing paramount emphasis on the value of human life. It is time for medical law and ethics to leave taboo-related hypocritical attitudes, and venture to make a historic compromise. To do so, three principles should be met: subsidiarity, proportionality, and consensus and social proof.

Competing Interests: Competing interests: We have read and understood BMJ policy on declaration of interests and declare that JK is a site principal investigator for clinical trials with Eli Lilly and Novartis.

Progressive neuromuscular disease requires increasing degrees of respiratory support to sustain life. Each step from intermittent to continuous-and noninvasive to invasive-ventilation requires thoughtful consideration based on the goals of the patient and family, and the inherent benefits and burdens of the treatment. Tracheostomy, in particular, should not be viewed as an inevitable next step when less permanent or invasive methods prove insufficient. Like other modes of respiratory support, tracheostomy may represent a bridge to recovery of pulmonary function, or a stabilizing action in the hope that novel therapies may prove beneficial. In other situations, tracheostomy represents a destination therapy, necessitating consideration of the implications of chronic mechanical ventilation. Institutional, social, and financial considerations may affect decisions related to tracheostomy, as may implicit bias regarding quality of life. The complexity of such care and decisions highlight the need for optimal palliative care throughout the patient's life., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Background: Noninvasive mechanical ventilation (NIV) is an effective treatment in patients with neuromuscular diseases (NMD) to improve symptoms, quality of life, and survival., Summary: NIV should be used early in the course of respiratory muscle involvement in NMD patients and its requirements may increase over time. Therefore, training on technical equipment at home and advice on problem solving are warranted. Remote monitoring of ventilator parameters using built-in ventilator software is recommended. Telemedicine may be helpful in reducing hospital admissions. Anticipatory planning and palliative care should be carried out to lessen the burden of care, to maintain or withdraw from NIV, and to guarantee the most respectful management in the last days of NMD patients' life. Key Message: Long-term NIV is effective but challenging in NMD patients. Efforts should be made by health care providers in arranging a planned transition to home and end-of-life discussions for ventilator-assisted individuals and their families., (© 2019 S. Karger AG, Basel.)

In the Netherlands, an increasing number of patients are dependent on domiciliary ventilation. General practitioners and elderly care physicians caring for these patients are increasingly confronted with problems related to chronic ventilation. Most patients die due to progression of respiratory failure, however, patients may ask their physician to electively withdraw their assisted ventilation. According to the Dutch Medical Treatment Contracts Act, withdrawal of domiciliary ventilation at the request of a patient constitutes normal medical care and concerns neither the assessment of, nor the compliance with, a request for euthanasia. Currently, there is no Dutch guidance or guideline containing practical advice regarding the medical, ethical, organisational and supportive aspects of withdrawal of domiciliary ventilation. This paper addresses the planning necessary for the patient and between treating professionals, for the organisation and implementation of withdrawal of domiciliary ventilation at the patient's home, a nursing home or hospice.

The special nature of amyotrophic lateral sclerosis (ALS) and tracheostomy with invasive ventilation (TIV) leads to challenges that can be difficult in two senses: not only to handle well, but also to discuss with patients and other involved stakeholders. Because of the delicate nature of interpersonal relations and communication in ALS, some of the downsides to TIV may almost take on a nature of taboo, making them difficult to raise for open discussion. Yet these ethical challenges are important to be aware of, not only for health professionals and managers but, arguably, also for patients and next of kin. They are important also for a wider professional and societal debate about whether and to whom TIV should be offered. In this paper we highlight and examine ethical challenges in TIV for ALS, with a special emphasis on those that are hard to discuss openly and that therefore might fail to be addressed. The analysis is structured by the four core principles of healthcare ethics: beneficence, nonmaleficence, respect for patient autonomy, and justice.

Decision making in advanced Amyotrophic Lateral Sclerosis (ALS) patients keeps on being a controversial issue. The aim of this work is to discuss ethical implications of withdrawing respiratory support treatment in patients with ALS. Through a bibliographic search on Pubmed database (2010-2016) we investigated whether or not the use of Non-Invasive Ventilation (NIV) and Mechanical Ventilation (MV) would increase survival and quality of life. We included 38 review articles. From these papers, results and ethical implications of initiating and mainly withdrawing respiratory support were analyzed. Survival time increased with NIV and with MV. Quality of life, above all according to physiological criteria, improved with NIV but regarding MV it remained controversial. Implementation and future withdrawal of MV seemed open to medical and ethical discussion. From a perspective of the intrinsic dignity of every human being, whatever its quality of life was, and knowing that no effective therapies for the underlying disease are available, the decision to remove MV in a patient with advanced ALS requires: knowledge of the will of the patient and, above all, evaluating whether this respiratory support measure is becoming objectively disproportionate.

Objectives: Interhospital transfer, a common intervention, may be subject to healthcare disparities. In mechanically ventilated patients with sepsis, we hypothesize that disparities not disease related would be found between patients who were and were not transferred., Design: Retrospective cohort study., Setting: Nationwide Inpatient Sample, 2006-2012., Patients: Patients over 18 years old with a primary diagnosis of sepsis who underwent mechanical ventilation., Interventions: None., Measurements and Main Results: We obtained age, gender, length of stay, race, insurance coverage, do not resuscitate status, and Elixhauser comorbidities. The outcome used was interhospital transfer from a small- or medium-sized hospital to a larger acute care hospital. Of 55,208,382 hospitalizations, 46,406 patients met inclusion criteria. In the multivariate model, patients were less likely to be transferred if the following were present: older age (odds ratio, 0.98; 95% CI, 0.978-0.982), black race (odds ratio, 0.79; 95% CI, 0.70-0.89), Hispanic race (odds ratio, 0.79; 95% CI, 0.69-0.90), South region hospital (odds ratio, 0.79; 95% CI, 0.72-0.88), teaching hospital (odds ratio, 0.31; 95% CI, 0.28-0.33), and do not resuscitate status (odds ratio, 0.19; 95% CI, 0.15-0.25)., Conclusions: In mechanically ventilated patients with sepsis, we found significant disparities in race and geographic location not explained by medical diagnoses or illness severity.

Background: Many critically ill patients who die will do so after a decision has been made to withhold/withdraw life-sustaining therapy. The objective of this study was to document the characteristics of ICU patients with a decision to withhold/withdraw life-sustaining treatment, including the types of supportive treatments used, patterns of organ dysfunction, and international differences, including gross national income (GNI)., Methods: In this observational cohort study conducted in 730 ICUs in 84 countries, all adult patients admitted between May 8, 2012, and May 18, 2012 (except admissions for routine postoperative surveillance), were included., Results: The analysis included 9,524 patients, with a hospital mortality of 24%. A decision to withhold/withdraw life-sustaining treatment was reported during the ICU stay in 1,259 patients (13%), including 820 (40%) nonsurvivors and 439 (5%) survivors. Hospital mortality in patients with a decision to withhold/withdraw life-sustaining treatment was 69%. The proportion of deaths in patients with a decision to withhold/withdraw life-sustaining treatment ranged from 10% in South Asia to 67% in Oceania. Decisions to withhold/withdraw life-sustaining treatment were less frequent in low/lower-middle GNI countries than in high GNI countries (6% vs 14%; P < .001). Greater disease severity, presence of ≥ 2 organ failures, severe comorbidities, medical and trauma admissions, and admission from the ED or hospital floor were independent predictors of a decision to withhold/withdraw life-sustaining treatment., Conclusions: There is considerable worldwide variability in decisions to withhold/withdraw life-sustaining treatments. Interestingly, almost one-third of patients with a decision to withhold/withdraw life-sustaining treatment left the hospital alive., (Copyright © 2017 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.)

Lung transplantation (LTx) has become an accepted treatment for carefully selected patients with end-stage lung disease. Critical care issues have gained importance concerning bridging of candidates by mechanical respiratory support and are involved in the care after transplantation. The nature of respiratory support varies from oxygen supply and noninvasive ventilation, to mechanical respiratory support either by mechanical ventilation and/or extracorporeal life support. Recent innovations in extracorporeal life support technology have resulted in its more widespread use. Retrospective studies have demonstrated promising outcomes in candidates on mechanical respiratory support as a bridge to lung transplantation. The role of mechanical respiratory support has influenced the selection criteria for LTx, although bridging remains technically and ethically challenging. Critical care is integral to manage and prevent postoperative complications of LTx. Primary graft dysfunction and prolonged mechanical ventilation are major obstacles to hospital survival after LTx. Clear evidence is lacking on how to ventilate and optimally manage patients after LTx. Prolonged extracorporeal life support after LTx may improve outcome in selected patients with a primary graft dysfunction., (Copyright © 2016 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.)

Purpose: Terminal extubation (TE) and terminal weaning (TW) are the methods available for withdrawing mechanical ventilation. Perceptions of TE and TW by intensive care unit (ICU) staff may influence bedside practices and the feasibility of studies comparing these methods., Methods: From January to June 2013, 5 nurses and 5 physicians in each of 46 (out of 70, 65.7 %) French ICUs completed an anonymous self-questionnaire. Clusters of staff members defined by perceptions of TE and TW were identified by exploratory analysis. Denominators for computing percentages were total numbers of responses to each item; cases with missing data were excluded for the relevant item., Results: Of the 451 (98 %) participants (225 nurses and 226 physicians), 37 (8.4 %) had never or almost never performed TW and 138 (31.3 %) had never or almost never performed TE. A moral difference between TW and TE was perceived by 205 (45.8 %) participants. The exploratory analysis identified three clusters defined by personal beliefs about TW and TE: 21.2 % of participants preferred TW, 18.1 % preferred TE, and 60.7 % had no preference. A preference for TW seemed chiefly related to unfavorable perceptions or insufficient knowledge of TE. Staff members who preferred TE and those with no preference perceived TE as providing a more natural dying process with less ambiguity., Conclusion: Nearly two-fifths of ICU nurses and physicians in participating ICUs preferred TW or TE. This finding suggests both a need for shared decision-making and training before performing TE or TW and a high risk of poor compliance with randomly allocated TW or TE.

Aim: Following the elective ventilation and referral for organ donation of an infant with anencephaly, we sought local perinatal professionals' views of this practice., Methods: Anonymous online survey: demographics, ethical viewpoints and potential public/maternal perceptions (standard 5-part Likert scale and free text)., Demographics: 49 replies (38 female): 4 obstetricians, 14 neonatologists, 6 foetal clinicians, 23 nurses, 1 anaesthetist and 1 reproductive specialist., Experience: 0.5-33 years (average 12). Twenty-one had experience of anencephalic delivery, and 10 reported pregnancy continued for religious reasons., Ethics: (i) 73% thought anencephalic donation acceptable, of which 64% supported elective ventilation, 20% neutral and 16% disagreed. (ii) Provision of treatments not in infant's strict best interest to facilitate donation: 22% strongly agreed, 36% agreed, 33% neutral and 9% disagreed. (iii) Accept ventilation to permit donation if societal benefit: 53% agreed, 33% neutral and 13% disagreed. (iv) Public opinion: 59% disagreed anencephalic donation would harm public opinion about donation and 19% agreed., Conclusion: We found a supportive local environment for donation in the setting of anencephaly, including support for elective ventilation. Given this, and our ethical analysis, we recommend provision of organ donation information as part of palliative care counselling for women carrying a foetus with a condition likely to be fatal in infancy., (©2015 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.)

Given the long-standing controversy about whether the brain-dead should be considered alive in an irreversible coma or dead despite displaying apparent signs of life, the ethical and policy issues posed when family members insist on continued treatment are not as simple as commentators have claimed. In this article, we consider the kind of policy that should be adopted to manage a family's insistence that their brain-dead loved one continues to receive supportive care. We argue that while it would be ethically inappropriate to continue to devote scarce acute care resources to such patients in a hospital setting, it may not be ethically inappropriate for patients to receive these resources in certain other settings. Thus, if a family insists on continuing to care for their brain-dead loved at their home, we should not, from a policy perspective, interfere with the family's wishes. We also argue that healthcare professionals should make some effort to facilitate the transfer of brain-dead patients to these other settings when families insist on continued treatment despite being informed about the lack of any potential for recovery of consciousness. Our arguments are strengthened by the fact that patients in a persistent vegetative state, who, when correctly diagnosed, also have no potential for recovery of consciousness, are routinely transferred from hospitals to nursing homes or long-term care facilities where they continue to be ventilated, tube fed and to receive other supportive care. We also briefly explore the question of who should be responsible for the costs of such treatment at the long-term care facility., (© 2015 John Wiley & Sons Ltd.)

Good communication is critical to the practice of medicine. This is particularly true when outcomes are unpredictable and/or patients lack the capacity to participate in medical decision making. Disputes may develop that cannot be addressed using basic communication skills. Conflict of this nature can burden patients, families, and medical staff and may result in increased suffering for all parties. Many physicians lack the necessary communication tools to handle difficult conversations. Training in bioethics mediation provides physicians with skills that can promote healing by empowering participants to engage in effective discourse and break down barriers to find common ground. Mediation training for physicians can expand their capacity to connect with patients and enhance their ability to identify potential conflict early on, in order to collaborate more effectively. Competency in the processes of negotiation and conflict resolution should therefore be seen as essential elements of medical training., (Copyright 2015 The Journal of Clinical Ethics. All rights reserved.)

Cardiopulmonary resuscitation of newborns with perinatal hypoxia faces serious ethical, moral, medical and legal problems, particularly in rural areas. Ethical and moral issues have to do with the medical-parents relationship; with values, preferences and priorities of each of these groups; and with the scarce resources situation. Medical-technical problems are related to asphyxia complications, and their prognostic and therapeutic implications. Legal considerations arising from the fact of killing or letting die. In this article is analyzed the real case of a neonate with severe perinatal hypoxia in order to enhance the understanding of the incorporation of ethics in everyday clinical practice.

The main, universal problem for transplantation is organ scarcity. The gap between offer and demand grows wider every year and causes many patients in waiting list to die. In Spain, 90% of transplants are done with organs taken from patients deceased in brain death but this has a limited potential. In order to diminish organ shortage, alternative strategies such as donations from living donors, expanded criteria donors or donation after circulatory death, have been developed. Nevertheless, these types of donors also have their limitations and so are not able to satisfy current organ demand. It is necessary to reduce family denial and to raise donation in brain death thus generalizing, among other strategies, non-therapeutic elective ventilation. As intensive care doctors, cornerstone to the national donation programme, we must consolidate our commitment with society and organ transplantation. We must contribute with the values proper to our specialization and try to reach self-sufficiency by rising organ obtainment., (Copyright © 2015 Elsevier España, S.L.U. and SEMICYUC. All rights reserved.)

Congenital central hypoventilation syndrome (CCHS) is a well-recognized disorder of the autonomic nervous system caused by mutations in the PHOX2B gene. The most characteristic feature is failure of ventilatory control, resulting in the need for respiratory support while asleep, and in some cases when awake also. Most cases present in infancy or early childhood. Technological advances allow patients with mild to moderate phenotypesto receive adequate support by non-invasive ventilation (NIV), or diaphragm pacing (or combination of the two) avoiding the need for long-term ventilation by tracheostomy. Daytime functioning of patients with CCHS who require sleep-time ventilation only is expected to be good, with some additional surveillance to ensure they don't accidentally fall asleep without respiratory support available. Some children with CCHS have other complications, such as Hirschprung's disease, learning difficulties, and cardiac arrhythmias (leading in some instances to heart block and the requirement for a pacemaker). In a few cases, patients can develop neurogenic malignancies. Parents bear a significant burden for the care of their child with CCHS including provision of NIV at home, close monitoring, and regular surveillance for complications. Information about patients with CCHS comes from databases in the United States and Europe, but these don't include infants or children for whom ventilator support was not offered. In this paper we use a case study to explore the ethical issues of provision of treatment, or non-treatment, of children with CCHS., (© 2014 Wiley Periodicals, Inc.)

One of the most difficult ethical dilemmas in pediatrics today arises when a child has complex chronic conditions that are not curable and cause discomfort with no prospect of any improvement on quality of life. In the context of medical futility, it is harmful to prolong medical treatment. The question is: How can medical treatment be discontinued when the child is not dependent on mechanical ventilation or ICU treatment? What is the appropriate palliative care and does it justify the use of sedatives or analgesics if this also might shorten life?, (Copyright © 2015 by the American Academy of Pediatrics.)

A first principle in ethics consultation is that reasoning is essential. A second principle is that the religious and cultural views of patients and their surrogates are usually respected. What can be done when these principles collide-when patients or surrogates have religious or cultural views and beliefs that clinicians find unreasonable or even offensive? Mediation may provide some approaches to assist us in providing the most ethically appropriate assistance., (Copyright 2014 The Journal of Clinical Ethics. All rights reserved.)

Introduction: Withholding life-sustaining treatments (WHLST) and withdrawing life-sustaining treatments (WDLST) occur in most intensive care units (ICUs) around the world to varying degrees., Methods: Speakers from invited faculty of the World Federation of Societies of Intensive and Critical Care Medicine Congress in 2013 with an interest in ethics were approached to participate in an ethics round table. Participants were asked if they agreed with the statement "There is no moral difference between withholding and withdrawing a mechanical ventilator." Differences between WHLST and WDLST were discussed. Official statements relating to WHLST and WDLST from intensive care societies, professional bodies, and government statements were sourced, documented, and compared., Results: Sixteen respondents stated that there was no moral difference between withholding or withdrawing a mechanical ventilator, 2 were neutral, and 4 stated that there was a difference. Most ethicists and medical organizations state that there is no moral difference between WHLST and WDLST. A review of guidelines noted that all but 1 of 29 considered WHLST and WDLST as ethically or legally equivalent., Conclusions: Most respondents, practicing intensivists, stated that there is no difference between WHLST and WDLST, supporting most ethicists and professional organizations. A minority of physicians still do not accept their equivalency., (Copyright © 2014 Elsevier Inc. All rights reserved.)

Parents generally have the right to make medical decisions for their children. This right can be challenged when the parents' decision seems to go against the child's interests. The toughest such decisions are for a child who will survive with physical and neurocognitive impairments. We discuss a case of a 5-year-old boy who suffered a spinal injury as a result of a motor vehicle accident and whose father requests discontinuation of life support. Many experts recommend a "trial of therapy" to clarify both prognosis and quality of life. The key ethical question, then, is not whether to postpone a decision to forego mechanical ventilation. Instead, the key question is how long to wait. Parents should be allowed time to see what life will be like for themselves and for their child. Most of the time, life turns out better than they might have imagined. Comments are provided by 2 pediatric intensivists, Drs William Novotny and Ronald Perkin of East Carolina University, and by a specialist in rehabilitation, Dr Debjani Mukherjee of the Rehabilitation Institute of Chicago., (Copyright © 2014 by the American Academy of Pediatrics.)

We describe and analyze 13 cases handled by our ethics consultation service (ECS) in which families requested continuation of physiological support for loved ones after death by neurological criteria (DNC) had been declared. These ethics consultations took place between 2005 and 2013. Patients' ages ranged from 14 to 85. Continued mechanical ventilation was the focal intervention sought by all families. The ECS's advice and recommendations generally promoted "reasonable accommodation" of the requests, balancing compassion for grieving families with other ethical and moral concerns such as stewardship of resources, professional integrity, and moral distress. In cases we characterized as finite-goal accommodation, a "reasonable accommodation" strategy proved effective in balancing stakeholders' interests and goals, enabling steady progress toward resolution. When a family objected outright to a declaration of DNC and asked for an indefinite accommodation, the "reasonable accommodation" approach offered clinicians little practical direction, and resolution required definitive action by either the family or the clinical team. Based on our analysis and reflections on these 13 cases, we propose ethically justified and practical guidelines to assist healthcare professionals, administrators, and ECSs faced with similar cases., (Copyright 2014 The Journal of Clinical Ethics. All rights reserved.)

Extracorporeal life support (ECLS) is an artificial means of maintaining adequate oxygenation and carbon dioxide elimination to enable injured lungs to recover from underlying disease. Technological advances have made ECLS devices smaller, less invasive, and easier to use. ECLS might, therefore, represent an important step towards improved management and outcomes of patients with acute respiratory distress syndrome. Nevertheless, rigorous evidence of the ability of ECLS to improve short-term and long-term outcomes is needed before it can be widely implemented. Moreover, how to select patients and the timing and indications for ECLS in severe acute respiratory distress syndrome remain unclear. We describe the physiological principles, the putative risks and benefits, and the clinical evidence supporting the use of ECLS in patients with acute respiratory distress syndrome. Additionally, we discuss controversies and future directions, such as novel technologies and indications, mechanical ventilation of the native lung during ECLS, and ethics considerations., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

Parental requests for gastrostomies, tracheostomies, or assisted ventilation in children with profound disabilities raise ethical concerns about children's interests, parental decision-making, and health care costs. The underlying concern for many relates to the perceived value of these children. Clinicians should make efforts to appreciate the family's perspective regarding children with profound disabilities who require respiratory and nutritional medical support. Finding opportunities to learn about the family members' lives outside of the health care setting may facilitate a deeper understanding of what it means to live with a child who has profound disabilities. In conversations with families, referring to interventions as futile and conditions as lethal will obscure the value-based nature of these decisions. Respiratory and nutritional interventions are not clearly against the interests of most children. Even for children with a limited life span, life-sustaining interventions may be important for the child and family. Health care costs are a serious societal issue; however, the costs associated with profound disabilities are not the most significant contributor. Societal decisions not to provide life-sustaining health care to children with profound disabilities would require a public process. Clinicians may have personal views regarding decisions for their own family or for their vision for society. However, clinicians have professional obligations to families who have different values. It is important to present balanced information and support parental decision-making so parents may decide to forgo or use life-sustaining interventions according to their values and goals.

Medical advances over the past 50 years have helped countless patients with advanced cardiac disease or who are critically ill in the intensive care unit (ICU), but have added to the ethical complexity of the care provided by clinicians, particularly at the end of life. Palliative care has the primary aim of improving symptom burden, quality of life, and the congruence of the medical plan with a patient's goals of care. This article explores ethical issues encountered in the cardiac ICU, discusses key analyses of these issues, and addresses how palliative care might assist medical teams in approaching these challenges., (Copyright © 2013 Elsevier Inc. All rights reserved.)

One of the most difficult decisions that doctors and parents must make is the decision to withdraw life-sustaining treatment. Doctors find it easier to withdraw treatments in situations where withdrawal will be rapidly fatal rather than in situations in which treatment withdrawal will lead to a prolonged dying process. Mechanical ventilation is usually such a treatment. Withdrawal of ventilation generally leads to the patient's rapid demise. Doctors may tell parents that death will occur quickly after a ventilator is withdrawn. But what happens when the doctors are wrong and a patient survives without life support? What should doctors do next? We present a case in which that happened and asked 3 experts to comment on the case. Stefan Kutzsche is a senior consultant in neonatology at Oslo University Hospital Ulleval in Norway. John Colin Partridge is a neonatologist and professor of pediatrics at University of California, San Francisco. Steven R. Leuthner is a neonatologist and professor of pediatrics and bioethics at the Medical College of Wisconsin. They each recommend slightly different approaches to this dilemma.

Question Under Study: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease with a poor prognosis. Survival and quality of life of ALS patients have improved through the implementation of multidisciplinary approaches, the use of percutaneous gastrostomy and of noninvasive (NIV) or invasive ventilation. The question of whether or not to propose invasive ventilation (by tracheostomy: TPPV) to ALS patients remains a matter of debate., Methods: The study reviews the medical literature, the practice in three Swiss and two large French ALS expert centres and reports the results of a workgroup on invasive ventilation in ALS., Results: Improved management of secretions and use of different interfaces allows NIV to be used 24-hours-a-day for prolonged periods, thus avoiding TPPV in many cases. TPPV is frequently initiated in emergency situations with lack of prior informed consent. TPPV appears associated with a lesser quality of life and a higher risk of institutionalisation than NIV. The high burden placed on caregivers who manage ALS patients is a major problem with a clear impact on their quality of life., Conclusions: Current practice in Switzerland and France tends to discourage the use of TPPV in ALS. Fear of a "locked-in syndrome", the high burden placed on caregivers, and unmasking cognitive disorders occurring in the evolution of ALS are some of the caveats when considering TPPV. Most decisions about TPPV are taken in emergency situations in the absence of advance directives. One exception is that of young motivated patients with predominantly bulbar disease who "fail" NIV.

Providing critical care to cancer patients requires a high degree of practical multidisciplinary teamwork between intensivists and cancer specialists. Intensivists should have a solid basic knowledge of malignant diseases as well as of the typical complications of the underlying illness and its therapies. Hemato-oncologists should evaluate the transfer of these patients to the intensive care unit early in the course of emerging organ dysfunctions. Both parties should have a realistic impression of the short-term intensive care and long-term oncologic options and perspectives of the respective patient. Good cooperation between intensivists and cancer specialists is the basis for meaningful decisions on admission, planning of individual therapeutic aims, successful patient management, and tailored therapy, with a smooth transition into a palliative care setting whenever appropriate.

The chronic worldwide lack of organs for transplantation and the continuing improvement of strategies for in situ organ preservation have led to renewed interest in elective non-therapeutic ventilation of potential organ donors. Two types of situation may be eligible for elective intensive care: patients definitely evolving towards brain death and patients suitable as controlled non-heart beating organ donors after life-supporting therapies have been assessed as futile and withdrawn. Assessment of the ethical acceptability and the risks of these strategies is essential. We here offer such an ethical assessment using the four principles of medical ethics of Beauchamp and Childress applying them in their broadest sense so as to include patients and their families, their caregivers, other potential recipients of intensive care, and indeed society as a whole. The main ethical problems emerging are the definition of beneficence for the potential organ donor, the dilemma between the duty to respect a dying patient's autonomy and the duty not to harm him/her, and the possible psychological and social harm for families, caregivers other potential recipients of therapeutic intensive care, and society more generally. Caution is expressed about the ethical acceptability of elective non-therapeutic ventilation, along with some proposals for precautionary measures to be taken if it is to be implemented.

This paper examines questions concerning elective ventilation, contextualised within English law and policy. It presents the general debate with reference both to the Exeter Protocol on elective ventilation, and the considerable developments in legal principle since the time that that protocol was declared to be unlawful. I distinguish different aspects of what might be labelled elective ventilation policies under the following four headings: 'basic elective ventilation'; 'epistemically complex elective ventilation'; 'practically complex elective ventilation'; and 'epistemically and practically complex elective ventilation'. I give a legal analysis of each. In concluding remarks on their potential practical viability, I emphasise the importance not just of ascertaining the legal and ethical acceptability of these and other forms of elective ventilation, but also of assessing their professional and political acceptability. This importance relates both to the successful implementation of the individual practices, and to guarding against possible harmful effects in the wider efforts to increase the rates of posthumous organ donation.