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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 2017, the court case over medical treatment of UK infant, Charlie Gard, reached global attention. In this article, I will analyze one of the more distinctive elements of the case. The UK courts concluded that treatment of Charlie Gard was not in his best interests and that it would be permissible to withdraw life-sustaining treatment. However, in addition, the court ruled that Charlie should not be transferred overseas for the treatment that his parents sought, even though specialists in Italy and the US were willing to provide that treatment. Is it ethical to prevent parents from pursuing life-prolonging treatment overseas for their children? If so, when is it ethical to do this? I will outline arguments in defense of obstructing transfer in some situations. I will argue, however, that this is only justified if there is good reason to think that the proposed treatment would cause harm., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The author has indicated he has no potential conflicts of interest to disclose., (Copyright © 2020 by the American Academy of Pediatrics.)

With the arrival of the COVID-19 pandemic, the risk of a possible lack of care for the elderly in nursing homes became evident. We summarize the experience of a multidisciplinary team with volunteer professionals from different specialties who carried out support for healthcare professionals in nursing homes. This team was implemented from both Primary and Specialty Care managements. Its work paradigm was proposed by our home hospitalization team, which included direct care of the most complex patients and general counselling on isolation, hygiene and preventive measures within the nursing homes. Thanks to this support, the elderly population placed there, with suspected or diagnosed COVID-19, received adequate care from an interdisciplinary team, which led part of the pressure to be released from their professional workers, and many family members were aware that there was no neglect of the elderly. Commitment from various levels of care in a coordinated effort has prevented a vulnerable population from being left unattended during the pandemic.

We investigated the differences in Japanese and United States medical and legal professional opinions on ethical support for clinical ethical issues using the refusal of blood transfusions on the grounds of religious principles as an example of a clinical ethical issue. In ethical support systems for medical institutions in Japan, 95.0% of "clinical training designation hospitals" have hospital ethics committees, and 63.1% have medical safety divisions; clinical ethical support is provided in accordance with their scale and function. In terms of clinical ethical support limits the discretion of physicians, 59.2% of lawyers responded "No" and 54.4% of doctors responded "Yes". In addition, on the feasibility of government or academic guidelines in clinical practice, 37.7% of lawyers responded "Yes" and 63.0% of doctors responded "No". In terms of "relative transfusion-free" policy, 83.2% of lawyers and 76.8% of doctors responded that it is "unavoidable," while 81.6% of U.S. committee heads responded that it is a "violation of rights." In terms of hospital transfers due to a hospital being unable to treat patients refusing blood transfusion, 62.6% of lawyers reported that it is "unavoidable" while 57.1% of U.S. committee heads reported that it "should be avoided". The results of this study indicate that medical and legal professionals and U.S. ethics committee heads recognize clinical ethical issues in slightly different ways., Competing Interests: The author has no conflicts of interest to disclose.

Objectives: Our understanding of care transitions from hospital to home is incomplete. Malpractice claims are an important and underused data source to understand such transitions. We used malpractice claims data to (1) evaluate safety risks during care transitions and (2) help develop care transitions planning tools and pilot test their ability to evaluate care transitions from the hospital to home., Methods: Closed malpractice claims were analyzed for 230 adult patients discharged from 4 hospital sites. Stakeholders participated in 2 structured focus groups to review concerns. This led to the development of 2 care transitions planning tools-one for patients/caregivers and one for frontline care providers. Both were tested for feasibility on 53 patient discharges., Results: Qualitative analysis yielded 33 risk factors corresponding to hospital work system elements, care transitions processes, and care outcomes. Providers reported that the tool was easy to use and did not adversely affect workflow. Patients reported that the tool was acceptable in terms of length and response burden. Patients were often still waiting for information at the time they applied the tool., Conclusions: Malpractice claims provided insights that enriched our understanding of suboptimal care transitions and guided the development of care transitions planning tools. Pilot testing suggested that the tools would be feasible for use with minor adjustment. The malpractice data can complement other approaches to characterize systems failures threatening patient safety.

This series of personal stories about hospital discharge experiences expose how fraught this transition can be. Not only do the authors reveal personal angst, feelings of endangerment, frank safety problems, lack of structural supports, but even more concerning are their perceptions of callous disregard, lack of adequate preparation and education, and unilateral decision-making by the health care teams. The "invisible hand" of our corporate health care system percolates, with some authors questioning whether the health professionals are advocating for their (i.e., the patient's) best interest or the best interest of their institution. There are also some shining examples though-moments when a health care team member takes the time, listens, problem-solves, advocates and expresses concern. In this commentary I will explore common themes in the narratives, and conclude with some suggestions-some simple, others aspirational, for how to make the discharge process more patient-centered and less traumatic for all moving forward.

Hospitalization is a distressing time for patients and their care partners. While in the hospital, they are often thinking about how they will manage their healthcare once they leave the hospital. The hospital providers are tasked with conducting discharge planning with the patient and their care partners to ensure a smooth transition from the hospital. However, as the narratives in this symposium illustrate, the patients and their care partners often feel too little attention paid to ensuring their unique needs are met, including their preferences for where they go when they leave the hospital. Patients and their care partners desire increased and improved communication with healthcare providers, including those in the hospital as well as insurers, as they attempt to take control of their discharge through self-advocacy. While these are three common themes across the stories, the authors share a variety of views, circumstances, and opinions that speak to the variability in patients' discharge experiences and preferences.

Rationale: Patients repatriated from foreign hospitals are sources of extensively drug-resistant (XDR) bacteria outbreaks. Thus, an individual benefit potential for the patient opposes a collective ecological risk potential. These ethical issues have not been well studied., Patient Concerns: We report the case of a 74-year-old patient repatriated from Mauritius to the French island of Reunion who presented mesenteric infarction evolving over several days, and who suffered a cardiac arrest before transfer., Diagnoses: In Reunion Island, a CT-scan revealed a multisegmental enlarged parietal enlargement associated with free peritoneal effusion and a suboccluded aspect of the superior mesenteric artery., Interventions: Surgical exploration showed a severe mesenteric infarction with peritonitis, and a resection of 120cm of the small intestine was conducted. This patient was infected with a vanA glycopeptide-resistant Enterococcus faecium and a carbapenem-resistant Klebsiella pneumoniae which produced carbapenemases NDM-1 and OXA-181, which required specific care and could have led to a local epidemic., Outcomes: The patient died after 9 days after being admitted to the ICU., Lessons: Repatriation of critically ill patients from abroad should be considered according to ethical criteria, evaluating, if possible, the expected benefits, and ecological risks incurred. Limiting unnecessary transfers could be an effective measure to limit the spread of XDR bacteria.

Ethics guidance increasingly recognises that researchers and sponsors have obligations to consider provisions for post-trial access (PTA) to interventions that are found to be beneficial in research. Yet, there is little information regarding whether and how such plans can actually be implemented. Understanding practical experiences of developing and implementing these plans is critical to both optimising their implementation and informing conceptual work related to PTA. This viewpoint is informed by experiences with developing and implementing PTA plans for six large-scale multicentre HIV prevention trials supported by the HIV Prevention Trials Network. These experiences suggest that planning and implementing PTA often involve challenges of planning under uncertainty and confronting practical barriers to accessing healthcare systems. Even in relatively favourable circumstances where a tested intervention medication is approved and available in the local healthcare system, system-level barriers can threaten the viability of PTA plans. The aggregate experience across these HIV prevention trials suggests that simply referring participants to local healthcare systems for PTA will not necessarily result in continued access to beneficial interventions for trial participants. Serious commitments to PTA will require additional efforts to learn from future approaches, measuring the success of PTA plans with dedicated follow-up and further developing normative guidance to help research stakeholders navigate the complex practical challenges of realising PTA., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

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.

A significant issue affecting the healthcare system across Ontario is the number of patients admitted to hospitals that are then subsequently being designated alternate level of care (ALC). In 2016, 14.5% of Ontario in-patient beds were occupied by ALC-designated patients. Contributing to this phenomenon are ethical errors that can affect decision-making around discharge. Since 2012, William Osler Health System has redesigned their discharge process to eliminate ethical errors and align more fully with the Health Care Consent Act (HCCA) and the Public Hospitals Act (PHA). Through quality improvement processes including the use of scripting, education, checklists, mentoring and role clarity, Osler's ALC days are currently the lowest in the province of Ontario. The elimination of such errors also decreased patient confusion and improved the discharge experience.

The PoET (Prevention of Error-based Transfers) Project is one of the Ethics Quality Improvement Projects (EQIPs) taking place at William Osler Health System. This specific project is designed to reduce transfers from long-term care to hospital that are caused by legal and ethical errors related to consent, capacity and substitute decision-making. The project is currently operating in eight long-term care homes in the Central West Local Health Integration Network and has seen a 56% reduction in multiple transfers before death in hospital.

Background: In Ontario, Canada, patients who lack decision-making capacity and have no family or friends to act as substitute decision-makers currently rely on the Office of the Public Guardian and Trustee to consent to long-term care (nursing home) placement, but they have no legal representative for other placement decisions., Objectives: We highlight the current gap in legislation for difficult transition cases involving unrepresented patients and provide a novel framework for who ought to assist with making these decisions and how these decisions ought to be made., Research Design: This paper considers models advanced by Volpe and Steinman with regard to who ought to make placement decisions for unrepresented patients, as well as current ethical models for analyzing how these decisions should be made., Participants and Research Context: We describe an anonymized healthcare transition case to illustrate the fact that there is no legally recognized decision-maker for placement destinations other than long-term care facilities and to show how this impacts all stakeholders., Ethical Considerations: The case provided is an anonymized vignette representing a typical transition case involving an unrepresented patient., Findings: As a result of a gap in provincial legislation, healthcare providers usually determine the appropriate placement destination without a clear framework to guide the process and this can cause significant moral distress., Discussion: We argue for a team decision-making approach in the short term, and a legislative change in the long-term, to respect the patient voice, evaluate benefit and risk, enhance collaboration between healthcare providers and patients, and promote social justice. We believe that our approach, which draws upon the strengths of interprofessional teams, will be of interest to all who are concerned with the welfare and ethical treatment of the patients for whom they care., Conclusions: One of the main strengths of our recommendation is that it provides all members of the healthcare team (including nurses, social workers, therapists, and others) an increased opportunity to advocate on behalf of unrepresented patients., (© The Author(s) 2015.)

Transferring a patient undergoing an allogeneic stem cell transplantation to the intensive care unit (ICU) is always a challenging situation on a medical and psychological point of view for the patient and his relatives as well as for the medical staff. Despite the progress in hematology and intensive care during the last decade, the prognosis of these patients admitted to the ICU remains poor and mortality is around 50 %. The harmonization working party of the SFGM-TC assembled hematologists and intensive care specialist in order to improve conditions and modalities of the transfer of a patient after allogeneic stem cell transplantation to the ICU. We propose a structured medical form comprising all essential information necessary for optimal medical care on ICU., (Copyright © 2016. Published by Elsevier Masson SAS.)

Children often require transfer to pediatric hospital emergency departments (EDs) after evaluation in community hospital EDs. Such transfers are regulated by the federal Emergency Medical Treatment and Labor Act. Unusual circumstances, such as logistical errors in the physical transfer of the patient, may increase Emergency Medical Treatment and Labor Act-related liability risks for hospitals and ED physicians.

Numerous studies have shown that intensity-modulated radiation therapy is the standard technique for the radiation treatment of head and neck cancers. Intensity-modulated radiation therapy reduces side effects (xerostomia, dysphagia, fibrosis, etc.) and improves the results for cancer localizations with highly complex shapes such as the cavum or nasal cavity. Intensity-modulated radiation therapy is also a costly technique that necessitates a numerous staff, highly trained, with regular practice. If this technique cannot be available (understaffing, overwork, etc.) the choice between entrusting the patient to a colleague and treating the patient with a less sophisticated technique such as 3-dimensional conformal radiation therapy depends on different objective and ethical criteria., (Copyright © 2014 Société française de radiothérapie oncologique (SFRO). Published by Elsevier SAS. All rights reserved.)

This paper argues that the type of conscience claims made in last decade's spate of cases involving pharmacists' objections to filling birth control prescriptions and cases such as Ms. Means and Mercy Health Partners of Michigan, and even the Affordable Care Act and the Little Sisters of the Poor, as different as they appear to be from each other, share a common element that ties them together and makes them fundamentally different in kind from traditional claims of conscience about which a practical consensus emerged in the 1980s and 1990s. This difference in kind is profoundly significant; so much so, we contend, that it puts them at odds with the normative basis for protecting conscience claims in United States health care settings in the first place, making them illegitimate. Finally, we argue that, given the illegitimacy of these contemporary claims of conscience, physicians and other health professionals must honor their well-established standing obligations to provide informed consent and refer or transfer care even if the service requested or needed is at odds with their own core moral beliefs-a requirement that is in line with the aforementioned practical consensus on traditional claims of conscience.

The authors review the history and motivations behind medical repatriation, the transfer of undocumented patients in need of subacute care to their country of origin. They argue that involuntary medical repatriation violates the ethical duties of health care providers.

We know that errors related to consent, capacity and substitute decision-making can lead to transfers from long-term care to hospital that seniors do not want and cannot benefit from. Three ethics quality improvement projects were launched to minimize errors in decision-making to work towards providing care residents want and can benefit from. We learned that there is a systemic barrier, namely the level-of-care form that undermines the efforts made by long-term care staff to meet their ethical and legal obligations. Because of the use of these forms, residents can receive treatment that they do not want or could not benefit from, including transfer to hospital., (Copyright © 2014 Longwoods Publishing.)

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.

Intensive care units (ICUs) are not always able to admit all patients who would benefit from intensive care. Pressure on ICU beds is likely to be particularly high during times of epidemics such as might arise in the case of swine influenza. In making choices as to which patients to admit, the key US guidelines state that significant priority should be given to the interests of patients who are already in the ICU over the interests of patients who would benefit from intensive care but who have not been admitted. We examine four reasons that in principle might justify such a prioritization rule and conclude that none is convincing. We argue that the current location of patients should not, in principle, affect their priority for intensive care. We show, however, that under some but not all circumstances, maximizing lives saved by intensive care might require continuing to treat in the ICU a patient already admitted rather than transferring that patient out of the unit in order to admit a sicker patient who would also benefit more from intensive care. We conclude that further modelling is required in order to clarify what practical policies would maximize lives saved by intensive care., (© 2010 Blackwell Publishing Ltd.)

Purpose of Review: Given increasingly scarce healthcare resources and highly differentiated hospitals, with growing demand for critical care, interhospital transfer is an essential part of the care of many patients. The purpose of this review is to examine the extent to which hospital quality is considered when transferring critically ill patients, and to examine the potential benefits to patients of a strategy that incorporates objective quality data into referral patterns., Recent Findings: Interhospital transfer of critically ill patients is now common and safe. Although extensive research has focused on which patients should be transferred and when they should be transferred, recent study has focused on where patients should be transferred. Yet, the choice of destination hospital is rarely recognized as a therapeutic choice with implications for patient outcomes. The recent public release of high-quality, risk-adjusted and reliability-adjusted outcome data for most hospitals now offers physicians an informed basis on which to choose to which destination hospital a patient should be transferred. A strategy of 'guided transfer' that integrates public quality information into critical care transfer decisions is now feasible., Summary: Although hospitals often transfer patients, there may be substantial room for improvement in transfer patterns. Guiding transfers on the basis of objective quality information may offer substantial benefits to patients, and could be incorporated into quality improvement initiatives.

Four individuals who teach ethics in dental schools comment on a case in which negative financial information is revealed by one dentist when transferring records of a potential patient to another dentist. All commentators find varying degrees of ethical problem with disclosing such information. Professional codes discourage this practice. All commentators stress the importance of the potential new dentist developing a relationship based on professional standards, with the greatest emphasis placed on the patient's health needs. Several of the commentators discuss positive ways of conducting a patient interview, including specific useful language.

A 28-year-old man with chronic granulomatous disease developed worsening respiratory status in the setting of chronic bacterial and fungal infections. The attending physician recommended transfer to the intensive care unit (ICU), but the patient declined. The patient understood that the nurses in the ICU have expertise in caring for patients with poor respiratory function. He also understood that he faced an increased risk of dying if he remained on the medical ward. At the same time, the patient was familiar with the nurses on the medical ward and felt comfortable there. Unsure of whether it was appropriate for clinicians to agree to provide less than optimal care for a critically ill patient, the clinicians on the medical ward requested a bioethics consultation. This article reviews the ethical issues that arise when patients ask clinicians to provide less than optimal care. Although it is well established that clinicians ought to respect patient autonomy, that obligation conflicted, in the present case, with the clinicians' sense of professional integrity. Future research on this vital but underexplored topic is needed to determine the extent to which clinicians' professional integrity places limits on the types of patient requests to which they should agree.

An elderly patient who underwent a complex emergency abdominal aneurysmectomy two weeks ago is in coma, ventilator dependent, and in severe multisystem organ failure with a deteriorating prognostic index score. The family has become increasingly hostile towards Dr S. Cold, the consultants, the ICU nurses, and the janitorial staff. An estranged wife has called once to defer decision-making to the children. Three children intermittently visit and are openly critical of the medical care. One child is an ICU nurse supervisor at a small local suburban hospital. Dr Cold spoke to the family yesterday about instituting DNR orders and discontinuing some supportive therapy that was not working. The family first required another consultation and then demanded that Dr Cold transfer the patient to the hospital where the daughter works. The hospital does not provide tertiary care. A physician there is willing to assume responsibility. How should Dr Cold respond? A. Do as they request. B. Refuse outright. C. Call the accepting physician and explain why the case is futile. D. Take the matter to the ethics committee to prevent transfer. E. Call the wife and children to schedule an exploratory family conference and insist they come to a decision.

Crowding is an increasingly common occurrence in hospital-based emergency departments (EDs) across the globe. This 2-article series offers an ethical and policy analysis of ED crowding. Part 1 begins with a discussion of terms used to describe this situation and proposes that the term "crowding" be preferred to "overcrowding." The article discusses definitions, measures, and causes of ED crowding and concludes that the inability to transfer emergency patients to inpatient beds and resultant boarding of admitted patients in the ED are among the root causes of ED crowding. Finally, the article identifies and describes a variety of adverse moral consequences of ED crowding, including increased risks of harm to patients, delays in providing needed care, compromised privacy and confidentiality, impaired communication, and diminished access to care. Part 2 of the series examines barriers to resolving the problem of ED crowding and strategies proposed to overcome those barriers.

As Catholic-owned hospitals merge with or take over other facilities, they impose restrictions on reproductive health services, including abortion and contraceptive services. Our interviews with US obstetrician-gynecologists working in Catholic-owned hospitals revealed that they are also restricted in managing miscarriages. Catholic-owned hospital ethics committees denied approval of uterine evacuation while fetal heart tones were still present, forcing physicians to delay care or transport miscarrying patients to non-Catholic-owned facilities. Some physicians intentionally violated protocol because they felt patient safety was compromised. Although Catholic doctrine officially deems abortion permissible to preserve the life of the woman, Catholic-owned hospital ethics committees differ in their interpretation of how much health risk constitutes a threat to a woman's life and therefore how much risk must be present before they approve the intervention.

Recent years have seen considerable advances in acute stroke treatment. Patients who survive the acute phase following major stroke often retain severe limitations of motor, cognitive, and communicative functions. In such patients whose death is imminent, curative therapies should be avoided. Instead, the goal of any therapy should shift to palliative treatment and concentrate on reducing causes of suffering. Palliative methodologies and concepts are already well established in neurology, e.g. for amytrophic lateral sclerosis. Particularly those stroke patients who remain stable for a long period with massive neurological deficits require interdisciplinary palliative care that goes beyond mere reduction of symptoms and seeks a response to possible complications and the question of maintaining life-preserving measures. Not only medical indications but also the expressed or presumed will of the patient must be included in such considerations. This article describes and elucidates basic questions of palliative medicine and symptomatic palliative treatment concepts for stroke patients.