Position statement of the Brazilian Palliative Care Academy on withdrawing and withholding life-sustaining interventions in the context of palliative care.

The issue of withrawing and withholding life-sustaining interventions is an important source of controversy among healthcare professionals caring for patients with serious illnesses. Misguided decisions, both in terms of the introduction/maintenance and the withdrawal/withholding of these measures, represent a source of avoidable suffering for patients, their loved ones, and healthcare professionals. This document represents the position statement of the Bioethics Committee of the Brazilian Palliative Care Academy on this issue and establishes seven principles to guide, from a bioethical perspective, the approach to situations related to this topic in the context of palliative care in Brazil. The position statement establishes the equivalence between the withdrawal and withholding of life-sustaining interventions and the inadequacy related to initiating or maintaining such measures in contexts where they are in disagreement with the values and care goals defined together with patients and their families. Additionally, the position statement distinguishes strictly futile treatments from potentially inappropriate treatments and elucidates their critical implications for the appropriateness of the medical decision-making process in this context. Finally, we address the issue of conscientious objection and its limits, determine that the ethical commitment to the relief of suffering should not be influenced by the decision to employ or not employ life-sustaining interventions and warn against the use of language that causes patients/families to believe that only one of the available options related to the use or nonuse of these interventions will enable the relief of suffering.

When Life-Supporting Interventions Lead to Moral Distress.

Moral distress can impact nurses and the care team significantly. A profession dedicated to the principles of caring and compassion is often subjected to patients receiving futile treatment. With the proliferation of extreme life-prolonging measures come the difficulties in the withdrawal of those medical modalities. If a prognosis is poor and care is perceived as curative rather than palliative, providers may often feel conflicted and distressed by their interventions. The American Association of Colleges of Nursing has expressed growing concern about an increase in the use of inappropriate life-support treatments related to futile care. The compelling case of a severely beaten 69-year-old homeless man who had cardiac-arrested and was resuscitated after an unknown amount of down-time, provides the contextual framework for this report. Ethical conflicts can become very challenging, which inevitably increases the suffering of the patient and their caregivers. Research findings suggest that health care organizations can benefit from enacting processes that make ethical considerations an early and routine part of everyday clinical practice. A proactive approach to ethical conflicts may improve patient care outcomes and decrease moral distress.

What Do We Owe Our Patients? Surgeon Obligations When Patients Are Too Sick for Surgery.

As the principle of respect for patient autonomy has gained salience over the past 75 years, surgeons now struggle to resolve conflicts between autonomy and beneficence in certain clinical scenarios. One such conflict occurs when a patient desires a surgical intervention, but the surgeon concludes that the patient is "too sick for surgery" and hence would not benefit from the operation. We provide historical context for the principle of respect for patient autonomy and review recent qualitative data that demonstrate surgeons experience significant moral distress when asked to perform nonbeneficial surgery. Therefore, we sought to empower surgeons with the appropriate ethical justifications to decline to perform surgery when they believe it would be nonbeneficial or harmful to patients. We outline 4 concepts that can help surgeons engage with patients, families, and colleagues in these scenarios. First, we describe the term "futility" and explain the difficulty in precisely defining and using the term in practice. Second, we contrast patients' positive and negative rights, drawing on historical context to argue that patients have robust negative rights but limited positive rights to request nonbeneficial interventions. Third, we use the centuries-old notion of medicine as a profession to show that surgeons have a fiduciary responsibility to act in the best interests of their patients, including and especially when patients request interventions that are not beneficial. Finally, we draw on virtue ethics to give surgeons character-based resources for fulfilling their professional obligations to patients. We contend that surgeons owe their patients the ability to trust that they will always use their knowledge and skills for patients' benefit, even if surgeons must limit patients' autonomy in certain ways to do so.

The Texas Medical Board and the Futility of Medical Exceptions to Abortion Bans.

This Viewpoint describes the failure of yet another state institution to generate meaningful guidance about medical exceptions to abortion bans.

[Time-limited trials (TLT) in the intensive care unit : Recommendations from the ethics section of the DIVI and the ethics section of the DGIIN]. / Zeitlich begrenzter Therapieversuch ("time-limited trial", TLT) auf der Intensivstation : Handlungsempfehlung der Sektion Ethik der DIVI und der Sektion Ethik der DGIIN.

The rise in intensive care treatment procedures is accompanied by an increase in the complexity of decisions regarding the selection, administration and duration of treatment measures. Whether a treatment goal is desirable in an individual case and the treatment plan required to achieve it is acceptable for the patient depends on the patient's preferences, values and life plans. There is often uncertainty as to whether a patient-centered treatment goal can be achieved. The use of a time-limited treatment trial (TLT) as a binding agreement between the intensive care unit (ICU) team and the patient or their legal representative on a treatment concept over a defined period of time in the ICU can be helpful to reduce uncertainties and to ensure the continuation of intensive care measures in the patients' best interest.

Early Termination of Clinical Trials for Futility - Considerations for a Data and Safety Monitoring Board.

Early Termination of Clinical Trials for FutilityClinical trials may be stopped for futility if there is little or no chance of demonstrating the hoped-for effect. Reasons include evidence of no treatment effect, substantial missing data that would unacceptably undermine trial conclusions, or event rates too low to support meaningful comparisons. This review examines issues faced by DSMBs in such settings.

Frequency and Severity of Moral Distress in Nephrology Fellows: A National Survey.

INTRODUCTION: Moral distress is a negative affective response to a situation in which one is compelled to act in a way that conflicts with one's values. Little is known about the workplace scenarios that elicit moral distress in nephrology fellows. METHODS: We sent a moral distress survey to 148 nephrology fellowship directors with a request to forward it to their fellows. Using a 5-point (0-4) scale, fellows rated both the frequency (never to very frequently) and severity (not at all disturbing to very disturbing) of commonly encountered workplace scenarios. Ratings of ≥3 were used to define "frequent" and "moderate-to-severe" moral distress. RESULTS: The survey was forwarded by 64 fellowship directors to 386 fellows, 142 of whom (37%) responded. Their mean age was 33 ± 3.6 years and 43% were female. The scenarios that most commonly elicited moderate to severe moral distress were initiating dialysis in situations that the fellow considered futile (77%), continuing dialysis in a hopelessly ill patient (81%) and carrying a high patient census (75%), and observing other providers giving overly optimistic descriptions of the benefits of dialysis (64%). Approximately 27% had considered quitting fellowship during training, including 9% at the time of survey completion. CONCLUSION: A substantial majority of nephrology trainees experienced moral distress of moderate to severe intensity, mainly related to the futile treatment of hopelessly ill patients. Efforts to reduce moral distress in trainees are required.

Inter-physician variability in strategies linked to treatment limitations after severe traumatic brain injury; proactivity or wait-and-see.

BACKGROUND: Prognostic uncertainty is a challenge for physicians in the neuro intensive care field. Questions about whether continued life-sustaining treatment is in a patient's best interests arise in different phases after a severe traumatic brain injury. In-depth information about how physicians deal with ethical issues in different contexts is lacking. The purpose of this study was to seek insight into clinicians' strategies concerning unresolved prognostic uncertainty and their ethical reasoning on the issue of limitation of life-sustaining treatment in patients with minimal or no signs of neurological improvement after severe traumatic brain injury in the later trauma hospital phase. METHODS: Interviews with 18 physicians working in a neurointensive care unit in a large Norwegian trauma hospital, followed by a qualitative thematic analysis focused on physicians' strategies related to treatment-limiting decision-making. RESULTS: A divide between proactive and wait-and-see strategies emerged. Notwithstanding the hospital's strong team culture, inter-physician variability with regard to ethical reasoning and preferred strategies was exposed. All the physicians emphasized the importance of team-family interactions. Nevertheless, their strategies differed: (1) The proactive physicians were open to consider limitations of life-sustaining treatment when the prognosis was grim. They initiated ethical discussions, took leadership in clarification and deliberation processes regarding goals and options, saw themselves as guides for the families and believed in the necessity to prepare families for both best-case and worst-case scenarios. (2) The "wait-and-see" physicians preferred open-ended treatment (no limitations). Neurologically injured patients need time to uncover their true recovery potential, they argued. They often avoided talking to the family about dying or other worst-case scenarios during this phase. CONCLUSIONS: Depending on the individual physician in charge, ethical issues may rest unresolved or not addressed in the later trauma hospital phase. Nevertheless, team collaboration serves to mitigate inter-physician variability. There are problems and pitfalls to be aware of related to both proactive and wait-and-see approaches. The timing of best-interest discussions and treatment-limiting decisions remain challenging after severe traumatic brain injury. Routines for timely and open discussions with families about the range of ethically reasonable options need to be strengthened.

Resuscitating Patient Rights during the Pandemic: COVID-19 and the Risk of Resurgent Paternalism.

The COVID-19 Pandemic a stress test for clinical medicine and medical ethics, with a confluence over questions of the proportionality of resuscitation. Drawing upon his experience as a clinical ethicist during the surge in New York City during the Spring of 2020, the author considers how attitudes regarding resuscitation have evolved since the inception of do-not-resuscitate (DNR) orders decades ago. Sharing a personal narrative about a DNR quandry he encountered as a medical intern, the author considers the balance of patient rights versus clinical discretion, warning about the risk of resurgent physician paternalism dressed up in the guise of a public health crisis.

Disagreement About Surgical Intervention in Trisomy 18.

In this case, we explore physician conflict with performing surgery (tracheostomy) for long-term ventilation in a term infant with trisomy 18 and respiratory failure. Experts in neonatal-perinatal medicine, pediatric bioethics, and pediatric palliative care have provided comments on this case. An additional commentary was written by the parent of another infant with trisomy 18, who is also a medical provider (physical therapist).

Obstinación terapéutica y su límite con la ética: ¿cuándo detenerse? / Therapeutic effort limit, when do we stop?

Obstinacy or therapeutic cruelty is a medical practice based on the application of extraordinary and disproportionate methods of life support in terminally ill or irrecoverable patients. It is not without risks and can cause physical, psychological and social damage, which is why this practice is not ethically acceptable. It violates the four principles of bioethics: non-maleficence, beneficence, justice and autonomy. The reasons that lead to therapeutic obstinacy are: 1) lack of a definitive diagnosis; 2) false expectation of improvement of the patient; 3) disagreement (between doctors and family or between doctors themselves) with respect the patient's situation; 4) difficulty in communicating with the patient and his/her family; 5) compliance with unrealistic or futile treatments; 6) cultural or spiritual barriers and 7) medical-legal aspects. Limitation of therapeutic effort (LTE) is a deliberate or thoughtful decision about the non-implementation or withdrawal of therapeutic measures that will not provide significant benefit to the patient. But, refusing a treatment, must not imply the artificial acceleration of the death process. Chile does not contemplate euthanasia or assisted suicide in its legislation. Criteria used to justify the limitation of the therapeutic effort are: 1) futility of the treatment (futility); 2) declared wishes of the patient; 3) quality of life and 4) economic cost. The Healthcare Ethics Committee of the Hospital de Urgencia Asistencia Pública has prepared a LET Clinical Guide, proposing a decision-making flow chart that takes in account the autonomy of the patient, the opinion of the medical team, patient and family. In case of disagreement, the Healthcare Ethics Committee's may be requested to issue a pronouncement.

La obstinación o ensañamiento terapéutico es una práctica médica basada en la aplicación de métodos extraordinarios y desproporcionados de soporte vital en enfermos terminales o irrecuperables. No está exenta de riesgos y puede producir daño físico, psicológico y social, motivo por el cual no es aceptable desde el punto de vista ético. Viola los cuatro principios de la bioética: no maleficencia, beneficencia, justicia y autonomía. Las razones que conducen a la obstinación terapéutica son: 1) la falta de un diagnóstico definitivo; 2) la falsa expectativa en el mejoramiento del paciente; 3) el desacuerdo (entre médicos y familia o entre los médicos mismos) con la situación del paciente; 4) la dificultad para comunicarse con el paciente y con la familia; 5) la conformidad con tratamientos poco realistas o fútiles; 6) barreras culturales o espirituales y 7) aspectos médico legales. La limitación del esfuerzo terapéutico (LET) es una decisión deliberada o meditada sobre la no implementación o la retirada de medidas terapéuticas que no aportarán un beneficio significativo al paciente. Pero, rechazar un tratamiento no puede implicar la aceleración artificial del proceso de la muerte. Chile no contempla en su legislación la eutanasia ni el suicidio asistido. Criterios utilizados para justificar o no, la limitación del esfuerzo terapéutico: 1) la inutilidad del tratamiento (futilidad); 2) los deseos expresos del paciente; 3) la calidad de vida y 4) el costo económico. El Comité de Ética Asistencial del Hospital de Urgencia Asistencia Pública, ha elaborado una Guía Clínica de LET. Propone un flujograma de toma de decisiones que considera la autonomía del paciente, la postura tanto del equipo médico, del paciente y su familia y en caso de no acuerdo, del comité de Ética Asistencial.

The Charlie Gard Case, and the Ethics of Obstructing International Transfer of Seriously Ill Children.

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.

Reflections on Charlie Gard and the Best Interests Standard From Both Sides of the Atlantic Ocean.

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.

Pediatric Suffering and the Burden of Proof.

The alleviation of suffering has always been central to the care of the sick. Yet as medical technology has advanced and life-sustaining treatments multiplied, medicine's capacity to both prevent and create suffering has grown exponentially. In pediatric medicine, the ability to stave off death with life-sustaining treatments allows children to survive but also to suffer in ways that are diverse and unprecedented. However, although parents and pediatric clinicians broadly agree that all children can suffer, there is little published literature in which researchers analyze or clarify the concept of pediatric suffering. This gap is worrisome, especially in light of growing concerns that the label of suffering is used to justify end-of-life decision-making and mask quality-of-life determinations for pediatric patients with profound neurologic impairment. Moreover, the awareness that some children can experience suffering but cannot communicate whether and how they are suffering creates a problem. Does the determination of suffering in a nonverbal child lie in the judgement of clinicians or parents? In this article, I will address several important questions related to the suffering of children through an analysis of two prevalent conceptualizations of pediatric suffering and suggest a possible avenue forward for future scholarship.

Getting the Balance Right: Medical Futility, Scientific Advancement, and the Role of Law.

The concept of medical futility as an applied ethical framework has seen a rise and fall in its popularity over the last 30 years. It is a term used in relation to the assessment of a patient's health condition that is deemed untreatable, irreversible, and unresolvable. In four recent cases, Gard, Evans, Haastrup, and Raqeeb, the concept has been brought to the fore once again. These cases highlight a mounting tension between clinicians and families. Parental desires to see their child's treatment continued, while understandable, should not dominate treatment planning. This article analyses judicial interpretation of the factors which determine an assessment of futility and in doing so, argues that the role of medical futility in judicial decisions of this kind is gaining prominence and will continue to do so as scientific advancement blurs the limits of medicine even further.