With recent guidance from the BMA and RCP on the withdrawal of nutrition from patients, and how the cause of death is being recorded (1), and the case of Vincent Lambert (2), the debate surrounding withdrawal of care and treatment has been rekindled in Catholic circles. In this article, I wish to highlight some of traditional principles that form the basis of such decision-making. I discuss these within the context of the withdrawal of nutrition and hydration (NaH), (...) as well as ventilation, to elucidate the key points. (shrink)

Research questions and backgroundThis study explores a highly controversial issue of medical care in Germany: the decision to withhold or withdraw mechanical ventilation in critically ill patients. It analyzes difficulties in making these decisions and the physicians’ uncertainty in understanding the German terminology of Sterbehilfe, which is used in the context of treatment limitation. Used in everyday language, the word Sterbehilfe carries connotations such as helping the patient in the dying process or helping the patient to enter the dying (...) process. Yet, in the legal and ethical discourse Sterbehilfe indicates several concepts: (1) treatment limitation, i.e., withholding or withdrawing life-sustaining treatment (passive Sterbehilfe), (2) the use of medication for symptom control while taking into account the risk of hastening the patient’s death (indirekte Sterbehilfe), and (3) measures to deliberately terminate the patient’s life (aktive Sterbehilfe). The terminology of Sterbehilfe has been criticized for being too complex and misleading, particularly for practical purposes. Materials and methods An exploratory study based on qualitative interviews was conducted with 28 physicians from nine medical intensive care units in tertiary care hospitals in the German federal state of Baden-Wuerttemberg. The method of data collection was a problem-centered, semi-structured interview using two authentic clinical case examples. In order to shed light on the relation between the physicians’ concepts and the ethical and legal frames of reference, we analyzed their way of using the terms passive and aktive Sterbehilfe. Results Generally, the physicians were more hesitant in making decisions to withdraw rather than withhold mechanical ventilation. Almost half of them assumed a categorical prohibition to withdraw any mechanical ventilation and more than one third felt that treatment ought not to be withdrawn at all. Physicians showed specific uncertainty about classifying the withdrawal of mechanical ventilation as passive Sterbehilfe, and had difficulties understanding that terminating ventilation is not basically illegal, but the permissibility of withdrawal depends on the situation. Conclusions The physicians’ knowledge and skills in interpreting clinical ethical dilemmas require specific improvement on the one hand; on the other hand, the terms passive and aktive Sterbehilfe are less clear than desirable and not as easy to use in clinical practice. Fear of making unjustified or illegal decisions may motivate physicians to continue (even futile) treatment. Physicians strongly opt for more open discussion about end-of-life care to allow for discontinuation of futile treatment and to reduce conflict. (shrink)

Research questions and backgroundThis study explores a highly controversial issue of medical care in Germany: the decision to withhold or withdraw mechanical ventilation in critically ill patients. It analyzes difficulties in making these decisions and the physicians’ uncertainty in understanding the German terminology of Sterbehilfe, which is used in the context of treatment limitation. Used in everyday language, the word Sterbehilfe carries connotations such as helping the patient in the dying process or helping the patient to enter the dying (...) process. Yet, in the legal and ethical discourse Sterbehilfe indicates several concepts: (1) treatment limitation, i.e., withholding or withdrawing life-sustaining treatment (passive Sterbehilfe), (2) the use of medication for symptom control while taking into account the risk of hastening the patient’s death (indirekte Sterbehilfe), and (3) measures to deliberately terminate the patient’s life (aktive Sterbehilfe). The terminology of Sterbehilfe has been criticized for being too complex and misleading, particularly for practical purposes. Materials and methods An exploratory study based on qualitative interviews was conducted with 28 physicians from nine medical intensive care units in tertiary care hospitals in the German federal state of Baden-Wuerttemberg. The method of data collection was a problem-centered, semi-structured interview using two authentic clinical case examples. In order to shed light on the relation between the physicians’ concepts and the ethical and legal frames of reference, we analyzed their way of using the terms passive and aktive Sterbehilfe. Results Generally, the physicians were more hesitant in making decisions to withdraw rather than withhold mechanical ventilation. Almost half of them assumed a categorical prohibition to withdraw any mechanical ventilation and more than one third felt that treatment ought not to be withdrawn at all. Physicians showed specific uncertainty about classifying the withdrawal of mechanical ventilation as passive Sterbehilfe, and had difficulties understanding that terminating ventilation is not basically illegal, but the permissibility of withdrawal depends on the situation. Conclusions The physicians’ knowledge and skills in interpreting clinical ethical dilemmas require specific improvement on the one hand; on the other hand, the terms passive and aktive Sterbehilfe are less clear than desirable and not as easy to use in clinical practice. Fear of making unjustified or illegal decisions may motivate physicians to continue (even futile) treatment. Physicians strongly opt for more open discussion about end-of-life care to allow for discontinuation of futile treatment and to reduce conflict. (shrink)

Do extraordinary crisis situations requiring life-and-death decisions create a “state of exception” in which ordinary social, political, and ethical norms must be altered or suspended altogether? Daniel Sulmasy contends that the extraordinary circumstances of a pandemic do not require abandoning or altering ethical values and principles. Rather, “ethics as usual” ought to guide policy formation and clinical decision-making. One critical question raised by the current pandemic, and which stresses ordinary ethical standards, is whether ventilators or other scarce life-sustaining resources may (...) be unilaterally withdrawn from a patient in order to be reallocated to another who is estimated to have a superior chance of survival or better satisfies other triage criteria. In this type of situation, it is unclear what constitutes “ethics as usual.”. (shrink)

A request to admit a hospital inpatient with motor neurone disease to the hospice generated unusual unease. Significantly, withdrawal of ventilation had already been planned. The presumption that ventilation would be withdrawn after transfer presented a dilemma. Should the hospice accept the admission? If so, should the hospice staff stop the ventilation, and then when and how? Debate centred on the continuity of best interests and the logistics of withdrawing ventilation. The factors making the request (...) contentious identified competing interests within hospice admission decision making that could detrimentally impact on patient care. (shrink)

Sometimes it's better to be lucky than good. As new blood filled our young patient's veins, her breathing became regular and her pulse full. She was so far gone I would not have expected her to recover consciousness for a day, if at all, but within an hour, she began to wake up. We removed the breathing tube a couple of hours later— no ventilator ever needed.As life-sustaining technology becomes more widely available in fortunate parts of the developing world, benefits (...) come with complications. The temptation is to focus on the thing—the ventilator itself—as the crucial element and press to buy more, mistaking the problem for one of resource scarcity only. But we need a culturally relevant ethical framework to guide the use and withdrawal of ventilators and similar life-sustaining tools. Resource scarcity is only part of the problem. Buying additional ventilators only defers allocation decisions and entirely fails to address end-of-life suffering. It is unsustainable in Rwanda; it is a dubious solution anywhere. The intangible need for an ethical framework hides beneath apparent scarcity and, when this need is not addressed and luck runs out, one salvageable patient can die for want of a ventilator that serves only to prolong the suffering of another. (shrink)

Withholding or withdrawing life-saving ventilators can become necessary when resources are insufficient. With rising cases in many countries, and likely further peaks in the coming colder seasons, ventilator triage guidance remains a central part of the COVID-19 policy response. The dominant model in ventilator triage guidelines prioritises the ethical principles of saving the most lives and saving the most life-years. We sought to ascertain to what extent this focus aligns, or conflicts, with the preferences of disadvantaged minority populations. We conducted (...) a bibliographical search of PubMed and Google Scholar and reviewed all ventilator rationing guidelines included in major recent systematic reviews, yielding 589 studies before screening. Post screening, we found six studies comprising a total of 10 591 participants, with 1247 from disadvantaged populations. Three studies reported findings stratified by race and age, two of which stratified by income. Studies included two to seven principles; all included ‘save the most lives’. Involvement of disadvantaged minority populations in eliciting preferences is very limited; few studies capture race and income. This is concerning, as despite relatively small numbers and framing effects there is an observable and plausible trend suggesting that disadvantaged groups worry that dominant principles reduce their chances of receiving a ventilator. To avoid compounding prior historical and structural disadvantage, policy makers need to engage more fully with these populations in designing and justifying ventilator rationing guidance and review their adequacy. Likewise, clinicians need to be aware that their implementation of dominant triage guidelines is viewed with higher levels of concern by minority populations. (shrink)

There is a concern that as a result of COVID-19 there will be a shortage of ventilators for patients requiring respiratory support. This concern has resulted in significant debate about whether it is appropriate to withdraw ventilation from one patient in order to provide it to another patient who may benefit more. The current advice available to doctors appears to be inconsistent, with some suggesting withdrawal of treatment is more serious than withholding, while others suggest that this distinction (...) should not be made. We argue that there is no ethically relevant difference between withdrawing and withholding treatment and that suggesting otherwise may have problematic consequences. If doctors are discouraged from withdrawing treatment, concern about a future shortage may make them reluctant to provide ventilation to patients who are unlikely to have a successful outcome. This may result in underutilisation of available resources. A national policy is urgently required to provide doctors with guidance about how patients should be prioritised to ensure the maximum benefit is derived from limited resources. (shrink)

Background According to some medical ethicists and professional guidelines, there is no ethical difference between withholding and withdrawing life-sustaining treatment. However, medical professionals do not always agree with this notion. Patients and their families may also not regard these decisions as equivalent. Perspectives on life-sustaining treatment potentially differ between cultures and countries. This study compares Japanese physicians’ and citizens’ attitudes toward hypothetical cases of withholding and withdrawing life-sustaining treatment.Methods Ten vignette cases were developed. A web-based questionnaire was administered to 457 (...) citizens and 284 physicians to determine whether they supported withholding or withdrawing treatment.Results In a case where a patient had an advance directive refusing ventilation, 77% of the physicians and 68% of the citizens chose to withhold treatment. In a case where there was an advance directive but the patient’s family requested treatment, 55% of the physicians and 45% of the citizens chose to withhold the ventilator. When a family requested withdrawal of the ventilator but patient wishes were unknown, 19% of the physicians and 48% of the citizens chose to withdraw the ventilator. However, when the patient had also indicated their wishes in writing, 49% of the physicians and 66% of the citizens chose to withdraw treatment. More physicians were prepared to withdraw dialysis (84%) and artificial nutrition (81%) at a patient’s request than mechanical ventilation (49%).Conclusions A significant proportion of Japanese physicians and citizens were reluctant to withhold or withdraw life-sustaining treatment, even in cases where the patient had indicated their wishes in writing. They were more likely to withhold than withdraw treatment, and more likely to withdraw artificial nutrition than mechanical ventilation. Japanese physicians gave significant weight to family views about treatment but were less likely to agree to withdraw treatment than citizens, indicating a potential source of conflict in clinical settings. (shrink)

For the 17 centuries since Hippocrates called for “the most desperate remedies in desperate cases,” physicians have adhered steadfastly to two cooperative goals: to prolong life and to relieve suffering. ut during the past 50 years, mechanical interventions at the edge of life have thrown those aims into dramatic conflict. Cardiopulmonary resuscitation, mechanical ventilation, feeding tubes, and the intensive care unit have postponed physiologic death for many patients who are anencephalic, comatose, or in a persistent vegetative state or prefer (...) death to a life of suffering and pain. Demands from patients' families and cries for social justice have compelled physicians, hospital personnel, and the Supreme Court to analyze concepts long reserved for university philosophers. Although decisions are made daily to withhold and withdraw life support, society is gradually agreeing upon an ethical framework that balances hopeful science with dignified death. This article outlines that ethical framework, reviews recent legal precedents, and suggests practical guidelines for their application. (shrink)

Withholding or withdrawing life-saving ventilators can become necessary when resources are insufficient. In the USA, such rationing has unique social justice dimensions. Structural elements of dominant allocation frameworks simultaneously advantage white communities, and disadvantage Black communities—who already experience a disproportionate burden of COVID-19-related job losses, hospitalisations and mortality. Using the example of New Jersey’s Crisis Standard of Care policy, we describe how dominant rationing guidance compounds for many Black patients prior unfair structural disadvantage, chiefly due to the way creatinine and (...) life expectancy are typically considered.We outline six possible policy options towards a more just approach: improving diversity in decision processes, adjusting creatinine scores, replacing creatinine, dropping creatinine, finding alternative measures, adding equity weights and rejecting the dominant model altogether. We also contrast these options with making no changes, which is not a neutral default, but in separate need of justification, despite a prominent claim that it is simply based on ‘objective medical knowledge’. In the regrettable absence of fair federal guidance, hospital and state-level policymakers should reflect on which of these, or further options, seem feasible and justifiable.Irrespective of which approach is taken, all guidance should be supplemented with a monitoring and reporting requirement on possible disparate impacts. The hope that we will be able to continue to avoid rationing ventilators must not stand in the way of revising guidance in a way that better promotes health equity and racial justice, both to be prepared, and given the significant expressive value of ventilator guidance. (shrink)

Decisions about long-term ventilation in children can be clinically contentious and ethically challenging. In this article, the relevant legal, professional and moral principles inherent in such cases are explored. We commend the central importance of deliberation in the assessment of best interests, and propose a practical framework to assist the parent–clinical team to reach decisions in as transparent and equitable a manner as possible.

In this paper, I discuss David Shaw's claim that the body of a terminally ill person can be conceived as a kind of life support, akin to an artificial ventilator. I claim that this position rests upon an untenable dualism between the mind and the body. Given that dualism continues to be attractive to some thinkers, I attempt to diagnose the reasons why it continues to be attractive, as well as to demonstrate its incoherence, drawing on some recent work in (...) the philosophy of psychology. I conclude that, if my criticisms are sound, Shaw's attempt to deny the distinction between withdrawal and euthanasia fails. (shrink)

In a paper that has recently attracted discussion, David Shaw has attempted to criticize the distinction the law has drawn between withdrawing and withholding life-sustaining measures on the one hand, and euthanasia on the other, by claiming that the body of a terminally ill patient should be seen as akin to life support. Shaw compares two cases that we might, at least at first, regard as distinct, and argues that they are not. In the first case, Adam, who is dying (...) of lung cancer, is connected to a ventilator and requests to be disconnected. In the second case, Brian, also dying of cancer, is not connected to anything, and so he requests his doctor to provide him with a lethal injection. In the first case, Shaw contends, Adam is being kept alive by a ventilator. In the second case, Brian is being kept alive by his body. (shrink)

This paper focuses on the ethical dilemmas created by advanced technology that would allow patients with motor neurone disease to be sustained by artificial ventilation. The author attempts to support the patient's right to informed choice, arguing from the perspective of autonomy as a first order principle. The counter arguments of caregiver burden and financial restraints are analysed. In the UK, where active euthanasia is not legalized, the dilemma of commencing ventilation is seen to be outweighed by the (...) problems of withdrawing this treatment. The lack of accurate data and protocols that would clarify the current situation is emphasized and the conclusion takes the form of a recommendation for further research. (shrink)

Did Chinese mysticism vanish after its first appearance in ancient Taoist philosophy, to surface only after a thousand years had passed, when the Chinese had adapted Buddhism to their own culture? This first integrated survey of the mystical dimension of Taoism disputes the commonly accepted idea of such a hiatus. Covering the period from the Daode jing to the end of the Tang, Livia Kohn reveals an often misunderstood Chinese mystical tradition that continued through the ages. Influenced by but ultimately (...) independent of Buddhism, it took forms more various than the quietistic withdrawal of Laozi or the sudden enlightenment of the Chan Buddhists. On the basis of a new theoretical evaluation of mysticism, this study analyzes the relationship between philosophical and religious Taoism and between Buddhism and the native Chinese tradition. Kohn shows how the quietistic and socially oriented Daode jing was combined with the ecstatic and individualistic mysticism of the Zhuangzi, with immortality beliefs and practices, and with Buddhist insight meditation, mind analysis, and doctrines of karma and retribution. She goes on to demonstrate that Chinese mysticism, a complex synthesis by the late Six Dynasties, reached its zenith in the Tang, laying the foundations for later developments in the Song traditions of Inner Alchemy, Chan Buddhism, and Neo-Confucianism. (shrink)

Most donated organs in the United States come from brain dead donors, while a small percentage come from patients who die in “controlled,” or expected, circumstances, typically after the family or surrogate makes a decision to withdraw life support. The number of organs available for transplant could be substantially if donations were permitted in “uncontrolled” circumstances–that is, from people who die unexpectedly, often outside the hospital. According to projections from the Institute of Medicine, establishing programs permitting “uncontrolled donation after circulatory (...) determination of death,” or uDCDD, throughout the United States has the potential to provide 22,000 more donation opportunities annually. In contrast, U.S. controlled donation after circulatory determination of death, or cDCDD, cases have increased progressively over the past decade from 87 to 848 donors, but currently account for only 10.6 percent of all deceased donors. Following the IOM recommendations, several projects exploring the feasibility of uDCDD were funded by the federal government, including a grant from the Health Resources and Services Administration that supported a pilot project in New York City in which the authors of this article participated.A key feature of our protocol, and indeed of many uDCDD protocols, is the initiation of preservation methods such as chest compressions and extracorporeal membrane oxygenation shortly after death in order to perfuse and preserve the donor's organs. Critics of uDCDD argue that the means of determining death deviates from generally ascribed principles. They assert that reinstituting circulation in order to preserve organs has the effect of “undoing” the prior determination of death. The result is that cDCDD is widely accepted and practiced routinely even though it only marginally increases the number of organs available for transplantation, and uDCDD is widely considered unacceptable despite being ethically embraced and proven to significantly increase organ donation opportunities in other countries. This article explores the evolution of this counterintuitive state of affairs and calls for a policy that, in line with the IOM report, allows for both cDCDD and uDCDD protocols. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Convention for Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Biomedicine: Convention on Human Rights and BiomedicineCouncil of EuropePreambleThe Member States of the Council of Europe, the other States and the European Community signatories hereto,Bearing in mind the Universal Declaration of Human Rights proclaimed by the General Assembly of the United Nations on 10 December 1948;Bearing in mind the (...) Convention for the Protection of Human Rights and Fundamental Freedoms of 4 November 1950;Bearing in mind the European Social Charter of 18 October 1961;Bearing in mind the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights of 16 December 1966;Bearing in mind the Convention for the Protection of Individuals with Regard to Automatic Processing of Personal Data of 28 January 1981;Bearing also in mind the Convention on the Rights of the Child of 20 November 1989;Considering that the aim of the Council of Europe is the achievement of a greater unity between its members and that one of the methods by which that aim is to be pursued is the maintenance and further realisation of human rights and fundamental freedoms;Conscious of the accelerating developments in biology and medicine;Convinced of the need to respect the human being both as an individual and as a member of the human species and recognising the importance of ensuring the dignity of the human being; [End Page 277]Conscious that the misuse of biology and medicine may lead to acts endangering human dignity;Affirming that progress in biology and medicine should be used for the benefit of present and future generations;Stressing the need for international co-operation so that all humanity may enjoy the benefits of biology and medicine;Recognising the importance of promoting a public debate on the questions posed by the application of biology and medicine and the responses to be given thereto;Wishing to remind all members of society of their rights and responsibilities;Taking account of the work of the Parliamentary Assembly in this field, including Recommendation 1160 (1991) on the preparation of a Convention on bioethics;Resolving to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine;Have agreed as follows:Chapter IGeneral provisionsArticle 1. (Purpose and object)Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.Each Party shall take in its internal law the necessary measures to give effect to the provisions of this Convention.Article 2. (Primacy of the human being)The interests and welfare of the human being shall prevail over the sole interest of society or science.Article 3. (Equitable access to health care)Parties, taking into account health needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality. [End Page 278]Article 4. (Professional standards)Any intervention in the health field, including research, must be carried out in accordance with relevant professional obligations and standards.Chapter IIConsentArticle 5. (General rule)An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it.This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks.The person concerned may freely withdraw consent at any time.Article 6. (Protection of persons not able to consent)1. Subject to Articles 17 and 20 below, an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit.2. Where, according to law, a minor does not have the capacity to consent to an intervention, the intervention may only be carried out with the authorisation of his or her representative or an authority or a person or... (shrink)

Background Bioethics and law distinguish between the practices of "physician-assisted death" and "allowing the patient to die." Discussion Advances in biotechnology have allowed medical devices to be used as destination therapy that are designed for the permanent support of cardiac function and/or respiration after irreversible loss of these spontaneous vital functions. For permanent support of cardiac function, single ventricle or biventricular mechanical assist devices and total artificial hearts are implanted in the body. Mechanical ventilators extrinsic to the body are used (...) for permanent support of respiration. Clinical studies have shown that destination therapy with ventricular assist devices improves patient survival compared to medical management, but at the cost of a substantial alteration in end-of-life trajectories. The moral and legal assessment of the appropriateness and permissibility of complying with a patient's request to electively discontinue destination therapy in a life-terminating act in non-futile situations has generated controversy. Some argue that complying with this request is ethically justified because patients have the right to request withdrawal of unwanted treatment and be allowed to die of preexisting disease. Other commentators reject the argument that acceding to an elective request for death by discontinuing destination therapy is 'allowing a patient to die' because of serious flaws in interpreting the intention, causation, and moral responsibility of the ensuing death. Summary Destination therapy with cardiac and/or ventilatory medical devices replaces native physiological functions and successfully treats a preexisting disease. We posit that discontinuing cardiac and/or ventilatory support at the request of a patient or surrogate can be viewed as allowing the patient to die if--and only if--concurrent lethal pathophysiological conditions are present that are unrelated to those functions already supported by medical devices in destination therapy. In all other cases, compliance with a patient's request constitutes physician-assisted death because of the pathophysiology induced by the turning off of these medical devices, as well as the intention, causation, and moral responsibility of the ensuing death. The distinction between allowing the patient to die and physician-assisted death is pivotal to the moral and legal status of elective requests for death by discontinuing destination cardiac and/or ventilatory medical devices in patients who are not imminently dying. This distinction also represents essential information that must be disclosed to patients and surrogates in advance of consent to this type of therapy. (shrink)

Michael Nair-Collins and Franklin G. Miller argue in an extended essay that the dominant view in medical ethics of patients who are brain dead but sustained on mechanical ventilation is false. According to this view, these unfortunate patients are biologically dead, yet appear to be alive as a result of the fact that mechanical ventilation ensures that their heart continues to beat, that their skin remains warm, that their wounds continue to heal, that their body does not decay, (...) and that they continue to breathe. This view was defended by the U.S. President’s Commission in 1981, and again by the President’s Council in 2008. That brain-dead, mechanically ventilated patients are biologically dead—rather than dead merely in a social or legal sense—is seen by defenders of this view as important. The President’s Council explicitly rejected the idea that death is anything other than a fact of biology. The significance of this move is explained by Nair-Collins and Miller as follows: > Getting this biological conception right is critically important: responsible moral and policy deliberation begins with an unbiased assessment of relevant factual questions. One cannot address the difficult normative questions surrounding organ retrieval, just use of resources, withdrawal of mechanical support and so on, without first addressing the biological question: what is the vital status of this organism? Essentially, working with a biological conception of death makes certain decisions much less ethically murky than they would be in the absence of such a conception. The ‘dead donor rule’, for example, prohibits causing death to a patient by removing their organs. If it is a fact of biology that brain-dead, mechanically ventilated patients are dead, then removing their organs for donation clearly does not fall foul of the dead donor rule. If, on the other hand, the …. (shrink)

Background In the Netherlands, using drugs to deliberately end the life of a severely defective newborn baby who is in extreme suffering can be permissible under very precise circumstances. This does not mean that all Dutch neonatologists are willing to engage in such behaviour. This paper discusses the use of neuromuscular blockers (NMBs) in connection with abstention decisions in neonatology and the boundaries between ‘deliberate ending of life’ and other end-of-life decisions. These boundaries are of paramount importance because, of all (...) end-of-life decisions, only ‘deliberate ending of life’ must be reported by the responsible doctor and exposes him to the risk of being prosecuted. Methods 14 Dutch neonatologists were presented with a hypothetical case of a severely asphyxiated baby who faces a long dying process after withdrawal of ‘medically futile’ (zinloos) life-sustaining ventilation. Doctors were asked whether it is acceptable to administer NMBs in this situation and whether such behaviour should be reported. Results and conclusions Doctors' responses were heterogeneous, showing that the acceptability of using NMBs in certain situations and the boundaries between end-of-life decisions are currently a subject of discussion among Dutch neonatologists. Many respondents reported feeling threatened by the potential involvement of the criminal law authorities in the system of control over ‘deliberate ending of life’. (shrink)

BackgroundBioethics and law distinguish between the practices of "physician-assisted death" and "allowing the patient to die."DiscussionAdvances in biotechnology have allowed medical devices to be used as destination therapy that are designed for the permanent support of cardiac function and/or respiration after irreversible loss of these spontaneous vital functions. For permanent support of cardiac function, single ventricle or biventricular mechanical assist devices and total artificial hearts are implanted in the body. Mechanical ventilators extrinsic to the body are used for permanent support (...) of respiration. Clinical studies have shown that destination therapy with ventricular assist devices improves patient survival compared to medical management, but at the cost of a substantial alteration in end-of-life trajectories. The moral and legal assessment of the appropriateness and permissibility of complying with a patient's request to electively discontinue destination therapy in a life-terminating act in non-futile situations has generated controversy. Some argue that complying with this request is ethically justified because patients have the right to request withdrawal of unwanted treatment and be allowed to die of preexisting disease. Other commentators reject the argument that acceding to an elective request for death by discontinuing destination therapy is 'allowing a patient to die' because of serious flaws in interpreting the intention, causation, and moral responsibility of the ensuing death.SummaryDestination therapy with cardiac and/or ventilatory medical devices replaces native physiological functions and successfully treats a preexisting disease. We posit that discontinuing cardiac and/or ventilatory support at the request of a patient or surrogate can be viewed as allowing the patient to die if--and only if--concurrent lethal pathophysiological conditions are present that are unrelated to those functions already supported by medical devices in destination therapy. In all other cases, compliance with a patient's request constitutes physician-assisted death because of the pathophysiology induced by the turning off of these medical devices, as well as the intention, causation, and moral responsibility of the ensuing death. The distinction between allowing the patient to die and physician-assisted death is pivotal to the moral and legal status of elective requests for death by discontinuing destination cardiac and/or ventilatory medical devices in patients who are not imminently dying. This distinction also represents essential information that must be disclosed to patients and surrogates in advance of consent to this type of therapy. (shrink)

Objectives: To collect information on the involvement, legal understanding and ethical views of preregistration house officers regarding end-of-life decision making in clinical practice.Design: Structured telephone interviews.Participants: 104 PRHO who responded.Main outcome measures: Information on the frequency and quality of involvement of PRHO in end-of-life decision making, their legal understanding and ethical views on do-not-resuscitate order and withdrawal of treatment.Results: Most PRHO participated in team discussions on the withdrawal of treatment or a DNR order . Of them, 46 participants (...) had themselves discussed the DNR order with patients. In all, it was agreed by 84 respondents that it would be unethical to make a DNR order on any patient who is competent without consulting her or him. With one exception, it was indicated by the participants that patients who are competent may refuse tube feeding and 101 participants thought that patients may refuse intravenous nutrition. The withdrawal of artificial ventilation in incompetent patients with serious and permanent brain damage was considered to be morally appropriate by 95 and 97 thought so about the withdrawal of antibiotics. The withdrawal of intravenous hydration was considered by 67 to be morally appropriate in this case.Conclusions: PRHO are often involved with end-of-life decision making. The results on ethical and legal understanding about the limitations of treatment may be interpreted as a positive outcome of the extensive undergraduate teaching on this subject. Future empirical studies, by a qualitative method, may provide valuable information about the arguments underlying the ethical views of doctors on the limitations of different types of medical treatment. (shrink)

BackgroundThis essay provides an ethical and conceptual argument for the use of informed consent prior to the diagnosis of brain death. It is meant to enable the family to make critical end-of-life decisions, particularly withdrawal of life support system and organ donation, before brain death is diagnosed, as opposed to the current practice of making such decisions after the diagnosis of death. The recent tragic case of a 13-year-old brain-dead patient in California who was maintained on a ventilator for (...) over 2 years illustrates how such a consent would have made a crucial difference.MethodsConceptual, philosophical, and ethical analysis.ResultsI first consider a conceptual justification for the use of consent for certain non-beneficial and unwanted medical diagnoses. I suggest that the diagnosis of brain death falls into this category for some patients. Because the diagnostic process of brain death lacks the transparency of traditional death determination, has a unique epistemic structure and a complex risk-benefit profile which differs markedly from case to case, and presents conflicts of interest for physicians and society, I argue that pre-diagnostic counseling and informed consent should be part of the diagnostic process. This approach can be termed as “allow cardiac death”, whose parallel logic with “allow natural death” is discussed. I also discuss potential negative impacts on organ donation and health care cost from this proposal and offer possible mitigation. I show that the pre-diagnostic counseling can improve the possibility for well-thought-out decisions regarding organ donation and terminating life-support system in cases of hopeless prognosis. This approach differs conceptually from the pluralism of the definition of death, such as those in New Jersey and Japan, and it upholds the Uniform Determination of Death Act.ConclusionsMy intention is not to provide an instant panacea for the ongoing impasse of the brain death debate, but to point to a novel conceptual ground for a more pragmatic, and more patient- and family-centered approach. By enabling the family to consent to or decline the diagnostic process of brain death, but not to choose the definition of death, it upholds the current legal definition of death. (shrink)

The Royal College of Physicians of London published the 2013 national clinical guidelines on prolonged disorders of consciousness in vegetative and minimally conscious states. The guidelines acknowledge the rapidly advancing neuroscientific research and evolving therapeutic modalities in PDOC. However, the guidelines state that end-of-life decisions should be made for patients who do not improve with neurorehabilitation within a finite period, and they recommend withdrawal of clinically assisted nutrition and hydration . This withdrawal is deemed necessary because patients in (...) PDOC can survive for years with continuation of CANH, even when a ceiling on medical care has been imposed, i.e., withholding new treatment such as cardiopulmonary resuscitation for acute life-threatening illness. The end-of-life care pathway is centered on a staged escalation of medications, including sedatives, opioids, barbiturates, and general anesthesia, concurrent with withdrawal of CANH. Agitation and distress may last from several days to weeks because of the slow dying process from starvation and dehydration. The potential problems of this end-of-life care pathway are similar to those of the Liverpool Care Pathway. After an independent review in 2013, the Department of Health discontinued the Liverpool Care pathway in England. The guidelines assert that clinicians, supported by court decisions, have become the final authority in nonconsensual withdrawal of CANH on the basis of “best interests” rationale. We posit that these guidelines lack high-quality evidence supporting: 1) treatment futility of CANH, 2) reliability of distress assessment from starvation and dehydration, 3) efficacy of pharmacologic control of this distress, and 4) proximate causation of death. Finally, we express concerns about the utilitarian-based assessment of what constitutes a person’s best interests. We are disturbed by the level and the role of medical authoritarianism institutionalized by these national guidelines when deciding on the worthiness of life in PDOC. We conclude that these guidelines are not only harmful to patients and families, but they represent the means of nonconsensual euthanasia. The latter would constitute a gross violation of the public’s trust in the integrity of the medical profession. (shrink)

End-of-life decision making is fraught with ethical challenges. Withholding or withdrawing life support therapy is widely considered ethical in patients with high treatment burden, poor premorbid status, or significant projected disability even when such treatment is not “futile.” Whether such withdrawal of therapy in the aftermath of attempted suicide is ethical is not well established in the literature. We provide a clinical vignette and propose criteria under which such withdrawal would be ethical. We suggest that it is appropriate (...) to withdraw life support, regardless of the cause of the critical illness or disability, when the following criteria are met: Surrogates request withdrawal of care and the adequacy of surrogates is confirmed, an external reasonability standard is met, passage of time, perhaps 72 hours, to allow certainty regarding the patient's wishes, and psychiatric morbidity should be considered as grounds for withdrawal only in truly treatment-refractory cases. Fundamentally, we believe the question to ask is, “If this were not an attempted suicide, would a request to withdraw care be reasonable?” We believe that under these circumstances, such withdrawal of life support, even in an individual who has attempted suicide, does not constitute physician assistance with suicide and is distinct from physician aid-in-dying in several important respects. (shrink)

Huang and colleagues provide some intriguing insights into the attitudes about end of life care of practising Taiwanese neonatal doctors and nurses.1 There are some similarities with surveys from other parts of the world. Most Taiwanese neonatologists and nurses agreed that it was potentially appropriate to withhold or limit treatment for infants who were dying. A very high proportion was opposed to active euthanasia of such infants. But there were also some striking differences. Only 21% of Taiwanese doctors ‘agreed’ with (...) withdrawal of mechanical ventilation for dying newborn infants. This proportion is lower than reported in any European country.2 More than 90% of neonatologists surveyed in the UK, the USA, The Netherlands and Sweden found withdrawal of mechanical ventilation acceptable.2 ,3 Taiwanese doctors also seemed reluctant to give analgesia or sedatives to such infants, with almost 60% disagreeing with their use in dying infants where there was a risk of hastening death.1 In contrast, two-thirds or more of European neonatologists thought this was acceptable .2The results of the survey of Huang et al highlight three beliefs about end-of-life care that are widespread, but all of which are seriously mistaken1. None are new, but …. (shrink)

End-of-life decision making is fraught with ethical challenges. Withholding or withdrawing life support therapy is widely considered ethical in patients with high treatment burden, poor premorbid status, or significant projected disability even when such treatment is not ?futile.? Whether such withdrawal of therapy in the aftermath of attempted suicide is ethical is not well established in the literature. We provide a clinical vignette and propose criteria under which such withdrawal would be ethical. We suggest that it is appropriate (...) to withdraw life support, regardless of the cause of the critical illness or disability, when the following criteria are met: (1) Surrogates request withdrawal of care and the adequacy of surrogates is confirmed, (2) an external reasonability standard is met, (3) passage of time, perhaps 72 hours, to allow certainty regarding the patient's wishes, and (4) psychiatric morbidity should be considered as grounds for withdrawal only in truly treatment-refractory cases. Fundamentally, we believe the question to ask is, ?If this were not an attempted suicide, would a request to withdraw care be reasonable?? We believe that under these circumstances, such withdrawal of life support, even in an individual who has attempted suicide, does not constitute physician assistance with suicide and is distinct from physician aid-in-dying in several important respects. (shrink)

Objectives To explore attitudes and reasoning among Swedish physicians and the general public regarding the withdrawal of life-sustaining treatment at a competent patient's request. Design A vignette-based postal questionnaire including 1202 randomly selected individuals in the county of Stockholm and 1200 randomly selected Swedish physicians with various specialities. The vignettes described patients requesting withdrawal of their life-sustaining treatment: (1) a 77-year-old woman on dialysis; (2) a 36-year-old man on dialysis; (3) a 34-year-old ventilator-dependent tetraplegic man. Responders were asked (...) to classify the act of terminating treatment and to prioritise arguments for/against. Results A majority in both groups prioritised arguments in favour of terminating treatment and classified the act as defensible in all vignettes. However, among the general public, 16% classified the act as euthanasia in all vignettes; among physicians this view was most expressed regarding ventilator treatment (26%). Some who classified the act as euthanasia prioritised arguments in favour of terminating treatment: among physicians 18% in vignette 1, 19% in vignette 2 and 34% in vignette 3; among the general public 35% in vignette 1, 20% in vignette 2 and 48% in vignette 3. Conclusion There is a widespread consensus regarding competent patients' right to abstain from life-sustaining treatment. An association between the hastening of death, caused by the withdrawal of life-sustaining treatment and the concept of euthanasia is proposed. The results also suggest that classifying the withdrawal of life-sustaining treatment as ‘euthanasia’ does not necessarily mean that the act is interpreted as ethically unacceptable. (shrink)

Since 1968, the irreversible loss of functioning of the whole brain, called brain death, is assimilated to individual’s death. The almost universal acceptance of this neurological criterion of death had decisive consequences for the contemporary medicine, such as the withdrawal of mechanical ventilation in these patients and organ retrieval for transplantation. The new criterion was successfully accepted in part because the assimilation of brain death state to death was presented by medicine --and acritically assumed by most of societies-- (...) as a scientific and objective fact. Nevertheless, many people do not think that the patients suffering brain death are actually dead. We show here that those people are not necessarily wrong. It can be argued that, in fact, the justification of the neurological criterion is not scientific but moral. We outline the thesis that the problem surrounding the vital status of brain dead patients is due to a confusion between factual and normative questions. Furthermore, we claim that the donation of organs and the withdrawal of life-support could be ethically acceptable even if the patients suffering brain death are considered as alive. As an alternative to the dead donor rule, we propose a justification for organ donation of brain-dead patients based on the (moral) concepts of harm and consent : what truly justifies the procurement of organs on those patients is not that they are dead, but that they wish to donate their organs and that, since they have irreversibly lost their brain, they cannot be harmed. (shrink)

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

Unfortunately, there is broad confusion regarding the justification for healthcare professionals unilaterally limiting or withdrawing life-prolonging interventions. Many mistakenly believe that suc...

In the United States, the decision of whether to withdraw or continue to provide artificial nutrition and hydration (ANH) for patients in a permanent vegetative state (PVS) is placed largely in the hands of surrogate decision-makers, such as spouses and immediate family members. This practice would seem to be consistent with a strong national emphasis on autonomy and patient-centered healthcare. When there is ambiguity as to the patient's advanced wishes, the presumption has been that decisions should weigh in favor of (...) maintaining life, and therefore, that it is the withdrawal rather than the continuation of ANH that requires particular justification. I will argue that this default position should be reversed. Instead, I will argue that the burden of justification lies with those who would continue artificial nutrition and hydration (ANH), and in the absence of knowledge as to the patient's advanced wishes, it is better to discontinue ANH. In particular, I will argue that among patients in PVS, there is not a compelling interest in being kept alive; that in general, we commit a worse violation of autonomy by continuing ANH when the patient's wishes are unknown; and that more likely than not, the maintenance of ANH as a bridge to a theoretical future time of recovery goes against the best interests of the patient. (shrink)

A number of influential reports on influenza pandemic preparedness include recommendations for extra-autonomous decisions to withdraw mechanical ventilation from some patients, who might still benefit from this technology, when demand for ventilators exceeds supply. An unintended implication of recommendations for nonvoluntary and involuntary termination of life support is that it make pandemic preparedness plans vulnerable to patients’ claims for assisted suicide and active euthanasia. Supporters of nonvoluntary passive euthanasia need to articulate why it is both morally different and morally (...) superior to voluntary active euthanasia if they do not wish to invite expansion of end-of-life options during health system catastrophe. (shrink)

In their target article, Childress et al provide a detailed analysis of dilemmas arising from disagreement between an ICU team and a competent patient (Mr J) about dis/continuation of extra-corpore...

BackgroundPublished data and practice recommendations on end-of-life care generally reflect Western practice frameworks; there are limited data on withdrawal of treatment for children in China.MethodsWithdrawal of treatment for children in the pediatric intensive care unit of a regional children’s hospital in eastern China from 2006 to 2017 was studied retrospectively. Withdrawal of treatment was categorized as medical withdrawal or premature withdrawal. The guardian’s self-reported reasons for abandoning the child’s treatment were recorded from 2011.ResultsThe incidence of (...) class='Hi'>withdrawal of treatment for children in the PICU decreased significantly; for premature withdrawal the 3-year average of 15.1% in 2006–2008 decreased to 1.9% in 2015–2017. The overall incidence of withdrawal of care reduced over the time period, and withdrawal of therapy by guardians was the main contributor to the overall reduction. The median age of children for whom treatment was withdrawn increased from 14.5 months in 2006 to 40.5 months in 2017. Among the reasons given by guardians of children whose treatment was withdrawn in 2011–2017, “illness is too severe” ranked first, accounting for 66.3%, followed by “condition has been improved”. Only a few guardians ascribed treatment withdrawal to economic reasons.ConclusionsThe frequency of withdrawal of medical therapy has changed over time in this children’s hospital PICU, and parental decision-making has been a large part of the change. (shrink)

The ever-debated question of triage and allocating the life-saving ventilator during the COVID-19 pandemic has been repeatedly raised and challenged within the ethical community after shortages propelled doctors before life and death decisions. The British Medical Association’s ethical guidance highlighted the possibility of an initial surge of patients that would outstrip the health system’s ability to deliver care “to existing standards,” where utilitarian measures have to be applied, and triage decisions need to maximize “overall benefit” In these emergency circumstances, triage (...) that “grades according to their needs and the probable outcomes of intervention” will prioritize or eliminate patients for treatment, and health professionals may be faced with obligations to withhold or withdraw treatments to some patients in favour of others. This piece is a response and extension to articles published on the manner of involvement for ethics and ethicists in pandemic triage decisions, particularly examining the ability and necessity of establishing triage committees to ameliorate scarce allocation decisions for physicians. (shrink)

Withdrawing Artificial Nutrition and Hydration in the neonatal intensive care units has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the stakeholders’ experience is, and whether they consider it ethically appropriate. In order to contribute to the debate, we initiated a study in 2009 to evaluate parental and health care professionals perspectives, after they experienced WAHN for a newborn. The study included 25 cases from 5 (...) different clinical neonatology departments. We interviewed both the parents and some of the HCP who cared for the baby, at least 6 months after this latter deceased. We proceeded through in-depth individual qualitative interviews. Content was analyzed for themes and patterns that emerged from the data. Some parents expressed that WANH offered an opportunity to the family to spend a few demedicalized days with the baby before she dies, without any tubes and machines, and to be well supported by the HCP during this palliative stage. But others evaluated the practice in retrospect as a terrible ordeal. All said that, at least, the time of waiting for death to ensue should not last too long. After a few days, it becomes unbearable because of the transformation of the baby’s appearance and because they, as parents, began to wonder if she was not dying from starvation rather than from her initial disease. An important proportion of HCP also expressed some kind of ethical unease. This was due to the psychological violence involved in the decision for a human being to stop feeding a little one, and also to the difficulty to deal with the fundamental intention behind the decision of WANH: indeed, could it be claim that it does not presuppose the intention of provoking the infant’s death? The discussion focuses on the point to know if WANH can be considered as a source of progress from an ethical point of view, particularly in comparison with earlier practices—that in France could involve active euthanasia by lethal injection. We argue that when HCP are merely focused on avoiding that WAHN could be construed as a way of intending to hasten the baby’s death, the practice is at risk to be implemented in a way that becomes ethically counterproductive. Focusing on this intention easily distract the clinical teams from what should be their ultimate concern, namely the baby’s comfort during the dying process, as well as the support owned to her parents. To conclude, we suggest that the ethical priorities, when WANH is decided, should be the support due to the patient and her family on the one hand, and, on the other hand to implement it in such a way that at least the baby seems to have died of her initial disease and never of starvation. This means that HCP have a duty to control the timing of death, even though this might be incompatible with the worry to avoid the intention of hastening the baby’s death. (shrink)