Within the caring science paradigm, variations of a method of interpretation inspired by the French philosopher Paul Ricoeur's theory of interpretation are used. This method consists of several levels of interpretation: a naïve reading, a structural analysis, and a critical analysis and discussion. Within this paradigm, the aim of this article is to present and discuss a means of creating distance in the interpretation and the text structure by using narration in a poetic language linked to the meaning of the (...) text. Ricoeur's ‘Hermeneutical function of distanciation’ will be introduced, and this concept of distanciation will be illustrated with reference to narrations from a study of patient's life experiences living with chronic illness and home mechanical ventilation in Denmark. Distanciation in the interpretation objectifies the text, and narration in a poetic language creates a particular kind of mediation in the interpretation. That narration represents an interpreted understanding of the whole, which facilitates an appropriate and evocative presentation of the interpreted data. This way of objectifying the text through narration can contribute yet another perspective to Ricoeur's rich and varied theory of interpretation. (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)

A goal of living as well as possible is central to practice and research with young adults living with home mechanical ventilation (HMV). Significant effort has been put into conceptualizing and measuring the quality of life (QOL) as a proxy for living well. Yet, dominant understandings of QOL have been influenced by normative, ableist, and biomedical discourses about what constitutes a good life that, when applied in practice and systems with those living with HMV, can contribute to exclusion and constrain (...) opportunities to live well. Inquiry into what certain understandings of living well can do is critical to opening up possibilities to reimagine living well with HMV. This paper draws on findings from a critical narrative inquiry that explored the experiences of five young adults (ages 18–40 years) living with HMV. Data were co‐constructed virtually through an initial interview and photo‐elicitation using participant‐generated photographs. A critical narrative analysis of participants' stories made visible the ideological effects of ableist, biomedical, and individualist discourses and how the young adults reproduced and resisted these dominant discourses. Their stories further opened up possibilities for nurses and other healthcare providers to see living well and QOL differently. (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)

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)

In the first wave of the COVID-19 pandemic, healthcare workers in some countries were forced to make distressing triaging decisions about which individual patients should receive potentially life-saving treatment. Much of the ethical discussion prompted by the pandemic has concerned which moral principles should ground our response to these individual triage questions. In this paper we aim to broaden the scope of this discussion by considering the ethics of broader structural allocation decisions raised by the COVID-19 pandemic. More specifically, we (...) consider how nations ought to distribute a scarce life-saving resource across healthcare regions in a public health emergency, particularly in view of regional differences in projected need and existing capacity. We call this the regional triage question. Using the case study of ventilators in the COVID-19 pandemic, we show how the moral frameworks that we might adopt in response to individual triage decisions do not translate straightforwardly to this regional-level triage question. Having outlined what we take to be a plausible egalitarian approach to the regional triage question, we go on to propose a novel way of operationalising the ‘save the most lives’ principle in this context. We claim that the latter principle ought to take some precedence in the regional triage question, but also note important limitations to the extent of the influence that it should have in regional allocation decisions. (shrink)

This issue of the Journal of Medical Ethics features a special symposium on ‘elective ventilation’ . EV ) was originally described in the 1990s by doctors working in Exeter in the UK.1 At that time there was concern about the large shortfall in organs for transplantation. Patients could become organ donors if they were diagnosed as being brain dead, but this only ever occurred in patients on breathing machines in intensive care who developed signs of brainstem failure. Doctors wondered if (...) there were patients dying outside intensive care who, if they were ventilated, could become brain dead and hence eligible to donate their organs. They embarked on a process of identifying patients who were dying who would not normally be taken to intensive care because their prognosis was judged to be too poor, and then ‘electing’ to insert breathing tubes when they stopped breathing.1 With the consent of family members the patients were supported in intensive care until they were diagnosed as having signs of brain death, or until the family and doctors together judged that this was unlikely to occur.1 The Exeter team saw a 50% increase in their numbers of organs for transplantation.Box 1 Definition of elective ventilation Elective ventilation is the provision to a patient of intensive medical treatment with the sole purpose of facilitating organ donation, in the absence of an expected medical benefit.EV was a controversial practice at the time. There were a number of papers written from points of view defending2 ,3 and criticising it.4 A Department of Health guideline in 1994 concluded that EV was not in the best interests of patients and was therefore unlawful5; subsequently, the practice effectively ceased.2 However, debate about EV has not …. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Death Perception:How Temporary Ventilator Disconnection Helped my Family Accept Brain Death and Donate OrgansThomas B. FreemanThe night of my nephew’s closed head injury in Boston, I was on call as a neurosurgeon at Tampa General Hospital. I was therefore not shocked at first when my telephone rang at four o’clock in the morning, but I soon understood the severity of the tragic news. The next half hour was (...) a blur of frantic phone calls and devastating decisions leading to surgery to remove a subdural hematoma from my nephew’s head, even though he was only two brain stem reflexes away from brain death.I thought that my experience as a neurosurgeon would somehow help me. However, when my sister–in–law asked me if this was just like the other tragic closed head injuries that I had seen in 26 years of practice, my answer was very simple: this was the only severe closed head injury I had ever seen—in my family. At this point, I was no longer a neurosurgeon. I was an uncle. My nephew’s closed head injury overwhelmed both his brain’s capacity to survive and my entire family’s ability to think rationally or objectively while grieving so intensely.It is in this context that we were asked to consider organ donation. The appeal for organ donation is one of altruism. My nephew’s parents agreed that organ donation would be an important way to honor their son’s life, allow him to make one final contribution to save the lives of several patients, and help to bring peace to the family.I will never forget, however, my niece’s distraught response. She is altruistic by nature, but was tremendously conflicted by the choice to donate her own brother’s organs. At this point, all discussions about organ donation stopped until we could understand the source of her conflict. Since she did not have legal authority regarding the final decision, some family members wondered if organ donation should be allowed if she could not come to terms with the choice. She felt isolated, because she was the only person in the room who was experiencing conflict. As a neurosurgeon, I have always advised other families in this situation that they may have more peace if they can make such decisions unanimously, regardless of who has the ultimate legal authority for decision–making. This helps bring healing to the family, eliminates disruption of family values and unity, and reduces possible feelings of guilt.I asked my niece what she was feeling. She stated something that I had never heard before as a neurosurgeon. She had listened to the words that her brother was brain dead, but she felt that he was somehow still alive, since he was breathing on a ventilator and his heart was beating. She felt powerless due to her inability to do anything more for [End Page 9] him. She also wanted to be there when her brother “died,” which she would recognize by the cessation of his heartbeat. She would not abandon her brother.I searched for a way to respect my niece’s wishes and her legitimate request, while preserving the ability to proceed with organ donation. Solving this conundrum proved to be a pivotal part of the beginning of both her mourning process and acceptance of his death.As an uncle, I experienced the clear dissociation that modern medicine creates between medical care and the natural human process of recognizing and accepting death. My family observed the subtle difference between a deep coma and brain death. They noticed that my nephew’s color had changed when his temperature dropped to 94o F before the heating blanket was placed. They perceived the decrease in muscle tone when he stopped breathing faster than the ventilator rate. Outside of that, there was no significant difference in his appearance when he was “alive” or “dead.”In spite of heroic measures and superlative surgical and medical care, his closed head injury progressed unremittingly until he became brain dead 36 hours later. The diagnosis of “brain death” was pronounced to the family. Accepting the death of someone who is... (shrink)

Covid‐19 confronts us with tragic choices, in which every option is unacceptable. On the New York State Task Force on Life and the Law, I worked on guidelines for such situations. We did not envision the scale or character of Covid‐19. To minimize fear that the decisions made in these situations might be unfair, we all must know what guidelines or mandates inform them. Only with transparency about how decisions will be made, by whom, and according to what requirements can (...) we have confidence that fairness prevails. We now face many related questions about process, goals, leadership, and trust. For example, how might ethical guidelines evolve as scientific understanding advances? Should guidelines vary with different venues? And if, as I have argued, judgment is necessary even with the best of guidelines, how can we prepare clinicians to make good judgments? Are there implications for better training of personnel in nonemergency times for what they might face in the worst of times? (shrink)

In this article, we discuss the case of Michael Johnson, an African-American man who sought treatment for respiratory distress due to COVID-19, but who was adamant that he did not want to be intubated due to his belief that ventilators directly cause death. This case prompted reflection about the ways in which a false belief can create uncertainty and complexity for clinicians who are responsible for evaluating decision-making capacity (DMC). In our analysis, we consider the extent to which Mr. Johnson (...) demonstrated capacity according to each of Appelbaum’s criteria. Although it was fairly clear that Mr. Johnson lacked DMC on the basis of both understanding and appreciation, we found ourselves reflecting upon the false belief that seemed to motivate his refusal. This led us to further consider the ways in which our current social and political environment can complicate evaluations of patients’ preferences and reasons for declining life-sustaining interventions. In particular, we consider the impact of the role of misinformation and systemic racism in preparing the grounds for false beliefs. (shrink)

RESUMEN Dentro de la enorme cantidad de temas reinantes relacionados con el desarrollo científico-tecnológico actual, se encuentra indudablemente el del empleo de la ventilación mecánica no invasiva como medida de soporte vital. Aunque no se trata de una obra especifica que presente un panorama completo y exacto, de todos y cada uno de los problemas relacionados con el empleo de la misma, los autores pretenden con el artículo realizar una breve reflexión del tema desde el enfoque de la ciencia, la (...) tecnología y la sociedad en el momento actual, de manera que constituya un marco útil para el examen de estos temas, su debate, reflexión e intercambio de opiniones en el contexto de los servicios de la salud. ABSTRACT Among the huge number of current issues related to the current scientific-technological development is undoubtedly the use of non-invasive mechanical ventilation as a measure of life support. Although it is not a specific work that presents a complete and accurate picture of each one of the problems related to the use of it. Authors intend with the article to make a brief reflection on the subject from the perspective of science, technology and society at the present time, so that it constitutes a useful framework for the examination of these issues, debate, reflection and exchange of opinions in the context of health services. (shrink)

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

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

Lower respiratory tract infections are a leading cause of paediatric morbidity and mortality worldwide. Children in low-income countries are disproportionately affected. This is in large part due to limitations in healthcare resources and medical technologies. Mechanical ventilation can be a life-saving therapy for many children with acute respiratory failure. The scarcity of functioning ventilators in low-income countries results in countless preventable deaths. Some hospitals have attempted to adapt to this scarcity by using hand-bag ventilation, as either a bridge to a (...) mechanical ventilator, or until clinical improvement occurs rendering mechanical ventilation no longer necessary. In instances of hand-bag ventilation, an endotracheal tube is first placed. Family members are then asked to play the role of a ventilator, manually compressing a bag repeatedly to inflate the child’s lungs. This approach is fraught with numerous ethical challenges. A careful examination of the data and a nuanced approach to the ethical considerations are imperative. Ethical arguments in support of and in opposition to allowing parental hand-bag ventilation are explored, including the best interests of the child, the child’s right to an open future, beneficence and parental protection, legitimising substandard care, and finally, contextual concerns. An algorithmic, potentially ethically permissible approach to parental participation in manual ventilation is proposed. (shrink)

The aim of this study was to explore the ethical challenges in home mechanical ventilation based on a secondary analysis of qualitative empirical data. The data included perceptions of healthcare professionals in hospitals and community health services and family members of children and adults using home mechanical ventilation. The findings show that a number of ethical challenges, or dilemmas, arise at all levels in the course of treatment: deciding who should be offered home mechanical ventilation, respect for patient and family (...) wishes, quality of life, dignity and equal access to home mechanical ventilation. Other challenges were the impacts home mechanical ventilation had on the patient, the family, the healthcare services and the allocation of resources. A better and broader understanding of these issues is crucial in order to improve the quality of care for both patient and family and assist healthcare professionals involved in home mechanical ventilation to make decisions for the good of the patient and his or her family. (shrink)

The research presented in this work represents reflections in the light of Julia Kristeva's philosophy concerning empirical data drawn from research describing the everyday life of people dependent on ventilators. It also presents a qualitative and narrative methodological approach from a person‐centred perspective. Most research on home ventilator treatment is biomedical. There are a few published studies describing the situation of people living at home on a ventilator but no previous publications have used the thoughts in Kristeva's philosophy (...) applied to this topic from a caring science perspective. The paper also addresses what a life at home on a ventilator may be like and will hopefully add some new aspects to the discussion of philosophical issues in nursing and the very essence of care. Kristeva's philosophy embraces phenomena such as language, abjection, body, and love, allowing her writings to make a fruitful contribution to nursing philosophy in that they strengthen, expand, and deepen a caring perspective. Moreover, her writings about revolt having the power to create hope add an interesting aspect to the work of earlier philosophers and nursing theorists. (shrink)

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

Meanings of living at home on a ventilator Nine adults were interviewed in order to illuminate the meanings of being dependent on a ventilator and living at home. The data were analysed using a phenomenological‐hermeneutic method inspired by the philosophy of Ricoeur. Five main themes emerged through the analysis: experiencing home as a safe and comfortable space from which to reach out, experiencing the body as being frail, brave and resilient, striving to live in the present, surrendering oneself (...) to and trusting others, and experiencing technology as a burden and a relief to the lived body. Meanings of being home on a ventilator were interpreted as maintaining autonomy and persistence in interaction with the ventilator and other human beings and being able to rise above yourself and your personal boundaries in order to live a good life. These meanings indicate that aesthetic and ethical values impact on the lived body. They are bound up with experiencing a vital force and interdependency, bringing safety and courage into daily life. (shrink)

The current debate regarding the suitability of anencephalics as organ donors is due primarily to misunderstandings. The anatomical and neurophysiological literature shows that the anencephalic lacks a cerebrum because of the failure of neuralplate fusion. However, even the incomplete function of an atrophic brain stem is currently accepted at law in most if not all countries as sufficient for brain life: which is to say, cessation of breathing is currently required in order to make the diagnosis of brain death. Because (...) of the extensive incompleteness of the anencephalic's brain, it is not possible to postpone death significantly by mechanical ventilation and intravenous feeding. It is acceptable to maintain life for a short period of time in order to allow organ transplantation subsequent to the declaration of death at the point of cessation of the capacity for spontaneous respiration. The most important issue is not transplantation, but the issue of brain life raised by the case of anencephalics. Since brain life in any significant sense begins only after the closure of the neural tube on the 30th day after conception, it is reasonable to take this as the point at which brain life begins. Laws should be amended in all countries to allow the abortion of anencephalics at any time, in that they do not at any time possess brain life. (shrink)

There is ongoing debate on how to fairly allocate scarce critical care resources to patients with COVID-19. The debate revolves around two views: those who believe that priority for scarce resources should primarily aim at saving the most lives (SML) or at saving the most life-years, and those who believe that public health should focus on health equity to address health disparities and social determinants of health. I argue that maximizing medical outcomes by saving the greatest number of patients is (...) not a plausible strategy for combating COVID-19. There are reasons of fairness to give each patient who can meet general eligibility requirements a chance of being saved. Rather than focusing on outcome maximization, a better solution would be the individualist lottery that takes account of probability of survival and duration of treatment. Although the individualist lottery allocates scarce resources in a fair way that is responsive to health equity concerns, it still gives considerable weight to the concern of SML. Thus, this procedure can be reasonably accepted by all key stakeholders. (shrink)

PurposeThe acute-on-chronic exacerbations of end-stage respiratory diseases often result in prolonged hospital stays, relating these events to ethical conflicts in the fields of medical futility and distributive justice. This study aimed to understand patients’ preferences for life-sustaining treatments when clinically stable and during regular follow-up visits, and to determine the factors that can influence these preferences.ProcedureThis was a prospective, observational, exploratory study using convenience sampling. Over a three-year period, the study enrolled 106 adult outpatients with end-stage pulmonary disease on long-term (...) oxygen treatment with/without noninvasive mechanical ventilation with dyspnoea scores of 6 or more in the modified Borg dyspnoea scale and one of the following: Gold stage IV, diffusing capacity <40%, heart failure ) stage III/IV, or systolic pulmonary artery... (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)

Policies promoted and adopted for allocating ventilators during the COVID-19 pandemic have often prioritised healthcare workers or other essential workers. While the need for such policies has so far been largely averted, renewed stress on health systems from continuing surges, as well as the experience of allocating another scarce resource—vaccination—counsel revisiting the justifications for such prioritisation. Prioritising healthcare workers may have intuitive appeal, but the ethical justifications for doing so and the potential harms that could follow require careful analysis. Ethical (...) justifications commonly offered for healthcare worker prioritisation for ventilators rest on two social value criteria: instrumental value, also known as the ‘multiplier effect’, which may preserve the ability of healthcare workers to help others, and reciprocity, which rewards past usefulness or sacrifice. We argue that these justifications are insufficient to over-ride the common moral commitment to value each person’s life equally. Institutional policies prioritising healthcare workers over other patients also violate other ethical norms of the healthcare professions, including the commitment to put patients first. Furthermore, policy decisions to prioritise healthcare workers for ventilators could engender or deepen existing distrust of the clinicians, hospitals and health systems where those policies exist, even if they are never invoked. (shrink)

Critical care medicine is suddenly, and unfortunately, in the news, with staggering numbers of COVID-19 patients requiring treatment in intensive care units around the world. Talk on the street, in those countries in which talk on the street is allowed, is of ventilators, ARDS, and cytokine storms—the overcharged immune response that itself is a killer. These technical terms are now in everyday use, and questions that have been restricted largely to critical care, infectious diseases, and public health specialists are being (...) commonly asked. If it turns out that ventilators will be in heavy use, will we have enough of them to cope with the first, and next, waves of the... (shrink)

Ethicists and physicians all over the world have been working on triage protocols to plan for the possibility that the Covid‐19 pandemic will result in shortages of intensive care unit beds, ventilators, blood products, or medications. In reflecting on those protocols, many health care workers have noticed that, outside the pandemic shortage situation, we routinely supply patients in the ICU with invasive and painful care that will not help the patients survive even their hospitalization. This is the kind of pointless (...) care that even the most basic protocol would triage against. Perhaps this widespread reflection on triage standards will draw our attention to our ongoing custom of supplying burdensome and inefficacious care to those near the end of life—care that most health care providers would not want for themselves. This essay argues that reflecting on triage could help us improve end‐of‐life care. (shrink)

Background: End-of-life decision-making for terminally ill neonates raises important legal and ethical issues. In Greece, no recent data on nurses’ attitudes and involvement in end-of-life decisions are available. Research question/aim: To investigate neonatal nurses’ attitudes and involvement in end-of-life decisions and the relation to their socio-demographic and work-related background data. Research design: A survey was carried out in 28 neonatal intensive care units between September 2018 and January 2019. A structured questionnaire was distributed by post. Participants and research context: The (...) questionnaire was answered anonymously by 312 nurses (response rate, 71.1%) and returned to the investigators. Ethical considerations: The study was approved by the Bioethics and Research Committee of Aretaieio Hospital in accordance with the Helsinki Declaration. Findings: Nurses more often reported involvement in various end-of-life decisions, such as continuation of treatment without adding further therapeutic interventions for terminally ill neonates, while less reported were mechanical ventilation withdrawal and drug administration to end life. Nurses with a high attitude score, reflecting a more quality-of-life approach, were more likely to be involved in setting limits to intensive care. α low score was consistent with life preservation. Nurses’ religiousness ( p = 0.097), parenthood ( p = 0.093), involvement in daily practice ( p = 0.03), and position on the existing legal framework ( p < 0.002) influenced their attitude score. Discussion: The likelihood of nurses to support interventions in neonates with poor prognosis in neonatal intensive care units was related to their attitudes. After adjusting for potential confounders, the most important predictors for nurses’ attitudes were parenthood, involvement in daily practice, and position supporting current legislation reform. Conclusion: Variability in involvement in end-of-life decisions among nurses exists on a national level. (shrink)

A deficit in the number of organs available for transplantation persists even with an increase in donation rates. One possible choice of donor for organs that appears under-referred and/or unaccepted is patients with primary brain tumours. In spite of advances in the treatment of high-grade primary central nervous system (CNS) tumours, the prognosis remains dire. A working group on organs from donors with primary CNS tumours showed that the risk of transmission is small and outweighs the benefits of waiting for (...) a normal donor, in survival and organ life-years, with caveats. This paper explores the possibility that, if information on organ donation were made available to patients and their families with knowledge of their inevitable fate, perhaps some will choose to donate. It would be explained that to achieve this, elective ventilation would be performed in their final moments. This would obviate the consent question because of an advance statement. It is accepted that these are sensitive matters and there will be logistic issues. This will need discussion with the public and other professionals, but it could increase the number of donors and can be extrapolated to encompass other primary CNS tumours. (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)

In this paper we defend that elective ventilation (EV), even if conceived as the instrument to maximise the chances of organ recovery, is mainly the means to provide the patient who is dying with a dignified death in several ways, one of them being the possibility of becoming an organ donor. Because EV does not harm the patient and permits the medical team a better assessment of the patient's clinical trajectory and a better management of the dying process by the (...) family, EV does not violate the principle of non-beneficence nor the principle of autonomy if we restrict the initiation of EV to those cases in which it is not known what the previous wishes of the patient were as regards to his or her care at the end of life. (shrink)

The COVID-19 pandemic has forced clinicians, policy-makers and the public to wrestle with stark choices about who should receive potentially life-saving interventions such as ventilators, ICU beds and dialysis machines if demand overwhelms capacity. Many allocation schemes face the question of whether to consider age. We offer two underdiscussed arguments for prioritising younger patients in allocation policies, which are grounded in prudence and fairness rather than purely in maximising benefits: prioritising one’s younger self for lifesaving treatments is prudent from an (...) individual perspective, and prioritising younger patients works to narrow health disparities by giving priority to patients at risk of dying earlier in life, who are more likely to be subject to systemic disadvantage. We then identify some confusions in recent arguments against considering age. (shrink)

It has recently been suggested by Shaw (2007) that the distinction between voluntary active euthanasia, such as giving a patient a lethal overdose with the intention of ending that patient's life, and voluntary passive euthanasia, such as removing a patient from a ventilator, is much less obvious than is commonly acknowledged in the literature. This is argued by suggesting a new perspective that more accurately reflects the moral features of end-of-life situations. The argument is simply that if we consider (...) the body of a mentally competent patient who wants to die, a kind of ‘unwarranted’ life support, then the distinction collapses. We argue that all Shaw has provided is a perspective that makes the conclusion that there is little distinction between voluntary active euthanasia and voluntary passive euthanasia only seemingly more palatable. In doing so he has yet to convince us that this perspective is superior to other perspectives and thus more accurately reflects the moral features of the situations pertaining to this issue. (shrink)

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

In this paper we defend that elective ventilation, even if conceived as the instrument to maximise the chances of organ recovery, is mainly the means to provide the patient who is dying with a dignified death in several ways, one of them being the possibility of becoming an organ donor. Because EV does not harm the patient and permits the medical team a better assessment of the patient's clinical trajectory and a better management of the dying process by the family, (...) EV does not violate the principle of non-beneficence nor the principle of autonomy if we restrict the initiation of EV to those cases in which it is not known what the previous wishes of the patient were as regards to his or her care at the end of life. (shrink)

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

PurposeAdvance directives have been criticized for failing to help physicians make decisions consistent with patients’ wishes. This pilot study sought to determine if an interactive, computer-based decision aid that generates an advance directive can help physicians accurately translate patients’ wishes into treatment decisions.MethodsWe recruited 19 patient-participants who had each previously created an advance directive using a computer-based decision aid, and 14 physicians who had no prior knowledge of the patient-participants. For each advance directive, three physicians were randomly assigned to review (...) the advance directive and make five to six treatment decisions for each of six (potentially) end-of-life clinical scenarios.From the three individual physicians’ responses, a “consensus physician response” was generated for each treatment decision (total decisions = 32). This consensus response was shared with the patient whose advance directive had been reviewed, and she/he was then asked to indicate how well the physician translated his/her wishes into clinical decisions.ResultsPatient-participants agreed with the consensus physician responses 84 percent (508/608) of the time, including 82 percent agreement on whether to provide mechanical ventilation, and 75 percent on decisions about cardiopulmonary resuscitation (CPR).Across the six vignettes, patient-participants’ rating of how well physicians translated their advance directive into medical decisions was 8.4 (range = 6.5-10, where 1 = extremely poorly, and 10 = extremely well). Physicians’ overall rating of their confidence at accurately translating patients’ wishes into clinical decisions was 7.8 (range = 6.1-9.3, 1 = not at all confident, 10 = extremely confident).ConclusionFor simulated cases, a computer-based decision aid for advance care planning can help physicians more confidently make end-of-life decisions that patients will endorse. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Helping a Muslim Family to Make a Life–and–Death Decision for Their Beloved Terminally Ill FatherBahar BastaniI live in a city in the Midwest with a population of around two million people. There are an estimated 2,000 Iranians living in this city, the vast majority of which belong to Shia sect of Islam. [End Page 190] However, the vast majority is also not very religious. Over the past two decades (...) that I have been living in this city, professionally in the capacity of a physician and university faculty at a school of medicine, and socially as one of the community leaders with a particular role in religious matters, I have acquired the trust of my community. Following one of my yearly routine travels to my homeland, Iran, I had just returned to work when I received a phone call from one of the Iranian community members. He informed me that his father was very ill and was hospitalized, and that the physicians had introduced the idea of stopping life support. The family was experiencing a significant emotional, moral and religious dilemma as to whether they could consent to this. I was requested by the patient’s children to help them make the right decision.I requested that the oldest son, who had called me, to ask the three other siblings and their mother to be present at the bedside of the patient that night, so that we could discuss the matters face–to–face. That same night, all requisite family members and myself gathered at the bedside of this 88–year–old husband and father, who had developed multi–organ failure, which commenced with an infection following a heart valve replacement, followed by bacteremia and sepsis. Moreover, the patient was hypotensive, had developed respiratory failure requiring intubation and artificial ventilation, and had also developed hematologic coagulation abnormalities secondary to sepsis. Because of the sepsis, hypotension, and multiple drugs, including antibiotics and vasopressors, his kidneys had also failed, and there was a need to start hemodialysis if his life was to be maintained. After speaking with the intensive care physicians who were taking care of this elderly gentleman, it became clear to me that further care was futile, and there was absolutely no hope for him to recover from his multiple organ failure. I presented all the facts that I had acquired to the family members, and expressed my own viewpoint that I agreed with those physicians and that further care of their beloved, terminally ill husband and father was futile and only extended his dying. My assurances made it easier for the family members, particularly for his four sons who were present, to come to the decision to withdraw life support. After I informed the intensive care physicians of the family’s decision, the patient was heavily sedated with morphine, and the intravenous fluids, antibiotics, vasopressors, and the ventilator machine were all stopped. Over the next several minutes, the patient developed agonal breathing, his blood pressure dropped to zero, and his heart stopped. During the last few minutes of his life, I held the hands of the family members, we all prayed Islamic prayers to bless his soul while departing from his body. The next day, I supported the family with funeral services that included the Islamic prayers for the dead, the ceremonial religious washing of the body of the deceased, and the ceremonial religious burial.The dilemma that this family faced was multi-factorial: (1) the children had spent all of their adult life in America, and were unfamiliar with Islamic end of life and funeral traditions; (2) they had been asked by their father’s physicians to make a decision regarding the withdrawal of life support, which posed a moral and ethical dilemma; (3) they did not know whether it was religiously acceptable to withdraw life support; and (4) they did not know what type of funeral service would be acceptable to the religious beliefs of their deceased father.My presence as a trusted community leader, physician and religious leader was reassuring to the family members that the decision to stop life support for their loved one with a terminal illness and multiple organ... (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)

It is widely accepted in clinical ethics that removing a patient from a ventilator at the patient’s request is ethically permissible. This constitutes voluntary passive euthanasia. However, voluntary active euthanasia, such as giving a patient a lethal overdose with the intention of ending that patient’s life, is ethically proscribed, as is assisted suicide, such as providing a patient with lethal pills or a lethal infusion. Proponents of voluntary active euthanasia and assisted suicide have argued that the distinction between killing (...) and letting die is flawed and that there is no real difference between actively ending someone’s life and "merely" allowing them to die. This paper shows that, although this view is correct, there is even less of a distinction than is commonly acknowledged in the literature. It does so by suggesting a new perspective that more accurately reflects the moral features of end-of-life situations: if a patient is mentally competent and wants to die, his body itself constitutes unwarranted life support unfairly prolonging his or her mental life. (shrink)

Bioethics, and indeed much ethicalwriting generally, makes its point throughnarratives. The religious parable no less thanthe medical teaching case uses a simple storyto describe appropriate action or theapplication of a critical principle. Whilepowerful, the telling story has limits. In thispaper the authors describe a simple teachingcase on ``end-of-life'' decision making that wasill received by its audience. The authors ill-receivedexample, involving the disconnection ofventilation in a patient with ALS (Lou Gherig'sDisease) was critiqued by audience members withlong-term experience as ventilation users. Inthis (...) case, the supposedly simple narrative ofthe presenters conflicted with the lifehistories of the audience. The lessons of thisstory, and the conflict that resulted, speakcritically to the limits of simple teachingcases as well as the strengths of narrativeanalysis as a tool for the exploration ofbioethical case histories. (shrink)

Elective ventilation (EV) is ventilation—not to save a patient's life, but with the expectation that s/he will die—in the hope that organs can be retrieved in the best possible state. The arguments for doing such a thing rest on the value of the lives being saved by the donated organs, maximally honouring the donor's wishes where the patient can be reasonably thought to wish to donate, and a general principle in favour of organ donation where possible as an expression of (...) human solidarity. Arguments against include difficulties surrounding the patient's consent to donation (including the risk of them surviving in an unacceptably bad state), the possibility of changing our perception of organ donation and care in dying, and the moral distress potentially caused to intensive care unit (ICU) staff involved in EV. EV can occur before or after the patient is declared dead and it is EV before the declaration of death (EVb) that occasions the ethical worries. I argue that when we acknowledge the tragedy involved, attend sensitively to the grief proper to human death, and ensure that we are not working in an ethical and legal climate that increases the likelihood of inadvertent survival in an unacceptably bad state, EVb is ethically defensible. (shrink)

Purpose The debate about the end-of-life care decision is becoming a serious ethical and legal concern in the Far-Eastern countries of Korea, China and Japan. However, the issues regarding end-of-life care will reflect the cultural background, current medical practices and socioeconomic conditions of the countries, which are different from Western countries and between each other. Understanding the genuine thoughts of patients who are critically ill is the first step in confronting the issues, and a comparative descriptive study of these perspectives (...) was conducted by collaboration between researchers in all three countries. Methods Surveys using self-reporting paper questionnaire forms were conducted from December 2008 to April 2009 in Korea (six hospitals in two regions), China (five hospitals in four regions) and Japan (nine hospitals in one region). The subjects were patients who were critically ill who had been diagnosed as having cancer. A total of 235 participants (Korea, 91; China, 62; Japan, 52) were eventually recruited and statistically analysed. Results Most respondents had sometimes or often thought of their own death, mostly fear of ‘separation from loved ones’. They wanted to hear the news regarding their own condition directly and frankly from the physician. A quarter of them preferred making end-of-life care decisions by themselves, while many respondents favoured a ‘joint decision’ with their family members. The most favoured proxy decision maker was the spouse, followed by the children. Most admitted the necessity of ‘advance directives’ and agreed with artificial ventilation withdrawal in irreversible conditions. The most common reason was ‘artificial prolongation of life is unnecessary’. Most respondents agreed with the concept of active euthanasia; however, significant differences were sometimes observed in the responses according to variables such as patient's country of origin, age, gender and education level. Conclusion Patients in Far-Eastern countries gave various responses regarding end-of-life care decisions. Although familial input is still influential, most patients think of themselves as the major decision maker and accept the necessity of advance directives with Westernization of the society. Artificial ventilation withdrawal and even active euthanasia may be acceptable to them. (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)

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)

Medical and nursing personnel have an obligation to provide the medication necessary for every patient’s pain relief. This includes patients whose life-supporting mechanical ventilation is being removed, who may not exhibit traditional signs of pain or dyspnea. The purpose of this paper is not to argue a position on withdrawing life support. Rather, it argues that nurses and physicians have an obligation to provide pain-relieving medication, such as opiates, when life support is removed, to ensure that those entrusted to their (...) care do not experience pain or significant distress. This is based on the principle of double effect, by which two actions, one intended and one unintended, may be permissible if there is a proportionate reason. The goal in these situations is never to hasten death intentionally but to make patients’ pain and suffering tolerable as a matter of compassionate and loving care. (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)

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)

In the mid 1980s it was apparent that the need for organ donors exceeded those willing to donate. Some University of Pittsburgh Medical Center (UPMC) physicians initiated discussion of possible new organ donor categories including individuals pronounced dead by traditional cardiac criteria. However, they reached no conclusion and dropped the discussion. In the late 1980s and the early 1990s, four cases arose in which dying patients or their families requested organ donation following the elective removal of mechanical ventilation. Controversy surrounding (...) these cases precipitated open discussion of the use of organ donors pronounced dead on the basis of cardiac criteria. Prolonged deliberations by many committees in the absence of precedent ultimately resulted in what is, to our knowledge, the country's first policy for organ donation following elective removal of life support. The policy is intricate and conservative. Care was taken to include as many interested parties as possible in an effort to achieve representative and broad based support. This paper describes the development of the UPMC policy on non-heart-beating organ donation. (shrink)