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)

Currently in Japan, discontinuing an invasive mechanical ventilator (IMV) is illegal; therefore IMV-related decision making is a crucial issue. This study examined IMV decision-making factors and psychological conflict in 50 patients with amyotrophic lateral sclerosis. The Herth Hope Index was used for the assessment of pre- and post-IMV conflict. Interviews identified some decision-making factors: patient’s decision, patient’s and family’s mutual decision, family’s decision, and emergency-induced without patient’s or family’s consent. Participants who experienced no IMV-related regret received sufficient prior IMV (...) education from physicians and nurses, and time for reflection and family consultation. Their hope was similar to their pre-onset levels. Patients who received no prior IMV education accepted treatment as a natural progression. Their hope levels were lower than pre-onset. Those who received only a brief prior IMV explanation rejected the ventilator, experiencing regret if they were given an emergency IMV. Their hope levels were among the lowest. However, some of these patients managed to overcome their regret through being helped by nurses. Sufficient physician explanation and nursing advocacy for autonomous patient decision making are critical for improving hope in this patient group. (shrink)

KARLSSON V, LINDAHL B and BERGBOM I. Nursing Inquiry 2012; 19: 247–258 Patients’ statements and experiences concerning receiving mechanical ventilation: a prospective video‐recorded studyProspective studies using video‐recordings of patients during mechanical ventilator treatment (MVT) while conscious have not previously been published. The aim was to describe patients’ statements, communication and facial expressions during a video‐recorded interview while undergoing MVT. Content analysis and hermeneutics inspired by the philosophy of Gadamer were used. The patients experienced almost constant difficulties in (...) breathing and lost their voice. The most common types of communication techniques patients used were nodding or shaking the head. Their expressions were interpreted as stiffened facial expression, tense body position and feelings of sadness and sorrow. Nursing care for patients’ conscious during MVT is challenging as it creates new demands regarding the content of the care provided. In caring for patients undergoing MVT while conscious, establishing a caring relationship, making patients feel safe and helping them to communicate seem to be most important for alleviating discomfort and instilling hope. (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 (...) class='Hi'>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)

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)

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)

Expiratory flow limitation (EFL) can occur in mechanically ventilated patients with chronic obstructive pulmonary disease and other disorders. It leads to dynamic hyperinflation with ensuing deleterious consequences. Detecting EFL is thus clinically relevant. Easily applicable methods however lack this detection being routinely made in intensive care. Using a simple mathematical model, we propose a new method to detect EFL that does not require any intervention or modification of the ongoing therapeutic. The model consists in a monoalveolar representation of the respiratory (...) system, including a collapsible airway that is submitted to periodic changes in pressure at the airway opening: EFL provokes a sharp expiratory increase in the resistance Rc of the collapsible airway. The model parameters were identified via the Levenberg-Marquardt method by fitting simulated data on the airway pressure and the flow signals recorded in 10 mechanically ventilated patients. A sensitivity study demonstrated that only 8/11 parameters needed to be identified, the remaining three being given reasonable physiological values. Flow-volume curves built at different levels of positive expiratory pressure, PEEP, during PEEP trials (stepwise increases in positive end-expiratory pressure to optimize ventilator settings) have shown evidence of EFL in three cases. This was concordant with parameter identification (high Rc during expiration for EFL patients). We conclude from these preliminary results that our model is a potential tool for the non-invasive detection of EFL in mechanically ventilated patients. (shrink)

Conducting clinical research on subjects admitted to intensive care units is challenging, as they frequently lack the capacity to provide informed consent due to multiple factors including intensive care unit acquired delirium, coma, the need for sedation, or underlying critical illness. However, the presence of one or more of these characteristics does not automatically designate a potential subject as lacking capacity to provide their own informed consent. We review the ethical issues involved in obtaining informed consent for medical research from (...) mechanically ventilated, critically ill patients, in addition to the concerns that may arise when a legally authorized representative is asked to provide informed consent on behalf of these patients. (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)

In a severe influenza pandemic, hospitals will likely experience serious and widespread shortages of patient pulmonary ventilators and of staff qualified to operate them. Deciding who will receive access to mechanical ventilation will often determine who lives and who dies. This prospect raises an important question whether pandemic preparedness plans should include some process by which individuals affected by ventilator rationing would have the opportunity to appeal adverse decisions. However, the issue of appeals processes to ventilator rationing decisions (...) has been largely neglected in state pandemic planning efforts. If we are to devise just and effective plans for coping with a severe influenza pandemic, more attention to the issue of appeals processes for pandemic ventilator rationing decisions is needed. Arguments for and against appeals processes are considered, and some suggestions are offered to help efforts at devising more rational pandemic preparedness plans. (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)

COVID-19 is a highly contagious infection with no proven treatment. Approximately 2.5% of patients need mechanical ventilation while their body fights the infection.1 Once COVID-19 patients reach the point of critical illness where ventilation is necessary, they tend to deteriorate quickly. During the pandemic, patients with other conditions may also present at the hospital needing emergency ventilation. But ventilation of a COVID-19 patient can last for 2–3 weeks. Accordingly, if all ventilators are in use, there (...) will not be time for patients to ‘queue up’ to wait for those who arrived earlier to recover. Those who need a ventilator will die if they do not receive access to one quickly. Many nations now face the prospect that they failed to prepare appropriately for this foreseen risk of pandemic (another issue worthy of legal analysis) and that their populations will need far more ventilators than the health service can supply. For many weeks, the UK has been anticipating a surge of COVID-19 infections that could leave patients queuing in hospitals for ICU care. Luckily, social distancing has ‘flattened the curve’ and this problem might not arise. There is still a degree of risk, however, and other countries will not be so lucky. At some point, during this pandemic or the next, all countries will need to answer hard questions about whether and when scarce ICU resources (such as ventilators, beds and staff) should be either withheld or withdrawn from certain groups of patients solely for the purpose of providing them to others. Attempts to answer these questions can be found in a wide range of ICU triage protocols and ethical guidance documents, many of which embrace the foundational principle of ‘save the most lives’. Unfortunately, this worthwhile goal has generated many suggestions that could violate the law. This article identifies …. (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)

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)

This essay examines the management of ventilatory failure in disaster settings where clinical needs overwhelm available resources. An ethically defensible approach in such settings will adopt a “sufficiency of care” perspective that is: (1) adaptive, (2) resource-driven, and (3) responsive to the values of populations being served. Detailed, generic, antecedently written guidelines for “ventilator triage” or other management issues typically are of limited value, and may even impede ethical disaster response if they result in rescuers’ clumsily interpreting events through the (...) lens of the guideline, rather than customizing tactics to the actual context. Especially concerning is the tendency of some expert planners to mistakenly assume that medical treatment of respiratory failure: (1) always requires full-feature mechanical ventilators, (2) will always occur in hospitals, and (3) can be planned in advance without sophisticated public consultation about likely ethical dilemmas. (shrink)

Background: Decisions regarding whether or not to institute mechanical ventilation during the later stages of chronic obstructive pulmonary disease is challenging both ethically, emotionally and medically. Caring for these patients is a multifaceted process where nurses play a crucial role. Research question and design: We have investigated how nurses experienced their own role in decision-making processes regarding mechanical ventilation in later stages of chronic obstructive pulmonary disease and how they consider the patients’ role in these processes. (...) We applied a qualitative approach, with six focus-group interviews of nurses (n = 26). Ethical considerations: The Regional Committees for Medical and Health Research Ethics approved the study. Voluntary informed consent was obtained. Findings: The nurses found themselves operating within a cure-directed treatment culture wherein they were unable to stand up for the caring values. They perceived their roles and responsibilities in decision-making processes regarding mechanical ventilation to patients as unclear and unsatisfactory. They also experienced inadequate interdisciplinary cooperation. Discussion: Lack of communication skills, the traditional hierarchical hospital culture together with operating in a medical-orientated treatment culture where caring values is rated as less important might explain the nurses’ absence in participation in the decision about mechanical ventilation. Conclusion: To be able to advocate for the patients’ and their own right to be included in decision-making processes, nurses need an awareness of their own responsibilities. This requires personal courage, leadership who are capable of organising common interpersonal meetings and willingness on the part of the physicians to include and value the nurses’ participation in decision-making processes. (shrink)

In response to the COVID‐19 pandemic philosophers and governments have proposed scarce resource allocation guidelines. Their purpose is to advise healthcare professionals on how to ethically allocate scarce medical resources. One challenging feature of the pandemic has been the large numbers of patients needing mechanical ventilatory support. Guidelines have paradigmatically focused on the question of what doctors should do if they have fewer ventilators than patients who need respiratory support: which patient should get the ventilator? There is, however, an (...) important higher level allocation problem. Namely, how are we to ethically distribute newly obtained ventilators across hospitals: which hospital should get the ventilator(s)? In this paper, we identify a set of principles for allocating newly obtained ventilators across hospitals. We focus particularly on low and middle income countries, who frequently have limited pre‐existing intensive care capacity, and have needed to source additional ventilators. We first provide some background. Second, we argue that the main population healthcare aim during the COVID‐19 pandemic should be to save the most lives. Next, we assess a series of potential heuristics or principles that could be used to guide allocation: allocation to the most densely populated cities, random allocation, allocation based on the ratio of patients to ICU personnel, prioritisation in terms of intrahospital mortality, prioritisation of younger populations, and prioritisation in terms of population mortality. We conclude by providing a plausible ranking of the principles, while noting a number of epistemological challenges, in terms of how they best further the aim of increasing the probability of saving the most lives. (shrink)

One of the societal problems in a new influenza pandemic will be how to use the scarce medical resources that are available for prevention and treatment, and what medical, epidemiological and ethical justifications can be given for the choices that have to be made. Many things may become scarce: personal protective equipment, antiviral drugs, hospital beds, mechanical ventilation, vaccination, etc. In this paper I discuss two general ethical principles for priority setting (utility and equity) and explain how these (...) principles will often point in diverging directions. Moreover, each of these principles can be understood in different, again often competing, ways. Notwithstanding these controversies and conflicts, in the context of pandemic response there are at least some points of convergence: several policies can be justified by appeal to different ethical principles and theories. Convergence may be found with respect to a focus on saving the most lives (instead of other aggregative accounts); giving priority antiviral prophylaxis and therapy for life-saving pandemic responders; and, partly depending on epidemiology of the pandemic, to prioritise vaccination of children. Although decision-making about access to intensive care will involve choices with immediate tragic implications, the ethical complexity of these choices is relatively modest (although decisions will not be easy): there are persuasive moral reasons for giving priority to patients who are expected to benefit most within the shortest time. Finally, in the last section I tentatively argue that constraints on people’s freedom, as necessary for an effective public health approach, may support giving somewhat more weight to saving the most lives, than to concerns of equity. (shrink)

In coal mining industry, the running state of mine ventilators plays an extremely significant role for the safe and reliable operation of various industrial productions. To guarantee the better reliability, safety, and economy of mine ventilators, in view of early detection and effective fault diagnosis of mechanical faults which could prevent unscheduled downtime and minimize maintenance fees, it is imperative to construct some viable mathematical models for mine ventilator fault diagnosis. In this article, we plan to establish a data-based (...) mine ventilator fault diagnosis method to handle situations where engineers are absent or they are incapable of coming to a conclusion from multisource data. In the process of building the mine ventilator fault diagnosis model, considering that probabilistic rough sets could reduce the errors triggered by incompleteness, inconsistency, and inaccuracy without needing any additional assumptions and Pythagorean fuzzy multigranulation rough sets over the two universes’ model could effectively handle data representation, fusion, and analysis issues, we generalize the existing PF MGRSs over the two universes’ model to the PRS setting, as well as to further establish a novel model named Pythagorean fuzzy multigranulation probabilistic rough sets over two universes. In the granular computing paradigm, three types of PF MG-PRSs over two universes based on the risk attitude of engineers are proposed at first. Afterwards, several basic propositions of the newly proposed model are explored. Moreover, a PF multigranulation probabilistic model for mine ventilator fault diagnosis based on PF MG-PRSs over two universes is investigated. At last, a real-world case study of dealing with a mine ventilator fault diagnosis problem is given to illustrate the practicality of the presented model, and a validity test, a sensitivity analysis, and a comparison analysis are further explored to demonstrate the effectiveness of the presented model. (shrink)

Providing food and water, even by tube, is in principle an ordinary and proportionate means of preserving life. The Congregation for the Doctrine of the Faith made that clear in its August 1, 2007 statement on the matter. However, a pressing question remains: What about oxygen? Food and water are necessary for life. Is not oxygen equally necessary? So why did the CDF not also declare the use of a mechanical ventilator to be in principle an ordinary and proportionate (...) means of preserving life? Conversely, if the use of a ventilator is extraordinary means, then why is the artificial provision of food and water proportionate means? Is there an inconsistency here? The author argues that there is not. (shrink)

In this paper, a mathematical model of the respiratory mechanics is used to reproduce experimental signal waveforms acquired from three newborn lambs. As the main challenge is to determine specific lamb parameters, a sensitivity analysis has been realized to find the most influent parameters, which are identified using an evolutionary algorithm. Results show a close match between experimental and simulated pressure and flow waveforms obtained during spontaneous ventilation and pleural pressure variations acquired during the application of positive pressure, since (...) root mean square errors equal to 0.0119, 0.0052 and 0.0094. The identified parameters were discussed in light of previous knowledge of respiratory mechanics in the newborn. (shrink)

Mr. M. was a 77-year-old decisionally incapacitated long-term nursing home resident with chronic schizophrenia who was admitted to the hospital with a bacterial pneumonia. His past medical history was notable for deteriorating functional status over the past 2-3 years, urinary retention requiring chronic indwelling bladder catheterization, and two recent hospitalizations for urinary tract infections leading to sepsis. He developed respiratory failure soon after admission and was intubated and placed on mechanical ventilation. Follow-up studies suggested worsening pneumonia and acute (...) respiratory distress syndrome, as well as worsening kidney function. (shrink)

The COVID-19 coronavirus pandemic raises a host of challenging ethical questions at every level of society. However, some of the most acute questions relate to decision making in intensive care. The problem is that a small but significant proportion of patients develop severe viral pneumonitis and respiratory failure. It now seems likely that the number of critically ill patients will overwhelm the capacity of intensive care units (ICUs) within many health systems, including the National Health Service in the UK. The (...) experience of Northern Italy—a couple of weeks ahead of the UK, suggests that it will simply not be possible to provide mechanical ventilation to every patient who might need it. When the crunch comes, the unpalatable question facing clinicians is which patient to save. There are some obvious strategies to avoid or reduce the problem—through measures to increase intensive care capacity, and via society-level interventions to reduce the spread of the virus. These are vitally important, but unfortunately they are unlikely to prevent the problem of demand outstripping supply from occurring. What, then, should clinicians do? How should they allocate the scarce resource of intensive care—particularly over the coming weeks as the crisis escalates? There are different values at stake in triage decisions, but at a basic level the key values are those of benefit and …. (shrink)

Amyotrophic lateral sclerosis (ALS; also called motor neuron disease) is a devastating medical condition that progressively robs patients of their ability to move, speak and eventually breathe. At present, many physicians are hesitant to propose tracheostomy and respiratory support in the terminal phase of ALS. In accordance with the principle of patient autonomy, physicians should respect the right of the ALS patient to accept or refuse any treatment, including mechanical ventilation. Also, in environments where euthanasia or physician-assisted death (...) is legal, such requests can be acceptable. At least two conditions are necessary for full autonomy. To have a claim on full autonomy, people need to have intact cognitive abilities, and to exercise this right they must be able to communicate. In the past, the first condition was in doubt (indeed, overlap with other neurodegenerative diseases is sometimes suspected and some patients with ALS are thought to have associated frontotemporal dementia) and the second was severely compromised in patients with devastating motor impairment (communication being limited to the twitch of a finger or the blink of an eye). In this issue of J Neurol Neurosurg Psychiatry, Lakerveld and colleagues1 investigated cognition in 11 patients with late stage ALS (see page 25). They showed preserved cognitive functioning (ie, language, executive function, intelligence, learning and long term memory) compared with healthy controls. Assessments were exclusively based on a ‘‘yes–no’’ response mode. Because of the absence of verbal and motor communication, the neuropsychological assessment of these patients is complicated, and adapted testing is needed. By using a ‘‘yes–no’’ response mode based on the remaining motor abilities of the patient, this study proves the possibility of assessing patients with minimal motor capacities. (shrink)

Objective: Pulmonary complications could badly affect the recovery of neurological function and neurological prognosis of neurological critically ill patients. This study evaluated the effect of high-flow nasal cannula therapy on decreasing pulmonary complications in neurologically critically ill patients.Patients and Methods: The patients admitted to the intensive care unit with serious neurological disease and receiving oxygen therapy were retrospectively reviewed. Patients were divided into the HFNC group and the conventional oxygen therapy group. We analyzed the data within these two groups, including (...) patients’ baseline data, short-term outcomes of respiratory complications, general outcomes including hospital stay, ICU stay and mortality, and neurological functions. To analyze the relevant factors, we performed multivariable logistic regression analysis.Results: A total of 283 patients met the criteria, including 164 cases in the HFNC group and 119 cases in the COT group. The HFNC group had remarkably less mechanical ventilation requirement with lower phlegm viscosity. Even more, ICU stay and total hospital stay were significantly shortened in the HNFC group.Conclusion: HFNC decreased pulmonary complications in neurologically critically ill patients and improved recovery of neurological function and neurological prognosis. (shrink)

Several prominent cases have recently highlighted tension between the interests of individuals and those of the broader population in gaining access to health care resources. The care of Helga Wanglie, an elderly woman whose family insisted on continuing life support long after she had lapsed into a persistent vegetative state, cost approximately $750,000, the majority of which was paid by a Medi-gap policy purchased from a health maintenance organization. Similarly, Baby K was an anencephalic infant whose mother, believing that all (...) life is precious regardless of its quality, insisted that the hospital where her daughter was born provide mechanical ventilation, including intensive care, whenever respiratory distress threatened her life. Over the hospital's objections, courts ruled that aggressive care must be provided. Much of Baby K's care was covered by her mother's HMO policy. In the 1993 case of Fox v. HealthNet, a jury awarded $89 million to the family of a woman whose HMO had refused, as experimental, coverage for autologous bone marrow transplant in treating her advanced breast cancer. (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)

The determination of death by neurological criteria remains controversial scientifically, culturally, and legally, worldwide. In the United Kingdom, although the determination of death by neurological criteria is not legally codified, the Code of Practice of the Academy of Medical Royal Colleges is customarily used for neurological death determination and treatment withdrawal. Unlike some states in the US, however, there are no provisions under the law requiring accommodation of and respect for residents' religious rights and commitments when secular conceptions of death (...) based on medical codes and practices conflict with a traditional concept well-grounded in religious and cultural values and practices. In this article, we analyse the medical, ethical, and legal issues that were generated by the recent judgement of the High Court of England and Wales in Re: A [2015] EWHC 443. Mechanical ventilation was withdrawn in this case despite parental religious objection to a determination of death based on the code of practice. We outline contemporary evidence that has refuted the reliability of tests of brainstem function to ascertain the two conjunctive clinical criteria for the determination of death that are stipulated in the code of practice: irreversible loss of capacity for consciousness and somatic integration of bodily biological functions. We argue that: the tests of brainstem function were not properly undertaken in this case; the two conjunctive clinical criteria set forth in the code of practice cannot be reliably confirmed by these tests in any event; and absent authentication of the clinical criteria of death, the code of practice wrongly invokes a secular definition of death based on the loss of personhood. Consequently, the moral obligation of a pluralistic society to honor and respect diverse religious convictions to the greatest extent possible is being violated. Re A is contrasted with the US case of Jahi McMath in which the court accommodated parental religious objection to the determination of neurological death codified in the Uniform Determination of Death Act. We conclude that the legal system in the United Kingdom should not favour a secular definition of death over a definition of death that is respectful of religious values about the inviolability and sanctity of life. We recommend the legal recognition of religious accommodation in death determination to facilitate cultural sensitivity and compassionate care to patients and families in a pluralistic society. (shrink)

Spinal muscular atrophy (SMA) type 1 is a genetic neuromuscular disease in children that leads to degeneration of spinal cord motor neurons. This sometimes results in severe muscular paralysis requiring mechanical ventilation to sustain the child’s life. The onset of SMA type 1, the most severe form of the disease, is during the first year of life. These children become severely paralysed, but retain their intellectual capacity. Ethical concerns arise when mechanical ventilation becomes necessary for survival. (...) When professionals assess the resulting life for the child and family, they sometimes fear it will result in unreasonably excessive care. The aim of this article is to present an analysis of ethical arguments that could support or oppose the provision of invasive ventilation in this population. This examination is particularly relevant as France is one of the few countries performing tracheotomies and mechanical ventilation for this condition. (shrink)

Background: Despite a gradual shift in the focus of medical care among terminally ill patients to a palliative model, studies suggest that many children with life-limiting chronic illnesses continue to die in hospital after prolonged periods of inpatient admission and mechanical ventilation.Objectives: To examine the characteristics and location of death among hospitalised children, investigate yearwise trends in these characteristics and test the hypothesis that professional ethical guidance from the UK Royal College of Paediatrics and Child Health would lead (...) to significant changes in the characteristics of death among hospitalised children.Methods: Routine administrative data from one large tertiary-level UK children’s hospital was examined over a 7-year period for children aged 0–18 years. Demographic details, location of deaths, source of admission , length of stay and final diagnoses were studied. Statistical significance was tested by the Kruskal–Wallis analysis of ranks and median test , χ2 test and Cochran–Armitage test .Results: Of the 1127 deaths occurring in hospital over the 7-year period, the majority were among infants. The main diagnoses at death included congenital malformations , perinatal diseases , cardiovascular disorders and neoplasms . Most deaths occurred in an intensive care unit environment , with a significant increase over the years . There was a clear increase in the proportion of admissions from in-hospital among the ICU cohort . Infants with congenital malformations and perinatal conditions were more likely to die in an ICU , and older children with malignancy outside the ICU . Children stayed for a median of 13 days on a hospital ward before being admitted to an ICU where they died.Conclusions: A greater proportion of hospitalised children are dying in an ICU environment. Our experience indicates that professional ethical guidance by itself may be inadequate in reversing the trends observed in this study. (shrink)

In the twenty-first century, decisions to withhold or withdraw life-supporting measures commonly precede death in the neonatal intensive care unit without major ethical controversy. However, caregivers often feel much greater turmoil with regard to stopping medical hydration and nutrition than they do when considering discontinuation of mechanical ventilation or circulatory support. Nevertheless, forgoing medical fluids and food represents a morally acceptable option as part of a carefully developed palliative care plan considering the infant’s prognosis and the burdens of (...) continued treatment. Decisions to stop any form of life support should focus on the clinical circumstances, not the means used to sustain life. (shrink)

This paper develops a philosophical account of moral disruption. According to Robert Baker (2013), moral disruption is a process in which technological innovations undermine established moral norms without clearly leading to a new set of norms. Here I analyze this process in terms of moral uncertainty, formulating a philosophical account with two variants. On the Harm Account, such uncertainty is always harmful because it blocks our knowledge of our own and others’ moral obligations. On the Qualified Harm Account, there is (...) no harm in cases where moral uncertainty is related to innovation that is “for the best” in historical perspective, or where uncertainty is the expression of a deliberative virtue. The two accounts are compared by applying them to Baker’s historical case of the introduction of mechanical ventilation and organ transplantation technologies, as well as the present-day case of mass data practices in the health domain. (shrink)

The organ transplantation enterprise is morally flawed. “Brain‐dead” donors are the primary source of solid vital organs, and the transplantation enterprise emphasizes that such donors are dead before organs are removed—or in other words that the dead donor rule is followed. However, individuals meeting standard diagnostic criteria for brain death—unresponsiveness, brainstem areflexia, and apnea—are still living, from a physiological perspective. Therefore, removing vital organs from a heart‐beating, mechanically ventilated donor is lethal. But neither donors nor surrogates nor the public in (...) general are typically informed of this obviously relevant information. Therefore, donors or surrogates do not provide valid consent for a lethal medical procedure. This is a serious moral failing on the part of the transplant community. To address this concern, I advocate for accurate and fully transparent communication of information to the public to allow for an informed civic dialogue about the ethics and legality of lethal organ procurement. Furthermore, I advocate that systems be put in place by the transplant community to allow for valid consent for lethal organ procurement. (shrink)

McGovern, Kevin In recent years, some speakers at Catholic conferences and a few articles on Catholic websites and in Catholic newspapers have claimed that brain death is not really death. Some Catholics may be confused by this - particularly if they are asked to agree to the removal of mechanical ventilation or the procurement of organs from a relative or friend who has been declared brain dead. At the same time, these claims might damage the reputation of the (...) Church within the scientific and health care communities. This article reviews what brain death is, and then details Catholic investigations and statements about this concept. (shrink)

Background and PurposeMany critically ill patients in intensive care units (ICUs) are unable to communicate their wishes about goals of care, particularly about the use of life-sustaining treatments. Surrogates and clinicians struggle with medical decisions because of a lack of clarity regarding patients’ preferences, leading to prolonged hospitalizations and increased costs. This project focused on the development and implementation of a tool to facilitate a better communication process by (1) assuring the early identification of a surrogate if indicated on admission (...) and (2) clarifying the decision-making standards that the surrogate was to use when participating in decision making. Before introducing the tool into the admissions routine, the staff were educated about its use and value to the decision-making process.Project and MethodsThe study was to determine if early use of a simple method of identifying a patient’s surrogate and treatment preferences might impact length of stay (LOS) and total hospital charges. A pre- and post-intervention study design was used. Nurses completed the surrogacy information tool for all patients upon admission to the neuroscience ICU. Subjects (total N=203) were critically ill patients who had been on a mechanical ventilator for 96 hours or longer, or in the ICU for seven days or longer. The project included staff education on biomedical ethics, critical communication skills, early identification of families and staff in crisis, and use of a simple tool to document patients’ surrogates and previously expressed care wishes. Data on hospital LOS and hospital charges were collected through a retrospective review of medical records for similar four-month time frames pre- and post-implementation of the assessment tool.ResultsSignificant differences were found between pre- and post-groups in terms of hospital LOS (F=6.39, p=.01) and total hospital charges (F=7.03, p=.009).ConclusionsProject findings indicate that the use of a simple admission assessment tool, supported by staff education about its completion, use, and available resources, can decrease LOS and lower total hospital charges. The reasons for the difference between the pre- and post-intervention groups remain unclear. Further research is needed to evaluate if the quality of communications between patients, their legally authorized representatives, and clinicians—as suggested in the literature—may have played a role in decreasing LOS and total hospital charges. (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)

Background: Relatively little is known about neonatologists' roles in helping families navigate the difficult decision to attempt or withhold resuscitation for a neonate delivering at the threshold...

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

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)

We describe two unusual cases of cardiopulmonary death in mechanically ventilated patients in the neurological intensive care unit. After cardiac arrest, both patients were pulseless for a protracted period. Upon extubation, both developed agonal movements (gasping respiration) resembling life. We discuss these cases and the literature on the ethical and medical controversies associated with determining time of cardiopulmonary death. We conclude that there is rarely a single moment when all of a patient’s physiological functions stop working at once. This can (...) pose a challenge for determining the exact moment of death. (shrink)

Organ donation after brain death has been practiced in China since 2003 in the absence of brain death legislation. Similar to international standards, China’s brain death diagnostic criteria include coma, absence of brainstem reflexes, and the lack of spontaneous respiration. The Chinese criteria require that the lack of spontaneous respiration must be verified with an apnea test by disconnecting the ventilator for 8 min to provoke spontaneous respiration. However, we have found publications in Chinese medical journals, in which the donors (...) were declared to be brain dead, yet without an apnea test. The organ procurement procedures started with initiating “intratracheal intubation for mechanical ventilation after brain death,” indicating that a brain death diagnosis was not performed. The purpose of the intubation was not to resuscitate the patient but rather was directly related to facilitating the explantation of organs. Moreover, it was unmistakably stated in two of these publications that the cardiac arrest was induced in these patients without brain death determination by cold St. Thomas cardioplegic solution or other cold myocardial protection solutions. This means that the condition of these donors neither met the criteria of brain death nor that of cardiac death. In other words, the “donor organs” may well have been procured in these cases from living human beings. Thus, brain death definition is abused in China by some individuals for organ harvesting, and a systematic investigation is needed to clarify the situation of organ donation after brain death in China. (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)

A thirty-year-old single mother with recurrent, metastatic, treatment-refractory cancer presents to the emergency room with severe difficulty breathing due to an obstructive tumor in her neck, compounded by progressive disease in her lungs and a new pulmonary embolism. She cannot be safely intubated and would require an emergent awake tracheotomy. Even if the airway can be successfully secured surgically, the likelihood that she will be able to be weaned from mechanical ventilation is very low. The surgeon, a young (...) mother too, appreciates the patient's desire for more time with her toddler. But the surgeon knows the significant risk of surgery, the massive responsibility she would accept in trying to get the patient through it, and the emotional toll of an intraoperative death on surgical staff. And she can imagine the second-guessing that will come during the inevitable morbidity and mortality conference if the patient should die in the perioperative window. Yet the surgeon does not want to take the “easy” way out; after all, critically ill patients undergo aggressive resuscitation all the time. What should she do? (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)