PurposeScarce evidence exists regarding end-of-life decision (EOLD) in neurocritically ill patients. We investigated the factors associated with EOLD making, including the group and individual characteristics of involved healthcare professionals, in a multiprofessional neurointensive care unit (NICU) setting.Materials and methodsA prospective, observational pilot study was conducted between 2013 and 2014 in a 10-bed NICU. Factors associated with EOLD in long-term neurocritically ill patients were evaluated using an anonymised survey based on a standardised questionnaire.Results8 (25%) physicians and 24 (75%) nurses participated (...) in the study by providing their ‘treatment decisions’ for 14 patients at several time points. EOLD was ‘made’ 44 (31%) times, while maintenance of life support 98 (69%) times. EOLD patterns were not significantly different between professional groups. The individual characteristics of the professionals (age, gender, religion, personal experience with death of family member and NICU experience) had no significant impact on decisions to forgo or maintain life-sustaining therapy. EOLD was patient-specific (intraclass correlation coefficient: 0.861), with the presence of acute life-threatening disease (OR (95% CI): 18.199 (1.721 to 192.405), p=0.038) and low expected patient quality of life (OR (95% CI): 9.276 (1.131 to 76.099), p=0.016) being significant and independent determinants for withholding or withdrawing life-sustaining treatment.ConclusionsOur findings suggest that EOLD in NICU relies mainly on patient prognosis and not on the characteristics of the healthcare professionals. (shrink)

The right to refuse medical intervention is well established, but it remains unclear how best to respect and exercise this right in life support. Contemporary ethical guidelines for critical care give ambiguous advice, largely because they focus on the moral equivalence of withdrawing and withholding care without confronting the very real differences regarding who is aware and informed of intervention options and how patient values are communicated and enacted. In withholding care, doctors typically withhold information about interventions judged (...) too futile to offer. They thus retain greater decision-making burden and face weaker obligations to secure consent from patients or proxies. In withdrawing care, there is a clearer imperative for the doctor to include patients in decisions, share information and secure consent, even when continued life support is deemed futile. How decisions to withhold and withdraw life support differ ethically in their implications for positive versus negative interpretations of patient autonomy, imperatives for consent, definitions of futility and the subjective evaluation of benefits and burdens of life support in critical care settings are explored. Professional reflection is required to respond to trends favouring a more positive interpretation of patient autonomy in the context of life support decisions in critical care. Both the bioethics and critical care communities should investigate the possibilities and limits of growing pressure for doctors to disclose their reasoning or seek patient consent when decisions to withhold life support are made. (shrink)

Discussions of withdrawal of life support often revolve around a patient’s perceived level of suffering or lack of experience. Personhood, however, is often linked to personal agency. In the present study, 279 laypeople estimated the amount of agency and experience in hypothetical patients differing in degree of consciousness. Participants also indicated whether they would choose to maintain or terminate life support. Patients were more likely to terminate life support for a patient in a (...) persistent vegetative state, followed by one with amyotrophic lateral sclerosis and in a minimally conscious state. The decision to maintain life support was reliably predicted by perceptions of a patient’s agency but life support decisions were not significantly predicted by ratings of experience. In sum, decisions regarding maintaining life support are more influenced by perceptions of a patient’s ability to plan and act than by perceptions of a patient’s ability to feel or experience. (shrink)

The author argues that there is no morally relevant distinction between letting and making death happen, and between withholding and withdrawing life-support. There is a discussion of possible adverse consequences in believing that there are moral distinctions. And then he shows that acknowledging the absence of such a distinction does not necessarily imply any endorsement of active euthanasia.

Ethical analyses, professional guidelines and legal decisions support the equivalence thesis for life-sustaining treatment: if it is ethical to withhold treatment, it would be ethical to withdraw the same treatment. In this paper we explore reasons why the majority of medical professionals disagree with the conclusions of ethical analysis. Resource allocation is considered by clinicians to be a legitimate reason to withhold but not to withdraw intensive care treatment. We analyse five arguments in favour of non-equivalence, and find (...) only relatively weak reasons to restrict rationing to withholding treatment. On the contrary, resource allocation provides a strong argument in favour of equivalence: non-equivalence causes preventable death in critically ill patients. We outline two proposals for increasing equivalence in practice: (1) reduction of the mortality threshold for treatment withdrawal, (2) time-limited trials of intensive care. These strategies would help to move practice towards more rational treatment limitation decisions. (shrink)

The advent of COVID-19 has been the occasion for a renewed interest in the principles governing triage when the number of critically ill patients exceeds the healthcare infrastructure’s capacity in a given location. Some scholars advocate that it would be morally acceptable in a crisis to withdraw resources like life support and ICU beds from one patient in favor of another, if, in the judgment of medical personnel, the other patient has a significantly better prognosis. The paper examines (...) the arguments for and against this approach from the point of view of natural law theory, especially using the principle of double effect. We conclude that it is inadmissible to withdraw life-saving medical interventions from patients who are still benefiting from them, on the sole grounds that other patients might benefit more. Those who are currently using such technology should only interrupt their treatment if, in the judgment of medical personnel and, if possible, taking into account the wishes and needs of the patient and his family, the treatment is deemed futile, burdensome, or disproportionate. (shrink)

One way to help ensure the future of human life on the planet is to reduce the total number of people alive, as a hedge against dangers to the environment. One commentator has proposed withdrawing government and insurance subsidies from all fertile people, to help reduce the number of births. Any proposal of this kind does not, however, offer a solution commensurate with current problems of resource use and carbon emissions. Closing off fertility medicine to some people – or (...) even to all – would have only negligible effects in environmental protection. Moreover, the proposal to withdraw financial subsidies from fertile people would have prejudicial effects on lesbian and gay people, who must always reach beyond their same-sex relationships for help in having children. It is, moreover, entirely unclear why some people turning to fertility medicine for help in having children should have to pay their own way even though they contribute to the pool of money available for government and insurance subsidies. Entitlements based on an alleged moral difference between the ‘fertile’ and the ‘infertile’ cannot support such a conclusion. (shrink)

BackgroundThere has been no in-depth research of public attitudes on withholding or withdrawing life-prolonging treatment, euthanasia, assisted suicide and physician assisted suicide in Croatia. The aim of this study was to examine these attitudes and their correlation with sociodemographic characteristics, religion, political orientation, tolerance of personal choice, trust in physicians, health status, experiences with death and caring for the seriously ill, and attitudes towards death and dying. MethodsA cross-sectional study was conducted on a three-stage random sample of adult citizens (...) of the Republic of Croatia, stratified by regions, counties, and locations within those counties. In addition to descriptive statistics, ANOVA and Chi-square tests were used to determine differences, and factor analysis, correlation analysis and multiple regression analysis for data analysis.Results38.1% of the respondents agree with granting the wishes of dying people experiencing extreme and unbearable suffering, and withholding life-prolonging treatment, and 37.8% agree with respecting the wishes of such people, and withdrawing life-prolonging treatment. 77% of respondents think that withholding and withdrawing procedures should be regulated by law because of the fear of abuse. Opinions about the practice and regulation of euthanasia are divided. Those who are younger and middle-aged, with higher levels of education, living in big cities, and who have a more liberal worldview are more open to euthanasia. Assisted suicide is not considered to be an acceptable practice, with only 18.6% of respondents agreeing with it. However, 40.1% think that physician assisted suicide should be legalised. 51.6% would support the dying person’s autonomous decisions regarding end-of-life procedures.ConclusionsThe study found low levels of acceptance of withholding or withdrawing life-prolonging treatment, euthanasia, assisted suicide and physician assisted suicide in Croatia. In addition, it found evidence that age, level of education, political orientation, and place of residence have an impact on people’s views on euthanasia. There is a need for further research into attitudes on different end-of-life practices in Croatia. (shrink)

RD, a 32-year-old male, was admitted to the hospital with hypoxic COVID pneumonia–a potentially life-threatening condition characterized by dangerously low levels of oxygen in the body- during one of the pandemic’s surges. While RD’s age gave the clinical team hope for his prognosis, his ability to recover was complicated by his being unvaccinated and having multiple comorbidities, including diabetes and obesity. His condition worsened to the point that he required extracorporeal membrane oxygenation (ECMO), a machine that maintains the functioning (...) of a person’s heart and lungs. -/- Given its scarcity–only 264 of the over 6,000 hospitals in the United States offer ECMO, according to the Extracorporeal Life Support Organization–as well as its high cost and the inadequate supply of staff required to maintain it, ECMO primarily serves as a bridge to support critically ill patients until they can receive an organ transplant or implanted medical device. For RD, ECMO was started to support him until he could be evaluated for, and possibly receive, a bilateral lung transplant. Despite its intended use as a treatment of last resort, some patients can remain on ECMO for weeks or months. And some are awake, alert, and capable of medical decision-making. -/- RD was one such patient. However, the transplant evaluation committee ruled out RD’s candidacy for bilateral lung transplantation, based on his poor potential for recovery and a lack of family and friends to provide post-transplant support. This determination raised the prospect of continued ECMO treatment being a bridge to nowhere. But RD was comfortable on ECMO and wanted to remain in the ICU. The ICU intensivist contacted the ethics consult service with questions about whether continued ECMO support was medically and ethically inappropriate. (shrink)

Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive therapies considered futile and burdensome by a wide range of medical and lay people can cause considerable problems and be very difficult to resolve. While it is vital to support families in such difficult times, we are increasingly concerned that deeply (...) held belief in religion can lead to children being potentially subjected to burdensome care in expectation of ‘miraculous’ intervention. We reviewed cases involving end-of-life decisions over a 3-year period. In 186 of 203 cases in which withdrawal or limitation of invasive therapy was recommended, agreement was achieved. However, in the 17 remaining cases extended discussions with medical teams and local support mechanisms did not lead to resolution. Of these cases, 11 (65%) involved explicit religious claims that intensive care should not be stopped due to expectation of divine intervention and complete cure together with conviction that overly pessimistic medical predictions were wrong. The distribution of the religions included Protestant, Muslim, Jewish and Roman Catholic groups. Five of the 11 cases were resolved after meeting religious community leaders; one child had intensive care withdrawn following a High Court order, and in the remaining five, all Christian, no resolution was possible due to expressed expectations that a ‘miracle’ would happen. (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)

The Zhuangzi, a 4th century BCE Daoist text, is sceptical about the political culture of its time. Those who debated conceptions of a good life were hostile to the views of others. They were intolerant and at times contemptuous of others who did not embody their values. In contrast to such negativity, the Zhuangzi promotes equanimity. The equanimity of the sagely person is grounded in a balance she maintains between engagement and withdrawal. Engaging critically, she problematises the lack (...) of diversity in their options for a good life. By withdrawing, she refuses to be party to the squabbles that perpetuate intolerance. The paper aims to show how equanimity is possible, thereby articulating a new angle on emotions in the Zhuangzi. (shrink)

If a doctor is trying to decide whether or not to provide a medical treatment, does it matter ethically whether that treatment has already been started? Health professionals sometimes find it harder to stop a treatment (withdraw) than to refrain from starting the treatment (withhold). But does that feeling correspond to an ethical difference? In this article, we defend equivalence—the view that withholding and withdrawal of treatment are ethically equivalent when all other factors are equal. We argue that preference (...) for withholding over withdrawal could represent a form of cognitive bias—withdrawal aversion. Nevertheless, we consider whether there could be circumstances in which there is a moral difference. We identify four examples of conditional nonequivalence. Finally, we reflect on the moral significance of diverging intuitions and the implications for policy. We propose a set of practical strategies for helping to reduce bias in end-of-life decision making, including the equivalence test. (shrink)

Withholding and withdrawing treatment are widely regarded as ethically equivalent in medical guidelines and ethics literature. Health care personnel, however, widely perceive moral differences between withholding and withdrawing. The proponents of equivalence argue that any perceived difference can be explained in terms of cognitive biases and flawed reasoning. Thus, policymakers should clear away any resistance to accept the equivalence stance by moral education. To embark on such a campaign of changing attitudes, we need to be convinced that the ethical analysis (...) is correct. Is it? In this article, I take a closer look at the moral relation between withholding and withdrawing. My conclusion is that withholding and withdrawing are not in general ethically equivalent. Thus, medical guidelines should be rewritten, and rather than being “educated” away from their sound judgments, medical professionals and patients should have nuanced medico-ethical discussions regarding withholding and withdrawing treatment. (shrink)

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

In 2011 the English Court of Protection ruled that it would be unlawful to withdraw artificial nutrition and hydration from a woman, M, who had been in a minimally conscious state for 8 years. It was reported as the first English legal case concerning withdrawal of artificial nutrition and hydration from a patient in a minimally conscious state who was otherwise stable. In the absence of a valid and applicable advance decision refusing treatment, of other life-limiting pathology or (...) excessively burdensome suffering, the judgement makes it clear that the obligation on health professionals falls strongly in favour of preserving life. Although the Court sought to limit the judgement as closely as possible to the facts of the case, it is likely to have a significant impact on life-sustaining treatment decisions for people in states of low awareness. This paper outlines the main legal features of the judgement. (shrink)

BackgroundWhen rationing health care, a commonly held view among ethicists is that there is no ethical difference between withdrawing or withholding medical treatments. In reality, this view does not generally seem to be supported by practicians nor in legislation practices, by for example adding a ‘grandfather clause’ when rejecting a new treatment for lacking cost-effectiveness. Due to this discrepancy, our objective was to explore physicians’ and patient organization representatives’ experiences- and perceptions of withdrawing and withholding treatments in rationing situations of (...) relative scarcity.MethodsFourteen semi-structured interviews were conducted in Sweden with physicians and patient organization representatives, thematic analysis was used.ResultsParticipants commonly express internally inconsistent views regarding if withdrawing or withholding medical treatments should be deemed as ethically equivalent. Participants express that in terms of patients’ need for treatment withholding and withdrawing should be deemed ethically equivalent. However, in terms of prognostic differences, and the patient-physician relation and communication, there is a clear discrepancy which carry a moral significance and ultimately makes withdrawing psychologically difficult for both physicians and patients, and politically difficult for policy makers.ConclusionsWe conclude that the distinction between withdrawing and withholding treatment as unified concepts is a simplification of a more complex situation, where different factors related differently to these two concepts. Following this, possible policy solutions are discussed for how to resolve this experienced moral difference by practitioners and ease withdrawing treatments due to health care rationing. Such solutions could be to have agreements between the physician and patient about potential future treatment withdrawals, to evaluate the treatment’s effect, and to provide guidelines on a national level. (shrink)

This paper examines the recent prominent view in medical ethics that withdrawing life-sustaining treatment is an act of killing. I trace this view to the rejection of the traditional claim that withdrawing LST is an omission rather than an act. Although that traditional claim is not as problematic as this recent prominent view suggests, my main claim is that even if we accepted that withdrawing LST should be classified as an act rather than as an omission, it could still (...) be classified as letting die rather than killing. Even though omissions are contrasted with acts, letting die need not be, for one can let die by means of acts. The remainder of the paper is devoted to establishing this claim and addresses certain objections to it. (shrink)

The right to withdraw from research without penalty is well established around the world. However, it has been challenged in some corners of bioethics based on concerns about various harms—to participants, to scientific integrity, and to research bystanders—that may stem from withdrawal. These concerns have become particularly salient in emerging debates about the ethics of controlled human infection (CHI) studies in which participants are intentionally infected with pathogens, often in inpatient settings with extensive follow‐up. In this article, I provide (...) support for preserving the right to withdraw from research without penalty and demonstrate that it is also typically justified in the specific context of CHI studies. The right is well aligned with individual freedoms outside the research setting, where autonomous individuals are permitted to engage in behaviors that will foreseeably cause them harm; where they cannot be compelled to satisfy contracts for their services, nor penalized for failure to do so; and where their behavior is not constrained by public health authorities except in extreme circumstances. These freedoms are supported by U.S. law, as well as by ethical analysis that is more globally relevant. The problems associated with the right to withdraw, however, remain. The best approach to addressing them is not to restrict the right but rather to avoid initiating research when withdrawal would be especially problematic. If research proceeds, steps can still be taken to minimize participant withdrawal without infringing the right. Investigators can avoid participant surprise through informed consent focused on a study’s most burdensome aspects and promote study completion through financial incentives. Should participants nonetheless seek to withdraw, investigators may attempt to persuade them not to do so by encouraging consideration of the range of potential harms that may result. Researchers conducting CHI studies and other research from which withdrawal might be especially problematic should prepare for the possibility of participant withdrawal, respect participant requests to withdraw without penalty, and incorporate various measures to avoid such requests. (shrink)

ObjectiveA form of pathological social withdrawal which is also called hikikomori has been proved its existence in China. But the prevalence and characteristics of hikikomori in China remain unknown. Past studies had investigated the hikikomori phenomenon in three cities of China. The purpose of this study is to discover the prevalence of hikikomori in a convenient online sample in China as well as the difference in demographic characteristics and other possible traits between hikikomori sufferers and the general population.MethodsA total (...) of 1,066 youths in China completed the online questionnaire, which consisted of questions about demographics, the 25-item Hikikomori Questionnaire, the Internet Addiction Test, the Loneliness Scale, and the General Health Questionnaire. SPSS is used to evaluate the data.ResultsOf the 1,066 youths, 980 were identified as belonging to group A, 46 to group B, and 40 to group C. The hikikomori group accounted for 8.1%. The present data suggest that residence and loneliness are related to the occurrence of hikikomori. HQ-25 score of the hikikomori group was significantly higher than the comparison group. The UCLA score showed that those in the hikikomori group felt lonelier than those in the comparison. The regression model predicted hikikomori risk, the Hosmer-Lemeshow test value is 7.114 and P = 0.524 > 0.05.ConclusionThe grouping criterion in our present study is reasonable and such a grouping criterion can screen out potential populations of hikikomori. When people develop into hikikomori sufferers in the present, their social withdrawal behaviors and feeling of loneliness are both much more severe than in the past. The possible relationships between hikikomori and loneliness reflect the need to give the youths more social support, to help them connect with society. (shrink)

Care workers frequently withdraw from elderly people in their care; this has resulted in a number of scandals in the media. Here I analyze an empirical scene observed at an old people’s home in Denmark, which contains behavioral patterns among the care workers which could be seen as withdrawal. At the same time it illustrates the care workers' commitment to the elderly. A paradoxical "empathy at a distance" is characteristic of the scene. When analyzing my written observations in an (...) interpretation group, my use of language was a point of discussion. What did it mean when I described the interactions between care workers and elderly residents in words commonly used to describe mother-child interactions? My use of language became a "hermeneutical key" which enabled a psychoanalytically inspired interpretation. This focuses on the care relationship as activating our earliest memories of our own care relations, independently of whether we are in the role of care providers or care receivers. Through collusion theory, the interpretation accepts both the anxiety which the helpless elderly people arouse in the care workers and their motivation for care work as two sides of a subjectively important theme. The article illustrates how working consciously with the researcher's subjectivity makes it possible to understand apparently irrational patterns. The insights thus gained may be used to prevent withdrawals in care work as an argument for care workers’ need for emotional supervision. (shrink)

Philosophical discussion about citizenship has traditionally focused on the questions of what citizenship is, its relationship to civic virtue and political participation, and whether or not it can be meaningfully exercised at the supra-national level. In recent years, however, philosophers have turned their attention to the legal status attached to citizenship, and have questioned existing principles of citizenship allocation and withdrawal. With regard to the question of who is morally entitled to citizenship, philosophers have argued for principles of citizenship (...) allocation that go beyond birth and lineage, and have focused instead on the value of political attachment and located life plans. These principles have several advantages over existing legal principles, but they suffer from being under-specified, as well as being over and under-inclusive. With regard to loss of citizenship, philosophers have primarily denounced citizenship withdrawal as a form of punishment by appealing to principles of fair and equal treatment. However, theories purporting to show that denationalization is always wrong have trouble explaining why loss of citizenship is so problematic for persons who have committed the most horrendous crimes against their fellow citizens, and who, in so doing, have in effect self-excluded from the political community. (shrink)

Many medical ethicists accept the thesis that there is no moral difference between withholding and withdrawing life-sustaining therapy. In this paper, we offer an interesting counterexample which shows that this thesis is not always true. Withholding is distinguished from withdrawing by the simple fact that therapy must have already been initiated in order to speak coherently about withdrawal. Provided that there is a genuine need and that therapy is biomedically effective, the historical fact that therapy has been initiated (...) entails a claim to continue therapy that cannot be attributed to patients who have not yet received therapy. This intrinsic difference between withholding and withdrawing therapy is of moral importance. In many instances, patients will waive this claim. But when one considers withdrawing therapy from one patient to help another in a setting of scarce resources, this intrinsic moral difference comes into sharp focus. In an era of shrinking medical resources, this difference cannot be ignored. (shrink)

Childress and colleagues (2023) review several arguments that would support the unilateral withdrawal of ECMO (extracorporeal membrane oxygenation) against the wishes of a capacitated patient (Mr....

Dilemmas about resuscitation and life-prolonging treatment for severely compromised infants have become increasingly complex as skills in neonatal care have developed. Quality of life and resource issues necessarily influence management. Our Institute of Medical Ethics working party, on whose behalf this paper is written, recognises that the ultimate responsibility for the final decision rests with the doctor in clinical charge of the infant. However, we advocate a team approach to decision-making, emphasising the important role of parents and nurses (...) in the process. Assessing the relative burdens and benefits can be troubling, but doctors and parents need to retain a measure of discretion; legislation which would determine action in all cases is inappropriate. Caution should be exercised in involving committees in decision-making and, where they exist, their remit should remain to advise rather than to decide. Support for families who bear the consequences of their decisions is often inadequate, and facilitating access to such services is part of the wider responsibilities of the intensive care team. The authors believe that allowing death by withholding or withdrawing treatment is legitimate, where those closely involved in the care of the infant together deem the burdens to be unacceptable without compensating benefits for the infant. As part of the process accurate and careful recording is essential. (shrink)

Representatives from eight European countries compared the legal, ethical and professional settings within which decision making for neonates takes place. When it comes to limiting treatment there is general agreement across all countries that overly aggressive treatment is to be discouraged. Nevertheless, strong emphasis has been placed on the need for compassionate care even where cure is not possible. Where a child will die irrespective of medical intervention, there is widespread acceptance of the practice of limiting aggressive treatment or alleviating (...) suffering even if death may be hastened as a result. Where the infant could be saved but the future outlook is bleak there is more debate, but only two countries have tested the courts with such cases. When it comes to the active intentional ending of life, the legal position is standard across Europe; it is prohibited. However, recognising those intractable situations where death may be lingering and unpleasant, Dutch paediatricians have reported that they do sometimes assist babies to die with parental consent. Two cases have been tried through the courts and recent official recommendations have set out standards by which such actions may be assessed. (shrink)

Objective Explore parents’ point of view about forgoing life sustaining treatment (LST) in terminal critically ill children and factors affecting their decisions. Method This was a qualitative study using in-depth interviews with parents whose child died between 6–12 months old in pediatric intensive care unit (PICU) of a university-affiliated teaching hospital. Interviews were audiotaped and transcribed. Data were analyzed using interpretive description method. Result A total of 7 parents of 5 children decided to withhold or withdraw LST. Five parents (...) from 4 children decided to sign the do not attempt resuscitation (DNAR), and none choose to withdrew the LST, including mechanical support. Factors influenced their decision were communication, value of children, child best interest, intuition, religious belief, and emotions. Economic factors did not influence the decision-making. Conclusion Most parents decided to sign the DNAR, none choose to withdrew mechanical support. Communication was the most important factor that influenced parents to make a forgoing LST decision. (shrink)

Why do we persist in the relentless pursuit of artificial nourishment and other treatments to maintain a permanently unconscious existence? In facing the future, if not the present world-wide reality of a huge number of persistent vegetative state (PVS) patients, will they be treated because of our ethical commitment to their humanity, or because of an ethical paralysis in the face of biotechnical progress? The PVS patient is cut off from the normal patterns of human connection and communication, with a (...) life unlike other forms of human existence. Why the struggle to justify ending a life which, it is said, has suffered an irreversible loss of the content of consciousness? Elsewhere, the authors have addressed the ethical controversies and confusion engendered by ambiguous terminology, misuse of medical facts and the differing interpretations of what constitutes 'effective' treatment: in particular, the issue of whether in fact artificial nutrition and hydration is a medical treatment, or simply part of the obligatory care owed to all patients, permanently unconscious or not. In this paper, we intend to argue that recent analyses of medical futility, its meaning and ethical implications, despite an absence of public consensus, permit some tentative re-evaluation of our ethical obligations to the PVS patient. (shrink)

Contrary to the widespread concern about over-treatment at the end of life, today, patient preferences for palliative care at the end of life are frequently respected. However, ethically challenging situations in the current healthcare climate are, instead, situations in which a competent patient requests active treatment with the goal of life-prolongation while the physician suggests best supportive care only. The argument of futility has often been used to justify unilateral decisions made by physicians to withhold or withdraw (...) life-sustaining treatment. However, we argue that neither the concept of futility nor that of patient autonomy alone is apt for resolving situations in which physicians are confronted with patients' requests for active treatment. Instead, we integrate the relevant arguments that have been put forward in the academic discussion about ‘futile’ treatment into an ethical algorithm with five guiding questions: (1) Is there a chance that medical intervention will be effective in achieving the patient's treatment goal? (2) How does the physician evaluate the expected benefit and the potential harm of the treatment? (3) Does the patient understand his or her medical situation? (4) Does the patient prefer receiving treatment after evaluating the benefit-harm ratio and the costs? (5) Does the treatment require many resources? This algorithm shall facilitate approaching patients' requests for treatments deemed futile by the physician in a systematic way, and responding to these requests in an ethically appropriate manner. It thereby adds substantive considerations to the current procedural approaches of conflict resolution in order to improve decision making among physicians, patients and families. (shrink)

Conscious but incapacitated patients need protection from both undertreatment and overtreatment, for they are exceptionally vulnerable, and dependent on others to act in their interests. In the United States, the law prioritizes autonomy over best interests in decision making. Yet U.S. courts, using both substituted judgment and best interests decision making standards, frequently prohibit the withdrawal of life-sustaining treatment from conscious but incapacitated patients, such as those in the minimally conscious state, even when ostensibly seeking to determine what (...) patients would have wanted. In the United Kingdom, under the Mental Capacity Act of 2005, courts decide on the best interests of incapacitated patients by, in part, taking into account the past wishes and values of the patient. This paper examines and compares those ethicolegal approaches to decision making on behalf of conscious but incapacitated patients. We argue for a limited interpretation of best interests such that the standard is properly used only when the preferences of a conscious, but incapacitated patient are unknown and unknowable. When patient preferences and values are known or can be reasonably inferred, using a holistic, all-things-considered substituted judgment standard respects patient autonomy. (shrink)

This paper examines the few, but important legal and coronial cases concerning withdrawing or withholding life-sustaining treatment from severely disabled or critically impaired infants in Australia. Although sparse in number, the judgements should influence common clinical practices based on assessment of “best interests” but these have not yet been adopted. In particular, although courts have discounted assessment of “quality of life” as a legitimate component of determination of “best interests,” this remains a prominent component of clinical guidelines. In (...) addition, this paper highlights the lack of uniform clinical guidelines available to medical professionals and parents in Australia when making end-of-life decisions for severely ill infants. Thus, it is argued here that there is a need for an overarching prescriptive uniform framework or set of guidelines in end-of-life decision-making for impaired infants. This would encourage greater transparency, consistency, and some degree of objectivity in an area that often appears subjective. (shrink)

Some patients who are dependent on extracorporeal membrane oxygenation (ECMO) are alert and retain capacity to participate in decision-making, including decisions regarding whether to continue life...

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)

Medical assistance in dying (MAiD) was legalized in Canada following the Carter v. Canada ruling of 2015. In spite of legalization, the ethics of MAiD remain contentious. The bioethical literature has attempted to differentiate MAiD from withdrawing life-sustaining treatment (WLT) in an effort to examine the nature of the moral difference between the two. However, this research has often neglected the firsthand experiences of the clinicians involved in these procedures. By asking physicians if they perceive the major bioethical accounts (...) as clinically useful, we seek to distinguish between aspects of the contemporary bioethical landscape which are useful at the bedside and those which are divorced from the realities faced by clinicians. We applied a qualitative descriptive approach to explore physicians’ experiences and bioethical distinctions in providing MAiD and WLT. Semi-structured interviews were conducted with 21 physicians, and the transcripts were thematically analyzed to identify common patterns and divergences in their perspectives. Three core themes were found: (1) consensus on MAiD’s moral equivalence with WLT despite differences between the practice, (2) discord regarding the use of the term ‘killing’, and (3) disjuncture between bioethical debates and practice. Theme 1 comprised of three sub-themes: (1.1) no moral difference between MAiD and WLT, (1.2) physician versus underlying medical condition as cause of death, and (1.3) relief of suffering. In order to have practical utility for clinical practice, it is essential for bioethicists to engage in dialogue with patients and their medical providers pursuing MAiD or WLT. Theoretical debates that are divorced from the realities of terminal illness do not assist physicians with navigating the ethical terrain of ending a patient’s life. This research captures meaningful accounts regarding MAiD and WLT that is rooted in the lived experience of the providers of these services in order for bioethical debates to have substantive impact in clinical practice and in legislation surrounding future health policies. (shrink)