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)

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 (...) class='Hi'>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)

The question a judge has to ask in deciding whether or not life-sustaining treatment should be withdrawn is whether the continued treatment is lawful. It will be lawful if it is in the patient’s best interests. Identifying this question gives no guidance about how to approach the assessment of best interests. It merely identifies the judge’s job. The presumption in favour of the maintenance of life is part of the job that follows the identification of the question.The presumption (...) is best regarded as a presumption of law. It has long been recognised as part of the way in which the English law discharges its obligations under Article 2 of the European Convention on Human Rights. But even if it is a ‘mere’ evidential presumption it cannot, on the facts of most cases involving applications for the withdrawal of life-sustaining treatment from patients in prolonged disorders of consciousness, be rebutted. (shrink)

In a recent paper, Charles Foster argued that the epistemic uncertainties surrounding prolonged disorders of consciousness make it impossible to prove that the withdrawal of life-sustaining treatment can be in a patient’s best interests and, therefore, the presumption in favour of the maintenance of life cannot be rebutted. In the present response, I argue that, from a legal perspective, Foster has reached the wrong conclusion because he is asking the wrong question. According to the reasoning in two leading cases (...) —Bland and James —the principle of respect for autonomy creates a persuasive presumption against treatment without consent. Therefore, it is the continuation of treatment that requires justification, rather than its withdrawal. This presumption also works as the tiebreaker determining that treatment should stop if there is no persuasive evidence that its continuation is in the best interests of the patient. The presumption in favour of the maintenance of life, on the other hand, should be understood as an evidential presumption on a factual issue that is assumed to be true if unchallenged. However, the uncertainties regarding PDOC actually give reasons for displacing this evidential presumption. Consequently, decision-makers will have to weigh up the pros and cons of treatment having the presumption against treatment without consent as the tiebreaker if the evidence is inconclusive. In conclusion, when the right question is asked, Foster’s argument can be turned on its head and uncertainties surrounding PDOC weigh in to justify the interruption of treatment in the absence of compelling contrary evidence. (shrink)

In healthcare priority settings, early access to treatment before reimbursement decisions gives rise to problems of whether negative decisions for cost‐effectiveness reasons should result in withdrawing treatment, already accessed by patients. Among professionals there seems to be a strong attitude to distinguish between withdrawing and withholding treatment, viewing the former as ethically worse. In this article the distinction between withdrawing and withholding treatment for reasons of cost effectiveness is explored by analysing the doing/allowing (...) distinction, different theories of justice, consequentialist and virtue perspectives. The authors do not find any strong reasons for an intrinsic difference, but do find some reasons for a consequentialist difference, given present attitudes. However, overall, such a difference does not, all things considered, provide a convincing reason against withdrawal, given the greater consequentialist gain of using cost‐effective treatment. As a result, patients should be properly informed when given early access to treatment, that such treatment can be later withdrawn following a negative reimbursement decision. (shrink)

Volume 19, Issue 6, June 2019, Page W5-W9.

This paper explores definitions of death from the perspectives of several world and indigenous religions, with practical application for health care providers in relation to end of life decisions and organ and tissue donation after death. It provides background material on several traditions and explains how different religions derive their conclusions for end of life decisions from the ethical guidelines they proffer.

This paper presents the results of a qualitative interview study exploring English and French physicians’ moral perspectives and attitudes towards end-of-life decisions when patients lack capacity to make decisions for themselves. The paper aims to examine the importance physicians from different contexts accord to patient preferences and to explore the role of advance directives in each context. The interviews focus on problems that emerge when deciding to withdraw/-hold life-sustaining treatment from both conscious and unconscious patients; decision-making procedures and the (...) participation of proxies/relatives; previous experience with ADs and views on their usefulness; and perspectives on ways in which the decision-making processes in question might be improved. The analysis reveals differences in the way patient preferences are taken into consideration and shows how these differences influence the reasons physicians in each country invoke to justify their reluctance to adhering to ADs. Identifying cultural differences that complicate efforts to develop the practical implementation of ADs can help to inform national policies governing ADs and to better adapt them to practice. (shrink)

Introduction: Alcohol approach bias, the tendency to automatically move toward alcohol cues, has been observed in people who drink heavily. However, surprisingly, some alcohol-dependent patients demonstrate an alcohol avoidance bias. This inconsistency could be explained by the clinical or demographic profile of the population studied, yet this has not been examined in approach bias modification trials to date. We aimed to determine the proportion of patients with an approach or avoidance bias, assess whether they differ on demographic and drinking measures, (...) and to examine the clinical correlates of approach bias.Method: These research questions were addressed using baseline data from 268 alcohol-dependent patients undergoing inpatient withdrawal treatment who then went on to participate in a trial of ABM.Results: At trial entry, 155 had an alcohol approach bias and 113 had an avoidance bias. These two groups did not differ on any demographic or relevant drinking measures. Approach bias was significantly and moderately associated with total standard drinks consumed in the past 30 days but no other indices of alcohol consumption or problem severity.Conclusion: Whilst the majority of alcohol-dependent patients showed an alcohol approach bias, those with an avoidance bias did not differ in demographic or clinical characteristics, and the strength of approach bias related only to recent consumption. Further research is needed to develop more accurate and personally tailored measures of approach bias, as these findings likely reflect the poor reliability of standard approach bias measures. (shrink)

Where a decision has been made to stop futile treatment of critically ill patients on an intensive care unit – what is termed withdrawal of treatment in the UK – yet no doctor is available to perform the actions of withdrawal, nurses may be called upon to perform key tasks. In this paper I present two moral justifications for this activity by offering answers to two major questions. One is to ask if it can be in patients' best (...) interests for nurses to be the key actors in withdrawal of life‐sustaining treatment. The other is to ask if there is any reason that the nursing profession should not undertake such tasks if this is so. Both these questions require the resolution of weighty moral and philosophical issues. Thus, while offering a serious attempt to provide moral justifications for nurses undertaking withdrawal, this paper also invites debate over both the aim of task division between nurses and doctors, and how we might decide what is in the best interests of patients. (shrink)

In the United Kingdom women have access to termination of pregnancy for maternal reasons until 24 weeks’ completed gestation, but it is accepted practice for children born at or beyond 25 weeks’ gestation to be treated according to the child’s perceived best interests even if this is not in accordance with parental wishes. The authors present a case drawn from clinical practice which highlights the discomfort that parents may feel about such an abrupt change in their rights over their child, (...) and argue that parents should have greater autonomy over treatment decisions regarding their prematurely born children. (shrink)

BackgroundIn the ruling inY[2018], the UK Supreme Court has confirmed that there is no general requirement for the courts in England and Wales to authorise the withdrawal of clinically assisted nutrition and hydration from patients with prolonged disorders of consciousness. The perceived requirement, which originated in a court ruling in 1993, encompassed those in the vegetative state and those in the minimally conscious state. The ruling inYconfirms that the court may still be approached to decide difficult or contested cases, but (...) there is otherwise no routine requirement that the judges be approached.Main bodyThere is much to welcome in this ruling, particularly as it means that these decisions for these patients are no longer (unusually) singled out for a judicial decision, with all the financial and emotional costs that court proceedings can entail. However, there is also a risk that the ruling might have unwelcome consequences. First, there is the possibility that patients might die too soon, particularly if doctors should now adopt the courts’ previous reasoning, which has suggested that patients in the vegetative state lack interests, so treatment may – perhaps must – be withdrawn. Secondly, there is the converse possibility that patients might live too long, since empirical research suggests that – whether intentionally or not – patients’ families, clinicians, and the health system appear to promote treatment-by-default.ConclusionRather than adopt general positions, which may be contestable and potentially risky, this article argues, on a pluralistic basis, that the individual patient should be the focus of any decision made in his or her ‘best interests’. The existing legal framework in England and Wales, which is provided by the Mental Capacity Act 2005, already points in this direction, although more efforts may be needed to ensure that those involved in making these decisions are suitably educated and supported. Fortunately, new guidance from the British Medical Association could help clinicians and families to make decisions in the future, which are appropriate for the incapacitated individual patient in question. (shrink)

Objective: To evaluate feasibility of the guidelines of the Groupe Francophone de Réanimation et Urgence Pédiatriques for limitation of treatments in the paediatric intensive care unit .Design: A 2-year prospective survey.Setting: A 12-bed PICU at the Hôpital Jeanne de Flandre, Lille, France.Patients: Were included when limitation of treatments was expected.Results: Of 967 children admitted, 55 were included with a 2-day median delay. They were younger than others , had a higher paediatric risk of mortality score , and a higher paediatric (...) overall performance category score at admission ; all p<0.002. 34 children died. A limitation decision was made without meeting for 7 children who died: 6 received do-not-resuscitate orders and 1 received withholding decision. Decision-making meetings were organised for 31 children, and the following decisions were made: 12 DNROs , 4 withholding , with 14 withdrawing and 1 continuing treatment . After limitation, 21 children died and 10 survived . 13 procedures were interrupted because of death and 11 because of clinical improvement . Parents’ opinions were obtained after 4 family conferences , 3 days after inclusion. The first meeting was planned for 6 days after inclusion and held on the 7th day after inclusion; 80% of parents were immediately informed of the decision, which was implemented after half a day.Conclusions: GFRUPs procedure was applicable in most cases. The main difficulties were anticipating the correct date for the meeting and involving nurses in the procedure. Children for whom the procedure was interrupted because of clinical improvement and who survived in poor condition without a formal decision pointed out the need for medical criteria for questioning, which should systematically lead to a formal decision-making process. (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)

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)

This article, prompted by an extended essay published in the Journal of Medical Ethics by Charles Foster, and the current controversy surrounding the case of Vincent Lambert, analyses the legal and ethical arguments in relation to the withdrawal of life-sustaining treatment from patients with prolonged disorders of consciousness. The article analyses the legal framework through the prism of domestic law, case-law of the European Court of Human Rights and the Convention on the Rights of Persons with Disabilities, and examines (...) the challenge to the ethical consensus made by Foster. It concludes that the right approach remains a version of the approach that has prevailed for the last 25 years since the decision in Airedale NHS Trust v Bland[1993] AC 789, refined to reflect that that there is now, and rightly, a much more limited place for judgments made about the ‘burden’ of treatment or the quality of life enjoyed by the person made on the basis of assumptions about that person as a category as opposed to investigation of that person as an individual human being. (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 article explores the taxing legal questions that are raised in the context of withdrawing life sustaining treatment from patients who are in a minimally conscious state. The Court of Protection, for the first time in England, was recently asked to rule on this issue. This paper analyses the legal and ethical implications of this decision moving forward.

Many countries have adopted new triage recommendations for use in the event that intensive care beds become scarce during the COVID‐19 pandemic. In addition to establishing the exact criteria regarding whether treatment for a newly arriving patient shows a sufficient likelihood of success, it is also necessary to ask whether patients already undergoing treatment whose prospects are low should be moved into palliative care if new patients with better prospects arrive. This question has led to divergent ethical guidelines. (...) This paper explores the distinction between withholding and withdrawing medical treatment during times of scarcity. As a first central point, the paper argues that a revival of the ethical distinction between doing and allowing would have a revisionary impact on cases of voluntary treatment withdrawal. A second systematic focus lies in the concern that withdrawal due to scarcity might be considered a physical transgression and therefore more problematic than not treating someone in the first place. In light of the persistent disagreement, especially concerning the second issue, the paper concludes with two pragmatic proposals for how to handle the ethical uncertainty: (1) triage protocols should explicitly require that intensive care attempts are designed as time‐limited trials based on specified treatment goals, and this intent should be documented very clearly at the beginning of each treatment; and (2) lower survival prospects can be accepted for treatments that have already begun, compared with the respective triage rules for the initial access of patients to intensive care. (shrink)

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

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)

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)

Recent studies using functional magnetic resonance imaging of patients in a vegetative state have raised the possibility that such patients retain some degree of consciousness. In this paper, the ethical implications of such findings are outlined, in particular in relation to decisions about withdrawing life-sustaining treatment. It is sometimes assumed that if there is evidence of consciousness, treatment should not be withdrawn. But, paradoxically, the discovery of consciousness in very severely brain-damaged patients may provide more reason to (...) let them die. Although functional neuroimaging is likely to play an increasing role in the assessment of patients in a vegetative state, caution is needed in the interpretation of neuroimaging findings. (shrink)

In Japan, terminating life-sustaining treatment in non-terminal patients is legally and ethically problematic given the lack of legal regulations regarding the termination of LST, including dialysis treatment. This article describes an ethically problematic case that happened at a hospital in Tokyo in March 2019, in which a patient died after a physician withdrew kidney dialysis upon the patient’s request. Most national newspapers in Japan reported the case extensively and raised the question of ethical and legal permissibility of (...) class='Hi'>withdrawing dialysis treatment from non-terminal patients. In this article, we first examine the case within the current policy framework in Japan and then discuss how Japan can improve its end-of-life practice, focusing specifically on the patient’s right to self-determination and treatment refusal. We recommend that policymakers consider legalizing the termination of LST and the patient’s right to refuse treatment based on the principle of respect for autonomy. (shrink)

Background:Withdrawal of treatment is a common practice in intensive care units when treatment is considered futile. Compassion is an important aspect of care; however, it has not been explored much within the context of treatment withdrawal in intensive care units.Objectives:The aim was to examine how concepts of compassion are framed, utilised and communicated by intensive care nurses in the context of treatment withdrawal.Design:The study employed a qualitative approach conducting secondary analysis of an original data set. In (...) the primary study, 13 nurses were recruited from three intensive care units within a large hospital in United Kingdom. Deductive framework analysis was used to analyse the data in relation to compassionate care.Ethical considerations:The primary study was approved by the local Research Ethics Committee and the hospital’s Research and Development services.Findings:Compassionate care was mostly directed to the patient’s family and was demonstrated through care and emotional support to the family. It was predominantly expressed through attempts to maintain the patient’s dignity by controlling symptoms, maintaining patient cleanliness and removing technical apparatus.Conclusion:This study’s findings provide insight about compassionate care during treatment withdrawal which could help to understand and develop further clinicians’ roles. Prioritising the family over the patient raised concerns among nurses, who motivated by compassion, may feel justified in taking measures that are in the interests of the family rather than the patient. Further work is needed to explore the ethics of this. (shrink)

Background Little is known about the attitudes and practices of intensivists working in Lebanon regarding withholding and withdrawing life-sustaining treatments. The objectives of the study were to assess the points of view and practices of intensivists in Lebanon along with the opinions of medical, legal and religious leaders regarding withholding withdrawal of life-sustaining treatments in Lebanese intensive care units. Methods A web-based survey was conducted among intensivists working in Lebanese adult ICUs. Interviews were also done with Lebanese medical, legal (...) and religious leaders. Results Of the 229 survey recipients, 83 intensivists completed it, i.e. a response rate of. Most respondents were between 30 and 49 years old, Catholic Christians, anesthesiologists, working in Beirut. Ninety-two percent of them were familiar with the withholding and withdrawal concepts and 80% applied them. Poor prognosis of the acute and chronic disease and futile therapy were the main reasons to consider withholding and withdrawal of treatments. Ninety-five percent of intensivists agreed with the “Principle of Double Effect”. The main withheld therapies were vasopressors, respiratory assistance and CPR. Most of the respondents reported the decision was often to always multidisciplinary, involving the family, and the patient, or his advance directives or his surrogate and the nurses. The interviewees agreed there was a law governing withholding and withdrawal decisions/practices in Lebanon. Christians and Muslim Sunni leaders declared accepting those practices. Conclusion Withholding and withdrawal of LSTs in the ICU are known concepts among intensivists working in Lebanon and are being practiced. Our results could be used to inform and optimize therapeutic limitation in ICUs in the country. (shrink)

The international media recently reported the case of Eluana Englaro, a 38-year-old woman in a permanent vegetative state who died in February 2009 following withdrawal of her feeding tube. At the time of her death, she had been unconscious for 17 years. For many years, her father had been seeking permission to allow her to die. His request was rejected by the courts several times on different grounds, until the Italian Supreme Court finally granted it. The case caused considerable political (...) turmoil. The government, the president, the Constitutional Court, and the European Court of Human Rights got involved. This paper gives an account of the history of the case, enriched by personal communications with the people directly involved and a memoir by the father of Eluana. (shrink)

Background: This study attempts to understand if medical providers beliefs about the moral permissibility of honoring patient-directed refusals of life-sustaining treatment (LST) are tied to their beliefs about the patient’s decision-making capacity. The study aims to answer: 1) does concern about a patient’s treatment decision-making capacity relate to beliefs about whether it is morally acceptable to honor a refusal of LST, 2) are there differences between provider types in assessments of decision-making capacity and the moral permissibility to refuse (...) LST, and 3) do provider demographics impact beliefs about decision-making capacity and the moral permissibility to refuse LST. Methods: A mixed-methods survey using Likert assessment and vignette-based questions was administered to medical providers within a single health system in the upper Midwest (N = 714) to assess their perspectives on the moral acceptance and decision-making capacity in cases of withholding and withdrawing treatment and suicide. Results: Behavioral health providers report accepting of the moral permissibility of suicide (91.2%) more than either medical providers (77.2%) or surgeons (74.4%) (n = 283). Decision-making capacity was questioned more in the vignettes of the patients refusing life-saving surgery (36%) and voluntarily starvation (40.8%) than in the vignette of the patient requesting to deactivate a pacemaker (13%) (n = 283). Behavioral health providers were more concerned about the capacity to refuse life-saving surgery (55.9%) than medical providers (33.8%) or surgeons (23.1%) (n = 283). Conclusions: Respondents endorse the moral permissibility of persons to withhold or withdraw from treatment regardless of motive. Clinical concerns about a patient’s treatment decision-making capacity do not strongly correlate to views about the moral permissibility of honoring refusals of LST. Different provider types appear to have different thresholds for when to question treatment decision-making capacity. Behavioral health providers tend to question treatment decision-making capacity to refuse LST more than non-behavioral health providers. (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)

BackgroundEnd-of-life decisions remain a hotly debated issue in many European countries and the acceptance in the general population can act as an important anchor point in these discussions. Previous studies on determinants of the acceptance of end-of-life interventions in the general population have not systematically assessed whether determinants differ between withdrawal of life-prolonging treatment and euthanasia.MethodsA large, representative survey of the Austrian adult population conducted in 2014 included items on WLPT and EUT. We constructed the following categorical outcome: rejection (...) of both WLPT and EUT, approval of WLPT but rejection of EUT, and approval of both WLPT and EUT. The influence of socio-demographics, personal experiences, and religious and socio-cultural orientations on the three levels of approval were assessed via multinomial logistic regression analysis.ResultsHigher education and stronger socio-cultural liberal orientations increased the likelihood of approving both WLPT and EUT; personal experience with end-of-life care increased only the likelihood of approval of WLPT; and religiosity decreased approval of EUT only.ConclusionThis study found evidence for both shared and different determinants for the acceptance of WLPT and EUT. (shrink)

BackgroundWhether patients in the vegetative state (VS), minimally conscious state (MCS) or the clinically related locked-in syndrome (LIS) should be kept alive is a matter of intense controversy. This study aimed to examine the moral attitudes of lay people to these questions, and the values and other factors that underlie these attitudes.MethodOne hundred ninety-nine US residents completed a survey using the online platform Mechanical Turk, comprising demographic questions, agreement with treatment withdrawal from each of the conditions, agreement with a (...) series of ethical principles and three personality tests.ResultsMore supported treatment withdrawal from VS (40.2 % agreed, 17.6 % disagreed) than MCS (20.6 %, 41.2 %) or LIS (25.3 %, 35.8 %). Agreement with treatment withdrawal was negatively correlated with religiosity (r = −0.272, P < 0.001), though showed no significant relationship with need for cognition or empathy, and only a partial association with utilitarian judgment in a standard moral dilemma. Support for treatment withdrawal was most strongly associated with endorsement of the importance of patient autonomy, dignity, suffering, best interests. Distributive justice was not given significant weight by most. Importantly, agreement with treatment withdrawal was noticeably higher when considered from a first as opposed to third person perspective for VS (Z = −6.056, P < 0.001), MCS (Z = −6.746, P < 0.001) and LIS (Z = −6.681, P < 0.001).ConclusionLay attitudes to withdrawal of treatment in brain damaged patients are largely shaped by values similar to those central to the secular ethical debate. Neither traditional values such as the sanctity of life nor utilitarian values relating to resource allocation seem to play a central role. Far greater weight is given to autonomy, which may explain why participants were far more willing to endorse withdrawal of treatment when the issue was presented in the first person, or in relation to a concrete case involving a patient’s explicit wishes. Surveys focusing on abstract cases presented in the third person may not provide an accurate picture of lay attitudes to these critical ethical questions. (shrink)

It is commonly said that patients have no right to demand that treatment must be continued when medical carers believe it is “futile” to continue it. There are certainly many judicial statements to this effect, some of which are quoted in this paper. However, there are various ways that courts can intervene, even if they do not order directly that treatment must be provided or continued. First, patients or their representatives may argue the process of decision making was (...) unfair or that they were unfairly discriminated against when treatment has been refused. To date, these arguments have met with limited success so far as enabling patients to have treatment provided or continued against medical advice. More recently, however, some patients have challenged the lawfulness of a proposed treatment regime by advancing human rights arguments, based in turn on a broader aspect of patients’ “best interests” than best medical interests. (shrink)

It is commonly said that patients have no right to demand that treatment must be continued when medical carers believe it is “futile” to continue it. There are certainly many judicial statements to this effect, some of which are quoted in this paper. However, there are various ways that courts can intervene, even if they do not order directly that treatment must be provided or continued. First, patients or their representatives may argue the process of decision making was (...) unfair or that they were unfairly discriminated against when treatment has been refused. To date, these arguments have met with limited success so far as enabling patients to have treatment provided or continued against medical advice. More recently, however, some patients have challenged the lawfulness of a proposed treatment regime by advancing human rights arguments, based in turn on a broader aspect of patients’ “best interests” than best medical interests. (shrink)

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

With few exceptions, the literature on withdrawing and withholding life-saving treatment considers the bare fact of withdrawing or withholding to lack any ethical significance. If anything, the professional guidelines on this matter are even more uniform. However, while no small degree of progress has been made toward persuading healthcare professionals to withhold treatments that are unlikely to provide significant benefit, it is clear that a certain level of ambivalence remains with regard to withdrawing treatment. Given (...) that the absence of clinical benefit means treating patients is not only ethically questionable but also taxing on resources that could meet the needs of others, this ambivalence is troubling. Equally, the enduring ambivalence of professionals might be taken to indicate that the issue warrants further attention. In this paper, we review the academic literature on the ethical equivalence of withdrawing and withholding medical treatment. While we are not in outright disagreement with the arguments presented, we suggest that asserting theoretical and decontextualized claims about the ethical equivalence of withdrawing and withholding life-saving treatment does not fully illuminate the moral questions associated with the relevant clinical realities. We argue that what is required is a broader perspective, one rooted in an understanding that withdrawing and withholding life-saving treatment are different practices, the meanings of which are fully comprehensible only through an appreciation of their place within the practice of healthcare more generally. Such an account suggests that if one is to engage with the inappropriate protraction of life-saving treatment resulting from healthcare professionals’ disinclination to withdraw it, then the differences between these practices should be taken seriously. (shrink)

One of the most challenging and rewarding roles for in-house hospital attorneys is serving as a member of their hospital’s Bioethics Committee. As a member of the Committee, an attorney assists in developing institutional ethics policies and guidelines, and also participates in ethics consultations involving disputes about patient care. Institutions such as the Author’s employer, Texas Children’s Hospital, promote open and honest communications between members of a patient’s health care team and the patient’s parents and family; however, when communications break (...) down, the Committee’s goal is to provide an objective forum where disputes can be discussed and hopefully resolved in a professional, ethical manner. (shrink)