Background Making the right decisions, while simultaneously showing respect for patient autonomy, represents a great challenge to nursing home staff in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation to dying patents in end-of-life. Objectives To study how physicians and nurses protect nursing home patients' autonomy in end-of-life decisions, and how they justify their practice. Design A qualitative descriptive design with analysis of the content of transcribed in-depth interviews with physicians and nurses. Participants Nine (...) physicians and ten nurses in 10 nursing homes in Norway. Results and interpretations Assessment of the patient's competence to consent to treatment is almost absent. The physicians build their practice on the principles of beneficence and nonmaleficence. Nurses tend to trust the patients' rejection of life support, even when the patients have difficulty speaking or suffer from dementia. Relatives were, according to the health personnel, included in decision-making processes to a very limited extent. However, futile life support is sometimes provided contrary to the physicians' judgement of what constitutes the patient's best interest on occasions when they are pressurised by next of kin. Conclusions The study reveals a need to improve decision-making routines according to ethical ideals and legislation. Conflicts between relatives and healthcare professionals in the decision-making process deflect the focus from searching for the best possible treatment for the terminal patient. Further discussion is required as to whether the concept of autonomy is applicable in situations in which the patient is impaired and dying. (shrink)

Objectives: To compare non-treatment decision making by general practitioners and geriatricians in response to vignettes. To see whether the doctors’ decisions were informed by ethical or legal reasoning.Design: Qualitative study in which consultant geriatricians and general practitioners randomly selected from a list of local practitioners were interviewed. The doctors were asked whether patients described in five vignettes should be admitted to hospital for further care, and to give supporting reasons. They were asked with whom they would consult, who they (...) believed ought to make such decisions, and whether the relatives’ preferences would influence their decision making.Main measures: To analyse the factors influencing the doctors’ decisions not to admit otherwise terminally ill patients to hospital for life prolonging treatment.Results: Seventeen GPs and 18 geriatricians completed the interview. All vignettes produced strong concordance in decision making between both groups. Ten per cent of the doctors would provide life prolonging treatment to patients with severe brain damage. Most would admit a surgical patient regardless of age or disability. Medical reasons were largely used to explain decision making. The wishes of relatives were influential and resource considerations were not. There was variability regarding decision making responsibility.Conclusions: Little attempt was made to link decision making with ethical or legal concepts and there may have been non-recognition, or denial, of the ethical consequences of failure to admit. The process of decision making may involve deception. This may be conscious, because of the illegality of euthanasia, or unconscious , because of deepseated medical and societal reluctance to accept that intentionally withholding life prolonging treatment may equate with intentionally causing death. (shrink)

In Japan, people are negative towards life-prolonging treatments. Laws that regulate withholding or discontinuing life-prolonging treatments and advance directives do not exist. Physicians, however, view discontinuing life-prolonging treatments negatively due to fears of police investigations. Although ministerial guidelines were announced regarding the decision process for end-of-life care in 2007, a consensus could not be reached on the definition of end-of-life and conditions for withholding treatment. We established a forum for extended discussions (...) and consensus building on this topic. (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)

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)

Background: The increasing number of elderly people in nursing homes with failing competence to give consent represents a great challenge to healthcare staff’s protection of patient autonomy in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation. The lack of national guidelines and internal routines can threaten the protection of patient autonomy. Objectives: To place focus on protecting patient autonomy in the decision-making process by studying how relatives experience their role as substitute decision-makers. Design: A qualitative descriptive (...) design with analysis of the contents of transcribed in-depth interviews with relatives. Participants: Fifteen relatives of 20 patients in 10 nursing homes in Norway. Results and Interpretations: The main findings reveal deficient procedures for including relatives in decision-making processes. Relatives have poor knowledge about the end of life, and there is little discussion about their role as substitute decision-makers for patients who are not competent to give consent. Few relatives understand the concept of patient autonomy. In Norway the treating physician is responsible for patient treatment. When relatives are included in discussions on treatment, they perceive themselves as responsible for the decision, which is a burden for them afterwards. This qualitative study describes relatives’ experiences, thus providing important information on the improvement potential with the main objective of safeguarding patient autonomy and caring for relatives. Conclusion: The study reveals failing procedures and thus a great potential for improvement. Both ethical and legal aspects must be addressed when considering patient autonomy. (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)

In The Netherlands, it is openly acknowledged that the parents' ability to take care of their child plays a role in the decision-making process over administration of life-prolonging treatment to severely defective newborn babies. Unlike other aspects of such decision-making process up until the present time, the ‘ability to take care’ has not received specific attention in regulation or in empirical research. The present study is based on interviews with neonatologists in two Dutch NICUs concerning their definition (...) of the ability to take care and its relevance in non-treatment decisions. All of the respondents think that the ability to take care consists of more than one factor. Most doctors mention the parents' emotional state, social network and cognitive abilities. Some doctors mention the presence of psychological conditions in the parents, their financial situation and physical condition. A few refer to the parents' experience and age, their chances to have another baby and their cultural background. Most doctors think the ability to take care has a secondary relevance in the decision-making process, while the primary concern is assessing the condition of the child. A substantial minority thinks the ability to take care does not play any role, while one doctor thinks it is a factor of primary importance. The study constitutes an important stepping-stone for future research in The Netherlands and elsewhere. (shrink)

오늘날 발달한 의학기술로 인해 우리는 연명치료와 호스피스 · 완화의료 등 죽음과 관련된 의료, 즉 웰다잉(Well-dying)의 문제에 관심을 가지게 되었다. 웰다잉 문제의 핵심은 임종기 환자의 삶의 질뿐만 아니라 죽음의 질의 문제이다. 이러한 문제들은 우리에게 연명치료 중단 및 호스피스・완화의료의 증대와 관련하여 법적, 제도적 과제와 함께 임종기 환자의 죽음교육의 문제를 제기한다. 이 논문은 연명치료 중단과 호스피스 · 완화의료에서 비종교인에 대한 죽음교육의 문제를 다루고 있다. 비종교인들이 내세 관념 없이도 평안한 죽음을 맞이하기 위해서 해결해야 할 과제는 죽음의 두려움을 어떻게 극복하는가의 문제이다. 이 논문은 비종교인의 죽음에 (...) 대한 두려움을 극복하는 문제를 니체와 에피쿠로스의 철학을 통해 살펴본다. 니체는 “삶을 완성시키는 죽음”, “주인으로서 당당하게 맞이하는 죽음”을 위해 이성적이고 자유로운 죽음을 강조한다. 이러한 니체의 죽음관을 통해 연명치료 중단의 철학적 근거를 살펴보고 ‘죽음의 의료화’에 의해 야기되는 현대인의 소외된 죽음에 대해 니체의 사상을 통해 대안을 제시한다. 또한 내세 관념이 없어도 죽음에 대해 두려워할 근거가 없음을 논거를 통해 제시하는 에피쿠로스의 철학을 살펴본다. 에피쿠로스는 죽음에 대한 두려움으로부터 우리를 해방시켜주고, 니체는 죽음이 삶의 끝이 아니라 삶의 완성임을 일깨워준다. 우리는 이 두 철학자의 가르침을 통해 연명치료 중단과 호스피스 · 완화의료를 선택할 때의 정신적 위안을 얻을 수 있을 것이다. 이러한 철학적 위안이 환자 및 환자 가족에 대한 의미 있는 죽음교육의 근거가 될 것이다. (shrink)

Surgical “buy-in” is an “informal contract between surgeon and patient in which the patient not only consents to the operative procedure but commits to the post-operative surgical care anticipated by the surgeon.”1 Surgeons routinely assume that patients wish to undergo treatment for operative complications so that the overall treatment course is “successful,” as in the treatment of a post-operative infection. This article examines occasions when patients buy-in to a treatment course that carries risk of complication, yet (...) refuse treatment when complications arise. We coin this counter-phenomenon “cashing-out.” Cashing-out may elicit negative feelings among careproviders. We question why patients or families may wish to cash-out. One reason may be the changing epistemological position of patients as they experience a complication. The shift from the hypothetical discussion of complications during the initial informed-consent process to the experience of having a complication represents new knowledge. Patients and families may use this knowledge as the basis to revoke consent for some or all of the remaining treatment course. This article seeks to understand cashing-out in terms of the patients’ experiences. We hope to prompt recognition of this phenomenon across medical contexts and to provide impetus for further work to understand why patients may wish to cash-out. (shrink)

In English law there is a strong (though rebuttable) presumption that life should be maintained. This article contends that this presumption means that it is always unlawful to withdraw life-sustaining treatment from patients in permanent vegetative state (PVS) and minimally conscious state (MCS), and that the reasons for this being the correct legal analysis mean also that such withdrawal will always be ethically unacceptable. There are two reasons for this conclusion. First, the medical uncertainties inherent in the (...) definition and diagnosis of PVS/MCS are such that, as a matter of medical fact, it can never be established, with the degree of certainty necessary to rebut the presumption, that it is not in the patient’s best interest to remain alive. And second (and more controversially and repercussively), that even if permanent unconsciousness can be unequivocally demonstrated, the presumption is not rebutted. This is because there is plainly more to human existence than consciousness (or consciousness the markers of which can ever be demonstrated by medical investigations). It can never be said that the identity of the patient whose best interests are at stake evaporates (so eliminating the legal or ethical subject) when that person ceases to be conscious. Nor can it be said that the best interests of an unconscious person do not mandate continued biological existence. We simply cannot know. That uncertainty is legally conclusive, and (subject to resource allocation questions and views about the relevance of family wishes and the previously expressed wishes of the patient) should be ethically conclusive. (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)

Introduction: Decisions to withdraw or withhold curative or life-sustaining treatment can have a huge impact on the symptoms which the palliative-care team has to control. Palliative-care patients and their relatives may also turn to palliative-care physicians and nurses for advice regarding these treatments. We wanted to assess Indian palliative-care nurses and physicians’ attitudes towards withholding and withdrawal of curative or life-sustaining treatment. Method: From May to September 2008, we interviewed 14 physicians and 13 nurses working in (...) different palliative-care programmes in New Delhi, using a semi-structured questionnaire. For the interviews and analysis of the data we followed Grounded-Theory methodology. Results: Withholding a curative or life-sustaining treatment which may prolong a terminal cancer patient’s life with a few weeks but also has severe side-effects was generally considered acceptable by the interviewees. The majority of the interviewees agreed that life-sustaining treatments can be withdrawn in a patient who is in an irreversible coma. The palliative-care physicians and nurses were of the opinion that a patient has the right to refuse life-saving curative treatment. While reflecting upon the ethical acceptability of withholding or withdrawal of curative or life-sustaining treatment, the physicians and nurses were concerned about the whole patient and other people who may be affected by the decision. They were convinced they can play an important advisory role in the decision-making process. Conclusion: While deciding about the ethical issues, the physicians and nurses do not restrict their considerations to the physical aspects of the disease, but also reflect upon the complex wider consequences of the treatment decisions. (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 (the right to life). 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)

Modern medicine provides unprecedented opportunities in diagnostics and treatment. However, in some situations at the end of a patient’s life, many physicians refrain from using all possible measures to prolong life. We studied the incidence of different types of treatment withheld or withdrawn in 6 European countries and analyzed the main background characteristics.

A large part of the debate around the right to refuse life-prolonging treatment of anorexia nervosa sufferers centers on the issue of competence. Whether or not the anorexic should be allowed to refuse life-saving treatment does not depend solely or primarily on competence. It also depends on whether the anorexic’s suffering is bearable or tractable, and on the degree of involvement of the family in the therapeutic process. Anorexics could be competent to refuse lifesaving (...) class='Hi'>treatment (Giordano 2008). However, the anorexic’s refusal of life-saving treatment should not be respected purely because it is a competent decision. In fact, anorexia has two characteristics that weaken the strength of the principle .. (shrink)

People who suffer from eating disorders often have to be treated against their will, perhaps by being detained, perhaps by being forced to eat. In this paper it is argued that whilst forcing compliance is generally acceptable, there may be circumstances under which a sufferer's refusal of consent to treatment should be respected. This argument will hinge upon whether someone in the grip of an eating disorder can actually make competent decisions about their quality of life. If so, (...) then the decision to refuse therapy may be on a par with other decisions to refuse life‐prolonging therapy made by sufferers of debilitating chronic, or acute onset terminal illness. In such cases, palliation might justifiably replace aggressive therapy. The argument will also draw heavily on the distinction between competent refusal of therapy and passive euthanasia, and the distinction between incompetent and irrational decisions. Both distinctions will then be applied to decisions to refuse food. The extent to which sufferers from anorexia nervosa can be categorised as either incompetent or irrational will be examined. It is against this background that it will be argued that at least some of those who suffer from eating disorders should have their refusals respected, even if they may die as a result. (shrink)

This book offers an in-depth analysis of the wide range of issues surrounding "passive euthanasia" and "allow-to-die" decisions. The author develops a comprehensive conceptual model that is highly useful for assessing and dealing with real-life situations. He presents an informative historical overview, an evaluation of the clinical settings in which treatment abatement takes place, and an insightful discussion of relevant legal aspects. The result is a clearly articulated ethical analysis that is medically realistic, philosophically sound, and legally viable.

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)

This article, prompted by an extended essay published in theJournal of Medical Ethicsby 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 inAiredale 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)

The technological advances in medicine, including prolongation of life, have constituted several dilemmas at the end of life. In the context of the Belgian debates on end-of-life care, the views of Muslim women remain understudied. The aim of this article is fourfold. First, we seek to describe the beliefs and attitudes of middle-aged and elderly Moroccan Muslim women toward withholding and withdrawing life-sustaining treatments. Second, we aim to identify whether differences are observable among middle-aged and elderly (...) women’s attitudes toward withholding and withdrawing life-sustaining treatments. Third, we aim to explore the role of religion in their attitudes. Fourth, we seek to document how our results are related to normative Islamic literature. Qualitative empirical research was conducted with a sample of middle-aged and elderly Moroccan Muslim women living in Antwerp and with experts in the field. We found an unconditional belief in God’s sovereign power over the domain of life and death and in God’s almightiness. However, we also found a tolerant attitude, mainly among our middle-aged participants, toward withholding and withdrawing based on theological, eschatological, financial and quality of life arguments. Our study reveals that religious beliefs and worldviews have a great impact on the ethical attitudes toward end-of-life issues. We found divergent positions toward withholding and withdrawing life-sustaining treatments, reflecting the lines of reasoning found in normative Islamic literature. In our interviews, theological and eschatological notions emerged as well as financial and quality of life arguments. (shrink)

Previous research has suggested that individuals who identify as being more religious request more aggressive medical treatment at end of life. These requests may generate disagreement over life-sustaining treatment (LST). Outside of anecdotal observation, however, the actual role of religion in conflict over LST has been underexplored. Because ethics committees are often consulted to help mediate these conflicts, the ethics consultation experience provides a unique context in which to investigate this question. The purpose of this paper (...) was to examine the ways religion was present in cases involving conflict around LST. Using medical records from ethics consultation cases for conflict over LST in one large academic medical centre, we found that religion can be central to conflict over LST but was also present in two additional ways through (1) religious coping, including a belief in miracles and support from a higher power, and (2) chaplaincy visits. In-hospital mortality was not different between patients with religiously versus non-religiously centred conflict. In our retrospective cohort study, religion played a variety of roles and did not lead to increased treatment intensity or prolong time to death. Ethics consultants and healthcare professionals involved in these cases should be cognisant of the complex ways that religion can manifest in conflict over LST. (shrink)

The Jewish religious tradition summons its adherents to save life. For religious Jews preservation of life is the ultimate religious commandment. At the same time Jewish law recognizes that the agony of a moribund person may not be stretched. When the time to die has come this has to be respected. The process of dying should not needlessly be prolonged. We discuss the position of two prominent Orthodox Jewish authorities – the late Rabbi Moshe Feinstein and Rabbi J (...) David Bleich – towards the role of life-sustaining treatment in end-of-life care. From the review, the characteristic halachic and heterogeneous character of Jewish ethical reasoning appears. The specificity of Jewish dealing with ethical dilemmas in health care indicates the importance for contemporary healthcare professionals of providing care which is sensitive to a patient’s culture and worldview. (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)

“Playing God” is the charge frequently leveled when physicians and patients agree to withdraw life-sustaining medical treatments and let the patient die. The accusation rings hollow in the context of four hundred years of moral reflection on the duty of an individual to undergo medical treatments to preserve life. From the teachings of Soto and Banez in the 16th century through the President's, Commission 1983 report ‘deciding to forego life-sustaining treatments’ there is a clear and constant teaching (...) that though life is sacred it is not an absolute and our moral duty to preserve it is limited and based on rational reflection. No patient need undergo any treatment or procedure that is “disproportionately” costly, burdensome, or painful. The assessment of whether to accept or reject a proposed treatment is in part subjective and belongs to the individual patient. The only remaining issue is how to make that judgment for those unable to speak for themselves. (shrink)

The present article reviews the state of public debate and legal provisions concerning end‐of‐life decision‐making in Italy and offers an evaluation of the moral and legal issues involved. The article further examines the content of a recent law concerning informed consent and advance treatment directives, the main court pronouncements that formed the basis for the law, and developments in the public debate and important jurisprudential acts subsequent to its approval. The moral and legal grounds for a positive evaluation (...) of this law, which attests that the patient may withhold or withdraw from life‐prolonging treatment, will be offered with reference to liberal approaches and particularly to the frameworks of care and virtue ethics; but reasons will also be offered in order to consider not only the latter but also broader range of end‐of‐life treatment decisions as morally apt options. In this light, we argue in favour of a further development of the Italian legislation to encompass forms of assisted suicide and active euthanasia. (shrink)

This article explores the links between our roles as academics, advocates, and activists, focusing on our research on treatment decisions for patients in vegetative and minimally conscious states. We describe how our work evolved from personal experience through traditional social science research to public engagement activities and then to advocacy and activism. We reflect on the challenges we faced in navigating the relationship between our research, advocacy, and activism, and the implications of these challenges for our research ethics and (...) methodology—giving practical examples of how we worked with research participants, wrote up case studies and developed interventions into legal debates. We also address the implications of the impact agenda—imposed by the British Research Excellence Framework— for our actions as scholar‐activists. Finally, we ask how practicing at the borders of academia, advocacy, and activism can inform research—helping to contextualize, sensitize, and engage theory with practice, leading to a more robust analysis of data and its implications, and helping to ensure a dialogue between research, theory, lived experience, front‐line practice, law, and public policy. (shrink)

BackgroundEthically challenging critical events and decisions are common in nursing homes. This paper presents nursing home doctors’ descriptions of how they include the patient and next of kin in end-of-life decisions.MethodsWe performed ten focus groups with 30 nursing home doctors. Advance care planning; aspects of decisions on life-prolonging treatment, and conflict with next of kin were subject to in-depth analysis and condensation.ResultsThe doctors described large variations in attitudes and practices in all aspects of end-of-life decisions. (...) In conflict situations, many doctors were more concerned about the opinion of next of kin than ensuring the patient’s best interest.ConclusionsMany end-of-life decisions appear arbitrary or influenced by factors independent of the individual patient’s values and interests and are not based on systematic ethical reflections. To protect patient autonomy in nursing homes, stronger emphasis on legal and ethical knowledge among nursing home doctors is needed. (shrink)

This article explores how the law of England and Wales1 has responded thus far to medical and clinical advances that have enabled patients with prolonged disorders of consciousness to survive. The authors argue that, although the courts have taken account of much of the science, they are now lagging behind, with the result that some patients are being denied their legal rights under the Mental Capacity Act 2005. The article further argues that English law does not comply with the United (...) Kingdom’s commitments under the United Nations Convention on the Rights of Persons with Disabilities. Stressing the need for the law to keep in step with advances in science, the article concludes with robust recommendations for improvements, based on the latest research in neuroscience, to the way in which life-sustaining treatment decisions are made. This would mean that the wishes of patients, including those with covert awareness, can be better reflected in best interests assessments. (shrink)

In the last few years there has been intense debate in Italy on administration of life-prolonging treatment to premature babies at the edge of viability. In 2006, a group of experts based in Florence drafted recommendations known as Carta di Firenze (CdF) for responsible use of intensive care for premature infants between 22 and 25 weeks of gestational age (GA). The CdF was later endorsed by several medicoprofessional associations, but was followed by recommendations by the Ministry of (...) Health mandating resuscitation for all premature babies regardless of GA and parental consent. Recent statements from medicoprofessional bodies seem to show that the ‘always resuscitate rule’ is not supported by many Italian doctors. We argue that ethically sensitive issues in medicine should be regulated with, and not against, the medical profession and its representative bodies. (shrink)

In this paper, we explore three separate questions that are relevant to assessing the prudential value of life in infants with severe life-limiting illness. First, what is the value or disvalue of a short life? Is it in the interests of a child to save her life if she will nevertheless die in infancy or very early childhood? Second, how does profound cognitive impairment affect the balance of positives and negatives in a child’s future life? (...) Third, if the life of a child with life-limiting illness is prolonged, how much suffering will she experience and can any of it be alleviated? Is there a risk that negative experiences for such a child will remain despite the provision of palliative care? We argue that both the subjective and objective components of well-being for children could be greatly reduced if they are anticipated to have a short life that is affected by profound cognitive impairment. This does not mean that their overall well-being will be negative, but rather that there may be a higher risk of negative overall well-being if they are expected to experience pain, discomfort, or distress. Furthermore, we point to some of the practical limitations of therapies aimed at relieving suffering, such that there is a risk that suffering will go partially or completely unrelieved. Taken together, these considerations imply that some life-prolonging treatments are not in the best interests of infants with severe life-limiting illness. (shrink)

Background: Recent research demonstrates that people sometimes make different medical decisions for others than they would make for themselves. This finding is particularly relevant to end-of-life decisions, which are often made by surrogates and require a trade-off between prolonging life and maintaining quality of life. We examine the impact of decision role, patient age, decision maker age and multiple individual differences on these treatment decisions. Methods: Participants read a scenario about a terminally ill cancer patient (...) faced with a choice between an aggressive chemotherapy regimen that will extend life by two years and palliative treatments to control discomfort for one remaining month. Participants were randomly assigned to one of three decision roles (patient, physician, or an abstract other) and the scenario randomly varied whether the patient was described as 25 or 65-years old. Results: When deciding for a 65-year old patient, approximately 60% of participants selected aggressive chemotherapy regardless of decision role. When deciding for a 25-year old patient, however, participants were more likely to select chemotherapy for a patient (physician role) or another person (abstract other) than for themselves (70%, 67%, and 59%, respectively). In addition, confidence that powerful others (eg, physicians) control one’s health, as well as respondents’ age and race, consistently predicted treatment choices. Conclusions: Patient age appears to influence medical decisions made for others but not those that we make for ourselves. These findings may help to explain the discord that often occurs when younger cancer patients refuse life-extending treatments. (shrink)

Objectives—The study was performed in order to investigate how end-of-life decisions are influenced by cultural and sociopolitical circumstances and to explore the compliance of doctors with patient wishesParticipants and measurement—Five hundred and thirty-five physicians were surveyed in Sweden , Germany , and in Russia by a questionnaire. The participants were recruited according to availability and are not representative. The questionnaire is based on the one developed by Molloy and co-workers in Canada which contains three case vignettes about an 82-year-old (...) Alzheimer patient with an acute life-threatening condition; the questionnaire includes different levels of information about his treatment wishes. We have added various questions about attitudes determining doctors' decision making process .Results—Swedish physicians chose fewer life-prolonging interventions as compared with the Russian and the German doctors. Swedish physicians would perform cardiopulmonary resuscitation in the event of a cardiac arrest less frequently, followed by the German doctors. More than half the Russian physicians decided to perform CPR irrespective of the available information about the patient's wishes. Level of dementia emerged as the most powerful determining attitude-variable for the decision making in all three countries.Conclusions—The lack of compliance with patient wishes among a substantial number of doctors points to the necessity of emphasising ethical aspects both in medical education and clinical practice. The inconsistency in the treatment decisions of doctors from different countries calls for social consensus in this matter. (shrink)

The medical profession consistently strives to uphold patient empowerment, equality and safety. It is ironic that now, at a time where advances in technology and knowledge have given us an increased capacity to preserve and prolong life, we find ourselves increasingly asking questions about the value of the lives we are saving. A recent editorial by Professor Raanan Gillon questions the emphasis that English law places on the sanctity of life doctrine. In what was described by Reverend Nick (...) Donnelly as a “manifesto for killing patients”, Professor Gillon argues that the sanctity of life law has gone too far because of its disregard for distributive justice and an incompetent person’s previously declared autonomy. This review begins by outlining the stance of the sanctity of life doctrine on decisions about administering, withholding and withdrawing life-prolonging treatment. Using this as a foundation for a rebuttal, a proposal is made that Professor Gillon’s assertions do not take the following into account. (shrink)

A book for nurses, doctors and all who provide end of life care, this essential volume guides readers through the ethical complexities of such care, including current policy initiatives, and encourages debate and discussion on their controversial aspects. dived into two parts, it introduces and explains clinical decision making-processes about which there is broad consensus, in line with guidance documents issued by WHO, BMA, GMC, and similar bodies. The changing political and social context where 'patient choice' has become a (...) central idea, and the broadened scope of potients' best interests, have added to the complexity of decision-making in end of life care. The authors discuss issues widely encountered by GPs, nurses, and hospital clinicians. These include patient choice, consent, life-prolonging treatment, and symptom relief including sedation. Part rwo explores the more controversial current end of life care initiatives, such as advance care planning preferred place of care and death, euthanais and assited suicide, extended ideas of 'best interests', and the view that there are therapeutic duties to the relatives of Throughout their discussion the authors draw attention to loose ends and contradictions in some of the proposals. Examining the current policy of comsumerist choice, they reject its place in the health service, proposing a a realistic, fair, humane and widely adoptable system of end of life care. As knowledge of ethical theories is required in training courses, and the vocabulary of ethical theory is widespread in current discussions a substantial appendix on ethical theories and terms is available online. Written by the same authors as The Philosophy of Palliative Care: Critique and Reconstruction, which won the Medical Journalists' Association Specialits Book Award 2007, this new book for non-specialists is essential reading for all health care professionals involved in providing end of life care. (shrink)

The idea that we human beings have souls that can continue to have conscious experiences after the deaths of our bodies is controversial in contemporary academic bioethics; this idea is obviously present whenever questions about harm at the end of life are discussed, but this idea is often ignored or avoided because it is more comfortable to do so. After briefly discussing certain types of experiences that lead some people to believe in souls that can survive the deaths of (...) their bodies, I begin to answer the question, "If personal postmortem survival of some sort is real, then how should this alter the way we approach our bioethical discussions about death, the harm of death, and harming the dead?" The bioethics issues I briefly discuss in the remaining two sections are the debate about defining death and the decision whether to forego life-prolonging treatments. (shrink)

OBJECTIVES: To study attitudes in the Danish population towards treatment of severely handicapped and extremely preterm infants and to define areas of consensus and controversy. DESIGN: Mail-delivered questionnaire. SETTING: Denmark. Survey sample--A random sample of 1080 persons aged from 18 to 45 years. RESULTS: The overall response rate was 68%. There was strong consensus (more than 75% agreement) that life-prolonging treatment should be provided for an infant born after 24 weeks' gestation with respiratory distress and, for (...) an infant with myelomeningocele, when the parents were in favour of treatment. Further, there was almost uniform agreement that not all infants should be treated no matter how serious the condition. Major controversies concerned the severity of a condition needed to justify omission of life-prolonging treatment, the role of parental attitude and the options in non-treatment cases. Forty-six per cent thought it ought to be legal to kill the infant in at least some of these cases. CONCLUSION: Although the study revealed wide divergences of opinion with regard to questions about limits of treatment and about end-of-life decisions it also showed that there was general acceptance both that life-prolonging treatment ought to be provided even in relatively severe cases if this was in accordance with parental wishes, and that life should not be saved at all costs. (shrink)

Many of the elderly in nursing homes are very ill and have a reduced quality of life. Life expectancy is often hard to predict. Decisions about life-prolonging treatment should be based on a professional assessment of the patient’s best interest, assessment of capacity to consent, and on the patient’s own wishes. The purpose of this study was to investigate and compare how these types of decisions were made in nursing homes and in hospital wards. Using (...) a questionnaire, we studied the decision-making process for 299 nursing home patients who were treated for dehydration using intravenous fluids, or for bacterial infections using intravenous antibiotics. We compared the 215 patients treated in nursing homes to the 84 nursing home patients treated in the hospital. The patients’ capacity to consent was considered prior to treatment in 197 of the patients treated in nursing homes and 56 of the patients treated in hospitals. The answers indicate that capacity to consent can be difficult to assess. Patients that were considered capable to consent, were more often involved in the decision-making in nursing homes than in hospital. Next of kin and other health personnel were also more rarely involved when the nursing home patient was treated in hospital. Whether advance care planning had been carried out, was more often unknown in the hospital. Hospital doctors expressed more doubt about the decision to admit the patient to the hospital than about the treatment itself. This study indicates a potential for improvement in decision-making processes in general, and in particular when nursing home patients are treated in a hospital ward. The findings corroborate that nursing home patients should be treated locally if adequate health care and treatment is available. The communication between the different levels of health care when hospitalization is necessary, must be better. ClinicalTrials. gov NCT01023763 [The registration was delayed one month after study onset due to practical reasons]. (shrink)

In this issue of the journal “Lee Elder”,1 a pseudonymous dissident Jehovah's Witness , previously an Elder of that faith and still a JW, joins the indefatigable Dr Muramoto2–5 in arguing that even by their own religious beliefs based on biblical scriptures JWs are not required to refuse potentially life-saving blood transfusions. Just as the “official” JW hierarchy has accepted that biblical scriptures do not forbid the transfusion or injection of blood fractions so too JW theology logically can and (...) should permit the transfusion of whole blood when this is medically required.Few doctors would argue that they should override the adequately autonomous decisions of Jehovah's Witnesses to refuse blood transfusions even if they are likely to die as a result of such transfusions. However, there is a case to be made for doctors asking such patients to reflect on their potentially fatal refusal of blood and for drawing to these patients' attention the reasoning of members of their own faith that justifies acceptance of potentially life-saving blood transfusions. What is that case? Simply that doctors' primary professional duty to try to benefit the health of their patients entails trying to save their patients' lives when and if doing so will benefit their patients' health. Of course this is not an absolute duty overriding all other duties; in particular if patients who are adequately autonomous to do so refuse such life-prolonging treatment doctors must generally accept such refusal, however sadly. This editorial endorses that view in the case of adequately autonomous legally competent JWs. (In another paper in this issue of the journal Professor Shimon Glick argues that ethics committees should be empowered—as they now are in Israel—to override even competent refusals of life-prolonging treatment where the committee judges that …. (shrink)

Recent advances in life-sustaining treatments and technologies, have given rise to newly-emerged, critical and sometimes, controversial questions regarding different aspects of end-of-life decision-making and care. Since religious values are among the most influential factors in these decisions, the present study aimed to examine the Islamic scholars' views on end-of-life care. A structured interview based on six main questions on ethical decision-making in end-of-life care was conducted with eight Shiite experts in Islamic studies, and was analyzed through (...) deductive content analysis. Analysis revealed certain points in Islamic views on the definition of death and the persons making decisions about end-of-life care. According to the participants, in addition to conventional criteria such as absence of heartbeat and respiration, the irreversible cessation of human voluntary acts are considered to be the criteria in establishing death. The participants also recognized physicians as the main authorities in verifying signs of death. Furthermore, it was emphasized that life preservation and continuation of care must be sensible, and the patient can request not to have death-prolonging procedures started or continued. In the view of participants, patient's autonomy cannot be the sole basis for all measures, but Islamic ethical and jurisprudential principles should be relied upon to make correct and sensible decisions whether to continue or stop terminal patients' care. Final decisions should be made by a team of experts, and physicians must be at the center of such a team. Finally, we suggest that a guideline in keeping with Islamic norms on human life and death, purpose of life, God's will, boundaries of man's authority, and the physician's ethical duties and obligations should be developed. (shrink)