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

The use of Nasogastric (NG) feeding in the provision of artificial nutrition and hydration at the end of life has, for the most part, been regarded as futile by the medical community. This position has been led chiefly by prevailing medical data. In Singapore, however, there has been an increase in its utilization supported primarily by social, religious and cultural factors expressly to prolong life of the terminally ill patient. Here this article will seek to review the (...) ethical and clinical impact of this treatment and provide some understanding for such decisions in the light of the Duty of Palliative Care [DoPC]. Complemented by virtue ethics theory, the DoPC highlights and seeks to realize the individual case specific goals of care that maximize comfort and quality of life of the patient in the face of rapid attenuation of treatment options and the eminence of the final outcome by considering each of these factors individually in order to provide the best outcome for the patient and the family. (shrink)

An important examination of the theological, spiritual, and ethical issues surrounding death. At the end of a life of faithfulness comes our dying. To approach it as faithfully as we have our living calls for some serious forethought. Because one of the simplest facts of life—that we all die—seems like the most complicated thing we do. Not only have advances in medical technology saved lives, but they also have prolonged death, and raise a number ethical, moral, social, and (...) theological issues. How far should we go to sustain life? Is it right to withdraw artificial feeding from the dying? Is it wrong to end the lives of those in pain? No matter who we are, dealing with these sorts of choices near the end of life is difficult to do on our own.Faithful Living, Faithful Dying: Anglican Reflections on End of Life Care brings together the wisdom of a task force created by the 72nd General Convention of the Episcopal Church to study what faithful living and faithful dying mean today. The task force’s reflections, published for the first time in this book, assist individuals, congregations, and the Church as a whole to disentangle the thicket of ethical, theological, pastoral, and policy concerns. (shrink)

The logical problem of artificial intelligence—the question of whether the notion sometimes referred to as ‘strong’ AI is self-contradictory—is, essentially, the question of whether an artificial form of life is possible. This question has an immediately paradoxical character, which can be made explicit if we recast it (in terms that would ordinarily seem to be implied by it) as the question of whether an unnatural form of nature is possible. The present paper seeks to explain this paradoxical (...) kind of possibility by arguing that machines can share the human form of life and thus acquire human mindedness, which is to say they can be intelligent, conscious, sentient, etc. in precisely the way that a human being typically is. (shrink)

Recent animal research suggests that it may soon be possible to support the human fetus in an artificial uterine environment for part of a pregnancy. A technique of extending gestation in this way (“ectogestation”) could be offered to parents of extremely premature infants (EPIs) to improve outcomes for their child. The use of artificial uteruses for ectogestation could generate ethical questions because of the technology’s potential impact on the point of “viability”—loosely defined as the stage of pregnancy beyond (...) which the fetus may survive external to the womb. Several medical decisions during the perinatal period are based on the gestation at which infants are considered viable, for example decisions about newborn resuscitation and abortion, and ectogestation has the potential to impact on these. Despite these possible implications, there is little existing evidence or analysis of how this technology would affect medical practice. In this paper, we combine empirical data with ethical analysis. We report a survey of 91 practicing Australian obstetricians and neonatologists; we aimed to assess their conceptual understanding of “viability,” and what ethical consequences they envisage arising from improved survival of EPIs. We also assess what the ethical implications of extending gestation should be for newborn and obstetric care. We analyze the concept of viability and argue that while ectogestation might have implications for the permissibility of neonatal life‐prolonging treatment at extremely early gestation, it should not necessarily have implications for abortion policy. We compare our ethical findings with the results of the survey. (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.

The Court of Appeals of Indiana upheld the trial court's judgment and refused to create a new tort for “wrongful prolongation of life” because existing law offers a remedy to those who do not wish to be kept alive through artificial measures. Specifically, the court affirmed the trial court's dismissal in favor of Muncie Medical Investors, LP, the operator of Woodlands Nursing Home since the plaintiffs could have sought relief under I.C. § 16-36-1-8 which provides for court (...) resolution of disputes regarding an individual's treatment at the end of life.In 1992, Rebecca Taylor suffered a stroke that left her paralyzed on her left side and confined to a wheelchair. Taylor executed a living will in late 1993 directing that if she was suffering from a terminal illness with “no reasonable possibility of recovery,’’ then no “extraordinary means” to prolong her life should be used. (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.

The bioethical issues confronting the Jewish chaplain in a long-term care facility are critical, particularly as life-support systems become more sophisticated and advance directives become more commonplace. May an elderly competent patient refuse CPR in advance if it is perceived as a life-prolonging measure? May a physician withhold CPR or artificial nutrition and hydration (which some view as basic care and not as therapeutic intervention) from terminal patients with irreversible illnesses? In this study of Jewish ethics relating (...) to these issues, the author carefully examines the moral implications and legal precedents in the literature. Jewish ethics, affirming a 'sanctity of life' position, suggest that while an elderly person may direct in advance that CPR not be administered in most instances, in the absence of a DNR (Do Not Resuscitate) order, CPR must be performed. In reference to 'tube-feeding', while there is some debate about whether elderly patients may refuse the initiation of 'tube-feeding', there is a consensus that once initiated, it may not be withdrawn. (shrink)

The idea of a happy death is one that startles and disgusts modern man. However, although that phrase is not often used today, that is what the Archbishop of Canterbury, Dr Donald Coggan, is to some extent considering in his Edwin Stevens lecture given to the Royal Society of Medicine. We are publishing extracts from that lecture by kind permission of the President of the Royal Society of Medicine. We have chosen those passages in the lecture which discuss the limits (...) of the doctor's responsibility to keep a patient alive, the erroneous idea that Christians believe in the artificial prolongation of life in all circumstances, and the most delicate question of the choice of patients who shall receive the costly benefits of modern medical technology. (shrink)

In the article the concept of natural death as used in end-of-life decision contexts is explored. Reviewing some recent empirical studies on end-of-life decision-making, it is argued that the concept of natural death should not be used as an action-guiding concept in end-of-life decisions both for being too imprecise and descriptively open in its current use but mainly since it appears to be superfluous to the kind of considerations that are really at stake in these situations. Considerations (...) in terms of the quality of life cost of the intervention in relation to the quality and length of life benefits of the same intervention. In referring to the concept of natural death we risk to blur these considerations and end up in difficult distinctions between what is a natural and non- or un-natural death, a distinction which it is argued is of no real moral interest. (shrink)

Imposing artificial feeding on people with anorexia nervosa may be unethical. This seems to be Heather Draper's suggestion in her article, ‘Anorexia Nervosa and Respecting a Refusal of Life‐Prolonging Therapy: A Limited Justification.’ Although this is an important point, I shall show that the arguments supporting this point are flawed. Draper should have made a brave claim: she should have claimed that people with anorexia nervosa, who competently decide not to be artificially fed, should be respected because everybody (...) is entitled to exercise their autonomy, not only ‘in the middle’ of their life, but also at the end of it, or when their own life is at stake, because autonomy also extends to the most difficult moments of our life, and, ultimately, ‘stretches [.*T*.*T*.] far out into the distance’ at the end of it. I explain why Draper should have made the brave claim, and why she has not made it. I conclude that a defence of people's entitlement to competently refuse artificial feeding cannot rest upon the arguments developed by Draper. Whether or not we should respect competent refusal of artificial feeding depends on the normative strength that we are ready to ascribe to the principle of autonomy, to the moral relevance that we ascribe to the circumstances in which a person's autonomy is exercised, and, perhaps, eventually, on our sense of compassion. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Patient Self-Determination ActElizabeth Leibold McCloskey (bio)What are the ethics of extending the length of life? We know that we cannot artificially end life (Thou Shalt not Kill), but how about artificially extending life? Is that always good, sometimes good?... In ethics, is keeping people alive the highest good? Should our priority be to keep people breathing?... What does basic religious ethics say about this?(John C. (...) Danforth, letter to the author, 19 August 1989)The Patient Self-Determination Act, signed into law as part of the Omnibus Budget Reconciliation Act of 1990 (OBRA '90) last November, marks the first time that Congress has passed legislation concerning the ethics of life-sustaining medical treatment. The bill was spearheaded by Senator John C. Danforth (RMO), who has a special interest in this area. An Episcopal priest, Danforth was formerly an assistant chaplain at New York's Memorial Sloan-Kettering Cancer Center and now sits as a senior member of the Senate Finance Committee, which oversees Medicare and Medicaid. Although Senator Danforth's legislative initiative was not a result of the Cruzan case, it was in his state of Missouri that the U.S. Supreme Court case involving removal of Nancy Cruzan's feeding tube arose (Cruzan v. Director of Missouri Department of Health, U.S. Supreme Court, 58 LW 4916, 26 June 1990). From his unique vantage point, he felt it was time to craft a legislative response to some of the difficult issues surrounding prolongation of life.The short answer to Senator Danforth's questions about when to artificially extend life is simple enough: people must be free to determine that for themselves. Common law and common sense dictate such a conclusion; living will and health care proxy statutes, enacted in almost every state, codify that right. The Catholic moral tradition teaches that one is not morally obligated to use extraordinary means to prolong life, a tradition shared both by the mainline Protestant and the reform and conservative Jewish community. Yet most people are unaware of their fundamental legal right to make such decisions, and as court cases from Quinlan (In re Quinlin, 137 N.J. Super. 227, 1975) to Cruzan demonstrate, few know [End Page 163] how to make arrangements for this right to be exercised if they become incapacitated.Meanwhile, health care practices are often driven by a denial of death. When Senator Danforth and Senator Daniel Patrick Moynihan (D-NY) introduced the bill on October 17, 1989, Senator Danforth said:More and more it is arguable that we play God by subjecting people to unwanted and sometimes unnecessary treatment, treatment that unnaturally prolongs the dying process. Our health care system has become obsessed with extending life, at times neglecting the caring component of medicine and trampling on the rights of patients.(Congressional Record 1989, 135:5.13566)The American Hospital Association estimates that 70 percent of deaths now occur after a determination to withhold or withdraw medical treatment. Many of those decisions are made without the benefit of an incapacitated patient's views, yet a Harvard study revealed that 95 percent of the population would like to prepare in advance for such decisions. Only 4 percent of hospitals have a systematic method of asking patients if they have an advance directive. Family members confront painful choices in the face of uncertainty about their loved one's wishes and it can be even more painful when a family knows the patient's desires but providers and the courts act otherwise because clear evidence is lacking.The Patient Self-Determination Act is rooted in the belief that people should be given information that enables them to specify the extent of medical treatment they wish to receive should they become incapacitated. The public should be educated about applicable state laws that protect the individual's right to make such choices through the use of an advance directive.The Act moves toward that goal by promoting knowledge of state laws. It requires every hospital, nursing home, home health agency, hospice, and health maintenance organization that participates in Medicaid or Medicare to routinely give all adult patients information about advance directives. Patients will also be given information on the... (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)

In 1992, Eluana Englaro was involved in a car accident in Italy that eventually left her in a permanent vegetative state requiring artificial nutrition and hydration. This paper, after briefly reviewing Eluana's case, gives a chronicle of Eluana last months until her death on 9 February 2009, and discusses the right-to-die controversy in Italy. For many years, Mr Englaro, Eluana's father, would litigate to enforce what he considered to be his daughter's wish to discontinue life-prolonging treatment. In July (...) 2008, the Court of Appeal of Milan has given its authorisation for artificial life support to be withdrawn. This ruling sparked a crusade, led by the government and the Vatican, against the court and Eluana's father, which included insinuations that the latter was murdering his daughter. Public opinion has overwhelmingly been sympathetic to the father's difficult decision, in stark contrast to the reactionary stance taken by the government. With the notable advances of medicine, doctors are increasingly faced with ethical issues. The vegetative state is just one of the many clinical conditions that obligate health professionals to reflect on ethical matters. The withdrawal of life-supporting care, and of artificial nutrition and hydration in particular in permanent vegetative state patients remains a measure which violates a tradition and a consolidated practice. It was thus inevitable that it would create great controversy. We should work towards making a decision process that ensures that continuation or suspension of artificial nutrition and hydration follows an explicit procedure, promoting the sharing and respect of the diverse moral responsibility of family members, nursing and medical staff. (shrink)

This article will focus on issues concerning the provision of artificial nutrition and hydration to patients who are extremely old, completely bedridden, and totally dependent on others. These patients have no advance directives, no malignancy, suffer from persistent but unstable disturbance of consciousness as well as severe cognitive impairment, and cannot eat sufficient amounts of food to maintain their lives. Should ANH be provided? Some would agree while others would maintain otherwise. The underlying values and normative theory behind each (...) argument are quite different. In this paper, I will present opinions, comments, and arguments concerning the provision of PANH to such patients and examine each using the Takahashi‘s three levels structure analysis. Utilitarianism is a fitting ethical theory for the third level in arguments against the provision of PANH to patients in question, and the non-religious sanctity of life doctrine covers the opposite position. (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 this article we aim to distinguish between the transhuman and posthuman condition, according to their anthropological, ontological, and ethical natures. We will show that the current historical moment can be considered the beginning of a transhuman civilisation, given that the characteristics of the transhuman are already present in today’s human being. We will show that a series of decisive limitations for belonging to the human condition are in the process of being transcended due to acquisition of attributes of divinity (...) that human beings do not currently possess: omnipotence, omnipresence , ex nihilo creation – starting from the divine creative ideation – and immortality. Humans are increasingly taking on the attributes of divinity in the process of human enhancements. We will discuss the ways in which technology allows the human to overcome these limitations, elevating humans past their current condition, in a process in which they gain technological transcendence. Excepting immortality, all other limitations, once exceeded, generate a transhuman condition. Immortality generates a posthuman condition, since it can only be obtained by modifying the human ontological status from that of a biological being to that of a resident being in informatics networks. In order to clarify this process, we will discuss the concepts of everlastingness and artificial life prolongation. (shrink)

BackgroundSome people with progressive neurological diseases find they need additional support with eating and drinking at mealtimes, and may require artificial nutrition and hydration. Decisions concerning artificial nutrition and hydration at the end of life are ethically complex, particularly if the individual lacks decision-making capacity. Decisions may concern issues of life and death: weighing the potential for increasing morbidity and prolonging suffering, with potentially shortening life. When individuals lack decision-making capacity, the standard processes of obtaining (...) informed consent for medical interventions are disrupted. Increasingly multi-professional groups are being utilised to make difficult ethical decisions within healthcare. This paper reports upon a service evaluation which examined decision-making within a UK hospital Feeding Issues Multi-Professional Team.MethodsA three month observation of a hospital-based multi-professional team concerning feeding issues, and a one year examination of their records. The key research questions are: a) How are decisions made concerning artificial nutrition for individuals at risk of lacking decision-making capacity? b) What are the key decision-making factors that are balanced? c) Who is involved in the decision-making process?ResultsDecision-making was not a singular decision, but rather involved many different steps. Discussions involving relatives and other clinicians, often took place outside of meetings. Topics of discussion varied but the outcome relied upon balancing the information along four interdependent axes: Risks, burdens and benefits; Treatment goals; Normative ethical values; Interested parties.ConclusionsDecision-making was a dynamic ongoing process with many people involved. The multiple points of decision-making, and the number of people involved with the decision-making process, mean the question of ‘who decides’ cannot be fully answered. There is a potential for anonymity of multiple decision-makers to arise. Decisions in real world clinical practice may not fit precisely into a model of decision-making. The findings from this service evaluation illustrate that within multi-professional team decision-making; decisions may contain elements of both substituted and supported decision-making, and may be better represented as existing upon a continuum. (shrink)

Background: In Israel, caring for people with end-stage dementia confined to home is mainly done by home care units, and in some cases by home hospice units, an alternative palliative-care service. Because life expectancy is relatively unknown, and the patient’s decision-making ability is poor, caring for this unique population raises ethical dilemmas regarding when to define the disease as having reached a terminal stage, as well as choosing between palliative and life-prolonging-oriented care. Objectives: Exploring and describing differences and (...) similarities of professional staff members’ (PSMs’) and family caregivers’ perceptions of caring for people with end-stage dementia in two different settings. Design: Qualitative research, using semi-structured interviews analyzed through a thematic content–analysis approach. Participants: Sixty-four interviews were conducted (24 PSMs and 40 family caregivers) in two care-settings—home hospice unit and home care unit. Ethical considerations: The study was approved by the Ethics Committee (BBL00118-17). Findings: We found dilemmas regarding palliative care to be the main theme, including definition of the disease as terminal, choosing “comfort” over “life-prolonging,” clarifying patients’ wishes and deciding whether or not to use artificial feeding. Discussion: Both PSMs and family caregivers deal with ethical dilemmas and have reached different conclusions, both legitimate. Comprehending dementia as a terminal disease influenced participants’ perceptions of the relevancy of palliative care for people with end-stage dementia. Discrepancies between PSMs and family caregivers in caring for people with end-stage dementia were found in both home hospice unit and home care unit environments, raising potential conflicts regarding decisions for end-of-life care. Conclusions: Communication between PSMs and family caregivers is crucial for the discussion about the discrepancies regarding the unique dilemmas of caring for people with end-stage dementia and bridging the gap between them. Lack of communication and resources can hamper the provision of an acceptable solution for quality and equality of care in the best interest of people with end-stage dementia. (shrink)

Autonomous decision-making over therapy options is not reducible to the refusal of unwanted medical intervention. This is a myth that has been imported from questionable assumptions in political economy, and is of little benefit to medical practice and the sometimes agonizing decisions which have to be taken by patients and their relatives. An individual's right to therapy abatement can be protected from abuse only in the context of a full understanding of autonomous choice; not merely the right to refuse, but (...) the opportunity to receive assistance and consider alternatives. Limits are also required on the role of the surrogate in the refusal of therapy. Policies endorsing therapy abatement and exercise of the right to forego life-sustaining therapy should carry cast iron guarantees that they will not be disadvantageous to the poor and undereducated members of society. It should also be noted that fears of unlimited life-prolongation have been greatly exaggerated. In an atmosphere of governmental indifference to the plight of the sick, with the notion of welfare tuned to market forces, there is a danger that self-determination can have a restricted meaning; the option of death in the context of an underfunded health service. This may not be the time to campaign for the right to refuse therapy, but rather the time to campaign for improvements to existing therapy. (shrink)

: This paper examines the main Jewish sources relevant to end-of-life ethics, two Talmudic stories, the early modern code of law (Shulhan Aruch), and contemporary Halakhaic (religious law) responsa. Some Orthodox rabbis object to the use of artificial life support that prolongs the life of a dying patient and permit its active discontinuation when the patient is suffering. Other rabbis believe that every medical measure must be taken in order to prolong life. The context of (...) the discussion is the recent release of the "Steinberg Report," which proposes a law regulating end-of-life issues in Israel. It is argued that the Orthodox rabbis base their views on a strongly positivist concept of the religious law. The rabbis deliberate the law as a manifestation of the will of God and try to stretch the law as much as possible in order to benefit the patient, even when it is good for the patient to die. Direct and active actions that kill are prohibited; certain forms of passive euthanasia and contrivances that terminate life support without needing direct human action are accepted. (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)

For the first time during evolution of life on this planet, a species has acquired the ability to direct its own genetic destiny. Following 200,000 years of evolution, modern man now has the technologies not only to eradicate genetic disease but also to prolong life and enhance desired physical and mental traits. These technologies include preimplantation diagnosis, cloning, and gene therapy in the germline on native chromosomes or by adding artificial ones. At first glance, we should all (...) be in favor of eliminating genetic diseases and enhancing genetic traits. Evolutionary considerations, however, uncover hidden dangers and suggest caution against the total embracement of such actions. The first major concern is that the genome will never be a completely reliable crystal ball for predicting human phenotypes. This is especially true for predictions concerning the performance of alleles in future generations whose populations might be subjected to different environmental and social challenges. The second, and perhaps more important, concern is that the end result of germline intervention and genetic enhancement will likely lead to the impoverishment of gene variants in the human population and deprive us of one of our most valued assets for survival in the future, our genetic diversity. BioEssays 25:815–821, 2003. © 2003 Wiley Periodicals, Inc. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:LettersJames L. Walsh, Moira M. McQueen, Kevin O'Rourke, and Jean deBloisEarly Delivery of the Anencephalic InfantMadam:In the March 1994 issue of the Kennedy Institute of Ethics Journal, Kevin O'Rourke and Jean deBlois have replied to an article of ours (KIEJ, December 1993) on the early induction of the anencephalic fetus. They agree with our conclusion that such early delivery may be morally acceptable, but argue that our justification is (...) flawed. Exchanges on the subject probably could continue ad nauseam; here we simply state some of the elements of their article that leave us perplexed.1. The phrase "prolonging the life of" (p. 49) has one meaning in the case of artificial life supports, which may be unwarranted interventions, but it has a different meaning when it refers to not interfering with a person's enjoyment of necessary natural means of preserving his or her life. Inducing labor prior to viability, which denies the natural means of life support without a possible substitute, has more in common with smothering a dying patient than the nonemployment of or withdrawing of artificial means of life support. To refer to the death of the fetus here as an effect is rather like saying that I suffocated you and the effect of the suffocation is your death. This is quite different from induction after viability where the induction can have different effects.2. If the authors were correct that "the prohibition on inducing delivery before viability is predicated upon the assumption that the fetus in utero is a human being with the potential for further development" (p. 49) and the anencephalic has none, why is there need to employ the principle of double effect? They say that there is no moral obligation to prolong the life of the anencephalic fetus. Just as there is no need for the principle in cases of withdrawing unwarranted artificial life support, so there would be no need for it here. Because the authors seem to perceive a complete disjunction between direct and indirect killing (allowing to die being in the category of indirect killing), it seems that they are unable to let their argument rest here, but have to justify the death that occurs.3. The example concerning smothering and the nonemployment of aggressive interventions (p. 49) explains well the difference between killing and allowing to die. But allowing to die is not indirectly killing since it occurs as a result of the disease and not from the causality of the agent.4. How can we cause something and not intend it? There are instances in which we simply "permit" evil events, but where we are not the cause. For example, evil events may be attributable to the bad will of others. Legislators make just laws knowing that some people of bad will will break them for their own advantage. Here the legislators really do permit evil. Neither are we the cause of death when we allow a person to die by not imposing unwarranted means of life support; we permit his or her death. But can we so readily designate by "permit" [End Page 184] what we knowingly choose to bring about? O'Rourke and deBlois use interchangeably "indirectly intended" and "unintended" for what is caused by our actions; "indirectly intended" is a better designation than "unintended." The whole package, including all foreseen effects, is intended. Evil "happening" (p. 51) as a result of an action that I place can refer either to evil as caused by my action or to evil as arising from a cause apart from my action. Only in this latter sense do I permit evil and not intend it, either directly or indirectly.5. The fourth condition of the principle of double effect is given as follows: "There must be a proportionately grave reason for placing the act. The greater the evil, the more cogent the reason must be for performing the act" (p. 50). How the authors can abstract from balancing goods and evils here is beyond us.6. We cannot follow the authors' use of the term "morally good" with respect to the induced delivery (p. 50). The problem is concerned with the morally right... (shrink)

Patients with advanced dementia suffer from severe cognitive and functional impairment, including eating disorders. The focus of our research is on the issue of life-sustaining treatment, specifically on the social and ethical implications of tube feeding. The treatment decision, based on values of life and dignity, involves sustaining lives that many people consider not worth living. We explore the moral approach to caring for these patients and review the history of the debate on artificial nutrition and hydration (...) showing the impact of the varying perceptions of the value of these patients' lives on changing norms. We argue that in light of the value of solidarity, decisions about life-sustaining treatment for patients with advanced dementia should be made on a case by case basis, as with any other patient, in consideration of the medical implications of the intervention which might best serve the goals of care for the individual patient. (shrink)

Ever since the 1960s, when medical science became capable of prolonging the dying process beyond bounds that many patients would find acceptable, people have sought “death with dignity,” or “a natural death,” or “a good death.” Once debilitation from a fatal affliction has reached a personally intolerable point, dying patients have sought to control the manner and timing of death via diverse techniques. Some sought the disconnection of life-sustaining medical interventions, such as respirators and dialysis machines. Beyond freedom from (...) unwelcome interventions, some patients intent on avoiding suffering sought access to pain relief medication—even in dosages posing some risk of hastening death. Other dying patients sought access to deep sedation, even knowing that they would never emerge from the resultant unconsciousness. Still other patients voluntarily refused to eat or drink or to accept artificial nutrition and hydration. (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)

For centuries the question of the origin of life had focused on the question of the spontaneous generation of life, at least primitive forms of life, from inanimate matter, an idea that had been promoted most prominently by Aristotle. The widespread belief in spontaneous generation, which had been adopted by the Church, too, was finally abandoned at the beginning of the twentieth century, when the question of the origin of life became related to that of the (...) artificial generation of life in the laboratory. This paper examines the role of social authorities, researchers’ basic beliefs, crucial experiments, and scientific advance in the controversies about spontaneous generation from the seventeenth to the nineteenth centuries and analyzes the subsequent debates about the synthesis of artificial life in the changing scientific contexts of the nineteenth and early-twentieth centuries. It shows that despite the importance of social authorities, basic beliefs, and crucial experiments scientific advances, especially those in microbiology, were the single most important factor in the stepwise abandoning of the doctrine of spontaneous generation. Research on the origin of life and the artificial synthesis of life became scientifically addressed only when it got rid of the idea of constant smooth transitions between inanimate matter and life and explored possible chemical and physical mechanisms of the specificity of basic molecules and processes of life. (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)

Introduction Families of patients with dementia may need support in difficult end-of-life decision making. Such guidance may be culturally sensitive. Methods To support families in Canada, a booklet was developed to aid decision making on palliative care issues. For reasons of cost effectiveness and promising effects, we prepared for its implementation in Italy, the Netherlands and Japan. Local teams translated and adapted the booklet to local ethical, legal and medical standards where needed, retaining guidance on palliative care. Using qualitative (...) content analyses, we grouped and compared adaptations to understand culturally sensitive aspects. Results Three themes emerged: (1) relationships among patient, physician and other professionals—the authority of the physician was more explicit in adapted versions; (2) patient rights and family position—adding detail about local regulations; and (3) typology of treatments and decisions. Considerations underlying palliative care decisions were detailed (Dutch and Italian versions), and the Japanese version frequently referred to professional and legal standards, and life-prolongation was a competing goal. Text on artificial feeding or fluids and euthanasia was revised extensively. Conclusions Providing artificial feeding and fluids and discussing euthanasia may be particularly sensitive topics, and guidance on these subjects needs careful consideration of ethical aspects and possible adaptations to local standards and practice. The findings may promote cross-national debate on sensitive, core issues regarding end-of-life care in dementia. (shrink)

End-of-life issues have become an urgent problem in Japan, where people are among the longest lived in the world and most of them die while connected to high-technology medical equipment. This study examines a sensitive end-of-life ethical issue that concerns patients, families and nurses: the withdrawal of artificial food and fluid from terminally ill patients. A sample of 160 Japanese nurses, who completed a questionnaire that included forced-choice and open-ended questions, supported this act under only two specific (...) conditions: if the patient requested it, and if it relieved the patient’s suffering. They considered that the doctor’s orders, the family’s request, or the patient’s advanced age did not ethically justify this act. A small number of people who had recently lost a relative took part in semistructured interviews focusing on their experiences of their terminally ill relatives being given artificial food and fluid. Ethical, social and cultural factors surrounding this issue are discussed. (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)

The High Court ruling that a premature baby should be not be resuscitatedLate in the afternoon of Thursday, 7 October 2004, Mr Justice Hedley ruled in a highly publicised dispute between parents and doctors about the future care of a severely disabled infant.1 With sadness, and some reluctance, the judge held that Charlotte Wyatt should not be subjected to any further invasive or aggressive treatment to prolong her life, despite her parents’ insistence that she be given every chance to (...) survive a little longer. The judgment was limited in scope. The judge did no more than authorise Charlotte’s doctors “in the event of a disagreement between the parents and themselves, not to send the child for artificial ventilation or similar aggressive treatment”.The fate of baby Charlotte attracted massive media coverage. Just a week later another dispute between a mother and her child’s doctors hit the headlines.2 A third dispute about the care of an older child also looks likely to end up in court.3 However, Charlotte’s case is unusual only in that the case was heard in open court and because it attracted such publicity. For at least 23 years,4 the Family Division of the High Court in England has heard a series of cases when parents and professionals have profoundly disagreed about how best to treat, or not to treat, a very sick baby. As happened in Charlotte’s case, the courts have usually,5 in the end, endorsed the professionals’ judgment about the best interests of the infant. The coincidence of three such high profile cases has prompted speculation that parents will …. (shrink)

This article advocates further examination of the role decay aesthetics can play in artificial life (ALife or AL) and art. Opening with the poetics of decay and the shadow that decay taboo has cast in western culture, firstly, we reframe decay as a constructive process of transformation. Secondly, we perform a brief historical survey of early artistic developments in the field of ALife, assessing how these early works addressed decay. We follow with a deeper analysis of contemporary artists (...) through a lens of decay and decomposition, identifying new tendencies of ALife art (deep time simulation, slime intelligence, molecular agents, techno resurrection and ecohybridized computation). Finally, we look to the peripheries of ALife to see how decay is rendered in current technical research and examine these projects with an eye for turbulent production in the form of ‘decaying’ matter. We conclude with a number of open questions on decomposition and decay aesthetics, both within the artistic and technical realms of ALife. (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)

In nearly all aspects of life, humans are crossing lines of no return. Modern science is leading us into vast uncharted territory—far beyond the invention of nuclear weapons or taking us to the moon.Today, in labs all over the world, scientists are performing experiments that threaten to fundamentally alter the practical character and ethical color of our everyday lives. In The End of Life as We Know It, bestselling author Michael Guillen takes a penetrating look at how the (...) scientific community is pushing the boundaries of morality, including: • Scientists who detached the head of a Russian man from his crippled, diseased body, and stitching it onto a healthy new donated body. • Fertility experiments aimed at allowing designer babies to be conceived with the DNA from three or more biological parents. • The unprecedented politicization of science – for example, in the global discussion about climate change that is pitting “deniers” against “alarmists” and inspiring Draconian legislation, censorship, and legal prosecutions. • The integration of Artificial Intelligence into communications and the economy. The End of Life as We Know It takes us into labratories and boardrooms where these troubling advances are taking place and asks the question no scientists seem to be asking: What does this mean for the future of humanity? (shrink)

Objectives To examine the frequency and characteristics of decisions to forgo artificial nutrition and/or hydration at the end of life.Design Postal questionnaire survey regarding end-of-life decisions to physicians certifying a large representative sample of Belgian death certificates in 2007.Setting Flanders, Belgium, 2007.Participants Treating physicians of deceased patients.Results Response rate was 58.4%. A decision to forgo ANH occurred in 6.6% of all deaths . Being female, dying in a care home or hospital and suffering from nervous system diseases (...) or malignancies were the most important patient-related factors positively associated with a decision to forgo ANH. Physicians indicated that the decision to forgo ANH had had some life-shortening effects in 77% of cases. There had been no consultation with the patient in 81%, mostly due to incapacity . The family, colleague physicians and nurses were involved in decision making in 76%, 41% and 62%, respectively.Conclusions A substantial number of deaths are preceded by a decision to forgo ANH in Belgium. These decisions, ethically laden and involving a considerable chance of life shortening, are mostly not preceded by discussion with the patient despite existing patient rights legislation. It is recommended that physicians and patients and their families alike dedicate ample time to the discussion of treatment options and communication about the possibility of forgoing ANH and that this discussion takes place earlier as part of overall end-of-life care planning rather than at the very end of life. (shrink)