Consider a case of a patient receiving life-supporting treatment. With appropriate care the patient could be kept alive for several years. Yet his latest prognosis also indicates that his mental abilities will deteriorate significantly and that ultimately he will become incapable of understanding what happens around and to him. Despite his illness, the patient has been eager to live. However, he finds the prospect that he is now faced with devastating. He undergoes an unconscious process that results in his (...) finding himself with a preference to die. Consequently, he requests his doctor to stop the treatment that she is providing. Other things being equal, standard medical ethics and the legislations of most Western countries allow the doctor to adhere to the patient’s request if it is autonomous. While its origins can be traced back to at least J.S. Mill’s work on women’s rights, unconscious alteration of one’s preferences in light of the options available for one has figured, for example, in recent discussion on female oppression and social choice theory. Yet the topic has not received attention in the debate on voluntary euthanasia. The inattention is unfortunate because the central problem with such adaptation has been taken to be that it undermines personal autonomy. This motivates the main question examined in this chapter, i.e. the problem of whether a request for euthanasia based on an adaptive preference is autonomous. (shrink)

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 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)

Health care systems across the world are unable to afford the best treatment for all patients in all situations. Choices have to be made. One key ethical issue that arises for health authorities is whether the principle of the “rule of rescue” should be adopted or rejected. According to this principle more funding should be available in order to save lives of identifiable, compared with unidentifiable, individuals. Six reasons for giving such priority to identifiable individuals are considered. All are (...) rejected. It is concluded that the principle of the rule of rescue should not be used in determining the allocation of health resources. (shrink)

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the ‘AP‐physician‐family‐relationship’ and the dominant role Chinese families play in medical decision‐making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese writers from (...) Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives ‘weak’ family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re‐interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its ‘parens patriae’ power to defend the defenseless in society and the integrity of the medical profession. (shrink)

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the 'AP-physician-family-relationship' and the dominant role Chinese families play in medical decision-making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese writers from (...) Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives 'weak' family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re-interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its 'parens patriae' power to defend the defenseless in society and the integrity of the medical profession. (shrink)

Disability might be relevant to decisions about life support in intensive care in several ways. It might affect the chance of treatment being successful, or a patient’s life expectancy with treatment. It may affect whether treatment is in a patient’s best interests. However, even if treatment would be of overall benefit it may be unaffordable and consequently unable to be provided. In this paper we will draw on the example of neonatal intensive care, and ask whether (...) or when it is justified to ration life-saving treatment on the basis of disability. We argue that predicted disability is relevant both indirectly and directly to rationing decisions. (shrink)

Coronavirus disease 2019 can lead to respiratory failure. Some patients require extracorporeal membrane oxygenation support. During the current pandemic, health care resources in some cities have been overwhelmed, and doctors have faced complex decisions about resource allocation. We present a case in which a pediatric hospital caring for both children and adults seeks to establish guidelines for the use of extracorporeal membrane oxygenation if there are not enough resources to treat every patient. Experts in critical care, end-of-life care, bioethics, and (...) health policy discuss if age should guide rationing decisions. (shrink)

Objectives—To investigate the factors considered by staff, and the practicalities involved in the decision making process regarding the withdrawal or withholding of potential life-sustaining treatment in a children's hospital. To compare our current practice with that recommended by the Royal College of Paediatrics and Child Health guidelines, published in 1997.Design—A prospective, observational study using self-reported questionnaires.Setting—Tertiary paediatric hospital.Patients and participants—Consecutive patients identified during a six-month period, about whom a formal discussion took place between medical staff, nursing staff and family (...) regarding the withholding or withdrawal of potentially life-sustaining treatments. The primary physician and primary nurse involved in the discussion were identified.Method—Two questionnaires completed independently by the primary physician and nurse.Results—Twenty-two patients were identified . In 20 cases treatment was withdrawn or withheld, in two cases treatment was continued. Nursing staff considered family wishes and family perceptions of patient suffering as significantly more important factors in decision making than medical staff, who considered prognostic factors as most important. In only two cases were the patient's expressed wishes apparently available. In most cases staff considered the patient's best interests were served and the process would not be enhanced by the involvement of an independent ethics committee. The exceptions were those cases in which treatment was continued following disagreement between parties.Conclusions—Our current practice is consistent with that recommended by the RCPCH. The contribution of the patient, provision of staff counselling and general practitioner involvement were identified as areas for improvement. (shrink)

A member of Jehovah’s Witnesses agreed to receive blood when alone, but rejected it once the elders were present. She insisted that the elders should stay, they were allowed to do so, and she bled to death. Was it all right to allow her to have the elders present when she made her final decision? Was it all right to allow her to bleed to death? It was, according to an anti-paternalist principle, which I have earlier defended on purely utilitarian (...) grounds. The thrust of the present argument is that the principle stands even in cases with context-sensitive preferences. However, my utilitarian argument to this effect must now rely on something other than J.S. Mill’s standard presumption that in most cases the individual makes the right choices for herself. A reference to the general trust in the system of healthcare is essential to the utilitarian defense of the anti-paternalistic principle. (shrink)

This CQ department is dedicated to bringing noted bioethicsts together in order to debate some of the most perplexing contemporary bioethics issues. You are encouraged to contact department editor, D. Micah Hester, UAMS/Humanities, 4301 W. Markham St. #646, Little Rock, AR 72205, with any suggestions for debate topics and interlocutors you would like to see published herein.

Health care workers or others may wish to override parental decisions because of their impact on the health or safetySafety of a child or others. Justification of such an action requires two types of principle: an authorityAuthority principle that designates the process for reversal, and anPrincipal, interventionintervention principleIntervention principle that specifies the grounds for reversal. It is generally accepted that states may overruleOverruleparentsParents’ decisions for good cause. I argue that the role of the state is to provide sufficient protection against (...) parental malfeasance. Parental malfeasance can be construed as either exposing a child to harmHarm or as insufficient defense of the child’s interestsChild's interests. I propose a test to determine what sorts of parental decisions might trigger intervention. I also propose constraints on government action to minimize government unfairness in applying the test. I show how this plays out in application. (shrink)

This case raises a number of complex ethical, legal, and practical issues, some of which cannot be resolved by a research ethics consultation. Sam is an adolescent who has end stage manifestations...

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

The COVID-19 pandemic has forced clinicians, policy-makers and the public to wrestle with stark choices about who should receive potentially life-saving interventions such as ventilators, ICU beds and dialysis machines if demand overwhelms capacity. Many allocation schemes face the question of whether to consider age. We offer two underdiscussed arguments for prioritising younger patients in allocation policies, which are grounded in prudence and fairness rather than purely in maximising benefits: prioritising one’s younger self for lifesaving treatments is prudent from an (...) individual perspective, and prioritising younger patients works to narrow health disparities by giving priority to patients at risk of dying earlier in life, who are more likely to be subject to systemic disadvantage. We then identify some confusions in recent arguments against considering age. (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)

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)

In the first wave of the COVID-19 pandemic, healthcare workers in some countries were forced to make distressing triaging decisions about which individual patients should receive potentially life-saving treatment. Much of the ethical discussion prompted by the pandemic has concerned which moral principles should ground our response to these individual triage questions. In this paper we aim to broaden the scope of this discussion by considering the ethics of broader structural allocation decisions raised by the COVID-19 pandemic. More specifically, (...) we consider how nations ought to distribute a scarce life-saving resource across healthcare regions in a public health emergency, particularly in view of regional differences in projected need and existing capacity. We call this the regional triage question. Using the case study of ventilators in the COVID-19 pandemic, we show how the moral frameworks that we might adopt in response to individual triage decisions do not translate straightforwardly to this regional-level triage question. Having outlined what we take to be a plausible egalitarian approach to the regional triage question, we go on to propose a novel way of operationalising the ‘save the most lives’ principle in this context. We claim that the latter principle ought to take some precedence in the regional triage question, but also note important limitations to the extent of the influence that it should have in regional allocation decisions. (shrink)

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

Some argue that it is ethically justifiable to unilaterally withdraw life‐sustaining treatment during crisis standards of care without the patient's consent in order to reallocate it to another patient with a better chance of survival. This justification has been supported by two lines of argument: the equivalence thesis and the rule of the double effect. We argue that there are theoretical issues with the first and practical ones with the second, as supported by an experiment aimed at exploring whether (...) the Knobe effect, which affects the folk concept of intention, applies to situations of unilateral withdrawal. Fifty‐two critical care physicians from one university were asked to ascribe intention in two hypothetical scenarios A and B in which outcomes differ—the patient from whom life‐sustaining treatment is withdrawn dies in scenario A but survives in scenario B—but the intention, to save the other patient regardless of the outcome of the other, is the same. The survey was administered via a web‐based survey and all answers were anonymous. A paired proportion test was used to compare responses to both questions. All 52 surveyed individuals responded in scenario A and 30 (57.7%) ascribed intention when outcomes were unfavorable, whereas 50 responded in scenario B and 8 (16%) ascribed intention when outcomes were favorable, a difference that was statistically significant (p < 0.001). There are theoretical and practical issues with the arguments proposed to justify the unilateral withdrawal of life‐sustaining treatment based on the equivalence thesis and the rule of double effect. (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)

Informed consent, when given by proxy, has limitations: chiefly, it must be made in the interest of the patient. Here we critique the standard approach to parental consent, as present in Canada and the UK. Parents are often asked for consent, but are not given the authority to refuse medically beneficial treatment in many situations. This prompts the question of whether it is possible for someone to consent if they cannot refuse. We present two alternative and philosophically more consistent (...) frameworks for paediatric proxy consent. The first allows meaningful consent (parents may say ‘yes’ or ‘no’ to treatment), provided that parents are medically informed/competent and intend the health and well-being of their child. In the second solution, medical practitioners or the state consent for treatment, with parents only being consulted to help give insight to the child’s circumstances. While we contend that either of these two options is superior to the insincerity of the present paradigm, we suggest that the first solution is preferable. (shrink)

The contemporary physical description of the universe reflects the inanimate world only. Broadening this description by including life may limit the application of well?established physical laws and may find new forces of the universe governing living organizations. This may also require adoption of some new assumptions and methodological principles, such as a broader principle of uncertainty, and recognition of the fact that humans? ability to manifest biofield communication is distributed very unevenly in the population. Based on available body of scientific (...) literature it is suggested that at this time, before the theoretical basis of the biofield is developed, it is important to conduct a broad experimental study of highly psi?gifted individuals in order to accumulate scientific knowledge of humans? ability to interact with matter, i.e., known physical fields and living organisms by intent. One can expect that current studies of organisms? genomes and attempts to utilize stem cells in medicine will call for the recognition of the biofield and its operative control function in organisms. However, developing a from?the?top?down view on the organism by the suggested approach will shorten this process and it deserves appropriate investment of social resources. (shrink)

Bioethicists often present ‘saving lives’ as a goal distinct from, and competing with, that of extending lives by as much as possible. I argue that this usage of the term is misleading, and provides unwarranted rhetorical support for neglecting the magnitudes of the harms and benefits at stake in medical allocation decisions, often to the detriment of the young. Equal concern for all persons requires weighting equal interests equally, but not all individuals have an equal interest in ‘life-saving’ treatment.

In a world of rapid technological advances, the moral issues raised by life and death choices in healthcare remain obscure. _Life and Death in Healthcare Ethics_ provides a concise, thoughtful and extremely accessible guide to these moral issues. Helen Watt examines, using real-life cases, the range of choices taken by healthcare professionals, patients and clients which lead to the shortening of life. The topics looked at include: * euthanasia and withdrawal of treatment * the persistent vegetative state * abortion (...) * IVF and cloning * life-saving treatment of pregnant women Clearly written and insightful, _Life and Death in Healthcare Ethics_ presupposes no prior knowledge of philosophy. It will be of interest to anyone confronting healthcare ethics for the first time, or seeking to develop his or her understanding of some core topics in the field. (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.

Wilkinson’s discussion of the individual and family consent to organ and tissue donation is to be welcomed because it draws attention to the “incoherent hybrid” of the current position.1 I wish to highlight some areas of his discussion and propose that, in a situation of posthumous organ and tissue donation, the cadaver has no individual rights and family rights should under no circumstances automatically outweigh the potential transplant recipients’ right to a life-saving treatment.Transplant immunobiology and clinical transplantation is a (...) revolutionary area of medicine and has saved thousands of lives. In the UK, between 1 April 2004 and 31 March 2005, organs from 752 people who died were used to save or dramatically improve many people’s lives through 2242 transplants.2 In the US, 23 506 transplants were performed between January and October 2005 from 12 084 donors.3 Information from available databases shows that demand for organs, cells and tissues has outstripped the supply. As of 18 January 2006, 6553 people are still waiting for transplants in the UK and there are 90 636 waiting list transplant candidates in the US.2,3 As of 01 January 2006, there are 15 977 people active on the Eurotransplant waiting list.4 It is likely that non-compulsory posthumous donation of organs has resulted in the loss of many thousands, possibly many …. (shrink)

The prelims comprise: Conceptual Issues Arguments concerning AS, E, or TT Doctors and Ending Life Advance Directives Notes References.

Introduction Hundreds of thousands of premature neonates born in low-income countries are implicitly denied treatment each year. Studies from India show that treatment is rationed even for neonates born at 32 gestational age weeks (GAW), and multiple external factors influence treatment decisions. Is withholding of life-saving treatment for children born between 28 and 32 GAW acceptable from an ethical perspective? Method A seven-step impartial ethical analysis, including outcome analysis of four accepted priority criteria: severity of disease, (...) treatment effect, cost effectiveness and evidence for neonates born at 28 and 32 GAW. Results The ethical analysis sketches out two possibilities: (a) It is not ethically permissible to limit treatment to neonates below 32 GAW when assigning high weight to health maximisation and overall health equality. Neonates below 32 GAW score high on severity of disease and efficiency and cost-effectiveness of treatment if one gives full weight to early years of a newborn life. It is in the child's best interest to be treated. (b) It can be considered ethically permissible if high weight is assigned to reducing inequality of welfare and maximising overall welfare and/or not granting full weight to early years of newborns is considered acceptable. From an equity-motivated health and welfare perspective, we would not accept (b), as it relies on accepting the lack of proper welfare policies for the poor and disabled in India. Conclusion Explicit priority processes in India for financing neonatal care are needed. If premature neonates are perceived as worth less than other patient groups, the reasons should be explored among a broad range of stakeholders. (shrink)

Simona Giordano presents the first full philosophical study of ethical issues in the treatment of anorexia and bulimia nervosa. Beginning with a comprehensive analysis of these conditions and an exploration of their complex causes, she then proceeds to address legal and ethical dilemmas such as a patient's refusal of life-saving treatment. Illustrated with many case-studies, Understanding Eating Disorders is an essential tool for anyone working with sufferers of these much misunderstood conditions, and for all those ethicists, lawyers, and (...) medical practitioners engaged with the widely relevant issues they raise. (shrink)

This article explores refusal of medical treatment by adult patients from ethical and legal perspectives. Initially, consequentialist and deontological ethical theory are outlined. The concepts of autonomy, paternalism and competence are described and an overview of Beauchamp and Childress’s principle-based approach to moral reasoning is given. Relevant common law is discussed and the provisions of the Mental Capacity Act 2005 in assessing competence is evaluated. In order to demonstrate the consideration of moral issues in clinical practice, ethical theory is (...) applied to two well-known incidents: the case of Re MB, where doubt over decision-making capacity led to a paternalistic act to override a patient’s choice; and the death of Emma Gough, a situation where respect for autonomy prevailed when healthcare staff acted lawfully in following a patient’s refusal of life-saving treatment. Finally, guidance from regulatory bodies on the roles and responsibilities of health professionals in relation to this topic are considered. (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)

I defend a certain claim about rationing in the context of HIV/AIDS, namely, the 'priority thesis' that the state of a developing country with a high rate of HIV should provide highly active anti-retroviral treatment (HAART) to those who would die without it, even if doing so would require not treating most other life-threatening diseases. More specifically, I defend the priority thesis in a negative way, by refuting two influential and important arguments against it inspired by the Kantian principle (...) of respect for persons. The 'equality argument' more or less maintains that prioritizing treatment for HIV/AIDS would objectionably treat those who suffer from it as more important than those who do not. The 'responsibility argument' says, roughly, that to ration life-saving treatment by prioritizing those with HIV would wrongly fail to hold people responsible for their actions, since most people infected with HIV could have avoided the foreseeable harm of infection. While it appears that a Kantian must think that one of these two arguments is sound, I maintain that, in fact, respect for persons grounds neither the equality nor responsibility argument against prioritizing HAART and hence at least permits doing so. If this negative defence of the priority thesis succeeds, then conceptual space is opened up for the possibility that respect for persons requires prioritizing HAART, which argument I sketch in the conclusion as something to articulate and defend in future work. (shrink)

This paper is an analysis of the limits of family authority to refuse life saving treatment for a family member (in the Chinese medical context). Family consent has long been praised and practiced in many non‐Western cultural settings such as China and Japan. In contrast, the controversy of family refusal remains less examined despite its prevalence in low‐income and middle‐income countries. In this paper, we investigate family refusal in medical emergencies through a combination of legal, empirical and ethical approaches, (...) which is highly relevant to the ongoing discussion about the place of informed consent in non‐Western cultures. We first provide an overview of the Chinese legislation concerning informed consent to show the significance of family values in the context of medical decision‐making and demonstrate the lack of legal support to override family refusal. Next, we present the findings of a vignette question that investigated how 11,771 medical professionals and 2,944 patients in China responded to the family refusal of emergency treatment for an unconscious patient. In our analysis of these results, we employ ethical reasoning to question the legitimacy of family refusal of life‐sustaining emergency treatment for temporarily incompetent patients. Last, we examine some practical obstacles encountered by medical professionals wishing to override family refusal to give context to the discussion. (shrink)

With a global commitment to scaling up AIDS care and treatment in resource-poor settings for some of the most HIV-affected countries in Africa, availability of antiretroviral treatment is no longer the principal obstacle to expanding access to treatment. A shortage of trained healthcare personnel to initiate treatment and manage patients represents a more challenging barrier to offering life-saving treatment to all patients in need. Physician-centered treatment policies accentuate this challenge. Despite evidence that task shifting (...) for nurse-centered AIDS patient care is effective and can alleviate severe physician shortages that currently obstruct treatment scale-up, political commitment and policy action to support task shifting models of care has been slow to absent. In this paper we review the evidence in support of task shifting for AIDS treatment in Africa and argue that continued policy inaction amounts to unwarranted healthcare rationing and as such is ethically untenable. (shrink)

Consensual homicide remains a crime in jurisdictions where active voluntary euthanasia has been legalized. At the same time, both jurisdictions, in which euthanasia is legal and those in which it is not, recognize that all patients (whether severely ill or not) have the right to refuse or withdraw medical treatment (including life-saving treatment). In this paper, I focus on the tensions between these three norms (the permission of active euthanasia, the permission to reject life-saving treatment, and the (...) prohibition of consensual homicide), assuming a justification of euthanasia based on the right to (personal) autonomy. I argue that the best way to provide a coherent account of these norms is to claim that patients have two distinct rights: the right to autonomy and the right to bodily integrity. This solution has some relevant implications for the discussion of the legalization of active euthanasia. (shrink)

This paper criticises the current approach of the courts to the problem of patients who refuse life-saving medical treatment. Recent judicial decisions have indicated that, so long as the patient satisfies the minimal test for capacity outlined in Gillick, the courts will not be concerned with the substantive grounds for the refusal. In particular, a 'rationality requirement' will not be imposed. This paper argues that, whilst this approach may accord with our desire to uphold the autonomy of a patient (...) who refuses treatment on religious grounds, it fails to address the problem of the deluded decision-maker whose refusal is based on wrongheaded reasons (and where talk of autonomy is a disservice). The difficulty can be overcome, however, by recognising that the two patients in fact inhabit at distinct realms-the non-rational and the irrational. The test for capacity, at least in the context of life-saving treatment, should revert accordingly to the older concept of 'sound mind', to disallow refusals of an irrational (as opposed to a non-rational) nature. (shrink)

In this essay it will be argued that if preferential treatment for individuals who have suffered from past discrimination is permissible in any context, it should be extended to the allocation of scarce medical resources. This contention will be based on two facts: one, that health care, in particular certain life-saving operations, constitutes a scarce social good similar to but more important than other social goods such as desirable jobs and positions in desirable professional schools; secondly, that a claim (...) can plausibly be made that the greater incidence of death due to heart disease among blacks is a result of the effect of past discrimination. In addition, an argument to the effect that preferential treatment is indeed permissible will be sketched that is based upon a critique of the decision in the Bakke case. (shrink)

Do terminally ill patients who have exhausted all other available, government-approved treatment options have a constitutional right to experimental treatment that may prolong their lives? On May 2, 2006, a divided panel of the U.S. Court of Appeals for the District of Columbia, in a startling opinion, Abigail Alliance for Better Access to Developmental Drugs v. Von Eschenbach, held “Yes.” The plaintiffs, Abigail Alliance for Better Access to Developmental Drugs and Washington Legal Foundation, sought to enjoin the Food (...) and Drug Administration from refusing to allow the sale of investigational new drugs that had not yet received FDA approval. The terminally ill plaintiffs contended that they quite literally could not wait that long for the drugs. With no other treatment options available, the plaintiffs urged the court to recognize a fundamental, constitutional right to take potentially life-saving or life-prolonging drugs, even though the treatment had not been fully tested through human trials for safety and effectiveness and could not be legally marketed to the public. (shrink)

In intensive care, disputes sometimes arise when patients or surrogates strongly desire treatment, yet health professionals regard it as potentially inappropriate. While professional guidelines confirm that physicians are not always obliged to provide requested treatment, determining when treatment would be inappropriate is extremely challenging. One potential reason for refusing to provide a desired and potentially beneficial treatment is because (within the setting of limited resources) this would harm other patients. Elsewhere in public health systems, cost effectiveness (...) analysis is sometimes used to decide between different priorities for funding. In this paper, we explore whether cost-effectiveness could be used to determine the appropriateness of providing intensive care. We explore a set of treatment thresholds: the probability threshold (a minimum probability of survival for providing treatment), the cost threshold (a maximum cost of treatment), the duration threshold (the maximum duration of intensive care), and the quality threshold (a minimum quality of life). One common objection to cost-effectiveness analysis is that it might lead to rationing of life-saving treatment. The analysis in this paper might be used to inform debate about the implications of applying cost-effectiveness thresholds to clinical decisions around potentially inappropriate treatment. (shrink)

Health professionals faced with refusal of life-saving treatment may wish to override a person's wishes, especially if that person suffers from a mental disorder. Mental illness does not automatically mean a patient is incapable of making decisions of this nature. It is not always clear whether an individual is legally competent to decide whether to undergo treatment or not. This article discusses a clinical example and analyses some of the moral implications.

Attempts to solve the Trolley Problem by means of a single principle have proved unpersuasive. Nor can the intuition about Transplant be adequately grounded in the hypothetical dissent of rational contractors. It is explained by the initial liability principle, that loss should lie where it falls unless there is sufficient reason to shift it. If we did not think we should accept misfortune in such cases and thought that minimising loss of life was sufficient reason to shift the loss we (...) should not be according others the minimum respect and treatment we feel is their due. The intuition about Trolley is explained by the affinity of that case to the pure case where the choice is between saving many and saving fewer, where minimising misfortune is the only credible option. But these considerations are not yet enough to accommodate the cases that lie between the extremes of Trolley and Transplant. We can handle the intermediate cases by attempting to assimilate them to one or other paradigm and to one another with a sensitivity to morally relevant and irrelevant differences that seeks initially to be faithful to the values reflected by our moral intuitions. Those intuitive judgements are unlikely to survive such an examination wholly unmodified. (shrink)

Numerous state laws and the federal Genetic Information Nondiscrimination Act (GINA) have been enacted to prevent or redress genetic discrimination in employment and health insurance, but laws protecting against genetic discrimination in life insurance have been less common and weak. Consequently, some individuals with a genetic risk of a serious illness have declined presymptomatic genetic testing, thereby decreasing their prevention and treatment options and increasing their mortality risk. In 2020, Florida became the first state to prohibit life insurance companies (...) from using the results of presymptomatic genetic tests in underwriting. Although the law was “only” intended to prevent genetic discrimination, a possible or even likely consequence of the law will be to encourage timely genetic testing by at‐rick individuals and thereby save lives. (shrink)

Abstract:This symposium includes thirteen personal narratives from people who have received at least one organ transplant from a living or deceased donor. These narratives foster better understanding of the experiences of life-saving organ recipients and their families, including post-transplant difficulties experienced—sometimes requiring multiple transplants. This issue also includes three commentaries by Macey L. Levan, Heather Lannon, and Vidya Fleetwood, Roslyn B. Mannon & Krista L. Lentine. Dr. Levan is a living kidney donor and associate professor of surgery and population health. (...) She writes and teaches on organ transplant and has expertise and experience in governance at the federal level as a member of the board of directors for the U.S. Organ Procurement and Transplantation Network. Dr. Lannon is a social worker and transplant advocate. Her work and interest in the topic were inspired by her husband who needed a heart transplant. Dr. Fleetwood is a surgeon specializing in liver transplantation, pancreas transplantation, kidney transplantation, as well as living donor nephrectomy. Dr. Mannon is a nephrologist and professor of medicine, pathology and microbiology. Her work focuses on understanding and improving long-term kidney transplant outcomes for patients, donors, and caregivers. Dr. Lentine is a nephrologist specializing in treatment of adult patients with kidney disease. She is a researcher and co-chaired the international work group that developed guidelines for living donor kidney transplantation. (shrink)

English law gives the competent patient the right to refuse life-saving medical treatment, either contemporaneously or in an advance directive, and a physician commits a battery when treating a patient who validly refused treatment. However, with regard to the details of a physician's liability, many questions remain unanswered, and it is not at all clear under what circumstances a patient's tort action for unwanted life-saving treatment will succeed, and what remedies would be available to the patient. The (...) article suggests that a physician should be liable in battery for administering life-saving treatment, even if he/she had doubts about the validity of the patient's treatment refusal, unless a defence of reasonable mistake can be established. Furthermore, in case of a battery which resulted in keeping the patient alive, the patient should not only be able to claim nominal damages, but general and special damages, including mental and physical pain and suffering caused by the prolongation of the patient's life, should equally be available. (shrink)

The current ethical-legal consensus — prohibiting assisted suicide and euthanasia, but (1) allowing patients to forgo all life-saving treatment, and (2) permitting pain relief that increases the risk of death — is a means of having it both ways. This is how we often make “tragic choices.”.