The neonatal nurse forges a unique partnership with parents of a critically ill infant who are often, unexpectedly, exposed to the bewildering and complex environment that is neonatal intensive care, helping navigate them through this unchartered territory. Our role is multifaceted, with the primary focus of providing care in the best interests of our patients.1 This is realised through the provision of high-quality evidence-based care, advocating for the needs of the baby and family, and when required acting (...) as a linchpin bridging communication channels between medical and nursing teams, other allied health professionals, and the family.1 2 Ordinarily, the birth of an extremely preterm infant is a distressing, life-changing event for parents; this is further complicated by a number of additional factors in this complex scenario3. (shrink)

In this commentary on a clinical ethics case pertaining to a same-sex couple that does not have explicit surrogate decision-making or hospital-visitation rights (in the face of objections from the family-of-origin of one of the queer partners), the authors invoke contemporary legal and policy standards on LGBTQ health care in the United States and abroad. Given this historical moment in which some clinical rights are guaranteed for LGBTQ families whilst others are in transition, the authors (...) advocate for the implementation of clinical ethics mediation as the soundest and most humane form of resolution in matters where there is a dispute between family members about an incapacitated loved one. They argue that clinical ethics mediation is an ideal alternative solution because it works toward consensus about outcome, even where consensus about values is not achievable. (shrink)

German legislation demands that decisions about the treatment of mentally incompetent patients require an ‘informed consent’. If this was not given by the patient him-/herself before he/she became incompetent, it has to be sought by the physician from a guardian, who has to be formally legitimized before. Additionally this surrogate has to seek the permission of a Court of Guardianship (Vormundschaftsgericht), if he/she intends to consent to interventions, which pose significant risks to the health or the life of (...) the person under his/her care. This includes ‘end-of-life decisions’. Deviations from this procedure are only allowed in acute emergencies or cases of ‘medical futility’. On the basis of epidemiological and demographical data it can be shown that the vast majority of surrogate decisions on incompetent patients in Germany is not covered by legally valid consent. Moreover, the data suggests that if consent were to be requested according to the legal regulations, both the legal and medical system could realistically never cope with the practical consequences of this. Additionally, empiric research has revealed serious deficits concerning medical ‘end of life-decisions’ and practical performance in palliative care. As a consequence a multidisciplinary discussion has developed in Germany about the reform of present legislation with respect to key-issues like• the assessment of mental competence• the options for exercising patient self-determination via advance directives and durable powers of attorney• the improvement of palliative care facilities,• the clarification of formal procedures for surrogate decision-making in health care and towards the end of life• and the possibilities and their limitations of controlling these decision-making processes ‘externally’ (e.g., by Guardianship Courts or committees).The authors discuss those proposals, which clearly dominate the present debate: They all aim to comply with the scientific basis of German law, jurisdiction and the European traditions of philosophy of health care and bioethics. (shrink)

Decision making is a crucial element in the field of medicine. The physician has to determine what is wrong with the patient and recommend treatment, while the patient has to decide whether or not to seek medical care, and go along with the treatment recommended by the physician. Health policy makers and health insurers have to decide what to promote, what to discourage, and what to pay for. Together, these decisions determine the quality of (...) class='Hi'>health care that is provided. Decision Making in Health Care is an up-to-date, comprehensive overview of the field of medical decision making. It includes quantitative theoretical tools for modeling decisions, psychological research on how decisions are actually made, and applied research on how physician and patient decision making can be improved. (shrink)

Unrepresented patients are individuals who lack decision makingcapacity and have no family or friends to make medical decisions for them. This population is growing in number in the United States, particularly within emergency and intensive care settings. While some bioethical discussion has taken place in response to the question of who ought to make decisions for these patients, the issue of how surrogate medical decisions ought to be made for this population remains unexplored. In this paper, we (...) argue that standard applications of surrogate decision making principles in health care are not well suited to many unrepresented patients with long-term mental health diagnosis. We argue that when applied to this population, the substituted judgment standard, designed to preserve patient preferences and values, may lead to the exclusion of their preferences. We argue further that the application of the best interest standard runs the risk of leading to harmful cases of overtreatment or undertreatment. We offer an alternative interpretation of the best interest principle that is better able to promote the well-being of unrepresented patients, especially for those who lack capacity because of mental disorders. This alternative is based on the practices and principles of harm reduction and includes three components: emphasis on considering the expressed preferences of unrepresented patients, a focus on reducing harm as well as the delivery of clinical benefits, and a recognition of the importance of promoting trust. (shrink)

This is a new edition of a classic textbook in health care ethics, one that offers an alternative to the principle-based approach from Beauchamp and Childress (Principles of Biomedical Ethics, now in its seventh edition from OUP) and traditional Catholic approaches of Ashley and O'Rourke. In the early chapters Devettere spells out the meaning of ethics and the importance of prudential reasoning in seeking the good life. The rest of the book deals with issues and cases, including determinations (...) of life and death, reproduction and research and genetics, and the distribution of health care. In this fourth edition Devettere updates all chapters and adds new cases and new sections on the following: neuroscience, social psychology, overriding advance directives, studies on the fetus, the palliative care movement, cardiopulmonary resuscitation, pharmacists and reproductive issues, prenatal life and abortion, neonatal testing and mandatory vaccinations, the US governments' STD research in Guatemala, the emergence of biobanks, facial transplantations, genetic testing, legal issues around the Affordable Care Act, and more. This is an accessible and comprehensive textbook covering all aspects of the field. (shrink)

The rise in the recent Western pattern of surrogate decision making is not a necessary result of an increase in the number of elderly with decreased competence; it may rather manifest the dominant Western vision of human life and relations. From a comparative philosophical standpoint, the Western pattern of medical decision making is individualistic, while the Chinese is familistic. These two distinct patterns may reflect two different comprehensive perspectives on human life and relations, disclosing a (...) foundational difference that can be seen in the Aristotelian account of friendship and the Confucian account of humanity. The contemporary development of surrogate decision making in the West may illustrate a general tendency toward the Aristotelian account, while the Chinese approaches are congruent with the Confucian view. Also explored are some merits of the Chinese approach to family decision making for health care. (shrink)

The substituted judgement principle is often recommended as a means of promoting the self-determination of an incompetent individual when proxy decision makers are faced with having to make decisions about health care. This article represents a critical ethical analysis of this decision-making principle and describes practical impediments that serve to undermine its fundamental purpose. These impediments predominantly stem from the informality associated with the application of the substituted judgement principle. It is recommended that the principles (...) upon which decisions are made about health care for another person should be transparent to all those involved in the process. Furthermore, the substituted judgement principle requires greater rigour in its practical application than currently tends to be the case. It may be that this principle should be subsumed as a component of advance directives in order that it fulfils its aim of serving to respect the self-determination of incompetent individuals. (shrink)

This essay explores the preferences, anticipations and expectations of the elderly regarding the role of family members in making health care decisions for them should they become decisionally incapacitated. Findings are presented from a series of in-depth interviews of men and women aged 67–91 years. Following a discussion of the uncertain legal status of familial surrogate decision-making, we argue that the family unit's autonomy is sufficient to justify the elderly's preferred reliance on their own (...) family. Further, we suggest that social and legal policy changes should facilitate, rather than impede, familial decision-making. (shrink)

This book is the most comprehensive treatment available of one of the most urgent - and yet in some respects most neglected - problems in bioethics: decision-making for incompetents. Part I develops a general theory for making treatment and care decisions for patients who are not competent to decide for themselves. It provides an in-depth analysis of competence, articulates and defends a coherent set of principles to specify suitable surrogate decisionmakers and to guide their choices, (...) examines the value of advance directives, and investigates the role that considerations of cost ought to play in decisions concerning incompetents. Part II applies this theoretical framework to the distinctive problems of three important classes of individuals, many of whom are incompetent: minors, the elderly and psychiatric patients. The authors' approach combines a probing analysis of fundamental issues in ethical theory with a sensitive awareness of the concrete realities of health care institutions and the highly personal and individual character of difficult practical problems. Its broad scope will appeal to health professionals, moral philosophers and lawyers alike. (shrink)

Daniel Brudney's clear-headed analysis, in this issue of the Hastings Center Report, of the difference between a patient's and a surrogate's right to make medical treatment decisions contributes to a longstanding conversation in bioethics. Brudney offers an epistemological and a moral argument for the patient's and the surrogate's right to decide. The epistemological argument is the same for both parties: the patient has a right to decide because she is presumed to know her own interests better than anyone (...) else, and the surrogate is entitled to make decisions because she knows the patient better than anyone else. However, argues Brudney, the moral arguments are not parallel. The patient's moral right to decide for herself is an exercise of autonomy, but the only ground for the responsibility held by the surrogate, says Brudney, is that she knows the patient better than the health care professionals do. If in fact that's not the case, then she forfeits her right to be the patient's surrogate. For all the clarity and force of his argument, I think Brudney may be barking up the wrong tree. In cases of proxy decision-making, it's intimacy, not knowledge, that does the heavy moral lifting. (shrink)

I review the recent case of Edna Folz, a 73 year-old woman who was suffering through the end stages of very advanced Alzheimer's dementia when her case was adjudicated by the Wisconsin Supreme Court. I consider this case as an example of how courts are increasingly misinterpreting the ethical and legal decision-making standards known as substituted judgment and best interests and thereby threatening individuals' treatment decision-making rights as developed by other courts over the past two decades (...) and creating serious roadblocks to health-care providers' ability to render appropriate patient care. The Wisconsin Supreme Court held that Edna's legal guardian could not authorize withdrawal of Edna's treatment, ruling that as a matter of law, if an incompetent person is not in a persistent vegetative state, it is not in his or her best interests for life-sustaining treatment to be withdrawn unless (s)he has executed an advance directive or other statement clearly indicating his or her desires. (shrink)

The computer revolution has had an enormous effect on all aspects of the practice of medicine, yet little thought has been given to the role of social media in identifying treatment choices for incompetent patients. We are currently living in the ?Internet age? and many people have integrated social media into all aspects of their lives. As use becomes more prevalent, and as users age, social media are more likely to be viewed as a source of information regarding medical (...) class='Hi'>care preferences. This article explores the ethical and legal issues raised by the use of social media in surrogate decision making. (shrink)

My topic is a problem with our practice of surrogate decision-making in health care, namely, the problem of the surrogate who is not doing her job—the surrogate who cannot be reached or the surrogate who seems to refuse to understand or to be unable to understand the clinical situation. The analysis raises a question about the surrogate who simply disagrees with the medical team. One might think that such a surrogate (...) is doing her job—the team just doesn't like how she is doing it. My analysis raises the question of whether she should be overridden. In approaching this problem, I focus not on the range of difficulties in practice but on the underlying moral conceptual issue. My concern will be to show that the moral values that underpin patient decision-making are fundamentally different from those that underpin surrogate decision-making. Identifying the distinctions will set parameters for any successful solution to the “Who should decide?” question. A patient has a specific kind of moral right to make her own medical decisions. A surrogate has no analogous moral right to decide for someone else. We want the surrogate to make the decision because we believe that she has a relevant epistemological advantage over anyone else on the scene. If and when she has no such advantage or if she refuses or is unable to use it, then there might not be sufficient reason to let her be the decision-maker. (shrink)

My colleagues and I in Birmingham are always on the lookout for an undergraduate textbook for our medical students, which was why I agreed to review this book. By and large it is pitched at an undergraduate audience and covers many of the areas that one might expect to find in a UK undergraduate medical course (consent, making decisions for the incompetent, end-of-life issues, beginning-of-life issues, research, transplantation and medical genetics). It also has a chapter on managed care, (...) which is less relevant to a UK audience but is interesting none the less. (The case study for the chapter on James Adams who, it is alleged, lost both his hands and feet as a …. (shrink)

Care of the critically ill newborn includes support for the birth mother/parents with regular updates around the clinical condition of the baby, and involvement in discussions around complex decision-making issues. Discussions around continuation or discontinuation of life-sustaining are challenging even in the most straightforward of cases, but what happens when the birth mother is critically unwell? Such cases can lead to uncertainty around who should assume the parental role for these difficult discussions. In this round table discussion, (...) we explore the ethical, moral and legal uncertainties raised by coincident severe maternal and neonatal illness in the context of surrogacy. (shrink)

The case states that a male same-sex couple entered into a surrogacy arrangement with an unrelated surrogate using donor sperm and the surrogate’s eggs. M is the legal mother pursuant to s33 of the Human Fertilisation and Embryology Act 2008. Though the facts tell us that there was no legally binding arrangement, this is in fact the position of the law: under s1A Surrogacy Arrangements Act, no surrogacy arrangements can ever be binding on the parties. It is not (...) clear whether the donor sperm is from one of the same-sex couple or not. If it was donor sperm and not from either intended father, this is not an arrangement that would be recognised in law, as one of the men must be genetically related to the child in order for them to obtain legal parenthood via a parental order, under s54 HFEA 2008. They could apply to adopt the child, although they may fall foul of adoption legislation1 if any money has moved between them and M and they do not fall within an exemption.2 In any event, an adoption cannot be achieved in time for them to obtain legal parenthood in a crisis situation. In the absence of a biological connection and the resulting legal parenthood, in order to obtain parental responsibility for the child to allow them to make decisions about Baby T’s care, the men would need to apply for leave to apply for a child arrangements order pursuant to s10 Children Act 1989. However, in the …. (shrink)

The aim of this study was to investigate factors associated with seriously ill patients’ preferences for their family and physicians making resuscitation decisions on their behalf. Using SUPPORT II data, the study revealed that, among 362 seriously ill patients who were experiencing pain, 277 (77%) answered that they would want their family and physicians to make resuscitation decisions for them instead of their own wishes being followed if they were to lose decision-making capacity. Even after controlling for (...) other variables, patients who preferred the option of undergoing cardiopulmonary resuscitation (CPR) in the future were twice as likely, and those who had had ventilator treatment were four-fifths less likely, to rely on their family and physicians than those who did not want CPR (odds ratio (OR)-2.28; 95% confidence interval (CI) 1.18-4.38) or those who had not received ventilator treatment (OR-0.23; 95% CI 0.06-0.90). Psychological variables (anxiety, quality of life, and depression), symptomatic variables (severity of pain and activities of daily living) and the existence of surrogates were not significantly associated with patients’ preferences for having their family and physicians make resuscitation decisions for them. Age was not a significant factor for predicting the decision-making role after controlling for other variables. (shrink)

The central claim of this paper is that American states’ use of so-called “triggering conditions” to regulate surrogate decision-making authority in end-of-life care leaves unresolved a number of important ethical and legal considerations regarding the scope of that authority. The paper frames the issue with a case set in a jurisdiction in which surrogate authority to withdraw life-sustaining treatment is triggered by two specific clinical conditions. The case presents a quandary insofar as the clinical facts (...) do not satisfy the triggering conditions, and yet both the appropriate surrogates and the care team agree that withdrawal of life-sustaining treatment is in the best interest of the patient. The paper surveys applicable law across the 50 states and weighs the arguments for and against the inclusion of such triggering conditions in relevant legal regimes. The paper concludes by assessing the various legal and policy options states have for regulating surrogate decision-making authority in light of the moral considerations, and notes the possibility for conflict within ethics teams arising from the potential tension between prudence, risk-aversion, and moral obligation. (shrink)

As clinicians, this case1 raises both personal and professional challenges. A key issue is who carries legal parental responsibility for the difficult decisions that may be required around life-sustaining care in baby T. Medicolegally, we understand that the surrogate mother holds legal parental responsibility for baby T until this can be transferred to the intended parents.2 But this process can take many months to complete, after the birth of baby. As M is now critically ill and unable to (...) engage in any discussion around the care of her baby, who becomes the legal guardian of the baby, for complex decision making that involves either reorientation of care away from intensive care with the inevitable consequence of death in this extremely premature baby, or continuing this life-sustaining treatment with a high likelihood for major neonatal morbidity and longer term disability? Does it pass onto one of the IPs as the genetic father, or does this responsibility fall on the neonatal consultant managing the baby in intensive care? And if an antenatal surrogacy agreement had existed, is it legally binding for inclusion of the IPs perspectives in the decision-making, especially if our medical decision making turns out to be at discord with the beliefs and wishes of the IPs for baby T? Box 1 ### Current surrogacy proceedings in the UK.2 6–8 The Law Commission UK5 is currently reviewing the decision on whether legal parenthood to intended parents can be effected immediately at the time of birth of the baby. Parental orders. (shrink)

In this companion volume to their 1981 work, A Philosophical Basis of Medical Practice, Pellegrino and Thomasma examine the principle of beneficence and its role in the practice of medicine. Their analysis, which is grounded in a thorough-going philosophy of medicine, addresses a wide array of practical and ethical concerns that are a part of health care decision-making today. Among these issues are the withdrawing and withholding of nutrition and hydration, competency assessment, the requirements for valid (...) surrogate decision-making, quality-of-life determinations, the allocation of scarce health care resources, medical gatekeeping, and for-profit medicine. The authors argue for the restoration of beneficence to its place as the fundamental principle of medical ethics. They maintain that to be guided by beneficence a physician must perform a right and good healing action which is consonant with the individual patient 's values. In order to act in the patient 's best interests, or the patient 's good, the physician and patient must discern what that good is. This knowledge is gained only through a process of dialogue between patient and/or family and physician which respects and honors the patient 's autonomous self-understanding and choice in the matter of treatment options. This emphasis on a dialogical discernment of the patient 's good rejects the assumption long held in medicine that what is considered to be the medical good is necessarily the good for this patient. In viewing autonomy as a necessary condition of beneficence, the authors move beyond a trend in the medical ethics literature which identifies beneficence with paternalism. In their analysis of beneficence, the authors reject the current emphasis on rights- and duty-based ethical systems in favor of a virtue-based theory which is grounded in the physician- patient relationship. This book's provocative contributions to medical ethics will be of great interest not only to physicians and other health professionals, but also to ethicists, students, patients, families, and all others concerned with the relationship of professional to patient and patient to professional in health care today. (shrink)

The purpose of this overview of published articles on decision making in paediatric care was to identify important aspects of its possible use in clinical practice and to obtain a base for future research. A literature review was undertaken utilizing snowball sampling to identify articles because of the diversity present within the area of decision making in paediatric care. The databases PubMed and CINAHL were used. The search was limited to articles published in English (...) during the period 1994-2004. The analysis entailed a series of comparisons across articles, focusing on major areas of enquiry and patterns of results. Various levels of decision making are described because these seem to form a basis for how decisions are made. Concepts found to be of importance for decision making are described under the following headings: competence, the child’s best interests, knowledge, values and attitudes, roles and partnership, power, and economy. Further research is suggested. (shrink)

Shared decision-making involves health professionals and patients/clients working together to achieve true person-centred health care. However, this goal is infrequently realized, and most barriers are unknown. Discussion between philosophers, clinicians, and researchers can assist in confronting the epistemic and moral basis of health care, with benefits to all. The aim of this paper is to describe what shared decision-making is, discuss its necessary conditions, and develop a definition that can be used (...) in practice to support excellence in maternity care. Discussion between the authors, with backgrounds in philosophy, clinical maternity care, health care management, and maternity care research, assisted the team to confront established norms in maternity care and challenge the epistemic and moral basis of decision-making for caesarean section. The team concluded that shared decision-making must start in pregnancy and continue throughout labour and birth, with equality in discourse facilitated by the clinician. Clinicians have a duty of care for the adequacy of women's knowledge, which can only be fulfilled when relevant knowledge is offered freely and when personal beliefs and biases that may impinge on decision-making (defeaters) are disclosed. Informed consent is not shared decision-making. Key barriers include existing cultural norms of “the doctor knows best” and “patient acquiescence” that prevent defeaters being acknowledged and discussed and can lead to legal challenges, overuse of medical intervention and, in some areas, obstetric violence. Shared decision-making in maternity care can thus be defined as an enquiry by clinician and expectant woman aimed at deciding upon a course of care or none, which takes the form of a dialogue within which the clinician fulfils their duty of care to the client's knowledge by making available their complete knowledge (based on all types of evidence) and expertise, including an exposition of any relevant and recognized potential defeaters. Research to develop measurement tools is required. (shrink)

The purpose of this study was to identify how older Korean people seek information and their desire to participate in decision making about their health care. A total of 165 elderly people living in Seoul, South Korea, participated in the study. Data were collected during individual interviews using the Autonomy Preference Index. The mean information-seeking score was high. The mean score for their desire to participate with a physician in decision making was lower, but (...) this was higher when family members were involved. The study indicates that many older people want to receive information about their health care. Families (or guardians), as well as older people themselves, should be included in the decision-making process. Nurses can encourage older people to express their wishes, while treating each individual with respect. (shrink)

In October 1993, a survey of health care agency administrators was undertaken shortly after they had experienced two sudden reductions in public funding. The purpose of this investigation was to gain insight into the role of ethics in health administrator decision making. A mail questionnaire was designed for this purpose. Descriptive statistics and content analysis were used to summarize the data. Staff reductions and bed closures were the two most frequently reported mechanisms for addressing the (...) funding reductions. Most administrators did not believe that these changes would have a negative public impact. In contrast, the majority indicated that future changes in reaction to additional funding reductions would have a negative public impact. Approximately one-third of the administrators reported ethics to be an element of recent administrative decision making, and one-half could foresee that ethics would be important in the future if reductions continued. These findings are discussed in relation to ethics. Issues for additional research are outlined. (shrink)

BackgroundIn the coming years, surrogate decision-making is expected to become highly prevalent in Japanese clinical practice. Further, there has been a recent increase in activities promoting advance care planning, which potentially affects the manner in which judgements are made by surrogate decision-makers. This study aims to clarify the grounds on which surrogate decision-makers in Japan base their judgements.MethodsIn this qualitative study, semi-structured interviews were conducted to examine the judgement grounds in surrogate (...) decision-making for critical life-sustaining treatment choices in acute care hospitals.ResultsA total of 228 participants satisfied the inclusion criteria, and 15 were selected for interviews. We qualitatively analysed the content of 14 interview transcripts, excluding one that did not meet the inclusion criteria. Based on this analysis, we extracted 4 core categories, 17 categories, 35 subcategories, and 55 codes regarding judgement grounds in surrogate decision-making. The four core categories were as follows: patient preference-oriented factor (Type 1), patient interest-oriented factor (Type 2), family preference-oriented factor (Type 3), and balanced patient/family preference-oriented factor (Type 4). The Type 4 core category represented attempts to balance the preferences of the patient with those of the surrogate decision-maker.ConclusionsSurrogate decision-makers based their decisions on important aspects related to a patient’s life, and they considered not only the patient’s preferences and best interests but also their own preferences. As the need for surrogate decisions will increase in the future, decision-makers will need to consider judgement grounds from a more diverse perspective. (shrink)

The central claim of this paper is that American states’ use of so-called “triggering conditions” to regulate surrogate decision-making authority in end-of-life care leaves unresolved a number of important ethical and legal considerations regarding the scope of that authority. The paper frames the issue with a case set in a jurisdiction in which surrogate authority to withdraw life-sustaining treatment is triggered by two specific clinical conditions. The case presents a quandary insofar as the clinical facts (...) do not satisfy the triggering conditions, and yet both the appropriate surrogates and the care team agree that withdrawal of life-sustaining treatment is in the best interest of the patient. The paper surveys applicable law across the 50 states and weighs the arguments for and against the inclusion of such triggering conditions in relevant legal regimes. The paper concludes by assessing the various legal and policy options states have for regulating surrogate decision-making authority in light of the moral considerations, and notes the possibility for conflict within ethics teams arising from the potential tension between prudence, risk-aversion, and moral obligation. (shrink)

Most countries appear to believe that their health system is in a state of semi-crisis with expenditures rising rapidly, with the benefits of many services unknown and with pressure from the public to ensure access to a comprehensive range of services. But whose values should inform decision-making in the health area, and should the influence of different groups vary with the level of decision-making? These questions were put to 54 members of the public and (...) health professionals in eight focus groups. Adopting a different perspective from other studies, participants were not asked if particular groups should be involved in decisions but rather through deliberation and discussion nominated their own potential decision makers. This delivered a clear message that participants saw a legitimate role for a broad range of stakeholders in priority-setting decisions so as to incorporate a diversity of expertise and opinion. Companion themes were the acknowledgment that decisions involve ethical judgments and are not purely technical, that the power of special interest groups (such as clinicians) should be kept in check, and that the process by which decisions are reached is important. The results suggest that qualitative methods of investigation have the potential to improve the legitimacy of policy decisions by contributing to a better understanding of the values of the public and health professionals, and by expanding the range of options available for further research. (shrink)

BackgroundInstances of surrogate decision-making are expected to increase with the rise in hospitalised older adults in Japan. Few large-scale studies have comprehensively examined the entire surrogate decision-making process. This study aimed to gather information to assess the current state of surrogate decision-making in Japan.MethodsA cross-sectional survey was conducted using online questionnaires. A total of 1000 surrogate decision-makers responded to the questionnaire. We examined the characteristics of surrogate decision-makers (...) and patients, content of surrogate decision-making meeting regarding life-sustaining treatment between the doctors and surrogate decision-makers, extent of involvement of the various parties in the surrogate decision-making process, judgement grounds for surrogate decision-making, and frequency of involvement in the surrogate decision-making process.ResultsOf the participants, 70.5% were male and 48.3% were eldest sons. Only 7.6% of the patients had left a written record of their preferences and 48.8% of the surrogates reported no knowledge of the patient having expressed their prior intentions regarding medical care in any form. Respondents indicated that their family meetings with healthcare professionals mostly included the information recommended by guidelines in a surrogate decision-making meeting in Japan. Most participants reported a good understanding of the meeting content. Although many participants based their decisions on multiple grounds, surrogates’ considerations may not adequately reflect respect for patient autonomy in Japan. Specifically, the eldest son considered his own preference more frequently than that of the other surrogate decision-makers. In 26.1% of the cases, either zero or one family meeting with healthcare professionals was held. In these cases, significantly fewer decisions involved the participation of healthcare professionals other than the doctor compared to cases with multiple meetings.ConclusionsSurrogate decisions in Japan are most commonly made by eldest sons and may not frequently consider the perspectives of other surrogates. The finding that patient preferences were rarely known suggests a role for increased advance care planning. (shrink)

Although people who endorse conspiracy theories related to medicine often have negative attitudes toward particular health care measures and may even shun the healthcare system in general, conspiracy theories have received rather meager attention in bioethics literature. Consequently, and given that conspiracy theorizing appears rather prevalent, it has been maintained that there is significant need for bioethics debate over how to deal with conspiracy theories. While the proposals have typically focused on the effects that unwarranted conspiracy theories have (...) in the public health context, Nathan Stout's recent argument concentrates on the impacts that such theories have at the individual level of clinical decision‐making. In this article, I maintain that duly acknowledging the impacts of conspiracy theories that raise Stout's concern does not require bioethics debate over the proper response to the influence of conspiracy theories in healthcare. Having evaluated two possible objections, I conclude by briefly clarifying the purported import of the response to Stout. (shrink)

This paper examines a number of questions about the degree to which the clinical practice of medicine is affected, if at all, by the legal systems in four countries: Chile, Germany, Japan and the United States. The focus on these four countries in four different regions of the world offers a unique perspective within which to examine medical treatment decisions made by patients and their proxies or surrogates, the potential role for universal written instruments such as advance directives, the cross-professional (...) tensions between clinical and legal concerns in very distinct cultures, and the degree to which legal activities can change or affect clinical realities in the context of these different political and health care systems. We have incorporated, whenever relevant, the insights of many disciplines, including the social sciences, in analyzing the existing interrelations between law and behavior in this specific context. Der Beitrag untersucht, inwieweit die klinische Praxis in vier Ländern mit unterschiedlichen Rechtssystemen und Berufskulturen durch Rechtsnormen oder das Verständnis von Recht beeinflußt wird. Es wird gefragt, welche Funktion rechtliche Interventionen bei der Veränderung von Verhaltensnormen in unterschiedlichen Gesundheitssystemen haben können. Folgende Themenbereiche werden diskutiert: Entscheidungen über die medizinische Behandlung, die von Patienten und ihren Angehörigen oder Stellvertretern getroffen werden; die mögliche Rolle umfassender schriftlicher Verfügungen wie z.B. der Patiententestamente ; die berufsübergreifenden Spannungen zwischen medizinischen und rechtlichen Belangen in sehr unterschiedlichen Kulturen; der Einfluß, den gesetzgeberische Aktivitäten im Kontext der verschiedenen politischen und Gesundheitssysteme auf die medizinische Wirklichkeit haben. Bei ihrer Analyse der in diesem Zusammenhang bestehenden Beziehungen im Verhältnis von Recht und Verhalten haben die Autoren die Erkenntnisse vieler Disziplinen unter Einschluß der Sozialwissenschaften, soweit sie als relevant erscheinen, in ihren Beitrag eingearbeitet. (shrink)

Our hospital’s policy and procedures for “Patients Without Surrogates” provides for gradated safeguards for managing patients’ treatment and care when they lack decision–making capacity, have no advance directives, and no surrogate decision makers are available. The safeguards increase as clinical decisions become more significant and have greater consequences for the patient. The policy also directs social workers to engage in “rigorous efforts” to search for surrogates who can potentially provide substituted judgments for such patients. We (...) describe and illustrate the policy, procedures, and kinds of expected rigorous efforts through our narration of an actual but disguised case for which we provided clinical ethics guidance and social work expertise. Our experience with and reflection on this case resulted in four recommendations we make for health care facilities and organizations that aim to provide quality care for their own patients without surrogates. (shrink)

: The standard bioethics account is that respecting patient autonomy means ensuring patients make their own decisions. In fact, respecting patient autonomy often has more to do with the overall shape and meaning of patients' health care regimes, and sometimes, at least, patients will very reasonably defer to medical authority.

How shall we decide for others who cannot decide for themselves? And who—or what, in the case of artificial intelligence — should make the decision? The present issue of the journal tackles several interrelated topics, many of them having to do with surrogate decision making. For example, the feature article by Jardas et al 1 explores the potential use of artificial intelligence to predict incapacitated patients’ likely treatment preferences based on their sociodemographic characteristics, raising questions about (...) the means by which we come to decide for others. And a clinical ethics round table led by Wilkinson and Pillay2 examines the case of a premature baby on life support whose primary surrogate is herself incapacitated. Together, these examples force us to think more deeply about the meaning and significance of taken-for-granted concepts: respect for autonomy, substituted judgement, best interests. We’ll consider the baby first and then turn to AI. “Baby T” is a critically ill newborn delivered prematurely by emergency caesarean section. The mother had entered into a surrogacy arrangement with a same-sex male couple, the intended parents, who were to take over the baby’s care after birth—just as soon as a formal parental order could be obtained through the court. Until then, the birth mother, who had used her own eggs to conceive Baby T along with sperm from an unidentified donor, would have legal and ethical responsibility to decide about the baby’s care. Unfortunately, she too was in critical condition, having fallen unconscious prior to delivery due to a sudden brain haemorrhage. She remained unconscious, and thus incapacitated, during a crucial period in which time-sensitive decisions about Baby T’s care needed to be made, including whether to continue life support. Given the mother’s incapacity, who should …. (shrink)

The standard bioethics account is that respecting patient autonomy means ensuring that patients make their own decisions, and that requires that they give informed consent. In fact, respecting autonomy often has more to do with the overall shape and meaning of their health care regimes. Ideally, patients will sometimes take control of their health care but sometimes defer to medical authority. The physician's task is, in part, to inculcate patients into the appropriate good health (...) class='Hi'>care regimes. (shrink)

A couple and their five‐year‐old daughter are in a car accident. The parents are not expected to survive. The child is transported to a children's hospital, and urgent treatment decisions must be made. Whom should the attending physician approach to make decisions for the child? When such cases arise in, for example, the hospitals where we work, the social worker or chaplain is instructed to use the Illinois Health Care Surrogacy Act as a guidepost to identify a (...) class='Hi'>decision‐maker. But in our state and the country overall, the limitations of such statutes leave hospital workers to make a judgment call among friends, family, and clergy who may come forward. While surrogate decision‐making statutes comprehensively address surrogate decision‐makers for adults, a patchwork of laws—permanency statutes, kinship provider statutes, standby guardianship statutes, and, in some cases, surrogate decision‐making statutes—provide variable decision‐making pathways for children. (shrink)