In the Netherlands, current policy opinion emphasizes demand-driven health care. Central to this model is the view, advocated by some Dutch health policy makers, that patients should be encouraged to be aware of and make use of health quality and health outcomes information in making personal health care provider choices. The success of the new health care system in the Netherlands is premised on this being the case. After a literature review and description of the new Dutch health care system, (...) the adequacy of this demand-driven health policy is tested. The data from a July 2005, self-administered questionnaire survey of 409 patients (response rate of 94%) as to how they choose a hospital are presented. Results indicate that most patients did not choose by actively employing available quality and outcome information. They were, rather, referred by their general practitioner. Hospital choice is highly related to the importance a patient attaches to his or her physician’s opinion about a hospital. Some patients indicated that their hospital choice was affected by the reputation of the hospital, by the distance they lived from the hospital, etc. but physician’s advice was, by far, the most important factor. Policy consequences are important; the assumptions underlying the demand-driven model of patient health provider choice are inadequate to explain the pattern of observed responses. An alternative, more adequate model is required, one that takes into account the patient’s confidence in physician referral and advice. (shrink)

Recent media reports have drawn widespread attention to the experiences of patients who are denied reproductive services at Catholic hospitals. For some patients, such as those experiencing miscarriage, denial of appropriate treatment can lead to serious health consequences. However, many patients are unaware of the limitations on services available at religiously affiliated health care institutions. As a result, patients’ ability to make informed and autonomous decisions about where to seek treatment is hindered. There are currently no federal or state laws (...) requiring health care institutions to inform patients directly of the full scope of medical services they are unable to provide on the basis of religion or conscience. Given religious hospitals’ significant role in the provision of health care in the United States, it is essential that patients be clearly informed about institutional limitations on care. This goal would be best served by adopting a federal disclosure law similar to the Patient Self-Determination Act. (shrink)

In this issue of The Journal of Clinical Ethics, we offer a variety of perspectives on the moral and medical responsibilities of professionals with regard to a woman’s choice of where she will birth her baby. The articles in this special issue focus on place of birth, but they have larger resonance for clinicians whose decisions about providing the best possible care require them to sort through evidence, consider their own possible biases and the limitations of their training, and (...) balance the wishes of their patients with the demands of colleagues, hospitals, and insurers. The articles published in this special issue of The Journal of Clinical Ethics will help those who wrestle with such dilemmas in everyday clinical decision making. (shrink)

Book reviewed in this article: Drawing the Line: Life, Death, and Ethical Choices in an American Hospital. By Samuel Gorovitz.

What is hospitality? Who is it addressed to? Hospitality aims at welcoming those who arrive; it demands giving space and time and sharing our own resources with others. In view of the current global migration crisis and in the midst of the social debates and a critique of the failure of affluent countries and Western democracies to respond in solidarity to those in need, this article attempts to re-consider the space for hospitality drawing from the ethical and the political as (...) the two fundamental pillars of social architecture. In an effort to discuss collective grassroots reactions to this general lack of hospitality, I address the Catalan social platform Volem Acollir in their request to the state to open up the borders for the reception of a larger number of migrants. Far from being an individual choice, or an optional political decision, hospitality confronts us with the moral dilemma of the human response to our cultural others. (shrink)

Background: Patients in different countries have different attitudes toward self‐determination and medical information. Little is known how much respect Japanese patients feel should be given for their wishes about medical care and for medical information, and what choices they would make in the face of disagreement. Methods: Ambulatory patients in six clinics of internal medicine at a university hospital were surveyed using a self‐administered questionnaire. Results: A total of 307 patients participated in our survey. Of the respondents, 47% would (...) accept recommendations made by physicians, even if such recommendations were against their wishes; 25% would try to persuade their physician to change their recommendations; and 14% would leave their physician to find a new one. Seventy‐six percent of the respondents thought that physicians should routinely ask patients if they would want to know about a diagnosis of cancer, while 5% disagreed; 59% responded that physicians should inform them of the actual diagnosis, even against the request of their family not to do so, while 24% would want their physician to abide by their family's request and 14% could not decide. One‐third of the respondents who initially said they would want to know the truth would yield to the desires of the family in a case of disagreement. Interpretations: In the face of disagreement regarding medical care and disclosure, Japanese patients tend to respond in a diverse and unpredictable manner. Medical professionals should thus be prudent and ask their patients explicitly what they want regarding medical care and information. (shrink)

BackgroundHospitalized older adults frequently have impaired cognition and must rely on surrogates to make major medical decisions. Ethical standards for surrogate decision making are well delineated, but little is known about what factors surrogates actually consider when making decisions.ObjectivesTo determine factors surrogate decision makers consider when making major medical decisions for hospitalized older adults, and whether or not they adhere to established ethical standards.DesignSemi-structured interview study of the experience and process of decision making.SettingA public safety-net hospital and a tertiary (...) referral hospital in a large city in the Midwest United States.ParticipantsThe study included 35 surrogates with a recent decision-making experience for an inpatient aged 65 or older.MeasurementsThe key factors that surrogates considered when making decisions. Interview transcripts were coded and analyzed using the grounded theory method of qualitative analysis.ResultsSurrogates considered patient-centered factors and surrogate-centered factors. Patient-centered factors included: respecting the patient’s input, using past knowledge of the patient to infer the patient’s wishes, and consider ing what is in the patient’s best interests. Some surrogates expressed a desire for more information about the patient’s prior wishes. Surrogate-centered factors included: surrogate’s wishes as a guide, surrogate’s religious beliefs and/or spirituality, surrogate’s interests, and family consensus.ConclusionOur study indicates that surrogate decision making is more complex than the standard ethical models, which are limited to considerations of the patient’s autonomy and beneficence. Because surrogates also imagine what they would want under the circumstances and consider their own needs and preferences, models of surrogate decision making must account for these additional considerations. Surrogates’ desire for more information about patients’ preferences suggests a need for greater advance care planning. (shrink)

Childbearing is an increasingly complicated matter, which has evolved significantly over the past several decades. Treatment options for infertility have expanded. Prenatal testing and treatment have led to an evolution in obstetrical decision-making, wherein the risks and benefits to the fetus and future child are better understood and more strongly considered in medical management of the pregnant woman. Obstetrics appears to be increasingly interventional; one in three babies in the United States is now born by cesarean section. Neonatal intensive care (...) has markedly improved outcomes for premature babies. A pregnant woman may now be presented with many options— obstetrician or midwife, home or hospital delivery, choices among prenatal testing and monitoring, early induction of labor, cesarean delivery. Health care professionals face similar decisions with regard to what they recommend and the boundaries of safe and responsible care they should make available. Preterm Babies, Fetal Patients, and Childbearing Choices, by John D. Lantos and Diane S. Lauderdale, provides an excellent overview of the available information relevant to these questions. (shrink)

Background: Families and clinicians must often weigh competing priorities when making medical decisions for a pediatric patient at the end of life. Few empirical data exist regarding the importance that clinicians place on varying priorities and whether clinical practice conforms to decision-making standards discussed in the literature. Methods: We administered a discrete choice experiment to understand the relative importance of nine pediatric end-of-life decision-making priorities using responses from 364 nurses and physicians from three intensive care units (ICUs) (pediatric ICU, (...) pediatric cardiothoracic ICU, neonatal ICU) in a large children's hospital, with a 54% response rate. We used latent class analysis to characterize subgroups of health professionals based on their patterns of importance for the nine attributes and examined differences in class membership using multinomial logistic regression. Results: Eighty-two percent of respondents were nurses, consistent with the proportion of nurse and physician staff in the units. Latent class analysis separated our sample of health professionals into five distinct classes. All five groups rated the child's comfort and the best interests as most important but differed regarding how they valued other considerations: Group 1 rated highly consideration of the entire family and medical judgment; Group 2, the entire family's interests, parents’ preferences, and religious beliefs; Group 3, maintaining harmony between parents and medical team; Group 4, responsible use of medical resources; and Group 5, medical evidence and prolonging the child's life. Those with more years of experience were less likely to fall in Group 5 (medical evidence/life-prolonging). Profession was not associated with group membership. Conclusions: Nurses and physicians who care for dying children prioritize foremost the child's best interests and comfort but then possess varying secondary priorities about what is most important when making medical decisions. Pediatric palliative care and ethics consultative services should be aware of and prepared to address these differing concerns. (shrink)

This article explores the issue of homelessness from the perspective of someone who has experienced homelessness, as someone who has worked with the homeless and heard the stories of ‘our friends on the street’, as a mother distressed to see other mothers’ children, no matter their age, in such dire circumstances, and as a philosopher driven to interrogate the hidden assumptions and beliefs motivating our choices, judgments, and behavior. I wish to stress that homelessness must be addressed from the philosophical (...) perspective not only with regard to the individual, but also with regard to the individual as belonging to the ‘we’. This ‘we’ must include all the people involved, from the homeless person laying out her swag under the bridge, to the policy-makers earning fabulous salaries. I’ll propose that a deeper understanding of what’s called ‘double incorporation’ is a crucial step towards galvanizing political will to implement solutions that have already been identified. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Ethics Committees in HospitalsPat Milmoe McCarrick (bio)(Literature about hospital ethics committees has grown enormously since Scope Note 3 first appeared. This update provides new information about resources and documents now available while continuing to include important earlier sources.)Hospital ethics committees increasingly have taken hold in the United States since 1983, when the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (...) encouraged their creation in its report, Deciding to Forego Life-Sustaining Treatment (III, 1983, p. 5).The President's Commission report (pp. 160-64) suggested the following roles for ethics committees: 1) review of treatment decisions made on behalf of incompetent, terminally ill patients; 2) review of medical decisions having ethical implications with the option, in cases of disagreement, to refer cases to a court with proper jurisdiction; 3) provision of social, psychological, spiritual, or other counseling for patients, family members, physicians, or other hospital staff; 4) establishing guidelines regarding treatment or other medical decisions; and 5) sponsoring or conducting educational programs to inform all concerned, including the public, about ethical problems in medicine.No exact count of these committees is available. According to estimates cited by Donald F. Phillips, managing editor of Hospital Ethics, about two-thirds to three-fourths of hospitals with more than 200 beds have ethics committees, as do about one-third of hospitals under 200 beds. He thinks that about half of the 6,000 hospitals in the United States now have working ethics committees.Several journal articles and a court decision in the late 1970s influenced their formation. A 1975 journal article by pediatrician Karen Teel (VII A) urged the use of hospital ethics committees to provide for dialogue in individual care situations as an appropriate sharing of responsibility. Another early article suggested that beyond parents and treating physicians, a "disinterested," mixed lay and medical committee could consider cases about defective newborns to improve the ethical decisionmaking process (VII A, Robertson and Fost, 1976). Three 1977 discussions in the Hastings Center Report highlighted this new concept (VII A, Levine; Shannon; Veatch).Produced at the National Reference Center for Bioethics Literature, Kennedy Institute of Ethics, Georgetown University, Washington, DC 20057. It is supported by funds provided under grant number LM04492 from the National Library of Medicine, National Institutes of Health. Literature available through June 1992 is represented in this Scope Note. [End Page 285]The court decision was the March 31, 1976 ruling by the New Jersey Supreme Court in the Karen Quinlan case. The parents of a young woman in a persistent vegetative state had requested that she be taken off a respirator. The court designated a "prognosis" role for the hospital ethics committee and stipulated that the committee must concur that the patient will never return to a "cognitive, sapient state" before the life-support system can be withdrawn (In the Matter of Karen Quinlan, 70 N.J. 10, 355 A.2d 647, cert. denied sub nom. Garger v. New Jersey, 429 U.S. 922 (1976)). Shortly after the Quinlan decision, Massachusetts General Hospital's Clinical Care Committee created an ad hoc subcommittee (a psychiatrist, a legal counsel, an ICU nurse, an oncologist/internist, a surgeon, and a lay person who had recovered from serious cancer disease) which looked at 15 cases. Based on the subcommittee's success, establishment of a permanent committee to review treatment of the terminally ill was recommended by the critical care committee (VII A, Clinical Care Committee 1976).In its 1984 Baby Doe rules, the federal government recommended establishment of infant care review committees, which promoted the growth of hospital ethics committees (VII C, Povar 1991). In July 1987 Maryland became the first state to require by law that hospitals establish patient care advisory committees to offer advice about choices available in the care of life-threatening illnesses; this requirement was extended to nursing homes in 1990 [codified as amended at Md. Health-Gen. Code Ann. Sections 19-370 to -374 (1990)] (VII C, Hollinger 1991).Recently the role for these committees has been noted in the Accreditation Manual for Hospitals, 1992 Supplement (p. 10, Patient Rights, Section RI. 1.1.6.1) of the Joint Commission... (shrink)

McNaught, Keith; Shaw, Geoffrey Organisations ubiquitously seek feedback from their customers, for a vast range of reasons. The data may assist in improving services, responding to concerns, celebrating excellent service, or determining that desired standards are being achieved. Australian hospitals utilise a range of techniques to collect patient feedback, and to use that patient feedback as part of continuous improvement. Whilst every hospital in Australia is expected to provide excellent medical care and treatment, private hospitals regularly purport to offer (...) some form of 'distinctive care', and options for patients that do not usually exist in public hospitals. Most often, private hospital patients are contributors to private health insurance, which is expensive, and additional 'out of pocket' expenses are the norm. Patients, therefore, often have particular expectations of a private hospital, which may include their choice of doctor, surgeon or anaesthetist; a private room and ensuite bathroom; a high standard of food choices; being kept well-informed with regard to their treatment; flexible hours and arrangements for visitors; a longer stay; and personalised care. (shrink)

The number of children with chronic critical illness (CCI) is a growing population in the United States. A defining characteristic of this population is a prolonged hospital stay. Our study assessed the proportion of pediatric patients with chronic critical illness in U.S. hospitals at a specific point in time, and identified a subset of children whose hospital stay lasted for months to years. The potential harms of a prolonged hospitalization for children with CCI, which include over treatment, infection, (...) disruption of family life, and the intensive utilization of resources—combined with the moral distress experienced by the clinicians who care for the children, suggest the need for ethical analysis of this growing issue to identify actions that could be taken at the clinical and health systems levels to reduce the harms associated with prolonged hospital stay.In this article we present three real cases from our study that involved a very long hospital stay. We applied a framework developed by Mackenzie, Rogers, and Dodds to analyze inherent, situational, and pathogenic vulnerabilities to examine the ways that interventions intended to remedy one source of harm for the children in our cohort inadvertently created other harms. We examined the complex ways that children with protracted hospitalization are vulnerable to the choices made by their family and clinicians, as well as by healthcare systems and communities. Finally, we used this analysis to summarize actions and ethical responses to this growing patient population. Such an understanding is essential to making clinical and ethical decisions that arise for children who are at risk for a very long stay in the hospital. (shrink)

It is often assumed that if the fetus is a person, then abortion should be illegal. Thomson1 laid the groundwork to challenge this assumption, and Boonin2 has recently argued that it is false: he argues that abortion should be legal even if the fetus is a person. In this article, I explain both Thomson’s and Boonin’s reason for thinking that abortion should be legal even if the fetus is a person. After this, I show that Thomson’s and Boonin’s argument for (...) legalised abortion fail; they have not given us good reason for thinking abortion should be legal.1 Finally, I argue that—if we play Boonin’s game—abortion should be illegal. When discussing the ethics and politics of abortion, whether the fetus is a person is usually central.3 4.2 However, Thomson1 long ago challenged this view. She argued that abortion is permissible even if the fetus is a person. To do so, she asks us to consider a case in which you are non-consensually taken to a hospital and hooked up to a famous violinist. The violinist, if he is to survive, needs to filter his blood through your body. After 9 months, he will be fine and you can unplug yourself and go on your way. If you unplug yourself prior to this, however, he will die. Is it permissible to unplug yourself? Thomson thinks the answer is ‘yes’. And this, she thinks, shows that abortion is permissible even if the fetus is a person. While the majority of her article focuses on the ethics of abortion, it is clear that she also aims to show that abortion should be legal if the fetus is a person; she would no doubt reject the view that the state is right to coerce you into …. (shrink)

Within the research community, it is generally accepted that consent processes for research should be culturally appropriate and tailored to the context, yet researchers continue to grapple with what valid consent means within specific stakeholder groups. In this study, we explored the consent practices and attitudes regarding essential information required for the consent process within hospital-based trial communities from four referral hospitals in Vietnam. We collected surveys from and conducted semi-structured interviews with study physicians, study nurses, ethics committee members, (...) and study participants and family members regarding their experiences of participating in research, their perspectives toward research, and their views about various elements of the consent process. In our findings, we describe three interrelated themes related to the consent process: words and regulation; reimbursement, suspicions, and joining; and responsibilities. In general, stakeholders had highly varied perspectives of nghiên cứu and researchers used varying levels of detail regarding all aspects of the study in the consent process to build trust with and/or promote potential research participants’ choices about taking part in research. Findings additionally highlight how researchers felt that offering financial reimbursements in a hospital setting, where payment for services was routine, would be unfamiliar to participants and could raise suspicions about the research. Participants, however, focused their discussions on reimbursement or alternative reasons for joining the study, such as health related benefits or altruism. Finally, participants often relied on their physician to help them decide about joining a study or not. Further research is needed to understand how researchers and participants make sense of and practice consent, and how that impacts participants’ decision-making about research participation. To promote valid consent within this context, it is important to engage with hospital-based trial communities as a whole. The data from this study will inform future research on consent, guide the revisions of consent related policies within our research sites and point to several larger issues surrounding researcher-participant expectations, communication, and trust. (shrink)

Although there is a long-standing international debate concerning the privatization and corporatization of health services, there has been relatively little systematic analysis of the ways these types of reform manifest. We examine the impact of privatization and corporatization on public hospitals, and in particular on hospitals’ autonomy and accountability, with two aims: to uncover the key themes in the literature, and to consider implementation issues. The review of 2,319 articles was conducted using content analysis and a discussion of selected key (...) issues. Several major themes appear in the privatization and corporatization literature, including their use as tools in health systems reform, and the role of governments in sponsoring the processes. We show that much of the underlying argument is ideological rather than evidence based. Those who promote versions of privatization or corporatization claim that decreased government involvement in the management of hospitals leads inter alia to benefits such as greater efficiency, better quality services, and increased choice for patients. Those who argue against say that increased privatization leads to deleterious outcomes such as decreased equity, compromised efficiency and poorer quality of care. The evidence is often weak and at times conflicting. Privatization and corporatization are difficult to implement, and at best produce mixed results, and their impact seems to depend more on the motivation of the evaluator than the standard of the results. These debates are of a type that is to a large extent only resolvable ideologically. (shrink)

Diagnostic self-testing devices are being developed for many illnesses, chronic diseases and infections. These will be used in hospitals, at point-of-care facilities and at home. Designed to allow earlier detection of diseases, self-testing diagnostic devices may improve disease prevention, slow the progression of disease and facilitate better treatment outcomes. These devices have the potential to benefit both the individual and society by enabling individuals to take a more proactive role in the maintenance of their health and by helping society improve (...) health and reduce health costs. However, the full implications of future home-based diagnostic technology for individuals and society remain unclear due to their novelty. We argue that the development of diagnostic tools, especially for home use, will heighten a number of ethical challenges. This paper will explore some of the ethical implications of home-based self-testing diagnostic devices for the autonomous and relational dimensions of the person. This will be facilitated by examining the impact of diagnostic devices for individual autonomy, for the delivery of accurate diagnosis and for the personal significance of the information for the user. The latter will be examined using Charles Taylor's view of personhood and his emphasis on human agency and interpretation. While the ethical issues are not necessarily new, the development of home-based self-testing diagnostic devices will make issues regarding autonomy, accuracy of information and personal significance more and more demanding. This will be the case particularly when an individual's autonomous choices come into conflict with the person's relational responsibilities. (shrink)

This research explores current controversies within country dance communities and the implications of cultural and ethical issues related to representation of gender and race in a KOS for an ICH, while investigating the importance of context and the applicability of semantic approaches in the implementation of synonym rings. During development of a controlled vocabulary to represent dance concepts for country dance choreography, this study encountered and considered the importance of history and culture regarding synonymous and near-synonymous terms used to describe (...) dance roles and choreographic elements. A subset of names for the same choreographic concepts across four subdomains of country dance (English country dance, Scottish country dance, contra dance, and modern western square dance) were used as a case study. These concepts included traditionally gendered dance roles and choreographic terms with a racially pejorative history. Through the lens of existing research on ethical knowl­edge organization, this study focused on principles and methods of transparency, multivocality, cultural warrant, cultural hospitality, and intersectionality to conduct a domain analysis of country dance resources. The analysis revealed differing levels of engagement and distinction among dance practitioners and communities for their preferences to use different terms for the same concept. Various lexical, grammatical, affective, social, political, and cultural aspects also emerged as important contextual factors for the use and assignment of terms. As a result, this study proposes the use of semantic annotation to represent those contextual factors and to allow mechanisms of user choice in the design of a country dance knowl­edge organization system. Future research arising from this study would focus on expanding examination to other country dance genres and continued exploration of the use of semantic approaches to represent contextual factors in controlled vocabulary development. (shrink)

In this late story, Truman Capote celebrates a peculiar form of object relations to expand definitions of sexuality beyond conventional identity categories and thus suggest a more expansive model of social inclusion and civil rights. Building on work in animal studies, queer theory, and the new materialities, I argue that the literalism of these object relations decenters the human and reimagines a wider ethics of belonging. The story describes an elderly widow who keeps all of her deceased cats in a (...) freezer because she cannot bear to be parted from them. Although the story prepares us to expect that the frozen cats could be symbols or surrogates for her dead husband, it becomes clear that she loves her cats literally as cats and nothing more. Capote pushes us to acknowledge and accept this love for her cats just as it is. And by doing so, he invites us to imagine a more hospitable world in which we accommodate other kinds of object-choice beyond the confines of heterosexual marriage, including but certainly not limited to his own homosexuality. (shrink)

Female genital cutting (FGC) is generally understood as a gendered harm, abusive cultural practice and human rights violation. By contrast, male genital cutting (MGC) is held to be minimally invasive, an expression of religious identity and a legitimate parental choice. Yet scholars increasingly problematize this dichotomy, arguing that male and female genital cutting can occasion comparable levels of harm. In 2015 this academic critique received judicial endorsement, with Sir James Munby's acknowledgement that all genital cutting can cause ‘significant harm’. (...) This article investigates the harm occasioned by MGC. It is informed by a Freedom of Information (FoI) study which provides some empirical evidence of the nature and frequency of physical harm caused by MGC in U.K. hospitals. While acknowledging the challenges and limitations of FoI research, we outline important lessons that this preliminary study contains for medical ethics, law and policy. It provides some empirical evidence to support claims regarding the risks which accompany the procedure and the obligation of health professionals to disclose them, and reveals the paucity of measures in place to ensure that harms are recorded, disclosed and monitored. (shrink)

Crisis resolution and home treatment teams have been introduced into mental health care in the UK because, in general, patients do not want to be admitted to hospital, treatment at home is cheaper and in the only randomized controlled trial conducted so far there was no difference in symptomatic outcome. However, because of compulsory gate-keeping by CRHT teams, some patients no longer have the option of going to hospital if they want to. This aspect of the introduction of (...) CRHT teams has not been discussed so far, but it certainly warrants further examination. Intervention through CRHT teams may in fact increase compulsory admissions and serious and untoward incidents, although this is not certain. Sufferers from psychosis are the patient group most likely to be compulsorily admitted to hospital and they are generally considered less responsible for serious and untoward incidents. Therefore, a possible solution could be to offer a choice to some patients, namely those with a psychotic disorder, on whether they want to be admitted or not. At least one should investigate what the consequences of this policy would be, if it were to be adopted in a test region. This example shows that in developing policies for rationing health care, it can be important to look at subgroups and not just at average results when determining the best course of action. (shrink)

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

Problems and choices -- Who shall live? -- The physician : the captain of the team -- The hospital : the house of hope -- Drugs : the key to modern medicine -- Paying for medical care.

‘[S]o act externally that the free use of your choice can coexist with the freedom of everyone in accordance with a universal law’ . This is Immanuel Kant's first principle of justice, stated in the imperative form appropriate for human beings, beings who can comply with it but who might not do so. For Kant it is a principle that applies not only to relations among citizens within a state, but to those among states themselves and among citizens of (...) varying nationality. As Kant's Rechtslehre makes clear, the universal law of justice, as he terms it, lies at the foundation of a set of standards that together form his theory of justice. Subsidiary standards follow from this most fundamental one by argument and together form a system, or metaphysics, of related principles. The system is hierarchical, that is, we can argue from the universal law of justice to increasingly concrete standards that help us apply it to various questions and in varying contexts. (shrink)

Objective: To assess the adequacy of the process of informed consent for surgical patients at the University Hospital of the West Indies. Method: The study is a prospective, cross-sectional, descriptive study. 210 patients at the University Hospital of the West Indies were interviewed using a standardised investigator-administered questionnaire, developed by the authors, after obtaining witnessed, informed consent for participation in the study. Data were analysed using SPSS V.12 for Windows. Results: Of the patients, 39.4% were male. Of the (...) surgical procedures, 68.6% were scheduled, 7.6% urgent and 23.8% emergency, 35.2% were minor and 64.8% major. Information imparted/received was acceptable in 40% of cases, good in 24% and inadequate (unacceptable) in 36% of cases. Almost all (97.6%) patients stated that they understood why an operation was planned and 93.3% thought that they had given informed consent. Most (95.2%) thought that they had free choice and made up their own mind. A quarter (25.2%) of all patients were told that it was mandatory for them to sign the form. There was a discussion of possible side effects and complications in 56.7% of patients. Conclusions: This study clearly indicates that surgical patients at the University Hospital of the West Indies feel that they have given informed consent. However, it also suggests that more information should be given to patients for consent to be truly informed. (shrink)

The ‘family consent’ process has been placed at the centre of Chinese clinical practice. Although there has been critical analysis of how the process functions in relation to the autonomy and rights of patients, there has been little examination of the perceptions and attitude of patients and their families and the medical professionals, in relation to moral dilemmas that arise in real cases in the bioethical discourse. When faced with a consent form in an emergency situation, the family member's capacity (...) to act is reduced, as he/she becomes enmeshed in the hospital structure of tacit, socially-imposed rules. In a questionnaires based on a real death case in 2008, 70.9% of the surveyed medical professionals (n = 3,665) disagreed with performing surgery without the consent of the family even if the patient's life was in danger, while 36.6% of the surveyed patients (n = 1,198) hold the same position. This work demonstrates the weakness of the family consent process as a safeguard of patient's autonomy. Finally, I argue that saving the patient's life should be the overriding obligation rather than the respect for the surrogate's autonomous choice at such a decisive moment. (shrink)

Dignity is a value inherent to all human beings, guaranteed to every individual from birth, and influenced by culture and society. It is protected by various laws and declarations, and represents one of the fundamental human rights. Preserving human dignity is an essential aspect of nursing practice and a central element of care. Dignity is a highly subjective and personal concept; there may be variations in the way that patients perceive it and in the ways that nurses can guarantee it. (...) A systematic review of the qualitative literature was conducted to obtain a comprehensive understanding of adult patients’ perceptions of dignity in a hospital setting. This review adhered to the PRISMA Statement for reporting systematic reviews, and the results were reported in accordance with the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. Major databases (PubMed, CINAHL, Scopus, and PsycINFO) were consulted and resulted in the inclusion of 21 studies. Methodological quality was assessed using the Critical Appraisal Skills Program (CASP) Checklist for Qualitative Studies. Six main themes emerged from the data analysis: (1) The concept of dignity and its various dimensions; (2) The significance of maintaining one’s own privacy and confidentiality; (3) The hospital environment’s influence on patients’ dignity; (4) Healthcare professionals’ characteristics and behaviours that affect dignity; (5) The role of communication and the relationship with healthcare providers; and (6) The patient’s ability to make choices and be involved actively in their care. These findings underscore the importance of understanding caregivers’ perspectives on dignity to ensure that they provide respectful and dignified care and treatment that prioritizes the patient’s mental and physical needs. (shrink)

Although advance care planning can lead to more patient-centered care, the communication around it can be challenging in acute care hospitals, where saving a life or shortening hospitalization is important priorities. Our qualitative study in an acute care hospital in Japan revealed when specifically physicians and nurses start communication to facilitate ACP. Seven physicians and 19 nurses responded to an interview request, explaining when ACP communication was initiated with 32 patients aged 65 or older. Our qualitative approach employed descriptive (...) analysis to identify major themes, which included “initiation by patients” and “initiation by healthcare professionals.” In the latter case, seven specific triggers were identified: when the patients’ medical condition changed in terms of symptom relief, when the patients’ medical condition changed in terms of prognostic prediction, when serious events occurred, when a choice of treatment was presented, when the location for end-of-life care was chosen, when the patients’ cognitive function deteriorated, and when serious events settled down. Within this group of healthcare professionals, physicians were more focused on changes in their patients’ medical condition, whereas nurses focused more on their patients’ desire for a long-term perspective. Nurses encouraged patients to consider ACP themselves, which developed into an approach to respect patients’ autonomy. In acute care hospitals, it appeared to be desirable to have an early discussion where patients could understand the significance ACP, which would matter even after their discharge from the hospital. (shrink)

ABSTRACTDiagnostic self‐testing devices are being developed for many illnesses, chronic diseases and infections. These will be used in hospitals, at point‐of‐care facilities and at home. Designed to allow earlier detection of diseases, self‐testing diagnostic devices may improve disease prevention, slow the progression of disease and facilitate better treatment outcomes. These devices have the potential to benefit both the individual and society by enabling individuals to take a more proactive role in the maintenance of their health and by helping society improve (...) health and reduce health costs. However, the full implications of future home‐based diagnostic technology for individuals and society remain unclear due to their novelty.We argue that the development of diagnostic tools, especially for home use, will heighten a number of ethical challenges. This paper will explore some of the ethical implications of home‐based self‐testing diagnostic devices for the autonomous and relational dimensions of the person. This will be facilitated by examining the impact of diagnostic devices for individual autonomy, for the delivery of accurate diagnosis and for the personal significance of the information for the user. The latter will be examined using Charles Taylor's view of personhood and his emphasis on human agency and interpretation.While the ethical issues are not necessarily new, the development of home‐based self‐testing diagnostic devices will make issues regarding autonomy, accuracy of information and personal significance more and more demanding. This will be the case particularly when an individual's autonomous choices come into conflict with the person's relational responsibilities. (shrink)

As a relative concept, privacy is difficult to define in universal terms. In the New Zealand setting recent legislation aims to protect patients’ privacy but anecdotal evidence suggests that these policies are not well understood by some providers and recipients of health care. This qualitative study set out to identify some of the issues by exploring former patients’ perceptions of privacy in shared hospital rooms. The findings suggest a conditional acceptance of a loss of privacy in an environment dictated (...) by architectural structure and by fiscal and time constraints. Participants indicated an awareness that personal information could be overheard and that their preference for a choice of setting for serious discussions was desirable. Some enjoyed the support offered in shared rooms, while, for others, overhearing another person’s health issues caused unnecessary distress. The participants suggested that knowing they could be overheard constrained information disclosure. This withholding of information has implications for health professionals’ ability to diagnose and treat patients appropriately. (shrink)

BackgroundMost end-of-life decisions are made by family members. Current ethical guidelines for family decision making are based on a hierarchical model that emphasizes the patient’s wishes over his or her best interests. Evidence suggests that the model poorly reflects the strategies and priorities of many families.MethodsResearchers observed and recorded 26 decision-making meetings between hospital staff and family members. Semi-structured follow-up interviews were conducted. Transcriptions were analyzed using qualitative techniques.ResultsFor both staff and families, consideration of a patient’s best interests generally (...) took priority over the patient’s wishes. Staff generally introduced discussion of the patient’s wishes for rhetorical purposes, such as persuasion. Competing moral frameworks, which de-emphasized the salience of patients’ autonomy and “right to choose,” played a role in family decision making.ConclusionsThe priority given to the patients’ wishes in the hierarchical model does not reflect the priorities of staff and families in making decisions about end-of-life care. (shrink)

Breastfeeding and human milk are the normative standards for infant feeding and nutrition. Given the documented short- and long-term medical and neurodevelopment advantages of breastfeeding, infant nutrition should be considered a public health issue and not only a lifestyle choice.In a letter sent out to 2600 hospitals across the country they [Public Citizen] demand that healthcare facilities “immediately discontinue the distribution of commercial infant formula manufacturer discharge bags,” claiming it undermines women’s success at breastfeeding. What they failed to explain (...) is why a woman’s decision regarding her own tits is anyone’s fucking business but her own.Clearly, policies to promote breast-feeding.. (shrink)

Lilly has a story to tell. It is her story. She sits comfortably in her hospital bed, with a nasal cannula under her nose providing a steady stream of oxygen. She says she really does not need it now but is more comfortable with it. She straightens the hem of her hospital gown. She folds her hands and places them carefully on her lap. This diminutive, carefully groomed elderly woman, a widow for 7 years, likes to be presentable (...) when she has a guest." “Please sit down,” she says, pointing to the chair. She would be no more inviting if we were in her own living room. “You’re in the hospital. What happened?” “Heart problems”, she says. “Heart failure. I’ve been sick for years. I’m old, my heart is old. When it gets bad I have to struggle to breathe.” “Is that what happened this time?” “I didn’t know it was happening this time,” she says with some surprise. “I am very active. I go out every day, I do my shopping, cooking. I like to cook. I was walking. It started. The hill is very steep from the avenue to my house so I made nothing of it. Out of breath. I took my time, rested and then walked again. It was also hard for me to walk up the four flights to my apartment. I stopped every few steps. So what? An old lady getting tired and out of breath. Nothing new about that. I missed all the signs. Sonya didn’t. She’s a neighbour and when she saw me she said what she was seeing wasn’t right. I don’t know what she saw. I do know how I felt. I was getting sick … ". (shrink)

In a recent article in the American Journal of Obstetrics and Gynecology, Frank Chervenak et al. argue that home birth is less safe than hospital birth, and that physicians have a dual duty to avoid any collaboration with home birth midwives and to make hospital birth more psychologically and socially supportive to accommodate women who want more choices during labor. The assertion that home birth is significantly less safe than hospital birth has been responded to by Howard (...) Minkoff and Jeffrey Ecker and by a recent large observational study of home birth outcomes in America. Minkoff and Ecker argue that the evidence supports, at most, a minimal increased.. (shrink)

I read Dr Cherniack’s article regarding do not resuscitate orders with interest.1 One of the problems with DNR orders is the patients’ assumption that if there is no DNR order they will survive resuscitative efforts. This of course is far from the truth. In my hospital these orders have been modified to “do not attempt to resuscitate” orders. One cannot be truly autonomous without being informed. Long term survival, as measured only by being alive, following inhouse cardiac arrest, is (...) about 15% over all age groups.2 In sick elderly patients over 70 years of age who survive a cardiac arrest, the subsequent hospital mortality approaches 100%. This fact, and concerns about harm, influence physicians’ attitudes, …. (shrink)

As space travel and intentions to colonise other planets are becoming the norm in public debate and scholarship, we must also confront the technical and survival challenges that emerge from these hostile environments. This paper aims to evaluate the various arguments proposed to meet the challenges of human space travel and extraterrestrial planetary colonisation. In particular, two primary solutions have been present in the literature as the most straightforward solutions to the rigours of extraterrestrial survival and flourishing: (1) geoengineering, where (...) the environment is modified to become hospitable to its inhabitants, and (2) human (bio)enhancement where the genetic heritage of humans is modified to make them more resilient to the difficulties they may encounter as well as to permit them to thrive in non-terrestrial environments. Both positions have strong arguments supporting them but also severe philosophical and practical drawbacks when exposed to different circumstances. This paper aims to show that a principled stance where one position is accepted wholesale necessarily comes at the opportunity cost of the other where the other might be better suited, practically and morally. This paper concludes that case-by-case evaluations of the solutions to space travel and extraterrestrial colonisation are necessary to ensure moral congruency and the survival and flourishing of astronauts now and into the future. (shrink)

At a time when even a brief hospital stay means becoming terrifyingly dependent on the kindness of strangers, this compassionate and practical book by a prominent medical ethicist gives power back to patients while providing invaluable guidance to their friends and families. "A cutting-edge book about cutting-edge issues (that) every American must know. . . ".--Alan Dershowitz.

Registered nurses in psychiatric-mental health nursing continuously balance the ethical principles of duty to do good (beneficence) and no harm (non-maleficence) with the duty to respect patient choices (autonomy). However, the problem of nurses’ level of control versus patients’ choices remains a challenge. The aim of this article is to discuss how nurses accomplish their simultaneous responsibility for balancing patient safety (beneficence and non-maleficence) with patient choices (autonomy) through the theory of protective empowering. This is done by reflecting on interview (...) excerpts about caring from 17 registered nurses taking part in a grounded theory study conducted in three acute urban psychiatric hospital settings in Canada. The interplay between the protective and empowering dimensions of the theory of protective empowering was found to correspond with international, national, and local nursing codes of ethics and standards. The overall core process of protective empowering, and its associated reflective questions, is offered as a new lens for balancing patient safety with choices. (shrink)

: The film "Who Should Survive?: One of the Choices on Our Conscience" contains a dramatization of the death of an infant with Down syndrome as the result of the parents' decision not to have a congenital intestinal obstruction surgically corrected. The dramatization was based on two similar cases at The Johns Hopkins Hospital and was financed by the Joseph P. Kennedy, Jr., Foundation. When "Who Should Survive?" was exhibited in 1971, the public reaction was generally critical of the (...) parents' decision and the physicians' inaction. Although technological developments in medicine were a necessary condition for the production of this film and its unanticipated reception, they were not a sufficient condition. The proximate cause was a changed understanding of the capabilities of individuals with Down syndrome. Part of the impetus for this change was data showing the adverse effects of institutionalization on normal children. (shrink)

It has recently been reported that some hospitals in the UK have placed a blanket restriction on the provision of maternal request caesarean sections as a result of the COVID-19 pandemic. Pregnancy and birthing services are obviously facing challenges during the current emergency, but we argue that a blanket ban on MRCS is both inappropriate and disproportionate. In this paper, we highlight the importance of MRCS for pregnant people’s health and autonomy in childbirth and argue that this remains crucial during (...) the current emergency. We consider some potential arguments—based on pregnant people’s health and resource allocation—that might be considered justification for the limitation of such services. We demonstrate, however, that these arguments are not as persuasive as they might appear because there is limited evidence to indicate either that provision of MRCS is always dangerous for pregnant people in the circumstances or would be a substantial burden on a hospital’s ability to respond to the pandemic. Furthermore, we argue that even if MRCS was not a service that hospitals are equipped to offer to all pregnant persons who seek it, the current circumstances cannot justify a blanket ban on an important service and due attention must be paid to individual circumstances. (shrink)

Approximately one in three American adults has executed a living will or healthcare declaration stating personal preferences regarding medical treatment in the event that he or she becomes terminally ill and unable to communicate. This figure stands in striking contrast to the 90% of Americans who, when asked, express specific wishes regarding their choice of care under such circumstances. Congress attempted to increase the number of Americans with advance directives when it passed the Patient Self Determination Act in 1990, (...) billed at the time as the “Miranda Warning” of medicine, which requires hospitals and nursing homes receiving federal funds both to inform patients of their right to refuse life-sustaining care and to record all written directive in patients’ charts. (shrink)