ObjectiveThis study aims to investigate the lived experience in patients with obstructive sleep apnea syndrome and comorbid obesity following after continuous positive airway pressure therapy made with the disease the device, and to identify barriers and facilitators to the use of CPAP to improve rehabilitation provision and aid in disease self-management.MethodsQualitative research was conducted using three focus groups with a representative sample of 32 inpatients undergoing a 1-month pulmonary rehabilitation program at the IRCSS Istituto Auxologico Italiano San Giuseppe Hospital, Verbania, (...) Italy. The focus groups were recorded on tape, and contemporaneous notes were made. The tapes were transcribed verbatim, and Interpretative Phenomenological Analysis was used to develop themes.ResultsSix main themes were extracted: Living the diagnosis as a shock; You should not sleep on it: the importance of prevention; The adjustment to CPAP; Barriers and facilitators to the use of CPAP; Three in a bed; and The relationship with the healthcare system.ConclusionResults of this study suggest potential avenues for interventions to increase adherence to CPAP, including the provision of information and continued support. Individual counseling providing strategies aimed at helping the person to cope with the emotional problem and relational difficulties associated with the use of CPAP, and at strengthening self-efficacy and self-management skills are also encouraged for optimal care during the rehabilitation program. (shrink)

BackgroundKeeping the patients well and fully informed about diagnosis, prognosis, and treatments is one of the patient’s rights in any healthcare system. Although all healthcare providers have the same viewpoint about rendering the truth in treatment process, sometimes the truth is not told to the patients; that is why the healthcare staff tell “white lie” instead. This study aimed to explore the nurses’ experience of white lies during patient care.MethodsThis qualitative study was conducted from June to December (...) 2018. Eighteen hospital nurses were recruited with maximum variation from ten state-run educational hospitals affiliated to Tehran University of Medical Sciences. Purposeful sampling was used and data were collected by semi-structured interviews that were continued until data saturation. Data were classified and analyzed by content analysis approach.ResultsThe data analysis in this study resulted in four main categories and 11 subcategories. The main categories included hope crisis, bad news, cultural diversity, and nurses’ limited professional competences.ConclusionResults of the present study showed that, white lie told by nurses during patient care may be due to a wide range of patient, nurse and/or organizational related factors. Communication was the main factor that influenced information rendering. Nurses’ communication with patients should be based on mutual respect, trust and adequate cultural knowledge, and also nurses should provide precise information to patients, so that they can make accurate decisions regarding their health care. (shrink)

This book is a comprehensive and unique text and reference in medical ethics. By far the most inclusive set of primary documents and articles in the field ever published, it contains over 100 selections. Virtually all pieces appear in their entirety, and a significant number would be difficult to obtain elsewhere. The volume draws upon the literature of history, medicine, philosophical and religious ethics, economics, and sociology. A wide range of topics and issues are covered, such as law and medicine, (...) truth-telling by the physician, research, population policy, genetics, abortion, dying, and individual rights in medical care. The selections span the centuries, beginning with material from the works of Hippocrates, continuing through Thomas Percival, John Stuart Mill, and Claude Bernard, down to modern commentators like Henry K. Beecher, Walsh McDermott, David L. Bazelon, Paul Freund, H. L. A. Hart, John Rawls, Paul Ramsey, Richard McCormick, Rashi Fein, and Bernard Barber. The text has eight major divisions, beginning with sections on the ethical dimensions of the physician-patient relationship in history; the moral bases of medical ethics; and regulation, compulsion, and protection of the consumer in clinical medicine and public health. Each of these sections includes key essays that appear for the first time. All of the book's major divisions contain primary documents: codes such as the Hippocratic Oath, Medieval Law for the Regulation of Medicine, and the first as well as the most recent code of the American Medical Association; court decisions, including those on Karen Quinlan and on abortion in the United States and West Germany; government documents such as the statement of the National Commission on the Protection of Human Subjects, the Tuskegee Syphilis Report, the British Parliamentary debate on euthanasia, and the Council of Europe on rights of the sick and dying; and various published guidelines such as the Harvard Medical School brain death criteria, the American Hospital Association on patient's rights, and Pope Pius XII on the prolongation of life. Cases that illustrate moral dilemmas are provided for discussion purposes. Each section is preceded by a succinct editor's introduction. The documents and essays are of practical value for practitioners and students in medicine, law, ethics, and counselling, and for individual patients and groups concerned with medical care. Through encompassing divergent viewpoints, the essays and primary documents were selected to encourage humane practices and deepen understanding of the multiple traditions that shaped and do shape the development of medicine. (shrink)

This paper addresses ethical concerns emanating from the practice of using patients for health care education. It shows how some of the ways that patients are used in educational strategies to bridge theory-practice gaps can cause harm to patients and patient-practitioner relationships, thus failing to meet acceptable standards of professional practice. This will continue unless there is increased awareness of the need for protection of human rights in teaching situations. Unnecessary exposure of patients, failing to obtain explicit consent, (...) causing harm to vulnerable or disadvantaged groups and inappropriate use of information, though normally regarded as unacceptable professional practices, may go unrecognised in meeting educational needs, widening rather than narrowing theory-practice gaps. (shrink)

Background International electives are often considered a valuable learning opportunity for medical students. Yet, as travelling to lower and middle income countries (LMICs) becomes more common, ethical considerations of such practices emerge. We conducted a scoping review to assess the extent to which five ethical themes were addressed in existing literature about electives, with the aim of investigating the ethical impacts of medical student electives on local resources, patients and clinicians in LMICs. Methods We systematically searched PubMed, Global Health and (...) Embase databases using the search terms “(ethics) AND (medical electives)”. Thematic content analysis was undertaken using a combination of deductive and inductive themes. The deductive themes included: exceeding clinical competence, use of limited local resources, respect for patients and local culture, collaboration with local community/colleagues, and one-sided benefits in partnership. In addition, we also allowed for emerging themes within the data, and conducted a narrative synthesis of the results. Results A total of 37 papers discussed ethical issues relating to medical student international electives to LMICs. More publications were written from the medical student perspective (n = 14), than by the host-institution (n = 5), with nearly half written from third-party perspectives (n = 18). Negative impacts on local host students and impact upon patient care were identified as additional ethical considerations. Conclusions Our review demonstrated that while there is a degree of awareness in the existing literature of the potential negative impacts of medical electives to local LMIC students’ access to medical education and patient care, continued work is needed to ensure equitable partnerships. We recommend that these ethical themes should be further explored in pre-departure elective teaching courses and post-elective debriefs to increase medical students’ awareness of the impact of their presence on host communities. (shrink)

The occurrence of poor patient care is emerging as one of the most significant, challenging, and critical issues confronting contemporary nursing and those responsible for the provision of health care more generally. Indeed, as a consequence of the increased recognition of the manner in which nurses can be implicated in the occurrence of poor patient care, there has been sustained critical debate that seeks to understand how such healthcare failings can occur and, in particular, why (...) nurses seemingly fail to intervene, raise concerns, and effectively respond to prevent the occurrence and continuation of such poor patient care. In seeking to contribute to this critical discussion, and in contrast to those “situational explanations” that maintain that the failure to raise concerns is a consequence of the contextual factors and challenging conditions to which nurses can be subject in the clinical setting, this paper will provide a resolutely philosophical analysis of that failure. In particular, it will draw upon the work of Jean‐Paul Sartre—the French philosopher generally regarded as one of the most influential thinkers of the twentieth century—in order to propose that his work can be productively recontextualized to provide a detailed, challenging, and provocative critical analysis of the occurrence and continuation of poor patient care and the role of individual nurse practitioners in such healthcare failings. (shrink)

In 2017, Americans spent over $3.4 trillion-nearly 18% of gross domestic poduct-on health care. This spending is unevenly distributed: Almost a quarter is spent on the costliest 1% of patients, and almost half on the costliest 5%. Most of these patients soon return to a lower percentile, but many continue to incur health care costs in the top percentiles year after year. This Article focuses on the challenges that persistently expensive patients present for health law and policy, and (...) how fairly dividing their medical costs among payers illuminates fundamental normative choices about the design and reform of health insurance. In doing so, this Article draws on bioethical and health policy analyses of the fair distribution of medical costs, and examines how legal doctrine shapes health systems' options for responding to expensive patients. Part I of this Article discusses two real-world examples of expensive patients and the debate surrounding them, including the case of an Iowa teenager with hemophilia whose treatments cost more than $10 million per year. Part II then examines the normative question of how the costs of treating expensive patients' medical conditions should be shared and identifies three different dimensions of sharing: (1) scope, from narrow (plan members only) to broad (all of society); (2) boundedness, whether there are limits on the costs others can be asked to bear; and (3) progressivity, whether wealthier individuals are asked to bear more costs (similar to progressivity in tax). Part III then considers how health care reform choices could advance or hamper the adoption of broad, bounded, progressive sharing, with a focus on recent state-level reinsurance programs that legal scholarship has not yet analyzed in depth. -/- This Article contributes to the literature on health care reform in three interlocking ways. First, it develops a novel proposal for fairly sharing the cost of expensive patients' care that could usefully inform state- and federal-level policy discussions. Second, it provides a normative, rather than purely political or economic, analysis of existing and proposed options for sharing expensive patients' costs. Third, it bridges the disconnected literature on reinsurance, limit setting, and health care financing, identifying how proposals in these different areas intersect. (shrink)

Developing ethical standards for clinical use of large-scale genome and exome sequencing has proven challenging, in part due to the inevitability of incidental or secondary findings. Policy of the American College of Medical Genetics and Genomics has evolved but remains problematic. In 2013, ACMG issued policy recommending mandatory analysis of 56 extra genes whenever sequencing was ordered for any indication, in order to ascertain positive findings in pathogenic and actionable genes. Widespread objection yielded a 2014 amendment allowing patients to opt-out (...) from analysis of the extra genes. In 2015, ACMG published the amended policy, providing that patients could opt out of the full set of extra genes, but not a subset. In 2016, ACMG enlarged the set and indicated planned expansion of the roster of extra genes to include pharmacogenetic findings. ACMG policy does not protect the respect for patient choice that prevails in other domains of clinical medicine, where informed consent allows patients to opt in to desired testing. By creating an expanding domain of genomic testing that will be routinely conducted unless patients reject the entire set of extra tests, ACMG creates an exceptional domain clinical practice that is not supported by ethics or science. (shrink)

A young man, terminally ill and in extreme suffering, asks to be removed from life support, requesting morphine first so he'll be asleep when the machine stops. His physician agrees, but the hospital's chief administrator intervenes, arguing that the morphine might itself cause death, leaving the physician open to criminal indictment for murder. To placate the administrator, the doctor and patient reach a grim compromise: life support will be disconnected first, and only after manifest signs of suffering appear will (...) the physician administer the morphine, to alleviate pain. The patient's request is ultimately respected, but many staff members feel he has been made to suffer needlessly. This is just one of many cases Ruth Macklin discusses in Enemies of Patients, an eye-opening look at the growing number of forces that are hostile to the interests of patients, including hospital administrators, lawyers who represent hospitals, insurance companies, government regulations, and even some well intentioned physicians. Macklin, a highly regarded medical ethicist, the author of Mortal Choices and the subject of a New York Times Magazine cover story, provides a behind-the-scenes look at how the patient's ethical rights are often violated. She describes, for instance, how a new breed of hospital administrator, the risk manager, acts consistently as an enemy of the patient, often urging physicians to continue aggressive, expensive treatments for critically ill patients--even when the patient and doctor agree the treatment should cease--for fear of lawsuits, bad publicity, or criminal indictment. (Macklin points out, for instance, that even though no physician has ever been convicted of a crime for withdrawing treatment from a patient in a permanent vegetative state, hospital lawyers and risk managers regularly assert that there is a danger of criminal liability in such cases.) The government also can become an enemy of patients. The most egregious case, according to Macklin, is the Federal government's "gag rule" which has prohibited health care facilities that receive Title X funds from discussing abortion with pregnant women, violating the patient's right to full information. And physicians themselves can become enemies of patients. Some, seeing themselves as fiscal gatekeepers, ration expensive health care procedures on financial rather than medical grounds. Some physicians refuse to treat patients who don't follow their advice (a cardiologist, for instance, who will not take care of patients who smoke) and others won't treat patients who pose a threat of lawsuit (such as a California woman in need of life-sustaining dialysis, who had previously sued another physician). Packed with numerous case histories drawn from the author's experience in a major urban medical center, Enemies of Patients will give readers a better understanding of their rights as patients and show them how to forge an alliance with their doctors against common enemies. (shrink)

The Institute of Medicine has called on health care leaders to transform their health systems into “learning health care systems,” capable of studying and continuously improving their practices. Learning health care systems commit to carrying out numerous kinds of investigations, ranging from clinical effectiveness studies to quality improvement research and implementation science. There has been progress in realizing the IOM's vision, but also many challenges. One of these challenges has been lingering uncertainty about whether the data collection (...) and monitoring central to learning health care systems is actually research and if so, what kind of ethical oversight it should have. This is not a new question. Yet so far, there has been no foundational analysis of the fit between the existing human subjects protection framework in use in the United States and the new kinds of data collection activities that are being, and increasingly will be, undertaken by learning health care systems. Two companion feature articles in this volume, by a team at Johns Hopkins, fill this void. (shrink)

This paper explores the relationship between temporal continuity in nursing and temporal features of sickness. It is based on phenomenological and hermeneutical philosophy, empirical studies of sickness time, and the nursing theories of Nightingale, of Benner and of Benner and Wrubel. In the first part, temporal continuity is defined as distinct from interpersonal continuity. Tensions between temporal continuity and discontinuity are discussed in the contexts of care management, of conceptualisations of disease and of time itself. (...) Temporal limitations to the methodological concept of situation are discussed. The main part of this paper explores nurses' possibilities to relate to their patients' time, and how temporal features of sickness may warrant temporal continuity of nursing. Three temporal characteristics of sickness are discussed: the immediacy of patients' suffering, the basic continuity of life through sickness and health care, and the indeterminism and precariousness of sickness. The timing of nursing acts is discussed. The paper explores how sickness is both part of the continuity of life, and threatens this continuity. It concludes that this tension is implicitly recognised in the temporal continuity of nursing, which allows for discontinuous and continuous aspects of sickness time. Nurses accordingly perceive the sick person's time at several levels of temporality, and distinguish highly complex temporal processes in their patients' trajectory. Temporal continuity provides the time, flexibility, and closeness for nurses to perceive and act into time dimensions of individual sickness. The paper shows that temporal continuity of nursing is grounded in temporal characteristics of severe sickness. It suggests that temporal continuity is an important theoretical concept in nursing. (shrink)

The recent confirmation of the constitutionality of the Obama administration’s Patient Protection and Affordable Care Act (PPACA) by the US Supreme Court has brought to the fore long-standing debates over individual liberty and religious freedom. Advocates of personal liberty are often critical, particularly in the USA, of public health measures which they deem to be overly restrictive of personal choice. In addition to the alleged restrictions of individual freedom of choice when it comes to the question of whether (...) or not to purchase health insurance, opponents to the PPACA also argue that certain requirements of the Act violate the right to freedom of conscience by mandating support for services deemed immoral by religious groups. These issues continue the long running debate surrounding the demands of religious groups for special consideration in the realm of health care provision. In this paper I examine the requirements of the PPACA, and the impacts that religious, and other ideological, exemptions can have on public health, and argue that the exemptions provided for by the PPACA do not in fact impose unreasonable restrictions on religious freedom, but rather concede too much and in so doing endanger public health and some important individual liberties. (shrink)

Patient advocacy has been a topic of much discussion in the nursing literature for a number of decades. Ambiguities remain, however, concerning definitions of advocacy in nursing. This qualitative grounded theory-type study aimed to inquire into the meaning of patient advocacy from Iranian nurses' perspective. A purposive sample of 24 nurses (staff nurses, head nurses and supervisors) working in a large university hospital in Tehran was used. Data were collected using in-depth semistructured interviews and reflective diaries kept by (...) the participants. The data were analyzed using elements of Strauss and Corbin's' approach. Advocacy was defined by the participants as: informing and educating; valuing and respecting; supporting; protecting; and promoting continuity of care for patients. The participants also believed that advocacy could take place only if there was respect for patients' individuality and their inherent human dignity. Many of the descriptions given by the participants are consistent with previous research in this area and represent a comprehensive account of their perceptions of patient advocacy. (shrink)

Background: Compassion is the core of nursing care and the basis of ethical codes. Due to the complex and abstract nature of this concept, there is a need for further investigations to explore the meaning and identify compassionate nursing care. Objectives: The purpose of this study was to identify and describe compassionate nursing care based on the experiences of nurses, patients, and family caregivers. Research design: This was a qualitative exploratory study. Data were analyzed using the conventional (...) content analysis method. Participants and research context: Nurses, hospitalized patients, and family caregivers in different educational hospitals in an urban area of Iran were selected from February 2016 to December 2017 using a purposeful sampling method. In-depth and semi-structured interviews, focus group interviews, and field notes were used for data collection. Ethical considerations: The study was approved by the University’s Ethics Committee. The participants were informed about the aim and method of the study, reasons for recording the interviews, confidentiality of data, and voluntary nature of participation in this study. Findings: Data from interviews and filed notes were analyzed and classified into three themes: “effective interaction,” “professionalism,” and “continuous comprehensive care.” Discussion and conclusion: Emerged themes of this study involved holistic care in the current literature on nursing with an emphasis on effective interaction and professionalism. Nurses can understand patients’ and family caregivers’ comprehensive needs through interaction skills. In addition, clinical proficiency, maintaining professional ethics’ standards along with holism, and continuity in care are examples of compassionate care. Education program about compassionate care can enhance the quality of nursing care. (shrink)

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

The present article focuses on the case of the 2012 hunger-strike of Palestinian prisoners in Israeli jails. We analyze the ethical dilemma involved in the way the Israeli medical community reacted to these hunger-strikes and the question of force feeding within the context of the fundamental dual-loyalty structure inherent in the Israeli Prison Services—system. We argue that the liberal perspective that focuses the discussion on the dilemma between the principle of individual autonomy and the sanctity of life tends to be (...) oblivious to the asymmetrical relation of power that characterizes the prison system and to the socio-political context in which hunger-strikes take place. Emphasizing hunger-strikes as political acts implies that health practitioners’ conducts cannot be analyzed only through the prism of clinical medical ethics. It requires a public health ethics’ approach, an approach that understands health in the context of the complex relationship between society, state, organizations, communities and individuals. The authors are both academics and volunteers in Physicians for Human Rights—Israel thus our analysis is based both on sociological and public health ethics principles and on the continuous work and advocacy for the right to health of prisoners. (shrink)

The conventional wisdom is that managed care's brief life is over and we are now in a post-managed care era. In fact, managed care has a long history and continues to thrive. Writers also often assume that managed care is a fixed thing. They overlook that managed care has evolved and neglect to examine the role that it plays in the health system. Furthermore, private actors and the state have used managed care tools to (...) promote diverse goals. These include the following: increasing access to medical care; restricting physician entrepreneurialism; challenging professional control over the medical economy; curbing medical spending; managing medical practice and markets; furthering the growth of medical markets and private insurance; promoting for-profit medical facilities and insurers; earning bounties for reducing medical expenditures: and reducing governmental responsibility for, and oversight of, medical care. Struggles over these competing goals spurred the metamorphosis of managed care. This article explores how managed care transformed physicians' conflicts of interests and responses to them. It also examines how managed care altered the opportunities for patients/medical consumers to use exit and voice to spur change. (shrink)

Intensive care units are not always able to admit all patients who would benefit from intensive care. Pressure on ICU beds is likely to be particularly high during times of epidemics such as might arise in the case of swine influenza. In making choices as to which patients to admit, the key US guidelines state that significant priority should be given to the interests of patients who are already in the ICU over the interests of patients who would (...) benefit from intensive care but who have not been admitted. We examine four reasons that in principle might justify such a prioritization rule and conclude that none is convincing. We argue that the current location of patients should not, in principle, affect their priority for intensive care. We show, however, that under some but not all circumstances, maximizing lives saved by intensive care might require continuing to treat in the ICU a patient already admitted rather than transferring that patient out of the unit in order to admit a sicker patient who would also benefit more from intensive care. We conclude that further modelling is required in order to clarify what practical policies would maximize lives saved by intensive care. (shrink)

Recently adopted health care practices and policies describe themselves as “patient-centered care.” The meaning of the term, however, remains contested and obscure. This paper offers a typology of “patient-centered care” models that aims to contribute to greater clarity about, continuing discussion of, and further advances in patient-centered care. The paper imposes an original analytic framework on extensive material covering mostly US health care and health policy topics over several decades. It finds that (...) four models of patient-centered care emphasize: patients versus their parts; patients versus providers; patients/providers/states versus “the system”; and patients and providers as persons. Each type is distinguishable along three dimensions: epistemological orientations, practical accommodations, and policy tools. Based on this analysis, the paper recommends that four questions be asked of any proposal that claims to provide patient-centered care: Is this care a means to an end or an end in itself? Are patients here subjects or objects? Are patients here individuals or aggregates? How do we know what patients want and need? The typology reveals that models are neither entirely compatible nor entirely incompatible and may be usefully combined in certain practices and policies. In other instances, internal contradictions may jeopardize the realization of coherent patient-centered care. (shrink)

With increasing use of ethics resources by health care teams, the number of patients transferred from one care setting to another who may have had ethics consultations is rising rapidly. There has been virtually no discussion in the ethics literature and no experience in our community addressing questions concerning the continuity of ethics care and the transfer of ethics information. Our ethics committee faced the following questions during a recent consultation. Should there be continuity of (...) ethics care between institutions? If so, what should be the nature of the communication? How is continuity best accomplished? Do ethics consultants or committees incur additional liability following the transfer of care? Where should the boundaries of confidentiality be drawn? How can existing health care ethics networks facilitate continuity of ethics care?We address these ethical and logistical questions and hope to encourage others to report their views on these issues. (shrink)

Studies on end-of-life care reveal different practices regarding withholding and/or withdrawing life-sustaining treatments between countries and regions. Available data about physicians’ practices regarding end-of-life care in ICUs in Egypt is scarce. This study aimed to investigate physicians’ attitudes toward end-of-life care and the reported practice in adult ICUs in Ain Shams University Hospitals, Cairo, Egypt. 100 physicians currently working in several ICU settings in Ain Shams University Hospitals were included. A self-administered questionnaire was used for collection of (...) data. Most of the participants agreed to implementation of “do not resuscitate” orders and applying pre-written DNR orders, while only 13% almost always/often order DNR for terminally-ill patients. 52% of the participants agreed to usefulness of limiting life-sustaining therapy in some cases, but they expressed fear of legal consequences. 47% found withholding life-sustaining treatment is more ethical than its withdrawal. 16% almost always/often withheld further active treatment but continued current ones while only 6% almost always/often withdrew active therapy for terminally-ill patients. The absence of legislation and guidelines for end-of-life care in ICUs at Ain Shams University Hospitals was the main influential factor for the dissociation between participants’ attitudes and their practices. Therefore, development of a consensus for end-of-life care in ICUs in Egypt is mandatory. Also, training of physicians in ICUs on effective communication with patients’ families and surrogates is important for planning of limitation of life-sustaining treatments. (shrink)

The duty to provide care is foundational to the nursing profession and the work of nurses. Unfortunately, violence against nurses at the hands of recipients of care is increasingly common. While employers, labor unions, and professional associations decry the phenomenon, the decision to withdraw care, even from someone who is violent or abusive, is never easy. The scant guidance that exists suggests that the duty to care continues until the risk of harm to the nurse is (...) unreasonable, however, “reasonableness” remains undefined in the literature. In this paper, I suggest that reasonable risk, and the resulting strength of the duty to provide care in situations where violence is present, hinge on the vulnerability of both nurse and recipient of care. For the recipient, vulnerability increases with the level of dependency and incapacity. For the nurse, vulnerability is related to the risk and implications of injury. The complex interplay of contextual vulnerabilities determines whether the risk a nurse faces at the hands of a violent patient is reasonable or unreasonable. This examination will enhance our understanding of professional responsibilities and can help to clarify the strengths and limitations of the nurse's duty to care. (shrink)

The passage of the Patient Protection and Affordable Care Act in March 2010 represents a significant turning point in the evolution of health care law and policy in the United States. By establishing a legal infrastructure that seeks to achieve universal health insurance coverage in the United States, the ACA targets some of the major impediments to accessing needed health care for millions of Americans and by extension attempts to strengthen the health system to support key (...) determinants of health. Yet, like many newly passed legislative provisions, the ultimate effects and significance of the ACA remain uncertain. Those charged with implementing the ACA face formidable obstacles — indeed, some of the same obstacles that have been erected to impede other major pieces of social legislation in the past — including entrenched political opposition, constitutional challenges, and what will likely be a prolonged struggle over the content and direction of how the law is implemented. As these debates continue, it is nevertheless important to begin to assess the impact that the ACA has already had on health law in the United States and to consider the likely effects that the law will have on public health going forward. (shrink)

Introduction Numerous guidelines and policies for ethical research practice have evolved over time, how this translates to global health practice in resource-constrained settings is unclear. The purpose of this paper is to describe how the concept of ancillary care has evolved over time and how it is included in the ethics guidelines and policy documents that guide the conduct of research in the global south with both an international focus and providing a specific example of Malawi, where the first (...) author lives and works, as a case study. Methods Discourse analysis was conducted on 34 international ethics guidelines and policy documents. Documents were purposively selected if they contained a set of key terms that reflect the concept of ancillary care. Following a process of inductive discourse analysis, five key interrelated text phrases relating to ancillary care were extracted from the documents. The evolution of these phrases over time was explored as they represented the development of the concept of ancillary care as a component of ethical health research guidance and practice. Results We found key interrelated phrases that represent discourses regarding the evolution of ancillary care including participant protection; provide care as appropriate; supererogation; patient needs prevail over science; and ancillary care as an obligation. Arguments for the provision of ancillary care were characterised by safeguarding the safety, health rights and well-being of study participants. However, despite the evolution of discourse around ethical obligations to provide ancillary care, this is rarely made explicit within guidance documents, leaving interpretive space for differential application in practice. Conclusion While there have been major changes to the ethics guidance that reflect significant evolution in the ethical conduct of research, the specific vocabulary or language used to explain the ethics of researchers' ancillary care obligations to the health needs of their research participants, lacks clarity and consistency. As a result, the concept of ancillary care continues to be under-represented in local ethical guidelines and regulations, with no clear directives for country-level research ethics committees to apply in regulating ancillary care responsibilities. (shrink)

An increasing recognition over the past five decades of the importance of patients’ autonomy and the right to be able to choose to limit medical treatment at the end of life has led to the development of a number of documents related to advance care planning, including the advance directive, medical power of attorney, and portable orders for life-sustaining treatment (POLST). While these documents are important aspects of advance care planning, without having goals-ofcare conversations, a specific plan, and (...) necessary supports to achieve these goals, the documents alone offer a false promise. Healthcare professionals must be trained on how to have indepth goals-of-care conversations with patients and their families, and effectively document the decisions. Advance care planning needs to be viewed as a process that must continue as the patient’s health status, social support system, and living environment change. Designating a healthcare representative who participates in goals-of-care conversations and can work with the healthcare team to make “just in time” decisions about care reduces the burden and stress on friends and family. In this article we discuss the strengths and limitations of advance directives, medical power of attorney forms, and POLST forms; propose concrete changes to optimize the effectiveness of each; and present a comprehensive approach to advance care planning that we hope will improve care for those nearing the end of life, and ensure that their wishes and goals to have or to limit treatment are more consistently honored. (shrink)

Background Thirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area. Aim The aim of this study was to explore palliative care physicians’ experiences of ethical challenges in relation to thirst in terminally ill patients. Methods (...) A qualitative interview study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. Results When presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patient’s autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering. Conclusions All physicians in this study reported that “Starting, continuing or discontinuing drips” was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular. (shrink)

Growing data on the socioeconomic determinants of health pose a challenge to analysis and application of fairness in health. In Just health: meeting health needs fairly, Norman Daniels argues for a change in the population end of our thinking about just health. What about clinical care? Given our knowledge of the importance of wealth, education or social status to health, is fairness in medicine served better by continuing to avoid considering our patients’ social status in setting clinical priorities, or (...) by attempting to equalise existing health inequalities by giving priority to the socioeconomically disadvantaged at the point of care? In this article, I argue that doctors should not attempt the latter. Granted, giving priority to low status would go some way towards compensating unjust health inequalities and the impression of being left aside in other social spaces. It would represent reverse discrimination, but could still be justified inasmuch as disadvantaged groups could be identifiable, and as long as the intent was compensation rather than retribution. However, under current circumstances such priority would risk being attributed arbitrarily, would represent a form of medical proselytising, risk leaving the worst-off with less by alienating the powerful, and require teaching doctors to act in strongly counter-cultural ways—possibly at great cost. Crucially, however, we protect both equal health and equal regard by treating all alike: priority to low status would promote the first somewhat, but at the expense of sacrificing the second. (shrink)

The harmful impact of an adverse event ripples beyond injured patients and their families to affect physicians, nurses, and other health care staff that are involved. These “Second Victims” may experience intense feelings of anxiety, guilt, and fear. They may doubt their clinical competence or ability to continue working at all. Some go on to suffer post-traumatic stress disorder and depression.Medical institutions long ignored this problem, preferring to believe that adverse events, or “errors,” occur due to incompetence — the (...) unfortunate work of a few “bad” practitioners who deserve, if anything, a reprimand for their negligence. Study after study has rejected this attribution and shown that adverse events in health care stem primarily from systemic flaws, not “bad apples.” Devastating errors, in other words, can, do, and always will happen in the care of competent, well-trained, and caring practitioners. (shrink)

In this article we will be arguing in favour of legislating to protect doctors who bring about the deaths of PVS patients, regardless of whether the death is through passive means or active means. We will first discuss the ethical dilemmas doctors and lawmakers faced in the more famous PVS cases arising in the US and UK, before exploring what the law should be regarding such patients, particularly in Australia. We will continue by arguing in favour of allowing euthanasia in (...) the interests of PVS patients, their families, and finally the wider community, before concluding with some suggestions for how these ethical arguments could be transformed into a set of guidelines for medical practice in this area. (shrink)

Conscience-based refusals by health care professionals to provide care to eligible patients are problematic, given the monopoly such professionals hold on the provision of such services. This article reviews standard ethical arguments in support of conscientious refuser accommodation and finds them wanting. It discusses proposed compromise solutions involving efforts aimed at testing the genuineness and reasonability of refusals and rejects those solutions too. A number of jurisdictions have introduced policies requiring conscientious refusers to provide effective referrals. These policies (...) have turned out to be unworkable. They subject patients to a health care delivery lottery, which is incompatible with the fundamental values of medical professionalism. This paper sheds light on transnational efforts aimed at undermining progress made in reproductive health by means of conscientious refusal accommodation claims. The view that the accommodation of conscientious refusers is indefensible on consequentialist ethical grounds, as well as on grounds related to medical professionalism itself, is defended. (shrink)

BackgroundBurn patients are among the most vulnerable groups of patients requiring principled ethical care. Caring for these patients often brings various ethical challenges for the members of the health care teams, especially nurses, which affect the clinical decisions made for these patients. A limited number of studies have addressed the ethical challenges of caring for burn patients for the responsible caregivers, so the present study attempted to identify these challenges. The present study aimed to explore the health professionals' (...) experiences of the ethical challenges during caring for burn patients.MethodsThis was a qualitative study with a descriptive, phenomenological design. 22 health professional practiced in public burn centers in Iran who met the inclusion criteria of the study were selected via purposeful sampling to participate in the study from June to August 2019. Data were collected using semi-structured, in-depth interviews with the individuals as well as field notes. Sampling was continued up to the data saturation. Thereafter, the collected data were analyzed using Colaizzi's method.ResultsThe findings of the study yielded 3 themes, including respect for the patient's privacy, respect for the patient's personal identity, and care challenges, as well as 9 categories.ConclusionThe findings of this study showed that the burn patients’ caregivers face some challenges in the domains of maintaining the patient's privacy, respecting the patient’s personal identity, and making the best clinical decision. Thus, providing the cultural, professional, and organizational requirements of meeting the challenges of caring for burn patients can consequently result in the caregivers’ inner peace and the improved performance. (shrink)

Background and Aims The prevalence of religious faith among doctors and its relationship with decision-making in end-of-life care is not well documented. The impact of ethnic differences on this is also poorly understood. This study compares ethnicity and religious faith in the medical and general UK populations, and reports on their associations with ethically controversial decisions taken when providing care to dying patients. Method A postal survey of 3733 UK medical practitioners, of whom 2923 reported on the (...) class='Hi'>care of their last patient who died. Findings Specialists in care of the elderly were somewhat more likely to be Hindu or Muslim than other doctors; palliative care specialists were somewhat more likely to be Christian, religious and ‘white’ than others. Ethnicity was largely unrelated to rates of reporting ethically controversial decisions. Independently of speciality, doctors who described themselves as non-religious were more likely than others to report having given continuous deep sedation until death, having taken decisions they expected or partly intended to end life, and to have discussed these decisions with patients judged to have the capacity to participate in discussions. Speciality was independently related to wide variations in the reporting of decisions taken with some intent to end life, with doctors in ‘other hospital’ specialities being almost 10 times as likely to report this when compared with palliative medicine specialists, regardless of religious faith. Conclusions Greater acknowledgement of the relationship of doctors' values with clinical decision-making is advocated. (shrink)

The dominant discourse in chronic disease management centres on the ideal of person-centred healthcare, with an empowered patient taking an active role in decision-making with their healthcare provider. Despite these encouraging developments toward healthcare democracy, many person-centred conceptions of healthcare and programming continue to focus on the healthcare institution’s perspective and priorities. In these debates, the patient’s voice has largely been absent. This article takes the example of patient empowerment to show how the concept has been influenced (...) by a variety of competing and shifting influences that have led to conceptualisations and programming designed for the patient, but developed without the patient. The framework of epistemic injustice is proposed to unravel the complexity of these omissions. The concept can be defined as a wrong done to someone specifically in their capacity as a knower. It occurs when a person is ignored or not believed due to a prejudice of some kind. It has been applied to healthcare in order to better understand barriers for patient participation and will be used to better understand the problems with current empowerment definitions and implementation strategies. The article will end by proposing some methodologies to facilitate patient-developed concepts of empowerment. (shrink)

Health care organization is entering a new age. Focus is increasingly shifting from individual health care institutions to interorganizational collaboration and health care networks. Much hope is set on such networks which have been argued to improve economic efficiency and quality of care. However, this does not automatically mean they are always ethically justified. A relevant question that remains is what ethical obligations or duties one can ascribe to these networks especially because networks involve many risks. (...) Due to their often amorphous and complex structure, collective responsibility and accountability may increase while individual responsibility goes down. We argue that a business ethics approach to ethical obligations for health care networks, is problematic and we propose to opt for a patient perspective. Using the classic four principles of biomedical ethics it is possible to identify specific ethical duties. Based on the principle of justice, health care networks have an ethical duty to provide just and fair access for all patients and to be transparent to patients about how access is regulated. The principle of nonmaleficence implies an obligation to guarantee patient safety, whereas the principle of beneficence implies an obligation for health care networks to guarantee continuity of care in all its dimensions. Finally, the principle of autonomy is translated into a specific obligation to promote and respect patient choice. Networks that fail to meet any of these conditions are suspect and cannot be justified ethically. Faced with daunting challenges, the health care system is changing rapidly. Currently many hopes ride on integrated care and broad health care networks. Such networks are the topic of empirical debate, but more attention should be given to the ethical aspects. Health care networks raise new and pressing ethical issues and we are in need of a framework for assessing how and when such networks are justified. (shrink)

Hospital-dependent patients are individuals who are repeatedly readmitted to the hospital because their acute medical needs cannot be met elsewhere. Unlike the chronically critically ill, these patients do not have a continuous need for life-sustaining equipment and can experience periods of relative stability where they have a good quality of life. However, some end up spending months or even years in the hospital receiving resource-intensive care because they are unable to be safely discharged, despite an initial optimistic prognosis. It (...) is hard to reliably identify these patients on admission and more research is needed to better understand the unique medical needs of this population. But the inability to safely discharge these patients to their home or to a skilled nursing facility without rapid readmissions also creates ethical implications for the physicians who care for them. The aim of this paper is to clarify some of the ethical considerations involved in caring for hospital-dependent patients. Among physicians, the care of hospital-dependent patients is likely to disproportionately affect hospitalists and intensivists, whose care is often evaluated in terms of reducing patient length of stay and readmissions. Because hospital-dependent patients’ medical needs thwart the traditional goal of safe discharge, both clinical ethics and physicians’ professional obligations are implicated by their care. The inability to reliably identify these patients early can complicate discussions about treatment goals and informed consent. Similarly, the tremendous dedication of limited resources to these patients without safe discharge back to the community may raise concerns about the just allocation of healthcare resources. Our current acute care hospitals are not designed to provide long-term care for hospital-dependent patients. Unfortunately, safe discharge options remain elusive for these patients. Further research and support of this population is needed to more reliably identify hospital-dependent patients on admission, better inform the discussions of short- and long-term treatment goals, and more wisely allocate resources both within our acute care hospitals and larger healthcare system. (shrink)

Background Hospital-dependent patients are individuals who are repeatedly readmitted to the hospital because their acute medical needs cannot be met elsewhere. Unlike the chronically critically ill, these patients do not have a continuous need for life-sustaining equipment and can experience periods of relative stability where they have a good quality of life. However, some end up spending months or even years in the hospital receiving resource-intensive care because they are unable to be safely discharged, despite an initial optimistic prognosis. (...) It is hard to reliably identify these patients on admission and more research is needed to better understand the unique medical needs of this population. But the inability to safely discharge these patients to their home or to a skilled nursing facility without rapid readmissions also creates ethical implications for the physicians who care for them. The aim of this paper is to clarify some of the ethical considerations involved in caring for hospital-dependent patients. Main body Among physicians, the care of hospital-dependent patients is likely to disproportionately affect hospitalists and intensivists, whose care is often evaluated in terms of reducing patient length of stay and readmissions. Because hospital-dependent patients’ medical needs thwart the traditional goal of safe discharge, both clinical ethics and physicians’ professional obligations are implicated by their care. The inability to reliably identify these patients early can complicate discussions about treatment goals and informed consent. Similarly, the tremendous dedication of limited resources to these patients without safe discharge back to the community may raise concerns about the just allocation of healthcare resources. Conclusion Our current acute care hospitals are not designed to provide long-term care for hospital-dependent patients. Unfortunately, safe discharge options remain elusive for these patients. Further research and support of this population is needed to more reliably identify hospital-dependent patients on admission, better inform the discussions of short- and long-term treatment goals, and more wisely allocate resources both within our acute care hospitals and larger healthcare system. (shrink)

Abstract This article explores interview data from a study of 50 Norwegian generalist nurses' focus group accounts of caring for dying patients in the hospital and care home. An eclectic discourse analytic approach was applied to nurses' accounts of the patient and three discursive contexts of reference to the patient were identified: the 'taken as read' patient, the patient paired with particular characteristics and the patient as psychologically present. Talk about the patient falls (...) mainly into the first two contexts, which position the patient in relation to three closely related discursive processes: individualization, anonymization and objectification. The third context presents the patient as a person with a particular identity. The analysis is discussed in a broader philosophical and sociological context in which we return to some of the theoretical work on death and dying of the 1990s and the topic of sequestration. We suggest that nurses' talk about the patient can be heard to participate in a continuing sequestration of the dying patient in healthcare institutions focused on 'result-oriented' care. (shrink)

ObjectiveThis study aims to evaluate the effectiveness of the MotivAir program—a phone-based intervention based on Motivational Interviewing principles and techniques—in enhancing adherence to Continuous Positive Airway Pressure therapy among patients with Obstructive Sleep Apnea Syndrome.MethodsA multicenter randomized controlled trial design with random allocation at the level of the individual will be conducted to compare the impact of the experimental program with a control group receiving usual care only in improving selected clinical and psychological parameters in the patients. A minimum (...) sample of 80 participants will be recruited in each center according to the inclusion criteria. After the initial screening, participants will be randomly assigned to either the experimental group or the control condition. The program will last 180 days and will be delivered by a trained nurse. The impact of the MotivAir program on selected primary and secondary outcomes will be measured at baseline, and after 1-, 3-, and 6-month from CPAP initiation.DiscussionParticipants are expected to show an increased level of adherence to CPAP and to acquire the skills and self-confidence necessary to deal with the psychological consequences of their chronic condition. (shrink)

Objectives Medical futility at the end of life is a growing challenge to medicine. The goals of the authors were to elucidate how clinicians define futility, when they perceive life-sustaining treatment (LST) to be futile, how they communicate this situation and why LST is sometimes continued despite being recognised as futile. Methods The authors reviewed ethics case consultation protocols and conducted semi-structured interviews with 18 physicians and 11 nurses from adult intensive and palliative care units at a tertiary hospital (...) in Germany. The transcripts were subjected to qualitative content analysis. Results Futility was identified in the majority of case consultations. Interviewees associated futility with the failure to achieve goals of care that offer a benefit to the patient's quality of life and are proportionate to the risks, harms and costs. Prototypic examples mentioned are situations of irreversible dependence on LST, advanced metastatic malignancies and extensive brain injury. Participants agreed that futility should be assessed by physicians after consultation with the care team. Intensivists favoured an indirect and stepwise disclosure of the prognosis. Palliative care clinicians focused on a candid and empathetic information strategy. The reasons for continuing futile LST are primarily emotional, such as guilt, grief, fear of legal consequences and concerns about the family's reaction. Other obstacles are organisational routines, insufficient legal and palliative knowledge and treatment requests by patients or families. Conclusion Managing futility could be improved by communication training, knowledge transfer, organisational improvements and emotional and ethical support systems. The authors propose an algorithm for end-of-life decision making focusing on goals of treatment. (shrink)

Objective: Contemporary ethical accounts of the patient-provider relationship emphasise respect for patient autonomy and shared decision making. We sought to examine the relative influence of involvement in decisions, confidence and trust in providers, and treatment with respect and dignity on patients’ evaluations of their hospital care.Design: Cross-sectional survey.Setting: Fifty one hospitals in Massachusetts.Participants: Stratified random sample of adults discharged from a medical, surgical, or maternity hospitalisation between January and March, 1998. Twelve thousand six hundred and eighty survey (...) recipients responded.Main outcome measure: Respondent would definitely be willing to recommend the hospital to family and friends.Results: In a logistic regression analysis, treatment with respect and dignity 3.4, 99% confidence interval 2.8 to 4.2) and confidence and trust in providers were more strongly associated with willingness to recommend than having enough involvement in decisions . Courtesy and availability of staff , continuity and transition , attention to physical comfort , and coordination of care were also significantly associated with willingness to recommend.Conclusions: Confidence and trust in providers and treatment with respect and dignity are more closely associated with patients’ overall evaluations of their hospitals than adequate involvement in decisions. These findings challenge a narrow emphasis on patient autonomy and shared decision making, while arguing for increased attention to trust and respect in ethical models of health care. (shrink)

Background: Neglect and abuse of elders in care institutions is a recurring issue in the media. Elders in care institutions are vulnerable due to their physical, cognitive, and verbal limitations. Such vulnerabilities may make them more susceptible to mistreatment by caregivers on whom they are heavily dependent. Objectives: The goal was to understand caregivers’ concerns about ensuring correct and proper treatment, as well as their experiences with neglect and abuse of older patients. This article examines resources and challenges (...) of professional ethics within the care setting. Research design: A study was conducted to explore the quality of care provided to older patients in nursing homes, geriatrics institutions, and ambulant care in the northwest region of Switzerland. Participants and research context: A total of 23 semi-structured interviews were conducted with nursing staff of varying experience levels. Ethical considerations: Ethical approval was granted by the competent regional ethics commission, Ethikkomission Nordwest-und Zentralschweiz EKNZ [Ethics Commission Northwest and Central Switzerland]. Findings: Three themes emerged from our data analysis: professional identity, professional context, and professional relationships. Our findings indicate mutual vulnerabilities within these three themes, characterizing the interactions between nursing staff and older patients. Study participants believe that incidences of error, neglect, and abuse are consequences of their own vulnerability since they are not able to meet the demands of an overstraining work situation. Discussion: Different aspects of this mutual vulnerability are described and critically discussed as challenges for professional ethics. Conclusion: Early education, continuous training as well as better management and response from the institution are necessary to maintain professionalism while handling mutual vulnerabilities. (shrink)

Background: For patients admitted to hospital both pastoral care and privacy or confidentiality are important. Rules related to each have come into conflict recently in the US. Federal laws and other rules protect confidentiality in ways that countermand hospitals’ methods for facilitating access to pastoral care. This leads to conflicts and poses an unusual type of dilemma—one of conflicting values and rights. As interests are elements necessary for establishing rights, it is important to explore patients’ interests in privacy (...) compared with their desire for attention from a cleric.Aim: To assess the willingness of patients to have their names and rooms included on a list by religion, having that information given to clergy without their consent, their sense of privacy violation if that were done and their views about patients’ privacy rights.Methods and participants: 179 patients, aged 18–92 years, admitted to hospital in an acute care setting, were interviewed and asked about their preferences for confidentiality and pastoral support.Results: Most patients did not want to be listed by religion; 58% did not think hospitals should give lists to clergy without their consent and 84% welcomed a visit by their own clergy even if triggered from a hospital list.Conclusions: Values related to confidentiality or privacy and pastoral care were found to be inconsistent and more complicated than expected. Balancing the right to privacy and the value of religious support continue to present a challenge for hospitals. Patients’ preferences support the importance of providing balance in a way that protects rights while offering comprehensive services. (shrink)

Objectives: To describe the concerns and priorities of key stakeholders in a developing country regarding ethical obligations held by researchers and perceptions of equity or “what is fair” for study participants in an HIV/AIDS clinical drug trial. Design: Qualitative study with focus groups. Setting: Teaching and referral hospital and rural health centre in western Kenya. Participants: Potential HIV/AIDS clinical trial participants, clinician researchers, and administrators. Results: Eighty nine individuals participated in a total of 11 focus groups over a four month (...) period. The desire for continued drug therapy, most often life long, following an HIV/AIDS clinical trial was the most common priority expressed in all focus groups. Patients with and without HIV/AIDS also thought subsidisation of drug therapies and education were critical forms of compensation for clinical trial participation. Financial incentives were considered important primarily for purchasing drug therapy as well as obtaining food. Patients noted a concern for the potential mismanagement of any money offered. Clinician researchers and administrators felt strongly that researchers have a moral obligation to participants following a trial to provide continued drug therapy, adverse event monitoring, and primary care. Finally, clinician researchers and administrators stressed the need for thorough informed consent to avoid coercion of study participants. Conclusions: Kenyan patients, clinician researchers, and administrators believe that it would be unfair to stop antiretroviral therapy following an HIV/AIDS clinical trial and that researchers have a long term obligation to participants. (shrink)

In this paper we aim to discuss a theoretical explanation for the positive relationship between patients’ knowledge and their trust in healthcare personnel. Our approach is based on John Dewey’s notion of continuity. This notion entails that the individual’s experiences are interpreted as interrelated to each other, and that knowledge is related to future experience, not merely a record of the past. Furthermore, we apply Niklas Luhmann’s theory on trust as a way of reducing complexity and enabling action. Anthony (...) Giddens’ description and analysis of the high modern society provides a frame for discussing the preconditions for patient-healthcare personnel interaction. High modernity is dominated by expert systems and demands trust in these. We conclude that patient knowledge and trust in healthcare personnel is related because both knowledge and trust are future- and action-oriented concepts. The traits of high modernity provides opportunities and challenges as the personnel can and must perform discretion. This discretion must be made in a context where knowledge is considered uncertain and preliminary. (shrink)

Rationing in healthcare remains very much a taboo topic. Before COVID-19, it rarely received public attention, even when it occurred in everyday practices, mainly in the form of implicit rationing, as it continues to do today. There are different definitions, types and levels of healthcare rationing, according to different perspectives. With the aim of contributing to a more coherent debate on such a highly emotional healthcare issue as rationing, here are provided a number of reflections from a patient advocate (...) perspective which are specifically focused on bedside rationing, the most troublesome level, both for patients and clinicians, particularly in regard to cancer care. Oncology, with its numerous expensive therapies and increasing number of patients, is undeniably one of the main areas contributing to the increase in healthcare costs. However, the fixed budgets of today's publicly financed health systems cannot allow unlimited access to the potentially beneficial treatments to all patients. Bedside rationing constitutes the last phase of many decision-making processes occurring at different interrelated levels (macro-levels), both inside and outside healthcare systems, which implicitly and inevitably result in a bottleneck determined by the upstream decisions themselves. Shifting from implicit to explicit bedside rationing essentially means moving from a paternalistic to a citizen-before-patient approach; this implies, first of all, a cultural change. Practical bedside rationing is an ethically complex topic, but one that needs to be urgently addressed in a transparent and open debate. In this scenario, the oncological community – patients, patient advocates and clinicians – can and should play an important role. (shrink)

Physicians, scholars, and policymakers continue to be concerned about conflicts of interests among health care providers. At least two main types of objections to conflicts of interest exist. Conflicts of interests may be intrinsically troublesome if they violate providers’ fiduciary duties to their patients or they contribute to loss of trust in health care professionals and the health care system. Conflicts of interest may also be problematic in practice if they bias the decisions made by providers, adversely (...) impacting patient outcomes or wastefully increasing health care costs. This latter objection may be observed in differences in the prescriptions written, procedures performed, or costs billed by health care professionals who have conflicting interests, when compared to those that do not have such financial relationships. (shrink)