It describes and explains the patient-centered model examining and evaluating qualitative and quantitative research. It comprehensively covers the evolution and the six interactive components of the patient-centered clinical method, taking the reader through the relationships between the patient and doctor and the patient and clinician. All the editors are professors in the Department of Family Medicine at the University of Western Ontario, London, Canada.

Despite recurring efforts, a gap exists across a variety of contexts between the protection of patients' safety in theory and in practice. This timely Research Handbook highlights these critical issues and suggests both legal and policy changes are necessary to better protect patients' safety. Multidisciplinary in nature, this Research Handbook features contributions from eminent academics, policy makers and medical practitioners from the Global North and South, discussing the essential facets concerning patient safety and the law. It highlights how (...) the role of legislation and case law has the potential to influence, both positively and negatively, medical practice and the quality of care. Chapters explore patient safety and the global health agenda; physiotherapy; 'non-therapeutic' clinical research with children; patient safety awareness in healthcare education; and the increasing use of robotics and artificial intelligence in healthcare. Outlining a wide range of international perspectives on patient safety and the law, this Research Handbook will appeal to academics and researchers specialising in health and medical law, human rights and healthcare regulation. It will also serve as a valuable resource for legal and medical practitioners alike, as well as clinicians and professionals working in healthcare governance. (shrink)

Although respect and human presence are frequently reported in nursing literature, these are poorly defined within a nursing context. The aim of this study was to examine the differences, if any, in the perceived frequency of respect and human presence in the clinical care, between nurses and patients. A convenience sample of 1537 patients and 1148 nurses from six European countries (Cyprus, Czech Republic, Finland, Greece, Hungary and Italy) participated in this study during autumn 2009. The six-point Likert-type (...) Caring Behaviours Inventory-24 questionnaire was used for gathering appropriate data. The findings showed statistically significant differences of nurses’ and patients’ perception of frequency on respect and human presence. These findings provide a better understanding of caring behaviours that convey respect and assurance of human presence to persons behind the patients and may contribute to close gaps in knowledge regarding patients’ expectations. (shrink)

The purpose of this study was to explore the challenges met by nursing staff in a rehabilitation ward. The overall design was qualitative: data were derived from focus interviews with groups of nurses and analyzed from a phenomenological-hermeneutic perspective. The main finding was that challenges emerge on two levels of ethics and rationality: an economic/administrative level and a level of care. An increase in work-load and the changing potential for patient rehabilitation influence the care that nurses can provide in rehabilitating (...) patients, and therefore also affect patients’ feelings of self-worth and dignity. Some patients wish to maintain their independence and autonomy, whereas others seem to ‘lose themselves’. Independence and autonomy are associated with dignity, but their lack is contrary to it. (shrink)

Being a patient and living a life -- Clinical space and traits of healing -- False starts and frequent failures -- Three journeys : A.'Ibuprofen and love', B. 'Staying tuned up', C. 'We all want the same things' -- Being a patient : the moral field -- Rethinking healthcare ethics : the patient's moral authority.

Systematically improving patient safety is of the utmost importance, but it is also an extremely complex and challenging task. This illuminating study evaluates the role of professionalism, regulation and law in seeking to improve safety, arguing that the 'medical dominance' model is ill-suited to this aim, which instead requires a patient-centred vision of professionalism. It brings together literatures on professions, regulation and trust, while examining the different legal mechanisms for responding to patient safety events. Oliver Quick includes an examination in (...) areas of law which have received little attention in this context, such as health and safety law, and coronial law, and contends in particular that the active involvement of patients in their own treatment is fundamental to ensuring their safety. (shrink)

The aim of this study was to obtain in-depth knowledge about caring confirmation of patients with cancer, from the patients’ point of view. The research topic was: what is the significance for patients of their being confirmed by nursing personnel? Fifteen men and women between 43 and 80 years of age participated in this study. The method of data collection used was qualitative research interviewing. A hermeneutic approach was used to interpret the data, in which Kvale’s self-perception, (...) the ‘common sense’ level, and theoretical levels were applied. The results are summarized in three areas: an outer confirmation, an inner confirmation, and a lack of the latter. Outer confirmation meant being understood and taken seriously; the maintenance of human dignity and worth indicated inner confirmation. A lack of inner confirmation is primarily manifest in terms of patients’ mental, spiritual and existential concerns. In relation to the theory of Eriksson, these patients were confirmed at the level of having and being, but seldom at the level of becoming. (shrink)

"Patient advocates can help make research more ethical, but advocacy raises ethical issues of its own.

Background:The concept of patient advocacy is still poorly understood and not clearly conceptualized. Therefore, there is a gap between the ideal of patient advocacy and the reality of practice. In order to increase nursing actions as a patient advocate, a comprehensive and clear definition of this concept is necessary.Research objective:This study aimed to offer a comprehensive and clear definition of patient advocacy.Research design:A total of 46 articles and 2 books published between 1850 and 2016 and related to the concept of (...) patient advocacy were selected from six databases and considered for concept analysis based on Rodgers’ evolutionary approach.Ethical considerations:This study was approved by the Research Ethics Committee of Tarbiat Modares University.Findings:The attributes of patient advocacy are safeguarding (track medical errors, and protecting patients from incompetency or misconduct of co-workers and other members of healthcare team), apprising (providing information about the patient’s diagnosis, treatment, and prognosis, suggesting alternatives of healthcare, and providing information about discharge program), valuing (maintaining self-control, enabling patients to make decisions freely, maintaining individualization and humanity, maintaining patient privacy, and acting in the patients’ values, culture, beliefs, and preferences), mediating (liaison between patients, families, and healthcare professionals, being patients’ voice, and communicate patient preferences and cultural values to members of the healthcare team), and championing social justice in the provision of healthcare (confronting inappropriate policies or rules in the healthcare system, identifying and correcting inequalities in delivery of health services, and facilitating access to community health services and health resources).Discussion and conclusion:The analysis of this concept can help to develop educational or managerial theories, design instruments for evaluating the performance of nurses in patient advocacy, develop strategies for enhancing patient advocacy, and improve the safety and quality of nursing care in the community and healthcare system. (shrink)

Patient centred diagnosis is best practised through shared decision making; an iterative dialogue between doctor and patient, whichrespects a patient’s needs, values, preferences, and circumstances. -/- Shared decision making for diagnostic situations differs fundamentally from that for treatment decisions. This has important implications when considering its practical application. -/- The nature of dialogue should be tailored to the specific diagnostic decision; scenarios with higher stakes or uncertainty usually require more detailed conversations.

The scarcity of resources during the COVID‐19 pandemic caused ethical dilemmas in prioritizing patients for treatment. Medical and ethical guidance only emphasizes clinical procedures but does not consider the sociocultural aspect. This study explored the perception of former COVID‐19 patients and their families on the decision‐making process of the patient's selection at a time of scarcity of resources. The result will inform the development of an ethical guide for allocating scarce resources that aligns with Indonesian culture. We conducted (...) qualitative research with in‐depth interviews between May ‐ December 2022 involving sixteen participants from various cities in Indonesia. We transcribed the interviews and analyzed the results using thematic analysis. This study found that doctor's decisions often differed from patient's expectations in allocating scarce resources, and therefore, it should be communicated appropriately. Medical decisions were not sufficiently made ethically, but must also be made communicatively. In Indonesia's strong communal culture, community involvement was essential to distributing limited resources. A better approach to ethical education, including adequate communication skills, is necessary to prepare health professionals for facing unpredictable future pandemics. (shrink)

Ethical foundations of patient safety -- Vigilance -- Mindfulness -- Compliance -- Humility -- Some theoretical aspects of vigilance and risk acceptability -- Fifty shades of error -- The standard care and medical malpractice law as an ethical achievement -- The present and the future.

This book is a collection of papers presented at an interdisciplinary workshop at the Calgary Institute for the Humanities in May 1980. The three broad issues covered are: the physician-patient relationship, the allocation of responsibility among doctors and nurses, and the political and social framework of the health care system. The first set of essays is concerned with the moral and legal aspects of the physician-patient relationship. The link between knowledge and power is examined as well as the moral dilemmas (...) posed by medical technology. These initial essays would alone justify this publ. (shrink)

Maintenance and promotion of patient dignity is an ethical responsibility of healthcare workers. The aim of this study was to investigate patient dignity and related factors in patients with heart failure. In this qualitative study, 22 patients with heart failure were chosen by purposive sampling and semi-structured interviews were conducted until data saturation. Factors related to patient dignity were divided into two main categories: patient/care index and resources. Intrapersonal features (inherent characteristics and individual beliefs) and interpersonal interactions (communication, (...) respect, enough information, privacy, and authority) were classified as components of the patient/care index category. Human resources (management and staff) and environmental resources (facilities and physical space) were classified as components of the resources category. The results will increase healthcare staff's understanding of patient dignity and its related factors, and provide information regarding the development of systems and processes that support patients in ways that are consistent with these values. (shrink)

'The Patient as Victim and Vector' is jointly written by four authors at the University of Utah with expertise in bioethics health law, and both clinical practice and public health policy concerning infectious disease.

Background:Since the adoption of the Universal Declaration of Human Rights by the United Nations in 1948, human rights as set out in government documents have gradually changed, with more and more power being transferred to individual.Objectives:The aim of this article is to analyze how the position of the patient in need of care is constructed in Norway’s renamed and revised Patients’ and Service Users’ Rights Act (originally Patients’ Rights Act, 1999) and published comments which accompanying this legislation from (...) the Norwegian Ministry of Health and Care Service.Research design:A constructivist design was used, and Fairclough’s critical discourse approach was adopted to analyze the text of the Patients’ and Service Users’ Rights Act and comments.Findings:The analysis identified three discourses: (a) political discourse, containing ethical discourses about priority and economy, in which patients are constructed as powerless individuals; (b) expert discourse, containing a theme about patients’ trust in the healthcare team and its knowledge, in which patients are constructed as helpless individuals lacking knowledge; and (c) patient participation and patient autonomy discourse, containing ethical discourses about decision-making, in which patients are constructed not only as individuals with needs and rights but also as “troublesome.”Conclusion:Dominant paternalistic discourses in the legal text validate the power of medicine, the healthcare system, and heath personnel over the needs, rights, participation, and autonomy of the patient. (shrink)

This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best interests of children. Such models of health (...) care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)

This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best interests of children. Such models of health (...) care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)

The art of interpretation has traditionally been an integral part of medical practice, but little attention has been devoted to its theory. Hermeneutics or the study of interpretation has grown as a methodological interest primarily within the humanities. Borrowing from the medieval fourfold sense of scripture, which organizes interpretive activity both logically and comprehensively, I propose a hermeneutical model of clinical decision-making. According to the model, a patient is analogous to a literary text which may be interpreted on four levels: (...) (1) the literal facts of the patient's body and the literal story told by the patient, (2) the diagnostic meaning of the literal data, (3) the praxis (prognosis and therapeutic decisions) emanating from the diagnosis, and (4) the change effected by the clinical encounter in both the patient's and clinician's life-worlds. The model is illustrated through application to a medical case. (shrink)

In this eye-opening look at the doctor-patient decision-making process, physician and law professor Jay Katz examines the time-honored belief in the virtue of silent care and patient compliance. Historically, the doctor-patient relationship has been based on a one-way trust -- despite recent judicial attempts to give patients a greater voice through the doctrine of informed consent. Katz criticizes doctors for encouraging patients to relinquish their autonomy, and demonstrates the detrimental effect their silence has on good patient care. Seeing (...) a growing need in this age of medical science and sophisticated technology for more honest and complete communication between physician and patients, he advocates a new, informed dialogue that respects the rights and needs of both sides. In a new foreword to this edition of The Silent World of Doctor and Patient , Alexander Morgan Capron outlines the changes in medical ethics practice that have occurred since the book was first published in 1984, paying particular attention to the hotly debated issues of physician-assisted suicide and informed consent in managed care. (shrink)

In 2022, an estimated 110,000 people died of an opioid-related drug overdose in the United States (Ahmad et al. 2024) primarily related to illicit fentanyl. However, fatal overdoses comprise only a...

Patient preference predictors (PPPs) promise to provide medical professionals with a new solution to the problem of making treatment decisions on behalf of incapacitated patients. I show that the use of PPPs faces a version of a normative problem familiar from legal scholarship: the problem of naked statistical evidence. I sketch two sorts of possible reply, vindicating and debunking, and suggest that our reply to the problem in the one domain ought to mirror our reply in the other. The (...) conclusion is thus conditional: if we think the problem of naked statistical evidence is a serious problem in the legal domain, then we should be concerned about the symmetrical problem for PPPs. (shrink)

Phenomenology gives rise to certain ontological considerations that have far-reaching implications for standard conceptions of patient autonomy in medical ethics, and, as a result, the obligations of and to patients in clinical decision-making contexts. One such consideration is the phenomenological reduction in classical phenomenology, a core feature of which is the characterisation of our primary experiences as immediately and inherently meaningful. This paper builds on and extends the analyses of the phenomenological reduction in the works of Husserl, Heidegger, and (...) Merleau-Ponty in order to identify and explain its implications for our current understanding of the principle of respect for patient autonomy and the norms of clinical decision making. (shrink)

BackgroundThe principles of informed consent, confidentiality and privacy are often neglected during patient care in developing countries. We assessed the degree to which doctors in Lahore adhere to these principles during outpatient consultations.Material & MethodThe study was conducted at medical out-patient departments (OPDs) of two tertiary care hospitals (one public and one private hospital) of Lahore, selected using multi-stage sampling. 93 patients were selected from each hospital. Doctors' adherence to the principles of informed consent, privacy and confidentiality was observed (...) through client flow analysis performed by trained personnel. Overall patient perception was also assessed regarding these practices and was compared with the assessment made by our data collectors.ResultsSome degree of informed consent was obtained from only 9.7% patients in the public hospital and 47.8% in the private hospital. 81.4% of patients in the public hospital and 88.4% in the private hospital were accorded at least some degree of privacy. Complete informational confidentiality was maintained only in 10.8% and 35.5% of cases in public & private hospitals respectively. Informed consent and confidentiality were better practiced in the private compared to the public hospital (two-sample t-test > 2, p value < 0.05). There was marked disparity between the patients' perspective of these ethical practices and the assessment of our trained data collectors.ConclusionObservance of medical ethics is inadequate in hospitals of Lahore. Doctors should be imparted formal training in medical ethics and national legislation on medical ethics is needed. Patients should be made aware of their rights to medical ethics. (shrink)

The general expectation that patients should be willing to trust nurses is rarely explored or challenged despite claims of diminishing public trust in social and professional institutions. Everyday meanings of trust take account of circumstance and suggest that our understanding of what it means to trust is contextually bound. However, in the context of health care, to trust implies a particular understanding which becomes apparent when abuses of this trust are reported and acknowledged as scandals. The predominant assumption in (...) the literature that trust is something that occurs between equally competent adults cannot explain trust in nursing precisely because of the unequal power relationships between patients on the one hand and healthcare professionals on the other. Moreover, the tendency to conflate terms such as trust, reliance, confidence and so on suggests that confusion permeates discussions of trust in nursing. In this paper, I argue in support of Annette Baier’s requirement of good will (or lack of ill will) as the essential feature of trust, and outline how this account (i) enables us to make the necessary distinctions between trust on the one hand and ‘trust pretenders’ on the other; and (ii) lays the foundations for understanding trust in relationships, such as those between patients and nurses, where power differentials exist. (shrink)

In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians. However, even in countries that (...) have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety. (shrink)

A lively topic of debate in decision theory over recent years concerns our understanding of the different risk attitudes exhibited by decision makers. There is ample evidence that risk-averse and risk-seeking behaviours are widespread, and a growing consensus that such behaviour is rationally permissible. In the context of clinical medicine, this matter is complicated by the fact that healthcare professionals must often make choices for the benefit of their patients, but the norms of rational choice are conventionally grounded in (...) a decision maker’s own desires, beliefs and actions. The presence of both doctor and patient raises the question of whose risk attitude matters for the choice at hand and what to do when these diverge. Must doctors make risky choices when treating risk-seeking patients? Ought they to be risk averse in general when choosing on behalf of others? In this paper, I will argue that healthcare professionals ought to adopt a deferential approach, whereby it is the risk attitude of the patient that matters in medical decision making. I will show how familiar arguments for widely held anti-paternalistic views about medicine can be straightforwardly extended to include not only patients’ evaluations of possible health states, but also their attitudes to risk. However, I will also show that this deferential view needs further refinement: patients’ higher-order attitudes towards their risk attitudes must be considered in order to avoid some counterexamples and to accommodate different views about what sort of attitudes risk attitudes actually are. (shrink)

In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians (‘open notes’). However, even in (...) countries that have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety. (shrink)

In contemporary bioethics, the autonomy of the patient has assumed considerable importance. Progressing from a more limited notion of informed consent, shared decision making calls upon patients to voice the desires and preferences of their authentic self, engaging in choice among alternatives as a way to exercise deeply held values. One influential opinion in Jewish bioethics holds that Jewish law, in contradistinction to secular bioethics, limits the patient's exercise of autonomy only in those instances in which treatment choices are (...) sensitive to preferences. Here, we analyze a discussion in the Mishna, a foundational text of rabbinic Judaism, regarding patient autonomy in the setting of religiously mandated fasting, and commentaries in the Babylonian and Palestinian Talmuds, finding both a more expansive notion of such autonomy and a potential metaphysical grounding for it in the importance of patient self-knowledge. (shrink)

The research into patient involvement is seldom concerned with the significance of cultural and structural factors. In this discussion paper, we illustrate our considerations on some of the challenges in implementing the ideal of patient involvement by showing how such factors take part in shaping the ways in which the intentions to involve patients are converted to practical interventions. The aim was to contribute to the approach dealing with contextual and structural factors of significance for patient involvement. With the (...) idea of “institutional logics,” borrowed from the Danish scholar, Erik Riiskjær, we first demonstrate, with examples from our own research, how patient involvement is interpreted differently within the different logics. Then, we show how the different interpretations of patient involvement meet and conflict in mutual competition as the ideals are sought to be converted to practical interventions. At last, we argue that an adequate theoretical model for the development in the future health care system should be expanded with a “patient logic.”. (shrink)

Theoretical models for patient-physician communication in clinical practice are frequently described in the literature. Respecting patient autonomy is an ethical problem the physician faces in a medical emergency situation. No theoretical physician-patient model seems to be ideal for solving the communication problem in clinical practice. Theoretical models can at best give guidance to behavior and judgement in emergency situations. In this article the premises of autonomous treatment decisions are discussed. Based on a case-report we discuss different genuine efforts the physician (...) can do to uncover treatment refusal and respect patient autonomy in an emergency situation. Autonomy requires competence and in emergency medicine time does not allow intimate exploration of patient competence and reasons for treatment refusal. We find that the physician must base her decision on a firm theoretical base combined with a practical and realistic view of the patient's situation on a case to case basis. (shrink)

Deep brain stimulation is an experimental procedure for treatment-resistant depression. Some results show promise, but blinded trials had limited success. Ethical questions center on vulnerability: especially on whether depressed patients can weigh the risks and benefits effectively, whether depression causes “desperation,” and whether media portrayals create unrealistic hopes. We interviewed 24 psychiatric inpatients with treatment-resistant depression, qualitatively analyzing their comments. Most had minimal interest in deep brain stimulators. Some might consider them if their depression worsened, if alternatives were exhausted, (...) or if the evidence were stronger. Fears focused on the surgery, adverse effects, and the novelty of the device. Patients felt the depression interfered with their ability to weigh the risks and benefits. Patients seemed highly attuned to the risks, and were skeptical that the treatment would be effective. We conclude that ethical concerns about vulnerability remain, yet patients with treatment-resistant depression were thoughtful and cautious about trying a novel therapy. (shrink)

It is common to distinguish moral rules, reasons, or values that are agent-relative from those that are agent-neutral. One can also distinguish moral rules, reasons, or values that are moment-relative from those that are moment-neutral. In this article, I introduce a third distinction that stands alongside these two distinctions—the distinction between moral rules, reasons, or values that are patient-relative and those that are patient-neutral. I then show how patient-relativity plays an important role in several moral theories, gives us a better (...) understanding of agent-relativity and moment-relativity, and provides a novel objection to Derek Parfit’s “appeal to full relativity” argument. (shrink)

Most of the papers presented at the worshop held at Calcutta.

Patient and public involvement (PPI) has gained widespread support in health research and health policy circles, but there is little consensus on the precise meaning or justifications of PPI. We argue that an important step towards clarifying the meaning and justification for PPI is to split apart the familiar acronym and draw a distinction between patient and public involvement. Specifically, we argue that patient involvement should refer to the practice of involving individuals in health research or policy on the basis (...) of their experience with a particular condition, while public involvement should refer to the practice of involving individuals in health policy or research based on their status as members of a relevant population. Analyzing cases from the UK, Australia, and the USA, we show how our proposed distinction can deliver much needed clarity to conversations on PPI, while guiding the development and evaluation of future PPI‐based policies. (shrink)

Competent patients’ refusals of nursing care do not yet have the legal or ethical standing of refusals of life-sustaining medical therapies such as mechanical ventilation or blood products. The case of a woman who refused turning and incontinence management owing to pain prompted us to examine these situations. We noted several special features: lack of paradigm cases, social taboo around unmanaged incontinence, the distinction between ordinary versus extraordinary care, and the moral distress experienced by nurses. We examined this case (...) on the merits and limitations of five well-known ethical positions: pure autonomy, conscientious objection, paternalism, communitarianism, and feminism. We found each lacking and argue for a ‘negotiated reliance’ response where nurses and others tread as lightly as possible on the patient’s autonomy while negotiating a compromise, but are obligated to match the patient’s sacrifice by extending themselves beyond their usual professional practice. (shrink)

The aim of this study is to explore how nurses perceive patient participations of patients over 75 years old undergoing hemodialysis treatment in dialysis units, and of their next of kin. Ten nurses told stories about what happened in the dialysis units. These stories were analyzed with critical discourse analysis. Three discursive practices are found: (1) the nurses’ power and control; (2) sharing power with the patient; and (3) transferring power to the next of kin. The first and the (...) predominant discursive practice can be explained with an ideology of paternalism, in which the nurses used biomedical explanations and the ethical principle of benefice to justify their actions. The second can be explained with an ideology of participation, in which the nurses used ethical narratives as a way to let the patients participate in the treatment. The third seemed to involve autonomous decision-making and the ethical principle of autonomy for the next of kin in the difficult end-of-life decisions. (shrink)

Respect and dignity are central to moral life, and have a particular importance in health care settings such as the intensive care unit (ICU). We conducted 15 semistructured interviews with 21 participants during an ICU admission to explore the definition of, and specific behaviors that demonstrate, respect and dignity during treatment in the ICU. We transcribed interviews and conducted thematic qualitative analysis. Seven themes emerged that focused on what it means to be treated with respect and/or dignity: treated as a (...) person; Golden Rule; acknowledgement; treated as family/friend; treated as an individual; treated as important/valuable; and treated as equal. Participants described particular behaviors or actions that were considered related to demonstrating treatment with respect and dignity: listening; honesty/giving information; attention to body/modesty/appearance; caring/bedside manner; patient and family as an information source; attention to pain; and responsiveness. These behaviors provide a framework for improving experiences with care in the ICU. (shrink)

According to Epicurus, philosophy’s sole task is to ensure the well-being of the soul. Human souls are often riddled with diseases; the most serious are the fear of the gods and the fear of death. Thus, the Epicureans offered several arguments designed to demonstrate that, for instance, “death is nothing to us,” and should therefore not be feared. Since their creation there has been much discussion, both in antiquity and by contemporary philosophers, about these arguments. In this thesis, I argue (...) that Epicurean philosophical arguments are patient-relative; they necessarily adapt themselves so as to be therapeutically effective for their intended audience. The end result is that when we evaluate Epicurean philosophical arguments, we must do so in light of the audience for whom they were intended. (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)

Various kinds of user and patient involvement are spreading in healthcare in most Western countries. The purpose of this study is to critically assess the actual conditions for patients’ involvement in healthcare practice in Greenland and to point to possibilities for development. Patients’ perspectives on their own conduct of everyday life with illness and their possibilities for participation when hospitalized are examined in relation to the conditions in a hospital setting dominated by biomedical practice. On a theoretical level, (...) it is argued that the concept of ‘participation’ is preferable to the concept ‘involvement’ in healthcare. The study shows that there are several interconnected areas for development: the structural frames of hospital practice, including professionals’ possibilities for handling patient participation, and the agency of the patients conducting their everyday lives when hospitalized. Consequences of the biomedical hegemony are discussed in relation to WHO ́s broader approach to disease, illness and health and the still existing postcolonial traces of power and hierarchy. Finally it is argued that patient participation during hospitalization will promote the patients ́ conduct of everyday life, the cultural knowledge of the professionals, and the democratization of the healthcare sector. Such changes might be connected to a more encompassing democratic societal development – in Greenland as well as globally. (shrink)

Patients with serious illnesses or injuries may decide to quit their medical treatment if they think paying the fees will put their families into destitution. Without treatment, it is likely that fatal outcomes will soon follow. We call this phenomenon “near-suicide”. This study attempted to explore this phenomenon by examining how the seriousness of the patient’s illness or injury and the subjective evaluation of the patient’s and family’s financial situation after paying treatment fees affect the final decision on the (...) treatment process. Bayesian Mindsponge Framework (BMF) analytics were employed to analyze a dataset of 1042 Vietnamese patients. We found that the more serious the illnesses or injuries of patients were, the more likely they were to choose to quit treatment if they perceived that paying the treatment fees heavily affected their families’ financial status. Particularly, only one in four patients with the most serious health issues who thought that continuing the treatment would push themselves and their families into destitution would decide to continue the treatment. Considering the information-filtering mechanism using subjective cost–benefit judgments, these patients likely chose the financial well-being and future of their family members over their individual suffering and inevitable death. Our study also demonstrates that mindsponge-based reasoning and BMF analytics can be effective in designing and processing health data for studying extreme psychosocial phenomena. Moreover, we suggest that policymakers implement and adjust their policies (e.g., health insurance) following scientific evidence to mitigate patients’ likelihood of making “near-suicide” decisions and improve social equality in the healthcare system. (shrink)

Background: Family therapy is considered as the gold standard in treatment of adolescents with anorexia nervosa (AN). Among the different types of family therapy, multi-family therapy (MFT) is increasingly used for treating AN, and shows promising results. In this article, our focus relied on the patients’ and their parents’ perceptions of the effectiveness and the underlying mechanisms of the MFT. Methods: The present pilot exploratory qualitative study included two focus groups conducted using a semi-structured approach: one with the adolescents (...) (n= 3), and another with one or two of their parents (n= 4 mothers;n= 2 fathers). The subjects discussed were the changes observed in both AN symptoms and family interactions following therapy, and the mechanisms underlying these changes. We crossed the perspectives of the adolescents and of the parents on these two points. Results: Qualitative analysis revealed that while both adolescents and parents had difficulties relating the changes they observed in the last year to MFT, they were able to say that the group cohesion had several positive effects and that their family dynamics had improved. In the light of analysis the adolescents perceived more improvements related eating disorders symptoms than their parents did, while parents were concerned about a negative effect of MFT on their children. Discussion: While both patients and parents perceived improvements in both AN symptoms and family interactions in the past year, it was not clear if they considered MFT to have led to these improvements. FG also explored the MFT mechanisms underlying changes. Both adolescents and their parents stressed the beneficial effects of identification to others members of the group and shared experience to overcome social isolation. Parents also mentioned the sympathy they felt for each other. The idea that they give a central place to families in the therapy was also described by the families. (shrink)

Health care has become increasingly patient-centred and medical guidelines are considered to be one of the instruments that contribute towards making it so. We reviewed the literature to identify studies on this subject. Both normative and empirical studies were analysed. Many studies recommend active patient participation in the process of guideline development as the instrument to make guidelines more patient-centred. This is done on the assumption that active patient participation will enhance the quality of the guidelines. We found no empirical (...) evidence, however, to support this assumption. Moreover, the studies show that patients experience several difficulties in the participation process, which cannot solely be traced back to flawed practices. Given this poor track record we conclude that the plea to actively involve patients in the guideline development process should be reconsidered. (shrink)