In lieu of an abstract, here is a brief excerpt of the content:Lisa’s StoryLisa P. (wife of patient) and Jeanne KerwinMy husband suffered from sudden onset of heart failure with a very low ejection fraction and was on IV Milrinone at the age of 47. One of the most powerful things he told me was that he was not afraid to die and therefore did not want to move forward with Milrinone. He eventually “did it for the kids.” After the (...) Milrinone drip was no longer working, he was offered an LVAD (left ventricular assist device) to keep him alive. He refused, but the doctor again convinced him to “do it for your kids” and said, “we put these devices in 80-year-olds.” He did not have time to explore any other options and reluctantly accepted the LVAD. It was implanted in May of 2014 in a very long and complicated surgery with a long and difficult recovery. He was in the hospital for a long time, and then he refused to go to rehab upon discharge, making it difficult for our family to manage, as he was extremely weak and needed care of his wound dressing. He worried about the financial [End Page 7] impact of a heart transplant and the medications required, as we were already struggling with the medical bills. He refused to have more surgery with the potential complications and never agreed to get on the transplant waiting list.After the implanted LVAD, my husband was not able to do most of what he loved in life. He couldn’t work (he was a truck driver), he couldn’t go fishing or swimming in the ocean, he couldn’t go hunting and fishing, and his overall physical condition was so poor that he couldn’t cook, garden and, most aggravating to him, he could not take a regular hot shower. The LVAD had to be covered with plastic in order to avoid getting the drive-line area wet, so bathing was a complicated process. He had trouble with stairs, had neuropathic pain in his legs from diabetes, and because of the pain medications, he felt cloudy and dizzy and slept most of the day in his recliner. I took care of him, even after I had to go back to work, and at the same time, I managed our two children (ages 9 and 12 at the time of LVAD).After almost two years of living with the LVAD, multiple hospitalizations for GI bleeds then seizures, more medications, and weekly blood draws for INR1, my husband requested that the LVAD be de-activated and that he be allowed to die of his heart failure. He described his life as “miserable.” He watched as his misery impacted his children and me. He suffered daily and had none of the joys that made life worth living for him. When we approached the cardiac team that implanted and monitored his LVAD with his request, they said “no.” They would not de-activate the LVAD because it was working. It was keeping him alive and he had no other terminal illness. His palliative doctor, who was treating his pain, also heard his request and told us to call for an “ethics consult” to determine if he would be “allowed” to have the LVAD de-activated. We got the number and called on March 31, 2016.At the time of the call to Ethics, we had no idea what “Ethics” was, other than a general definition of the word ethics as in professional behaviors and such. We did not know what to expect but we called. We would never have known to call “Ethics” if the palliative doctor had not advised us to do so, and my husband might have suffered a longer, more painful life both mentally and physically prolonged by the LVAD.We explained the request to the ethics consultant. She listened to my husband describe his daily living and his dissatisfaction with the quality of his life, his physical and emotional suffering, and his wish to rid himself of the LVAD and allow nature to take its course. There was actually no decision to be made on his part. He had already made up... (shrink)

Background: Increasing attention to patients’ rights and their ability to choose their healthcare provider have changed the way patients can respond to untoward, disempowering and abusive healthcare encounters. These responses are often seen as crucial for quality improvement, yet they are little explored and conceptualized. Objective: To explore patients’ potential responses to untoward healthcare encounters and looking at their possible consequences for care quality improvement as well as for the individual patient. Research design: The article is structured (...) looking at two primary strategies: patient exit (leaving a healthcare provider) and patient voice (expressing grievances), derived from Hirschman (1970). These strategies were explored by the use of theoretical and empirical literature and applied to an individual patient case. The case functions as a pedagogical tool to illustrate and problematize what exit and voice strategies can mean for a single patient. Ethical considerations: The patient case is my version of a generalized scenario that is described elsewhere. It does not represent an individual patient’s story, but aims to be realistic and recognizable. Findings and conclusion: Based on the existing literature, it is hypothesized that, in their current form, exit and voice strategies have a limited effect on care quality and can come at a price for patients. However, both strategies may be of value to patients and providers. Therefore, the healthcare system could empower patients to engage in action and could further develop ways for providers to effectively use patients’ responses to improve practice and find ways to prevent patients from untoward experiences in healthcare. (shrink)

This volume of papers is the long-awaited result of written contributions made by participants attending the conference entitled The Patient – Examining Realities, 5th Global Conference, held at Mansfield College, Oxford University, England, September, 2016. The conference organised by the multi-disciplinary academic forum Interdisciplinary Net attracted scholars and medical practitioners from across the world and became an intense three- day opportunity for fruitful discussion between professionals representing a number of disciplines: health and medical science, applied science such as occupational therapy, (...) counselling practices, more abstract and spiritual healing practices through symbolic intervention – with, e.g., mandalas opening up an emotional and much needed dialogue between doctor and patient and encouraging patients also to engage in their own healing process – film and media studies, literature, etc. This book sheds light on research conducted by some of these conference participants – most of them medical professionals and healthcare providers employed by reputable academic institutions and who take a both scientific and practical interest in the healthcare industry and its practices. The book also includes discourses by academics with a more theoretical interest in health and spirituality and the often complex, even problematic, doctor-patient relationship. Research presented in this volume of conference papers is both steeped in cultural traditions and reflective of new trends in certain countries across the globe. Theories, practices and trends highlighted in the book are ultimately universal in that they concern all of us on a global level. We will all at some stage become patients and are already patients, to a greater or lesser extent, throughout our lives. Given this, it feels vital to engage the reader in a discourse which highlights aspects of medical care that need to be brought to the fore and to the public attention, and to – both as readers and writers – also reflect on feelings and concerns expressed by patients themselves. This will hopefully lead to a greater understanding of what it means to be a patient and to increased levels of sympathy and empathy for what patients are going through. In saying this, the volume equally much highlights the role and significance of medical practitioners in times of increased patient rights and of pressing concerns, demands and expectations placed on the healthcare industry, at least in the Western world. (shrink)

Background: Body touch and close physical proximity are inevitable in some healthcare procedures and can evoke feelings of shame, humiliation, and anger in patients. Given the increasing recognition of human dignity, exploring the occurrence of these negative emotional experiences and identifying mechanisms for their prevention are crucial.Aim: To develop and define the concept of “patient’s sexual dignity discomfort.” Design: A hybrid model of concept development was utilized.Methods: In the theoretical phase, a scoping review was conducted to establish a working (...) definition of patient’s sexual dignity discomfort. This definition was refined and validated using qualitative data collected during the fieldwork phase. In the analytical phase, a final conceptual model of patient’s sexual dignity discomfort was proposed by integrating findings from both the theoretical and fieldwork phases.Ethical considerations: All participants completed an informed consent process, and interviews were conducted via Zoom or phone by a certified psychiatric nurse to ensure confidentiality, anonymity, and comfort.Results: Four themes describing attributes of patient’s sexual dignity discomfort were explored: experiencing shame and embarrassment, vulnerability-induced loss of control, dehumanization and objectification, and uncertain sexual autonomy. Patient’s sexual dignity discomfort occurs when patients perceive care procedures as sexually inappropriate or as involving unnecessary sexual activity, particularly when healthcare providers display unprofessional attitudes or when patients lack consent or are not mentally prepared for the procedure because of insufficient information. This discomfort leads patients to refuse or avoid healthcare treatments and prioritize finding better healthcare services over their health. It can also prompt providers to avoid patients, resulting in a compromised quality of care and poor health outcomes.Conclusions: Patient’s sexual dignity discomfort poses a significant threat to the quality of patient care and preservation of dignity. Nurses can trigger this intentionally or unintentionally, highlighting the need for comprehensive education and training to prevent it. (shrink)

The literature on patient public involvement and engagement (PPIE) in health research has grown significantly in the last decade, with a diverse range of definitions and topologies promulgated. This has led to disputes over what the central functions and purpose of PPIE in health research is, and this in turn makes it difficult to assess and evaluate PPIE in practice. This paper argues that the most important function of PPIE is the attempt to make health research more democratic. Bringing this (...) function to the fore and locating PPIE in the wider context of changes in contemporary forms of democratic engagement provides greater conceptual clarity over what PPIE in research should be trying to achieve. Conceptualizing PPIE as a form of democratization has a number of benefits. First, theories of what are appropriate, normatively justifiable and workable criteria for PPIE practices can be developed, and this can provide tools to address the legitimacy and accountability questions that have troubled the PPIE community. Second, this work can be used to form the basis of a research agenda to investigate how PPIE in health research operates, and how it can facilitate and/or improve democratic processes in health research. (shrink)

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.

Background Social justice is recognized by reputable international organizations as a professional nursing value. However, there are serious doubts as to whether it is embodied in Catalan nursing education. Objectives To explore what nursing students take away from two teaching activities led by expert patients (one presentation and three expert patient illness narratives) on the topics of social justice, patient rights, and person-centered care. Research design Qualitative study using a content analysis approach. The research plan included (1) think-pair-share activities (...) (additional faculty-assisted presentation and three faculty-assisted, semi-structured scripted narratives); (2) paired reflections; (3) focus groups; and (4) content analysis of paired reflections and focus groups. Participants and research context Fourth-year nursing degree students at the Autonomous University of Barcelona (UAB), Spain. Convenience sampling was used. Ethical considerations The UAB Research Ethics Committee did not deem it necessary to apply any specific measures. We fully explained to patients that they could decide what medical information they would share with the students that was relevant to their learning, and we provided students with guidelines about patient confidentiality, dignity, and respect. Findings/results The students engaged in reflection about their education (recognizing that it had been centered on the professional and not the patient) and their relationship with the patient, in which they reproduced low-involvement patient care by modeling behaviors of their nurse educator. Moreover, they valued a person-centered care model with an emphasis on the emotional part but left out decision-making as an individual right of people. Conclusions The think-pair-share activities were useful to spark self-reflection among students, who identified aspects to change in their own practice, and reflected about their own education process, both of which promote change. (shrink)

Although mental health professionals traditionally have been viewed as sole experts and decision-makers, there is increasing awareness that the experiential knowledge of former patients can make an important contribution to mental health practices. I argue that current patients likewise possess a kind of expertise, and that including them as active participants in diagnosis and treatment can strengthen their autonomy and allow them to build up important habits and skills. To make sense of these agential benefits and describe how (...) patients might act as co-regulators of a therapeutic encounter, I look to the enactivist notion of “participatory sensemaking”. (shrink)

Background In recent years, patient advocacy has emerged as a prominent concept within healthcare. How nursing students decide what is best for their patients is not well understood. Objective The objective is to examine nursing students' views on doing what is best for patients during their clinical experiences and how they seek to establish patient interests when providing care. Research questions guiding the interview were as follows: (1) What are nursing students' perceptions of patient interests? (2) What factors (...) influence nursing students' perceptions of advocating for patient’s interests? Research design Qualitative descriptive research using thematic analysis. Participants and research context Data was collected through individual online interviews with nine nursing students with clinical experience. Ethical considerations The study was approved by the University Research Ethics Committee. Participants provided digital informed consent. Results The students asserted that they are able to understand the patients' interests by placing emphasis on the patients' needs. They believe that it is crucial to adopt a collaborative strategy for the provision of care to meet these requirements. In addition, some of them expressed concern over the most effective methods of advocating for the interests of patients. Three themes were identified. (1) Focussing on patient needs first, (2) taking a collective approach, and (3) learning how to advocate. Conclusions Students understand and value the ethical commitments associated with advocating for the patient's best interest by considering factors such as prioritising the patient's needs, adopting a strategy that involves everyone, and acquiring the ability to undertake the advocacy role. Additionally, nursing education strategies in clinical contexts require additional study to inspire students to do what is in their patient’s best interests. (shrink)

Introduction: Mental health nursing is dependent on nurses’ ability to engage in therapeutic relationships with patients. The ability to manage professional boundaries is equally important, but less explored. This study aims to address the following research questions: How do nurses define their professional, personal, and private roles? What are nurses’ experiences with professional boundaries? What are the implications of nurses’ understanding of these boundaries? Background: Nurse–patient relationships are characterized by asymmetrical power dynamics, which places the responsibility of delineating professional (...) boundaries on the nurse. While ethical codes offer guidance, nurses must identify appropriate boundaries in a dynamic process that relies on the clinical context. Research design: This study used critical discursive psychological analysis to examine data from participant observations, individual interviews, and focus group discussions. Participants and research context: We included 16 nurses working in mental health care in this study, comprising 12 in specialist mental health care and 4 in community mental health care. Ethical considerations: The study was registered with Norwegian Social Science Data Services. Results: Nurses defined professionalism as being an educated caregiver who prioritizes patients’ needs. Professionalism involves personal engagement, while some personal matters remain private. However, nurses experienced challenges in maintaining professional boundaries, facing dilemmas due to the subjective nature of boundaries and patients’ unpredictable responses. Conclusions: While nurses prioritize patients’ needs and best interests, this study demonstrated that personal engagement is considered part of professionalism. However, nurses encounter complex dilemmas in setting professional boundaries. Additionally, these boundaries can either emphasize or de-emphasize the power differential in nurse-patient relationships. (shrink)

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)

Providing a groundbreaking approach to reinventing health care, this book is a practical guide to placing patient healing back at the center of the hospital's mission. Drawing on a wealth of practical experience, the authors show health care professionals how to decrease costs and improve quality by restructuring hospital services around patients and their needs and by utilizing design and architecture to enhance the healing environment. Using the core concepts of systems theory, extensive research, and lessons from pioneering hospitals, (...) they present state-of-the-art health care practices that heal as well as cure. (shrink)

Some patients who are dependent on extracorporeal membrane oxygenation (ECMO) are alert and retain capacity to participate in decision-making, including decisions regarding whether to continue life...

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)

According to N. Goodman, the Carnapian notion of similarity is useless in science and without interest for philosophy. In our paper we suggest that, given the current role that the notion of similarity has in managing biomedical big data, this drastic position should be revised, and similarity should be provided a scientifically useful philosophical interpretation. With the advent of the new sequencing technologies, imaging technologies and with the improvements of health records, the number of genomics, post-genomics and clinical data has (...) exponentially increased. The deluge of data has urged, among others, to devise a new way of stratifying patients. A solution has been found and it is based exactly on the notion of similarity. By discussing two examples focusing on similarity among breast cancer patients, in the paper we illustrate such a use, and analyze it from a philosophical standpoint by resorting to A. Tversky’s features matching approach. We believe that the latter can foster some better understanding of the meaning and current use of similarity in the context of biomedical big data, and that, therefore, be the focus of further reflections in the philosophy of science, in particular in the philosophy of biomedicine. (shrink)

The concept of a Patient Preference Predictor—an algorithm that supplements or replaces the process of surrogate decision-making for incapacitated patients—was first suggested a decade ago (Rid and...

Patient preference predictors take us from known demographic descriptors to unknown facts about patients’ preferences over treatment options. However, the use of PPPs to make treatment decisions on behalf of incapacitated patients faces an apparent normative problem: their use in certain contexts appears to involve treating patients paternalistically. In this paper, I consider whether PPPs can find a home in the context of military medicine. On the assumptions that military organizations sometimes permissibly treat their members paternalistically, I (...) identify the specific circumstances in which PPPs can play a role in making treatment decisions on behalf of patients. I show that these circumstances are not only the natural home of PPPs, PPPs – or something very much like them – are precisely the sort of device required for it to be permissible to paternalistically override a patient’s expressed preferences. (shrink)

As a science and practice of intervention and control, medicine is concerned with cure and care, the promotion and protection of health, and the prevention of maladies and human suffering. This wide-ranging task is accomplished through medical practice and medical research, though no sharp boundary between them can be drawn. A widespread misconception about medicine has it that medicine is concerned with illness and disease. However, the subject of medicine is the patient, i.e., Homo patiens, but not illness or disease, (...) with the ends being directed toward the relief, prevention of human suffering, and saving human life. Accordingly, medicine needs a theory of the patient first of all. Nosology and pathology as studies of illness and disease may be viewed as elements of such a theory of the Homo patiens. Seen from this perspective, clinical research and practice are to be based on the question: What is a patient? That is, what characteristics distinguish a patient from a non-patient? The present chapter is concerned with this question. The inquiry into what a patient, i.e., Homo patiens, is, intersects with anthropology that is concerned with the question of what is a human being? This is the fundamental philosophical question of medicine because, as an experimental and diagnostic-therapeutic discipline, it undertakes momentous interventions in human life. It therefore needs an image of the human being so as to ascertain whether medical interventions are in accord with, or contravene, that image. For example, it is a legitimate question to ask whether the transplantation of animal cells, tissues, and organs into humans, i.e., xenotransplantation, or whether the designing of offspring by genetic engineering, is morally permissible. Since anthropology is basically a philosophical endeavor, medicine at its foundations turns out to intersect with philosophy. We shall consider the patient as a bio-psycho-social agent who is suffering or whose life is threatened by some occurrences inside or outside of her body, usually called diseases, pathogenic environments, etc. Our aim is to understand what these occurrences may look like and how they may be conceptualized, systematized, recognized, causally analyzed, and controlled. Thus, our discussion consists of the following five sections: 7.1 The Suffering Individual; 7.2 The Bio-Psycho-Social Agent; 7.3 Health, Illness, and Disease; 7.4 Systems of Disease; 7.5 Etiology (= Science of Clinical Causation). (shrink)

In this paper, I argue for a fundamentally different kind of moral luck, Patient Moral Luck (PML). Unlike traditional moral luck, PML concerns the amount of moral consideration that different moral patients — that is, creatures (including human beings) with moral status — will be owed, independent of factors in their control. PML, I argue, entails that morality itself appears to sanction and even obligate actions which, along predictable patterns, involve repeatedly failing to equally consider certain moral patients (...) - and repeatedly the same people - over sustained periods of time, through no fault of their own. And often these people will be members of groups who are already worse off through no fault of their own, thus exacerbating unjust inequalities. I defend the existence and normative puzzle of PML by introducing the notion of “moral force” - roughly, the amount of considerative weight a given moral patient is owed by some deliberating agent or group of agents. I then argue that this will vary widely between different moral patients through no fault or credit of their own. This, I claim, is inconsistent with the intuition that supports Equal Consideration principles in moral theory. I conclude by considering how we can minimize or mitigate PML without a radically revisionary normative theory. (shrink)

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)

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.

'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.

The participation of patients in the training of health professionals constitutes a paradigmatic break, not only with regard to what is going on in this particular field but also with regard to what can be observed in all training courses for the helping professions. The purpose of this article is to consider this mobilization of patient trainers both as an actual change and as a potential operator of change. To do this, we will rely on an intervention research aimed (...) at promoting partnership in health and on the functioning and productions of one of the working groups dedicated to the training of health professionals. (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)

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)

The use of patient restrictions (e.g. involuntary admission, seclusion, restraint) is a complex ethical dilemma in psychiatric care. The present study explored nurses’ (n = 22) and physicians’ (n = 5) perceptions of what actually happens when an aggressive behaviour episode occurs on the ward and what alternatives to seclusion and restraint are actually in use as normal standard practice in acute psychiatric care. The data were collected by focus group interviews and analysed by inductive content analysis. The participants believed (...) that the decision-making process for managing patients’ aggressive behaviour contains some in-built ethical dilemmas. They thought that patients’ subjective perspective received little attention. Nevertheless, the staff proposed and appeared to use a number of alternatives to minimize or replace the use of seclusion and restraint. Medical and nursing staff need to be encouraged and taught to: (1) tune in more deeply to reasons for patients’ aggressive behaviour; and (2) use alternatives to seclusion and restraint in order to humanize patient care to a greater extent. (shrink)

Patient decision aids enable patients to be better informed about the potential benefits and harms of their healthcare options. Certification of patient decision aids at the national level in the United States is a critical step towards responsible governance—primarily as a quality measure that increases patients’ safety, as mandated in the U.S. Patient Protection and Affordable Care Act (PPACA). Certification would provide a verification process to identify conflicts of interest that may otherwise bias the scientific evidence presented in (...) decision aids. Certification also benefits clinicians who may otherwise face malpractice claims based on harm to patients caused by possible reliance on patient decision aids that are inaccurate, incomplete, or presented in a manner that biases the patient’s decision. Existing work by the International Patient Decision Aid Standards Collaboration could guide the establishment of a certification process within the U.S. This article argues for national certification of patient decision aids and discusses how that may be achieved. (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)

The Patient in the Family diagnoses the ways in which the worlds of home and hospital misunderstand each other. The authors explore how medicine, through its new reproductive technologies, is altering the stucture of families, how families can participate more fully in medical decision-making, and how to understand the impact on families of medical advances to extend life but not vitality.

Background: As a fundamental human right in healthcare, informational privacy creates the foundation for patient’s safety and the quality of care. However, its realization can be a challenge in prehospital emergency care, considering the nature of the work. Objectives: To describe patient’s informational privacy, its realization, and the factors related to the realization in prehospital emergency care from the perspective of paramedics. Research design: A descriptive questionnaire study was conducted. The data were analyzed with inductive content analysis. Participants and research (...) context: The participants (n = 26) were paramedics in one of the 22 rescue departments in Finland. Ethical considerations: The study received ethical approval from the ethics committee of the University of Turku (Finland). Permission for the study was given by the collaborating rescue department. Findings: Paramedics described patient’s informational privacy as patients’ right to their own health records, as protection of the patient’s health records, and as comprehensive respect of the patient’s privacy by the persons involved in the patient’s care. In general, informational privacy was described as being realized regarding confidentiality, reporting, and maintaining the patient’s health records. However, it was also described as being dependent on the context, and some areas in need of improvement were identified. Promoting and preventing factors related to the realization were also identified. The promoting factors were paramedics’ professional activity, environment, training, and guidelines. The preventing factors were the nature of the work, paramedics’ attitudes, and the lack of knowledge concerning informational privacy among paramedics, the collaborating authority, patients, and relatives. Discussion and conclusion: Paramedics had a multidimensional understanding of informational privacy and the factors related to its realization. However, its realization varies, and more research and education are therefore needed to enhance the realization and to provide equal and high-quality care for all the patients in prehospital emergency care. (shrink)

BackgroundHospitals face a disclosure dilemma when large-scale adverse events affect multiple patients and the chance of harm is extremely low. Understanding the perspectives of patients who have received disclosures following such events could help institutions develop communication plans that are commensurate with the perceived or real harm and scale of the event.MethodsA mailed survey was conducted in 2008 of 266 University of Washington Medical Center (UWMC) patients who received written disclosure in 2004 about a large-scale, low-harm/low-risk adverse (...) event involving an incomplete endoscope cleaning process. The survey measured patients’ satisfaction with this disclosure, their concerns about healthcare outcomes, and their recommendations for future communication, given similar circumstances.ResultsSurveys were received from 127 of 266 (48 percent) of eligible respondents; 98 percent thought that UWMC was right to inform them about this event, and mean satisfaction with the disclosure was 7.7 on a 0 to 10 scale. Of the 127 respondents, 64 percent were somewhat or very concerned that the endoscope cleaning problem might cause them health problems; 60 percent reported their impressions of UWMC’s honesty and integrity had increased; 31 percent said their perceptions of the quality of care had increased; 94 percent agreed that institutions should tell patients about any error in their care, even when the risk of harm was low, although 28 percent agreed that such notifications would make them anxious. Respondents who reported concern that the event could cause them health problems were less likely to be satisfied with the institution’s disclosure. Patients cited their right to know information material to their own health and healthcare as an important reason for disclosure.ConclusionRecipients of disclosure of a large-scale, low-harm/low-risk event overwhelmingly supported being told of the event and endorsed notification of patients for similar events in the future. Although informing patients may cause concern for some, institutions should ensure their disclosure policies and procedures reflect their patients’ preferences. (shrink)

Patient participation in healthcare is highly promoted for democratic reasons. Older patients make up a large part of the hospital population but their voices are less easily heard by most patient participation instruments. The client council can be seen as an important medium to represent the interests of this increasing group of patients. Every Dutch healthcare institution is obliged to have a client council and its rights are legally established. This paper reports on a case study of a (...) client council in a hospital and shows how equality as the core democratic value manifests itself in practice and marginalizes the voices of older patients. Based on the work of Joan Tronto we show that sameness is the driving force behind the functioning of the client council which leads the council to operate as part of the hospital system. Consequently, important aspects of the hospital practice remain out of sight. To be of greater value for all patients we argue that successful patient participation requires not only equal opportunities but also ‘the condition of equal voice’. (shrink)

The aim of this paper is discussion of a new middle‐range theory of patient safety goal priming via safety culture communication. Bedside nurses are key to safe care, but there is little theory about how organizations can influence nursing behavior through safety culture to improve patient safety outcomes. We theorize patient safety goal priming via safety culture communication may support organizations in this endeavor. According to this theory, hospital safety culture communication activates a previously held patient safety goal and increases (...) the perceived value of actions nurses can take to achieve that goal. Nurses subsequently prioritize and are motivated to perform tasks and risk assessment related to achieving patient safety. These efforts continue until nurses mitigate or ameliorate identified risks and hazards during the patient care encounter. Critically, this process requires nurses to have a previously held safety goal associated with a repertoire of appropriate actions. This theory suggests undergraduate educators should foster an outcomes focus emphasizing the connections between nursing interventions and safety outcomes, hospitals should strategically structure patient safety primes into communicative activities, and organizations should support professional development including new skills and the latest evidence supporting nursing practice for patient safety. (shrink)

Promoting ethical medical practices and preserving human rights principles require an understanding of patient rights. Studies show varying awareness levels among patients regarding their rights. This study aims to assess the level of awareness among patients in Palestine about their rights and the compliance of healthcare professionals. A cross-sectional study was conducted between November 2023 and January 2024 in the Northern West Bank cities. Data collection was conducted by three trained medical students utilizing an interviewer-administered questionnaire. The association (...) between participant characteristics and awareness was assessed using the Chi-square test, followed by a multivariate regression analysis to control for confounding variables. Of 400 patients surveyed, 47.0% had good awareness of their rights. Multivariate analysis showed that awareness was associated with patients in the age group of 18–30 years and 46–60 years, having private insurance, more prior hospitalizations, non-governmental settings, and prior charter awareness. Awareness was highest for respectful care and lowest for staff introductions. Non-governmental facilities performed better than governmental on explaining procedures, alternatives, and costs, though both settings scored highly on non-discrimination and consent. Our findings underscore global gaps in ensuring adequate patients’ rights awareness and implementation, with over half exhibiting inadequate knowledge. Significant deficiencies exist in involving patients in decision-making, informing about procedures/costs, and providing accessible complaint mechanisms, particularly in governmental facilities. Comprehensive, culturally-appropriate initiatives involving multisectoral collaborations are crucial to drive substantive reforms translating patient-centered care principles into consistent practice worldwide. (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)

ABSTRACT: This article analyzes the meaning of solidarity for bioethics and healthcare. Drawing on the anthropology of embodiment, it argues that solidarity arises upon relations of care for our vulnerable bodies and transforms it into our common democratic project. Its main focus is, therefore, not on distribution, which is the purpose of justice, but on the recognition and democratic inclusion of persons who—due to the vulnerable condition of their bodies—are still deprived of full participation in the public sphere. By reorienting (...) caring relationships around the horizontal axis, solidarity obliges us to treat a person who is cared for not only as a passive recipient of healthcare goods, but as a fellow citizen and a partner in the process of care. It is argued that the model of narrative citizenship, by establishing discursive equality between a patient and a physician, can contribute to greater inclusion of vulnerable individuals into our societies. (shrink)

This article focuses on patients' participation in decision‐making in meetings with healthcare professionals in a healthcare system, based on neoliberal regulations and ideas. Drawing on two constructed empirical cases, primarily from the perspective of patients, this article analyses and discusses the clinical practice around decision‐making meetings within a Foucauldian perspective. Patients' participation in decision‐making can be seen as an offshoot of respect for patient autonomy. A treatment must be chosen, when patients consult physicians. From the perspective (...) of patients, there is a tendency for healthcare professionals to supply the patients with the information that they think are necessary for them to make their own decision. But patients do not always want to be a ‘customer’ in the healthcare system; they want to be a patient, consulting an expert for help and advice, which creates resistance to some parts of the decision‐making process. Both professionals and patients are subject to the structural frame of the medical field, formed of both neoliberal framework and medical logic. The decision‐making competence in relation to the choice of treatment is placed away from the professionals and seen as belonging to the patient. A ‘projectification’ of the patient occurs, whereby the patient becomes responsible for his/her choices in treatment and care and the professionals support him/her with knowledge, preferences, and alternative views, out of which he/she must make his/her own choices, and the responsibility for those choices now and in the future. At the same time, there is a tendency towards de‐professionalization. In that light, participation of patients in decision‐making can be regarded as a tacit governmentality strategy that shapes the location of responsibility between individual and society, and independent patients and healthcare professionals, despite the basically desirable, appropriate, and necessary idea of involving patients in their own situations from a humanistic perspective. (shrink)

With advancing rank in medical training comes increased academic and clinical responsibility, including education and supervision of trainees and junior staff. When I became a senior postdoctoral fellow sub‐specializing in neonatology, I assumed the role of co‐attending in the neonatal intensive care unit. At that point in my training, I felt well prepared for the challenging task. I would be in charge, make decisions independently with the team, and supervise, as well as teach, the junior fellows, residents, and practitioners. In (...) short, I would assume full responsibility for the care of the patients, their families, and the medical team. My mentor, an experienced attending, would discuss every patient with me each day, but would otherwise stand in the shadows, available for help and guidance when needed. On the very first day, one of the smaller premature babies on our service started having difficulty breathing, and it was soon clear that she would need to have her endotracheal tube reinserted. (shrink)

Ravelingien et al1 argue that we should recategorise people in a permanent vegetative state as dead. Although the dilemma they describe is very real, their solution will not work. Other respondents to this paper have advanced several powerful arguments against the attempt to describe patients in a PVS as dead. Fortunately, the original argument contains sufficient resources for developing an alternative solution to this dilemma without having to radically change the current legal or social status of patients in (...) a PVS. In fact, patients in a PVS may be enrolled in xenotransplantation experiments, provided that their prior informed consent has been sought.The motivation for the original paper was to resolve an apparently intractable ethical conflict. On the one hand, there are powerful ethical and medical reasons for proceeding with research into the transplantation of non-human organs into human patients, whereas on the other, there are equally powerful ethical reasons for blocking whole-organ transplant experiments. These reasons are unusual in that special problems with xenotransplantation will block experiments that are permitted in other cases. In particular, the unquantifiable risk of a pandemic triggered by diseases such as porcine endogenous retrovirus crossing the species barrier will either block the research or expose subjects to the risk of indefinite quarantine . The authors also argue that the restrictions placed on transplant recipients and the possibility of long-term and intrusive monitoring, restrictions on sexual contacts and reproduction, and possible confinement represent excessive and ethically unjustifiable burdens. Over time, the recipients may wish to withdraw their consent, but the risks to public health would prevent them from doing so, thereby violating the basic principle that subjects of scientific and medical experiments should be able to revise or withdraw consent . …. (shrink)

This paper aims to critique the phenomenon of advanced patient autonomy and choice in healthcare within the specific context of self-testing devices. A growing number of self-testing medical devices are currently available for home use. The premise underpinning many of these devices is that they assist individuals to be more autonomous in the assessment and management of their health. Increased patient autonomy is assumed to be a good thing. We take issue with this assumption and argue that self-testing provides a (...) specific example how increased patient autonomy and choice within healthcare might not best serve the patient population. We propose that current interpretations of autonomy in healthcare are based on negative accounts of liberty to the detriment of a more relational understanding. We also propose that Kantian philosophy is often applied to the healthcare arena in an inappropriate manner. We draw on the philosophical literature and examples from the self-testing process to support these claims. We conclude by offering an alternative account of autonomy based on the interrelated concepts of relationality, care and responsibility. (shrink)

Evidence suggests that one reason doctors provide certain interventions in assisted reproductive technologies (ART) is because of patient demand. This is particularly the case when it comes to unproven interventions such as ‘add‐ons’ to in vitro fertilisation (IVF) cycles, or providing IVF cycles that are highly unlikely to succeed. Doctors tend to accede to demands for such interventions because patients are willing to do and pay ‘whatever it takes’ to have a baby. However, there is uncertainty as to what (...) moral weight should be placed on patient‐led demands in ART, including whether it is acceptable for such demands to be invoked as a justification for intervention. We address this issue in this paper. We start by elucidating what we mean by ‘patient‐led demand’ and synthesise some of the evidence for this phenomenon. We then argue that a doctor's professional role morality (PRM) yields special responsibilities, particularly in commercialised healthcare settings such as ART, because of the nature of professions as social institutions that are distinct from markets. We argue on this basis that, while there may be reasons (consistent with PRM) for doctors to accede to patient demand, this is not always the case. There is often a gap in justification between acceding to patient‐led demands and providing contested interventions, particularly in commercial settings. As a result, acceding to demand in such settings needs a strong justification to be consistent with PRM. (shrink)

Respecting privacy and patients’ satisfaction are amongst the main indicators of quality of care and one of the basic goals of health services. This study, carried out in 2007, aimed to investigate the extent to which patient privacy is observed and its correlation with patient satisfaction in three emergency departments of Tehran University of Medical Science, Iran. Questionnaire data were collected from a convenience sample of 360 patients admitted to emergency departments and analysed using SPSS software. The results (...) indicated that, according to 50.6% of the patients, the extent to which their privacy was respected was described as either ‘weak’ or ‘average’. Spearman’s coefficient indicated a significant correlation between respecting privacy and the patients’ satisfaction about the various aspects of privacy studied. Considering the levels of privacy observed together with the patients’ degree of satisfaction, it is imperative that clinical professionals address both aspects from conceptual and practical viewpoints. (shrink)

Per the OpenNotes directive of the 21st Century Cures Act implemented in 2021, patients and their legally recognized representatives must be able to access the electronic medical record in real time. This is an opportunity for clinical ethicists and other providers to reflect on their charting practices, particularly how and when they quote patients. Although using direct quotations is common because it seems to avoid misinterpretation, it may not always be appropriate. In this article, we discuss some of (...) the risks and benefits of quoting in the context of OpenNotes and provide suggestions for how clinical ethicists can leverage their unique position to help mitigate some of these risks and promote more reflective charting practices among the teams they work with. (shrink)

Simulated standardized patients (SPs) are trained individuals who pose incognito as people seeking treatment in a health care setting. With the method’s increasing use and popularity, we propose some standards to adapt the method to contextual considerations of feasibility, and we discuss current issues with the SP method and the experience of consent and ethical research in international SP studies. Since a foundational discussion of the research ethics of the method was published in 2012, a growing number of studies (...) have implemented this method to collect data on the quality of care in a variety of settings around the world. We draw from that experience to provide empirical foundations for a popular approach to ethical approval of such studies in the United States and Canada, which has been to obtain a waiver of informed consent from the health care providers who are the subjects of the research. However, the majority of studies to date have evaluated quality of care outside the U.S., requiring additional ethical consideration when partnering with international institutions. We discuss these considerations in the context of a case study from a completed SP study in South Africa, where informed consent is constitutionally protected. (shrink)