The unexpected roles of the microbiota in cancer challenge explanations of carcinogenesis that focus on tumor-intrinsic properties. Most tumors contain bacteria and viruses, and the host’s proximal and distal microbiota influence both cancer incidence and therapeutic responsiveness. Continuing the history of cancer–microbe research, these findings raise a key question: to what extent is the microbiota relevant for clinical oncology? We approach this by critically evaluating three issues: how the microbiota provides a predictive biomarker of cancer growth and therapeutic responsiveness, the (...) microbiota’s causal role(s) in cancer development, and how therapeutic manipulations of the microbiota improve patient outcomes in cancer. Clarifying the conceptual and empirical aspects of the cancer-associated microbiota can orient future research and guide its implementation in clinical oncology. (shrink)

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

In medical research, patients are increasingly recognized with ‘lay knowledge’ but their views are poorly researched. The study objective was to investigate patients’ attitudes to medical research. This is in comparison to lay and expert members on ethical review boards, as their task is to evaluate the risk−benefits of research, which are ultimately grounded in attitudes and values. From focus-group interviews with patients suffering from chronic inflammatory diseases, a postal questionnaire was developed and sent to patient members (...) of the Swedish Rheumatism Association and to all ERB board members in Sweden. Response rates were 65 percent and the surveys were conducted in Jan−May 2011. Agreement across the groups included priority for medical research on diagnostic and early detection of disease. A key difference was expert and lay ERB members giving higher priority to basic research/research on lifestyle and prevention, whereas patients prioritized research on daily function. On this significant point, lay members did not share the opinion of this patient group, indicating that they may be poor representatives for patients’ views. These results call for further research: how can patient perspectives be included in ERB discussions and in what way should patients’ values influence the research agenda. (shrink)

It is widely acknowledged that the HIV and AIDS pandemic is a global emergency and that cheap, effective treatment should be provided for as many people as possible worldwide. But there are many challenges to rolling out antiretroviral treatment in resource-poor settings. These include the cost of drugs, sustaining their supply and distribution, the complexity of treatment regimens, selection of patients for treatment, shortage of medical and nursing personnel, inadequacy of healthcare facilities, the need for uninterrupted, lifelong treatment, (...) and monitoring for drug resistance. Great efforts, nationally and internationally, are required to meet these challenges. (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)

Ethical principles are not mere abstract concepts of academic interest. They have to be applied by care providers in the real world under complex, challenging and often perplexing conditions. This paper discusses, through the case of an ethnic minority patient with metastasis of bowel cancer, the ethical dilemma of truth-telling and withholding information about poor prognosis. It highlights the complexities of applying ethical principles in a different cultural milieu, reflecting on different ethical frameworks and justifications. The paper also discusses (...) some of the wider implications of the practices, issues and controversies of truth-telling about prognosis in cross-cultural communication relevant to clinical practice. (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)

The Liverpool Care Pathway for the Dying Patient (LCP) was an integrated care pathway for patients in the final days or hours of life, developed at the Royal Liverpool University Hospital in conjunction with the Marie Curie Palliative Care Institute, Liverpool. The LCP became increasingly the normative style of care for patients in the terminal stage across NHS England from the 1990s onwards. Following significant questions raised in Parliament, by the media and other stakeholders, an independent review panel (...) was established under Baroness Neuberger in 2013 to investigate the LCP. The findings of the panel were published as More Care Less Pathway: a Review of the Liverpool Care Pathway identifying significant failings in the delivery of the LCP thus leading to it being phased out some six months later. Rather than being euthanasia through the backdoor, many of the criticisms of the LCP and its poor implementation are indicative of poor communication, limited knowledge of the dying process and a paucity of death education. (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)

In his study on the Sermon on the Mount, Hans Dieter Betz remarks that the expression `the poor in spirit' (οί πτωχοί τω πνεύματι) (Mt. 5:3) is unique in the entire New Testament and does not appear at all in the early Christian literature or elsewhere in the Greek language. Considering the profound and veiled meaning of the first Matthean beatitude in the Sermon on the Mount, this article asks whether a patient analysis of the Christian virtue of humility (...) may reveal a way of life worthy of the blessings enjoyed by the `poor in spirit' in the Kingdom of Heaven. As such, it is argued throughout that the virtue of humility is the foundation of Christian discipleship, adducing arguments from the patristic exegesis of the first beatitude, the humility of the incarnate Son, and the Eastern Orthodox practice of spiritual direction. (shrink)

In the past 50 years, an ethical-legal boundary has been drawn between treatment and research. It is based on the reasoning that the two activities pursue different purposes. Treatment is aimed at achieving optimal therapeutic benefits for the individual patient, whereas the goal of scientific research is to increase knowledge, in the public interest. From this viewpoint, the patient’s experience should be clearly distinguished from that of a participant in a clinical trial. On this premise, two parallel and mutually exclusive (...) regimes have been established. Yet in the case of deep brain stimulation (DBS), this presentation is a poor fit, for both the patient’s lived experience and medical practice and research. The frictions may be explained by the specificities of the treatment (including surgery and medical devices) and of the pathologies concerned (chronic and evolutive), and by the characteristics of the medical team implementing the treatment. These particularities challenge the dominant frame of reference in medical bioethics and cause difficulties for the current legal framework in fulfilling its dual role: to protect patients while supporting the development of innovative treatments. The dominant model is still the clinical trial for medication safety and legal requirements of drug market regulation. However, DBS forces us to reflect on a medical device that is permanently implanted in the brain by highly specialized multi-disciplinary neurosurgical teams, for the treatment of chronic evolutive diseases. These devices demand fine-tuning on a case-by-case basis and there is still a lot to discover about why DBS is effective (or not). As a result, the wall between treatment and research is osmotic: many discoveries are made incidentally, in the course of treatment. The following study begins with these observations, and suggests that we review legal provisions (especially in French and United States law) so that they are better adapted to the first-person needs and experience of the patient undergoing brain stimulation. (shrink)

Background: Medical tourism involves patients travelling internationally to receive medical services. This practice raises a range of ethical issues, including potential harms to the patient's home and destination country and risks to the patient's own health. Medical tourists often engage the services of a facilitator who may book travel and accommodation and link the patient with a hospital abroad. Facilitators have the potential to exacerbate or mitigate the ethical concerns associated with medical tourism, but their roles are poorly understood. (...) -/- Methods: 12 facilitators were interviewed from 10 Canadian medical tourism companies. -/- Results: Three themes were identified: facilitators' roles towards the patient, health system and medical tourism industry. Facilitators' roles towards the patient were typically described in terms of advocacy and the provision of information, but limited by facilitators' legal liability. Facilitators felt they played a positive role in the lives of their patients and the Canadian health system and served as catalysts for reform, although they noted an adversarial relationship with some Canadian physicians. Many facilitators described personally visiting medical tourism sites and forming personal relationships with surgeons abroad, but noted the need for greater regulation of their industry. -/- Conclusion: Facilitators play a substantial and evolving role in the practice of medical tourism and may be entering a period of professionalisation. Because of the key role of facilitators in determining the effects of medical tourism on patients and public health, this paper recommends a planned conversation between medical tourism stakeholders to define and shape facilitators' roles. (shrink)

Cases of poor care have been documented across the world. Contrary to professional requirements, evidence indicates that these sometimes go unaddressed. For patients, the outcomes of this inaction are invariably negative. Previous work has either focused on why poor care occurs and what might be done to prevent it, or on the reasons why those who are witness to it find it difficult to raise their concerns. Here, we build on this work but specifically foreground the responsibilities (...) of registrants and students who witness poor care. Acknowledging the challenges associated with raising concerns, we make the case that failure to address poor care is a breach of moral expectation, professional requirement and, sometimes, legal frameworks. We argue that reporting will be more likely to take place if those who wish to enter the profession have a realistic view of the challenges they may encounter. When nurses are provided with robust and applied education on ethics, when “real‐world” cases and exemplars are used in practice and when steps are taken to develop and encourage individual moral courage, we may begin to see positive change. Ultimately however, significant change is only likely to take place where practice cultures invite and welcome feedback, promote critical reflection, and where strong, clear leadership support is shown by those in positions of influence across organisations. (shrink)

Over the past year, technology companies have made headlines claiming that their artificially intelligent (AI) products can outperform clinicians at diagnosing breast cancer, brain tumours, and diabetic retinopathy. Claims such as these have influenced policy makers, and AI now forms a key component of the national health strategies in England, the United States, and China. While it is positive to see healthcare systems embracing data analytics and machine learning, concerns remain about the efficacy, ethics, and safety of some commercial, AI (...) health solutions. This paper argues that improved regulation and guidance is urgently required to mitigate risks, ensure transparency and best practice, Without this, patients, clinicians, and other stakeholders cannot be assured of an app’s efficacy, and safety. (shrink)

Background Decisions regarding Cardio-Pulmonary Resuscitation (CPR) and Do Not Attempt Resuscitation (DNAR) orders remain demanding, as does including patients in the process. Objectives To explore physicians’ justification for CPR/DNAR orders and decisions regarding patient inclusion, as well as their reports of how they initiated discussions with patients. Methods We administered a face-to-face survey to residents in charge of 206 patients including DNAR and CPR orders, with or without patient inclusion. Results Justifications were provided for 59% of DNAR (...) orders and included severe comorbidity, patients and families’ resuscitation preferences, patients’ age, or poor prognosis or quality of life. Reasons to include patients in CPR/DNAR decisions were provided in 96% and 84% of cases, and were based on respect for autonomy, clinical assessment of the situation as not too severe, and the view that such inclusion was required. Reasons for not including patients were offered in 84% of cases for CPR and in 70% for DNAR. They included absent decision-making capacity, a clinical situation viewed as good (CPR) or offering little hope of recovery (DNAR), barriers to communication, or concern that discussions could be emotionally difficult or superfluous. Decisions made earlier in the patient's management were infrequently viewed as requiring revision. Residents reported a variety of introductions to discussions with patients. Conclusions These results provide better understanding of reasons for CPR/DNAR decisions, reasons for patient inclusion or lack thereof, and ways in which such inclusion is initiated. They also point to potential side-effects of implementing CPR/DNAR recommendations without in-depth and practical training. This should be part of a regular audit and follow-up process for such recommendations. (shrink)

Aims: To assess patient receipt of written information. To ensure patients understand the written information about a resuscitation policy and to determine whether they disapproved of or had concerns about the policy. Methods: All admissions to four wards of the hospital were approached for an interview. A set questionnaire was asked by one of 2 interviewers. Results: 72% of 572 admissions were interviewed. Refusal accounted for only 2 of the people not interviewed. 11% were unable to advocate for themselves (...) by reason of mental incompetence, inability to communicate or impairment secondary to their illness. Of the 401 interviewed only 49% recalled receiving the patient information booklet. Few patients (17%) recalled reading the information in the patient information booklet. They were all then given the paragraph about the hospital’s resuscitation policy. 352 were asked their understanding and only 61% demonstrated that they understood the paragraph. 91% of all 401 patients approved of the hospital having the option of DNR orders. 31% of people however had concerns related to DNR orders. These are discussed. Conclusions: Many acutely unwell patients are unable to advocate for themselves. Written information is a poor method of communicating with patients. There was limited receipt of the information and many misunderstood the paragraph about the hospitals resuscitation policy. There was a wide range of patient thoughts and concerns expressed. (shrink)

Use of patient clinical photographs requires specific attention to confidentiality and privacy. Although there are policies and procedures for publishing clinical images, there is little systematic evidence about what patients and health professionals actually think about consent for publishing clinical images. We investigated the opinions of three stakeholder groups at 3 academic healthcare institutions and 37 private practices in Croatia. The questionnaire contained patient photographs with different levels of anonymization. All three respondent groups considered that more stringent forms of (...) permission for were needed identifiable photographs than for those with higher levels of anonymization. When the entire face was presented in a photo only 33% of patients considered that written permission was required, compared with 88% of the students and 89% of the doctors. Opinions about publishing patient photographs differed among the three respondent samples: almost half of the patients thought no permission was necessary compared with one-third of students and doctors. These results show poor awareness of Croatian patients regarding the importance of written informed consent as well as unsatisfactory knowledge of health professionals about policies on the publication of patients’ data in general. In conclusion, there is a need for increasing awareness of all stakeholders to achieve better protection of patient privacy rights in research and publication. (shrink)

When plastic surgeons meet with new cosmetic surgery clients, they routinely try to get patients to `sign up' for elective surgery without forcing or pressuring them to do it. On rare occasions, they face a prospective client who, in the course of interaction, signals possible legal or medical risks, thereby calling on the surgeon to screen the client more vigilantly to determine whether embarking on cosmetic surgery will be reasonable. Grounded against nine-month field work at a cosmetic surgery center, (...) combined with 30+ hours of videotaped data of initial consultations, this article investigates a unique situation in which a 74-year-old woman seeking rhinoplasty and rhytidectomy is perceived as a difficult customer. Why this moment was interpreted and emerged as difficult is the analytic focus of the article. Using action-implicative discourse analysis, the analysis describes five communication challenges the plastic surgeon faced in the course of the 60-minute encounter. In the article's conclusion, I reflect on what seems to be a central issue for plastic surgeons: to act as gatekeepers of a fully elective and pricy surgery in a service-oriented business. (shrink)

In contemporary medical ethics health is rarely acknowledged to be an ethical obligation. This oversight is due to the preoccupation of most bioethicists with a rationalist, contract model for ethics in which moral obligation is limited to truth-telling and promise-keeping. Such an ethics is poorly suited to medicine because it fails to appreciate that medicine's basis as a moral enterprise is oriented towards health values. A naturalistic model for medical ethics is proposed which builds upon biological and medical values. This (...) perspective clarifies ethical obligations to ourselves and to others for life and health. It provides a normative framework for the doctor-patient relationship within which to formulate medical advice and by which to evaluate patient choice. (shrink)

BackgroundHuntington’s disease has a poor prognosis. For HD patients in the Netherlands, one way of dealing with their poor prognosis is by drawing up an advance euthanasia directive. Little is known about the perspectives of HD patients on their AED.AimTo gain insight into patients’ views on and attitudes towards their AED, and changes over time.MethodsA longitudinal qualitative interview study using 1 to 6 semi-structured interviews over a period of maximum three years. Nine HD patients (...) who either had an AED or were thinking about drawing it up participated in this study.ResultsWe identified two themes that characterize patients’ perspectives on their AEDs: general character of the AED; uncertainty around their AED. Ad The conditions that the participants described in their AED were generally not very specific for the person. Mostly they were general notions of unbearable suffering. Familiarity with HD in the family could play a role in drawing up an AED. Ad Participants generally were aware of the tentative character of their AED and could have doubts concerning their own willingness or the willingness of others in the future. Sometimes these doubts were so great, that it prevented them from drawing up an AED. However, patients did not alter their AED during the follow-up period or changed in their view or attitude on their AED.ConclusionHD patients that draw up an AED usually describe general conditions for euthanasia and recognize that these conditions may change as the disease progresses. An AED or the wish to draw one up may be a good conversation starter for conversations about goals and preferences for future care. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:'Difficult Patient':A Reflective EssayDaniel McFarlandThe patient who sat across from me knew too much about all brain tumors. According to her, she would never know enough about the one sitting uncomfortably close to her brain's temporal lobe. In her quest for the 'right' answer to her meningioma problem, she became certain that its surgical removal would upend her life, leaving her in neurological taters.She was a small business owner (...) of a practice dedicated to medical massage. Indubitably, she had helped countless clients heal themselves of medical mishaps and avoid or recover from the tyranny of [End Page E13] a medical community that did not always provide respectable, hospitable care. She was certain a craniotomy would end her business, nullifying everything she had spent her life building. She became fluent in the legalese needed to transfer or sell her business in anticipation of surgery. To stave off losing her life's work from a surgical mishap, she sought opinions from a dozen neurosurgeons. They reassured her that a routine surgery like this would be effective with little chance of neurological collateral damage. She did not believe them. In her business she had treated numerous exhausted professionals. Many surgeons with whom she worked professionally frequently referred patients to her. She had seen the poor self-care that many surgeons and doctors brought on themselves in the form of unrelenting stress, drinking, bad eating habits, and even drugs. This made her nervous and untrusting about the care she could receive at the hands of an overworked or impaired surgeon. She scheduled appointments with every neurosurgeon she could find and interviewed them relentlessly, looking for the slightest sign of incompetence, unprofessionalism, antipathy, or lapse in compassion. Given her insistence and dogged nature, she usually found what she was looking for. She would bring her research to the appointments and interview the neurosurgeons on what other doctors had opined. If they were incredulous of research she brought or a technique on which she inquired, they were summarily dismissed.At first glance, which is likely all that she got from many of her visits, these encounters put a spotlight on a 'difficult' patient refusing care. The deeper look that my patient deserved revealed a personal narrative of the oldest child who survived a broken home riddled with drug use and prostitution. She learned to rely on only herself for protection. She took unapologetic control of her fate. Her own mother had at one time offered my patient work as a prostitute. Her father was no better in providing protection and a decent upbringing. He had left her as an eight-year-old with the neglectful mother and four younger siblings to fend for herself, which she did against the odds. She suffered physical, emotional, and spiritual abuse.As an adult, her strong sense of selfhood and boundaries allowed her to have a guarded relationship with both of her parents at a comfortable emotional distance. Her mission and passionate drive to help others heal saved her life. In healing others, she was healing herself. Importantly, her experience marked for her indelibly that while she could do this for herself, others were not reliable and could not heal her. She had only ever trusted and relied upon herself. She was the only one who had never let her down. She was terrified that this might be the first time. The potential surgery risked her cognition, physical capacities, and ability to care for herself. The risk was too great.We met numerous times, uncovering her past, reliving the stories of her tumultuous background, and examining how she established her place in the world away from the horrors of her insecure childhood. She took in my reaction to her stories and saw the horror on my face when I tried to imagine a world where one's parents were not only neglectful but the source of danger. Through my reaction, she may have begun to have some compassion for her own story and put the pieces together. One several occasions, she became enraged when I didn't meet her expectations, or I didn't entertain the diatribe of neurosurgical scholarly work.On one of those... (shrink)

The current institutional focus on patient satisfaction and on surveys designed to assess this could eventually compromise the quality of health care while simultaneously raising its cost. We begin this paper with an overview of the concept of patient satisfaction, which remains poorly and variously defined. Next, we trace the evolution of patient‐satisfaction surveys, including both their useful and problematic aspects. We then describe the effects of these surveys, the most troubling of which may be their influence on the behavior (...) of health professionals. The pursuit of high patient‐satisfaction scores may actually lead health professionals and institutions to practice bad medicine by honoring patient requests for unnecessary and even harmful treatments. Patient satisfaction is important, especially when it is a response to being treated with dignity and respect, and patient‐satisfaction surveys have a valuable place in evaluating health care. Nonetheless, some uses and consequences of these surveys may actively mislead health care.Our critique of patient‐satisfaction surveys takes into consideration three different ways patients may be “satisfied.” First is the provision of medically necessary care that actually improves their outcomes. The second concerns interventions that patients or families want but that are medically unnecessary and may negatively affect health outcomes. The third category—comprising factors that are less likely to affect health outcomes but may certainly contribute to a sense of dignity and well‐being—includes “humanistic” aspects of health care, such as good communication and treating patients with respect, as well as peripheral aspects, such as convenient parking and designer hospital gowns. These distinctions are important as we explore patient satisfaction and its implications. (shrink)

Past ages of medical care are condemned in modern philosophical and medical literature as being too paternalistic. The normal account of good medicine in the past was, indeed, paternalistic in an offensive way to modern persons. Imagine a Jean Paul Sartre going to the doctor and being treated without his consent or even his knowledge of what will transpire during treatment! From Hippocratic times until shortly after World War II, medicine operated in a closed, clubby manner. The knowledge learned in (...) medicine was not shared with the patients, who were in general poorly educated and for the most part completely ignorant of the craft of medicine and the physicians. Physicians were cautioned against telling patients too much about their Illness and/or their recovery, perhaps because physicians themselves did not have an enormous armamentarium to confront disease. (shrink)

Not all hospital inpatients need the level of care uniquely available in the acute-care setting. In the United States, these longer-term, nonacute inpatients tend to be some combination of chronically ill, poor, homeless, undocumented, uninsured, and disabled—all groups who have struggled for health equity, political recognition, and voice. Even so, these “permanent patients” continue to receive care in one of the most expensive settings. This phenomenon is the result of federal legislation that creates an affirmative duty to care (...) for all able to access our emergency departments without also making safe housing available to all. A handful of federal laws and policies as well as a potpourri of state laws and policies are involved. (shrink)

Poor medication adherence in patients with a psychosis is associated with relapse. It has been proposed that outcomes might be improved by using financial incentives for treatment adherence (FITA). However, a strong moral intuition against this practice has been found. This paper examines the ethics of FITA. Three arguments are presented, which if accepted would severely restrict or even prohibit the practice. These are based on (1) “incommensurable values”, where FITA denigrates an aspect of “respect for the person”, (...) (2) “exploitation”, where unfair advantage is taken of the patient, and (3) “fairness”, where it is difficult to draw a line between those who should and should not be offered payment. A number of practical impediments are also considered. (shrink)

Scientific advances in health care have been disproportionately distributed across social strata. Disease burden is also disproportionately distributed, with marginalized groups having the highest risk of poor health outcomes. Social determinants are thought to influence health care delivery and the management of chronic diseases among marginalized groups, but the current conceptualization of social determinants lacks a critical focus on the experiences of people within their environment. The purpose of this article was to integrate the literature on marginalization and situate (...) the concept in the framework of social determinants of health. We demonstrate that social position links marginalization and social determinants of health. This perspective provides a critical lens to assess the societal power dynamics that influence the construction of the socio‐environmental factors affecting health. Linking marginalization with social determinants of health can improve our understanding of the inequities in health care delivery and the disparities in chronic disease burden among vulnerable groups. (shrink)

BackgroundNonverbal social perception is the ability to interpret the intentions and dispositions of others by evaluating cues such as facial expressions, body movements, and emotional prosody. Nonverbal social perception plays a key role in social cognition and is fundamental for successful social interactions. Patients with schizophrenia have severe impairments in nonverbal social perception leading to social isolation and withdrawal. Collectively, these aforementioned deficits affect patients’ quality of life. Here, we compare nonverbal social perception in patients with schizophrenia (...) and controls and examine how nonverbal social perception relates to daily functioning.MethodsWe compared nonverbal social perception in 41 stable outpatients with schizophrenia and 30 healthy controls using the Mini Profile of Nonverbal Sensitivity. The participants evaluated 64 video clips showing a female actor demonstrating various nonverbal social cues. Participants were asked to choose one of two options that best described the observed scenario. We correlated clinical ratings, Self-report of Negative Symptoms, and functional assessments with Mini-PONS scores.ResultsPatients performed significantly poorer in the Mini-PONS compared to controls, suggesting deficits in nonverbal social perception. These deficits were not associated with either positive symptoms or negative symptoms. However, impaired nonverbal social perception correlated with distinctive domains of BNSS, as well as functional capacity and functional outcome in patients.ConclusionWe demonstrate that nonverbal social perception is impaired in stable outpatients with schizophrenia. Nonverbal social perception is directly related to specific negative symptom domains, functional capacity and functional outcome. These findings underline the importance of nonverbal social perception for patients’ everyday life and call for novel therapeutic approaches to alleviate nonverbal social perception deficits. (shrink)

The question of whether a patient has insight is among the first to be considered in psychiatric contexts. There are several competing conceptions of clinical insight, which broadly refers to a patient’s awareness of their mental illness. When a patient is described as lacking insight, there are significant implications for patient care and to what extent the patient is trusted as a knower. Insight is currently viewed as a multidimensional and continuous construct, but competing conceptions of insight still lack consensus (...) on the specifics. Studies also give contradictory evidence regarding the frequency and consequences of poor insight. A number of crucial questions remain unanswered. After outlining some of the key theoretical disagreements about what insight means, I highlight ethical issues that have not received much attention in the literature. Given the conceptual ambiguities and the absence of standardised bedside tools, there are significant ethical concerns about insight assessments. I highlight two main ethical concerns, specifically that these assessments risk: marginalising patients by setting unattainable ideals for self-knowledge and minimising the patient’s own perspective on their mental health. I close with recommendations for documenting and responding to concerns about poor insight, so patients who are vulnerable to losing epistemic trust are better supported in their therapeutic relationships. (shrink)

Medical electives have long been part of the undergraduate curriculum, and many students choose to undertake a placement in a developing country. In countries where healthcare provision is hugely underresourced, students have found themselves under pressure to exceed their role. They have been expected to diagnose and treat patients without direct supervision from a qualified doctor. Some have found themselves running clinics and wards; others have found themselves to be the most qualified person available.1,2The British Medical Journal believes students (...) should not take on the role of a qualified doctor, “irrespective of any encouragement which students may receive from members of the host organisations to which they are attached”.3 This includes not diagnosing, prescribing, or treating any patient without strict clinical supervision. They feel that students fail to appreciate the dangers of treatment, particularly where familiar medical problems are complicated by unfamiliar poverty. Their deontological view is saying that students should treat their work …. (shrink)

Background Although medical ethicists and educators emphasise patient-centred decision-making, previous studies suggest that patients often prefer their doctors to make the clinical decisions. Objective To examine the associations between a preference for physician-directed decision-making and patient health status and sociodemographic characteristics. Methods Sociodemographic and clinical information from all consenting general internal medicine patients at the University of Chicago Medical Center were examined. The primary objectives were to (1) assess the extent to which patients prefer an active role (...) in clinical decision-making, and (2) determine whether religious service attendance, the importance of religion, self-rated spirituality, Charlson Comorbidity Index, self-reported health, Vulnerable Elder Score and several demographic characteristics were associated with these preferences. Results Data were collected from 8308 of 11 620 possible participants. Ninety-seven per cent of respondents wanted doctors to offer them choices and to consider their opinions. However, two out of three (67%) preferred to leave medical decisions to the doctor. In multiple regression analyses, preferring to leave decisions to the doctor was associated with older age (per year, OR=1.019, 95% CI 1.003 to 1.036) and frequently attending religious services (OR=1.5, 95% CI 1.1 to 2.1, compared with never), and it was inversely associated with female sex (OR=0.6, 95% CI 0.5 to 0.8), university education (OR=0.6, 95% CI 0.4 to 0.9, compared with no high school diploma) and poor health (OR=0.6, 95% CI 0.3 to 0.9). Conclusions Almost all patients want doctors to offer them choices and to consider their opinions, but most prefer to leave medical decisions to the doctor. Patients who are male, less educated, more religious and healthier are more likely to want to leave decisions to their doctors, but effects are small. (shrink)

Extracorporeal membrane oxygenation (ECMO) is typically viewed as a time-limited intervention—a bridge to recovery or transplant—not a destination therapy. However, some patients with decision-making capacity request continued ECMO support despite a poor prognosis for recovery and lack of viability as a transplant candidate. In response, critical care teams have asked for guidance regarding the ethical permissibility of unilateral withdrawal over the objections of a capacitated patient. In this article, we evaluate several ethical arguments that have been made in (...) favor of withdrawal, including distributive justice, quality of life, patients’ rights, professional integrity, and the Equivalence Thesis. We find that existing justifications for unilateral withdrawal of ECMO support in capacitated patients are problematic, which leads us to conclude that either: (1) additional ethical arguments are necessary to defend this approach or (2) the claim that it is not appropriate to use ECMO as a destination therapy should be questioned. (shrink)

Patients with psychiatric illness feel the brunt of the intersection of many of our society's and our health care system's disparities, and the vulnerability of this population during the Covid‐19 pandemic cannot be overstated. Patients with psychiatric illness often suffer from the stigma of mental illness and receive poor medical care. Many patients with severe and persistent mental illness face additional barriers, including poverty, marginal housing, and food insecurity. Patients who require psychiatric hospitalization now face (...) the risk of transmission of Covid‐19 due to the inherent difficulties of social distancing within a psychiatric hospital. Patients whose freedom and self‐determination have been temporarily overruled as they receive involuntary psychiatric treatment deserve a setting that maintains their health and safety. While tele‐mental health has been rapidly expanded to provide new ways to access psychiatric treatment, some patients may have limitations in technological literacy or access to devices. The social isolation, economic fallout, and potential traumatization related to the current pandemic will disproportionately affect this vulnerable population, and society's duties to them must be considered. (shrink)

Access to clear and concise medication information is essential to support safe and effective use of prescription drugs. Patient misunderstanding of medication information is a common reason for non-adherence to medication regimens and a leading cause of outpatient medication errors and adverse drug events in the U.S. Medication errors are the most common source of risk to patient safety, leading to poor health outcomes, hospitalizations, and deaths. Over half a million adverse drug events occur in the outpatient setting each (...) year at a cost of approximately $1 billion annually.Nearly half of adults in the U.S. experience difficulty understanding and acting upon health information. Even individuals with high levels of general literacy may find medication information difficult to understand or use. The risk of misunderstanding medication information is compounded for patients with limited English proficiency who may not have access to this information in their own language. (shrink)

Moral injury occurs when a person perpetrates, bears witness to, or fails to prevent an act that transgresses their deeply held moral beliefs. The deeply held moral belief that physicians share is the oath they take when completing their lengthy training and embarking on their career: Put the needs of patients first. In today's American healthcare system, doctors, nurses, and other healthcare providers are increasingly forced to consider the demands of other stakeholders -- insurers, hospitals, even their own financial (...) security -- before the needs of their patients. Whenever they are forced to make a decision that contravenes their patient's best interest, they feel a sting of moral injustice. Over time, these repetitive insults amass into moral injury. Moral injury and its causes help explain why healthcare workers started leaving the field in droves long before the COVID-19 pandemic exposed weaknesses in the US system, why a rich country has such poor outcomes in certain categories, why there is a shortage of young doctors training for critical areas, and why patients feel so frustrated. In If I Betray These Words, Wendy Dean explores and exposes the impacts of moral injury through vividly told stories that are at once bewildering and eye-opening. Her book serves as a roadmap through a healthcare landscape that can be confounding, and at times even hellish, for those who must navigate it, and it suggest alternative routes for healers and their patients. (shrink)

:This article considers recent ethical topics relating to medical AI. After a general discussion of recent medical AI innovations, and a more analytic look at related ethical issues such as data privacy, physician dependency on poorly understood AI helpware, bias in data used to create algorithms post-GDPR, and changes to the patient–physician relationship, the article examines the issue of so-called robot doctors. Whereas the so-called democratization of healthcare due to health wearables and increased access to medical information might suggest a (...) positive shift in the patient-physician relationship, the physician’s ‘need to care’ might be irreplaceable, and robot healthcare workers might be seen as contributing to dehumanized healthcare practices. (shrink)

Past ages of medical care are condemned in modern philosophical and medical literature as being too paternalistic. The normal account of good medicine in the past was, indeed, paternalistic in an offensive way to modern persons. Imagine a Jean Paul Sartre going to the doctor and being treated without his consent or even his knowledge of what will transpire during treatment! From Hippocratic times until shortly after World War II, medicine operated in a closed, clubby manner. The knowledge learned in (...) medicine was not shared with the patients, who were in general poorly educated and for the most part completely ignorant of the craft of medicine and the physicians (but not, perhaps, of folk medicine). Physicians were cautioned against telling patients too much about their Illness and/or their recovery, perhaps because physicians themselves did not have an enormous armamentarium to confront disease. (shrink)

Physician-patient communication is not optimal. It suffers from an imbalance of information and power, misunderstandings and incomplete information transferred between the parties, and time constraints. Time constraints are due to patient volume, physician responsibilities, and explicit or implicit time restrictions imposed by patient insurers or physician employers. Communication is also complicated by a hesitancy to ask questions or give specific information, delays in accessing parties to transfer important information (usually, it is difficult to contact or recontact the physician), and (...) class='Hi'>poor communication skills. These difficulties do not universally exist among patients and clinicians—but are common enough to be discussed regularly in medical journals and in the popular media. Some of these problems are more frequently encountered in certain patient or physician subsets (e.g., certain medical specialties, practice locations, patient age groups, and cultural groups). (shrink)

There has been a tremendous increase in interest in bioethics, which has come in direct response to the substantial advances in biomedical research and medical technology over the past 30 years. The more sophisticated medical science and technology becomes, the more sophisticated are questions that are raised: Who has the right to decide whether a medical treatment should be initiated, continued, or stopped? How much information are healthcare professionals required to give to patients? When should a patient's right to (...) confidentiality be violated? When, if ever, is active or passive euthanasia or abortion justified, and who has the right to decide on these issues? (shrink)

Objectives To conduct an independent evaluation of the first phase of the Health Foundation’s Safer Patients Initiative (SPI), and to identify the net additional effect of SPI and any differences in changes in participating and non-participating NHS hospitals. Design Mixed method evaluation involving five substudies, before and after design. Setting NHS hospitals in the United Kingdom. Participants Four hospitals (one in each country in the UK) participating in the first phase of the SPI (SPI1); 18 control hospitals. Intervention The (...) SPI1 was a compound (multi-component) organisational intervention delivered over 18 months that focused on improving the reliability of specific frontline care processes in designated clinical specialties and promoting organisational and cultural change. Results Senior staff members were knowledgeable and enthusiastic about SPI1. There was a small (0.08 points on a 5 point scale) but significant (P<0.01) effect in favour of the SPI1 hospitals in one of 11 dimensions of the staff questionnaire (organisational climate). Qualitative evidence showed only modest penetration of SPI1 at medical ward level. Although SPI1 was designed to engage staff from the bottom up, it did not usually feel like this to those working on the wards, and questions about legitimacy of some aspects of SPI1 were raised. Of the five components to identify patients at risk of deterioration—monitoring of vital signs (14 items); routine tests (three items); evidence based standards specific to certain diseases (three items); prescribing errors (multiple items from the British National Formulary); and medical history taking (11 items)—there was little net difference between control and SPI1 hospitals, except in relation to quality of monitoring of acute medical patients, which improved on average over time across all hospitals. Recording of respiratory rate increased to a greater degree in SPI1 than in control hospitals; in the second six hours after admission recording increased from 40% (93) to 69% (165) in control hospitals and from 37% (141) to 78% (296) in SPI1 hospitals (odds ratio for “difference in difference” 2.1, 99% confidence interval 1.0 to 4.3; P=0.008). Use of a formal scoring system for patients with pneumonia also increased over time (from 2% (102) to 23% (111) in control hospitals and from 2% (170) to 9% (189) in SPI1 hospitals), which favoured controls and was not significant (0.3, 0.02 to 3.4; P=0.173). There were no improvements in the proportion of prescription errors and no effects that could be attributed to SPI1 in non-targeted generic areas (such as enhanced safety culture). On some measures, the lack of effect could be because compliance was already high at baseline (such as use of steroids in over 85% of cases where indicated), but even when there was more room for improvement (such as in quality of medical history taking), there was no significant additional net effect of SPI1. There were no changes over time or between control and SPI1 hospitals in errors or rates of adverse events in patients in medical wards. Mortality increased from 11% (27) to 16% (39) among controls and decreased from 17% (63) to 13% (49) among SPI1 hospitals, but the risk adjusted difference was not significant (0.5, 0.2 to 1.4; P=0.085). Poor care was a contributing factor in four of the 178 deaths identified by review of case notes. The survey of patients showed no significant differences apart from an increase in perception of cleanliness in favour of SPI1 hospitals. Conclusions The introduction of SPI1 was associated with improvements in one of the types of clinical process studied (monitoring of vital signs) and one measure of staff perceptions of organisational climate. There was no additional effect of SPI1 on other targeted issues nor on other measures of generic organisational strengthening. (shrink)

Background and aim Healthcare professionals are regularly exposed to moral challenges in patient care potentially compromising quality of care and safety of patients. Preventive clinical ethics support aims to identify and address moral problems in patient care at an early stage of their development. This study investigates the occurrence, risk factors, early indicators, decision parameters, consequences and preventive measures of moral problems. Method Semi-structured expert interviews were conducted with 20 interprofessional healthcare professionals from 2 university hospitals in Basel, Switzerland. (...) A Likert scale questionnaire was completed by the interviewees and analysed using descriptive and inferential statistics. Results Healthcare professionals are frequently exposed to a variety of moral problems, such as end-of-life decisions, resource allocation and assessing the patient's will or decisional capacity. Thirty-four different risk factors for moral problems are identified, e.g. patient vulnerability, divergent values or world views, inadequate resources or poor ethical climate. Twenty-one early indicators are recognised such as disagreement between healthcare professionals, patients and relatives, emotional disturbances, gut feeling or conflict of conscience. A variety of preventive measures are suggested and presented in a preventive clinical ethics support process model. The most helpful measures are early ethical conversations with colleagues, early team-internal ethical case discussions and an ethics-trained contact person on the ward. Ethics training, kerbside consultations, proactive ethics consultations, ethics screening and rounds are also considered helpful. Conclusions Clinical ethics support services should not only offer reactive and complex, but also proactive and low-threshold support for healthcare professionals, patients and relatives. (shrink)

In 1999, Médecins Sans Frontières set out to explore and demonstrate the feasibility of preventing and treating HIV/AIDS in a so-called resource-poor, economically and socially disadvantaged setting. The first MSF mission to incorporate antiretroviral treatment into its HIV-AIDS-oriented medical program was undertaken in Bangkok. The second project was launched in Khayelitsha where MSF has been providing ARV treatment for persons with HIV/AIDS since May 2001. Khayelitsha is an enclave of some 500,000 inhabitants, most of whom live in corrugated-iron shacks, (...) without running water or electricity. Unemployment is extremely high; crime and violence are rampant. The general prevalence of HIV/AIDS is 26%, measured among pregnant women. The tuberculosis incidence rate is one of the world's highest for open-space sites. Unsurprisingly, TB/HIV coinfection is very high too: 63% of those with TB are also infected with HIV. (shrink)

There is growing evidence demonstrating that nursing students encounter unsafe and poor clinical practice when on clinical placement. The impact on nursing students remains relatively under‐explored, especially in the Australian context. This two‐phased qualitative study used Interpretive Description to explore 53 pre‐registration nursing students’ perceptions and experiences of speaking up for patient safety. Results of the study identified students believe speaking up is the right thing to do, and their professional responsibility. The study results add to previous research by (...) describing the dissonance students experience due to the inconsistencies between what is taught at university and performed in practice. Student's distress arises when observing nurses taking short cuts, justifying such actions and making excuses about poor practice. Students report experiencing dissonance, bewilderment and confusion and at times, anger when observing poor practice. The clinical environment culture influences students’ decisions to speak up or remain silent. Understanding students’ perceptions and responses will promote awareness and discussion essential to the future development of curricula and clinical support strategies that will enable students to speak up. (shrink)

An important role for all health care professionals is to be an advocate for their patients, and there is no question that many patients need advocacy to reach their health care goals. The role of advocate takes many forms, but one is to speak up when one is concerned for the safety or well‐being of a patient. A nurse is often the member of a health care team most likely to notice changes that might signal problems or (...) class='Hi'>poor responses to treatment. The duty of the nurse is to speak up in a timely and urgent manner when the nurse believes—or fears—that the patient's safety may be at risk. Yet the role of nurses as advocates for their patients has assumed near‐mythic status. Rather than seeing advocate as one among many equally important and interrelated professional roles, the nurse, when asked, “Who are you?” is likely to give the heartfelt and passionate answer, “The patient's advocate!” This essay examines and critically analyzes the advocacy role adopted by the nursing profession and outlines the challenges it has created to nursing's contributions to collaborative practice, ethics, and policy in health care. (shrink)

Background: Achieving a “good death” is a major goal of palliative care. Nurses play a key role in the end-of-life care of older patients. Understanding the perceptions of both older patients and nurses in this area could help improve care during this period. Objectives: To examine and compare the preferences and perceptions of older patients and nurses with regard to what they feel constitutes a “good death.” Research design: A cross-sectional study. Participants and research context: This study (...) employed a self-report questionnaire that asked about various options for end-of-life care. It was distributed to older patients who attended the outpatient clinic of internal medicine and nurses who worked at two medical schools in Thailand from September 2017 to February 2018. Patients were asked to respond to the questions as if they were terminally ill, and nurses were asked to imagine how older patients would answer the questions. Ethical consideration: Approval from Institutional Review Board was obtained. Findings: A total of 608 patients and 665 nurses responded to the survey. Nurses agreed with concepts of palliative care, but they rated themselves as having poor knowledge. The patient respondents felt that it was most important that they receive the full truth about their illnesses. The nurses thought the most important issue was relief of uncomfortable symptoms. On seven out of the 13 questions, nurses overestimated the importance of the relevant issue to patients and underestimated the importance on one question. Discussion: Both nurses and older patients signified concepts of palliative care, but nurses felt that they lacked adequate knowledge. Nurses estimated that patients would have positive attitudes toward autonomy and the closure of life affairs to a significantly greater degree than the patient respondents. Conclusions: We recommend that palliative care education be improved and that steps be taken to allow for more effective nurse–patient communication with regard to the patients’ end-of-life wishes. (shrink)

To fulfill their crucial duty of relieving suffering in their patients, physicians may have to administer palliative sedation when they implement treatment-limitation decisions such as the withdrawal of life-supporting interventions in patients with poor prognosis chronic severe brain injury. The issue of palliative sedation deserves particular attention in adults with serious brain injuries and in neonates with severe and irreversible brain lesions, who are unable to express pain or to state their wishes. In France, treatment limitation decisions (...) for these patients are left to the physicians. Treatment-limitation decisions are made collegially, based on the presence of irreversible brain lesions responsible for chronic severe disorders of consciousness. Before these decisions are implemented, they are communicated to the relatives. Because the presence and severity of pain cannot be assessed in these patients, palliative analgesia and/or sedation should be administered. However, palliative sedation is a complex strategy that requires safeguards to prevent a drift toward hastening death or performing covert euthanasia. In addition to the law on patients' rights at the end of life passed in France on April 22, 2005, a recent revision of Article 37 of the French code of medical ethics both acknowledges that treatment-limitation decisions and palliative sedation may be required in patients with severe brain injuries and provides legal and ethical safeguards against a shift towards euthanasia. This legislation may hold value as a model for other countries where euthanasia is illegal and for countries such as Belgium and Netherlands where euthanasia is legal but not allowed in patients incapable of asking for euthanasia but in whom a treatment limitation decision has been made. (shrink)

The world famous Eltroxin saga of 2009–2011, which ignited heated public debates in Europe, Canada, and Australia, reveals the problematic nature of standalone autonomy protection cases. Eltroxin is a life-sustaining thyroid hormone replacement medicine used by millions worldwide; it was reformulated in 2008, and around 10% of patients were badly affected. Poor communication and lack of professional information triggered public hysteria as a global wave of complaints about harmful side effects, including hair loss, weight gain, extreme fatigue, headaches, (...) diarrhoea, and heightened heart rates, flooded the media. Israeli Eltroxin users (around 250 thousand people) were similarly unaware. Following many media reports and ministerial regulations, a high-profile consumer class action was launched against Perrigo, the distributor. Ten years of court proceedings culminated in a compensation settlement of approximately US$ 14 million. This relatively low sum covered the injuries of those patients who were physically affected; compensation for standalone autonomy injuries to all patients (who were denied information about changes to their life-sustaining medicine) was refused. The monetary settlement and court decision were hugely disappointing to the class plaintiffs, and a negative signal was sent to the proponents of consumers' and patients' personal autonomy. However, the class action still marked a positive change in pharmaceutical protocols for relations between health authorities, commercial pharmacy entities, and patients/consumers as seen by the proactive communication around a subsequent Eltroxin reformulation in 2020 in Israel, Europe, and South Africa (Aspen Pharmacare, 2020).1 This paper highlights the vast potential value of consumer class action proceedings, and pharmaceutical consumer (patient) class actions in particular, for public welfare and private autonomy. The paper will explain leading Israeli case law related to consumer autonomy protection in tort law and will argue that this law still holds the unique protection of autonomy as a basic human right and accordingly recognises harm to autonomy as a viable form of damage. Additionally, it illustrates why and how consumer protection class actions are an important tool for protection of human rights in general and of patients' rights in particular. (shrink)