A Turkish patient with AIDS attempted to commit suicide. Turkey is one of the countries where AIDS education in society and for health personnel has started rather late. This article documents what this patient, his sister and his friends, who helped him to survive for a short while, experienced in the hospital environment. This is a real case history and should be considered from various aspects because suicide was attempted by a person with AIDS who was near the (...) terminal stage. The patient’s friends made a remarkable effort to help him to survive. They were unsure about what to do because they had not respected his wishes and they experienced deep alienation because of the extremely negative attitude of the medical staff. (shrink)

ABSTRACT This study examined how lifestyle factors and gender affect kidney allocation to transplant patients by 99 British and Singaporean participants. Thirty hypothetical patients were generated from a combination of six factors and randomly paired four times. Participants saw 60 patient pairings and, in each pair, chose which patient would receive treatment priority. A Bradley-Terry model was used to derive coefficients for each factor per participant. A mean factor score was then calculated across all participants for each factor. (...) Participants gave lower priority to patients who drank more, were overweight, smoked more and exercised less. A patient’s diet and gender had no significant effect on allocation. There were no significant cross-cultural differences. There were moderate correlations between participants’ self-reported pre- and post-experiment ordering of decision criteria, and these measures and factor coefficients, suggesting a modest level of decision-making consistency. Between participants, moderate levels of concordance with respect to factor importance were observed for self-reported orderings of factors, and weaker agreement for model-derived coefficients. Very similar results were obtained for both British and Singaporean participants, and the implications of the findings are discussed. (shrink)

Dr. Hauptman provides us with a wonderful clinical vignette, the richness of which is measured in the range of responses it can evoke. My response will be that of a career-long psychiatric educator who has served as a clinical supervisor to many residents over the years. In this role, residents like Dr. Hauptman present their clinical work and their questions. I, in turn, try to help them to learn from their patients, improve their clinical skills, and seek answers to their (...) questions. My task at the outset is to help the resident develop a differential diagnosis, a biopsychosocial formulation of the patient’s difficulty, and a treatment plan. In other words, I work with the resident to understand who... (shrink)

This article explores the ethical concept of neutrality through use of a psychiatric clinical vignette. In this case a psychiatry resident is faced with the treatment of a patient who was found by the FBI to be in possession of child pornography. Although not accused of any other crimes, the patient was a fugitive from the law and requesting treatment for pedophilia. Faced with the pressures of limited resources and anxiety about the patient's dangerousness to others, the (...) resident and his supervisor tried to strike a balance between the ethical principles of neutrality and beneficence. Through this vignette, the importance of neutrality, as well as how it can be compromised by other pressures such as expediency and anxiety, is explored. (shrink)

Background: The development of ethical leadership approaches plays an important role in achieving better patient care. Although studies that analyze the impact of ethical leadership on ethical climate and job satisfaction have gained importance in recent years, there is no study on ethical leadership and its relation to ethical climate and job satisfaction in our country. Objectives: This descriptive and cross-sectional study aimed to determine the effect of nurses’ ethical leadership and ethical climate perceptions on their job satisfaction. Methods: (...) The study sample is composed of 285 nurses who agreed to participate in this research and who work at the internal, surgical, and intensive care units of a university hospital and a training and research hospital in İzmir, Turkey. Data were collected using Ethical Leadership Scale, Hospital Ethical Climate Scale, and Minnesota Satisfaction Scale. While the independent sample t-test, analysis of variance, Mann–Whitney U test, and Kruskal–Wallis test were used to analyze the data, the correlation analysis was used to determine the relationship between the scales. Ethical considerations: The study proposal was approved by the ethics committee of the Faculty of Medicine, Dokuz Eylül University. Findings: The nurses’ mean scores were 59.05 ± 14.78 for the ethical leadership, 92.62 ± 17 for the ethical climate, and 62.15 ± 13.46 for the job satisfaction. The correlation between the nurses’ ethical leadership and ethical climate mean scores was moderately positive and statistically significant (r = +0.625, p = 0.000), was weak but statistically significant between their ethical leadership and job satisfaction mean scores (r = +0.461, p = 0.000), and was moderately positive and statistically significant between their ethical climate and job satisfaction mean scores (r = +0.603, p = 0.000). Conclusion: The nurses’ ethical leadership, ethical climate, and job satisfaction levels are moderate, and there is a positive relationship between them. The nurses’ perceptions of ethical leadership are influenced by their educational status, workplace, and length of service. (shrink)

Research to improve the health of pregnant and fetal patients presents ethical challenges to clinical investigators, institutional review boards, funding agencies, and data safety and monitoring boards. The Common Rule sets out requirements that such research must satisfy but no ethical framework to guide their application. We provide such an ethical framework, based on the ethical concept of the fetus as a patient. We offer criteria for innovation and for Phase I and II and then for Phase III clinical (...) trials to improve the health of pregnant patients and of fetal patients and also criteria to responsibly manage the transition from investigation to clinical practice. Basing ethical criteria for research involving pregnant women on the ethical concept of the fetus as a patient insulates the proposed ethical framework and therefore research on pregnant women from the divisive and politicized concepts and discourses of personhood, fetal rights, and unborn child. (shrink)

The standard approach to treatment decision making for incapacitated patients often fails to provide treatment consistent with the patient’s preferences and values and places significant stress on surrogate decision makers. These shortcomings provide compelling reason to search for methods to improve current practice. Shared decision making between surrogates and clinicians has important advantages, but it does not provide a way to determine patients’ treatment preferences. Hence, shared decision making leaves families with the stressful challenge of identifying the patient’s (...) preferred treatment option. To address this concern, the present paper proposes to incorporate the use of a “Patient Preference Predictor” (PPP) into the shared decision-making process between surrogates and clinicians. A PPP would predict which treatment option a given incapacitated patient would most likely prefer, based on the individual’s characteristics and information on what treatment preferences are correlated with these characteristics. Use of a PPP is likely to increase the chances that incapacitated patients are treated consistent with their preferences and values and might reduce the stress and burden on their surrogates. Including a PPP in the shared decision-making process therefore has the potential to realize important ethical goals for making treatment decisions for incapacitated patients. The present paper justifies this approach on conceptual and normative grounds. (shrink)

연명의료결정법이 법제화되어 시행되고 있다는 점에 착안하여 필자는 인간다운 죽음, 품위 있는 죽음이 시대의 중요한 쟁점임을 강조하면서 출발한다. 그렇다면 인간다운 죽음이란 무엇인가. 인간의 존엄성을 지키며 죽음을 맞이할 수 있는 인간다운, 품위있는 죽음이란 무엇인가. 이 물음은 결국 육체에만 집중되는 육체집착적 치료를 비판하고 있는 것이며 이러한 요인이 오늘날 무의미한 연명의료의 원인임을 규명한다. 그렇다면 연명의료결정법의 시행으로 인간다운 죽음은 실현될 수 있는가. 이러한 문제의식 하에 필자는 첫째, 현재 시행 중인 연명의료결정법의 주요 내용을 살펴본 후 연명의료 중단대상 환자 범위를 통한 그것의 문제점을 고찰하고자 한다. 그 과정에서 (...) 연명의료 중단대상 범위를 임종과정 환자로 제한시킴으로써 무분별한 연명의료중단의 확산을 방지하고, 또한 그것이 소극적 안락사의 간접적 허용과 구별시키기 위해서라는 점을 도출해낸다. 둘째, 그렇다면 연명의료중단 대상에 포함되지 않는 환자는 어떻게 인간다운 죽음을 실현시킬 수 있는가. 이에 대한 논의를 필자는 연명의료결정법의 또 다른 한 축인 ‘호스피스 완화의료’에서 논의하고자 한다. 셋째, 우리가 호스피스 의료를 호스피스 돌봄 또는 호스피스 활동이라고 명명하는데, 필자가 지정하는 호스피스 철학이라는 하나의 패러다임이 과연 연명의료결정법의 호스피스 완화의료에서 얼마나 유효한가를 고찰하는데 있다. 결국 연명의료결정법은 한편으로는 죽을 권리 대신 생명 종료 시점을 결정할 권리로서 죽음에 임박한 상태에서 인간으로서의 존엄과 가치를 지키기 위하여 연명치료의 거부 또는 중단을 결정할 수 있는 자기결정권의 인정임을 강조하는데 그 의미가 있다. 그리고 다른 한편으로는 우리나라 근대의료가 도외시했던 환자의 ‘주체성’에 대한 새로운 관심을 불러일으키며, 환자의 주체성이 어떻게 실현될 것인지를 중요한 과제로 촉발시켰다고 필자는 판단한다. 종래의 의료가 삶의 연장에 중점을 둔다면 연명의료결정법은 환자를 단순한 치료의 대상이 아닌 치료의 주체로, 즉 ‘치료의 대상에서 치료의 주체에로의 전환’ 이라는 패러다임 전환의 돌파구를 마련했다고 생각한다. (shrink)

AimIn case of extremely rare diseases, case reports are often the only experience to draw from for evidence-based management. Carmi syndrome is a rare, mostly lethal combination of junctional epidermolysis bullosa and pyloric atresia. During an ethical board, there were differences in perception of mortality rate. We tested the hypothesis that the cumulative mortality of single case reports is lower than that of multiple case series.CaseA baby girl was born at 33 weeks gestation with Carmi syndrome. The treatment options discussed (...) in an interdisciplinary ethics board were a palliative approach versus surgical gastrojejunostomy. Because about one third of operated children described in case reports survived, we opted for surgical treatment. The patient died a painful death 4 weeks later.MethodsThe PubMed database was systematically searched for reports of Carmi syndrome. Single case reports were compared to case series in terms of outcome.ResultsA total of 102 cases of Carmi syndrome were identified in the literature. Mortality of single case reports was 17 out of 27 patients (63%), while that of case series was higher at 62 out of 74 patients (84%,p = 0.036).ConclusionsSelection and publication bias may lead to inflation of survival rates in single case reports because successful cases are more likely to be published in the literature. These biases may lead to inappropriately aggressive treatment in futile cases. Clinicians should be cautious when discussing prognosis and making decisions based on the cumulative experience of case reports of extremely rare or novel diseases. (shrink)

Illness and hospitalization are sources of vulnerability; they arguably endow nurses and midwives with the moral obligation to develop caring relationships with patients. Fairness and the equal treatment of patients are central to moral practice; current government publications are giving this political emphasis. This article argues that patient partiality is one factor that may result in insidiously unequal caregiving. Data generated during a qualitative study into professional caring suggest that patient partiality is an accepted part of everyday practice. (...) Factors such as the patient’s personality, nurse-patient familiarity and the perceived level of patients’ understanding and interest in their illness emerged as possible sources of partiality and influence on practitioners’ interactions with patients. The article argues that patient partiality can be managed morally if practitioners develop self-awareness and constantly reflect on the moral integrity of everyday practice. Throughout the article, unless it is stated that specific reference is being made to either nurses or midwives, reference to a nurse or practitioner denotes both. It is also emphasized that no implication is intended that any study participants provided unequal care. Rather, data are utilized solely to generate focused discussion around the concept of patient partiality. (shrink)

This study aims The aim of the study is the effect of taking treatment by patients in a timely manner, the effect of taking treatment in a timely manner in preventing the side effects of the disease, the role of taking treatment in preventing other diseases for the patient, A questionnaire was prepared via Google Drive and distributed to the population aged 25-55 years, men and women, in the city of Mecca. As for the questionnaire, it was distributed via (...) the social networking program (WhatsApp) for the purpose of distancing for fear of the presence of the Corona virus. 410 questionnaires were distributed, and 390 responses were obtained via email to the principal researcher. (shrink)

Cardiopulmonary resuscitation of a patient with an uncertain resuscitation status, and a discharging implantable cardiac defibrillator, presents a significant ethical challenge to healthcare professionals in the emergency department. Presently, no literature discusses these challenges or their implications for ethical healthcare delivery. This report will discuss the issues that arose during the management of such a case and attempt to raise awareness among healthcare professionals to ensure better preparation for similar situations.

Objectives: Evidence based patient choice seems based on a strong liberal individualist interpretation of patient autonomy; however, not all patients are in favour of such an interpretation. The authors wished to assess whether ideals of autonomy in clinical practice are more in accordance with alternative concepts of autonomy from the ethics literature. This paper describes the development of a questionnaire to assess such concepts of autonomy.Methods: A questionnaire, based on six moral concepts from the ethics literature, was sent (...) to aneurysm patients and their surgeons. The structure of the questionnaire was assessed by factor analysis, and item reduction was based on reliability.Results: Ninety six patients and 58 surgeons participated. The questionnaire consisted of four scales. Two of the scales reflected the paternalistic and consumerist poles of the liberal individualist model, one scale reflected concepts of Socratic autonomy and of procedural independence, and the fourth scale reflected ideals of risk disclosure.Discussion: The Ideal Patient Autonomy Scale is a 14 item normative instrument. It is clearly distinct from the generally used psychological preference questionnaires that assess preferences for physician-patient roles. (shrink)

Background There is a high incidence of burns in China and the sequelae of post-burn scar growth, disfigurement, and other body image disorders can cause serious psychological distress to burns patients, and negatively affecting the patient’s dignity. However, there is limited knowledge relating to the dignity of burns patients. Aim To investigate the factors that affect dignity in burns patients. Design Cross-sectional study. Participants and research context We recruited 323 burn patients from the burn unit of a tertiary care (...) hospital. The Patient Dignity Scale, Burn Specific Health Scale-Brief, Hospital Anxiety and Depression Scale were used to assess burn patients’ dignity, quality of life, anxiety, and depression, respectively. 18 sociodemographic variables were included in the questionnaire. Ethical considerations Before the data were collected, the study protocol was reviewed and approved by the Ethics Committee of the Guangzhou Red Cross Hospital of Jinan University (Reference: 2022-149-02) and all patients provided and signed informed consent forms. Findings This study included 323 burns patients; of these, 26 (8%) had a mild loss of dignity, 94 (29.1%) had a moderate loss of dignity, 125 (38.7%) had a severe loss of dignity, and 78 (24.1%) had a very severe loss of dignity. The main factors that influence the loss of dignity in burns patients, including the department in which the patient was treated after their burns, gender, the clinical stage of the burn, quality-of-life, depression, resident medical insurance, the cause of the burn, and the burn site. Conclusions In most cases, the loss of dignity after burn injury is serious. Clinical health care professionals can provide personalized whole-life dignity care for patients by considering the factors that affect the dignity of burns patients, developing targeted dignity management programs, and implementing individualized interventions to maintain dignity, thus helping burns injury patients return to social life and work. (shrink)

“Bodily autonomy” has received significant attention in bioethics, medical ethics, and medical law in terms of the general inviolability of a patient’s bodily sovereignty and the rights of patients to make choices (e.g., reproductive choices) that concern their own body. However, the role of the body in terms of how it can or does contribute to a patient’s capacity for, or exercises of their autonomy in clinical decision-making situations has not been explicitly addressed. The approach to autonomy in (...) this paper is aligned with traditional theories that conceive autonomy in terms of an individual’s capacities for, and exercises of rational reflection. However, at the same time, this paper extends these accounts by arguing that autonomy is, in part, embodied. Specifically, by drawing on phenomenological conceptions of the experience of autonomy, we argue that, in principle, the body is a necessary component of the capacity for autonomy. Secondly, through the presentation of two different cases, we highlight ways in which a patient’s body can contribute to the autonomy of treatment choices. Ultimately, we hope to encourage others to explore additional conditions under which a concept of embodied autonomy should be employed in medical decision making, how its underlying principles might be operationalised in clinical situations, and its consequences for approaches to patient autonomy in healthcare practice, policy, and law. (shrink)

The principle of patient autonomy dominates the contemporary debate over medical ethics. In this examination of the doctor-patient relationship, physician and philosopher Alfred Tauber argues that the idea of patient autonomy -- which was inspired by other rights-based movements of the 1960s -- was an extrapolation from political and social philosophy that fails to ground medicine's moral philosophy. He proposes instead a reconfiguration of personal autonomy and a renewed commitment to an ethics of care. In this formulation, (...) physician beneficence and responsibility become powerful means for supporting the autonomy and dignity of patients. Beneficence, Tauber argues, should not be confused with the medical paternalism that fueled the patient rights movement. Rather, beneficence and responsibility are moral principles that not only are compatible with patient autonomy but strengthen it. Coordinating the rights of patients with the responsibilities of their caregivers will result in a more humane and robust medicine.Tauber examines the historical and philosophical competition between facts and values in medicine. He analyzes the shifting conceptions of personhood underlying the doctor-patient relationship, offers a "topology" of autonomy, from Locke and Kant to Hume and Mill, and explores both philosophical and practical strategies for reconfiguring trust and autonomy. Framing the practicalities of the clinical encounter with moral reflections, Tauber calls for an ethical medicine in which facts and values are integrated and humane values are deliberately included in the program of care. (shrink)

Objectives: The aim of this study is to evaluate the views of cancer patients on patient rights in the context of the right to information and autonomy according to articles related to the issue in the “Patient Rights Regulation”. Methods: The research was conducted among cancer patients in the medical oncology department of a research and practice hospital using a random sampling method between June and September 2005. Data were collected during face-to-face interviews using a questionnaire. Results: There (...) was a high rate of positive response to the items that the patients have the right to be informed (86.5%), that the physician should inform the patient on the diagnosis and the treatment (92.3%) and that the physician is obliged to inform the patient (76.9%). Only 43.3% of the patients stated that the patient has the right to refuse the treatment recommended by the physician. The participants mostly agreed that the patient should participate in decisions about the treatment and that patient consent should be given (78.8%). Conclusions: There are extensive efforts in Turkey towards making patient rights a significant supportive component of health services. For patient rights to become a natural part of medical practice it is necessary to give priority to education of both patients and physicians about patient rights and to lay emphasis on an ethical approach in the patient–physician relationship. (shrink)

Respect for autonomy is a key concept in contemporary bioethics and in ethics at the end of life in particular. An individualistic interpretation of autonomy may not incorporate the aspects of consideration that patients may have for their wider construct of personhood, which includes their love and consideration for their families. This anonymous case describes the intricacies of a patient’s decision making at the end of life, the choices she made, and how her decisions changed as her situation evolved. (...) The tension this produced within the medical team is unpacked using a lens of compassionate care in the intensive care unit. (shrink)

Evidence based medicine has had an increasing impact on primary care over the last few years. In the UK it has influenced the development of guidelines and quality standards for clinical practice and the allocation of resources for drug treatments and other interventions. It has informed the thinking around patient involvement in decision making with the concept of evidence based patient choice. There are, however, concerns among primary care clinicians that evidence based medicine is not always relevant to (...) primary care and that undue emphasis placed on it can lead to conflict with a clinician’s duty of care and respect for patient autonomy. In this paper we consider the impact of evidence based medicine on primary care, and the ethical implications of its increasing prominence for clinicians and managers in primary care. (shrink)

BackgroundThis manuscript presents a framework to guide the identification and assessment of ethical opportunities and challenges associated with electronic patient records (EPR). The framework is intended to support designers, software engineers, health service managers, and end-users to realise a responsible, robust and reliable EPR-enabled healthcare system that delivers safe, quality assured, value conscious care.MethodsDevelopment of the EPR applied ethics framework was preceded by a scoping review which mapped the literature related to the ethics of EPR technology. The underlying assumption (...) behind the framework presented in this manuscript is that ethical values can inform all stages of the EPR-lifecycle from design, through development, implementation, and practical application.ResultsThe framework is divided into two parts: context and core functions. The first part ‘context’ entails clarifying: the purpose(s) within which the EPR exists or will exist; the interested parties and their relationships; and the regulatory, codes of professional conduct and organisational policy frame of reference. Understanding the context is required before addressing the second part of the framework which focuses on EPR ‘core functions’ of data collection, data access, and digitally-enabled healthcare.ConclusionsThe primary objective of the EPR Applied Ethics Framework is to help identify and create value and benefits rather than to merely prevent risks. It should therefore be used to steer an EPR project to success rather than be seen as a set of inhibitory rules. The framework is adaptable to a wide range of EPR categories and can cater for new and evolving EPR-enabled healthcare priorities. It is therefore an iterative tool that should be revisited as new EPR-related state-of-affairs, capabilities or activities emerge. (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)

Although the principle of respect for personal autonomy has been the subject of debate for almost 40 years, the conversation has often suffered from lack of clarity regarding the philosophical traditions underlying this principle. In this article, I trace a genealogy of autonomy, first contrasting Kant’s autonomy as moral obligation and Mill’s teleological political liberty. I then show development from Mill’s concept to Beauchamp and Childress’ principle and to Julian Savulescu’s non-teleological autonomy sketch. I argue that, although the reach for (...) a new principle to guide choices in physician–patient relationships can rightfully be seen as important, the notion that is now called autonomy within bioethics has corollaries that undermine critical aspects of medical care. As such, there is need for a richer account of the interplay between the free choice of patients and the informed recommendations of doctors. (shrink)

Background: Nurses have always been known as an advocate for the rights of patients. The recognition of what is perceived as the violation of patients’ rights can help nurses to understand patients’ concerns and priorities. Thus, it helps nurses play their supportive roles more effectively. Objective: The aim of this study was to explore different dimensions of the violation of patients’ rights. Research design: Data were collected utilizing unstructured interviews and field notes. Data analysis was conducted using the qualitative content (...) analysis approach. Prolonged engagement, maximum variation sampling, and member check were among the factors which enriched the research. Participants and research context: The sample consisted of 18 patients and 11 members of their families. They were purposively selected from two hospitals in Tehran during 2009–2012. Ethical considerations: The research was approved by the Ethics Committee of the university and hospitals. Finding: The patients’ rights were violated in a variety of ways. There were three main dimensions to this issue: (a) care recession including deprivation of the caregiver’s presence and the delay/lack of needed responses; (b) receiving mechanical care including superficiality, lack of emotion, and failure to understand the situation; and (c) being disrespected including humility and aggression. Conclusion: The patients and their families consider any shortcomings in relation to the patient and the quality of care as the violation of the rights. The findings of the study imply sensitizing managers toward providing appropriate conditions as well as educating nurses to observe patients’ rights. It is suggested that the processes leading to the violation of patients’ rights be discovered and prevented in the future. (shrink)

A key ethical issue arising in data linkage research relates to consent requirements. Patients’ consent preferences in the context of health research have been explored but their consent preferences regarding data linkage specifically have been under-explored. In addition, the views on data linkage are often those of patient groups. As a result, little is known about lay people’s views and their preferences about consent requirements in the context of data linkage. This study explores lay people’s views and justifications regarding (...) the acceptability of conducting data linkage research without obtaining consent. (shrink)

From the start, I followed the case of Jahi McMath with great interest. In December 2013, she clearly fulfilled the diagnostic criteria for brain death. As a neurologist with a special interest in chronic brain death, I was not surprised that, after she was flown to New Jersey, where she became statutorily resurrected and was treated as a comatose patient, Jahi's condition quickly improved. In 2014, her family reported that she sometimes responded to simple motor commands. I shared the (...) general skepticism regarding these reports, assuming that the family was in denial and was misinterpreting spinal myoclonus (a rapid, involuntary twitch generated by the spinal cord) as volitional. The family had noticed that when Jahi's heart rate was above eighty beats per minute, she was more likely to respond, as though the heart rate reflected some sort of inner level of arousal. So they began to make video recordings. I have been privileged to be entrusted with copies of these recordings, forty‐eight of which proved suitable for assessing alleged responsiveness. All have been certified by a forensic video expert as unaltered. The first thing that struck me was that the great majority of the alleged responses were not spinal myoclonus. In fact, they did not resemble any type of spontaneous, involuntary movement described in patients paralyzed from high spinal cord lesions. (shrink)

Advances in genomics have led to calls for developing population-based preventive genomic sequencing programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should have over the generation, use, and handling of their genomic information. In this article we examine whether PGS programs should offer individuals the opportunity to selectively opt out of the (...) sequencing or analysis of specific genomic conditions or whether PGS should be implemented using an all-or-nothing panel approach. We conclude that any responsible scale-up of PGS will require a menu approach that may seem impractical to some, but that draws its justification from a rich mix of normative, legal, and practical considerations. (shrink)

A typical problem of modern medicine results from the gap between scientific knowledge and its application in individual cases. Whereas scientific knowledge is generalized and impersonal information, medical practice takes place under conditions which are singular, individual and irreversible. The paper examines whether prognosis is able to bridge this gap or hiatus theoreticus. It is shown that diagnosis of a single case always relies on prognostic considerations. The individual prognosis (as distinguished from the nosologic prognosis of a certain disease) enables (...) doctors to apply scientific knowledge and practice according to the actual situation, the history and personal preferences of the patient. Prognosis – not diagnosis – therefore legitimizes medical interference. A methodology of individual prognosis as the basis for a theory of practice is discussed. (shrink)

The work of Sankary et al. (2022) provides valuable insights into the experiences of participants exiting brain device research. Empirical bioethics research such as this is critical to understandi...

The success of deep brain stimulation (DBS) for movement disorders and the improved understanding of the neurobiologic and neuroanatomic bases of psychiatric diseases have led to proposals to expand current DBS applications. Recent preclinical and clinical work with Alzheimer's disease and obsessive-compulsive disorder, for example, supports the safety of stimulating regions in the hypothalamus and nucleus accumbens in humans. These regions are known to be involved in addiction and overeating associated with obesity. However, the use of DBS targeting these areas (...) as a treatment modality raises common ethical considerations, which include informed consent, coercion, enhancement, threat to personhood, and manipulation of the reward center. Pilot studies for both of these conditions are currently investigational. If these studies show promise, then there is a need to address the ethical concerns related to the initiation of clinical trials including the reliability of preclinical evidence, patient selection, study design, compensation for participation and injury, cost-effectiveness, and the need for long-term follow-up. Multidisciplinary teams are necessary for the ethical execution of such studies. In addition to establishing safety and efficacy, the consideration of these ethical issues is vital to the adoption of DBS as a treatment for these conditions. We offer suggestions about the pursuit of future clinical trials of DBS for the treatment of addiction and overeating associated with obesity and provide a framework for addressing ethical concerns related to treatment. (shrink)

Physician assistants (PAs), nurse practitioners (NPs), and medical residents constitute an increasingly significant part of the American health care workforce, yet patient assent to be seen by nonphysicians is only presumed and seldom sought. In order to assess the willingness of patients to receive medical care provided by nonphysicians, we administered provider preference surveys to a random sample of patients attending three emergency departments (EDs). Concurrently, a survey was sent to a random selection of ED residents and PAs. All (...) respondents were to assume the role of patient when presented with hypothetical clinical scenarios and standardized provider definitions. Despite presumptions to the contrary, ED patients are generally unwilling to be seen by PAs, NPs, and residents. While seldom asked in practice, 79.5% of patients fully expect to see a physician regardless of acuity or potential for cost savings by seeing another provider. Patients are more willing to see residents than nonphysicians. (shrink)

The rule of rescue describes the moral impulse to save identifiable lives in immediate danger at any expense. Think of the extremes taken to rescue a small child who has fallen down a well, a woman pinned beneath the rubble of an earthquake, or a submarine crew trapped on the ocean floor. No effort is deemed too great. Yet should this same moral instinct to rescue, regardless of cost, be applied in the emergency room, the hospital, or the community clinic? (...) -/- In health care, the desire to save lives at any cost must be reconciled with the reality of resource scarcity. As one example, the estimated cost for prophylactic Factor VIII to treat one patient with hemophilia for one year is $300,000. Costs of this magnitude have been accepted by public and private insurers in the developed world, even though, in principle, these sums could provide greater overall health benefit if allocated to pay for the unmet health care needs of many other patients. Looking forward, however, broad application of the rule of rescue will be increasingly untenable. But the moral instinct will remain: the desire to help those weakest among us, especially when their small numbers allow us to see them as unique individuals. What, then, is the ethical framework that can guide coverage and reimbursement decisions for orphan drugs into the future? (shrink)

The aim of this study was to get a deeper understanding of student nurses’ experiences of personal caring ethics by reflection on caring encounters with patients in clinical practice, ethical caring ideals, ethical problems, and sources for inner strength that give courage to practice good caring. In all, 24 Scandinavian student nurses participated voluntarily in an interview study. The interviews were analyzed within a phenomenological–hermeneutical approach and revealed three themes. The students found themselves in two different states of vulnerability: one (...) in which they were overwhelmed by their vulnerability and began to suffer themselves and the other where their vulnerability became a source of development with focus on the patient. The students’ ethical caring ideals served as fixed reference points in their ethical development, but their ideals were at risk of decline. The students reflected on the barriers for performing ethical care and nurtured their ethical ideals by providing ethical care in secret. Caring in secret occurred also when student nurses did not experience a shared ethos. (shrink)

The United Kingdom Central Council for Nursing, Midwifery and Health Visitors (UKCC) document, Exercising Accountability, states that the role of patient's advocate is an essential aspect of good professional nursing practice (1). The author examines the case for and against the nurse being the best person to act as advocate, and critically evaluates the criteria of advocacy. The problematic moral issues arising are discussed, and a case made for negotiation between the members of the multidisciplinary team and the (...) class='Hi'>patient/client (or a significant person to the patient) in order to promote the well-being of the patient and to minimise suffering. She concludes that the health care professional's (including the nurse's) role is to help people to assert control over the factors which affect their lives, that is empowerment, rather than advocacy. (shrink)

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)

Nursing professionalization is both ongoing and global, being significant not only for the nursing workforce but also for patients and healthcare systems. For this reason, it is important to have an in‐depth understanding of this process and the factors that could affect it. This literature review utilizes a welfare state approach to examine macrolevel structural determinants of nursing professionalization, addressing a previously identified gap in this literature, and synthesizes research on the relevance of studying nursing professionalization. The use of a (...) welfare state framework facilitates the understanding that the wider social, economic, and political system exercises significant power over the distribution of resources in a society, providing a glimpse into the complex politics of health and health care. The findings shed light on structural factors outside of nursing, such as country‐level education, health, labor market, and gender policies that could impact the process of professionalization and thus could be utilized to strengthen nursing through facilitating increased professionalization levels. Addressing gender inequalities and other structural determinants of nursing professionalization could contribute to achieving health equity and could benefit health systems through enhanced availability, skill‐level, and sustainability of nursing human resources, improved and efficient access to care, improved patient outcomes, and cost savings. (shrink)

Contemporary bioethical theory relies upon the concept of informed consent to protect against abuses of patient autonomy. Due to the complexity of the informed consent process, however, many patients rely more on their trust in their health care providers than they do upon their own ability to decide whether or not to give informed consent. Reformation theologian John Calvin placed a strong emphasis on the decision-maker's duty to respect the trust that others repose in the decision-maker. In keeping with (...) Calvin's concept of the duty to honor that trust, bioethics would do well to complement its current emphasis on informed consent with an emphasis on the protection of patient trust. (shrink)

Despite increased calls for hospital ethics committees to serve as default decision-makers about life-sustaining treatment for unrepresented patients who lack decision-making capacity or a surrogate decision-maker and whose wishes regarding medical care are not known, little is known about how committees currently function in these cases. This was a retrospective cohort study of all ethics committee consultations involving decision-making about LST for unrepresented patients at a large academic hospital from 2007 to 2013. There were 310 ethics committee consultations, twenty-five of (...) which involved unrepresented patients. In thirteen cases, the ethics consultants evaluated a possible substitute decision-maker identified by social workers and/or case managers. In the remaining cases, the ethics consultants worked with the medical team to contact previous healthcare professionals to provide substituted judgement, found prior advance care planning documents, or identified the patient’s best interest as the decision-making standard. In the majority of cases, the final decision was to limit or withdraw LST or to change code status to Do Not Resuscitate/Do Not Intubate. Substitute decision-makers who had been evaluated through the ethics consultation process and who made the final decision alone were more likely to continue LST than cases in which physicians made the final decision. In our centre, the primary role of ethics consultants in decision-making for unrepresented patients is to identify appropriate decision-making standards. In the absence of other data suggesting that ethics committees, as currently constituted, are ready to serve as substitute decision-makers for unrepresented patients, caution is necessary before designating these committees as default decision-makers. (shrink)

The twenty‐six‐year‐old patient requested a prophylactic bilateral mastectomy with reconstruction because of an extensive family history of cancer. She reported that she had developed melanoma at twenty‐five; that her mother, sister, aunts, and a cousin all had breast cancer; that a cousin had ovarian cancer at nineteen; and that a brother was treated for esophageal cancer at fifteen. The treating team was skeptical about this history, and they could find no documentation of the patient's reported melanoma. The surgeon (...) wrote the patient's primary care physician, explaining that he had seen the patient and planned to proceed with the bilateral mastectomy and reconstruction. The primary care physician responded that he was unable to substantiate several of the patient's claims; some of his colleagues believed the family history to be fabricated. Trying to make sense of the discrepancies, the genetic counselor called a counselor colleague who had met with this patient. The colleague suggested that the in‐house genetic counselor “google” the patient. The search revealed two Facebook pages linked to the patient. In one, apparently a personal profile, the patient stated that in addition to battling stage four melanoma, she had recently been diagnosed with breast cancer. She provided a link to a site where she solicited donations to attend a summit for young cancer patients. The other Facebook page featured numerous pictures of her with a bald head, as though she has been through chemotherapy. The genetic counselor showed the Facebook pages to the surgeon, who then decided not to operate. Should health care professionals “google” their patients? (shrink)

Metaphors may present some challenges in cases of self-illness ambiguity, yet they remain necessary to access a person’s perspective on illness and her relationship with it. The paper outlines the main functions of metaphors (i.e., naming, framing, changing functions) to explain why they can be valuable tools for reducing self-illness ambiguity. First, metaphor is presented as a creative way for a patient to (re)claim her ‘self’ through her own speaker’s meaning. Metaphor is not merely a way to name internal (...) processes and make them more communicable to others (compactness and inexpressibility theses), but primarily a way to represent what the mental illness means for herself (for-me-ness thesis). Second, particularly when extended in mental health narratives, metaphor can frame a person’s experiences of illness by offering a specific affective perspective for self-understanding (perspectivalness thesis). Third, the changing function of metaphor offers a new perspective on the experience of self-illness ambiguity in the narrative, allowing to look at the relationship with the illness, without fully identifying with it. The metaphorical functions can facilitate the discovery of new forms of affective coherence in a person’s mental health narrative and serve as crucial tools for clinicians’ understanding in the therapeutic process. (shrink)