Currently, the common theoretical models of "preferred" decision-making relationships do not correspond well with clinical experience. This interview study of congestive heart failure (CHF) patients documents the variety of patient preferences for decision-making, and the necessity for attention to family involvement. In addition, these findings illustrate the confusion as to the designation of surrogate decision-makers and physicians in charge. We conclude that no single model of physician-patient decision-making should be preferred, and that physicians should first ask patients how (...) they want medical information and decision-making to be handled. (shrink)

Con la investigación se constató que la adecuada relación médico-paciente depende en gran medida de la calidad del proceso diagnóstico. La Imagenología como especialidad médica en el marco de la Revolución Científico Técnica ilustra el complejo escenario en que se desenvuelve la relación médico-paciente al evidenciar nuevas expectativas, posibilidades y contradicciones. El trabajo tiene como objetivos destacar los rasgos distintivos de la relación médico-paciente en el ámbito de la Imagenología; contribuir a la formación ética de estos profesionales y significar la (...) responsabilidad social acorde con los principios más humanitarios en la atención de salud. (shrink)

As an introduction to this issue, I argue that the concept of autonomy is clearly important for many of the freedoms we enjoy. The problem in medicine with its use lies in interpreting the concept with respect to the impact of disease on persons, the models of medicine we employ, and the settings in which the problems arise. A short statement about the major points of the authors collected in this issue concludes the editorial.

Illness has a way of disorientating us, as if we are cast adrift in a foreign land. Like strangers in a dessert we seek oasis to recollect ourselves, find refuge and learn to build our own shelters. Using the philosophy of Levinas and Derrida, we can interpret health care providers (HCP), and the sites from which they act (e.g. hospitals), as _dwelling hosts_ that offer hospitality to strangers in this foreign land. While often the dwellings are physical (e.g. hospitals), this (...) is not always the case. Language represents a mobile home of refuge to the sick. Using language the HCP has built a shelter so as to dwell in the land of illness. However, while hospitality is an inviting concept, it also implies hostility. The door that opens may also be slammed shut. This article explores the paradox of the linguistic mobile home offered to patients. It highlights the power of language to construct a safe place in a strange land, but also explores the inherent violence. It ends with an exploration of the ways language can be used by HCP to assist patients to construct their own mobile shelters. (shrink)

Practically every development in medicine in the post–World War II period distanced the physician and the hospital from the patient and the community, disrupting personal connections and severing bonds of trust. We need an ethics that include bodily mediated knowledge as a complement to intellectual knowledge. Care is a challenging concept to explore, in part because it is employed widely and often without thoughtful parsing. Moreover, it has gained increasing significance in ethical discourse.1 Since the 1980s, feminist theorists have (...) used the term care ethics to describe a relational approach to morality that does not rely on rubrics of adjudication such as rules or consequences. The.. (shrink)

Book reviewed in this article: Taking Care of Strangers: The Rule of Law in Doctor‐Patient Relations. By Robert A. Burt.

This paper emanates from the concept of empathy as understood by the German philosopher Edith Stein. It begins by highlighting different interpretations of empathy. According to the German philosopher Martin Buber, empathy cannot be achieved as an act of will. In contrast, the psychologist Carl Rogers believes that empathy is identical with dialogue and is the outcome of a cognitive act of active listening. The empathy concept of Edith Stein, philosopher and follower of Edmund Husserl's phenomenology, goes beyond these conflicting (...) views and offers a more complex interpretation, with relevance for both healthcare and nursing education. When studying Stein's three‐level model of empathy, a field of tension between perspectives of closeness and distance becomes apparent. The paper concludes by suggesting Stein's model of empathy as a strategy to overcome the tension and meet the demands of empathy. (shrink)

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

Posttraumatic growth has been correlated with coping style among patients with breast cancer. However, to date, there is no consensus on the extent to which coping style is associated with PTG in patients with breast cancer. Therefore, we performed a meta-analysis to quantitatively synthesize previous findings. Based on the PRISMA method, this study employed a random effects model using the Stata software to calculate the pooled correlation coefficient and examined a range of moderators: cancer stage, publication type, participants’ age, and (...) coping style measurement tools. Relevant studies, published from inception to 9 March 2022, were identified through a systematic search in PubMed, Embase, Web of Science, PsycINFO, WANFANG DATA, Chinese National Knowledge Infrastructure, and China Science and Technology Journal Database databases. Finally, 20 studies involving 3,571 breast cancer patients were included in this investigation. The results showed a high positive relation between confrontation coping and PTG and a moderate positive relation between avoidance coping and PTG. Additionally, a moderate negative relation was identified between acceptance–resignation coping and PTG. Publication type and coping style measurement tools moderated the relation between coping style and PTG among breast cancer patients. The findings indicated that breast cancer patients should either confront the disease or avoid coping with it according to their disease state, which would facilitate better growth. More studies, especially, large prospective studies, are warranted to verify our findings.Systematic review registration[https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42022319107], identifier [CRD42022319107]. (shrink)

Loneliness in medicine is a serious problem not just for patients, for whom illness is intrinsically isolating, but also for physicians in the contemporary condition of medicine. We explore this problem by investigating the ideal physician-patient relationship, whose analogy with friendship has held enduring normative appeal. Drawing from Talbot Brewer and Nir Ben-Moshe, we argue that this appeal lies in a dynamic form of companionship incompatible with static models of friendship-like physician-patient relationships: a mutual refinement of embodied virtue (...) that draws both persons together. The ideal physician-patient relationship has a dialectical character that fosters each member's improvement of phenomenologically recognizing and embodying moral virtues. A key component of this dynamic is a commitment to the common goal of the patient's health, realized through joint interactivities and conversations over time. The physician's presence to the patient's suffering—understood best as an alienating phenomenological condition for the patient—orients and discloses possibilities for virtuous caregiving by structuring the meanings of the goals, conversations, and joint narrative constitutive of their relationship. Presence to suffering, paradoxically, is perhaps an important prerequisite for this dynamic partnership. These activities dialectically build an interpretive horizon of understanding through which moral goods and character refinement—in and for the other—may become revealed for both persons in their shared being-in-the-world. This analysis of suffering, mood, and revealing of (possible) moral goods has implications for addressing the modern problem of loneliness for patients and physicians, who are increasingly inhibited from building flourishing relationships with each other. (shrink)

Despite extensive theoretical debate, concrete efforts to overcome paternalism and unbalanced power relations between patients and doctors have produced limited results. In this article, I examine...

Despite enthusiasm for patient-centered care, the practice of patient-centered care is proving challenging. Further, it is curious that the literature about this subject does not explicitly address patient autonomy, since patients guide care in patient-centered care, and respect for patient autonomy is a prominent health-care value. We argue that by explicitly adopting a relational conception of autonomy as an essential component, patient-centered care becomes more coherent, is strengthened, and could help practitioners to make better (...) use of a principle of respect for autonomy. Hence, its use appears promising to narrow the theory–practice gap. (shrink)

Background: Over the last decade, new healthcare policies are transforming healthcare practices towards independent living and self-care of older people and people with a chronic disease or disability within the community. For professional caregivers in home care, such as nurses, this requires a shift from a caring attitude towards the promotion of patient autonomy. Aim: To explore how nurses in home care deal with the transformation towards fostering patient autonomy and self-care. Research design and context: A case study (...) was conducted in a professional development course for home care nurses, including participant observations and focus groups. The theoretical notion of ‘relational agency’ and the moral concept of ‘practices of responsibility’ were used to conduct a narrative analysis on the nurses’ stories about autonomy. Participants: Eight nurses, two coaches and two university lecturers who participated in the learning circle. Ethical considerations: Informed consent was sought at the start of the course and again, at specific moments during the course of the learning circle. Findings: Three main themes were found that expressed the moral demands experienced and negotiated by the nurses: adapting to the person, activating patients’ strengths and collaboration with patients and informal caregivers. Discussion: On a policy and organisational level, the moral discourse on patient autonomy gets intertwined with the instrumental discourse on healthcare budget savings. This is manifested in the ambiguities the nurses face in fostering patient autonomy in their daily home care practice. To support nurses, critical thinking, moral sensitivity and trans-professional working should be part of their professional development. Conclusion: The turn towards autonomy in healthcare raises moral questions about responsibilities for care. Promoting patient autonomy should be a collaborative endeavour and deliberation of patients, professional and informal caregivers together. (shrink)

The author of the article helps to understand the patient-doctor relation in the light of axiological psychiatry developed by the Polish psychiatrist, Antoni Kępiński (1918–1972). Kępiński was a doctor who, with great dedication and reverence, fulfilled his duties towards patients. First of all, he paid special attention to the uniqueness and specificity of the level of contact between a doctor and a patient and pointed out its friendly character. The article also introduces the sources of the axiological (...) psychiatry developed by Kępiński, which can be found in the philosophy of dialogue. In the light of the Cracow psychiatrist’s work, one can notice that his philosophical anthropology was saturated with the influence of dialogue thought. According to Kępiński, only a specific kind of emotional relationship based on empathy and trust can be the key to complete knowledge of a man fighting with mental illnesses. (shrink)

For successful goal-directed behavior, a performance monitoring system is essential. It detects behavioral errors and initiates behavioral adaptations to improve performance. Two electrophysiological potentials are known to follow errors in reaction time tasks: the error-related negativity, which is linked to error processing, and the error positivity, which is associated with subjective error awareness. Furthermore, the correct-related negativity is linked to uncertainty about the response outcome. Here we attempted to identify the involvement of the nucleus accumbens in the aforementioned performance monitoring (...) processes. To this end, we simultaneously recorded cortical activity and local field potentials during a flanker task performed by four patients with severe opioid abuse disorder who underwent electrode implantation in the NAc for deep brain stimulation. We observed significant accuracy-related modulations in the LFPs at the time of the ERN/CRN in two patients and at the time of Pe in three patients. These modulations correlated with the ERN in 2/8, with CRN in 5/8 and with Pe in 6/8, recorded channels, respectively. Our results demonstrate the functional interrelation of striatal and cortical processes in performance monitoring specifically related to error processing and subjective error awareness. (shrink)

Engagement with the historical and theoretical underpinnings of measuring quality of life (QoL) and patient‐reported outcomes (PROs) in healthcare is important. Ideas and values that shape such practices—and in the endgame, people's lives—might otherwise remain unexamined, be taken for granted or even essentialized. Our aim is to explicate and theoretically discuss the philosophical tenets underlying the practices of QoL assessment and PRO measurement in relation to the notion of person‐centredness. First, we engage with the late‐modern history of the (...) concept of QoL and the act of assessing and measuring it. Working with the historical method of genealogy, we describe the development of both QoL assessments and PRO measures (PROMs) within healthcare by accounting for the contextual conditions for their possibility. In this way, the historical and philosophical underpinnings of these measurement practices are highlighted. We move on to analyse theoretical and philosophical underpinnings regarding the use of PROMs and QoL assessments in clinical practice, as demonstrated in review studies thereof. Finally, we offer a critical analysis regarding the state of theory in the literature and conclude that, although improved person‐centredness is an implied driver of QoL assessments and PROMs in clinical practice, enhanced theoretical underpinning of the development of QoL assessments is called for. (shrink)

New brain-computer interface and neuroimaging techniques are making differentiation less ambiguous and more accurate between unresponsive wakefulness syndrome patients and patients with higher cognitive function and awareness. As research into these areas continues to progress, new ethical issues will face physicians of patients suffering from total locked-in syndrome, characterized by complete loss of voluntary muscle control, with retention of cognitive function and awareness detectable only with neuroimaging and brain-computer interfaces. Physicians, researchers, ethicists and hospital ethics committees should be aware of (...) and prepared to handle ethical issues unique to these totally locked-in patients. Several thought experiments are discussed, to highlight potential ethical dilemmas surrounding surrogate decision-making, autonomy, end-of-life care, and pediatric care, which will be unique to total LIS patients. These, along with other ethical problems especially relevant to total LIS patients, merit further discussion among physicians, researchers, ethicists and hospital ethics committees, to facilitate consensus regarding these issues, and improve patient care. (shrink)

Impaired performance in verbal fluency tasks is a frequent observation in Parkinson’s disease. As to the nature of the underlying cognitive deficit, it is commonly attributed to a frontal-type dysexecutive syndrome due to nigrostriatal dopamine depletion. Whereas dopaminergic medication typically improves VF performance in PD, e.g., by ameliorating impaired lexical switching, its effect on semantic network activation is unclear. Data from priming studies suggest that dopamine causes a faster decay of semantic activation spread. The aim of the current study was (...) to examine the impact of dopaminergic medication on the dynamic change of word frequency during VF performance as a measure of semantic spreading activation. To this end, we performed a median split analysis of word frequency during phonemic and semantic VF task performance in a PD group tested while receiving dopaminergic medication as well as after drug withdrawal, and in a sample of age-matched healthy volunteers. Dopaminergic medication in the PD group significantly affected phonemic VF with improved word production as well as increased error-rates. The expected decrease of word frequency during VF task performance was significantly smaller in the PD group ON medication than in healthy volunteers across semantic and phonemic VF. No significant group-difference emerged between controls and the PD group in the OFF condition. The comparison between both treatment conditions within the PD group did not reach statistical significance. The observed pattern of results indicates a faster decay of semantic network activation during lexical access in PD patients on dopaminergic medication. In view of improved word generation, this finding is consistent with a concept of more focused neural activity by an increased signal-to-noise ratio due to dopaminergic neuromodulation. However, the effect of dopaminergic stimulation on VF output suggests a trade-off between these beneficial effects and increased error-rates. (shrink)

Disturbed identity is one of the defining characteristics of Borderline Personality Disorder manifested in a broad spectrum of dysfunctions related to the self, including disturbances in meaning-generating self-narratives. Autobiographical memories are memories of personal events that provide crucial building-blocks in our construction of a life-story, self-concept, and a meaning-generating narrative identity. The cultural life script represents culturally shared expectations as to the order and timing of life events in a prototypical life course within a given culture. It is used to (...) organize one’s autobiographical memories. Here, 17 BPD-patients, 14 OCD-patients, and 23 non-clinical controls generated three important autobiographical memories and their conceptions of the cultural life script. BPD-patients reported substantially more negative memories, fewer of their memories were of prototypical life script events, their memory narratives were less coherent and more disoriented, and the overall typicality of their life scripts was lower as compared with the other two groups. (shrink)

The Roman Catholic theological approach to euthanasia is radically prohibitive. The main theological argument for this prohibition is the so-called “stewardship argument”: Christians cannot escape accounting to God for stewardship of the bodies given them on earth. This contribution presents an alternative approach based on European existentialist and philosophical traditions. The suggestion is that exploring the fullness of our relational responsibility is more apt for a pluralist – and even secular – debate on the legitimacy of euthanasia.

This study investigated the effect of obstructive sleep apnea on the neural mechanism of visual perception. A preliminary case-control study was conducted. Seventeen patients with moderate to severe OSA in the sleep center of Civil Aviation General Hospital and 20 healthy controls matched for age, sex, and education were recruited. The participants accepted the perceptual contour integration task, compared the differences in behavioral indicators between the two groups, and compared the differences in electroencephalography data between the two groups through event-related (...) potential technology. The groups did not differ significantly in age and gender, but they differed significantly in body mass index. The groups were not statistically different in terms of sleep structure and total sleep time. AHI, sleep efficiency, and minimal SaO2 value in the OSA group were significantly different from those of the control group. The results showed that the average reaction time of the OSA group was significantly longer than that of the healthy control group in the contour integration task. There was no significant difference in the accuracy rate. The results of EEG showed that the amplitudes of N100 of the OSA group were significantly higher than those of the control group at O1, Oz, and O2 electrodes. There was no significant difference in latency between the two groups. At the FCz electrode, the amplitudes of N200 of the OSA group were significantly higher than those of the control group. Therefore, we concluded that in the early stage of the perceptual integration task, although the neural response activity of patients with moderate and severe OSA was not accelerated, they need to call on more psychological resources, activate more neurons in the contour global recognition processing stage, and the compensatory effect of frontal lobe appeared in the stage of visual perception. (shrink)

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

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

Patient engagement in healthcare is increasingly discussed in the literature, and initiatives engaging patients in quality improvement activities, organizational design, governance, and research are becoming more and more common and have even become mandatory for certain health institutions. Here we discuss a number of ethical challenges raised by this engagement from patients from the perspectives of research, organizational/quality improvement practices, and patient experiences, while offering preliminary recommendations as to how to address them. We identified three broad categories of (...) ethical issues that intersect between the different types of patient engagement: (1) establishing a shared vision about goals of patient engagement and respective roles; (2) the process and method of engaging with patients; and (3) practical aspects of patient engagement. To explain these issues, we build from our personal, professional, and academic experiences, as well as traditions such as pragmatism and hermeneutics that stress the importance of participation, empowerment, and engagement. Patient engagement can be highly valuable at numerous levels, but particular attention should be paid to the process of engaging with patients and related ethical issues. Some lessons from the literature on the ethics of participatory research can be translated to organizational and quality improvement practices. (shrink)

We join McCarthy and Howard (2023) in advocating supported decision-making for patients with diminished mental capacity that meaningfully expands the role of trustees beyond merely channeling the i...

The purpose of this study is to investigate the current state of post-traumatic growth and identify its influencing factors in discharged COVID-19 patients. PTG refers to individual experiences of significant positive change arising from the struggle with a major life crisis. This descriptive cross-sectional study used the convenient sampling method to recruit 140 discharged COVID-19 patients in Hunan, China. The results show that the PTG of the discharged COVID-19 patients was positively correlated with self-esteem, post-traumatic stress disorder, coping style tendency, (...) and social support, but negatively correlated with the time from onset to diagnosis. Our findings could provide guidance on improving the psychological state and well-being of discharged COVID-19 patients. (shrink)

Background: The number of cancer patients is constantly growing. Both WHO and IARC report that this number may reach up to 24 million new diagnosed cases in the next two decades. The proposed treatment and especially the diagnosis can have a significant impact on an individual's approach to the disease, as well as on the patient's quality of life.Objectives: The study aimed to assess the quality of life, feelings, and fear of cancer-treating oncological patients, before and during the COVID-19 (...) pandemic.Material and Methods: The study used the standardized WHOQOL quality of life questionnaire in a shortened version, the COVID-19 fear scale, and the AIS disease acceptance scale. The questionnaire survey was conducted among patients of cancer clinics. The study was conducted in two stages–before the COVID-19 pandemic and during the COVID-19 pandemic. Data from 450 correctly completed questionnaires were analyzed statistically. The obtained data were statistically processed using the Kruskal-Wallis and Mann-Whitney U test.Results: Among the surveyed patients of the cancer clinic, the quality of life during the COVID-19 pandemic decreased by 2%, compared to the period before the pandemic. The frequency of negative feelings associated with cancer increased during the COVID-19 pandemic–by 11% more men, and 4.4% of women determined the frequency of negative feelings to be 2–3 times a week. The level of fear associated with COVID-19 was moderate, with women having a higher level of fear.Conclusion: The development of the epidemic is very important in terms of public health. COVID-19 should be considered as one of the factors that bring about sudden changes in the mental health of the population, which may result from the dynamic development of this disease, dramatic media coverage, and own experiences. It has been shown that the sudden appearance of such a large stressor causes a decrease in patients' quality of life and an increase in negative feelings associated with chronic disease. (shrink)

Patients with advanced dementia suffer from severe cognitive and functional impairment, including eating disorders. The focus of our research is on the issue of life-sustaining treatment, specifically on the social and ethical implications of tube feeding. The treatment decision, based on values of life and dignity, involves sustaining lives that many people consider not worth living. We explore the moral approach to caring for these patients and review the history of the debate on artificial nutrition and hydration showing the impact (...) of the varying perceptions of the value of these patients' lives on changing norms. We argue that in light of the value of solidarity, decisions about life-sustaining treatment for patients with advanced dementia should be made on a case by case basis, as with any other patient, in consideration of the medical implications of the intervention which might best serve the goals of care for the individual patient. (shrink)

It is commonplace that care should be patient-centered. Nevertheless, no universally agreed-upon definition of patient-centered care exists. By consequence, the relation between patient-centered care as such and ethical principles cannot be investigated. However, some research has been performed on the relation between specific models of patient-centered care and ethical principles such as respect for autonomy and beneficence. In this article, I offer a detailed case study on the relationship between specific measures of patient-centered (...) care and the ethical principle of respect for autonomy. Decision Quality Instruments (DQIs) are patient-centered care measures that were developed by Karen Sepucha and colleagues. The model of patient-centered care that guided the development of these DQIs pays special attention to the ethical principle of respect for autonomy. Using Jonathan Pugh’s theory of rational autonomy, I will investigate how the DQIs relate to patient autonomy. After outlining Pugh’s theory of rational autonomy and framing the DQIs accordingly (Part I), I will investigate whether the methodological choices made while developing these DQIs align with respect for autonomy (Part II). My analysis will indicate several tensions between DQIs and patient autonomy that could result in what I call “structural paternalism.” These tensions offer us sufficient reasons, especially given the importance of the ethical principle of respect for autonomy, to initiate a more encompassing debate on the normative validity of Decision Quality Instruments. The aim of the present paper is to highlight the need for, and to offer a roadmap to, this debate. (shrink)

Substantial efforts have recently been made to reform the physician-patient relationship, particularly toward replacing the `silent world of doctor and patient' with informed patient participation in medical decision-making. This 'new ethos of patient autonomy' has especially insisted on the routine provision of informed consent for all medical interventions. Stronly supported by most bioethicists and the law, as well as more popular writings and expectations, it still seems clear that informed consent has, at best, been received in (...) a lukewarm fashion by most clinicians, many simply rejecting what they commonly refer to as the `myth of informed consent'. The purpose of this book is to defuse this seemingly intractable controversy by offering an efficient and effective operational model of informed consent. This goal is pursued first by reviewing and evaluating, in detail, the agendas, arguments, and supporting materials of its proponents and detractors. A comprehensive review of empirical studies of informed consent is provided, as well as a detailed reflection on the common clinician experience with attempts at informed consent and the exercise of autonomy by patients. In the end, informed consent is recast as a management tool for pursuing clinically and ethically important goods and values that any clinician should see as meriting pursuit. Concurrently, the model incorporates a flexible, anticipatory approach that recognizes that no static, generic ritual can legitimately pursue the quite variable goods and values that may be at stake with different patients in different situations. Finally, efficiency of provision is addressed by not pursuing the unattainable and ancillary. Throughout, the traditional principle of beneficence is appealed to toward articulating an operational model of informed consent as an intervention that is likely to change outcomes at the bedside for the better. (shrink)

As in other areas of medical practice, relatives accompany patients to genetic consultations. However, unlike in other areas, the consultations may be relevant to the relatives’ health because they may be at risk of developing the same genetic condition as the patient. The presence of relatives in genetic consultation may affect the decision‐making process and it raises questions about the perception of patient autonomy and the way it is practiced in genetics. However, these issues have not been examined (...) in previous empirical studies. This article aims to fill this gap by reporting findings from a qualitative study with clinicians working in the area of inherited breast cancer. The findings indicate that family presence has an impact on the patient's decisions to undergo genetic testing and preventative operations when she is diagnosed as a carrier. The findings further indicate that, unlike in other areas of medical practice, blood relatives who are present in consultations are perceived by clinicians as patients or potential patients, and this in turn increases their involvement in discussions in the consultation room. Finally, the findings indicate that in genetics, a relational approach to autonomy is applied. Decisions are made in a social context, where the relatives’ views are heard and taken into account. The findings suggest that the conventional bioethical approach to autonomy, which perceives the decision‐making unit as comprising a clinician and an individual patient, is challenged in genetics. The findings thus suggest that bioethicists, lawyers and policy‐makers should consider whether this individualistic approach is still valid and applicable. (shrink)

It is generally accepted that morally justified healthcare rationing must be non-discriminatory and cost-effective. However, given conventional concepts of cost-effectiveness, resources spent on disabled people are spent less cost-effectively, ceteris paribus, than resources spent on non-disabled people. Thus, it is reasonable to assume that standard cost-effectiveness discriminates against the disabled. Call this thedisability discrimination problem.Part of the disability discrimination involved in cost-effectiveness stems from the way in which health-related quality of life is accounted for and measured. This paper offers and (...) defends a patient-sensitive account of health-related quality of life, which can effectively make cost-effectiveness less discriminatory against the disabled and thus more morally justified. (shrink)

Medical billing has become so intertwined with patient care, that in order to be truly committed to the physician's telos of managing a patient's medical suffering, it is imperative that physician ought to reexamine many of the ethical considerations about billing.

ObjectiveWhen regaining consciousness, patients who emerge from a minimally conscious state (EMCS) present with different levels of functional disability, which pose great challenges for treatment. This study investigated the frontoparietal activity in EMCS patients and its effects on functional disability.Materials and methodsIn this preliminary study, 12 EMCS patients and 12 healthy controls were recruited. We recorded a resting-state scalp electroencephalogram (EEG) for at least 5 min for each participant. Each patient was assessed using the disability rating scale (DRS) to (...) determine the level of functional disability. We analyzed the EEG power spectral density and sensor-level functional connectivity in relation to the patient’s functional disability.ResultsIn the frontoparietal region, EMCS patients demonstrated lower relative beta power (P < 0.01) and higher weighted phase lag index (wPLI) values in the theta (P < 0.01) and gamma (P < 0.01) bands than healthy controls. The frontoparietal theta wPLI values of EMCS patients were positively correlated with the DRS scores (rs = 0.629, P = 0.029). At the whole-brain level, EMCS patients only had higher wPLI values in the theta band (P < 0.01) than healthy controls. The whole-brain theta wPLI values of EMCS patients were also positively correlated with the DRS scores (rs = 0.650, P = 0.022). No significant difference in the power and connectivity between the frontoparietal region and the whole brain in EMCS patients was observed.ConclusionEMCS patients still experience neural dysfunction, especially in the frontoparietal region. However, the theta connectivity in the frontoparietal region did not increase specifically. At the level of the whole brain, the same shift could also be seen. Theta functional connectivity in the whole brain may underlie different levels of functional disability. (shrink)

Disorders of consciousness (DOC) are a family of related neurological syndromes characterized by deficits of varying degrees of wakefulness (e.g., sleep–wake cycles and arousal) or awareness (e.g., reacting to stimuli, interacting with the environment). Although coma rarely persists for more than a few weeks, some patients remain in a subsequent vegetative state or a minimally conscious state for months or years. Caring for patients with DOC raises ethical questions, but the perspectives of healthcare providers on these questions remain poorly documented. (...) We conducted a qualitative study involving healthcare providers with different backgrounds. Semistructured interviews were used to explore attitudes toward ethical issues. We found that contextual (e.g., time, resource allocation) and relational aspects (e.g., communication process, families) shaped how ethical challenges surfaced and were managed. We call for greater awareness of contextual, institutional and social aspects and focus on these issues in training programs. (shrink)

BackgroundPrecision medicine development is driven by the possibilities of next generation sequencing, information technology and artificial intelligence and thus, raises a number of ethical questions. Empirical studies have investigated such issues from the perspectives of health care professionals, researchers and patients. We synthesize the results from these studies in this review.MethodsWe used a systematic strategy to search, screen and assess the literature for eligibility related to our research question. The initial search for empirical studies in five data bases provided 665 (...) different records and we selected 92 of these publications for inclusion in this review. Data were extracted in a spreadsheet and categorized into different topics representing the views on ethical issues in precision medicine.ResultsMany patients and professionals expect high benefits from precision medicine and have a positive attitude towards it. However, patients and professionals also perceive some risks. Commonly perceived risks include: lack of evidence for accuracy of tests and efficacy of treatments; limited knowledge of patients, which makes informed consent more difficult; possible unavailability of access to precision medicine for underprivileged people and ethnic minorities; misuse of data by insurance companies and employers, potential of racial stigmatization due to genetic information; unwanted communication of incidental findings; changes in doctor-patient-relationship through focusing on data; and the problem that patients could feel under pressure to optimize their health.ConclusionsNational legislation and guidelines already minimize many risks associated with precision medicine. However, from our perspective some problems require more attention. Should hopes for precision medicine’s benefits be fulfilled, then the ethical principle of justice would require an unlimited access to precision medicine for all people. The potential for autonomous patients’ decisions must be greatly enhanced by improvements in patient education. Harm from test results must be avoided in any case by the highest possible data security level and communication guidelines. Changes in the doctor-patient relationship and the impact of precision medicine on the quality of life should be further investigated. Additionally, the cost-effectiveness of precision medicine should be further examined, in order to avoid malinvestment. (shrink)