Subjects -> OCCUPATIONS AND CAREERS (Total: 33 journals)
Showing 1 - 23 of 23 Journals sorted alphabetically
Advances in Developing Human Resources     Hybrid Journal   (Followers: 26)
American Journal of Pastoral Counseling     Hybrid Journal  
BMC Palliative Care     Open Access   (Followers: 33)
British Journal of Guidance & Counselling     Hybrid Journal   (Followers: 14)
Career Development and Transition for Exceptional Individuals     Hybrid Journal   (Followers: 9)
Career Development International     Hybrid Journal   (Followers: 18)
Career Development Quarterly     Hybrid Journal   (Followers: 5)
Community Development     Hybrid Journal   (Followers: 21)
Education + Training     Hybrid Journal   (Followers: 23)
Equality, Diversity and Inclusion : An International Journal     Hybrid Journal   (Followers: 20)
Field Actions Science Reports     Open Access  
Formation emploi     Open Access  
Health Care Analysis     Hybrid Journal   (Followers: 13)
Human Resource Development Review     Hybrid Journal   (Followers: 27)
Industrial and Organizational Psychology     Hybrid Journal   (Followers: 25)
International Journal for Educational and Vocational Guidance     Hybrid Journal   (Followers: 7)
International Journal for Quality in Health Care     Hybrid Journal   (Followers: 40)
International Journal of Health Care Quality Assurance     Hybrid Journal   (Followers: 14)
International Journal of Work Innovation     Hybrid Journal   (Followers: 2)
Journal of Career Assessment     Hybrid Journal   (Followers: 6)
Journal of Career Development     Hybrid Journal   (Followers: 10)
Journal of Human Capital     Full-text available via subscription   (Followers: 11)
Journal of Human Development and Capabilities : A Multi-Disciplinary Journal for People-Centered Development     Hybrid Journal   (Followers: 22)
Journal of Multicultural Counseling and Development     Hybrid Journal   (Followers: 7)
Journal of Psychological Issues in Organizational Culture     Hybrid Journal   (Followers: 8)
Journal of Vocational Behavior     Hybrid Journal   (Followers: 28)
Neurocritical Care     Hybrid Journal   (Followers: 17)
Palliative & Supportive Care     Hybrid Journal   (Followers: 33)
Performance Improvement Quarterly     Hybrid Journal   (Followers: 4)
Recherches & éducations     Open Access  
Rehabilitation Counseling Bulletin     Hybrid Journal   (Followers: 3)
Research on Economic Inequality     Hybrid Journal   (Followers: 9)
Vocations and Learning     Hybrid Journal   (Followers: 7)
Work and Occupations     Hybrid Journal   (Followers: 57)
Work, Employment & Society     Hybrid Journal   (Followers: 51)
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Health Care Analysis
Journal Prestige (SJR): 0.445
Citation Impact (citeScore): 1
Number of Followers: 13  
 
  Hybrid Journal Hybrid journal (It can contain Open Access articles)
ISSN (Print) 1573-3394 - ISSN (Online) 1065-3058
Published by Springer-Verlag Homepage  [2469 journals]
  • Doctors as Resource Stewards' Translating High-Value, Cost-Conscious
           Care to the Consulting Room

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      Abstract: Abstract After many policy attempts to tackle the persistent rise in the costs of health care, physicians are increasingly seen as potentially effective resource stewards. Frameworks including the quadruple aim, value-based health care and choosing wisely underline the importance of positive engagement of the health care workforce in reinventing the system–paving the way to real affordability by defining the right care. Current programmes focus on educating future doctors to provide ‘high-value, cost-conscious care’ (HVCCC), which proponents believe is the future of sustainable medical practice. Such programmes, which aim to extend population-level allocation concerns to interactions between an individual doctor and patient, have generated lively debates about the ethics of expanding doctors’ professional accountability. To empirically ground this discussion, we conducted a qualitative interview study to examine what happens when resource stewardship responsibilities are extended to the consulting room. Attempts to deliver HVCCC were found to involve inevitable trade-offs between benefits to the individual patient and (social) costs, medical uncertainty and efficiency, and between resource stewardship and trust. Physicians reconcile this by justifying good-value care in terms of what is in the best interest of individual patients–redefining the currency of value from monetary costs to a patient’s quality of life, and cost-conscious care as reflective medical practice. Micro-level resource stewardship thus becomes a matter of working reflexively and reducing wasteful forms of care, rather than of making difficult choices about resource allocation.
      PubDate: 2022-05-13
       
  • Practitioner Bias as an Explanation for Low Rates of Palliative Care Among
           Patients with Advanced Dementia

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      Abstract: Abstract Patients with advanced dementia are less likely than those with other terminal illnesses to receive palliative care. Due to the nature and course of dementia, there may be a failure to recognize the terminal stage of the disease. A possible and under-investigated explanation for this healthcare disparity is the healthcare practitioner who plays a primary role in end-of-life decision-making. Two potential areas that might impact provider decision-making are cognitive biases and moral considerations. In this analysis, we demonstrate how the cognitive biases and moral considerations of practitioners related to clinical decision-making are inherent in clinical practice and may impact on providers’ accuracy related to diagnostic and treatment related decision-making associated with patients with advanced dementia. Anchoring, default, availability, representativeness and framing biases are cognitive biases based on the "Two System Model" that relate to decision-making in end-of-life care. In patients with advanced dementia, those biases may result in a tendency to adhere to traditional mandatory care, involving an aggressive approach to care, which values saving lives at all costs, without taking into account the possible suffering and long-term consequences. Aspects such as moral sensitivity and moral courage play an important role in ethical decision-making related to advanced dementia. Investigations of clinical decision-making that include the cognitive biases and ethical considerations of practitioners might advance the comprehensive understanding of the clinical decision-making process related to care of patients with advanced dementia and promote the quality of care given to this population.
      PubDate: 2022-03-01
       
  • Ethico-Political Aspects of Conceptualizing Screening: The Case of
           Dementia

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      Abstract: Abstract While the value of early detection of dementia is largely agreed upon, population-based screening as a means of early detection is controversial. This controversial status means that such screening is not recommended in most national dementia plans. Some current practices, however, resemble screening but are labelled “case-finding” or “detection of cognitive impairment”. Labelled as such, they may avoid the ethical scrutiny that population-based screening may be subject to. This article examines conceptualizations of screening and case-finding. It shows how the definitions and delimitations of the concepts (the what of screening) are drawn into the ethical, political, and practical dimensions that screening assessment criteria or principles are intended to clarify and control (the how of screening, how it is and how it should be performed). As a result, different conceptualizations of screening provide the opportunity to rethink what ethical assessments should take place: the conceptualizations have different ethico-political implications. The article argues that population-based systematic screening, population-based opportunistic screening, and case-finding should be clearly distinguished.
      PubDate: 2021-12-01
      DOI: 10.1007/s10728-021-00431-3
       
  • Engaging Tomorrow’s Doctors in Clinical Ethics: Implications for
           Healthcare Organisations

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      Abstract: Abstract Clinical ethics can be viewed as a practical discipline that provides a structured approach to assist healthcare practitioners in identifying, analysing and resolving ethical issues that arise in practice. Clinical ethics can therefore promote ethically sound clinical and organisational practices and decision-making, thereby contributing to health organisation and system quality improvement. In order to develop students’ decision-making skills, as well as prepare them for practice, we decided to introduce a clinical ethics strand within an undergraduate medical curriculum. We designed a programme of clinical ethics activities for teaching and assessment purposes that involved using ethical frameworks to analyse hypothetical and real-life cases in uni- and inter- professional groups. In this paper, we draw on medical student feedback collected over 6 years to illustrate the appeal to students of learning clinical ethics. We also outline the range of benefits for students, healthcare organisations, and the field of clinical ethics arising from tomorrow’s doctors experiencing clinical ethics early in their training. We conclude by briefly reflecting on how including clinical ethics within tomorrow’s doctors curricular can secure and continue future engagement in clinical ethics support services in the UK, alongside the dangers of preparing students for organisational cultures that might not (yet) exist. We anticipate the findings presented in the paper will contribute to wider debates examining the impact of ethics teaching, and its ability to inform future doctors’ practice.
      PubDate: 2021-12-01
      DOI: 10.1007/s10728-020-00403-z
       
  • Beyond Individual Triage: Regional Allocation of Life-Saving Resources
           such as Ventilators in Public Health Emergencies

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      Abstract: Abstract In the first wave of the COVID-19 pandemic, healthcare workers in some countries were forced to make distressing triaging decisions about which individual patients should receive potentially life-saving treatment. Much of the ethical discussion prompted by the pandemic has concerned which moral principles should ground our response to these individual triage questions. In this paper we aim to broaden the scope of this discussion by considering the ethics of broader structural allocation decisions raised by the COVID-19 pandemic. More specifically, we consider how nations ought to distribute a scarce life-saving resource across healthcare regions in a public health emergency, particularly in view of regional differences in projected need and existing capacity. We call this the regional triage question. Using the case study of ventilators in the COVID-19 pandemic, we show how the moral frameworks that we might adopt in response to individual triage decisions do not translate straightforwardly to this regional-level triage question. Having outlined what we take to be a plausible egalitarian approach to the regional triage question, we go on to propose a novel way of operationalising the ‘save the most lives’ principle in this context. We claim that the latter principle ought to take some precedence in the regional triage question, but also note important limitations to the extent of the influence that it should have in regional allocation decisions.
      PubDate: 2021-12-01
      DOI: 10.1007/s10728-020-00427-5
       
  • Gender Transition: Is There a Right to Be Forgotten'

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      Abstract: Abstract The European Union (EU) faced high risks from personal data proliferation to individuals’ privacy. Legislation has emerged that seeks to articulate all interests at stake, balancing the need for data flow from EU countries with protecting personal data: the General Data Protection Regulation. One of the mechanisms established by this new law to strengthen the individual’s control over their data is the so-called “right to be forgotten”, the right to obtain from the controller the erasure of records. In gender transition, this right represents a powerful form of control over personal data, especially health data that may reveal a gender with which they do not identify and reject. Therefore, it is pertinent to discern whether the right to have personal data deleted—in particular, health data—is ethically acceptable in gender transition. Towards addressing the ethical dimensions of the right to be forgotten in this case, this study presents relevant concepts, briefly outlines history, ethics and law of records considering the evolution from paper to electronic format, the main aspects of identity construction and gender identity, and explores the relationship between privacy, data protection/information control and identity projection. Also, it discusses in gender transition the relation between “the right to self-determination”, “the right to delete”, and “the right to identity and individuality”. Conclusions on the ethical admissibility of the ‘right to be forgotten’ to control gender-affirming information are presented.
      PubDate: 2021-12-01
      DOI: 10.1007/s10728-021-00433-1
       
  • Maternal–Fetal Surgery: Does Recognising Fetal Patienthood Pose a Threat
           to Pregnant Women’s Autonomy'

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      Abstract: Abstract Maternal–fetal surgery (MFS) encompasses a range of innovative procedures aiming to treat fetal illnesses and anomalies during pregnancy. Their development and gradual introduction into healthcare raise important ethical issues concerning respect for pregnant women’s bodily integrity and autonomy. This paper asks what kind of ethical framework should be employed to best regulate the practice of MFS without eroding the hard-won rights of pregnant women. I examine some existing models conceptualising the relationship between a pregnant woman and the fetus to determine what kind of framework is the most adequate for MFS, and conclude that an ecosystem or maternal–fetal dyad model is best suited for upholding women’s autonomy. However, I suggest that an appropriate framework needs to incorporate some notion of fetal patienthood, albeit a very limited one, in order to be consistent with the views of healthcare providers and their pregnant patients. I argue that such an ethical framework is both theoretically sound and fundamentally respectful of women’s autonomy, and is thus best suited to protect women from coercion or undue paternalism when deciding whether to undergo MFS.
      PubDate: 2021-12-01
      DOI: 10.1007/s10728-021-00440-2
       
  • Pharmaceutical Sales Representatives in the United States and China: The
           Need for Professional Public Space

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      Abstract: Abstract Pharmaceutical sales representatives (PSRs) are one of the most frequently used drug information sources for physicians in both the United States and China. During face-to-face interactions, PSRs use various promotional strategies to impact the prescribing behavior. In the United States, PSRs provide physicians small gifts, free drug samples, and “sincere friendships”, whereas in China, they played an indispensable role in medical corruption over the past three decades. To cope with the undue influence of PSRs, both these countries have taken positive but insufficient measures to eliminate the effect thus far. By comparing the strategies of American and Chinese PSRs, it was found that building a friendly personal relationship with physicians in a relatively closed private environment (such as physician’s office) is a key factor to exert an individualized influence on physicians, even in different social backgrounds and healthcare contexts. Therefore, this essay suggests that it is necessary to limit the establishment of personal relationships and maintain a more professional interaction to reduce the personalized psychological and emotional influences on physicians’ professional judgment. To achieve this goal, it is proposed to transfer the physician-PSR interaction to a professional public space as a supplement to current countermeasures and suggestions. The presence of others and the possibility of third party participation will stimulate more ethical and reputational concerns. It is hoped that the increased transparency of the interaction will promote participants to consider more professional norms and mitigate the undue influence of PSRs’ individualized strategies.
      PubDate: 2021-11-11
      DOI: 10.1007/s10728-021-00438-w
       
  • Trust and The Acquisition and Use of Public Health Information

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      Abstract: Abstract Information is clearly vital to public health, but the acquisition and use of public health data elicit serious privacy concerns. One strategy for navigating this dilemma is to build 'trust' in institutions responsible for health information, thereby reducing privacy concerns and increasing willingness to contribute personal data. This strategy, as currently presented in public health literature, has serious shortcomings. But it can be augmented by appealing to the philosophical analysis of the concept of trust. Philosophers distinguish trust and trustworthiness from cognate attitudes, such as confident reliance. Central to this is value congruence: trust is grounded in the perception of shared values. So, the way to build trust in institutions responsible for health data is for those institutions to develop and display values shared by the public. We defend this approach from objections, such as that trust is an interpersonal attitude inappropriate to the way people relate to organisations. The paper then moves on to the practical application of our strategy. Trust and trustworthiness can reduce privacy concerns and increase willingness to share health data, notably, in the context of internal and external threats to data privacy. We end by appealing for the sort of empirical work our proposal requires.
      PubDate: 2021-11-09
      DOI: 10.1007/s10728-021-00436-y
       
  • Justice, Transparency and the Guiding Principles of the UK’s National
           Institute for Health and Care Excellence

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      Abstract: Abstract The National Institute for Health and Care Excellence (NICE) is the UK’s primary healthcare priority-setting body, responsible for advising the National Health Service in England on which technologies to fund and which to reject. Until recently, the normative approach underlying this advice was described in a 2008 document entitled ‘Social value judgements: Principles for the development of NICE guidance’ (SVJ). In January 2020, however, NICE replaced SVJ with a new articulation of its guiding principles. Given the significant evolution of NICE’s methods between 2008 and 2020, this study examines whether this new document (‘Principles’) offers a transparent account of NICE’s current normative approach. It finds that it does not, deriving much of its content directly from SVJ and failing to fully acknowledge or explain how and why NICE’s approach has since changed. In particular, Principles is found to offer a largely procedural account of NICE decision-making, despite evidence of the increasing reliance of NICE’s methods on substantive decision-rules and ‘modifiers’ that cannot be justified in purely procedural terms. Thus, while Principles tells NICE’s stakeholders much about how the organisation goes about the process of decision-making, it tells them little about the substantive grounds on which its decisions are now based. It is therefore argued that Principles does not offer a transparent account of NICE’s normative approach (either alone, or alongside other documents) and that, given NICE’s reliance on transparency as a requirement of procedural justice, NICE does not in this respect satisfy its own specification of a just decision-maker.
      PubDate: 2021-11-08
      DOI: 10.1007/s10728-021-00444-y
       
  • Three Harm-Based Arguments for a Moral Obligation to Vaccinate

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      Abstract: Abstract A particularly strong reason to vaccinate against transmittable diseases, based on considerations of harm, is to contribute to the realization of population-level herd immunity. We argue, however, that herd immunity alone is insufficient for deriving a strong harm-based moral obligation to vaccinate in all circumstances, since the obligation significantly weakens well above and well below the herd immunity threshold. The paper offers two additional harm-based arguments that, together with the herd immunity argument, consolidates our moral obligation. First, we argue that individuals should themselves aim not to expose others to risk of harm, and that this consideration becomes stronger the more non-vaccinated people there are, i.e., the further we are below herd immunity. Second, we elaborate on two pragmatic reasons to vaccinate beyond the realization of herd immunity, pertaining to instability of vaccination rates and population heterogeneity, and argue that vaccinating above the threshold should serve as a precautionary measure for buttressing herd immunity. We also show that considerations of harm have normative primacy in establishing this obligation over considerations of fairness. Although perfectly sound, considerations of fairness are, at worst secondary, or at best complementary to considerations of harm.
      PubDate: 2021-11-05
      DOI: 10.1007/s10728-021-00437-x
       
  • Should Digital Contact Tracing Technologies be used to Control
           COVID-19' Perspectives from an Australian Public Deliberation

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      Abstract: Abstract Mobile phone-based applications (apps) can promote faster targeted actions to control COVID-19. However, digital contact tracing systems raise concerns about data security, system effectiveness, and their potential to normalise privacy-invasive surveillance technologies. In the absence of mandates, public uptake depends on the acceptability and perceived legitimacy of using technologies that log interactions between individuals to build public health capacity. We report on six online deliberative workshops convened in New South Wales to consider the appropriateness of using the COVIDSafe app to enhance Australian contact tracing systems. All groups took the position (by majority) that the protections enacted in the app design and supporting legislation were appropriate. This support is contingent on several system attributes including: the voluntariness of the COVIDSafe app; that the system relies on proximity rather than location tracking; and, that data access is restricted to local public health practitioners undertaking contact tracing. Despite sustained scepticism in media coverage, there was an underlying willingness to trust Australian governing institutions such that in principle acceptance of the new contact tracing technology was easy to obtain. However, tensions between the need to prove system effectiveness through operational transparency and requirements for privacy protections could be limiting public uptake. Our study shows that informed citizens are willing to trade their privacy for common goods such as COVID-19 suppression. But low case numbers and cautionary public discourses can make trustworthiness difficult to establish because some will only do so when it can be demonstrated that the benefits justify the costs to individuals.
      PubDate: 2021-10-26
      DOI: 10.1007/s10728-021-00441-1
       
  • Ethical Guidance for Hard Decisions: A Critical Review of Early
           International COVID-19 ICU Triage Guidelines

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      Abstract: Abstract This article provides a critical comparative analysis of the substantive and procedural values and ethical concepts articulated in guidelines for allocating scarce resources in the COVID-19 pandemic. We identified 21 local and national guidelines written in English, Spanish, German and French; applicable to specific and identifiable jurisdictions; and providing guidance to clinicians for decision making when allocating critical care resources during the COVID-19 pandemic. US guidelines were not included, as these had recently been reviewed elsewhere. Information was extracted from each guideline on: 1) the development process; 2) the presence and nature of ethical, medical and social criteria for allocating critical care resources; and 3) the membership of and decision-making procedure of any triage committees. Results of our analysis show the majority appealed primarily to consequentialist reasoning in making allocation decisions, tempered by a largely pluralistic approach to other substantive and procedural values and ethical concepts. Medical and social criteria included medical need, co-morbidities, prognosis, age, disability and other factors, with a focus on seemingly objective medical criteria. There was little or no guidance on how to reconcile competing criteria, and little attention to internal contradictions within individual guidelines. Our analysis reveals the challenges in developing sound ethical guidance for allocating scarce medical resources, highlighting problems in operationalising ethical concepts and principles, divergence between guidelines, unresolved contradictions within the same guideline, and use of naïve objectivism in employing widely used medical criteria for allocating ICU resources.
      PubDate: 2021-10-26
      DOI: 10.1007/s10728-021-00442-0
       
  • Pandemic Risk and Standpoint Epistemology: A Matter of Solidarity

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      Abstract: Abstract Current and past pandemics have several aspects in common. It is expected that all members of society contribute to beat it. But it is also clear that the risks associated with the pandemic are different for different groups. This makes that appeals to solidarity based on technocratic risk calculations are only partially successful. Objective ‘risks of transmission’ may, for example, be trumped by risks of letting down people in need of help or by missing out certain opportunities in life. In this paper we argue that a rapprochement of the insights of standpoint epistemology with pandemic science and pandemic policy making may be an important step toward making pandemic science more accurate and pandemic calls for solidarity more effective.
      PubDate: 2021-10-25
      DOI: 10.1007/s10728-021-00443-z
       
  • The Case for Telemedical Early Medical Abortion in England: Dispelling
           Adult Safeguarding Concerns

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      Abstract: Abstract Access to abortion care has been hugely affected by the COVID-19 pandemic. This has prompted several governments to permit the use of telemedicine for fully remote care pathways, thereby ensuring pregnant people are still able to access services. One such government is that of England, where these new care pathways have been publicly scrutinised. Those opposed to telemedical early medical abortion care have raised myriad concerns, though they largely centre on matters of patient safeguarding. It is argued that healthcare professionals cannot adequately carry out their safeguarding duties if the patient is not in the room with them. These concerns lack empirical support. Emerging evidence suggests that safeguarding processes may, in fact, be more effective within telemedical abortion care pathways. In this article, we address two specific safeguarding concerns: (1) that a remote consultation prevents a healthcare professional from identifying instances of abuse, and (2) that healthcare professionals cannot reliably confirm the absence of coercion during a remote consultation. We demonstrate that such concerns are misplaced, and that safeguarding may actually be improved in telemedical care pathways as victims of abuse may find it easier to engage with services. It is inevitable that some individuals will fall through the net, but this is unavoidable even with in-person care and thus does not constitute a strong critique of the use of telemedicine in abortion care. These safeguarding concerns set aside, then, we argue that the current approval that enables telemedical early medical abortion should be afforded permanence.
      PubDate: 2021-10-23
      DOI: 10.1007/s10728-021-00439-9
       
  • Prospective Intention-Based Lifestyle Contracts: mHealth Technology and
           Responsibility in Healthcare

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      Abstract: Abstract As the rising costs of lifestyle-related diseases place increasing strain on public healthcare systems, the individual’s role in disease may be proposed as a healthcare rationing criterion. Literature thus far has largely focused on retrospective responsibility in healthcare. The concept of prospective responsibility, in the form of a lifestyle contract, warrants further investigation. The responsibilisation in healthcare debate also needs to take into account innovative developments in mobile health technology, such as wearable biometric devices and mobile apps, which may change how we hold others accountable for their lifestyles. Little is known about public attitudes towards lifestyle contracts and the use of mobile health technology to hold people responsible in the context of healthcare. This paper has two components. Firstly, it details empirical findings from a survey of 81 members of the United Kingdom general public on public attitudes towards individual responsibility and rationing healthcare, prospective and retrospective responsibility, and the acceptability of lifestyle contracts in the context of mobile health technology. Secondly, we draw on the empirical findings and propose a model of prospective intention-based lifestyle contracts, which is both more aligned with public intuitions and less ethically objectionable than more traditional, retrospective models of responsibility in healthcare.
      PubDate: 2021-09-01
      DOI: 10.1007/s10728-020-00424-8
       
  • The Doctor as Parent, Partner, Provider… or Comrade' Distribution of
           Power in Past and Present Models of the Doctor–Patient Relationship

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      Abstract: Abstract The commonly occurring metaphors and models of the doctor–patient relationship can be divided into three clusters, depending on what distribution of power they represent: in the paternalist cluster, power resides with the physician; in the consumer model, power resides with the patient; in the partnership model, power is distributed equally between doctor and patient. Often, this tripartite division is accepted as an exhaustive typology of doctor–patient relationships. The main objective of this paper is to challenge this idea by introducing a fourth possibility and distribution of power, namely, the distribution in which power resides with neither doctor nor patient. This equality in powerlessness—the hallmark of “the age of bureaucratic parsimony”—is the point of departure for a qualitatively new doctor–patient relationship, which is best described in terms of solidarity between comrades. This paper specifies the characteristics of this specific type of solidarity and illustrates it with a case study of how Swedish doctors and patients interrelate in the sickness certification practice.
      PubDate: 2021-09-01
      DOI: 10.1007/s10728-021-00432-2
       
  • A New Argument for No-Fault Compensation in Health Care: The Introduction
           of Artificial Intelligence Systems

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      Abstract: Abstract Artificial intelligence (AI) systems advising healthcare professionals will be widely introduced into healthcare settings within the next 5–10 years. This paper considers how this will sit with tort/negligence based legal approaches to compensation for medical error. It argues that the introduction of AI systems will provide an additional argument pointing towards no-fault compensation as the better legal solution to compensation for medical error in modern health care systems. The paper falls into four parts. The first part rehearses the main arguments for and against no-fault compensation. The second explains why it is likely that AI systems will be widely introduced. The third part analyses why it is difficult to fit AI systems into fault-based compensation systems while the final part suggests how no-fault compensation could provide a possible solution to such challenges.
      PubDate: 2021-09-01
      DOI: 10.1007/s10728-021-00430-4
       
  • From ‘Consent or Anonymise’ to ‘Share and Protect’: Facilitating
           

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      Abstract: Abstract There is significant research value in the secondary use of surplus human tissue which has been removed during clinical care and is stored in diagnostic archives. However, this value is limited without access to information about the person from whom the tissue was removed. As the research value of surplus tissue is often not realised until after the patient’s episode of care, it is often the case that no consent has been given for any surplus tissue to be used for research purposes. The Human Tissue Act 2004 does permit research use of surplus tissue without consent, but the researcher must not be in possession of information which could identify the person from whom the tissue was removed. Due to the commonly applied ‘consent or anonymise’ approach, linking tissue and data is challenging and full anonymisation would likely render much research on surplus tissue ineffectual. This article suggests that in recognising the value in surplus tissue linked with information about the person, a ‘share and protect’ approach which considers safeguards other than anonymisation, where obtaining consent for research use would not be feasible, would better balance the public benefit of health research with the protection of individual rights and interests than a requirement for either consent or anonymisation.
      PubDate: 2021-09-01
      DOI: 10.1007/s10728-021-00435-z
       
  • ‘We Should View Him as an Individual’: The Role of the Child’s
           Future Autonomy in Shared Decision-Making About Unsolicited Findings in
           Pediatric Exome Sequencing

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      Abstract: Abstract In debates about genetic testing of children, as well as about disclosing unsolicited findings (UFs) of pediatric exome sequencing, respect for future autonomy should be regarded as a prima facie consideration for not taking steps that would entail denying the future adult the opportunity to decide for herself about what to know about her own genome. While the argument can be overridden when other, morally more weighty considerations are at stake, whether this is the case can only be determined in concrete cases. Importantly, when children grow into adolescents, respect for future autonomy will have to give way to respecting their emerging autonomy. When pediatric exome sequencing is done for complex conditions not involving developmental delay, respect for the child’s future or emerging autonomy should be a primary consideration for those charged with deciding on behalf of the child. Building on what Emanuel and Emanuel have termed the ‘deliberative model’ of shared decision making, we argue that if parents fail to give these considerations their due, professionals should actively invite them to do so. Taking a directive stance may be needed in order to make sure that the future or emerging autonomy of the child are duly considered in the decision-making process, but also to help the parents and themselves to shape their respective roles as responsible care-givers.
      PubDate: 2021-09-01
      DOI: 10.1007/s10728-020-00425-7
       
 
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