Online research in philosophy

Client participation in elderly care organizations requires shifting traditional power relations and establishing communicative action that involves the lifeworlds of clients and professionals alike. This article describes a particular form of client participation in which one client was part of a team of professionals in a residential care home. Their joint remit was to plan the implementation of a new personal care file for residents. We describe the interactions within this team through an ethnodrama, based on participant observations and the (...) embodied presence of the researcher (first author). The narratives and voices of all team members are dramatized in this ethnodrama. Throughout the project the team members experienced confusion relating to the confrontation between lifeworld and system, as experienced by the client and professionals in the team. We analyze these tensions by making use of a Habermasian theoretical framework. We conclude that forms for collective client participation in residential care homes should be developed based on communicative action between clients and professionals, with room for emotional engagement. (shrink)

Changes in modern societies originate the perception that ethical behaviour is essential in organization’s practices especially in the way they deal with aspects such as human rights. These issues are usually under the umbrella of the concept of social responsibility. Recently the Report of the International Bioethics Committee of UNESCO on Social Responsibility and Health has addressed this concept of social responsibility in the context of health care delivery suggesting a new paradigm in hospital governance. The objective of this paper (...) is to address the issue of corporate social responsibility in health care, namely in the hospital setting, emphasising the special governance arrangements of such complex organisations and to evaluate if new models of hospital management (entrepreneurism) will need robust mechanisms of corporate governance to fulfil its social responsiveness. The scope of this responsible behaviour requires hospitals to fulfil its social and market objectives, in accordance to the law and general ethical standards. Social responsibility includes aspects like abstention of harm to the environment or the protection of the interests of all the stakeholders enrolled in the deliverance of health care. In conclusion, adequate corporate governance and corporate strategy are the gold standard of social responsibility. In a competitive market hospital governance will be optimised if the organization culture is reframed to meet stakeholders’ demands for unequivocal assurances on ethical behaviour. Health care organizations should abide to this new governance approach that is to create organisation value through performance, conformance and responsibility. (shrink)

In previous literature, ethicists mention several goals of Clinical Ethics Support (CES). It is unknown what key persons in healthcare institutions see as main–—and sub-goals of CES. This article presents the goals of CES as perceived by board members and members of ethics support staff. This is part of a Dutch national research using a mixed methods design with questionnaires, focus groups and interviews. Quantitative and qualitative data were analyzed and combined in an iterative process. Four main clusters of goals (...) were found: 1) encouraging an ethical climate, 2) fostering an accountable and transparent organization, 3) developing professionalism and a final goal, overarching the previous three, 4) good care. Most important sub-goals of CES were: attention for ethical issues, raising awareness of ethical issues, fostering ethical reflection and supporting employees. The article ends with a discussion on the desirability to further operationalize the general goal of good care, the context-boundedness of our findings and the need to relate goals of CES to the features of organizational cultures to further improve the integration of CES in healthcare institutions. (shrink)

This paper considers the utility of Ethnomethodology (EM) for the study of healthcare ethics as part of the empirical turn in Bioethics. I give a brief introduction to EM through its respecification of sociology, the specific view on the social world this generates and EM's posture of ‘indifference’. I then take a number of EM concepts and articulate each in the context of an EM study of healthcare ethics in professional practice. Having given an overview of the relationship and perspective (...) EM might bring to the professional practice of healthcare ethics I consider whether and how such an approach could be deployed. Whilst an ethnographic study might be problematic I suggest a number of alternative methods through which such EM research could be accomplished. I conclude with the suggestion that, as a particular approach to sociological research, EM offers good deal of potential for the empirical study of healthcare ethics in practice which could result in an improved reflexive understanding of professional ethical practices in bioethics. (shrink)

The aim of this study was to explore the relational aspects of the consent process for HPV vaccination as experienced by school nurses, based on the assumption that individuals have interests related to persons close to them, which is not necessarily to be apprehended as a restriction of autonomy; rather as a voluntary and emotionally preferred involvement of their close ones. Thirty Swedish school nurses were interviewed in five focus groups, before the school based vaccination program had started in Sweden. (...) The empirical results were discussed in light of theories on relational autonomy. The school nurses were convinced that parental consent was needed for HPV vaccination of 11-year-old girls, but problems identified were the difficulty to judge when a young person is to be regarded as autonomous and what to do when children and parents do not agree on the decision. A solution suggested was that obtaining informed consent in school nursing is to be seen as a deliberative process, including the child, the parents and the nurse. The nurses described how they were willing strive for a dialogue with the parents and negotiate with them in the consent process. Seeing autonomy as relational might allow for a more dialogical approach towards how consent is obtained in school based vaccination programs. Through such an approach, conflicts of interests can be made visible and become possible to deal with in a negotiating dialogue. If the school nurses do not focus exclusively on accepting the individual parent’s choice, but strive to engage in a process of communication and deliberation, the autonomy of the child might increase and power inequalities might be reduced. (shrink)

One generally considered plausible way to allocate resources in health care is according to people’s needs. In this paper I focus on a somewhat overlooked issue, that is the conceptual structure of health care needs. It is argued that what conceptual understanding of needs one has is decisive in the assessment of what qualifies as a health care need and what does not. The aim for this paper is a clarification of the concept of health care need with a starting (...) point in the general philosophical discussion about needs. I outline three approaches to the concept of need and argue that they all share the same conceptual underpinnings. The concept of need is then analyzed in terms of a subject x needing some object y in order to achieve some goal z. I then discuss the relevant features of the object y and the goal z which make a given need qualify as a health care need and not just a need for anything. (shrink)

Many older people in western countries express a desire to live independently and stay in control of their lives for as long as possible in spite of the afflictions that may accompany old age. Consequently, older people require care at home and additional support. In some care situations, tension and ambiguity may arise between professionals and clients whose views on risk prevention or health promotion may differ. Following Antonovsky’s salutogenic framework, different perspectives between professionals and clients on the pathways that (...) lead to health promotion might lead to mechanisms that explain the origin of these tensions and how they may ultimately lead to reduced responsiveness of older clients to engage in care. This is illustrated with a case study of an older woman living in the community, Mrs Jansen, and her health and social care professionals. The study shows that despite good intentions, engagement, clear division of tasks and tailored care, the responsiveness to receive care can indeed not always be taken for granted. We conclude that to harmonize differences in perspectives between professionals and older people, attention should be given to the way older people endow meaning to the demanding circumstances they encounter (comprehensibility), their perceived feelings of control (manageability), as well as their motivation to comprehend and manage events (meaningfulness). Therefore, it is important that both clients and professionals have an open mind and attempt to understand each others’ perspective, and have a dialogue with each other, taking the life narrative of clients into account. (shrink)

According to the Substituted Judgment Standard a surrogate decision maker ought to make the decision that the incompetent patient would have made, had he or she been competent. This standard has received a fair amount of criticism, but the objections raised are often wide of the mark. In this article we discuss three objections based on empirical research, and explain why these do not give us reason to abandon the Substituted Judgment Standard.

There is a fundamental inconsistency in Western society’s treatment of non-human animals on the one hand, and of human foetuses on the other. While most Western countries allow the butchering of animals and their use in experimentation, this must occur under carefully controlled conditions that are intended to minimize their pain and suffering as much as possible. At the same time, most Western countries permit various abortion methods without similar concerns for the developing fetus. The only criteria for deciding which (...) abortion method is used centre in the stage of the pregnancy, the size of the fetus, the health of the pregnant woman and the physician’s preference. This is out of step with the underlying ethos of animal cruelty legislation, cannot be justified ethically and should be rectified by adjusting abortion methods to the capacity of the fetus to experience nociception and/or pain. (shrink)

The label ‘Translational Research’ (TR) has become ever more popular in the biomedical domain in recent years. It is usually presented as an attempt to bridge a supposed gap between knowledge produced at the lab bench and its use at the clinical bedside. This is claimed to help society harvest the benefits of its investments in scientific research. The rhetorical as well as moral force of the label TR obscure, however, that it is actually used in very different ways. In (...) this paper, we analyse the scientific discourse on TR, with the aim to disentangle and critically evaluate the different meanings of the label. We start with a brief reconstruction of the history of the concept. Subsequently, we unravel how the label is actually used in a sample of scientific publications on TR and examine the presuppositions implied by different views of TR. We argue that it is useful to distinguish different views of TR on the basis of three dimensions, related to (1) the construction of the ‘translational gap’; (2) the model of the translational process; and (3) the cause of the perceived translational gap. We conclude that the motive to make society benefit from its investments in biomedical science may be laudable, but that it is doubtful whether the dominant views of TR will contribute to this end. (shrink)

The study examined the question of who should make decisions for a National Health Scheme about the allocation of health resources when the health states of beneficiaries could change because of adaptation. Eight semi-structured small group discussions were conducted. Following focus group theory, interviews commenced with general questions followed by transition questions and ended with a ‘focus’ or ‘key’ question. Participants were presented with several scenarios in which patients adapted to their health states. They were then asked their views about (...) the appropriate role of the public, patients and health professionals in making social judgements of quality of life. After discussion and debate, all groups were asked the key question: ‘In light of adaptation, who should evaluate quality of life for the purpose of setting priorities in the allocation of health care?’ In all groups participants presented strong arguments for and against decision making by patients, the public and health professionals. However, most groups thought a representative body which included a range of perspectives should make the relevant judgements. This is at odds with the recommendations in most national pharmaceutical guidelines. The main conclusion of the paper is that health economists and other researchers should explore the possibility of adopting a deliberative, consensus-based approach to evaluating health-related quality of life when such judgements are to be used to inform priority setting in a public system. (shrink)

How can one be both a philosophical ethicist and a democrat? In this article I conclude that it can be difficult to reconcile the two roles. One involves understanding, and reconciling, the conflicting views of citizens, and the other requires the pursuit of truth through reason. Nevertheless, an important function of philosophy and ethics is to inform and improve policy. If done effectively, we could expect better, and more just, laws and policies, thereby benefiting many lives. So applying philosophical thinking (...) to policy is an important job. However, it comes with substantial difficulties, not least in reconciling, or choosing between, competing philosophical theories. Despite the importance of the task, and the apparent obstacles, there is relatively little literature on how to apply ethics to real-world policy-making. Democracies need ethicists who can engage in democratic debate and bridge the gap between philosophy and public policy. I offer some tactics here. (shrink)

In this article I defend a rule utilitarian approach to paternalistic policies in research with human participants. Some rules that restrict individual autonomy can be justified on the grounds that they help to maximize the overall balance of benefits over risks in research. The consequences that should be considered when formulating policy include not only likely impacts on research participants, but also impacts on investigators, institutions, sponsors, and the scientific community. The public reaction to adverse events in research (such as (...) significant injury to participants or death) is a crucial concern that must be taken into account when assessing the consequences of different policy options, because public backlash can lead to outcomes that have a negative impact on science, such as cuts in funding, overly restrictive regulation and oversight, and reduced willingness of individuals to participate in research. I argue that concern about the public reaction to adverse events justifies some restrictions on the risks that competent, adult volunteers can face in research that offers them no significant benefits. The paternalism defended here is not pure, because it involves restrictions on the rights of investigators in order to protect participants. It also has a mixed rationale, because individual autonomy may be restricted not only to protect participants from harm but also to protect other stakeholders. Utility is not the sole justification for paternalistic research policies, since other considerations, such as justice and respect for individual rights/autonomy, must also be taken into account. (shrink)

This article aims to clarify the notion of a psychiatric disability. The article uses conceptual analysis, examining and applying established definitions of (general) disability to psychiatric disabilities. This analysis reveals that disability as inability to perform according to expectations or norms is related to impairment as deviation from the (statistical) norm, while disability as inability to achieve (personal) goals is related to impairment as deviation from the (personal) ideal. These two views of impairment and disability are distinct from the self-organization (...) view of impairment as disrupted self-creation or disrupted self-repair and of disability as disrupted whole person self-compensation (in relation to an impairment). All these three views of disability pertain to psychiatric disability. Although there is nothing necessarily psychiatric about psychiatric disability other than the psychiatric impairment related to it, the life course and life circumstances typical of many people with (severe) psychiatric disorders may lead to disability and may thus confer some (psychiatric) specificity on this disability. This analysis may facilitate research on specific psychiatric disabilities and a broader scope for psychiatric rehabilitation. (shrink)

In the UK, regulation of clinical services is being restructured. We consider two clinical procedures, abortion and IVF treatment, which have similar ethical and political sensitivities. We consider factors including the law, licensing, inspection, amount of paperwork and reporting requirements, the reception by practitioners and costs, to establish which field has the greater ‘regulatory burden’. We test them based on scientific, ethical, social, political factors that might explain differences. We find that regulatory burden borne by IVF services is greater than (...) in abortion, but none of the explanatory theses can provide a justification of this phenomenon. We offer an alternative explanation based on regulatory ‘overspill’ from research regulation and policy making, conceptualisation of risk regulation and a high public profile that locks a regulator into self-preservation. (shrink)

We have studied ethical considerations of care among health professionals when treating and setting priorities for elderly patients in Norway. The views of medical doctors and nurses were analysed using qualitative methods. We conducted 21 in depth interviews and 3 focus group interviews in hospitals and general practices. Both doctors and nurses said they treated elderly patients different from younger patients, and often they were given lower priorities. Too little or too much treatment, in the sense of too many interventions (...) and too much drugs, combined with too little care and comfort, was admitted as a relatively frequent yet unwanted consequence of the way clinical priorities were set for elderly patients. This was explained in terms of elderly patients not tolerating the same treatment as younger patients, and questions were raised about the quality of life of many elderly patients after treatment. These explanations were frequently referred to as medically sound decision making. Other explanations had little to do with medically sound decisions. These often included deep frustration with executive guidelines and budget constraints. (shrink)

According to HealthCare.gov, by improving access to quality health for all Americans, the Affordable Care Act (ACA) will reduce disparities in health insurance coverage. One way this will happen under the provisions of the ACA is by creating a new health insurance marketplace (a health insurance exchange) by 2014 in which “all people will have a choice for quality, affordable health insurance even if a job loss, job switch, move or illness occurs”. This does not mean that everyone will have (...) whatever insurance coverage he or she wants. The provisions of the ACA require that each of the four benefit categories of plans (known as bronze, silver, gold and platinum) provides no less than the benefits available in an “essential health benefits package”. However, without a clear understanding of what criteria must be satisfied for health care to be essential, the ACA’s requirement is much too vague and open to multiple, potentially conflicting interpretations. Indeed, without such understanding, in the rush to provide health insurance coverage to as many people as is economically feasible, we may replace one kind of disparity (lack of health insurance) with another kind of disparity (lack of adequate health insurance). Thus, this paper explores the concept of “essential benefits”, arguing that the “essential health benefits package” in the ACA should be one that optimally satisfies the basic needs of the people covered. (shrink)

The decision by the Department of Health to introduce amendments to the uniform and workwear policy for the NHS in response to increasing problems with infection control seemed uncontroversial. There was, however, some difficulty with implementing the policy, which arose largely because of the conflict this caused for staff who wished to keep their arms covered for reasons which stemmed from religious beliefs. This paper uses textual analysis to examine how those reasons and challenges were discussed in online commentary within (...) a medical and nursing journal. The papers shows that there was a marked difference in how the two groups of professionals responded to the changes to workwear, and exposes a worrying degree of religious intolerance expressed by contributors to the nursing journal. (shrink)

What challenges must a principle of need for prioritisations in health care meet in order to be plausible and practically useful? Some progress in answering this question has recently been made by Hope, Østerdal and Hasman. This article continue their work by suggesting that the characteristic feature of principles of needs is that they are sufficientarian, saying that we have a right to a minimally acceptable or good life or health, but nothing more. Accordingly, principles of needs must answer two (...) distributive questions: when do we have sufficient and how should we prioritise among those who do not yet have a sufficiency? Furthermore, it is argued that Roger Crisp’s theory of need, which combines sufficientarianism with prioritarianism below the threshold of need, is better equipped than alternatives to answer these questions as well as meeting the challenges formulated by Hope, Østerdal and Hasman. However, Crisp’s theory faces two major challenges. First, it has to say something about the currency of distribution: a principle of need must be complemented either with a theory on the human good or a theory about the proper goals of health care. Second, it has to say something about where the threshold should be set. However, any attempt to set a threshold seems morally arbitrary in the light of the sufficientarian idea that those just above the threshold never should be given priority over those just below the threshold. (shrink)

This paper considers the way in which English law safeguards fundamental rights to respect for faith and belief in relation to the delivery of health care. It explores the implications of the Human Rights Act 1998 and the Equality Act 2010. It explores some of the challenges in attempting to reconcile fundamental rights to faith and belief and the delivery of health care, both now and in the future and whether this is a realistic aspiration in a state funded health (...) care service. (shrink)

The current U.S. health care system, with both rising costs and demands, is unsustainable. The combination of a sense of individual entitlement to health care and limited acceptance of individual responsibility with respect to personal health has contributed to a system which overspends and underperforms. This sense of entitlement has its roots in a perceived right to health care. Beginning with the so-called moral right to health care (all life is sacred), the issue of who provides health care has evolved (...) as individual rights have trumped societal rights. The concept of government providing some level of health care ranges from limited government intervention, a ‘negative right to health care’ (e.g., prevention of a socially-caused, preventable health hazard), to various forms of a ‘positive right to health care’. The latter ranges from a decent minimum level of care to the best possible health care with access for all. We clarify the concept of legal rights as an entitlement to health care and present distributive and social justice counter arguments to present health care as a privilege that can be provided/earned/altered/revoked by governments. We propose that unlike a ‘right’, which is unconditional, a ‘privilege’ has limitations. Going forward, expectations about what will be made available should be lowered while taking personal responsibility for one’s health must for elevated. To have access to health care in the future will mean some loss of personal rights (e.g., unhealthy behaviors) and an increase in personal responsibility for gaining or maintaining one’s health. (shrink)

Explicit forms of rationing have already been implemented in some countries, and many of these prioritization systems resort to Norman Daniels’ “accountability for reasonableness” methodology. However, a question still remains: is “accountability for reasonableness” not only legitimate but also fair? The objective of this paper is to try to adjust “accountability for reasonableness” to the World Health Organization’s holistic view of health and propose an evolutionary perspective in relation to the “normal” functioning standard proposed by Norman Daniels. To accomplish this (...) purpose the authors depart from the “normal” functioning standard to a model that promotes effective opportunity for everyone in health care access, because even within the “normal” functioning criteria some treatments and medical interventions should have priority upon others. Equal opportunity function is a mathematical function that helps to hierarchize moral relevant necessities in health care according to this point of view. It is concluded, first, that accountability for reasonableness is an extremely valuable tool to address the issue of setting limits in health care; second, that what is called in this paper “equal opportunity function” might reflect how accountability for reasonableness results in fair limit-setting decisions; and third, that this methodology must be further specified to best achieve fair limit-setting decisions. Indeed, when resources are especially scarce the methodology suggested in this paper might allow not only prioritizing in an “all or nothing” basis but can contribute to a hierarchy system of priorities in health care. (shrink)

This paper raises some issues about understanding religion, religions and spirituality in health care to enable a more critical mutual engagement and dialogue to take place between health care institutions and religious communities and believers. Understanding religions and religious people is a complex, interesting matter. Taking into account the whole reality of religion and spirituality is not just about meeting specific needs, nor of trying to ensure that religious people abandon their distinctive beliefs and insights when they engage with health (...) care institutions and policies. Members of religious groups and communities form an integral part of the structure and fabric of health care delivery, whether as users or in delivery capacities. Religion is both facilitator and resistor, friend and critic, for health care institutions, providers and workers. (shrink)

This paper offers critical reflection on the contemporary tendency to approach health care in instrumentalist terms. Instrumentalism is means-ends rationality. In contemporary society, the instrumentalist attitude is exemplified by the relationship between individual consumer and a provider of goods and services. The problematic nature of this attitude is illustrated by Michael Oakeshott’s conceptions of enterprise association and civil association. Enterprise association is instrumental; civil association is association in terms of an ethically delineated realm of practices. The latter offers a richer (...) ethical conception of the relation between person and society than instrumentalism does. Oakeshott’s conception is further illustrated by reflection on the connection between morality and religion that he explores in an early essay concerning “religious sensibility”. Religious sensibility turns on the acknowledgement of the vulnerability of the self to the vicissitudes of life. This vulnerability cannot be bargained over instrumentally without imperilling the self. Religious sensibility is thus a valuable resource for criticising instrumentalist attitudes. It allows for the cultivation of ethical self-understanding that is essential to comprehending the conditions in virtue of which genuine civil life is possible. These conditions need to be taken into account in health care. Health care is not simply about substantive wants. It also necessarily concerns the universal and constant condition of being prey to illness that is the common lot of all citizens. (shrink)

This paper analyses the role chaplaincy plays in providing religious and spiritual care in the UK’s National Health Service. The approach considers both the current practice of chaplains and also the wider changes in society around beliefs and public service provision. Amid a small but growing literature about spirituality, health and illness, I shall argue that the role of the chaplain is changing and that such change is creating pressures on the identity and performance of the chaplain as a religiously (...) authorised health worker. I shall question whether either orthodox belief or religious belonging have any significant bearing on the patients’ demand for chaplaincy services. Utilising an example of chaplaincy work I shall argue that patient need constitutes the strongest platform for both practice development and an articulated understanding of what chaplains bring to health care. Drawing on a case study the definition and interpretation of spiritual need will be discussed in relation to chaplaincy practice. In conclusion, I shall set out the case for effective research to establish with greater precision the detail of the chaplain’s practice within a state-funded health system. (shrink)

Currently, patients are expected to take control over their health and their life and act as independent users and consumers. Simultaneously, health care policy demands patients are expected to self manage their disease. This article critically questions whether this is a realistic expectation. The paper presents the auto-ethnographic narrative of the first author, which spans a period of 27 years, from 1985 to 2012. In total nine episodes were extracted from various notes, conversations and discussions in an iterative process. Each (...) of these episodes was condensed around a ‘critical moment’ as perceived by the “self”. The critical moments in the illness process vary between newly encountered problems with basic needs and mourning, to renewed strength and the desire to grow, embracing new situations. Being confronted with and living with a chronic illness involves periods of anxiety and self centredness alternating with strength and advocating the interests of peer-patients. These episodes of emotion, confusion and refinding a balance have a cyclic pattern. The narrative illustrates the vulnerability and dependency of a patient with a chronic disease. The discussion relates this to mainstream dominant views on patients ‘in control of their own life’. The narrative illustrates, that the vulnerability and dependency of the patient are key factors to take into account in health care policy. The narrative provides a counter story, challenging current thinking in terms of strength, selfmanagement, patients’ own control and independent role. (shrink)

The recent confirmation of the constitutionality of the Obama administration’s Patient Protection and Affordable Care Act (PPACA) by the US Supreme Court has brought to the fore long-standing debates over individual liberty and religious freedom. Advocates of personal liberty are often critical, particularly in the USA, of public health measures which they deem to be overly restrictive of personal choice. In addition to the alleged restrictions of individual freedom of choice when it comes to the question of whether or not (...) to purchase health insurance, opponents to the PPACA also argue that certain requirements of the Act violate the right to freedom of conscience by mandating support for services deemed immoral by religious groups. These issues continue the long running debate surrounding the demands of religious groups for special consideration in the realm of health care provision. In this paper I examine the requirements of the PPACA, and the impacts that religious, and other ideological, exemptions can have on public health, and argue that the exemptions provided for by the PPACA do not in fact impose unreasonable restrictions on religious freedom, but rather concede too much and in so doing endanger public health and some important individual liberties. (shrink)