This article presents various developments in Dutch health care policy toward a greater role for individual financial responsibility, such as cost-control measures, priority setting, rationing, and market reform. Instead of the collective responsibility that is characteristic of previous times, one can observe in government policies an increased emphasis on the need for individuals to take care of one’s own health and health care needs. Moreover, surveys point to decreasing levels of public support for “unlimited” solidarity and “irresponsible” health behavior. This (...) article attempts to answer the question of how these policies and public attitudes are limiting the ethical principles of solidarity and equal access to care that have long guided Dutch health care policy making. The authors argue that from a moral point of view, the increased emphasis on individual responsibility is acceptable as long as it does not affect solidarity with those weak and vulnerable groups who are not able to take individual responsibility, such as the demented and mentally handicapped. (shrink)
We analyse solidarity as a mixture of social justice on the onehand and a set of cultural values and ascriptions on the otherhand. The latter defines the relevant sense of belonging togetherin a society. From a short analysis of the early stages of theDutch welfare state, we conclude that social responsibility wasoriginally based in religious and political associations. In theheyday of the welfare state, institutions such as sick funds,hospitals or nursing homes became financed collectively entirelyand became accessible to people of (...) all denominations. Solidaritywas transformed in a more general category, related to the statusof Dutch citizenship. Responsibility was transformed tocollective responsibility.Financial pressures on the Welfare State have resulted in adebate on choices in health care and in a number of systemreforms, so far relatively small. In the surrounding discourse,justice was linked to private responsibility. Both fromgovernment officials and from participants in the societaldebate, moralistic overtones could be heard concerning the threatof overburdening of the health care system by citizens.In this paper, we develop a concept of reflexive solidarity thatlinks elements of social justice to conceptualisations ofresponsibility that address policy makers and health careinstitutions as well as citizens, in their role of carereceivers. A short analysis of the phenomenon of personal budgetsin care services should prove that our concept of reflexivesolidarity is not empty. Linked to, but beyond the concept ofjustice, issues of social responsibility can be addressed withoutmoralistic overtones. (shrink)
Solidarity has for a long time been referred to as the core value underpinning European health and welfare systems. But there has been debate in recent years about whether solidarity, with its alleged communitarian content, can be reconciled with the emphasis on individual freedom and personal autonomy. One may wonder whether there is still a place for solidarity, and whether the concept of justice should be embraced to analyse the moral issues regarding access to health care. In this article, I (...) will answer this question by analysing the normative foundations of the concept of justice, followed by a deeper examination of the concept of solidarity in continental philosophy. More specifically, I will compare the philosophical traditions rooted in Kant to approaches rooted in Hegel. In addition, I will present the work of Avishai Margalit on the decent society to criticize a predominantly liberal approach to access to health care. The importance of solidarity lies particularly in its emphasis on relational aspects and the role of recognition in care practices, which are usually ignored in liberal approaches to justice. However, the article will argue that solidarity is not an alternative to a rights-based concept of justice, but must be considered as a necessary complement to it. (shrink)
The transhumanist literature encompasses diverse nonnovel positions on questions of disability and obligation reflecting long-running political philosophical debates on freedom and value choice, complicated by the difficulty of projecting values to enhanced beings. These older questions take on a more concrete form given transhumanist uses of biotechnologies. This paper will contrast the views of Hughes and Sandberg on the obligations persons with "disabilities" have to enhance and suggest a new model. The paper will finish by introducing a distinction between the (...) responsibility society has in respect of the presence of impairments and the responsibility society has not to abandon disadvantaged members, concluding that questions of freedom and responsibility have renewed political importance in the context of enhancement technologies. (shrink)
This article tries to analyze the meaning and relevance of the concept of solidarity as compared to the concept of justice. While ‘justice’ refers to rights and duties , the concept of solidarity refers to relations of personal commitment and recognition . The article wants to answer the question whether solidarity and liberal justice should be seen as mutually exclusive or whether both approaches should be regarded as complementary to each other. The paper starts with an analysis of liberal theories (...) of justice which are followed by an analysis of the descriptive and a moral understanding of the concept of solidarity. The importance of solidarity lies in its relational aspects, particularly its emphasis on cooperation and commonality. The paper argues that while solidarity is more fundamental than justice, both concepts are important for the arrangement of health care practices. The paper gives special attention to the concept of decent care, reflective solidarity and humanitarian solidarity which is seen as fundamental for all health care policies and care practices. (shrink)
According to Bayertz the core meaning of solidarity is the perception of mutual obligations between the members of a community. This definition leaves open the various ways solidarity is perceived by individuals in different communities and how it manifests itself in a particular community. This paper explores solidarity as manifested in the context of families in respect of caregiving for a family member who has become dependent because of disease or illness. Though family caregiving is based on the same perception (...) of mutual obligation as the solidarity that supports welfare arrangements in society, the manifestation of solidarity in families is different. Solidarity that underpins welfare arrangements is based on a perception of mutual obligation towards an anonymous dependent other and is enforced by the government. Solidarity in families is directed towards a concrete other and is based on free choice, albeit often accompanied by a strong sense of personal duty. In this paper we try to distinguish between solidarity as a sociological concept and as a moral concept. An important moral element of solidarity, as expressed in families, is the need for recognition of family caregivers, not only of their concrete practical efforts, but also of their own identity as caregivers and as individuals. We illustrate this argument by referring to examples in the Nuffield Council on Bioethics report Dementia : ethical issues, about the experiences of family caregivers in dementia care and the importance for them of recognition of their role. (shrink)
This article investigates the scope and effects of enhanced consumer choice in health insurance that is presented as a cornerstone of the new health insurance legislation in the Netherlands that will come into effect in 2006. The choice for choice marks the current libertarian trend in Dutch health care policymaking. One of our conclusions is that the scope of enhanced choice should not be overstated due to many legal and non-legal restrictions to it. The consumer choice advocates have great expectations (...) of the impact of enhanced choice. A critical analysis of its impact demonstrates that these expectations may not become true and that enhanced consumer choice should not be perceived as the ‘magic bullet’ for many problems in health care. (shrink)
This article tries to present a broad view on the values and ethicalissues that are at stake in efforts to rationalize health policy on thebasis of economic evaluations (like cost-effectiveness analysis) andrandomly controlled clinical trials. Though such a rationalization isgenerally seen as an objective and `value free' process, moral valuesoften play a hidden role, not only in the production of `evidence', butalso in the way this evidence is used in policy making. For example, thedefinition of effectiveness of medical treatment or (...) health care serviceis heavily dependent on dominant individual or social views about thegoals of the particular treatment or service. There is also a concernthat a reliance on EBM in health policy will occur at the expense ofwidely shared social values like equity and solidarity. Moreover, thereis a concern that when economic considerations and rational proceduresbecome more influential, various `outside' groups third parties likeinsurance companies and policy makers will get a stronger influence onmedical practice which may lead to a change in the patient-providerrelationship. The authors conclude that social values and patientpreference should be explicitly addressed when health policy making isbased on economic and other scientific evidence. (shrink)
This article presents the attitudes of nurses towards three issues concerning their role in euthanasia and physician-assisted suicide. A questionnaire survey was conducted with 1509 nurses who were employed in hospitals, home care organizations and nursing homes. The study was conducted in the Netherlands between January 2001 and August 2004. The results show that less than half (45%) of nurses would be willing to serve on committees reviewing cases of euthanasia and physician-assisted suicide. More than half of the nurses (58.2%) (...) found it too far-reaching to oblige physicians to consult a nurse in the decision-making process. The majority of the nurses stated that preparing euthanatics (62.9%) and inserting an infusion needle to administer the euthanatics (54.1%) should not be accepted as nursing tasks. The findings are discussed in the context of common practices and policies in the Netherlands, and a recommendation is made not to include these three issues in new regulations on the role of nurses in euthanasia and physician-assisted suicide. (shrink)
This article analyzes the contribution Christian ethics might be able to make to the ethical debate on policy and caregiving in health and social care in the United Kingdom. The article deals particularly with the concepts of solidarity and subsidiarity which are essential in Christian social ethics and health care ethics, and which may be relevant for the ethical debate on health and social caregiving in the United Kingdom. An important argument in the article is that utilitarian and market-driven policies (...) in the National Health Service (NHS) and the social care system have marginalized the position of the elderly and have seriously impoverished the quality of care for the elderly. The neglect of the elderly and other vulnerable groups is also the result of widespread consumerist attitudes among patients and of libertarian models of noninterference which are affirmed by a public ethos of self-sufficiency and counter-dependency. Those who need care dare not make their need known to others and ask for help, while simultaneously those who could help are so intimidated by the public affirmation of privacy and negative rights that they do not dare to offer help except if this is explicitly demanded. This distant and standoffish attitude is in an important way responsible for the fact that the voice of those in need is altogether lost to the public forum. Christian ethics puts much emphasis on responsibility and solidarity with the needy other but is not able to have much impact on the delivery of care in a secularized society and health care system like the NHS. Nonetheless, Christianity still has a powerful and respected voice, by speaking up for those who cannot speak for themselves, such as the elderly and the handicapped. Christians can find allies in the ethics of care and other relational approaches in health care ethics in order to combat libertarianism, consumerism, and utilitarianism. (shrink)
Background: Issues concerning legislation and regulation with respect to the role of nurses in euthanasia and physician-assisted suicide gave the Minister for Health reason to commission a study of the role of nurses in medical end-of-life decisions in hospitals, home care and nursing homes.Aim: This paper reports the findings of a study of the role of nurses in euthanasia and physician-assisted suicide, conducted as part of a study of the role of nurses in medical end-of-life decisions. The findings for hospitals, (...) home care and nursing homes are described and compared.Method: A questionnaire was sent to 1509 nurses, employed in 73 hospitals, 55 home care organisations and 63 nursing homes. 1179 responses were suitable for analysis. The questionnaire was pilot-tested among 106 nurses, with a response rate of 85%.Results: In 37.0% of cases, the nurse was the first person with whom patients discussed their request for euthanasia or physician-assisted suicide. Consultation between physicians and nurses during the decision-making process took place quite often in hospitals and nursing homes and less frequently in home care situations . In some cases , nurses administered the euthanatics.Conclusions: The results show substantial differences between the intramural sector and the extramural sector , which are probably linked to the organisational structure of the institutions. Consultation between physicians and nurses during the decision-making process needs improvement, particularly in home care. Some nurses had administered euthanatics, although this task is by law exclusively reserved to physicians. (shrink)
This article reports the findings of a study into the role of Dutch nurses in the alleviation of pain and symptoms with a life-shortening intention, conducted as part of a study into the role of nurses in medical end-of-life decisions. A questionnaire survey was carried out using a population of 1509 nurses who were employed in hospitals, home care organizations and nursing homes. The response rate was 82.0%; 78.1% (1179) were suitable for analysis. The results show that in about half (...) of the cases (55.8%) nurses were involved in the decision making by the physician and that nurses were frequently (81.5%) involved in administering the medication. The authors' conclusion is that alleviation of pain and symptoms with a life-shortening intention represents a `grey' area, in which physicians and nurses act on the basis of personal ethical norms rather than legal rules, professional guidelines or shared moral values. (shrink)
Health care policy in the Netherlands has long been guided by the values of solidarity and equality. As a result of several forces, particularly the scarcity of resources, the retreat of the Welfare State and the introduction of market forces in health care, both values are increasingly under strain. Next to solidarity and equality, freedom of choice and financial responsibility are playing an important role in Dutch health care. Consequently, there is a growing division in Dutch heaith care between two (...) tiers, one basic tier giving access to a basic package of services and a luxury tier giving access to a higher quality of care and to services not included in the basic package. The main thesis of the article is that a two-tier system is morally justified on the condition that the basic tier is universally accessible and is based on the value of humanitarian solidarity. (shrink)
BackgroundSmart-home technologies, comprising environmental sensors, wearables and video are attracting interest in home healthcare delivery. Development of such technology is usually justified on the basis of the technology’s potential to increase the autonomy of people living with long-term conditions. Studies of the ethics of smart-homes raise concerns about privacy, consent, social isolation and equity of access. Few studies have investigated the ethical perspectives of smart-home engineers themselves. By exploring the views of engineering researchers in a large smart-home project, we sought (...) to contribute to dialogue between ethics and the engineering community.MethodsEither face-to-face or using Skype, we conducted in-depth qualitative interviews with 20 early- and mid-career smart-home researchers from a multi-centre smart-home project, who were asked to describe their own experience and to reflect more broadly about ethical considerations that relate to smart-home design. With participants’ consent, interviews were audio-recorded, transcribed and analysed using a thematic approach.ResultsTwo overarching themes emerged: in ‘Privacy’, researchers indicated that they paid close attention to negative consequences of potential unauthorised information sharing in their current work. However, when discussing broader issues in smart-home design beyond the confines of their immediate project, researchers considered physical privacy to a lesser extent, even though physical privacy may manifest in emotive concerns about being watched or monitored. In ‘Choice’, researchers indicated they often saw provision of choice to end-users as a solution to ethical dilemmas. While researchers indicated that choices of end-users may need to be restricted for technological reasons, ethical standpoints that restrict choice were usually assumed and embedded in design.ConclusionsThe tractability of informational privacy may explain the greater attention that is paid to it. However, concerns about physical privacy may reduce acceptability of smart-home technologies to future end-users. While attention to choice suggests links with privacy, this may misidentify the sources of privacy and risk unjustly burdening end-users with problems that they cannot resolve. Separating considerations of choice and privacy may result in more satisfactory treatment of both. Finally, through our engagement with researchers as participants this study demonstrates the relevance of ethics as a critical partner to smart-home engineering. (shrink)
The question of whether old age should or should not play a role in medical decision-making for the elderly patient is regularly debated in ethics and medicine. In this paper we investigate exactly how age influences the decision-making process. To explore the normative argumentation in the decisions regarding an elderly patient we make use of the argumentation model advanced by Toulmin. By expanding the model in order to identify normative components in the argumentation process it is possible to analyse the (...) way that age-related value judgements influence the medical decision-making process. We apply the model to practice descriptions made by medical students after they had attended consultations and meetings in medical practice during their clinical training. Our results show the pervasive character of age-related value judgements. They influence the physician’s decision in several ways and at several points in the decision-making process. Such explicit value judgements were not exclusively used for arguments against further diagnosis or treatment of older patients. We found no systematic “ageist” pattern in the clinical decisions by physicians. Since age plays such an important, yet hidden role in the medical decision-making process, we make a plea for revealing such normative argumentation in order to gain transparency and accountability in this process. An explicit deliberative approach will make the medical decision-making process more transparent and improve the physician–patient relationship, creating confidence and trust, which are at the heart of medical practice. (shrink)
Deprescribing is the term used to describe the process of withdrawal of an inappropriate medication supervised by a clinician. This article presents a discussion of how the Four Principles of biomedical ethics that may guide medical practitioners’ prescribing practices apply to deprescribing medications in older adults. The view of deprescribing as an act creates stronger moral duties than if viewed as an omission. This may explain the fear of negative outcomes which has been reported by prescribers as a barrier to (...) deprescribing. Respecting the autonomy of older adults is complex as they may not wish to be active in the decision-making process; they may also have reduced cognitive function and family members may therefore have to step in as surrogate decision-makers. Informed consent is intended as a process of information giving and reflection, where consent can be withdrawn at any time. However, people are rarely updated on the altered risks and benefits of their long-term medications as they age. Cessation of inappropriate medication use has a large financial benefit to the individual and the community. However, the principle of justice also dictates equal rights to treatment regardless of age. (shrink)
In a qualitative study, 22 stroke patients undergoing rehabilitation in three nursing homes were interviewed about constraints on and improvements in their autonomy and about approaches of health professionals regarding autonomy. The data were analysed using grounded theory, with a particular focus on the process of regaining autonomy. An approach by the health professionals that was responsive to changes in the patients’ autonomy was found to be helpful for restoration of their autonomy. Two patterns in health professionals’ approach appeared to (...) be facilitatory: (1) from full support on admission through moderate support and supervision, to reduced supervision at discharge; and (2) from paternalism on admission through partial paternalism (regarding treatment) to shared decision making at discharge. The approach experienced by the patients did not always match their desires regarding their autonomy. Support and supervision were reduced over time, but paternalism was often continued too long. Additionally, the patients experienced a lack of information. Tailoring interventions to patients’ progress in autonomy would stimulate their active participation in rehabilitation and in decision making, and would improve patients’ preparation for autonomous living after discharge. (shrink)
This article tries to analyze the meaning of a decent minimum of health care, by confronting the idea of decent care with the concept of justice. Following the ideas of Margalith about a decent society, the article argues that a just minimum of care is not necessarily a decent minimum. The way this minimum is provided can still humiliate individuals, even if the end result is the best possible distribution of the goods as seen from the viewpoint of justice. This (...) analysis is combined with an analysis from the perspective of solidarity, particularly of reflective solidarity, as a way to develop decent care, which is care that does not humiliate individuals and maintains their dignity. (shrink)
Smart-home technologies, comprising environmental sensors, wearables and video are attracting interest in home healthcare delivery. Development of such technology is usually justified on the basis of the technology’s potential to increase the autonomy of people living with long-term conditions. Studies of the ethics of smart-homes raise concerns about privacy, consent, social isolation and equity of access. Few studies have investigated the ethical perspectives of smart-home engineers themselves. By exploring the views of engineering researchers in a large smart-home project, we sought (...) to contribute to dialogue between ethics and the engineering community. Either face-to-face or using Skype, we conducted in-depth qualitative interviews with 20 early- and mid-career smart-home researchers from a multi-centre smart-home project, who were asked to describe their own experience and to reflect more broadly about ethical considerations that relate to smart-home design. With participants’ consent, interviews were audio-recorded, transcribed and analysed using a thematic approach. Two overarching themes emerged: in ‘Privacy’, researchers indicated that they paid close attention to negative consequences of potential unauthorised information sharing in their current work. However, when discussing broader issues in smart-home design beyond the confines of their immediate project, researchers considered physical privacy to a lesser extent, even though physical privacy may manifest in emotive concerns about being watched or monitored. In ‘Choice’, researchers indicated they often saw provision of choice to end-users as a solution to ethical dilemmas. While researchers indicated that choices of end-users may need to be restricted for technological reasons, ethical standpoints that restrict choice were usually assumed and embedded in design. The tractability of informational privacy may explain the greater attention that is paid to it. However, concerns about physical privacy may reduce acceptability of smart-home technologies to future end-users. While attention to choice suggests links with privacy, this may misidentify the sources of privacy and risk unjustly burdening end-users with problems that they cannot resolve. Separating considerations of choice and privacy may result in more satisfactory treatment of both. Finally, through our engagement with researchers as participants this study demonstrates the relevance of ethics as a critical partner to smart-home engineering. (shrink)
This book critically explores and analyses the scientific and ethical debates surrounding cognitive enhancers. Including contributions from neuroscientists, neuropsychopharmacologists, ethicists, philosophers, public health professionals, and policy researchers, the book offers a multidisciplinary, critical consideration of this topic.
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