Smart homes, private homes? An empirical study of technology researchers' perceptions of ethical issues in developing smart-home health technologies.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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 (bio)ethics as a critical partner to smart-home engineering.

Solidarity, justice, and recognition of the other.

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 (with emphasis on autonomy and individual rights) to approaches rooted in Hegel (with emphasis on individual relations of recognition). 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.

The Ethics of Deprescribing in Older Adults.

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 (beneficence, non-maleficence, autonomy, and justice) 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.

Family solidarity and informal care: the case of care for people with dementia.

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.

How 'decent' is a decent minimum of health care?

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.

Human infertility: is medical treatment enough? A cross-sectional study of a sample of Italian couples.

OBJECTIVE: To explore infertile couples' well-being, needs and drop-out rates considering their previous gynaecological history, treatments and support received. METHODS: Self-reported questionnaires and a telephone follow-up were used to gather data from a sample of 57 Italian couples undergoing first-step procedures for infertility treatment. The questions concerned socio-demographic and personality factors, global perspective on generation, childbearing motivation, intra-psychic and relational dimensions. RESULTS: The study found a strong need for psychological and ethical counselling and showed that drop-out rates were related to psychological discontent. Among couples who had a longer history of infertility, those who had no previous treatments presented higher dyadic adjustment than those who had an history of previous treatments. Moreover, the study provides evidences of the stronger need for personal support for couples who had undergone previous treatments, and for psychological and ethical support for couples with previous generative failures. It also showed that there were beneficial effects to attending to couples' religious and ethical needs. CONCLUSION: Professional care for those who are undergoing or have undergone fertility treatment should (i) embrace a broader and more comprehensive perspective to understand infertile couples' experience and should (ii) provide appropriate therapy to cope with these experiences.

'Facing the future': the government's real agenda for health visitors.

This paper draws on the ideas of Foucault to analyse the government's recent review of the role of health visitors in England, 'Facing the future'. It outlines the Foucauldian concepts of discourse, knowledge and power and examines the review document following an accepted six-step process for the analysis of discourse. The analysis considers how 'Facing the future' constructs the present and future roles of health visitors, and elucidates the 'regimes of truth' that operate in official policy. It highlights the way in which the document proposes a shift away from health visitors' traditional emphasis on building supportive relationships with clients, toward a stronger emphasis on outcome-oriented service provision by multi-skilled teams. In line with contemporary public health discourse, 'Facing the future' also reinforces the future role of health visitors as being one that supports individuals to make lifestyle changes to improve health rather than addressing wider environmental and social determinants. Although 'Facing the future' purports to reflect a consultative review and to encourage debate within the health visiting profession, its form is more akin to a promotional document to implement government proposals for social change.

Is rationing the inevitable consequence of medical advance?

The past decades have seen an impressive advance in medical technology. However, there are concerns about the growing costs of medical technology and the need to ration health care services. Some economists argue that the use of technology might be expensive now but that it would be unwise to ration technological advances as they will save money in the long-term. The author argues that increased productivity in health care does not necessarily lead to reduction of costs. In fact, it has often resulted in increased costs because such innovations made possible a widening of the indications for the treatment. Rationing of medical technology is inevitable, as further advances of technology will lead to higher pressures on the financing of the public health care system and the increased removal from the basic package of long-term care services for chronic conditions, the provision of which is an important responsibility of our society.

Increasing individual responsibility in Dutch health care: is solidarity losing ground?

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.

Euthanasia and assisted suicide in Dutch hospitals: the role of nurses.

AIM: To report a study on the role of nurses in euthanasia and physician-assisted suicide in hospitals, conducted as part of a wider study on the role of nurses in medical end-of-life decisions. BACKGROUND: Issues concerning legislation and regulation with respect to the role of nurses in euthanasia and physician-assisted suicide gave the Dutch Minister for Health reason to commission a study on the role of nurses in medical end-of-life decisions in hospitals, homecare and nursing homes. METHOD: A questionnaire was sent in 2003 to 692 nurses employed in 73 hospital locations. The response suitable for analysis was from 532 (76.9%) nurses. Data were quantitatively analysed using spss version 11.5 for Windows. RESULTS: In almost half of the cases (45.1%), the nurse was the first with whom patients discussed their request for euthanasia or physician-assisted suicide. Consultations between physicians and nurses quite often took place (78.8%). In several cases (15.4%), nurses themselves administered the euthanatics with or without a physician. It is not self-evident that hospitals have guidelines concerning euthanasia/physician-assisted suicide. CONCLUSIONS: In the decision-making process, the consultation between the physician and the nurse needs improvement. In administering the euthanatics, physicians should take responsibility and should not leave these actions to nurses. Guidelines may play an important role to improve the collaboration between physicians and nurses and to prevent procedural, ethical and legal misunderstandings. RELEVANCE TO CLINICAL PRACTICE: Nurses in clinical practice are often closely involved in the last stage of a person's life. Consequently, they are often confronted with caring for patients requesting euthanasia or physician-assisted suicide. The results provide relevant information and may help nurses in defining their role in euthanasia and physician-assisted suicide, especially in case these practices should become legalised.

Dutch nurses' attitudes towards euthanasia and physician-assisted suicide.

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.

Recognition of client values as a basis for tailored care: the view of Dutch expert patients and family caregivers.

In the Netherlands confusion is signalled about the introduction of new care concepts like demand-oriented care. The aim of this article is to explore the phenomenon 'interaction aimed at care tailored to the client demand' as seen by expert clients: patients and their family caregivers. Focus interviews were held with expert patients and expert family caregivers of the 'Dutch Council of the Chronically ill and the Disabled'. Grounded theory methodology was used to analyse the results. Recognition by the professional of client values underlying their demand (uniqueness, comprehensiveness, continuity of life, fairness and autonomy) and underlying the care-relationship (equality, partnership and interdependence) emerged as central element within the interaction. Feelings of recognition with the client seem to reinforce autonomy, self-esteem and participation. Recognition was optimally felt in a dialogue. Four professional competencies could be identified related to recognition: attentiveness (ongoing actions to know and understand the patient); responsiveness (active, committed and responsible care guided by respect of patient identity); being a critical partner in care (giving and grounding professional opinion and discuss boundaries); being a developer of client competencies (facilitating and developing client participation within care). The findings offer possibilities to operationalize care concepts aimed at tailored care. Further research aimed at refining and testing the hypothesis developed is recommended.

The needs of terminally ill patients at home: directing one's life, health and things related to beloved others.

This article describes the results of a grounded theory study among terminally ill patients (with a life expectancy of less than three months) at home (n = 13, aged 39-83). The most commonly recurring theme identified in the analysis is 'directing', in the sense of directing a play. From the perspectives of patients in our study, 'directing' concerns three domains: 1) directing one's own life; 2) directing one's own health and health care; and 3) directing things related to beloved others (in the meaning of taking care of beloved ones). The patient's directing is affected by impeding and facilitating circumstances: the patient's needs and problems in the physical, psychological and existential/spiritual domain, and the support by family members and providers. Supporting patients and families, stimulating the patients' directing, giving attention to all domains of needs and counselling patients' families in the terminal phase are issues that need attention and warrant further investigation.

Evidence-based medicine as an instrument for rational health policy.

This article tries to present a broad view on the values and ethical issues that are at stake in efforts to rationalize health policy on the basis of economic evaluations (like cost-effectiveness analysis) and randomly controlled clinical trials. Though such a rationalization is generally seen as an objective and 'value free' process, moral values often play a hidden role, not only in the production of 'evidence', but also in the way this evidence is used in policy making. For example, the definition of effectiveness of medical treatment or health care service is heavily dependent on dominant individual or social views about the goals of the particular treatment or service. There is also a concern that a reliance on EBM in health policy will occur at the expense of widely shared social values like equity and solidarity. Moreover, there is a concern that when economic considerations and rational procedures become more influential, various 'outside' groups third parties like insurance companies and policy makers will get a stronger influence on medical practice which may lead to a change in the patient-provider relationship. The authors conclude that social values and patient preference should be explicitly addressed when health policy making is based on economic and other scientific evidence.