Food Labels, Autonomy and the Right (Not) to Know

Food labelling has been overlooked in the emerging body of literature concerning the normative dimensions of food and drink policies. In this paper, I argue that arguments normally advanced in bioethics and medical ethics regarding the “right to know” and the “right not to know” can provide useful normative guidelines for critically assessing existing and proposed food labelling regimes. More specifically, I claim that food labelling ought to respect the legitimate interests and the autonomy of both consumers who seek knowledge about their food in order to make informed dietary choices and consumers who prefer to remain ignorant about the contents and effects of their food in order to avoid the emotional and psychological harm, or more simply the loss of enjoyment, which may result from receiving that information.

Building capacity in palliative care for personal support workers in long-term care through experiential learning

Background

Providing palliative care in long-term care (LTC) homes is an area of growing importance. As a result, attention is being given to exploring effective palliative care learning strategies for personal support workers (PSWs) who provide the most hands-on care to LTC residents.

The purpose of this intervention was to explore hospice visits as an experiential learning strategy to increase the capacity of PSWs in palliative care, specifically related to their new learning, and how they anticipated this experience changed their practices in LTC.

This study utilised a qualitative descriptive design.

Eleven PSWs from four Ontario LTC homes were sent to their local hospice to shadow staff for one to two days. After the visit, PSWs completed a questionnaire with open-ended questions based on critical reflection. Data were analysed using thematic content analysis.

PSWs commented on the extent of resident-focused care at the hospice and how palliative care interventions were tailored to meet the needs of residents. PSWs were surprised with the lack of routine at the hospice but felt that hospice staff prioritised their time effectively in order to meet family and client care needs. Some PSWs were pleased to see how well integrated the PSW role is on the community hospice team without any hierarchical relationships. Finally, PSWs felt that other LTC staff would benefit from palliative care education and becoming more comfortable with talking about death and dying with other staff, residents and family members.

This study highlighted the benefits of PSWs attending a hospice as an experiential learning strategy. Future work is needed to evaluate this strategy using more rigorous designs as a way to build capacity within PSWs to provide optimal palliative care for LTC residents and their family members.

PSWs need to be recognised as important members within the interdisciplinary team. PSWs who shadow staff at hospices view this experience as a positive strategy to meet their learning needs related to palliative care.

ECJ Fundamental Rights Jurisprudence between Member States' Prerogatives and Citizens' Autonomy

This chapter provides an analysis of the European Court of Justice's Fundamental Rights Jurisprudence, focused on the potential of Member States to maintain any positive regulatory role in supporting citizens' autonomy on the one hand, and on the impact of the Court's case law on citizens' opportunities to actually enjoy human rights within societies (substantive autonomy). It first sketches the notion of autonomy which is proposed as base of fundamental rights protection and promotion within a social reality characterized by not democratically legitimated dominance based on wealth and economic power. It proceeds to contextualize ECJ case law on fundamental rights. This section starts with a quantitative appetizer, which will formalize some assumptions and test them on a total of 150 cases before the European judiciary. The paper then offers a more conceptual recount around fundamental rights to equality and non-discrimination on the one hand and around fundamental rights of workers to actively shape employment and labor relations on the other hand. In conclusion some suggestions are made of how ECJ fundamental rights doctrine could develop more positively in order to moderate diverging interests of different parts of the citizenry in protecting fundamental rights.

Children, Adults, Autonomy and Well-Being

I explore the implications of a view – that children and adults enjoy a markedly different moral and political status, wherein the latter can and should be permitted to make choices as to how they lead their lives, whereas the former should not be permitted to make such choices – for how we think about the relationship between autonomy and welfare, and in particular, in consequence, for how we evaluate paternalism. I discuss the problem of drawing a line and the ‘threshold problem’, and consider how one might, as the UNCRC requires, give a weighted role to the views of the child on matters affecting its own interests.

Up close and personal: A qualitative study exploring the lived experience of older carers. Mental Health and Learning Disabilities Research. 8 (1). Pp.15-29.

This study explored the experiences of informal carers who were aged 65 years and over. It has been estimated that 15 per cent of those aged 65 or over provide some form of informal care in England. Despite a growing literature on the involvement of older people in research, there is a paucity of literature on the involvement of older carers. In this study, older carers were identified via a General Practice (GP) register in one urban medical practice. Data was collected through a series of focus groups, which were transcribed and analysed using
thematic analysis. Every carer aged 55 or over and registered with the medical practice was invited to take part in the study. Four female carers and one male carer took part in the study (age range 65-83). Themes that emerged during data analysis included, 1) managing things in an emergency, 2) feeling valued because they took part in the research and 3) the day-to-day reality of living with social exclusion. GP registers provide a valuable tool for identifying older
carers who may otherwise be difficult to engage in research. However, persuading GPs to engage with qualitative research may be a challenge.

‘All illness is personal to that individual’: a qualitative study of patients’ perspectives on treatment adherence in bronchiectasis

Background: Adherence to treatment is low in bronchiectasis and is associated with poorer health outcomes. Factors affecting adherence decisions have not been explored in patients with bronchiectasis. 

Objective: We aimed to explore patients' perspectives on adherence, factors affecting adherence decision making and to develop a conceptual model explaining this decision-making process in adults with bronchiectasis. 

Methods: Adults with bronchiectasis participated in one-to-one semi-structured interviews. Interviews were audio-recorded, transcribed verbatim and analysed independently by two researchers using thematic analysis. Data from core themes were extracted, categorized into factors affecting adherence decision making and used to develop the conceptual model. 

Results: Participants' beliefs about treatment, the practical aspects of managing treatment, their trust in health-care professionals and acceptance of disease and treatment were important aspects of treatment adherence. The conceptual model demonstrated that adherence decisions were influenced by participants' individual balance of barriers and motivating factors (treatment-related, disease-related, health-care-related, personal and social factors). 

Conclusion: Adherence decision-making in bronchiectasis is complex, but there is the potential to enhance adherence by understanding patients' specific barriers and motivators to adherence and using this to tailor adherence strategies to individual patients and treatments. © 2014 John Wiley & Sons Ltd.

Labour Law as Human Rights Law: A Critique of the Use of ‘Dignity’ by Freedland and Kountouris

In their recent book, The Legal Construction of Personal Work Relations, Mark Freedland and Nicola Kountouris present an ambitious study of the personal scope of (what they would not want to call) ‘employment’ law. The book does this within a broader argument that calls for the reconceptualization of labour law as a whole, and it is this broader argument on which I shall focus in this chapter. Their aim, in urging us to see labour law through the lens of ‘dignity’ is to bring labour law and human rights law into closer alignment than has sometimes been the case in the past. Increasingly, dignity is seen as providing a, sometimes the, foundation of human rights law, particularly in Europe. I shall suggest that whilst the aim of constructing a new set of foundations for labour law is a worthy and increasingly urgent task, the concepts on which Freedland and Kountouris seek to build their project pose significant difficulties. In particular, their espousal of ‘dignity’ presents problems that must be addressed if their reconceptualization is not to prove a blind alley.

The Intersection of Religious Autonomy and Religious Symbols: Setting the Stage

Two sets of issues in the area of law and religion have generated a large share of attention and controversy across a wide number of countries and jurisdictions in recent years. The first set of issues relates to the autonomy of churches and other religiously affiliated entities such as schools and social service organisations in their hiring and personnel decisions, involving the question of how far, if at all, such entities should be free from the influence and oversight of the state. The second set of issues involves the presence of religious symbols in the public sphere, such as in state schools or on public lands, involving the question of how far the state should be free from the influence of religion. Although these issues – freedom of religion from the state, and freedom of the state from religion – could be viewed as opposite sides of the same coin, they are almost always treated as separate lines of inquiry, and the implications of each for the other have not been the subject of much scrutiny. In this Introduction, we consider whether insights might be drawn from thinking about these issues both from a comparative law perspective and also from considering these two lines of cases together.