Family Centeredness as Resource and Complication in Outpatient Care with Weak Adherence, Using Adolescent Diabetes Care as a Case in Point

This case study illustrates how family members can assist in the care of teenagers with diabetes but that there are also serious risks actualized by such involvement. In particular, it highlights ethical complications that arise when the role of a family member is changed from ‘parent’ to ‘care provider’. The ‘counseling, self-care, adherence’ (CSA) approach offers a look at the role that family can play to improve these types of care.

Negotiating Responsibilities

In this chapter a moral case is made for family care. Two arguments are put forward in defense of this position: first, there is a moral familial responsibility and second, in taking care of a family member, a certain social good is derived that cannot be obtained otherwise. Family can be understood as a caring practice in which special responsibilities are distributed and negotiated. While family relationships count, the history of that relationship and the particulars of the situation also count in determining the moral weight of responsibilities that we have toward each other. If and how we have a particular responsibility toward a family member depends on the moral shape of the situation. Political and social considerations, such as considerations of justice and equity, are also part of this moral shape. The practice of assigning responsibilities is only intelligible against the background of existing practices and the normative expectations arising from them—practices that themselves need to be evaluated. In sum, family care can be seen as a contested practice in which responsibilities to care are negotiated.

Recognizing Family

This chapter seeks to explore some of the complexities involved in recognizing family and draws from a range of work interrogating what is meant by the term. It does so to support the bioethical concern with the importance of relationships to selfhood, of which family is a key form, while also attesting to the politics and risks of such a move. The overall argument is that we need to take care around the recognition dynamics involved in advocating that particular kinds of relationships are important to acknowledge in healthcare. This argument is worked through by exploring two important terms in the debates on family, vulnerability and value, and by layering a sociological account of both into their role in validating a relational/family approach to selfhood and healthcare ethics.

Lesbian Parents’ Search for the “Right Way” to Disclose Donor Conception to Their Children

This case provides an illustration of the importance of drawing relationality into healthcare. It will do so by exemplifying how a bioethics approach that merely protects the rights and interests of individuals is inapt as it comes to capturing the full picture of how decisions— in this case related to reproduction and reproductive medical treatment— are made within families. This case describes lesbian family initiators’ experiences of constructing and narrating their family story around the conception of their children.

Justice, Intimacy, and Autonomy

The aim of this chapter is both (1) to provide an overview of the tensions among various specifications of justice and practices characteristic of families and (2) to explore in greater detail the sites where those tensions erupt into conspicuous problems. The overall goal is to get a firmer grasp on how justice bears on both relationships within families and relationships between families and what is clearly a significant social institution, healthcare. We consider how distributive, contributive, restorative, epistemic, and recognitional justice operate in families, and how these concepts are complicated by the patterns of intimacy that characterize many families.

Annie’s Problem

This case study illustrates nondirected, paired, or pooled organ donation schemes. Paired donation schemes have been established relatively recently in a number of countries, including the US and Korea. Pooled donation can include pairs and single altruistic donors, in a chain of interventions. On the face of it, the schemes are promising solutions (or at least partial solutions) to the sociomedical problem of donor scarcity, but do involve ethical issues.

Family Caregiving as a Problematic Category

This is a composite case description developed with health and social care workers grappling with Singapore’s growing chronic disease burden. The case focuses on (a) a typical household with a typical housing arrangement in Singapore, the HDB flat; (b) a care plan consistent with healthcare staffing policies for an aging population, which relies heavily on foreign domestic workers to support frail older people with dependency for activities of daily living at home when family caregivers have left home or are in the workforce; (c) a common age-related chronic condition and its particular care requirements; and (d) care at home that typifies “aging in place” in accordance with healthcare planning policy.

Why Families Matter

Families are valuable for many reasons, but here the focus is on two: their function of creating and maintaining the identities of those within them, and their function of caring. These give rise to an ethos that is common in structures of intimacy but not shared by healthcare providers. The tension between the two systems of ethics creates problems unless healthcare providers understand the difference.

Healthcare Decisions

The aim of this chapter is to outline how different relational aspects of families may ground obligations on the part of healthcare professionals toward patients and their families in the decision-making process. The exploration starts from the core idea within person-centered care of having patients’ general life situation, experiences, wants, and values to be a substantial topic of concern in a process of shared decision making. If relational decision-making paradigms are to be minimally functional, healthcare professionals’ stances need to involve complex schemes of including people closely related to patients, who will have to be recognized as legitimate stakeholders and partners in, as well as resources for, clinical care.

What Counts as a Family—And Who Is to Decide?

This case study seeks to explore some of the complexities involved in a child’s and later a young woman’s efforts to be recognized by the adult world as a human being in deep trouble. It originates from an interview with Mary, a twenty-three-year-old woman who participated in a study of social network responses to young people with health problems. Since her family was the locus of her troubles, she had tried to get recognition from adults in a number of ways. Her narrative brings to the fore some essential questions for a relational bioethical approach to healthcare, such as: What counts as a family—and who is to decide? What kind of ethical dilemmas will personnel in a family-oriented healthcare system have to face if they meet children who introduce them to family forms that are not self-evident?