People in extraordinary situations are vulnerable. As research participants, they are additionally threatened by abuse or exploitation and the possibility of harm through research. To protect people against these threats, informed consent as an instrument of self-determination has been introduced. Self-determination requires autonomous persons, who voluntarily make decisions based on their values and morals. However, in nursing research, this requirement cannot always be met. Advanced age, chronic illness, co-morbidity and frailty are reasons for dependencies. These in turn lead to limited (...) abilities or opportunities for decision-making and self-determination. Exclusion of vulnerable people from research projects would disadvantage them by not covering their needs, which would violate the ethical principles of justice and beneficence. Commonly, vulnerability is attributed to social groups. The consequence for individuals, attributed as belonging to such a vulnerable group, is that the principles of respect for autonomy, justice and beneficence are subordinated to the principle of non-maleficence, understood as avoiding the risk to cause more harm than good. In addition, group-specific attribution could lead to stigmatizing because labelling a person as deviation from a norm violates integrity. For clinical nursing research, the question arises how the protection of vulnerable people could be granted without compromising ethical principles. The concept of relational ethics provides a possible approach. It defines vulnerability as the relation between a person’s health status and the extent to which this person is dependent on the researcher and the research context. Vulnerability is not attributed solely to a person but to a situation, meaning the person is viewed in context. By combining vulnerability as a context-related and situational concept with existing approaches of informed consent, the different ethical principles can be balanced and preserved at every step of the research process. (shrink)

-/- Background: Nurses who provide aggressive care often experience the ethical challenge of needing to preserve the hope of seriously ill patients and their families without providing false hope. -/- Research objectives: The purpose of this inquiry was to explore nurses’ moral competence related to fostering hope in patients and their families within the context of aggressive technological care. A secondary purpose was to understand how this competence is shaped by the social–moral space of nurses’ work in order to capture (...) how competencies may reflect an adaptation to a less than ideal work environment. -/- Research design: A critical qualitative approach was used. -/- Participants: Fifteen graduate nursing students from various practice areas participated. -/- Ethical considerations: After receiving ethics approval from the university, signed informed consent was obtained from participants before they were interviewed. -/- Findings: One overarching theme ‘Mediating the tension between providing false hope and destroying hope within biomedicine’ along with three subthemes, including ‘Reimagining hopeful possibilities’, ‘Exercising caution within the social–moral space of nursing’ and ‘Maintaining nurses’ own hope’, was identified, which represents specific aspects of this moral competency. -/- Discussion: This competency represents a complex, nuanced and multi-layered set of skills in which nurses must be well attuned to the needs and emotions of their patients and families, have the foresight to imagine possible future hopes, be able to acknowledge death, have advanced interpersonal skills, maintain their own hope and ideally have the capacity to challenge those around them when the provision of aggressive care is a form of providing false hope. -/- Conclusion: The articulation of moral competencies may support the development of nursing ethics curricula to prepare future nurses in a way that is sensitive to the characteristics of actual practice settings. (shrink)

This article seeks an improved understanding of nurse autonomy by looking at nursing through the lens of what recent feminist scholars have called ‘relational’ autonomy. A relational understanding of autonomy means a shift away from older views focused on individuals achieving independence, towards a view that seeks meaningful self-direction within a context of interdependency. The main claim made here is that nurse autonomy is, indeed, relational. The article begins with an explanation of the notion of relational autonomy. It then explains (...) both the collective and the individual application of the term ‘professional autonomy’. Finally, it argues that both senses of professional autonomy are best understood as relational, and suggests some implications of this conclusion. (shrink)

The justification for advance directives is grounded in the notion that they extend patient autonomy into future states of incompetency through patient participation in decision making about end-of-life care. Four objections challenge the necessity and sufficiency of individual autonomy, perceived to be a defining feature of liberal philosophical theory, as a basis of advance care planning. These objections are that the liberal concept of autonomy (i) implies a misconception of the individual self, (ii) entails the denial of values of social (...) justice, (iii) does not account for justifiable acts of paternalism, and (iv) does not account for the importance of personal relationships in the advance care planning process. The last objection is especially pertinent in light of recent empirical research highlighting the importance of personal relationships in advance care planning. This article examines these four objections to autonomy, and the liberal theoretical framework with which it is associated, in order to re-evaluate the philosophical basis of advance care planning. We argue that liberal autonomy (i) is not a misconceived concept as critics assume, (ii) does not entail the denial of values of social justice, (iii) can account for justifiable acts of paternalism, though it (iv) is not the best account of the value of personal relationships that arise in advance care planning. In conclusion, we suggest that liberalism is a necessary component of a theoretical framework for advance care planning but that it needs to be supplemented with theories that focus explicitly on the significance of personal relationships. (shrink)

The received view in medical contexts is that informed consent is both necessary and sufficient for patient autonomy. This paper argues that informed consent is not sufficient for patient autonomy, at least when autonomy is understood as a "relational" concept. Relational conceptions of autonomy, which have become prominent in the contemporary literature, draw on themes in the thought of Charles Taylor. I first identify four themes in Taylor's work that together constitute a picture of human agency corresponding to the notion (...) of agency implicit in relational accounts of autonomy. Drawing on these themes, I sketch two arguments against the position that informed consent secures autonomy. The first is that informed consent is an "opportunity" concept whereas autonomy is an "exercise" concept; the second is that informed consent requires merely weak evaluation and not strong evaluation. On Taylor's analysis of agency, strong evaluation is required for agency and for autonomy. (shrink)

Self-trust is a necessary condition of personal autonomy and self-respect. Self-trust involves a positive sense of the motivations and competence of the trusted person; a willingness to depend on him or her; and an acceptance of vulnerability. It does not preclude trust in others. A person may be rightly said to have too much self-trust; however core self-trust is essential for functioning as an autonomous human being.

ABSTRACT This paper critically examines the liberal model of decision making for the terminally ill and contrasts it with the familial model that can be found in some Asian cultures. The contrast between the two models shows that the liberal model is excessively patient‐centred, and misconceives and marginalises the role of the family in the decision making process. The paper argues that the familial model is correct in conceiving the last journey of one's life as a sharing process rather than (...) a process of exercising one's prior or counterfactual choice, and concludes by suggesting a policy framework for the practice of familialism that can answer the liberal challenge that familialism cannot safeguard the patient from abuse and neglect. (shrink)