It is well known that close relatives of terminally ill patients endure great emotional stress. Many factors, such as existential concerns, contribute to the distress of these relatives. In this study, interviews were conducted to explore experiences concerning life restrictions, emotional distress, and limited support, in a group of close relatives of patients with amyotrophic lateral sclerosis (ALS). The purpose was to identify, illuminate and clarify ethical problems related to these experiences. The results indicate that close relatives of patients with (...) ALS need someone to talk to, as well as more information about the disease and its process. Furthermore, the study illustrates how ethical problems are related to choices and conflicts, and that a process including shared decision making is often an ideal when trying to find a solution to ethical problems. (shrink)

The aim of this article is to analyse and discuss the ethically problematic conflict raised by patients with stroke who refuse nutritional treatment. In analysing this conflict, the focus is on four different aspects: (1) Is nutritional treatment biologically necessary? (2) If necessary, is the reason for refusal a functional disability, lack of appetite or motivation, misunderstanding of the situation or a genuine conflict of values? (3) If the latter, what values are involved in the conflict? (4) How should we (...) deal with the different kinds of refusal of nutritional treatment? We argue that patients' autonomy should be respected as far as possible, while also considering that those who have suffered a stroke might re-evaluate their life as a result of a beneficial prognosis. However, if patients persist with their refusal, health care professionals should force nutritional treatment only when it is clear that the patients will re-evaluate their future life. (shrink)

Registered nurses (RNs) employed in an urban medical center in the USA identified moral distress as a practice concern. This study describes RNs' moral distress and the frequency of morally distressing events. Data were collected using the Moral Distress Scale and an open-ended questionnaire. The instruments were distributed to direct-care-providing RNs; 100 responses were returned. Morally distressing events included: working with staffing levels perceived as `unsafe', following families' wishes for patient care even though the nurse disagreed with the plan, and (...) continuing life support for patients owing to family wishes despite patients' poor prognoses. One high frequency distressing event was carrying out orders for unnecessary tests and treatments. Qualitative data analysis revealed that the nurses sought support and information from nurse managers, chaplaincy services and colleagues. The RNs requested further information on biomedical ethics, suggested ethics rounds, and requested a non-punitive environment surrounding the initiation of ethics committee consultations. (shrink)

Background: Informed consent is regarded as a contract between autonomous and equal parties and requires the elements of information disclosure, understanding, voluntariness and consent. The validity of informed consent for critically ill patients has been questioned. Little is known about how these patients experience the process of consent.Objective: The aim of this study was to explore critically ill patients’ experience with the principle of informed consent in a clinical trial and their ability to give valid informed consent.Design: 11 stroke patients (...) who had been informed about thrombolytic treatment and had been through the process of deciding whether or not to participate in a thrombolysis trial went through repeated qualitative semistructured interviews.Results: None of the patients had any clear understanding of the purpose of the trial. Neither did they understand the principles of randomisation and voluntariness. Reasons for giving or not giving consent were trust, conceptions of benefits and risks and altruism. Several patients found it immoral to involve patients in the consent procedure and argued that this was the doctors’ responsibility. Others argued that it is a duty to question patients and perceived it as a sign of being treated with respect and dignity. A majority of the patients found the consent process vague and ambiguous.Conclusions: The results indicate that the principle of informed consent from critically ill patients cannot be seen as a contract between equal and autonomous parties. Further studies are needed to explore critically ill patients’ experiences with the process of informed consent. (shrink)

High technology and nursing: ethical dilemmas nurses and physicians face on high‐technology units in Norway Results from two studies of ethical dilemmas nurses and doctors experience on two high‐technology units are compared and discussed. The qualitative comparative methodology of grounded theory was used to generate theoretical frameworks grounded in the empirical realities of the units. The ethical dilemmas they faced were related to: treating the one vs. the common good; end of life questions; and resource allocations with inadequate staffing. Similarities (...) were related to intensity and urgency of nursing care and patient treatment, clear nursing ideologies based on treating humans within a framework of hope, embracing technology and scarce resources. Differences between the two study units were patient diagnosis, hierarchical structure on one unit while one had a vertical structure and decision‐making processes, and finally how nursing knowledge and autonomy were used. The two studies demonstrated that clinical, ethical and administrative interactions and decisions are highly compounded, stressful and intertwined. (shrink)

This study examined why intensive care unit (ICU) nurses experience difficulties in respecting the wishes of patients in end-of-life care in Japan. A questionnaire survey was conducted with ICU nurses working in Japanese university hospitals. The content of their narratives was analyzed concerning the reasons why the nurses believed that patients' wishes were not respected. The most commonly stated reason was that patients' wishes were impossible to realize, followed by the fact that decision making was performed by others, regardless of (...) whether the patients' wishes were known, if the death was sudden, and time constraints. Many nurses wanted to respect the wishes of dying patients, but they questioned how patients die in ICUs and were therefore faced with ethical dilemmas. However, at the same time, many of the nurses realized that respecting patients' wishes about end-of-life care in an ICU would be difficult and that being unable to respect these wishes would often be unavoidable. The results thus suggest that there has been insufficient discussion about respecting the wishes of patients undergoing intensive care. (shrink)

Patients in nursing homes sometimes give accounts of episodes in which they feel their autonomy and/or self-respect are violated as a result of the care they receive from nursing staff. In these ethically difficult care situations nurses use strategies such as negotiation, explanation and, in some cases, restraint. This study investigates how nurses apply these strategies to resolve ethical dilemmas in such a way that patients experience respect rather than violation. Critical issues that will be discussed include the definition of (...) ethically difficult care situations in nursing homes and the identification of strategies for resolving such situations. Examples of the use of three strategies are presented. The use of negotiation, restraint and explanation are discussed in order to ensure respect for patients’ autonomy and thus to optimize health care outcomes. (shrink)

Although the need to theorize ethics within the complexities of nursing practice has been identified within the nursing literature, to date the link between ethics epistemology and specific nursing actions has received limited attention. In particular, little exploration has been carried out to examine how nurses ‘know’ what is ethical and the knowledge they draw upon to inform their nursing actions within the complexities of their everyday practice. This study describes a participatory inquiry project that focused on developing and articulating (...) an epistemology of ethics while in the midst of everyday nursing work. Epistemological and methodological insights are discussed in light of the challenges nurses face in contemporary healthcare contexts. (shrink)

Ethical problems regularly arise during daily care in nursing homes. These include violation of patients' right to autonomy and to be treated with respect. The aim of this study was to investigate how caregivers emphasize daily dialogue and mutual reflection to reach moral alternatives in daily care. The data were collected by participant observation and interviews with seven caregivers in a Norwegian nursing home. A number of ethical problems linked to 10 patients were disclosed. Moral problems were revealed as the (...) caregivers acted in ways that they knew were against patients' interest. We used a theoretical interpretation according to Habermas' discourse ethics on the importance of dialogue when deciding moral courses of action for patients. This theory has four basic requirements: communicative competence, equality, self-determination, and openness about motives. (shrink)