The aim of this study was to describe nurses' conceptions of decision making with regard to life-sustaining treatment for dialysis patients. Semistructured interviews were conducted with 13 nurses caring for such patients at three hospitals. The interview material was subjected to qualitative content analysis. The nurses saw decision making as being characterized by uncertainty and by lack of communication and collaboration among all concerned. They described different ways of handling decision making, as well as insufficiency of physician—nurse collaboration, lack of (...) confidence in physicians, hindrances to patient participation, and ambivalence about the role of patients' next of kin. Future research should test models for facilitating communication and decision making so that decisions will emerge from collaboration of all concerned. Nurses' role in decision making also needs to be discussed. (shrink)

As professionals, nurses are engaged in a moral endeavour, and thus confront many challenges in making the right decision and taking the right action. When nurses cannot do what they think is right, they experience moral distress that leaves a moral residue. This article proposes a theory of moral distress and a research agenda to develop a better understanding of moral distress, how to prevent it, and, when it cannot be prevented, how to manage it.

Background: Medicine is full of value conflicts. Limited resources and legal regulations may place doctors in difficult ethical dilemmas and cause moral distress. Research on moral distress has so far been mainly studied in nurses. Objective: To describe whether Norwegian doctors experience stress related to ethical dilemmas and lack of resources, and to explore whether the doctors feel that they have good strategies for the resolution of ethical dilemmas. Design: Postal survey of a representative sample of 1497 Norwegian doctors in (...) 2004, presenting statements about different ethical dilemmas, values and goals at their workplace. Results: The response rate was 67%. 57% admitted that it is difficult to criticise a colleague for professional misconduct and 51% for ethical misconduct. 51% described sometimes having to act against own conscience as distressing. 66% of the doctors experienced distress related to long waiting lists for treatment and to impaired patient care due to time constraints. 55% reported that time spent on administration and documentation is distressing. Female doctors experienced more stress that their male colleagues. 44% reported that their workplace lacked strategies for dealing with ethical dilemmas. Conclusion: Lack of resources creates moral dilemmas for physicians. Moral distress varies with specialty and gender. Lack of strategies to solve ethical dilemmas and low tolerance for conflict and critique from colleagues may obstruct important and necessary ethical dialogues and lead to suboptimal solutions of difficult ethical problems. (shrink)

Background: The increasing number of elderly people in nursing homes with failing competence to give consent represents a great challenge to healthcare staff’s protection of patient autonomy in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation. The lack of national guidelines and internal routines can threaten the protection of patient autonomy. Objectives: To place focus on protecting patient autonomy in the decision-making process by studying how relatives experience their role as substitute decision-makers. Design: A qualitative descriptive design with analysis (...) of the contents of transcribed in-depth interviews with relatives. Participants: Fifteen relatives of 20 patients in 10 nursing homes in Norway. Results and Interpretations: The main findings reveal deficient procedures for including relatives in decision-making processes. Relatives have poor knowledge about the end of life, and there is little discussion about their role as substitute decision-makers for patients who are not competent to give consent. Few relatives understand the concept of patient autonomy. In Norway the treating physician is responsible for patient treatment. When relatives are included in discussions on treatment, they perceive themselves as responsible for the decision, which is a burden for them afterwards. This qualitative study describes relatives’ experiences, thus providing important information on the improvement potential with the main objective of safeguarding patient autonomy and caring for relatives. Conclusion: The study reveals failing procedures and thus a great potential for improvement. Both ethical and legal aspects must be addressed when considering patient autonomy. (shrink)

Background Making the right decisions, while simultaneously showing respect for patient autonomy, represents a great challenge to nursing home staff in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation to dying patents in end-of-life. Objectives To study how physicians and nurses protect nursing home patients' autonomy in end-of-life decisions, and how they justify their practice. Design A qualitative descriptive design with analysis of the content of transcribed in-depth interviews with physicians and nurses. Participants Nine physicians and ten nurses in (...) 10 nursing homes in Norway. Results and interpretations Assessment of the patient's competence to consent to treatment is almost absent. The physicians build their practice on the principles of beneficence and nonmaleficence. Nurses tend to trust the patients' rejection of life support, even when the patients have difficulty speaking or suffer from dementia. Relatives were, according to the health personnel, included in decision-making processes to a very limited extent. However, futile life support is sometimes provided contrary to the physicians' judgement of what constitutes the patient's best interest on occasions when they are pressurised by next of kin. Conclusions The study reveals a need to improve decision-making routines according to ethical ideals and legislation. Conflicts between relatives and healthcare professionals in the decision-making process deflect the focus from searching for the best possible treatment for the terminal patient. Further discussion is required as to whether the concept of autonomy is applicable in situations in which the patient is impaired and dying. (shrink)

What is the status of empirical contributions to bioethics, especially to clinical bioethics? Where is the empirical approach discussed in bioethics related to the ongoing debate about principlism versus casuistry? Can we consider an integrative model of research in medical ethics and which empirical methodology could then be valuable, the quantitative or the qualitative? These issues will be addressed in the first, theoretical part of the paper. The concept of the “embedded researcher” presented in this article was stimulated by the (...) two questions, (1) how can we safeguard that our research will yield valid and meaningful results to practice? and (2), how can we convince clinical colleagues that medical ethics offers relevant contributions to the analysis and solution of problems? One tentative answer has been our effort to elaborate a coherent methodological research approach in the field of end-of-life issues integrating qualitative and quantitative as well as casuistic methodologies. This development is characterized in the second part describing the ECOPE Study (short title)“Ethical Conditions Of Passive Euthanasia.” The achievements and limitations of the suggested approach of the “embedded researcher” are discussed referring to 3 examples of our joint studies about ethical issues concerning(1) critical decision-making in neonatology(2) limitation of treatment in intensive care(3) problems with doctor-patient conversation at the end of life in oncologyConclusions from our studies are put to discussion in the final part of the paper about how to further develop research in the field of end-of-life care and, maybe,clinical bioethics as a whole. (shrink)