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)

The purpose of this study was to illuminate the ethically difficult situations experienced by care providers working in a nursing home. Individual interviews using a narrative approach were conducted. A phenomenological-hermeneutic method developed for researching life experience was applied in the analysis. The findings showed that care providers experience ethical challenges in their everyday work. The informants in this study found the balance between the ideal, autonomy and dignity to be a daily problem. They defined the culture they work in (...) as not supportive. They also thought they were not being seen and heard in situations where they disagree with the basic values of the organization. The results are discussed in terms of Habermas’s understanding of modern society. Care settings for elderly people obviously present ethical challenges, particularly in the case of those suffering from dementia. The care provider participants in this study expressed frustration and feelings of powerlessness. It is possible to understand their experiences in terms of Habermas’s theory of modern society and the concept of the system’s colonization of the life world. (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.

Abstract Studying a concept as complex as moral distress is an ongoing challenge for those engaged in empirical ethics research. Qualitative studies of nurses have illuminated the experience of moral distress and widened the contours of the concept, particularly in the area of root causes. This work has led to the current understanding that moral distress can arise from clinical situations, factors internal to the individual professional, and factors present in unit cultures, the institution, and the larger health care environment. (...) Corley et al. ( 2001 ) was the first to publish a quantitative measure of moral distress, and her scale has been adapted for use by others, including studies of other disciplines (Hamric and Blackhall 2007 ; Schwenzer and Wang 2006 ). Other scholars have proposed variations on Jameton’s core definition (Sporrong et al. 2006 , 2007 ), developing measures for related concepts such as moral sensitivity (Lutzen et al. 2006 ), ethics stress (Raines 2000 ), and stress of conscience (Glasberg et al. 2006 ). The lack of consistency and consensus on the definition of moral distress considerably complicates efforts to study it. Increased attention by researchers in disciplines other than nursing has taken different forms, some problematic. Cultural differences in the role of the nurse and understanding of actions that represent threats to moral integrity also challenge efforts to build a cohesive research-based understanding of the concept. In this paper, research efforts to date are reviewed. The importance of capturing root causes of moral distress in instruments, particularly those at unit and system levels, to allow for interventions to be appropriately targeted is highlighted. In addition, the issue of studying moral distress and interaction over time with moral residue is discussed. Promising recent work is described along with the potential these approaches open for research that can lead to interventions to decrease moral distress. Finally, opportunities for future research and study are identified, and recommendations for moving the research agenda forward are offered. Content Type Journal Article Pages 1-11 DOI 10.1007/s10730-012-9177-x Authors Ann B. Hamric, School of Nursing, Virginia Commonwealth University, P.O. Box 980567, Richmond, VA 23298-0567, USA Journal HEC Forum Online ISSN 1572-8498 Print ISSN 0956-2737. (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)

To investigate the current status of hospital clinical ethics committees (CEC) and how they have evolved in Canada over the past 20 years, this paper presents an overview of the findings from a 2008 survey and compares these findings with two previous Canadian surveys conducted in 1989 and 1984. All Canadian hospitals over 100 beds, of which at least some were acute care, were surveyed to determine the structure of CEC, how they function, the perceived achievements of these committees and (...) opinions about areas with which CEC should be involved. The percentage of hospitals with CEC in our sample was found to be 85% compared with 58% and 18% in 1989 and 1984, respectively. The wide variation in the size of committees and the composition of their membership has continued. Meetings of CEC have become more regularised and formalised over time. CEC continue to be predominately advisory in their nature, and by 2008 there was a shift in the priority of the activities of CEC to meeting ethics education needs and providing counselling and support with less emphasis on advising about policy and procedures. More research is needed on how best to define what the scope of activities of CEC should be in order to meet the needs of hospitals in Canada and elsewhere. More research also is needed on the actual outcomes to patients, families, health professionals and organisations from the work of these committees in order to support the considerable time committee members devote to this endeavour. (shrink)

Research on moral distress has paid limited attention to nurses’ responses and actions. In a survey of nurses’ perceptions of moral distress and ethical climate, 292 nurses answered three open-ended questions about situations that they considered morally distressing. Participants identified a range of situations as morally distressing, including witnessing unnecessary suffering, being forced to provide care that compromised values, and negative judgments about patients. They linked these situations to contextual constraints such as workload and described responses, including feeling incompetent and (...) distancing themselves from patients. Participants described considerable effort to effect change, calling into question the utility of defining moral distress as an “inability to act due to institutional constraints” or a “failure to pursue a right course of action.” Various understandings of moral distress operated, and action was integral to their responses. The findings suggest further conceptual work on moral distress and effort to support system-level change. (shrink)

This study examined the relationship between moral distress intensity, moral distress frequency and the ethical work environment, and explored the relationship of demographic characteristics to moral distress intensity and frequency. A group of 106 nurses from two large medical centers reported moderate levels of moral distress intensity, low levels of moral distress frequency, and a moderately positive ethical work environment. Moral distress intensity and ethical work environment were correlated with moral distress frequency. Age was negatively correlated with moral distress intensity, (...) whereas being African American was related to higher levels of moral distress intensity. The ethical work environment predicted moral distress intensity. These results reveal a difference between moral distress intensity and frequency and the importance of the environment to moral distress intensity. (shrink)

Little is known about the consequences of moral distress. The purpose of this study was to identify clinical situations that caused nurses to experience moral distress, to understand the consequences of those situations, and to determine whether nurses would change their practice based on their experiences. The investigation used a descriptive approach. Open-ended surveys were distributed to a convenience sample of 204 critical care nurses employed at a university medical center. The analysis of participants’ responses used an inductive approach and (...) a thematic analysis. Each line of the data was reviewed and coded, and the codes were collapsed into themes. Methodological rigor was established. Forty-nine nurses responded to the survey. The majority of nurses had experienced moral distress, and the majority of situations that caused nurses to experience moral distress were related to end of life. The nurses described negative consequences for themselves, patients, and families. (shrink)

This article analyses the general ethical milieu in a nursing home for elderly residents and provides a decision-making model for analysing the ethical situations that arise. It considers what it means for the residents to live together and for the staff to be in ethically problematic situations when caring for residents. An interpretative phenomenological approach and Sandman’s ethical model proved useful for this purpose. Systematic observations were carried out and interpretation of the general ethical milieu was summarized as ‘being in (...) the same world without meeting’. Two themes and four subthemes emerged from the analysis. Three different ethical problems were analysed. The outcome of using the decision-making model highlighted the discrepancy between the solutions used and well-founded solutions to these problems. An important conclusion that emerged from this study was the need for a structured tool for reflection. (shrink)

This study examined the ethical issues experienced by nurses working in a small group of elderly persons’ care settings in the UK, using a survey questionnaire previously used in other countries for examining the cultural aspects of ethical issues. However ‘culture’ relates not only to ethnicity but also the organizational culture in which care is delivered. Nurses working in elderly persons’ care settings described a range of issues faced when caring for elderly terminally ill people, which illustrated the different needs (...) of patients, relatives, professionals and society. These issues related to the unique needs of elderly people (such as dementia sufferers) and could have an impact on patients’ quality of death. (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)

This study examined the ethical issues experienced by nurses working in a small group of elderly persons’ care settings in the UK, using a survey questionnaire previously used in other countries for examining the cultural aspects of ethical issues. However ‘culture’ relates not only to ethnicity but also the organizational culture in which care is delivered. Nurses working in elderly persons’ care settings described a range of issues faced when caring for elderly terminally ill people, which illustrated the different needs (...) of patients, relatives, professionals and society. These issues related to the unique needs of elderly people and could have an impact on patients’ quality of death. (shrink)

Bishop is a professor of nursing; Scudder is a professor of philosophy.

climate are both linked to an organization's ability to retain healthcare professionals and increase their level of job satisfaction, leaders have a corollary responsibility to address moral distress. We recommend that leaders should provide access to ethics education and resources, offer interventions such as ethics debriefings, establish ethics committees, and/or hire a bioethicist to develop ethics capacity and to assist with addressing healthcare provider moral distress....

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)

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)

Moral distress is a concept used to date in clinical literature to describe the experience of staff in circumstances in which they are prevented from delivering the kind of bedside care they believe is expected of them, professionally and ethically. Our research objective was to determine if this concept has relevance in terms of key health care managerial functions, such as priority setting and resource allocation. We conducted interviews and focus groups with mid- and senior-level managers in two British Columbia (...) (Canada) health authorities. Transcripts were analyzed qualitatively using constant comparison to identify key themes related to moral distress. Both mid- and senior-level managers appear to experience moral distress, with both similarities and differences in how their experiences manifest. Several examples of this concept were identified including the obligation to communicate or ‘sell’ organizational decisions or policies with which a manager personally may disagree and situations where scarce resources compel managers to place staff in situations where they meet with predictable and potentially avoidable risks. Given that moral distress appears to be a relevant issue for at least some health care managers, further research is warranted into its exact nature, prevalence, and possible organizational and personal responses. (shrink)

The predominant function of Australian clinical ethics committees (CECs) is policy formation. Some committees have an educational role. Few committees play any direct role in advising on ethics in the management of individual patients and this occurs only in exceptional circumstances. There is a tendency to exaggerate both the number and function of committees. It is suggested that studies of ethics committees, based on questionnaire surveys, should be interpreted cautiously. An examination of ethical issues indicates that there is a role (...) for a critical analysis of power relations in Australian hospitals that is not fulfilled by CECs. (shrink)