Background: In the last two decades, nursing authors have published ethical analyses of palliative sedation—an end-of-life care practice that also receives significant attention in the broader medical and bioethics literature. This nursing literature is important, because it contributes to disciplinary understandings about nursing values and responsibilities in end-of-life care. Research aim: The purpose of this project is to review existing nursing ethics literature about palliative sedation, and to analyze how nurses’ moral identities are portrayed within this literature. Research design: We (...) reviewed discussion papers, written by nurses about the ethics of palliative sedation, which were cited in MEDLINE, CINAHL, Nursing and Allied Health, or Philosopher’s Index (search date March 2018). Twenty-one papers met selection criteria. We performed a comprehensive review and analysis (using the Qualitative Analysis Guide of Leuven), of the values, responsibilities, and relationships reflected in authors’ portrayal of the nursing role. Findings: Two different tones are apparent in the extant nursing ethics literature. One is educational, while the other is critically reflective. Irrespective of tone, all authors agree on the alleviation of suffering as a fundamental nursing responsibility. However, they differ in their analysis of this responsibility in relation to other values in end-of-life care, including those that depend on consciousness. Finally, authors emphasize the importance of subjective and experience-based understandings of palliative sedation, which they argue as depending on nurses’ proximity to patients and families in end-of-life care. Discussion and conclusion: Based on our findings, we develop three recommendations for future writing by nurses about palliative sedation. These relate to the responsibility of recognizing how consciousness might matter in (some) peoples’ moral experiences of death and dying, to the importance of moral reflectiveness in nursing practice, and to the value of a relational approach in conceptualizing the nursing ethics of palliative sedation. (shrink)

Background:Advance care planning gives patients and their family members the possibility to consider and make decisions regarding future care and medical procedures.Aim:To explore the view of people in the early stage of dementia on planning for future care.Research design:The study is a qualitative interview study with a semistructured interview guide. The data were analyzed according to the Qualitative Analysis Guide of Leuven.Participants and research context:Dementia nurses assisted in the recruiting of people with dementia for participation in the study. Study information (...) was mailed to 95 people with early stage dementia. Ten people with dementia and eight caregiver spouses participated in the study.Ethical considerations:People with dementia belong to a vulnerable patient group, and care was taken in the areas of informed consent and accessible information.Findings:The views of people with dementia are characterized by a complex storyline involving tensions and movement within the themes of wants, beliefs, and levels of insight. Participants wanted to think about the future but also wanted to live in the here and now.Discussion:High demands are placed on the advance care planning process for people with dementia and their family caregivers. A dignity-enhancing approach in dementia care emphasizes the dignity of and respect for this vulnerable and care-dependent patient group.Conclusion:The process of advance care planning in dementia care needs to go beyond person-centered care to a relationship-centered process. The illness trajectory and the impact on autonomy need to be taken into consideration. (shrink)

Background Stroke causes ethically challenging changes in the lives of individuals with stroke (IwS). However, it is unclear whether the changes are stable or dynamic. In this study, a novel concept ‘ethical pathway’ is used to describe the potential changes in the perceived realisation of IwS’ values in temporal passage post-stroke. Ethical pathway includes three central values of nursing: dignity, privacy and autonomy. Aim of the study was to analyse the perceived ethical pathway of IwS over a non-limited post-stroke period, (...) with the purpose to understand the existence of the IwS’ ethical pathway in theoretical level. Design A descriptive and correlational design. Methods The volunteer participants were recruited via the Finnish Brain Association. Data were collected with questions of background variables and the Ethical Pathway of Individuals with Stroke (EPIS) instrument and analysed statistically. The Ethics Committee of the University approved the study and permission for data collection was obtained from the association. Results Sixty-one IwS participated in the study. The ethical pathway varied during the post-stroke time. Of the values, dignity and privacy were realised lower with longer post-stroke time. The life situational factors were associated with the realisation of the values, but not consistently. (shrink)

Background Caring is a core function of nurses and it confers upon them ethical obligations as ethical agents. Failure to carry out such ethical obligations raises ethical concerns. This study was not intended to explore ethical concerns, but the reported findings reveal problems which have ethical implications. This paper aims to elucidate the ethical issues inherent in the findings and propose strategies to mitigate them. Research design and methods An exploratory-descriptive qualitative design was used within a larger Action Research Study. (...) Data were collected through focus group discussions with nurse/midwives, and through exit interviews which were conducted with the women who participated in the study on their day of discharge. Six focus group discussions and thirty exit interviews were conducted, and data were analysed through thematic analysis. Participants and research context The study took place at selected maternal and child healthcare settings in Lilongwe, Malawi. The participants were nurse/midwives and women who were admitted in maternal and child healthcare settings and were purposively sampled. Ethical considerations Ethical approval was obtained from the relevant ethics committee and all ethical guidelines were followed in the conduct of the study. Findings The findings are presented under three themes which emerged from the data. The findings reveal effects of staff shortages on patient outcomes, problems experienced in low resource clinical settings and disrespectful nurse/patient communication. Conclusion The findings reveal that institutional factors constrain moral agency and patient safety is severely compromised in some of the clinical settings in Malawi which raises serious ethical concerns. (shrink)

Background Patient dignity is sometimes neglected in intensive care unit (ICU) settings, which may potentially cause psychological harm to critically ill patients. However, no instrument has been specifically developed to evaluate the behaviors of dignified care among critical care nurses. Aim This study aimed to develop and evaluate ICU Dignified Care Questionnaire (IDCQ) for measurement of self-assessed dignity-conserving behaviors of critical care nurses during care. Methods The instrument was developed in 3 phases. Phase 1: item generation; phase 2: a two-round (...) Delphi survey and a readability pilot study; phase 3: cross-sectional survey with model estimation. The questionnaire was evaluated by item analysis, exploratory and confirmatory factor analysis, assessment of internal consistency reliability, and test-retest reliability. The investigation was conducted using a convenience sample of 392 critical care nurses from 6 cities in Zhejiang Province, China, of which 30 participated in the test-retest reliability survey 2 weeks later. Ethical considerations The study was approved by ethics committee. All participants provided written informed consent before the survey. The questionnaire survey was anonymous. Results The results showed acceptable reliability and validity of the IDCQ. The 17-item final version questionnaire was divided into 2 dimensions: absolute dignity and relative dignity. These two factors accounted for 62.804% of the total variance, and model fitting results were acceptable. The Cronbach’s alpha coefficient of the questionnaire was 0.94, and the test-retest intraclass correlation coefficient (ICC) was 0.88 after 2 weeks. Conclusions This study developed a brief and reliable instrument (IDCQ) to assess dignified care in ICU nursing. It can help critical care nurses identify their behaviors in maintaining patient dignity and discover their deficiencies. It may also serve as a clinical nursing management tool to help reduce patient disrespect experience in ICU. (shrink)

Deception is common in dementia care, although its moral legitimacy is questionable. This paper conceptually clarifies when does dementia care involve deception and argues that care ethics is an appropriate ethical framework to guide dementia care compared with the mainstream ethical theories that emphasize abilities. From a perspective of care ethics, this paper claims that morally defensible deception is context-specific, embodied as a caring process that needs to be identified through instant, creative and interactive care procedures. According to this argument, (...) it further analyses and concludes the moral rationality of deception in five common cases. While deception is morally justified in many situations, another concern is that it is usually not the last resort but a means of convenience. As the ability to interact, autonomy and dignity of persons with dementia (PWDs) are generally ignored; nurses need more training and education to master the essential procedures to ensure that the value of authenticity and autonomy is maintained and considered throughout dementia care. (shrink)

ABSTRACT The technological revolution has created enormous opportunities for the provision of affordable, accessible, and flexible mental healthcare. Yet it also creates complexities and ethical challenges. While some of these challenges may be similar to face-to-face care, their nuance in the online milieu is different, as relationships, identities and boundaries in this setting are fluid, and there is an absence of physical presence. In this paper we consider the specific ethical complexities involved in the provision of a social networking intervention (...) for depression and problematic alcohol use involving providers and peers. We present a case in which clinicians encountered a participant who repeatedly expressed suicidal thoughts in this online forum, and reflect on how this situation was managed. In analyzing this case, we use relational ethics—which proposes that interpersonal relationships are the fulcrum for ethical decision-making and action—together with actor-network theory—which highlights the power of technology to transform and mediate social and ethical relationships. Our analysis demonstrates the need to move beyond human-centric approaches, to recognize the role of both human and non-human actors in shaping moral decisions and behavior in the provision of e-mental healthcare. (shrink)

Background: Providing care for a home-dwelling person with dementia who resists care is an ethical and practical complex and challenging task. Faced with a growing number of persons with dementia, the healthcare professional’s understanding of how to best care for and prevent unnecessary use of coercion with persons with dementia is of key importance. Research aim: The aim of this study was to explore the use of trust-building interventions in home-dwelling persons with dementia resisting care, as described by health professionals (...) in documents of decisions of forced treatment and care. Research design: A qualitative thematic document analysis inspired by critical realism was conducted. Participants and research context: Descriptions of trust-building interventions were extracted from 88 documents of forced treatment and care for home-dwelling persons with dementia, receiving home healthcare, in 2015 and 2016. Ethical considerations: Approved by the Regional Committee for Medical and Health Research Ethics, reference number 2017/788, and controlled by the Norwegian Centre for Research Data, reference number 54897. The study adhered to the guidelines of the Declaration of Helsinki. Findings: We found that “balancing safe care with the person’s integrity” was an overarching theme that permeated the descriptions of trust-building interventions in the study. Three main themes were identified when the data were analyzed: safeguarding care, protecting integrity, and optimizing the environment. Discussion and conclusion: Health professionals balanced on a thin line between care and integrity when met with resistance from person with dementia. However, the trust-building interventions used in the most challenging situations did not differ from the interventions used in general in dementia care. Two knowledge gaps were identified: how to perform appropriate assessments of situations of home-dwelling persons with dementia when met with resistance to care, and whether environmental initiatives may also benefit home-dwelling persons with dementia who are not easily cared for. (shrink)

Background: Studies have demonstrated the extensive use of coercion in Norwegian nursing homes, which represents ethical, professional as well as legal challenges to the staff. We have, however, limited knowledge of the experiences and views of nursing home patients and their relatives. Objectives: The aim of this study is to explore the perspectives of nursing home patients and next of kin on the use of coercion; are there situations where the use of coercion can be defended, and if so, under (...) which circumstances? Methods: The data are based on individual interviews with 35 patients living in six nursing homes and seven focus group interviews with 60 relatives. Ethical considerations: Participation was based on written informed consent, and the study was approved by the Regional Committees for Medical and Health Research Ethics. Results: More than half of the patients and the majority of the relatives accepted the use of coercion, trusting the staff to act in the patient’s best interest. However, the acceptance of coercion is strongly related to the patients’ lack of understanding, to prevent health risks and to preserve the patient’s dignity. Conclusion: The majority of nursing home patients and relatives accepted the use of coercion in specific situations, while at the same time they emphasised the need to try alternative strategies first. There is still a need for good qualitative research on the use of coercion in nursing homes, especially with a closer focus on the perspectives and experiences of nursing home patients. (shrink)

Nurses may, and often do, experience moral distress in their careers. This is related to the complicated work environment and the complex nature of ethical situations in everyday nursing practice. The outcomes of moral distress may include psychological and physical symptoms, reduced job satisfaction and even inadequate or inappropriate nursing care. Moral distress can also impact retention of nurses. Although research has grown considerably over the past few decades, there is still a great deal about this topic that we do (...) not know including how to deal well with moral distress. A critical key step is to develop a deeper understanding of relational practice as it pertains to moral distress. In this article, exploration of the experience of moral distress among nurses is guided by the key elements of relational ethics. This ethical approach was chosen because it recognizes that ethical practice is situated in relationships and it acknowledges the importance of the broader environment on influencing ethical action. The findings from this theoretical exploration will provide a theoretical foundation upon which to advance our knowledge about moral distress. (shrink)

BackgroundIn our globalizing world, caregivers are increasingly being confronted with the challenges of providing intercultural healthcare, trying to find a dignified answer to the vulnerable situation of ethnic minority patients. Until now, international literature lacks insight in the intercultural care process as experienced by the ethnic minority patients themselves. We aim to fill this gap by analysing qualitative literature on the intercultural care encounter in the hospital setting, as experienced by ethnic minority patients.MethodsA systematic search was conducted for papers published (...) between 2000 and 2015. Analysis and synthesis were guided by the critical interpretive synthesis approach.ResultsFifty one articles were included. Four dimensions emerged, describing the intercultural care encounter as a meeting of two different cultural contexts of care, in a dynamic and circular process of balancing between the two cultural contexts, which is influenced by mediators as concepts of being human, communication, family members and the hospital’s organizational culture.ConclusionsThis review provides in-depth insight in the dynamic process of establishing intercultural care relationships in the hospital. We call for a broader perspective towards cultural sensitive care in which patients are cared for in a holistic and dignity-enhancing way. (shrink)

The study of the neuroscience and genomics of mental illness are increasingly intertwined. This is mostly due to the translation of medical technologies into psychiatry and to technological convergence. This article focuses on psychosis. I argue that the convergence of neuroscience and genomics in the context of psychosis is morally problematic, and that ethics scholarship should go beyond the identification of a number of ethical, legal, and social issues. My argument is composed of two strands. First, I argue that we (...) should respond to technological convergence by developing an integrated, patient-centred approach focused on the assessment of individual vulnerabilities. Responding to technological convergence requires that we integrate insights from several areas of ethics, translate bioethical principles into the mental health context, and proactively try to anticipate future ethical concerns. Second, I argue that a nuanced understanding of the concept of vulnerability might help us to accomplish this task. I borrow Florencia Luna’s notion of ‘layers of vulnerability’ to show how potential harms or wrongs to individuals who experience psychosis can be conceptualised as stemming from different sources, or layers, of vulnerability. I argue that a layered notion of vulnerability might serve as a common ground to achieve the ethical integration needed to ensure that biomedical innovation can truly benefit, and not harm, individuals who suffer from psychosis. (shrink)

Expanded non-invasive prenatal testing (NIPT) has provoked ethical concerns about its justifiable scope. In this paper, we evaluate the role of the child’s right to an open future in setting the scope of NIPT. This ‘open future principle’ has been cited in arguments both limiting and expanding parental freedoms. This moral right holds that adult autonomy rights which children cannot yet exercise should nonetheless be protected until they can. Its purpose is to protect the future autonomy of the child as (...) a future adult. Several authors have extended this rationale from child to fetus. However, the right was not anticipated to apply to the fetus, a non-legal entity in many jurisdictions. The aim of this paper is to reconsider whether this principle is useful to help deliberate the scope of NIPT. We find that extending the open future principle to delineate the scope of NIPT is theoretically flawed. We contend that in the prenatal context its value primarily lies with counselling for prenatal screening where it can be used to encourage parents’ reflection on the implications of knowing for the sake of knowing on their future children and their relationship with them. (shrink)

Background: Ethics and dignity in prehospital emergency care are important due to vulnerability and suffering. Patients can lose control of their body and encounter unfamiliar faces in an emergency situation. Objective: To describe what specialist ambulance nurse students experienced as preserved and humiliated dignity in prehospital emergency care. Research design: The study had a qualitative approach. Method: Data were collected by Flanagan’s critical incident technique. The participants were 26 specialist ambulance nurse students who described two critical incidents of preserved and (...) humiliated dignity, from prehospital emergency care. Data consist of 52 critical incidents and were analyzed with interpretive content analysis. Ethical considerations: The study followed the ethical principles in accordance with the Declaration of Helsinki. Findings: The result showed how human dignity in prehospital emergency care can be preserved by the ambulance nurse being there for the patient. The ambulance nurses meet the patient in the patient’s world and make professional decisions. The ambulance nurse respects the patient’s will and protects the patient’s body from the gaze of others. Humiliated dignity was described through the ambulance nurse abandoning the patient and by healthcare professionals failing, disrespecting, and ignoring the patient. Discussion: It is a unique situation when a nurse meets a patient face to face in a critical life or death moment. The discussion describes courage and the ethical vision to see another human. Conclusion: Dignity was preserved when the ambulance nurse showed respect and protected the patient in prehospital emergency care. The ambulance nurse students’ ethical obligation results in the courage to see when a patient’s dignity is in jeopardy of being humiliated. Humiliated dignity occurs when patients are ignored and left unprotected. This ethical dilemma affects the ambulance nurse students badly due to the fact that the morals and attitudes of ambulance nurses are reflected in their actions toward the patient. (shrink)