To Örebro University

Background: Clinical ethics support (CES) is increasingly recognised as essential in healthcare, yet its evaluation remains challenging due to the complexity of CES practices and the latent, psychosocial nature of relevant outcomes. The European Moral Case Deliberation Outcomes Instruments (Euro-MCD original and 2.0) represents important steps in operationalising CES outcomes. However, there remains a need for a further theoretically grounded and psychometrically robust instrument. This study aimed to revise the Euro-MCD 2.0 and to develop and psychometrically test a new measurement instrument for CES.

Methods: A sequential mixed-methods instrument redevelopment and validation design was used, guided by an abductive, theory-driven approach. Content validity processes involved conceptual framing, item revision, item development, and cognitive evaluation. Construct validity processes involved psychometric testing using survey data, incorporating principal component analysis and complementary item-level assessments.

Results: The revision of Euro-MCD 2.0 resulted in the Clinical Ethics Support Measurement Instrument (CES-MI), assessing ethical competence and ethical climate. Ethical competence comprises holding moral judgement, being responsive, and acting with moral courage (9 items, using a 5-point scale assessing perceived difficulty). Ethical climate comprises permissive dialogue, supportive relationships, and managing ethical concerns together (7 items, using a 4-point scale assessing perceived extent). Measurement properties were generally strong: targeting was appropriate, response categories functioned as intended, and only minor issues, such as limited local dependencies were observed. Reliability indices were high, unidimensionality was supported across the constructs, and no differential item functioning was detected by sex or intervention groups.

Conclusions: The CES-MI is a coherent, theoretically grounded, and psychometrically robust instrument for measurement, suitable for both clinical practice and research. The strong validity likely reflects the extensive qualitative and psychometric work underpinning the CES-MI, together with a user-friendly response format that supports reflective and authentic self-assessment. Next steps include examining the instrument's sensitivity to change over time for example by exploring whether open-ended follow-up questions could deepen understanding of concrete changes, as well as, assessing applicability across diverse healthcare settings.

BACKGROUND: Intensive care unit (ICU) admissions among older patients are increasing, posing significant challenges to already strained healthcare systems. Decision-making around ICU admission in times of limited resources may provide important knowledge about difficult prioritisations, particularly for older patients. Thus, the aim was to investigate ICU-admission decisions for older patients with COVID-19.

METHODS: A mixed-methods approach. We audio-recorded ten COVID Rounds and nine Moral Case Deliberations for 34 patients across three Swedish hospitals during the pandemic, and collected data from medical records of 329 patients aged ≥ 65 diagnosed with COVID-19. Data were analysed using qualitative content analysis and multiple regression.

RESULTS: Among 239 patients with documented decisions in medical records, 56% included explicit justifications. The justifications included considerations of medical benefit (not-too- ill/too-ill), general condition (good/frail), age (not-too-old/high age), professional duty (benefit of the doubt/do no harm) and "worth giving it a go" (grit and will to live/lack of will and coping). A minority (31%) of decisions favoured ICU admission. Justifications supporting admission were predominantly drawn from discussions in COVID Rounds and MCDs, where patient grit was a recurring argument. In regression analyses, age ≥ 80 years was the only factor significantly associated with not being admitted to ICU and having a documented justification. Few decisions explicitly referred to COVID-19-specific factors.

CONCLUSION: Our findings reflect patterns similar to pre-pandemic ICU decision-making, suggesting continuity in clinical reasoning. However, the limited documentation of justifications-especially in favour of admission-warrants attention, emphasising the need for clearer reasoning in medical records. Our findings identify chronological age as a key triage factor, normatively supported by the ethical principles of non-maleficence, justice, and Sweden's legal priority-setting principle of Needs and Solidarity-which emphasises care only when benefit is likely. We therefore advocate for national (and potentially international) guidance on triage systems that support a palliative approach for very old patients. While grit may be relevant to ICU admission due to its link to potential benefit, its use raises ethical concerns, particularly in relation to Needs and Solidarity and Human Dignity. We recommend its cautious application pending further research.

Clinical Ethics Support (CES) includes various forms of systematic support to deal with ethical challenges in healthcare and case-based CES (C-CES) is used for CES in particular cases. The aim was to describe and normatively discuss organizational and methodological aspects of C-CES used in Swedish healthcare. A mixed-methods approach was used. A descriptive survey was answered regarding eight organizations on hospital, regional and national level, with large variations in the number of conducted C-CES activities. Data were compiled and frequencies calculated. Based on the survey results, normative questions were formulated. Six participants, with expertise of C-CES, participated in a normative group discussion. Field notes and transcribed data were analysed qualitatively. The top ranked goal of C-CES was "Supporting decision making". Mainly prospective cases were used and C-CES was carried out as un-planned and pre-planned sessions. The normative results showed the importance of avoiding making C-CES unattractive to clinicians, for instance by keeping the time frame. The professional backgrounds of C-CES leaders varied greatly and arguments were provided for the facilitating role and that C-CES leaders ought not facilitate where they have been clinically engaged. Identified challenges included variations in uptake of C-CES activities that do not mirror the ethical challenges of the context. The unfair uptake of C-CES can be compared with the uptake in Norway where there are legal requirements for CES. In this study patients and families were not reported to request or attend C-CES. Thus, further research and interventions are needed to ensure their representation in Swedish C-CES.

BACKGROUND: Persons diagnosed with progressive neurological disease who experience breathing difficulties and impaired cough function, are a vulnerable group. Some are in the late end-of-life stage, and providing the right kind of support is a challenge. There is a need to address the broader experiences of living with a progressive neurological disease including breathing difficulties and impaired cough function. Therefore, the aim was to explore persons' experiences of living with progressive neurological disease and breathing difficulties.

METHODS: We used qualitative content analysis, drawing on 15 interviews with 10 persons with progressive neurological disease.

RESULTS: Living with progressive neurological disease and breathing difficulties can be understood as a reconciliation with a difficult life, a powerlessness in the struggle against deterioration and a fluctuation between feelings of trust and mistrust. An acceptance of the severity was described and a strive to make the best of life. The ongoing struggle against deterioration brought feelings of uncertainty, fear, and powerlessness, impacting the entire life. Feeling safe, supported, and receiving symptom-relief care highlighted the importance of being listened to, feeling goodwill and caring presence of others. Feeling badly treated and, not respected as a whole and competent person, were expressed as being devastating and a sense of being abandoned by health care.

CONCLUSIONS: Our study emphasizes the importance of providing palliative person-centered care for this group. This implies a holistic, dignity-preserving, empathetic and compassionate care including symptom relief early in the illness trajectory.

OBJECTIVE: The goal of this study was to explore patient-physical therapist interaction and the physical therapist's experience of the introductory session for mechanical insufflation-exsufflation (MI-E) device treatment for patients with progressive neurological disease.

METHODS: Qualitative content analysis of participant-observation of interaction between patients and physical therapists during 9 MI-E introduction sessions in different clinical care settings and 10 follow-up interviews with 6 physical therapists.

RESULTS: The introduction of MI-E emerged as a process of instilling a sense of security in the patient. The process can be described in 4 steps: (1) gain understanding by being responsive to the person's whole life-situation; (2) share knowledge and expectations in a respectful and permissive way; (3) introduce the device in a gentle and reciprocal interactivity; and (4) adapt to home-use in an inclusive dialogue with the patient and their significant others. Physical therapists described a need for assurance to instill a sense of security in the patient, implying a need for confidence, competent peers, guiding yet flexible routines, and emotional support.

CONCLUSION: Physical therapists have a need to foster assurance in employing a person-centered approach to make a patient feel secure in the process of introducing MI-E treatment. Multiple modes of professional knowledge were used together with action-based and relational-based ethics to facilitate a person-centered care approach. This seems to be a promising approach for providing good care when introducing MI-E to patients. Further research is needed to explore this from the patient's perspective.

IMPACT: This study added to the body of knowledge regarding MI-E treatment in relation to patients. This has direct implication, particularly for inexperienced physical therapists, for informed care for the patient during introduction. Our study also supports that person-centered care should be implemented at all levels of health care to make it possible for physical therapists to practice person-centered care.

The evaluation of the European Moral Case Deliberation Outcomes project (Euro-MCD) has resulted in a revised evaluation instrument, knowledge about the content of MCD (moral case deliberation), and the perspectives of those involved. In this paper, we report on a perspective that has been overlooked, the facilitators'. We aim to describe facilitators' perceptions of high-quality moral case deliberation and their Euro-MCD sessions. The research took place in Norway, Sweden, and the Netherlands using a survey combined with interviews with 41 facilitators. Facilitators' perceived that attaining a high-quality MCD implies fostering a safe and respectful atmosphere, creating a wondering mode, being an attentive authority, developing moral reflective skills, reaching a common understanding, and ensuring organisational prerequisites for the MCD sessions. Our central conclusion is that efforts at three levels are required to attain a high-quality MCD: trained and virtuous facilitator; committed, respectful participants; and organizational space. Furthermore, managers have a responsibility to prepare MCD participants for what it means to take part in MCD.

BACKGROUND: Vascular surgery offers a range of treatments to relieve pain and ulcerations, and to prevent sudden death by rupture of blood vessels. The surgical procedures involve risk of injury and harm, which increases with age and frailty leading to complex decision-making processes that raise ethical questions. However, how vascular surgeons negotiate these questions is scarcely studied. The aim was therefore to explore vascular surgeons' moral reasoning of what ought to be done for the patient.

METHODS: Qualitative, semi-structured interviews were conducted with 19 vascular surgeons working at three Swedish university hospitals. Data were analysed according to systematic text condensation.

RESULTS: The surgeons' moral reasoning about what ought to be done comprised a quest to relieve suffering and avoid harm by exploring what is reasonable to do for the patient. Exploring reasonableness included to shift one´s perspective from the vessels to the whole person, to balance patient's conflicting needs and to place responsibility for right decision on one´s shoulders. The shift from blood vessels to the whole person implied gaining holistic knowledge in pondering of what is best, struggling with one´s authority for surgery through dialogue, and building relationship for mutual security. To balance patient's conflicting needs implied weighing the patient's independence and a sense of being whole against ease of suffering, respecting the patient's will against protecting life and well-being, and weighing longer life against protecting the present well-being. Finally, to place responsibility on one´s shoulders was conveyed as an urge to remind oneself of the risk of complications, withholding one's power of proficiency, and managing time during the illness course.

CONCLUSIONS: This study contributes to uncovering how moral reasoning is embodied in the vascular surgeons' everyday clinical discourse as a tangible part of their patient care. The results underpin the significance of moral considerations in the assemblage of medical knowledge and technical skills to further understand vascular surgeons' clinical practice. The clinical application of these results is the need of forums with sufficient possibilities for articulating these important moral considerations in everyday care.

Ethics support services like Moral Case Deliberation (MCD) intend to support healthcare professionals in ethically difficult situations. To assess outcomes of MCD, the Euro-MCD Instrument has been developed. Field studies to test this instrument are needed and have been conducted, examining important outcomes before MCD participation and experienced outcomes. The current study aimed to (1) describe how participants' perceive the importance of MCD outcomes after MCD; (2) compare these perceptions with those before MCD participation; and (3) test the factor structure of these outcomes. Swedish, Norwegian and Dutch healthcare professionals rated the importance of outcomes in the Euro-MCD Instrument after four and eight MCDs. Ratings were compared with those before MCD participation using paired and independent samples t-tests. The factor structure was tested using exploratory factor analyses. After 4 and 8 MCDs, 443 respectively 247 respondents completed the instrument. More than 69% rated all MCD outcomes as 'quite' or 'very' important, especially outcomes from Enhanced Collaboration, Improved Moral Reflexivity and Improved Moral Attitude. Significant differences for 16 outcomes regarding ratings before and after MCD participation were not considered meaningful. Factor analyses suggested three categories, which seemingly resemble the domains Improved Moral Reflexivity, Enhanced Collaboration and a combination of Improved Moral Attitude and Enhanced Emotional Support. After participation in MCDs, respondents confirmed the importance of outcomes in the Euro-MCD Instrument. The question on perceived importance and the categorization of outcomes need reconsideration. The revised instrument will be presented elsewhere, based on all field studies and theoretical reflections.