Stretching oneself too thin and facing ethical challenges: Healthcare professionals' experiences during the COVID-19 pandemic.

BACKGROUNDS: Most countries are facing increased pressure on healthcare resources. A better understanding of how healthcare providers respond to new demands is relevant for future pandemics and other crises. OBJECTIVES: This study aimed to explore what nurses and doctors in Norway reported as their main ethical challenges during two periods of the COVID-19 pandemic: February 2021 and February 2022. RESEARCH DESIGN: A longitudinal repeated cross-sectional study was conducted in the Western health region of Norway. The survey included an open-ended question about ethical challenges among doctors and nurses in hospital departments. Free-text comments were analysed using Systematic Text Condensation and also presented in a frequency table. ETHICAL CONSIDERATIONS: Ethical approval was granted by the Regional Research Ethics Committee in Western Norway (131,421). All participants provided consent when participating in the study. RESULTS: In 2021, 249 and in 2022, 163 healthcare professionals responded to the open-ended question. Nurses and doctors reported three main categories of ethical challenges related to the COVID-19 pandemic: (1) barriers that hindered them in acting as they ethically would have wanted to do; (2) priority-setting dilemmas linked to overtreatment, transfer of resources and ranking patient needs; and (3) workload expansion threatening work-life balance and employees' health. Category one comprised of resource barriers, regulatory barriers, system barriers, and personal barriers. Regulatory barriers, especially visitor restrictions for next-of-kin, were the most frequently reported in 2021. Resource barriers, related to the increased scarcity of qualified staff, were most frequently reported in 2022. Clinicians stretched themselves thin to avoid compromising on care, diagnostics, or treatment. CONCLUSIONS: Developing clinicians' ability to handle and cope with limited healthcare resources is necessary. To foster resilience and sustainability, healthcare leaders, in collaboration with their staff, should ensure fair priority-setting and initiate reflections among doctors and nurses on what it implies to provide 'good enough' care.

Ethical dilemmas for nursing home doctors during the COVID-19 pandemic. / Etiske dilemmaer for sykehjemsleger under covid-19-pandemien.

BACKGROUND: Nursing home residents were particularly vulnerable to a serious clinical course of COVID-19. It was therefore decided early in the pandemic that nursing homes needed to be protected through measures such as testing and isolation regimens and restrictions on visiting. This entailed new procedures and guidelines for nursing home doctors. Norwegian and international studies show that the pandemic presented new ethical dilemmas for healthcare staff. The aim of this study was to provide a better understanding of the ethical issues faced by nursing home doctors during the pandemic. MATERIAL AND METHOD: Nine semi-structured in-depth interviews with doctors at five nursing homes in Bergen were analysed using Attride-Stirling's thematic network analysis. RESULTS: The doctors told of challenges related to deciding the level of treatment, setting limits for palliative care, adapting visiting restrictions, and assessing the use of coercion with regard to testing and isolation. This entailed difficult ethical considerations whereby doctors were faced with conflicts of interest and value judgements, central to which was consideration for the individual resident versus society. INTERPRETATION: The nursing home doctors in our study found it difficult to find a balance between protecting the residents' autonomy and preventing the spread of infection.

Baseline frailty status and outcomes important for shared decision-making in older adults receiving transcatheter aortic valve implantation, a prospective observational study.

AIMS: The objective of this study was to examine baseline frailty status (including cognitive deficits) and important clinical outcomes, to inform shared decision-making in older adults receiving transcatheter aortic valve implantation (TAVI). METHODS AND RESULTS: We conducted a prospective, observational study of 82 TAVI patients, recruited 2013 to 2015, with 2-year follow-up. Mean age was 83 years (standard deviation (SD) 4.7). Eighteen percent of the patients were frail, as assessed with an 8-item frailty scale. Fifteen patients (18%) had a Mini-Mental Status Examination (MMSE) score below 24 points at baseline, indicating cognitive impairment or dementia and five patients had an MMSE below 20 points. Mean New York Heart Association (NYHA) class at baseline and 6 months was 2.5 (SD 0.6) and 1.4 (SD 0.6), (p < 0.001). There was no change in mean Nottingham Extended Activities of Daily Living (NEADL) scale between baseline and 6 months, 54.2 (SD 11.5) and 54.5 (SD 10.3) points, respectively, mean difference 0.3 (p = 0.7). At 2 years, six patients (7%) had died, four (5%, n = 79) lived in a nursing home, four (5%) suffered from disabling stroke, and six (7%) contracted infective endocarditis. CONCLUSIONS: TAVI patients had improvement in symptoms and maintenance of activity of daily living at 6 months. They had low mortality and most patients lived in their own home 2 years after TAVI. Complications like death, stroke, and endocarditis occurred. Some patients had cognitive impairment before the procedure which might influence decision-making. Our findings may be used to develop pre-TAVI decision aids.

Factors affecting quality of end-of-life hospital care - a qualitative analysis of free text comments from the i-CODE survey in Norway.

BACKGROUND: The ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives' point of view, as expressed in free text comments. METHODS: 194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6-8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to non-responders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation. RESULTS: Of the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation. CONCLUSIONS: Our findings suggest that hospitals caring for cancer patients at the end of life and their relatives, should systematically identify and attend to practical needs, as well as address important organizational issues. Education of staff members ought to emphasize how professional conduct and communication fundamentally affect patient care and relatives' coping.

Medical students' attitudes and expectations for future working conditions. / Medisinstudenters holdninger og forventninger til fremtidige arbeidsvilkår.

BACKGROUND: The doctors' strike in 2016 highlighted an ongoing debate on the tightening of working conditions for doctors. With this strike as a backdrop, we wanted to investigate the attitudes and expectations for future working conditions among medical students. MATERIAL AND METHOD: Four focus-group interviews with a total of 21 medical students (48 % women, age 21-38 years) in their third to sixth year of study were conducted and analysed with the aid of systematic text condensation. RESULTS: The students described how the doctors' efforts to help each other had a positive effect on the working environment, but might also paradoxically worsen the working conditions of the collegial community. They highlighted the importance of consensus around public health services, a good professional community and idealism, but perceived that these aspects could be threatened by competition for positions and distrust in political governance processes. The need to be competent and succeed in competing for temporary jobs, as well as a strong motivation to become a doctor, made the students vulnerable to accepting tough working conditions. The students' attitudes and expectations had mainly been formed through work placement experience and by family members, but the strike had impacted particularly the older cohorts' assessment of their future working situation. INTERPRETATION: Medical students express concerns about accepting entry into a system that they are not immediately able to change, and where safeguarding their own needs and a favourable work-life balance might be difficult. This has implications for raising awareness of these issues during the medical studies and developing an organisational culture that ensures justifiable and sustainable working conditions for doctors.

Doctors' learning experiences in end-of-life care - a focus group study from nursing homes.

BACKGROUND: Doctors often find dialogues about death difficult. In Norway, 45% of deaths take place in nursing homes. Newly qualified medical doctors serve as house officers in nursing homes during internship. Little is known about how nursing homes can become useful sites for learning about end-of-life care. The aim of this study was to explore newly qualified doctors' learning experiences with end-of-life care in nursing homes, especially focusing on dialogues about death. METHODS: House officers in nursing homes (n = 16) participated in three focus group interviews. Interviews were audiotaped and transcribed verbatim. Data were analysed with systematic text condensation. Lave & Wenger's theory about situated learning was used to support interpretations, focusing on how the newly qualified doctors gained knowledge of end-of-life care through participation in the nursing home's community of practice. RESULTS: Newly qualified doctors explained how nursing home staff's attitudes taught them how calmness and acceptance could be more appropriate than heroic action when death was imminent. Shifting focus from disease treatment to symptom relief was demanding, yet participants comprehended situations where death could even be welcomed. Through challenging dialogues dealing with family members' hope and trust, they learnt how to adjust words and decisions according to family and patient's life story. Interdisciplinary role models helped them balance uncertainty and competence in the intermediate position of being in charge while also needing surveillance. CONCLUSIONS: There is a considerable potential for training doctors in EOL care in nursing homes, which can be developed and integrated in medical education. This practice based learning arena offers newly qualified doctors close interaction with patients, relatives and nurses, teaching them to perform difficult dialogues, individualize medical decisions and balance their professional role in an interdisciplinary setting.

Drug treatment at the end of life: an epidemiologic study in nursing homes.

OBJECTIVE: To examine drug treatment in nursing home patients at the end of life, and identify predictors of palliative drug therapy. DESIGN: A historical cohort study. SETTING: Three urban nursing homes in Norway. SUBJECTS: All patients admitted from January 2008 and deceased before February 2013. MAIN OUTCOME MEASURES: Drug prescriptions, diagnoses, and demographic data were collected from electronic patient records. Palliative end-of-life drug treatment was defined on the basis of indication, drug, and formulation. RESULTS: 524 patients were included, median (range) age at death 86 (19-104) years, 59% women. On the day of death, 99.4% of the study population had active prescriptions; 74.2% had palliative drugs either alone (26.9%) or concomitantly with curative/preventive drugs (47.3%). Palliative drugs were associated with nursing home, length of stay > 16 months (AOR 2.10, 95% CI 1.12-3.94), age (1.03, 1.005-1.05), and a diagnosis of cancer (2.12, 1.19-3.76). Most initiations of palliative drugs and withdrawals of curative/preventive drugs took place on the day of death. CONCLUSION: Palliative drug therapy and drug therapy changes are common for nursing home patients on the last day of life. Improvements in end-of-life care in nursing homes imply addressing prognostication and earlier response to palliative needs.

Experiences of individually tailored physical exercise in boys with Duchenne muscular dystrophy: a qualitative study.

INTRODUCTION: Excessive and insufficient physical exercise have both been associated with accelerated muscle function decline in boys with Duchenne Muscular Dystrophy (DMD), and optimal exercise remains unclear. OBJECTIVE: This study explored participants' experiences with a one-year training program. METHODS: Five semi-structured qualitative individual interviews and one focus group interview were conducted and analyzed using systematic text condensation. RESULTS: Participants included boys with DMD who participated in the intervention study (n = 10), their relatives and/or assistants (n = 7). Four main themes emerged: 1) the crucial role of motivation to maintain training routines, 2) benefiting from exercise, but with a need for balancing it, 3) time management challenges, and 4) the training as a social arena and meeting place. The participants emphasized the importance of experiencing progress, basic skills and enjoyable training. Parents were reassured knowing the appropriate exercise intensity and technique. The boys needed flexibility and support to find a balance between exercise and other activities and described benefits from sharing experiences with each other. CONCLUSION: Clinical guidelines for physical exercise in DMD should encompass customization of exercise interventions supporting motivational factors, balance and social interaction, and identify competing commitments. Successful training programs may enhance quality of life and functionality for these boys.

"The challenge is the complexity" - A qualitative study about decision-making in advanced lung cancer treatment.

INTRODUCTION: The value of shared decision-making and decision aids (DA) has been well documented yet remain difficult to integrate into clinical practice. We wanted to investigate needs and challenges regarding decision-making about advanced lung cancer treatment after first-line therapy, focusing on DA applicability. METHODS: Qualitative data from separate, semi-structured focus groups with patients/relatives and healthcare professionals were analysed using systematic text condensation. 12 patients with incurable lung cancer, seven relatives, 12 nurses and 18 doctors were recruited from four different hospitals in Norway. RESULTS: The participants described the following needs and challenges affecting treatment decisions: 1) Continuity of clinician-patient-relationships as a basic framework for decision-making; 2) barriers to information exchange; 3) negotiation of autonomy; and 4) assessment of uncertainty and how to deal with it. Some clinicians feared DA would steal valuable time and disrupt consultations, arguing that such tools could not incorporate the complexity and uncertainty of decision-making. Patients and relatives reported a need for more information and the possibility both to decline or continue burdensome therapy. Participants welcomed interventions supporting information exchange, like communicative techniques and organizational changes ensuring continuity and more time for dialogue. Doctors called for tools decreasing uncertainty about treatment tolerance and futile therapy. CONCLUSION: Our study suggests it is difficult to develop an applicable DA for advanced lung cancer after first-line therapy that meets the composite requirements of stakeholders. Comprehensive decision support interventions are needed to address organizational structures, communication training including scientific and existential uncertainty, and assessment of frailty and treatment toxicity.

Feasibility and acceptability of introducing advance care planning on a thoracic medicine inpatient ward: an exploratory mixed method study.

BACKGROUND AND AIMS: Advance care planning (ACP) is communication about wishes and preferences for end-of-life care. ACP is not routinely used in any Norwegian hospitals. We performed a pilot study (2014-2017) introducing ACP on a thoracic medicine ward in Norway. The aims of this study were to explore which topics patients discussed during ACP conversations and to assess how patients, relatives and clinicians experienced the acceptability and feasibility of performing ACP. METHODS: Conversations were led by a study nurse or physician using a semistructured guide, encouraging patients to talk freely. Each conversation was summarised in a report in the patient's medical record. At the end of the pilot period, clinicians discussed their experiences in focus group interviews. Reports and transcribed interviews were analysed using systematic text condensation. RESULTS: Fifty-one patients participated in ACP conversations (41-86 years; 9 COPD, 41 lung cancer, 1 lung fibrosis; 11 women); 18 were accompanied by a relative. Four themes emerged: (1) disturbing symptoms, (2) existential topics, (3) care planning and (4) important relationships. All participants appreciated the conversations. Clinicians (1 physician and 7 nurses) participated in two focus group interviews. Reports from ACP conversations revealed patient values previously unknown to clinicians; important information was passed on to primary care. Fearing they would deprive patients of hope, clinicians acted as gatekeepers for recruitment. Although they reported barriers during recruitment, many clinicians saw ACP as pertinent and called for time and skills to integrate it into their daily clinical practice. CONCLUSIONS: Patients, relatives and clinicians showed a positive attitude towards ACP. Focusing on present and future symptom control may be an acceptable way to introduce ACP. Important aspects for implementing ACP in this patient group are management support, education, training, feasible routines and allocated time to perform the conversations.

A novel geriatric assessment frailty score predicts 2-year mortality after transcatheter aortic valve implantation.

AIMS: Established surgical scores have limitations in delineating risk among candidates for transcatheter aortic valve implantation (TAVI). Assessment of frailty might help to estimate the mortality risk and identify patients likely to benefit from treatment. The aim of the study was to develop a frailty score to guide the decision for TAVI. METHODS AND RESULTS: We conducted a prospective observational study in patients ≥70 years referred for TAVI during 2011-15. A Heart Team had declined the patients for open heart surgery due to high risk but accepted them for TAVI. Prior to the procedure, a geriatric assessment (GA) was performed. Based on this, an 8-element frailty score with a 0-9 (least frail-most frail) scale was developed. A total of 142 patients, 54% women, mean age 83 (standard deviation 4) years, with severe and symptomatic aortic stenosis were assessed. All-cause 2 year mortality was 11%. The novel GA frailty score predicted 2-year mortality in Cox analyses, also when adjusted for age, gender, and logistic EuroSCORE [hazard ratio (HR) 1.75, 95% confidence interval (CI): 1.28-2.42, P < 0.001]. A receiver operating characteristic (ROC) curve analysis indicated that a GA frailty score cut-off at ≥4 predicted 2-year mortality with a specificity of 80% (95% CI: 73-86%) and a sensitivity of 60% (95% CI: 36-80%). The area under the curve was 0.81 (95% CI 0.71-0.90). CONCLUSION: A novel 8-element GA frailty score identified gradations in survival in patients declined for open heart surgery. Patients with higher GA frailty scores had significantly higher 2-year mortality after TAVI.

Advance care planning in life-threatening pulmonary disease: a focus group study.

Advance care planning (ACP) is a communication process for mapping a patient's wishes and priorities for end-of-life care. In preparation for the introduction of ACP in Norway, we wanted to explore the views of Norwegian pulmonary patients on ACP. We conducted four focus group interviews in a Norwegian teaching hospital, with a sample of 13 patients suffering from chronic obstructive pulmonary disease, lung cancer or lung fibrosis. Analysis was by systematic text condensation. Participants' primary need facing end-of-life communication was "the comforting safety", implying support, information and transparency, with four underlying themes: 1) provide good team players; 2) offer conversations with basic information; 3) seize the turning point; and 4) balance transparency. Good team players were skilled communicators knowledgeable about treatment and the last phase of life. Patients preferred dialogues at the time of diagnosis and at different "turning points" in the disease trajectory and being asked carefully about their needs for communication and planning. Transparency was important, but difficult to balance. ACP for patients with life-threatening pulmonary disease should rest upon an established patient-doctor/nurse relationship and awareness of turning points in the patient's disease progression. Individually requested and tailored information can support and empower patients and their relatives.

Conditions for autonomous choice: a qualitative study of older adults' experience of decision-making in TAVR.

BACKGROUND: Patient autonomy is a leading principle in bioethics and a basis for shared decision making. This study explores conditions for an autonomous choice experienced by older adults who recently underwent trans-catheter aortic valve replacement (TAVR). METHODS: Qualitative study entailing semi-structured interviews of a purposive sample of ten older (range 73-89, median 83.5 years) adults after TAVR (median 23 days). The study setting was a cardiac department at a university hospital performing TAVR since 2010. Analysis was by systematic text condensation. RESULTS: Even when choice seemed hard or absent, TAVR-patients deliberately took the chance offered them by processing risk assessment, ambivalence and fate. They regarded declining the treatment to be worse than accepting the risk related to the procedure. The experience of being thoroughly advised by their physician formed the basis of an autonomous trust. The trust they felt for the physicians' recommendations mitigated ambivalence about the procedure and risks. TAVR patients expressed feelings consistent with self-empowerment and claimed that it had to be their decision. Even so, choosing the intervention as an obligation to their family or passively accepting it was also reported. CONCLUSIONS: Older TAVR patients' experience of an autonomous decision may encompass frank tradeoff; deliberate physician dependency as well as a resilient self-view. Physicians should be especially aware of how older adults' subtle cognitive declines and inclinations to preserve their identities which can influence their medical decision making when obtaining informed consent. Cardiologists and other providers may also use these insights to develop new strategies that better respond to such inherent complexities.

Nursing Home Physicians' Assessments of Barriers and Strategies for End-of-Life Care in Norway and The Netherlands.

OBJECTIVES: Working conditions in nursing homes (NHs) may hamper teamwork in providing quality end-of-life (EOL) care, especially the participation of NH physicians. Dutch NH physicians are specialists or trainees in elderly care medicine with NHs as the main workplace, whereas in Norway, family physicians usually work part time in NHs. Thus, we aimed at assessing and comparing NH physicians' perspectives on barriers and strategies for providing EOL care in NHs in Norway and in The Netherlands. DESIGN: A cross-sectional study using an electronic questionnaire was conducted in 2015. SETTING AND PARTICIPANTS: All NH physicians in Norway (approximately 1200-1300) were invited to participate; 435 participated (response rate approximately 35%). Of the total 1664 members of the Dutch association of elderly care physicians approached, 244 participated (response rate 15%). MEASUREMENTS: We explored NH physicians' perceptions of organizational, educational, financial, legal, and personal prerequisites for quality EOL care. Differences between the countries were compared using χ2 test and t-test. RESULTS: Most respondents in both countries reported inadequate staffing, lack of skills among nursing personnel, and heavy time commitment for physicians as important barriers; this was more pronounced among Dutch respondents. Approximately 30% of the respondents in both countries reported their own lack of interest in EOL care as an important barrier. Suggested improvement strategies were routines for involvement of patients' family, pain- and symptom assessment protocols, EOL care guidelines, routines for advance care planning, and education in EOL care for physicians and nursing staff. CONCLUSIONS: Inadequate staffing levels, as well as lack of competence, time, and interest emerge as important barriers to quality EOL care according to Dutch and Norwegian NH physicians. Their perspectives were mostly similar, despite large educational and organizational differences. Key strategies for improving EOL care in their facilities comprise education and incorporating available palliative care tools and systems.

The impact of existential vulnerability for nursing home doctors in end-of-life care: A focus group study.

OBJECTIVE: Explore the impact of existential vulnerability for nursing home doctors' experiences with dying patients and their families. METHODS: We conducted a qualitative study based on three focus group interviews with purposive samples of 17 nursing home doctors. The interviews were audio-recorded, transcribed, and analyzed with systematic text condensation. RESULTS: Nursing home doctors experienced having to balance treatment compromises in order to assist patients' and families' preparation for death, with their sense of professional conduct. This was an arduous process demanding patience and consideration. Existential vulnerability also manifested as powerlessness mastering issues of life and death and families' expectations. Standard phrases could help convey complex messages of uncertainty and graveness. Personal commitment was balanced with protective disengagement on the patient's deathbed, triggering both feelings of wonder and guilt. CONCLUSION: Existential vulnerability is experienced as a burden of powerlessness and guilt in difficult treatment compromises and in the need for protective disengagement, but also as a resource in communication and professional coping. PRACTICE IMPLICATIONS: End-of-life care training for nursing home doctors should include self-reflective practice, in particular addressing treatment compromises and professional conduct in the dialogue with patient and next-of-kin.

End-of-life expectations and experiences among nursing home patients and their relatives--a synthesis of qualitative studies.

OBJECTIVE: Synthesize research about patients' and relatives' expectations and experiences on how doctors can improve end-of-life care in nursing homes. METHODS: We systematically searched qualitative studies in English in seven databases (Medline, Embase, PsycINFO, CINAHL, Ageline, Cochrane Systematic Reviews and Cochrane Trials). We included 14 publications in the analysis with meta-ethnography. RESULTS: Patients and families emphasized the importance of health personnel anticipating illness trajectories and recognizing the information and palliation needed. Family members who became proxy decision-makers reported uncertainty and distress when guidance from health personnel was lacking. They worried about staff shortage and emphasized doctor availability. Relatives and health personnel seldom recognized patients' ability to consent, and patients' preferences were not always recognized. CONCLUSION: Nursing home patients and their relatives wanted doctors more involved in end-of-life care. They expected doctors to acknowledge their preferences and provide guidance and symptom relief. PRACTICE IMPLICATIONS: High-quality end-of-life care in nursing homes relies on organization, funding and skilled staff, including available doctors who are able to recognize illness trajectories and perform individualized Advance Care Planning.

Hope in action-facing cardiac death: A qualitative study of patients with life-threatening disease.

Coping with existential challenges is important when struck by serious disease, but apart from cancer and palliative care little is known about how patients deal with such issues and maintain hope. To explore how patients with life-threatening heart disease experience hope when coping with mortality and other existential challenges, we conducted a qualitative study with semi-structured interviews. We made a purposive sample of 11 participants (26-88 years) who had experienced life-threatening disease: eight participants with serious heart disease, two with cancer, and one with severe chronic obstructive pulmonary disease. Analysis was by systematic text condensation. The findings showed that hope could enhance coping and diminish existential distress when patients were confronted with mortality and other existential challenges. Hope was observed as three types of dynamic work: to shift perception of mortality from overwhelming horror toward suppression or peaceful acceptance, to foster reconciliation instead of uncertainty when adapting to the new phase of life, and to establish go-ahead spirit instead of resignation as their identity. Meaning of life could, hence, be sustained in spite of serious threats to the persons' future, everyday life, and self-conception. The work of hoping could be supported or disturbed by relationships with family, friends, and health care professionals. Hope can be regarded as an active, dynamic state of existential coping among patients with life-threatening disease. Physicians may support this coping and thereby provide personal growth and alleviation of existential distress by skillfully identifying, acknowledging, and participating in the work of hoping performed by the patient.