RESUMO
OBJECTIVES: To explore and compare physicians' reported moral distress in 2004 and 2021 and identify factors that could be related to these responses. DESIGN: Longitudinal survey. SETTING: Data were gathered from the Norwegian Physician Panel Study, a representative sample of Norwegian physicians, conducted in 2004 and 2021. PARTICIPANTS: 1499 physicians in 2004 and 2316 physicians in 2021. MAIN OUTCOME MEASURES: The same survey instrument was used to measure change in moral distress from 2004 to 2021. Logistic regression analyses examined the role of gender, age and place of work. RESULTS: Response rates were 67% (1004/1499) in 2004 and 71% (1639/2316) in 2021. That patient care is deprived due to time constraints is the most severe dimension of moral distress among physicians, and it has increased as 68.3% reported this 'somewhat' or 'very morally distressing' in 2004 compared with 75.1% in 2021. Moral distress also increased concerning that patients who 'cry the loudest' get better and faster treatment than others. Moral distress was reduced on statements about long waiting times, treatment not provided due to economic limitations, deprioritisation of older patients and acting against one's conscience. Women reported higher moral distress than men at both time points, and there were significant gender differences for six statements in 2021 and one in 2004. Age and workplace influenced reported moral distress, though not consistently for all statements. CONCLUSION: In 2004 and 2021 physicians' moral distress related to scarcity of time or unfair distribution of resources was high. Moral distress associated with resource scarcity and acting against one's conscience decreased, which might indicate improvements in the healthcare system. On the other hand, it might suggest that physicians have reduced their ideals or expectations or are morally fatigued.
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Médicos , Humanos , Noruega , Masculino , Feminino , Estudos Longitudinais , Médicos/psicologia , Pessoa de Meia-Idade , Adulto , Inquéritos e Questionários , Princípios Morais , Atitude do Pessoal de Saúde , Angústia Psicológica , Estresse Psicológico , Idoso , Modelos Logísticos , Fatores SexuaisRESUMO
BACKGROUND: Acutely ill and frail older adults and their next of kin are often poorly involved in treatment and care decisions. This may lead to either over- or undertreatment and unnecessary burdens. The aim of this project is to improve user involvement and health services for frail older adults living at home, and their relatives, by implementing advance care planning (ACP) in selected hospital wards, and to evaluate the clinical and the implementation interventions. METHODS: This is a cluster randomized trial with 12 hospital units. The intervention arm receives implementation support for 18 months; control units receive the same support afterwards. The ACP intervention consists of 1. Clinical intervention: ACP; 2. Implementation interventions: Implementation team, ACP coordinator, network meetings, training and supervision for health care personnel, documentation tools and other resources, and fidelity measurements with tailored feedback; 3. Implementation strategies: leadership commitment, whole ward approach and responsive evaluation. Fidelity will be measured three times in the intervention arm and twice in the control arm. Here, the primary outcome is the difference in fidelity changes between the arms. We will also include 420 geriatric patients with one close relative and an attending clinician in a triadic sub-study. Here, the primary outcomes are quality of communication and decision-making when approaching the end of life as perceived by patients and next of kin, and congruence between the patient's preferences for information and involvement and the clinician's perceptions of the same. For patients we will also collect clinical data and health register data. Additionally, all clinical staff in both arms will be invited to answer a questionnaire before and during the implementation period. To explore barriers and facilitators and further explore the significance of ACP, qualitative interviews will be performed in the intervention units with patients, next of kin, health care personnel and implementation teams, and with other stakeholders up to national level. Lastly, we will evaluate resource utilization, costs and health outcomes in a cost-effectiveness analysis. DISCUSSION: The project may contribute to improved implementation of ACP as well as valuable knowledge and methodological developments in the scientific fields of ACP, health service research and implementation science. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT05681585. Registered 03.01.23.
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Planejamento Antecipado de Cuidados , Humanos , Idoso , Hospitalização , Hospitais , Pessoal de Saúde/educação , Pacientes , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
BACKGROUND: Research on the impact of ethics reflection groups (ERG) (also called moral case deliberations (MCD)) is complex and scarce. Within a larger study, two years of ERG sessions have been used as an intervention to stimulate ethical reflection about the use of coercive measures. We studied changes in: employees' attitudes regarding the use of coercion, team competence, user involvement, team cooperation and the handling of disagreement in teams. METHODS: We used panel data in a longitudinal design study to measure variation in survey scores from multidisciplinary employees from seven departments within three Norwegian mental health care institutions at three time points (T0-T1-T2). Mixed models were used to account for dependence of data in persons who participated more than once. RESULTS: In total, 1068 surveys (from 817 employees who did and did not participate in ERG) were included in the analyses. Of these, 7.6% (N = 62) responded at three points in time, 15.5% (N = 127) at two points, and 76.8% (N = 628) once. On average, over time, respondents who participated in ERG viewed coercion more strongly as offending (p < 0.05). Those who presented a case in the ERG sessions showed lower scores on User Involvement (p < 0.001), Team Cooperation (p < 0.01) and Constructive Disagreement (p < 0.01). We observed significant differences in outcomes between individuals from different departments, as well as between different professions. Initial significant changes due to frequency of participation in ERG and case presentation in ERG did not remain statistically significant after adjustment for Departments and Professions. Differences were generally small in absolute terms, possibly due to the low amount of longitudinal data. CONCLUSIONS: This study measured specific intervention-related outcome parameters for describing the impact of clinical ethics support (CES). Structural implementation of ERGs or MCDs seems to contribute to employees reporting a more critical attitude towards coercion. Ethics support is a complex intervention and studying changes over time is complex in itself. Several recommendations for strengthening the outcomes of future CES evaluation studies are discussed. CES evaluation studies are important, since-despite the intrinsic value of participating in ERG or MCD-CES inherently aims, and should aim, at improving clinical practices.
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Coerção , Psiquiatria , Humanos , Ética Clínica , Princípios Morais , Atitude do Pessoal de SaúdeRESUMO
OBJECTIVE: In a recent study, we explored what kind of existential concerns patients with advanced cancer disclose during a routine hospital consultation and how they communicate such concerns. The current study builds on these results, investigating how the physicians responded to those concerns. METHODS: We analyzed video-recorded hospital consultations involving adult patients with advanced cancer. The study has a qualitative and exploratory design, using procedures from microanalysis of face-to-face-dialogue. RESULTS: We identified 185 immediate physician-responses to the 127 patient existential utterances we had previously identified. The responses demonstrated three approaches: giving the patient control over the content, providing support, and taking control over the content. The latter was by far the most common, through which the physicians habitually kept the discussion around biomedical aspects and rarely pursued the patients' existential concerns. CONCLUSIONS: Although the physicians, to some extent, allowed the patients to talk freely about their concerns, they systematically failed to acknowledge and address the patients' existential concerns. PRACTICE IMPLICATIONS: Physicians should be attentive to their possible habit of steering the agenda towards biomedical topics, hence, avoiding patients' existential concerns. Initiatives cultivating behavior enhancing person-centered and existential communication should be implemented in clinical practice and medical training.
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Neoplasias , Médicos , Adulto , Comunicação , Existencialismo , Humanos , Neoplasias/terapia , Relações Médico-PacienteRESUMO
OBJECTIVE: Advanced cancer poses a threat to all aspects of being, potentially causing existential suffering. We explore what kind of existential concerns patients with advanced cancer disclose during a routine hospital consultation, and how they communicate such concerns. METHODS: We analyzed thirteen video-recorded hospital consultations involving adult patients with advanced cancer. The study has a qualitative and exploratory design, using procedures from microanalysis of face-to-face-dialogue. RESULTS: Nearly all patients disclosed how the illness experience included losses and threats of loss that are strongly associated with existential suffering, displaying uncertainty about future and insecurity about self and coping. Patients usually disclosed existential concerns uninvited, but they did so indirectly and subtly, typically hiding concerns in biomedical terms or conveying them with hesitation and very little emotion. CONCLUSIONS: Patients may have existential concerns they want to address, but they may be uncertain whether these are issues they can discuss with the physician. PRACTICE IMPLICATIONS: Health professionals should be attentive to underlying existential messages embedded in the patient's questions and concerns. Acknowledging these existential concerns provides an opportunity to briefly explore the patient's needs and may direct how the physician tailors information and support to promote coping, autonomy, and existential health.
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Revelação , Neoplasias , Adulto , Hospitais , Humanos , Fígado , Neoplasias/psicologia , Encaminhamento e ConsultaRESUMO
BACKGROUND: Nusinersen is one of an increasing number of new, expensive orphan drugs to receive authorization. These drugs strain public healthcare budgets and challenge principles for resource allocation. Nusinersen was introduced in the Norwegian public healthcare system in 2018. A national expert group consisting of physicians was formed to oversee the introduction and continuation of treatment in light of specific start and stop criteria. METHODS: We have studied experiences within the expert group with a special emphasis on their application of the start and stop criteria, rationing of treatment, and experienced moral dilemmas. A research interview with six members of the national expert group was performed, then analysed with manifest content analysis. The analysis was supplemented with publically available sources on priority setting and the process leading up to the introduction of nusinersen and the establishment of the expert group. RESULTS: Sixty-six patients have received treatment within the first 25 months since the national expert group's establishment. Treatment has not been discontinued for any patient. No patients under 18 years of age have been denied treatment, as those who were referred at this age were all deemed to fulfill the start criteria. The expert group has, however, increased geographical treatment equity and facilitated important cooperation at the national level. Furthermore, it has enhanced open and critical discussions of both medical issues and new ethical dilemmas. CONCLUSION: Although facilitating equal access to treatment for SMA patients, the national expert group has not discontinued treatment for any patient. It is suggested that in order for clinicians to be able to ration care for individual patients, they require both adequate support and sufficient formal authority. Start and stop criteria need to be re-evaluated as more knowledge and experience are gained regarding the treatment.
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Oligonucleotídeos , Médicos , Humanos , Noruega , Alocação de RecursosRESUMO
BACKGROUND: Prognostic uncertainty is a challenge for physicians in the neuro intensive care field. Questions about whether continued life-sustaining treatment is in a patient's best interests arise in different phases after a severe traumatic brain injury. In-depth information about how physicians deal with ethical issues in different contexts is lacking. The purpose of this study was to seek insight into clinicians' strategies concerning unresolved prognostic uncertainty and their ethical reasoning on the issue of limitation of life-sustaining treatment in patients with minimal or no signs of neurological improvement after severe traumatic brain injury in the later trauma hospital phase. METHODS: Interviews with 18 physicians working in a neurointensive care unit in a large Norwegian trauma hospital, followed by a qualitative thematic analysis focused on physicians' strategies related to treatment-limiting decision-making. RESULTS: A divide between proactive and wait-and-see strategies emerged. Notwithstanding the hospital's strong team culture, inter-physician variability with regard to ethical reasoning and preferred strategies was exposed. All the physicians emphasized the importance of team-family interactions. Nevertheless, their strategies differed: (1) The proactive physicians were open to consider limitations of life-sustaining treatment when the prognosis was grim. They initiated ethical discussions, took leadership in clarification and deliberation processes regarding goals and options, saw themselves as guides for the families and believed in the necessity to prepare families for both best-case and worst-case scenarios. (2) The "wait-and-see" physicians preferred open-ended treatment (no limitations). Neurologically injured patients need time to uncover their true recovery potential, they argued. They often avoided talking to the family about dying or other worst-case scenarios during this phase. CONCLUSIONS: Depending on the individual physician in charge, ethical issues may rest unresolved or not addressed in the later trauma hospital phase. Nevertheless, team collaboration serves to mitigate inter-physician variability. There are problems and pitfalls to be aware of related to both proactive and wait-and-see approaches. The timing of best-interest discussions and treatment-limiting decisions remain challenging after severe traumatic brain injury. Routines for timely and open discussions with families about the range of ethically reasonable options need to be strengthened.
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Lesões Encefálicas Traumáticas/terapia , Cuidados Críticos/ética , Tomada de Decisões , Futilidade Médica/ética , Médicos/psicologia , Humanos , Noruega , Pesquisa QualitativaAssuntos
Comitês de Ética Clínica/ética , Defesa do Paciente/ética , Participação do Paciente/estatística & dados numéricos , Adolescente , Criança , Morte , Comitês de Ética Clínica/organização & administração , Feminino , Humanos , Masculino , Noruega/epidemiologia , Pais/psicologia , Reino Unido/epidemiologiaRESUMO
BACKGROUND: School nurses have great responsibilities as the connecting link between school, children/adolescents, parents, and other healthcare services. Being in this middle position, and handling complex situations and problems related to children in school, may be demanding and also lead to ethical challenges. Clinical ethics support, such as ethics reflection groups, may be of help when dealing with ethical challenges. However, there is little research on experiences with ethics reflection groups among school nurses. AIM: The aim of this research was to explore how nurses in school healthcare experience their role, and how they experience participation in ethics reflection groups, using a model for systematic ethics reflection, the Centre for Medical Ethics model. RESEARCH DESIGN: The project had a qualitative design, using focus group interviews and thematic analysis. ETHICAL CONSIDERATIONS: The study was evaluated by the Data Protection Official at the Norwegian Centre for Research Data (project no. 57373). The participants were given oral and written information about the study and signed a written consent. PARTICIPANTS AND CONTEXT: Twelve participants from school healthcare were recruited to the interviews. FINDINGS: School nurses described their role as extremely challenging. How the school nurses experienced their role also influenced how they experienced participating in ethics reflection groups. The Centre for Medical Ethics model was experienced as both challenging and comprehensive. However, they also experienced that the model helped them to clarify their role and could also help them to find better solutions. CONCLUSION: The role as school nurse is complex and demanding, with several ethical challenges. Ethics reflection groups may be of great help when dealing with these challenges. However, it is of great importance that the methods used are adjusted to the professionals' needs and context.
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Ética em Enfermagem , Enfermeiras e Enfermeiros , Adolescente , Criança , Ética Médica , Grupos Focais , Humanos , Pesquisa Qualitativa , Instituições AcadêmicasRESUMO
BACKGROUND: Ritual circumcision of infant boys is controversial in Norway, as in many other countries. The procedure became a part of Norwegian public health services in 2015. A new law opened for conscientious objection to the procedure. We have studied physicians' refusals to perform ritual circumcision as an issue of professional ethics. METHOD: Qualitative interview study with 10 urologists who refused to perform ritual circumcision from six Norwegian public hospitals. Interviews were recorded and transcribed, then analysed with systematic text condensation, a qualitative analysis framework. RESULTS: The physicians are unanimous in grounding their opposition to the procedure in professional standards and norms, based on fundamental tenets of professional ethics. While there is homogeneity in the group when it comes to this reasoning, there are significant variations as to how deeply the matter touches the urologists on a personal level. About half of them connect their stance to their personal integrity, and state that performing the procedure would go against their conscience and lead to pangs of conscience. CONCLUSIONS: It is argued that professional moral norms sometimes might become more or less 'integrated' in the professional's core moral values and moral identity. If this is the case, then the distinction between conscience-based and professional refusals to certain healthcare services cannot be drawn as sharply as it has been.
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Comportamento Ritualístico , Circuncisão Masculina/ética , Médicos/ética , Padrões de Prática Médica/ética , Recusa em Tratar/ética , Ética Profissional , Hospitais Públicos , Humanos , Recém-Nascido , Masculino , Noruega , Pesquisa QualitativaRESUMO
BACKGROUND: Case consultation performed by clinical ethics committees (CECs) is a complex activity which should be evaluated. Several evaluation studies have reported stakeholder satisfaction in single institutions. The present study was conducted nationwide and compares clinicians' evaluations on a range of aspects with the CEC's own evaluation. METHODS: Prospective questionnaire study involving case consultations at 19 Norwegian CECs for 1 year, where consultations were evaluated by CECs and clinicians who had participated. RESULTS: Evaluations of 64 case consultations were received. Cases were complex with multiple ethical problems intertwined. Clinicians rated the average CEC consult highly, being both satisfied with the process and perceiving it to be useful across a number of aspects. CEC evaluations corresponded well with those of clinicians in a large majority of cases. Having next of kin/patients present was experienced as predominantly positive, though practised by only half of the CECs. The educational function of the consult was evaluated more positively when the CEC used a systematic deliberation method. CONCLUSIONS: CEC case consultation was found to be a useful service. The study is also a favourable evaluation of the Norwegian CEC system, implying that it is feasible to implement well-functioning CECs on a large scale. There are good reasons to involve the stakeholders in the consultations as a main rule.
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Atitude , Tomada de Decisões/ética , Comitês de Ética Clínica , Consultoria Ética , Ética Clínica , Participação dos Interessados , Atitude do Pessoal de Saúde , Análise Ética , Família , Humanos , Noruega , Médicos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: One of the core ethical principles in the Norwegian welfare state is the principle of justice; all citizens should have equal access to healthcare services, including nursing homes, independent of where they live, socioeconomic status or age. Patients who apply for a permanent place in a nursing home are among society's most vulnerable. Hence, it is of great importance that the process of nursing home placement is just. The purpose of this study was to explore which criteria and values allocation of nursing home placements are built on, and whether the process is just. METHODS: The study has a qualitative design. Data were collected through individual interviews and observation. Executive officers in different municipalities who have the formal responsibility for the placements, and GPs and nurses on short-term wards in nursing homes were interviewed. In addition, one of the researchers observed meetings where allocation of municipal healthcare services was discussed. RESULTS: Healthcare personnel in primary health care mainly agree on which criteria are the most important in order to safeguard the principle of justice. However, some unintended and less highlighted factors could jeopardise the ideal of fair and just allocation. Some of these were organizational variations, variations in the municipalities' economy, variations in individual judgments and resourceful and strong-willed relatives. CONCLUSIONS: Our study indicates that some of the weakest and most vulnerable patients in the Norwegian society are not treated equally. In order to safeguard the principle of justice, specific national criteria should be used in allocation of nursing home placements. However, national criteria are not enough. We suggest that in addition to guiding criteria, the unintended factors should be given more attention and focus on how to control them in a better way.
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Hospitais , Casas de Saúde , Recursos em Saúde , Humanos , NoruegaRESUMO
BACKGROUND: 52% of all deaths in Norway occur in nursing homes. Still advance care planning (ACP) is scarce and heterogeneous. To improve the implementation and practice of ACP in nursing homes, knowledge about health care professionals' views on ACP is vital. The objective of this study is to explore nurses and physicians' aims and experiences with carrying out ACP in nursing homes. METHODS: Semi-structured group interviews were conducted with 20 health care professionals, recruited from nursing homes where ACP was performed regularly. Qualitative content analysis was used to analyse the data. RESULTS: The primary aim of the nursing home professionals when doing ACP in nursing homes were to build alliances with next of kin to avoid misunderstandings and future conflicts. Two main experiences with ACP were described: i) due to the sensitivity of ACP issues, it was important to balance directness with being sensitive, and ii) when the physicians raised questions concerning future medical treatment, the answers from residents as well as next of kin were often hesitant and unclear. CONCLUSION: Our study add insights into how ACP is practiced in nursing homes and the professionals' agenda. A focus on medical issues and achieving consensus with next of kin may result in lack of involvement of the residents and limited awareness of the residents' needs. Interdisciplinary approaches, ACP-training and tailored guidelines may improve the implementation and practice of ACP.